A friend of mine shared this on Facebook. Since some of you don't "Facebook"---MOM---I feel pretty strongly about passinig it on so everyone reads it.
But when you give a banquet, invite the poor, the crippled, the lame, the blind, and you will be blessed. Although they cannot repay you, you will be repaid at the resurrection of the righteous.” — Luke 14:13-14
From what we read and what we know from the Bible, Jesus spent the majority of His ministry, caring for the sick, the hurt, the disabled. If we are to truly be like Him, if we are to truly be His hands and His feet, to put shoe leather on our faith, we need to follow that example. Sitting quietly in our comfortable pews is no longer an option. We must stop focusing on the disability a person has, stop thinking that it’s only that group over there, because we are all disabled in one way or another. We all have something about us that we know doesn’t “measure up”. Who among us would like that part of us to be highlighted, to be emphasized, to be the focus of who we are? Or do we want to be seen for the entirety of who God made us? We all have abilities that we bring to the throne of God, but we all also have brokenness that we bring to the cross. So, why are we only seeing potential in those whose brokenness we can’t see, when what we should be doing is looking at the possibilities every person has, through Jesus’ eyes? We now have a responsibility, to refocus on the part of the word disABILITY that really matters- Ability.
We are all in need of grace-not a single one of us can get there on our own. Some of us have hidden disabilities that we can more easily hide and pretend aren’t there, but they are. So, are we really that different from those of us with more outwardly apparent disabilities, just because we can see theirs, while we quietly hide our own? Do you remember that we are all part of one body-each with a purpose and each with equal meaning? The truth and beauty of God’s mercy, is that He doesn’t disqualify people from the gift of His sacrifice, based on IQ, how someone looks or how they perform in life or in society.
Why do we forget that He doesn’t call the equipped? He equips the called and we are ALL called to His service in one way or another. So, when there are families out there that want to go to church but can’t, because there is no place for them or their children, that is not ok with me. When the divorce rate for these families as hovering at 85%, that is not ok with me. When 1 in 91 children (which is the current statistic for an Autism diagnosis) are forced to watch others do, while they have to sit on the sidelines, that is not ok with me. It shouldn’t be ok with any of us. If we are going to talk about real people, real life…this is it! This is as real as it gets and we can no longer sit here and say that this part of our body is not needed. God makes that very clear….and so should we!
The eye cannot say to the hand, ‘I don’t need you!’ And the head cannot say to the feet, ‘I don’t need you!’ On the contrary, those parts of the body that seem to be weaker are indispensable, and the parts that we think are less honorable we treat with special honor….But God has combined the member of the body and has given greater honor to the parts that lacked it, so that there should be no division in the body, but that its parts should have equal concern for each other . 1 Cor. 12:21-23a, 24b-25
By Christi Armstrong
Wednesday, December 2, 2009
Friday, November 20, 2009
Thankful for Autism?? YOU BET!!
If you are a Facebook-er, you have probably seen the viral "what you are thankful for" posts. The jest of it is that everyday until Thanksgiving you post in your status update something for which you are thankful. Well, I thought it would be sort of fun, so I joined the bandwagon and started with the normal list; Jesus, husband, kids, parents, sisters, etc. Today, I am on #9 and my "thankful list" item for today is Autism. Yep, Autism, which may seem a little strange if you haven't been following my blog, but if you have you totally understand why it appears so high up on my list. This made me stop and think about why I am thankful for it and of course it turned into a big discussion with myself (don't worry, I wasn't actually talking to myself out loud, just in my head--admit it, you do it too!) I was having such a wonderful conversation with myself that I feel compelled to let the rest of you in on why I am so thankful for Autism.
At first the conversation was about me and how it has made me grow and become a better person, but it quickly turned into me reflecting on all the people that are a part of my life because of Autism. This is pretty amazing to me because most of them I would have probably never crossed paths with, and each one of them has had an impact on our journey and our lives. Thinking about them I had to put them in little groups that make sense of who they are and what they have done for us. Here are my little groups and a few people that I find to be unique and who have had a big impact on us:
People Who Autism was Thrust Upon
These are the parents and families of children with autism. These are people who imagined life a little different than it turned out for them. Many of them watched their perfectly normal child stop talking and start to withdraw from the world. One day a doctor came in and told them the "A" word, and from that moment on, things were different for them, they live lives very similar to mine, but also very different. You see the thing about Autism is it affects every child so differently. While Spencer is sweet, laid back and easy going, but can't talk and still poops his pants, there are kids who are brilliantly smart, but who scream in fits of anger for hours, bite, hit, and kick themselves and their parents. The amazing thing about this group is that we work together, we MUST. We have learned that you can't rely on one doctor to tell you what to do to fix it, you can't rely on one treatment to fix it, and when you think something is working, it stops working. We have to work together because if we didn't share our ideas and what works for each one of us, then we wouldn't know what to do or where to begin. We fight many of the same fights, insurance companies who don't want to pay, school districts who don't want to accommodate, doctors who don't understand and think we are crazy for not vaccinating our kids or that biomedical interventions are a worthless. I have met quiet a few "Warrior Moms", each with their own story and courage, many have given me strength in this journey, but there is one mom in particular that changed our life this past year, Stephanie Sanford. I crossed paths with Stephanie on the Katy Autism Support Yahoo Group, but had never met her face to face. Her son was only 3 at the time and what I found was a mom who had a relentless pursuit to heal her son. Following her story made me stop dead in my tracks and question if I was doing everything I could do to heal Spencer. We had been on the typical treatment path, which is do nothing, stick him in a special ed. class in the public school and hope for the best. But reading her story, I knew there was more, I knew there was hope, so earlier this year we changed directions and started our journey with Thoughtful House and Spectrum of Hope. (Yep, Steph I'm a stalker, but seriously your posts on KASG sparked that little flame that now burns like wild fire to heal my son). I'm so thankful for Stephanie and that I can call her my friend.
People who Know Autism Because they Know Us
I have found the most comfort with this group of people. They know "Mike and Tami" before Autism, they know us as individuals, not as the parents of a child with autism. They are our friends and family who have been on this journey with us every step of the way. In the early days, they "gently" let us know something wasn't right, they listened to us lament over Spencer when he didn't reach milestones, they are the people that completely understand the excitement you get when your 7 year old says "mommy" for the first time or that your 8 year old went an entire day without a pee accident. They find our stories funny and heartbreaking. They laugh with us when a Spencer "quirk" may seem weird and odd to and outsider, but we find totally hilarious!! They cry with us when it gets to be just too much to bear. They help me to feel normal when being a "Special Needs" parent feels so isolating. I could make a huge list of these people there are so many of them, but to name a few.....our Cinco neighbors (the Wosel's, the Barron's and the Matus'), my parents, my sisters, Honey and Pops, my friends at work, my BFF Susan. Every one of you is a part of this journey and we wouldn't be where we are today without you!!
People Who Chose Autism
These are the people that find passion in helping children with Autism and their families. Among them you will find many who wound up doing what they do, because they themselves were in group #1. Lucas at Thoughtful House has been a God send, you can go back and read the old posts about our experiences there, but to sum it up Spencer is getting better because of what they have taught us, shown us and encouraged us to do. They never stop; they have a drive and a passion to heal our children. When many people have said there is no "cure" they say maybe not, but there is hope and there is healing, these kids can live better lives. Another are the therapists and staff at Spectrum of Hope, some have children with Autism, some have relatives with Autism and some just have a passion to make life better for kids with Autism. What you find a Spectrum of Hope is a community of people who are bent to healing our kids. Like Thoughtful House, they know there is hope and healing. But by far one of the most incredible people I have ever met is Suzette Coates. This girl (and I say girl because she's probably only 25) has devoted 100% of her energy and efforts to our kids. She not only is a YCAP teacher in KISD during the school year, she spends her summer teaching ESY (summer school for special needs) and RUNNING a camp for children with disabilities!! She single handedly is able to wrangle up a whole bunch of young energetic teenagers to take a group of 12-15 children with disabilities all over Houston/Galveston for day trips in the summer. She also has the courage and energy to take the kids on OVERNIGHT camp outs during the summer--real campouts with tents, cooking over a fire and all!! She also, after spending all day with the kids in ESY, takes them to the pool swimming, she just doesn't stop!! To top it off, she has big dreams for the autism programs in Katy, I really pray that someday a sensible administrator will hear her ideas and impalement them. She dreams of a public school just for children with Autism (hmmm...much like Spectrum of Hope??). I would venture to say that it would be the best way to service and get our kids the help they need, and guess what....it would probably be a heck of a lot cheaper for the school district and save you and me loads in tax dollars!! I'm just sayin', someone needs to fix our education system!! Suzette, we can't wait to come back to Journey for a few weeks this summer! Girl, you are AMAZING!!
God's People
This final group I like to call God's people, these are the one's he put there. These are people that autism entered their life in a really unique way. It was not thrust upon them by having a child with Autism, they didn't come to know autism because they were friends of ours, and they didn't make a conscious choice to work with children/families of autism. They became a part of our family just by sheer coincidence and timing. I know these people were specifically chosen to be a part of this journey with us because they have all openly welcomed and loved Spencer despite his Autism. Gina Ravey-I met Gina when we were at our lowest point. We had just been handed the "A" diagnosis and within a few weeks Spencer was kicked out of preschool. (I could probably sue their tails off for it, they kicked him out when they found out he was dx with Autism....discrimination...YOU BET!! ) I was heartbroken and stressed. At the time I was traveling a lot for work and Mike was working long hours. We had nowhere to take our son. Our Occupational Therapist had been working with a child in an "at home" daycare and suggested I give her a call. At the time, I was pretty much against in home daycare; my view was only what I had seen on news, crazy people who abuse the kids in their care. But, God forever changed my view after meeting Gina. She is the most loving, giving, genuine, Christian woman I know. Through the time Spencer was with her we became good friends. I looked forward to every afternoon when I picked Spencer up because it meant a good conversation with a great friend. It wasn't always about Spencer and Autism either; we shared all that was going on in our lives (sick parents, dysfunctional families and little bit of gossip). She was special in that she took the time to understand Autism, to get to know how it affected Spencer, she had the courage to take on an Autistic child, but mostly, she loved Spencer just as much as we do, and still does. There was no better place for Spencer to be and I am so thankful to God for putting her in my life. Spencer stopped going to Gina's 3 years ago and she is still one of my good friends. I am so thankful Autism brought us together and that I can call her my friend!!
There are so many other people that come to mind that have helped and encouraged us along the way and each one of them is special to us. Madalyn Lee, Ms. Becky, Ms. Lakeisha and Ms. Dakeish at WCE YCAP--I miss you girls so much!! Audrey Bivens for being an administrator that puts the kids first and doesn't get jaded or swayed by the "process". Our friends at SBC OnDemand--for being great friends and wonderful examples of Christ. Ms. Brittney in Promise Land--she let's us have a few hours to worship God without the worry of Spencer. Dwayne and Cheryl Clark, Linda Thompson and all the Challenger Baseball folks and fellow Orioles--love you all for giving us a place where Spencer can be a normal kid for an hour!!
The KASG folks who I learn so much from every day! Camp Barnabas folks--what a wonderful place and nice few nights of respite for Mike and I. Our friend from Barnabas, Mike Skinner--an amazing guy with such a mature relationship with Christ. He has a genuine love for Spencer and our family.
Wow, I could go on forever!! This was by far one of the hardest posts ever! I sat down yesterday and thought I could just whip it out, but the more I typed the more my heart felt filled with love for so many people, but yet burdensome that I would leave someone out!!
I mean just as I typed that I thought of all our bus drivers, they were all so awesome, the ladies last year thought Mike and I were FBI agents!! How freakin funny is that, we for sure had many laughs last year with them (the jokes about us being special agents and undercover operatives were hilarious!!) Man and how could I forget our friends at Creech Elementary, Mrs. Iovine, Mrs. DeCaire and Mrs. Chaka our first special ed teachers and our Life Skills teacher Mrs. Clanton and Ms. Ruth!
And then there were all the therapists from the early years, when he was 2 and we really had no idea what was wrong with him. They were there to hold our hand and guide us through the difficult process at Texas Children's and the slew of specialists we saw there. Man that seems like ages ago and doesn't even feel like it was my life!!
Oh, and then there was Elwin Sims, our speech therapist, who pushed me (sometimes not so gently) to FIGHT for Spencer to get the diagnosis we needed to get him in the autism program in KISD!! Spencer had a formal autism diagnosis from Texas Children’s and KISD chose to ignore (um, the best specialists in the state??) and gave him a diagnosis of speech delay and mental retardation. That was a very difficult and LONG year, but Elwin was so helpful and full of information. He "chewed me out" a few times, telling me NOT to let them get away with that!! I miss Elwin!! :(
Seriously I could go on FOREVER, but I really need to wrap this up! If I didn't mention you, please know that EVERY person has at one time or another touched me in a way that has shaped me into the parent I am today, I love you all and am so THANKFUL for you! Have a very blessed Thanksgiving; I pray that you take the time to reflect on all the goodness that God has given you and me; and to thank Him for the ultimate sacrifice He gave us in His son, Jesus Christ!!
Until next time....grace, peace, hope, love and prayers!!
T
"Praise the LORD! Oh, give thanks to the LORD, for He is good! For His mercy endures forever. Who can utter the mighty acts of the LORD? Who can declare all His praise?" Psalm 106:1-2
At first the conversation was about me and how it has made me grow and become a better person, but it quickly turned into me reflecting on all the people that are a part of my life because of Autism. This is pretty amazing to me because most of them I would have probably never crossed paths with, and each one of them has had an impact on our journey and our lives. Thinking about them I had to put them in little groups that make sense of who they are and what they have done for us. Here are my little groups and a few people that I find to be unique and who have had a big impact on us:
People Who Autism was Thrust Upon
These are the parents and families of children with autism. These are people who imagined life a little different than it turned out for them. Many of them watched their perfectly normal child stop talking and start to withdraw from the world. One day a doctor came in and told them the "A" word, and from that moment on, things were different for them, they live lives very similar to mine, but also very different. You see the thing about Autism is it affects every child so differently. While Spencer is sweet, laid back and easy going, but can't talk and still poops his pants, there are kids who are brilliantly smart, but who scream in fits of anger for hours, bite, hit, and kick themselves and their parents. The amazing thing about this group is that we work together, we MUST. We have learned that you can't rely on one doctor to tell you what to do to fix it, you can't rely on one treatment to fix it, and when you think something is working, it stops working. We have to work together because if we didn't share our ideas and what works for each one of us, then we wouldn't know what to do or where to begin. We fight many of the same fights, insurance companies who don't want to pay, school districts who don't want to accommodate, doctors who don't understand and think we are crazy for not vaccinating our kids or that biomedical interventions are a worthless. I have met quiet a few "Warrior Moms", each with their own story and courage, many have given me strength in this journey, but there is one mom in particular that changed our life this past year, Stephanie Sanford. I crossed paths with Stephanie on the Katy Autism Support Yahoo Group, but had never met her face to face. Her son was only 3 at the time and what I found was a mom who had a relentless pursuit to heal her son. Following her story made me stop dead in my tracks and question if I was doing everything I could do to heal Spencer. We had been on the typical treatment path, which is do nothing, stick him in a special ed. class in the public school and hope for the best. But reading her story, I knew there was more, I knew there was hope, so earlier this year we changed directions and started our journey with Thoughtful House and Spectrum of Hope. (Yep, Steph I'm a stalker, but seriously your posts on KASG sparked that little flame that now burns like wild fire to heal my son). I'm so thankful for Stephanie and that I can call her my friend.
People who Know Autism Because they Know Us
I have found the most comfort with this group of people. They know "Mike and Tami" before Autism, they know us as individuals, not as the parents of a child with autism. They are our friends and family who have been on this journey with us every step of the way. In the early days, they "gently" let us know something wasn't right, they listened to us lament over Spencer when he didn't reach milestones, they are the people that completely understand the excitement you get when your 7 year old says "mommy" for the first time or that your 8 year old went an entire day without a pee accident. They find our stories funny and heartbreaking. They laugh with us when a Spencer "quirk" may seem weird and odd to and outsider, but we find totally hilarious!! They cry with us when it gets to be just too much to bear. They help me to feel normal when being a "Special Needs" parent feels so isolating. I could make a huge list of these people there are so many of them, but to name a few.....our Cinco neighbors (the Wosel's, the Barron's and the Matus'), my parents, my sisters, Honey and Pops, my friends at work, my BFF Susan. Every one of you is a part of this journey and we wouldn't be where we are today without you!!
People Who Chose Autism
These are the people that find passion in helping children with Autism and their families. Among them you will find many who wound up doing what they do, because they themselves were in group #1. Lucas at Thoughtful House has been a God send, you can go back and read the old posts about our experiences there, but to sum it up Spencer is getting better because of what they have taught us, shown us and encouraged us to do. They never stop; they have a drive and a passion to heal our children. When many people have said there is no "cure" they say maybe not, but there is hope and there is healing, these kids can live better lives. Another are the therapists and staff at Spectrum of Hope, some have children with Autism, some have relatives with Autism and some just have a passion to make life better for kids with Autism. What you find a Spectrum of Hope is a community of people who are bent to healing our kids. Like Thoughtful House, they know there is hope and healing. But by far one of the most incredible people I have ever met is Suzette Coates. This girl (and I say girl because she's probably only 25) has devoted 100% of her energy and efforts to our kids. She not only is a YCAP teacher in KISD during the school year, she spends her summer teaching ESY (summer school for special needs) and RUNNING a camp for children with disabilities!! She single handedly is able to wrangle up a whole bunch of young energetic teenagers to take a group of 12-15 children with disabilities all over Houston/Galveston for day trips in the summer. She also has the courage and energy to take the kids on OVERNIGHT camp outs during the summer--real campouts with tents, cooking over a fire and all!! She also, after spending all day with the kids in ESY, takes them to the pool swimming, she just doesn't stop!! To top it off, she has big dreams for the autism programs in Katy, I really pray that someday a sensible administrator will hear her ideas and impalement them. She dreams of a public school just for children with Autism (hmmm...much like Spectrum of Hope??). I would venture to say that it would be the best way to service and get our kids the help they need, and guess what....it would probably be a heck of a lot cheaper for the school district and save you and me loads in tax dollars!! I'm just sayin', someone needs to fix our education system!! Suzette, we can't wait to come back to Journey for a few weeks this summer! Girl, you are AMAZING!!
God's People
This final group I like to call God's people, these are the one's he put there. These are people that autism entered their life in a really unique way. It was not thrust upon them by having a child with Autism, they didn't come to know autism because they were friends of ours, and they didn't make a conscious choice to work with children/families of autism. They became a part of our family just by sheer coincidence and timing. I know these people were specifically chosen to be a part of this journey with us because they have all openly welcomed and loved Spencer despite his Autism. Gina Ravey-I met Gina when we were at our lowest point. We had just been handed the "A" diagnosis and within a few weeks Spencer was kicked out of preschool. (I could probably sue their tails off for it, they kicked him out when they found out he was dx with Autism....discrimination...YOU BET!! ) I was heartbroken and stressed. At the time I was traveling a lot for work and Mike was working long hours. We had nowhere to take our son. Our Occupational Therapist had been working with a child in an "at home" daycare and suggested I give her a call. At the time, I was pretty much against in home daycare; my view was only what I had seen on news, crazy people who abuse the kids in their care. But, God forever changed my view after meeting Gina. She is the most loving, giving, genuine, Christian woman I know. Through the time Spencer was with her we became good friends. I looked forward to every afternoon when I picked Spencer up because it meant a good conversation with a great friend. It wasn't always about Spencer and Autism either; we shared all that was going on in our lives (sick parents, dysfunctional families and little bit of gossip). She was special in that she took the time to understand Autism, to get to know how it affected Spencer, she had the courage to take on an Autistic child, but mostly, she loved Spencer just as much as we do, and still does. There was no better place for Spencer to be and I am so thankful to God for putting her in my life. Spencer stopped going to Gina's 3 years ago and she is still one of my good friends. I am so thankful Autism brought us together and that I can call her my friend!!
There are so many other people that come to mind that have helped and encouraged us along the way and each one of them is special to us. Madalyn Lee, Ms. Becky, Ms. Lakeisha and Ms. Dakeish at WCE YCAP--I miss you girls so much!! Audrey Bivens for being an administrator that puts the kids first and doesn't get jaded or swayed by the "process". Our friends at SBC OnDemand--for being great friends and wonderful examples of Christ. Ms. Brittney in Promise Land--she let's us have a few hours to worship God without the worry of Spencer. Dwayne and Cheryl Clark, Linda Thompson and all the Challenger Baseball folks and fellow Orioles--love you all for giving us a place where Spencer can be a normal kid for an hour!!
The KASG folks who I learn so much from every day! Camp Barnabas folks--what a wonderful place and nice few nights of respite for Mike and I. Our friend from Barnabas, Mike Skinner--an amazing guy with such a mature relationship with Christ. He has a genuine love for Spencer and our family.
Wow, I could go on forever!! This was by far one of the hardest posts ever! I sat down yesterday and thought I could just whip it out, but the more I typed the more my heart felt filled with love for so many people, but yet burdensome that I would leave someone out!!
I mean just as I typed that I thought of all our bus drivers, they were all so awesome, the ladies last year thought Mike and I were FBI agents!! How freakin funny is that, we for sure had many laughs last year with them (the jokes about us being special agents and undercover operatives were hilarious!!) Man and how could I forget our friends at Creech Elementary, Mrs. Iovine, Mrs. DeCaire and Mrs. Chaka our first special ed teachers and our Life Skills teacher Mrs. Clanton and Ms. Ruth!
And then there were all the therapists from the early years, when he was 2 and we really had no idea what was wrong with him. They were there to hold our hand and guide us through the difficult process at Texas Children's and the slew of specialists we saw there. Man that seems like ages ago and doesn't even feel like it was my life!!
Oh, and then there was Elwin Sims, our speech therapist, who pushed me (sometimes not so gently) to FIGHT for Spencer to get the diagnosis we needed to get him in the autism program in KISD!! Spencer had a formal autism diagnosis from Texas Children’s and KISD chose to ignore (um, the best specialists in the state??) and gave him a diagnosis of speech delay and mental retardation. That was a very difficult and LONG year, but Elwin was so helpful and full of information. He "chewed me out" a few times, telling me NOT to let them get away with that!! I miss Elwin!! :(
Seriously I could go on FOREVER, but I really need to wrap this up! If I didn't mention you, please know that EVERY person has at one time or another touched me in a way that has shaped me into the parent I am today, I love you all and am so THANKFUL for you! Have a very blessed Thanksgiving; I pray that you take the time to reflect on all the goodness that God has given you and me; and to thank Him for the ultimate sacrifice He gave us in His son, Jesus Christ!!
Until next time....grace, peace, hope, love and prayers!!
T
"Praise the LORD! Oh, give thanks to the LORD, for He is good! For His mercy endures forever. Who can utter the mighty acts of the LORD? Who can declare all His praise?" Psalm 106:1-2
Friday, November 13, 2009
You only think you need what you need
A friend of mine posted a link to an article on Facebook about Families of Chidren with Special Needs, here it is....
A Different Beat
Written By Cammie McGovern
No one thinks they'd be good at raising a child with special needs. Until a child becomes your child.
A dear friend, in her first trimester of pregnancy, called in a panic when some early screening tests came back with questionable results. "I know I'd be a terrible special needs mother," she wailed. Strange that she was having this particular panic attack with me, when my oldest son Ethan is an 11-year-old with autism, and her worst-case scenario is basically the story of my life.
I tried to bring the voice of reason: Those tests are always dicey, this baby will probably be fine. I also told her something my prescient mother said when I was having a similar flight of fear during my first pregnancy. "If your baby has problems, you'll deal with it. You'll do what you have to."
What I wanted to tell her is that no one believes they'd be good with a child who has special needs. Presumably one decides to have a baby to put a certain limit on the navel-gazing and solipsism of life before children, but for most people there's a ceiling to their desire for martyrdom. "I'm too selfish," my friend wailed, exactly the sort of thing I once said myself. If I remember correctly, I think I even added, as a stab at sounding open-minded: "I guess I could deal with anything except cognitive issues."
Now that I have a child with special needs — with cognitive issues and more — I've learned that it means years of walking through a world filled with doctors and therapists and what feels for a long time like many closed doors. Everything that other mothers and babies were doing seemed like a trial: Mommy and Me groups, toddler swim lessons, baby gym classes were all an exercise in watching my son withdraw and retreat. It was a long, slow realization that brought with it a surprising measure of relief: He'll never look fine, so why bother trying. With that understanding I began to see what it took me far too long to grasp: This wasn't about what other people thought, or how we looked, or how well he managed to blend into a group of other children his age. This was about him, enriching his world, widening it as far as possible for him.
In the weeks after Ethan was diagnosed, just after his third birthday, I felt as if I'd walked through the only door that felt open at the time — into the world of other parents with special needs kids. And there I found, to my surprise, a group of parents who dwelled not on their misfortune but on the details of their children, a thousand specifics that, once you looked at them, were oddly fascinating. "My son loves drumming," one mother told me. I didn't know her son well; I only knew that he was 18 years old with "multiple issues." He was blind, deaf, and used a wheelchair, certainly a worst-case scenario for many people, but there was also this: With a drum in his lap, he could keep a steady beat, feel music through his feet, and play along accurately. Imagine the feeling his mother had discovering this. For everything he couldn't do, look at what he could.
As it turns out, music is a godsend for many of these kids, an avenue into an otherwise tangled brain. A while back, my own son, who struggles mightily with writing, was trying to spell the word face and did it first by singing, in perfect pitch, the piano notes F-A-C-E. How inefficient, of course. How convoluted. But it also has to be said: How interesting. Since then, he has discovered his own love of drumming and has joined his public elementary school's beginner band, forging a path not only to learning, but, at last, to other kids.
When I made the passing remark years ago suggesting that I could deal with anything but cognitive impairment, I suppose I thought having a child who saw the world in simple terms would quickly grow old. The reality has been the exact opposite: A child with special needs is endlessly interesting. No matter what a doctor tells you to expect, these children follow no prescribed pattern of development, making them in many ways less predictable and more compelling than their typically developing peers. If I'd had a glimpse when I was pregnant of what Ethan's life would be like — how hard it would be sometimes to be his mom, how lonely and frightening — I know I would have wept and said I could never do it, not in a million years. But then the actual child comes, with big green eyes and doughy cheeks and, even as a 3-month-old, a sensitivity to music that makes him stop wailing instantly if he hears a thread of opera. You watch his little face furrow to the music, taking it in like an adult, and you think: This child seems so different, in ways that are both hard and good. And then the face and the particulars simply take over. You couldn't do it in general, but for this child, this one, you can. And you do.
About the Author: Cammie McGovern is the mother of three sons and the author of Eye Contact, a mystery about an autistic boy who witnesses a murder. Ethan, a Bruce Springsteen fan, is planning to invite The Boss to his next birthday.
I agree with the author of this article on so many levels. From feeling like an outsider at typical mommy and me classes or birthday parties, meeting remarkable parents, dwelling on the details of my child, but what hit me the most was the admission that at one time we have all openly admitted that there is NO WAY we could be a good parent to a child with special needs. Well, I will confess I was that person. But MAN has this journey changed me!! I sit here today and can say that I NEED Spencer, so much more than he needs me. I need him to show me the joy in life, to teach me to be strong, to fight for what I believe in, to work hard, take in the "details" of every part of creation, to listen through music not just to music, to show/teach me grace and mercy. This journey has brought me to my knees weeping and asking why me, why Spencer, I can't do this any more! But more often than that, it has brought me to the highest mountain, feeling full of life and close to Christ!
Sometimes there are things we need and we just don't know we need them. I have learned to value and seek out those little things in life that have been put there (because we need them) to show us who our creator really is and that HE is in control.
Have there been or are there things that you have experienced in your life that weren't a lot of fun (or maybe just plain dreadful), but you realized in the end it was something you needed?
Update on Spencer's Treatment
Spoke to Lucas at Thoughtful House last week about our Challenge Test results. I was correct the DMSA didn't do squat. He told us there are a few reasons it didn't pull any metals....1.) he doesn't have any metals to pull, 2.) the DMSA med doesn't work for him, 3.) his body didn't absorb the DMSA suppository correctly.
We can't go with reason #1 because what if it were #2 wrong med or #3 poor absorbtion of suppository. So, we really have 2 options if we want to keep trying Chelation.
Option 1:
We can tray another medication that is also a suppository, which would take care of ruling out the possiblity that (#2) it was the wrong med. However, if we still don't pull metals then we still question whether #1 does he have metals to pull or (#3) is he just not absorbing a suppository.
Option 2:
We can do an IV challenge test using a different med, EDTA. This requires a trip to Austin and is considerably more expensive and invasive for Spencer. But, this is a good option, because we change the medication (#2) and the vehicle in which it is adminstered (#3). Also, If we go this route and there still aren't any metals pulled then we know for sure that there aren't any metals to pull (#1) and chelation isn't a good treatment for Spencer.
Option 1 is a lot easier and cheaper, but I feel like it could be a total waste of money, because if it doesn't work then we go to Option 2 anyway. So, we are going to skip that test and move right to Option 2. We should be making the trip soon. I'm waiting on the appointment and test kits to come and I'm anticipating it will be sometime after Thanksgiving. One of our friends a Spectrum of Hope started IV chelation at Thoughtful House a month ago. They also live in Katy and we have been talking about coordinating our appointments so we can travel together. Should make the trip easier and more enjoyable.
Spencer has been showing signs of yeast again, so we are going to do another round of Diflucan. I'm just praying we don't have the troubling behaviors we had last time. I take peace in knowing they are temporary and that he will feel better when we are all done.
Have to share this....
As you recall from the last entry, Spencer loves to play the drums. His new "thing" is he puts Animusic on the DVD player and gets out his drum and "plays along" with the movie. HILARIOUS!!
Until next time, grace, peace, hope, love and prayers...
T
The King will reply, "I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me."
Matthew 25:40
A Different Beat
Written By Cammie McGovern
No one thinks they'd be good at raising a child with special needs. Until a child becomes your child.
A dear friend, in her first trimester of pregnancy, called in a panic when some early screening tests came back with questionable results. "I know I'd be a terrible special needs mother," she wailed. Strange that she was having this particular panic attack with me, when my oldest son Ethan is an 11-year-old with autism, and her worst-case scenario is basically the story of my life.
I tried to bring the voice of reason: Those tests are always dicey, this baby will probably be fine. I also told her something my prescient mother said when I was having a similar flight of fear during my first pregnancy. "If your baby has problems, you'll deal with it. You'll do what you have to."
What I wanted to tell her is that no one believes they'd be good with a child who has special needs. Presumably one decides to have a baby to put a certain limit on the navel-gazing and solipsism of life before children, but for most people there's a ceiling to their desire for martyrdom. "I'm too selfish," my friend wailed, exactly the sort of thing I once said myself. If I remember correctly, I think I even added, as a stab at sounding open-minded: "I guess I could deal with anything except cognitive issues."
Now that I have a child with special needs — with cognitive issues and more — I've learned that it means years of walking through a world filled with doctors and therapists and what feels for a long time like many closed doors. Everything that other mothers and babies were doing seemed like a trial: Mommy and Me groups, toddler swim lessons, baby gym classes were all an exercise in watching my son withdraw and retreat. It was a long, slow realization that brought with it a surprising measure of relief: He'll never look fine, so why bother trying. With that understanding I began to see what it took me far too long to grasp: This wasn't about what other people thought, or how we looked, or how well he managed to blend into a group of other children his age. This was about him, enriching his world, widening it as far as possible for him.
In the weeks after Ethan was diagnosed, just after his third birthday, I felt as if I'd walked through the only door that felt open at the time — into the world of other parents with special needs kids. And there I found, to my surprise, a group of parents who dwelled not on their misfortune but on the details of their children, a thousand specifics that, once you looked at them, were oddly fascinating. "My son loves drumming," one mother told me. I didn't know her son well; I only knew that he was 18 years old with "multiple issues." He was blind, deaf, and used a wheelchair, certainly a worst-case scenario for many people, but there was also this: With a drum in his lap, he could keep a steady beat, feel music through his feet, and play along accurately. Imagine the feeling his mother had discovering this. For everything he couldn't do, look at what he could.
As it turns out, music is a godsend for many of these kids, an avenue into an otherwise tangled brain. A while back, my own son, who struggles mightily with writing, was trying to spell the word face and did it first by singing, in perfect pitch, the piano notes F-A-C-E. How inefficient, of course. How convoluted. But it also has to be said: How interesting. Since then, he has discovered his own love of drumming and has joined his public elementary school's beginner band, forging a path not only to learning, but, at last, to other kids.
When I made the passing remark years ago suggesting that I could deal with anything but cognitive impairment, I suppose I thought having a child who saw the world in simple terms would quickly grow old. The reality has been the exact opposite: A child with special needs is endlessly interesting. No matter what a doctor tells you to expect, these children follow no prescribed pattern of development, making them in many ways less predictable and more compelling than their typically developing peers. If I'd had a glimpse when I was pregnant of what Ethan's life would be like — how hard it would be sometimes to be his mom, how lonely and frightening — I know I would have wept and said I could never do it, not in a million years. But then the actual child comes, with big green eyes and doughy cheeks and, even as a 3-month-old, a sensitivity to music that makes him stop wailing instantly if he hears a thread of opera. You watch his little face furrow to the music, taking it in like an adult, and you think: This child seems so different, in ways that are both hard and good. And then the face and the particulars simply take over. You couldn't do it in general, but for this child, this one, you can. And you do.
About the Author: Cammie McGovern is the mother of three sons and the author of Eye Contact, a mystery about an autistic boy who witnesses a murder. Ethan, a Bruce Springsteen fan, is planning to invite The Boss to his next birthday.
I agree with the author of this article on so many levels. From feeling like an outsider at typical mommy and me classes or birthday parties, meeting remarkable parents, dwelling on the details of my child, but what hit me the most was the admission that at one time we have all openly admitted that there is NO WAY we could be a good parent to a child with special needs. Well, I will confess I was that person. But MAN has this journey changed me!! I sit here today and can say that I NEED Spencer, so much more than he needs me. I need him to show me the joy in life, to teach me to be strong, to fight for what I believe in, to work hard, take in the "details" of every part of creation, to listen through music not just to music, to show/teach me grace and mercy. This journey has brought me to my knees weeping and asking why me, why Spencer, I can't do this any more! But more often than that, it has brought me to the highest mountain, feeling full of life and close to Christ!
Sometimes there are things we need and we just don't know we need them. I have learned to value and seek out those little things in life that have been put there (because we need them) to show us who our creator really is and that HE is in control.
Have there been or are there things that you have experienced in your life that weren't a lot of fun (or maybe just plain dreadful), but you realized in the end it was something you needed?
Update on Spencer's Treatment
Spoke to Lucas at Thoughtful House last week about our Challenge Test results. I was correct the DMSA didn't do squat. He told us there are a few reasons it didn't pull any metals....1.) he doesn't have any metals to pull, 2.) the DMSA med doesn't work for him, 3.) his body didn't absorb the DMSA suppository correctly.
We can't go with reason #1 because what if it were #2 wrong med or #3 poor absorbtion of suppository. So, we really have 2 options if we want to keep trying Chelation.
Option 1:
We can tray another medication that is also a suppository, which would take care of ruling out the possiblity that (#2) it was the wrong med. However, if we still don't pull metals then we still question whether #1 does he have metals to pull or (#3) is he just not absorbing a suppository.
Option 2:
We can do an IV challenge test using a different med, EDTA. This requires a trip to Austin and is considerably more expensive and invasive for Spencer. But, this is a good option, because we change the medication (#2) and the vehicle in which it is adminstered (#3). Also, If we go this route and there still aren't any metals pulled then we know for sure that there aren't any metals to pull (#1) and chelation isn't a good treatment for Spencer.
Option 1 is a lot easier and cheaper, but I feel like it could be a total waste of money, because if it doesn't work then we go to Option 2 anyway. So, we are going to skip that test and move right to Option 2. We should be making the trip soon. I'm waiting on the appointment and test kits to come and I'm anticipating it will be sometime after Thanksgiving. One of our friends a Spectrum of Hope started IV chelation at Thoughtful House a month ago. They also live in Katy and we have been talking about coordinating our appointments so we can travel together. Should make the trip easier and more enjoyable.
Spencer has been showing signs of yeast again, so we are going to do another round of Diflucan. I'm just praying we don't have the troubling behaviors we had last time. I take peace in knowing they are temporary and that he will feel better when we are all done.
Have to share this....
As you recall from the last entry, Spencer loves to play the drums. His new "thing" is he puts Animusic on the DVD player and gets out his drum and "plays along" with the movie. HILARIOUS!!
Until next time, grace, peace, hope, love and prayers...
T
The King will reply, "I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me."
Matthew 25:40
Sunday, October 25, 2009
The Spartan and The Drummer
WOW am I a total slacker or what?? I just noticed my last entry was Sept 4, and here it is Oct 25! Yipes!! So, you might conclude that we have had A LOT going on and you would be correct!! I will try to be brief and give a little update....
Parker
I can't believe I have a 5th grader...how did this happen??? As you know Parker is playing football this year and finally made the weight limit to be able to handle the ball. This is super cool for him and for us. The Spartans had a really rough start to the season, losing the first two games. But WOW have they kicked it up a notch!! Game 3 & 4 were both wins and both against fairly decent teams. Game 5 was yesterday against a tough opponent and Parker was sick!! He was so bummed about missing the game, as soon as it was over, he pestered me about emailing his coach to get the results. If you know Jeff, if they boys had lost he would NOT want to hear from one of his best players who was out sick wanting to know the score. I played it cool and posted a status comment on Facebook asking the score. Instant reply....they won!! On the second play of the game, the Spartans scored a TD and went on to hold the score 6-0!! Just a few more games and we head into the playoffs!! Some season highlights for #18....Game 2 Parker had a fumble recovery, which he was very excited about...see below holding up the prized ball....
Game 4....Parker scored his first "points", not a touchdown but a two point conversion. Here's a picture of the catch...
But this has got to be my all time favorite football picture of Parker. Didn't quiet catch it, but a cool picture....
Other than football, he's really just got a lot of school commitments....he is in 5th grade choir, which is fun. He will have a concert during the holidays and then another in the spring as the kids travel to Sea World in San Antonio. In addition to choir, he was elected for Student Council, Safety Patrol and RISE. RISE is a really cool science program where the kids create a "base" to be used on another planet and then will have an overnight stay at school in their "base" on a pretend planet. Pretty fun right??? It did sound really cool until we went to the parent meeting and were informed WE would have to volunteer to help overnight....drats, I thought it was going to be a kid free night?? It should be fun anyway! :)
Had our first teacher conference and he is doing so great, I'm pretty sure you would all suspect!! He is a talker in class (shocking), but his teacher told us that any kid that she has had in her 32 years of teaching that was a straight A student who was a talker, went on to be really successful! Well, of course!! She also said he is by far the leader of the class and all the other kids really follow what he does. We are trying to instill in him that being the leader requires a great amount of responsibility and self discipline to lead others to do the right thing. But by far the best thing to hear out of the conference was his teacher tell about how he talks about his little brother in class and to his peers. This isn't something that we see, because when we are all together Spencer is usually just irritating Parker. It makes me so proud to hear how well he is accepting of having a brother with special needs. (Althought never let him fool you, he doesn't want for anything!!)
Spencer
Last post talked about the Challenge Tests and Chelation. We did it a few weeks ago and the test results came in, we are now just waiting on feedback from Lucas on what they mean. I am no expert in reading tests, but based on what I can tell, the Chelation didn't do squat!! So, I'm suspecting we will be making another trip to Austin to try the IV chelation which is stronger and will hopefully pull more metals.
We started two new supplements, so we are on a grand total of 14!! The hardest part about being on so many is not running out!! I am having to order something every week. Somehow we manage to run out of a supplement and then he goes without for a few days. This alwasy jacks his system up a little bit....so very frustrating. I sent another order to Thoughtful House last week and ordered probably 4 bottles of all of them!! Hopefully that will tide us over for a month...my goal is to only order once a month....do I need to create some sort of spreadsheet? It would be so much easier if they were all packaged the same...some have 30 pills, some have 90, some even crazier have a random odd number like 43. Come on, can't they all just have 30??
The 2 new suppplements have done a lot of good....they are GABA and Glyconic DMG. Both of which are supposed to increase cellular activity (hoping for more energy and more brain activity). Lucas told us to watch out for decreased sleep and increased stimming. Stimming, hmm....I don't think I have talked about this before....here's a little lesson.....
Stimming is an easy way to say stimulatory behavior, things he does repetively that "feel good"...his stims come and go, and sometimes reappear. He has a few physical stims, like hand flapping, jumping and squeeling, folding his ears, and one of my favorites, "crazy eyes". He also has some that aren't physical, things like closing doors, flushing toilets, playing with light switches. If you stop and think about it, we all have "stims". Some of mine are chewing ice, picking my nails, messin with my hair, bouncing my legs. Think about it....what are yours? Stims are only bad when they are socially unaccpetable or get in the way of him learning. Well that and of course the ones that really irritate me! The toilet and light switch thing drive me crazy!! We work really hard to try and eliminate most of them, we have some success, but they often come back if we don't stay focused on them.
Okay, where were we...oh yeah, the new sups could cause a lack of sleep and increased stimming. The dosing is 4 pills of each twice a day. We have worked up to 2 pills of each twice a day, and he started sleeping less and seemed to move a little faster. Moving faster..GOOD, sleeping less....not good!! These are both great signs that they are working!! BUT, I'm a little concerned if we move up dosing too fast, we will end up with a crazy kid who doesn't sleep! I'm thinking......we are just going to keep it as is, until he regulates.
Second cool thing....he got his communication device (ACD) and it is SOO COOL!! You may have seen them before, they are generally used for parapalegics or anyone who can't speak. They are working with him at Spectrum on how to use it and have even added his programming to it. He seems to be doing pretty good learning how to use it at school. At home is another story, he tends to just "play" with it rather than actually use it to communicate. Maybe the problem is me....yep, that's usually the case!! :)
He's doing great at Spectrum!! Of course, everyone loves him to pieces! To me, the best part about being in private school, you get to actually celebrate HOLIDAYS!!! YAY, we had a Halloween party on Friday...lots of fun...he was a rocker...or better yet, a Drummer!! Some say he's going to be a famous drummer some day....maybe so, but he needs a drum set, and that just isn't going to happen in this house!! That is unless we convert the garage or put some soundproofing up. He did look totally cool....
This was a super busy day for us, we went straight from the party home to get ready for the Third Day concert. Parker was sick so he didn't get to go, so it was just me and little man. He was already dressed for the occasion, so he just kept sporting the hawk and wearing his black t-shirt and skinny jeans!! He LOVED LOVED LOVED the concert!! He was in awe of all the lights, sounds and of course the rockin' out! He played air guitar and air drums all night long. Very cute!! This was his first concert other than rodeo concerts, which don't really count because that little rotating stage in the center just doesn't qualify as concert-worthy! It was a good night, I love spending time with little dude!
A really cool thing happened at church today, a friend of mine who helps in Promise Land (that's his Sunday school class for special needs kids) said to me...."Wow, I can really see a change in Spencer, what have you been doing with him? He was giving great eye contact and was really engaged in class today." I just love hearing people spontaneously say they have noticed a difference, we easily get into the rut of taking all his progress for granted and start thinking that it's not working, too difficult and start getting lazy. But when you hear that....WHAM, it's like "ahh yeah, it's working!!"
Okay, I'm beat, I'm not even going to proof or spell check....so, sorry if there are mistakes. There are so many more great stories from the past 6 weeks, but I have got to wrap this thing up....another crazy week awaits!!
Until next time....grace, peace, hope, love and prayers!
T
Yet, I am always with you; you hold me by my right hand.
You guide me with your counsel, and afterward you will take me into glory.
Whom have I in heaven but you? And earth has nothing I desire besides you.
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Those who are far from you will perish; you destroy all who are unfaithful to you.
But as for me, it is good to be near God. I have made the Sovereign Lord my refuge; I will tell of all your deeds.
Psalms 73:23-28
Parker
I can't believe I have a 5th grader...how did this happen??? As you know Parker is playing football this year and finally made the weight limit to be able to handle the ball. This is super cool for him and for us. The Spartans had a really rough start to the season, losing the first two games. But WOW have they kicked it up a notch!! Game 3 & 4 were both wins and both against fairly decent teams. Game 5 was yesterday against a tough opponent and Parker was sick!! He was so bummed about missing the game, as soon as it was over, he pestered me about emailing his coach to get the results. If you know Jeff, if they boys had lost he would NOT want to hear from one of his best players who was out sick wanting to know the score. I played it cool and posted a status comment on Facebook asking the score. Instant reply....they won!! On the second play of the game, the Spartans scored a TD and went on to hold the score 6-0!! Just a few more games and we head into the playoffs!! Some season highlights for #18....Game 2 Parker had a fumble recovery, which he was very excited about...see below holding up the prized ball....
But this has got to be my all time favorite football picture of Parker. Didn't quiet catch it, but a cool picture....
Had our first teacher conference and he is doing so great, I'm pretty sure you would all suspect!! He is a talker in class (shocking), but his teacher told us that any kid that she has had in her 32 years of teaching that was a straight A student who was a talker, went on to be really successful! Well, of course!! She also said he is by far the leader of the class and all the other kids really follow what he does. We are trying to instill in him that being the leader requires a great amount of responsibility and self discipline to lead others to do the right thing. But by far the best thing to hear out of the conference was his teacher tell about how he talks about his little brother in class and to his peers. This isn't something that we see, because when we are all together Spencer is usually just irritating Parker. It makes me so proud to hear how well he is accepting of having a brother with special needs. (Althought never let him fool you, he doesn't want for anything!!)
Spencer
Last post talked about the Challenge Tests and Chelation. We did it a few weeks ago and the test results came in, we are now just waiting on feedback from Lucas on what they mean. I am no expert in reading tests, but based on what I can tell, the Chelation didn't do squat!! So, I'm suspecting we will be making another trip to Austin to try the IV chelation which is stronger and will hopefully pull more metals.
We started two new supplements, so we are on a grand total of 14!! The hardest part about being on so many is not running out!! I am having to order something every week. Somehow we manage to run out of a supplement and then he goes without for a few days. This alwasy jacks his system up a little bit....so very frustrating. I sent another order to Thoughtful House last week and ordered probably 4 bottles of all of them!! Hopefully that will tide us over for a month...my goal is to only order once a month....do I need to create some sort of spreadsheet? It would be so much easier if they were all packaged the same...some have 30 pills, some have 90, some even crazier have a random odd number like 43. Come on, can't they all just have 30??
The 2 new suppplements have done a lot of good....they are GABA and Glyconic DMG. Both of which are supposed to increase cellular activity (hoping for more energy and more brain activity). Lucas told us to watch out for decreased sleep and increased stimming. Stimming, hmm....I don't think I have talked about this before....here's a little lesson.....
Stimming is an easy way to say stimulatory behavior, things he does repetively that "feel good"...his stims come and go, and sometimes reappear. He has a few physical stims, like hand flapping, jumping and squeeling, folding his ears, and one of my favorites, "crazy eyes". He also has some that aren't physical, things like closing doors, flushing toilets, playing with light switches. If you stop and think about it, we all have "stims". Some of mine are chewing ice, picking my nails, messin with my hair, bouncing my legs. Think about it....what are yours? Stims are only bad when they are socially unaccpetable or get in the way of him learning. Well that and of course the ones that really irritate me! The toilet and light switch thing drive me crazy!! We work really hard to try and eliminate most of them, we have some success, but they often come back if we don't stay focused on them.
Okay, where were we...oh yeah, the new sups could cause a lack of sleep and increased stimming. The dosing is 4 pills of each twice a day. We have worked up to 2 pills of each twice a day, and he started sleeping less and seemed to move a little faster. Moving faster..GOOD, sleeping less....not good!! These are both great signs that they are working!! BUT, I'm a little concerned if we move up dosing too fast, we will end up with a crazy kid who doesn't sleep! I'm thinking......we are just going to keep it as is, until he regulates.
Second cool thing....he got his communication device (ACD) and it is SOO COOL!! You may have seen them before, they are generally used for parapalegics or anyone who can't speak. They are working with him at Spectrum on how to use it and have even added his programming to it. He seems to be doing pretty good learning how to use it at school. At home is another story, he tends to just "play" with it rather than actually use it to communicate. Maybe the problem is me....yep, that's usually the case!! :)
He's doing great at Spectrum!! Of course, everyone loves him to pieces! To me, the best part about being in private school, you get to actually celebrate HOLIDAYS!!! YAY, we had a Halloween party on Friday...lots of fun...he was a rocker...or better yet, a Drummer!! Some say he's going to be a famous drummer some day....maybe so, but he needs a drum set, and that just isn't going to happen in this house!! That is unless we convert the garage or put some soundproofing up. He did look totally cool....
This was a super busy day for us, we went straight from the party home to get ready for the Third Day concert. Parker was sick so he didn't get to go, so it was just me and little man. He was already dressed for the occasion, so he just kept sporting the hawk and wearing his black t-shirt and skinny jeans!! He LOVED LOVED LOVED the concert!! He was in awe of all the lights, sounds and of course the rockin' out! He played air guitar and air drums all night long. Very cute!! This was his first concert other than rodeo concerts, which don't really count because that little rotating stage in the center just doesn't qualify as concert-worthy! It was a good night, I love spending time with little dude!
A really cool thing happened at church today, a friend of mine who helps in Promise Land (that's his Sunday school class for special needs kids) said to me...."Wow, I can really see a change in Spencer, what have you been doing with him? He was giving great eye contact and was really engaged in class today." I just love hearing people spontaneously say they have noticed a difference, we easily get into the rut of taking all his progress for granted and start thinking that it's not working, too difficult and start getting lazy. But when you hear that....WHAM, it's like "ahh yeah, it's working!!"
Okay, I'm beat, I'm not even going to proof or spell check....so, sorry if there are mistakes. There are so many more great stories from the past 6 weeks, but I have got to wrap this thing up....another crazy week awaits!!
Until next time....grace, peace, hope, love and prayers!
T
Yet, I am always with you; you hold me by my right hand.
You guide me with your counsel, and afterward you will take me into glory.
Whom have I in heaven but you? And earth has nothing I desire besides you.
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Those who are far from you will perish; you destroy all who are unfaithful to you.
But as for me, it is good to be near God. I have made the Sovereign Lord my refuge; I will tell of all your deeds.
Psalms 73:23-28
Friday, September 4, 2009
Hubba Hubba Ding Dong--Spartans on Three!!
As promised, here begins the story of our week long festivus in Ft. Worth....(things have been moving so fast around our house, that I am finally getting this wrapped up)
Saturday, August 15
Today started out like any typical Saturday morning, except for me KNOWING that I have a VERY long day ahead of me. Spencer and I headed to the YMCA at 7:00 for my 7:30 Step class followed by a little spin at RPM. (He of course was fantastic!! I think we have finally gotten over all that bad behavior at the Y--can I get a yea, yea?). Mike and Parker were able to sleep in a little and then after a big breakfast at Denny's headed to his first football scrimmage of the season. Spencer and I made it to the game about 30 minutes late, but can I say this is looking like an awesome year for the Spartans!!
Parker is very excited this year, because he has finally made the weight limit to be able to carry the ball!! I guess to keep all those "small" kids from being trampled by bigger kids; they have to put rules in place. (Whatever! It's football for Pete's sake they're going to get hit, hurt and trampled on!!) So, if you don't know Parker, coming from a taller than average family, he's (barely) 11 and is 5'2", 120lbs and TOWERS over most of his peers. Oh yeah and my favorite fact about Peej and the one that generally gets a jaw drop, he wears a size 10 1/2 men’s shoe! Can anyone feel my impending doom of having to special order very expensive shoes for him in the not too distant future (should I start the paperwork for the second mortgage now)?? Parker is known on the team as "Manimal" and sometimes "Sasquatch". I digress.... Because of his size his coach has always had to play him at guard or tackle on offense and defensive end on defense with his strength being on defense. But this year, Coach Conley is giving him a shot at tight end and he will continue to hold defensive end on D. I tell you all this to get the picture and know how very excited we are this season and mostly at this first "game"!! I couldn’t wait to see my Peej put to work some of his mad skills!!
About half way through the scrimmage they decided to give him a shot. I generally am at the games "in spirit" as there isn't much watching going on with Spencer around. But this mamma sitting on the sidelines trying to entertain her very hot, cranky, over stimulated and over tired autistic son was not gonna let this play go by with out watching!! (Entertaining Spence at these games is not for the faint of heart and takes every ounce of energy out of me, especially after 2 hours at the gym!) So, the ball is snapped, I see Parker is wide open with arms waving in the air "I'm open" (geez Parker, keep that to yourself don't let the D notice you and block your chance!!) I see the ball go sailing through the air toward him, I cringe, saying to myself "please catch it, please catch it". I almost can't look and like manna from heaven it falls perfectly into his arms and he starts runnin!! And running, and running and running! Now I don't know for sure, since this was a scrimmage and there was no "official" score, but I think it was a TD!! Parker has his first touchdown! What a way to start out this fun filled week, he is on cloud nine!! He also wants me to mention that he also had 4 tackles--he's a defensive guy at heart and I think he was more proud of his tackles (as he should be--you can't win games without a strong D-line)! Hubba Hubba Ding Dong--Go Spartans!!
The game was over about 11, now the smart thing to do here, is load up the car and head out of town. We have a 4 hour drive ahead of us to get to my dad's in Ft. Worth. But noooooooo, Parker's buddy on his football team was having a birthday party at Laser Quest and they had rented a Hummer limo to take the boys. After some begging and pleading, I agreed and off he and Mike went to the birthday party. Gotta stop here, you are probably wondering why me sweet husband is tagging along to a kids birthday party....maybe I don't need to answer that....Hummer limo and Laser tag??? Of course he's going. (He's pretty tight with the birthday boy's Dad and I think there may have been some sort of dad smack talk goin on during the scrimmage--probably, no DEFINATELY!!)
Spence and I head home with lots to do to get ready for the trip. First off, remember Mike and I am Bible Study Directors?? Well, at the last Director's meeting (which Mike goes to solo), Brad gave an "assignment" that each Director had to set "Goals" for each area of leadership. What do I hear from my sweet husband when he came home from this meeting..."Sweetheart, WE need to come up with goals for the class." Brad had given the group some "examples" (some of which were 17 pages long) and I think when Mike first saw them was a little overwhelmed (wouldn't you be??) But me being the over committer said, "Don't worry honey, I'm all over it!", besides I do leadership training and writing for a living, so this is right up my alley. Now, little did I know that they had to be sent to Brad by THAT day, but no worries I would get it done. I was actually VERY blessed that they went to the party, because in the peace and quiet of my home office I sat for 3 hours and devised a grand plan for our class....let me tell you I was very proud of my handy work and couldn't wait to show it to my beloved!! Once done, I got to packin'. I'm a little weird, because I love to pack...I mean I even loved packing the house when we moved a few years ago---I know crazy, but that's me! =) However, packing for this trip was a feat!! This was the first time we have traveled since on the diet, smoothies, supplements and B12 shots. So this involved not only clothes, pillows, video games and an array of other road trip paraphernalia, but also a couple of coolers, bags of groceries, the Magic Bullet, a stash of supplements, and VERY carefully packaged 3 needles full of precious B12. But we got it done!
With the OnDemand Goals done, bags packed and everything loaded in the car, we wait.....about 5:00 the bigs return from the party. I very proudly show my honey the goals and he is blown away!! (At least that's what I tell myself..tee hee!!). The kids and I jump in the car, kiss daddy goodbye and are on our way....anticipated arrival time in Ft. Worth 9:00ish.
Stay tuned for the actual drive...Peej and I had some interesting conversations!!
Until next time....grace, peace, hope, love and prayers!
T
Everything we have--right thinking and right living, a clean slate and a fresh start--comes from God by way of Jesus Christ.
The Message--1 Corinthians 1:30
Saturday, August 15
Today started out like any typical Saturday morning, except for me KNOWING that I have a VERY long day ahead of me. Spencer and I headed to the YMCA at 7:00 for my 7:30 Step class followed by a little spin at RPM. (He of course was fantastic!! I think we have finally gotten over all that bad behavior at the Y--can I get a yea, yea?). Mike and Parker were able to sleep in a little and then after a big breakfast at Denny's headed to his first football scrimmage of the season. Spencer and I made it to the game about 30 minutes late, but can I say this is looking like an awesome year for the Spartans!!
Parker is very excited this year, because he has finally made the weight limit to be able to carry the ball!! I guess to keep all those "small" kids from being trampled by bigger kids; they have to put rules in place. (Whatever! It's football for Pete's sake they're going to get hit, hurt and trampled on!!) So, if you don't know Parker, coming from a taller than average family, he's (barely) 11 and is 5'2", 120lbs and TOWERS over most of his peers. Oh yeah and my favorite fact about Peej and the one that generally gets a jaw drop, he wears a size 10 1/2 men’s shoe! Can anyone feel my impending doom of having to special order very expensive shoes for him in the not too distant future (should I start the paperwork for the second mortgage now)?? Parker is known on the team as "Manimal" and sometimes "Sasquatch". I digress.... Because of his size his coach has always had to play him at guard or tackle on offense and defensive end on defense with his strength being on defense. But this year, Coach Conley is giving him a shot at tight end and he will continue to hold defensive end on D. I tell you all this to get the picture and know how very excited we are this season and mostly at this first "game"!! I couldn’t wait to see my Peej put to work some of his mad skills!!
About half way through the scrimmage they decided to give him a shot. I generally am at the games "in spirit" as there isn't much watching going on with Spencer around. But this mamma sitting on the sidelines trying to entertain her very hot, cranky, over stimulated and over tired autistic son was not gonna let this play go by with out watching!! (Entertaining Spence at these games is not for the faint of heart and takes every ounce of energy out of me, especially after 2 hours at the gym!) So, the ball is snapped, I see Parker is wide open with arms waving in the air "I'm open" (geez Parker, keep that to yourself don't let the D notice you and block your chance!!) I see the ball go sailing through the air toward him, I cringe, saying to myself "please catch it, please catch it". I almost can't look and like manna from heaven it falls perfectly into his arms and he starts runnin!! And running, and running and running! Now I don't know for sure, since this was a scrimmage and there was no "official" score, but I think it was a TD!! Parker has his first touchdown! What a way to start out this fun filled week, he is on cloud nine!! He also wants me to mention that he also had 4 tackles--he's a defensive guy at heart and I think he was more proud of his tackles (as he should be--you can't win games without a strong D-line)! Hubba Hubba Ding Dong--Go Spartans!!
The game was over about 11, now the smart thing to do here, is load up the car and head out of town. We have a 4 hour drive ahead of us to get to my dad's in Ft. Worth. But noooooooo, Parker's buddy on his football team was having a birthday party at Laser Quest and they had rented a Hummer limo to take the boys. After some begging and pleading, I agreed and off he and Mike went to the birthday party. Gotta stop here, you are probably wondering why me sweet husband is tagging along to a kids birthday party....maybe I don't need to answer that....Hummer limo and Laser tag??? Of course he's going. (He's pretty tight with the birthday boy's Dad and I think there may have been some sort of dad smack talk goin on during the scrimmage--probably, no DEFINATELY!!)
Spence and I head home with lots to do to get ready for the trip. First off, remember Mike and I am Bible Study Directors?? Well, at the last Director's meeting (which Mike goes to solo), Brad gave an "assignment" that each Director had to set "Goals" for each area of leadership. What do I hear from my sweet husband when he came home from this meeting..."Sweetheart, WE need to come up with goals for the class." Brad had given the group some "examples" (some of which were 17 pages long) and I think when Mike first saw them was a little overwhelmed (wouldn't you be??) But me being the over committer said, "Don't worry honey, I'm all over it!", besides I do leadership training and writing for a living, so this is right up my alley. Now, little did I know that they had to be sent to Brad by THAT day, but no worries I would get it done. I was actually VERY blessed that they went to the party, because in the peace and quiet of my home office I sat for 3 hours and devised a grand plan for our class....let me tell you I was very proud of my handy work and couldn't wait to show it to my beloved!! Once done, I got to packin'. I'm a little weird, because I love to pack...I mean I even loved packing the house when we moved a few years ago---I know crazy, but that's me! =) However, packing for this trip was a feat!! This was the first time we have traveled since on the diet, smoothies, supplements and B12 shots. So this involved not only clothes, pillows, video games and an array of other road trip paraphernalia, but also a couple of coolers, bags of groceries, the Magic Bullet, a stash of supplements, and VERY carefully packaged 3 needles full of precious B12. But we got it done!
With the OnDemand Goals done, bags packed and everything loaded in the car, we wait.....about 5:00 the bigs return from the party. I very proudly show my honey the goals and he is blown away!! (At least that's what I tell myself..tee hee!!). The kids and I jump in the car, kiss daddy goodbye and are on our way....anticipated arrival time in Ft. Worth 9:00ish.
Stay tuned for the actual drive...Peej and I had some interesting conversations!!
Until next time....grace, peace, hope, love and prayers!
T
Everything we have--right thinking and right living, a clean slate and a fresh start--comes from God by way of Jesus Christ.
The Message--1 Corinthians 1:30
Thursday, September 3, 2009
Thoughtful House Part 3
Tuesday we had another follow up with Lucas at Thoughtful House. Let me just say, I love him so much, he is so very awesome, not only in all his knowledge about Autism, but he is loads of fun to talk to! Well of course he is at $300 an hour. Anyway, because of my very busy schedule right now, we decided to do the appointment via phone rather than drive all the way to Austin. It proved to work out just fine, but the enormous amount of information he gave me is mind boggling!! It's a big task, but I’m gonna TRY and give you all the jist of what's going on and where we are going after today's appointment....
Great Things
First we started out talking about the "Great" things that are going on. This was pretty funny because when I sent over my pre-appointment questionnaire, I left that part blank. So of course Lucas was like, "okay what's up, you filled everything out but that part." I think he was a little more than concerned. But of course it wasn't that we aren't seeing any "great" things, it's just we are seeing a lot of little things that are all pretty hard to describe. I told him to sum it up, the most noticeable thing is, he seems to be feeling better. I would have never in the past said he was in "pain", but now looking back I sort of think he was. He had a big bloated belly all the time and would lean over the arm of the couch (which duh, now I know he was trying to relieve the pressure on his tummy). I think this contributed some to his aggressive behavior, (okay, if you know little man, he doesn't have extreme aggression but comparing pre-treatment to now, he for sure had some). Of course I never thought all this "posturing" and aggressiveness was because he hurt, but looking at him now, I really think he was. The "Great" news is now both of those things are gone!
Let's Talk Poo
So on to talk about poo and boy did we talk about poo!! How often, how much, what shape, sticky or smooth, wet or dry, was there undigested food, what color, what did it smell like. You know you can sure have a lot of fun talking about poo...I should have had my 11 year old do it, as we all know boys at that age like to talk about bodily functions that involve the back side!! :)
Diet, Meds and Supplements
Next we talked about the diet and supplements and what we are seeing there. Really nothing to report, his biggest concern was with the B12 shots, I guess they can have a tendency to cause sleep issues (which he did NOT warn me of before...hmmmm, maybe he did that on purpose?!). But no sleep problems, he's always been a great sleeper (knock on wood). So good news there, we don't have to change anything just keep doing what we are doing.
We then talked about the rounds of antibiotics and diflucan and if you remember the Great Escape from the YMCA, they caused a little disruption (okay a lot of big bad aggressiveness), but all of that is gone. Lucas said that all this was evidence that the meds did their job and the issues were due to "die off" of the bugs and yeast. Yippee!! This means we are done (for now) with those things. He only suggested that if we want he can start taking a digestive enzyme to help his body further breakdown his food and aide in better digestion. But he said he really didn't think it was essential and we could skip it for now. (So we are...just so we can use the $$ on things that are more effective.)
Next Steps--Big Boy Meds
Lucas said based on everything we are doing, his "gut" is stable enough to get on with some serious "big boy" meds (his words, not mine--a little scary??) So we are moving on to the next big step and will do some "challenge tests" to determine what type of chelation will work best.
Chelation
Okay, quick lesson on chelation (feel free to Google, if you want to see all the good, bad and ugly of it). It is somewhat controversial, because of what it does. Think of it as a magnet, you take the "chelator" (magnet) and it attracts any and all heavy metals to it as it travels through and out your body. The concern is that there are some "metals" that we need (zinc, iron, magnesium etc) and the chelator can't tell which is which so it takes all of them with it; leaving a risk of mineral deficiency. To offset this you increase intake of those metals, and take them far enough outside of "chelating" so that they don't get "pulled" from his body. Spencer is currently on all three as a smoothie supplement. Why do they treat Autism this way? Well, most ASD kids have trouble ridding their bodies of heavy metals; therefore, heavy metal burden is one of the prevailing theories behind Autism. Just do some research on vaccines and Autism...theory there is the "metals" that are used (thimerisol being the biggest culprit) become too big of a burden for some kids bodies to handle and thus cause brain dysfunction. Heavy metal toxicity has been proven to cause brain disorders. Enough of all that mumbo jumbo.
Challenge Tests
Basically a challenge test is done to see if and how much "heavy metal" is being dumped from his system. To get a true read on this we have to collect every bit of urine for 6 hours. (Mind you Lucas said if he happens to have an "accident" or we "miss" any, we have to start all over again.) From there we shake it all up and take a little bit and send it in to be tested. So that's a challenge test, we get to do this several times throughout this process, so keep that in mind! :) YAY!
Testing and Treatment Plan
The testing phase goes something like this....
Step 1: First challenge test--we need 6 hours worth of urine, so Lucas suggested we do it on the weekend, yeah right! We are so busy I can't imagine having to try and do this "on the run" so needless to say, Louie and I will be holed up at home for a day. No biggie, we can do it.
From this test, they will check his metals to see if his body is riding itself of them and how much. Now, if the test comes back with zero metals, that doesn't mean he doesn't have metals, it really means his body ISN'T getting rid of them. So no metals is actually bad.
Step 2: Suppository Chelator--we will then do 3 rounds of suppository chelator. I will seriously spare you the conversation Lucas and I had about this! It was funny, embarrassing and not something I care to bring back to life here! I will say that each suppository has to "stay in" for an hour. If you know Spencer any thing that goes anywhere around "that area" and it's all over--poo city!!! So to make sure they "stay in", we have to do a "pre-suppository" suppository to clean him out. UGH!! If per chance it doesn't stay in, we have to start all over again, but have to wait a few days before we do so, because he needs to be empty of chelator before you start. This goes on for 3 days in a row.
Step 3: Challenge test post chelator--this is the same test, but this time we will hopefully be able to get a read on what metals and how much the chelator can "pull".
Step 4: We will next travel to Austin for a blood draw to test liver, kidney and blood "health" (counts & levels) to see if he can handle Chelation treatment. They will keep an eye on these throughout treatment.
Step 5: While in Austin, we will do one round of IV Chelation, followed by 2 rounds of suppository chelation and then another challenge test.
So after all that, we look at if and which treatment is most effective and will then decide how we want to move forward.
Goods and Bads
Suppository chelation is pretty inexpensive and can be done at home.
IV Chelation CAN be more effective (not always) and requires a trip to Austin twice and month and costs a little more.
Long Term Outlook for Chelation
Chelation is one of the most aggressive and effective treatments for Autism.....IF (big if) the child's symptoms stem from heavy metal toxicity. Of course we won't know about that for Spencer until we get this treatment underway. There are kids Lucas sees that chelated for 3 months and now have stopped because the child was able to start moving metals on his own and had made great progress very quickly. He also has some kids that are going on 2 years of chelation and have seen very slow but steady improvement. Lucas has seen all sorts of improvement with chelation anything from talking to improved attention and behavior.
My Expectations
What are my expectations for Spencer? I pray for the best and expect very little. I know that sounds a little less than optimistic (from someone who is an incurable optimist!), but in the world of Autism, there isn't a magic bullet, there isn't anything you can take or do that will cure it. On top of that, there are TONS of treatments that claim big things and yet just a handful of people see any change. But, I trust Thoughtful House and know they are the best and most knowledge. I'm also confident that they will lead us down the right path, are very thorough and will not keep us on a treatment that's only moderately effective. That's why we finally decided to bite the bullet and go to them for help. I figure we will give all this a shot for a year and then decide if it's worth it. It's a lot of work and isn't cheap. But for now, we are seeing good things so I am feeling pretty hopeful about it.
Please keep us in your prayers as we journey down this next road, it is going to test my patience and my will!
Until next time....grace, peace, hope, love and prayers!
T
Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight.
Proverbs 3:5-6
Great Things
First we started out talking about the "Great" things that are going on. This was pretty funny because when I sent over my pre-appointment questionnaire, I left that part blank. So of course Lucas was like, "okay what's up, you filled everything out but that part." I think he was a little more than concerned. But of course it wasn't that we aren't seeing any "great" things, it's just we are seeing a lot of little things that are all pretty hard to describe. I told him to sum it up, the most noticeable thing is, he seems to be feeling better. I would have never in the past said he was in "pain", but now looking back I sort of think he was. He had a big bloated belly all the time and would lean over the arm of the couch (which duh, now I know he was trying to relieve the pressure on his tummy). I think this contributed some to his aggressive behavior, (okay, if you know little man, he doesn't have extreme aggression but comparing pre-treatment to now, he for sure had some). Of course I never thought all this "posturing" and aggressiveness was because he hurt, but looking at him now, I really think he was. The "Great" news is now both of those things are gone!
Let's Talk Poo
So on to talk about poo and boy did we talk about poo!! How often, how much, what shape, sticky or smooth, wet or dry, was there undigested food, what color, what did it smell like. You know you can sure have a lot of fun talking about poo...I should have had my 11 year old do it, as we all know boys at that age like to talk about bodily functions that involve the back side!! :)
Diet, Meds and Supplements
Next we talked about the diet and supplements and what we are seeing there. Really nothing to report, his biggest concern was with the B12 shots, I guess they can have a tendency to cause sleep issues (which he did NOT warn me of before...hmmmm, maybe he did that on purpose?!). But no sleep problems, he's always been a great sleeper (knock on wood). So good news there, we don't have to change anything just keep doing what we are doing.
We then talked about the rounds of antibiotics and diflucan and if you remember the Great Escape from the YMCA, they caused a little disruption (okay a lot of big bad aggressiveness), but all of that is gone. Lucas said that all this was evidence that the meds did their job and the issues were due to "die off" of the bugs and yeast. Yippee!! This means we are done (for now) with those things. He only suggested that if we want he can start taking a digestive enzyme to help his body further breakdown his food and aide in better digestion. But he said he really didn't think it was essential and we could skip it for now. (So we are...just so we can use the $$ on things that are more effective.)
Next Steps--Big Boy Meds
Lucas said based on everything we are doing, his "gut" is stable enough to get on with some serious "big boy" meds (his words, not mine--a little scary??) So we are moving on to the next big step and will do some "challenge tests" to determine what type of chelation will work best.
Chelation
Okay, quick lesson on chelation (feel free to Google, if you want to see all the good, bad and ugly of it). It is somewhat controversial, because of what it does. Think of it as a magnet, you take the "chelator" (magnet) and it attracts any and all heavy metals to it as it travels through and out your body. The concern is that there are some "metals" that we need (zinc, iron, magnesium etc) and the chelator can't tell which is which so it takes all of them with it; leaving a risk of mineral deficiency. To offset this you increase intake of those metals, and take them far enough outside of "chelating" so that they don't get "pulled" from his body. Spencer is currently on all three as a smoothie supplement. Why do they treat Autism this way? Well, most ASD kids have trouble ridding their bodies of heavy metals; therefore, heavy metal burden is one of the prevailing theories behind Autism. Just do some research on vaccines and Autism...theory there is the "metals" that are used (thimerisol being the biggest culprit) become too big of a burden for some kids bodies to handle and thus cause brain dysfunction. Heavy metal toxicity has been proven to cause brain disorders. Enough of all that mumbo jumbo.
Challenge Tests
Basically a challenge test is done to see if and how much "heavy metal" is being dumped from his system. To get a true read on this we have to collect every bit of urine for 6 hours. (Mind you Lucas said if he happens to have an "accident" or we "miss" any, we have to start all over again.) From there we shake it all up and take a little bit and send it in to be tested. So that's a challenge test, we get to do this several times throughout this process, so keep that in mind! :) YAY!
Testing and Treatment Plan
The testing phase goes something like this....
Step 1: First challenge test--we need 6 hours worth of urine, so Lucas suggested we do it on the weekend, yeah right! We are so busy I can't imagine having to try and do this "on the run" so needless to say, Louie and I will be holed up at home for a day. No biggie, we can do it.
From this test, they will check his metals to see if his body is riding itself of them and how much. Now, if the test comes back with zero metals, that doesn't mean he doesn't have metals, it really means his body ISN'T getting rid of them. So no metals is actually bad.
Step 2: Suppository Chelator--we will then do 3 rounds of suppository chelator. I will seriously spare you the conversation Lucas and I had about this! It was funny, embarrassing and not something I care to bring back to life here! I will say that each suppository has to "stay in" for an hour. If you know Spencer any thing that goes anywhere around "that area" and it's all over--poo city!!! So to make sure they "stay in", we have to do a "pre-suppository" suppository to clean him out. UGH!! If per chance it doesn't stay in, we have to start all over again, but have to wait a few days before we do so, because he needs to be empty of chelator before you start. This goes on for 3 days in a row.
Step 3: Challenge test post chelator--this is the same test, but this time we will hopefully be able to get a read on what metals and how much the chelator can "pull".
Step 4: We will next travel to Austin for a blood draw to test liver, kidney and blood "health" (counts & levels) to see if he can handle Chelation treatment. They will keep an eye on these throughout treatment.
Step 5: While in Austin, we will do one round of IV Chelation, followed by 2 rounds of suppository chelation and then another challenge test.
So after all that, we look at if and which treatment is most effective and will then decide how we want to move forward.
Goods and Bads
Suppository chelation is pretty inexpensive and can be done at home.
IV Chelation CAN be more effective (not always) and requires a trip to Austin twice and month and costs a little more.
Long Term Outlook for Chelation
Chelation is one of the most aggressive and effective treatments for Autism.....IF (big if) the child's symptoms stem from heavy metal toxicity. Of course we won't know about that for Spencer until we get this treatment underway. There are kids Lucas sees that chelated for 3 months and now have stopped because the child was able to start moving metals on his own and had made great progress very quickly. He also has some kids that are going on 2 years of chelation and have seen very slow but steady improvement. Lucas has seen all sorts of improvement with chelation anything from talking to improved attention and behavior.
My Expectations
What are my expectations for Spencer? I pray for the best and expect very little. I know that sounds a little less than optimistic (from someone who is an incurable optimist!), but in the world of Autism, there isn't a magic bullet, there isn't anything you can take or do that will cure it. On top of that, there are TONS of treatments that claim big things and yet just a handful of people see any change. But, I trust Thoughtful House and know they are the best and most knowledge. I'm also confident that they will lead us down the right path, are very thorough and will not keep us on a treatment that's only moderately effective. That's why we finally decided to bite the bullet and go to them for help. I figure we will give all this a shot for a year and then decide if it's worth it. It's a lot of work and isn't cheap. But for now, we are seeing good things so I am feeling pretty hopeful about it.
Please keep us in your prayers as we journey down this next road, it is going to test my patience and my will!
Until next time....grace, peace, hope, love and prayers!
T
Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight.
Proverbs 3:5-6
Monday, August 31, 2009
To Vaccinate or Not Vaccinate....that's NOT the question!
Last night Matt Lauer and NBC aired an episode on Dateline titled "A Dose of Controversy". Here's the show in a nut shell....
NBC News' Matt Lauer will take an unprecedented look at the emotional debate surrounding vaccines and the suggested link to autism on Sunday, August 30 at 7 p.m. ET with "Dose of Controversy." In the one-hour Dateline, Lauer speaks exclusively with Dr. Andrew Wakefield, whose 1998 medical study was the first in the world to suggest a possible link between the MMR vaccine and autism. The British doctor has since influenced the lives and stirred the passions of millions of parents worldwide looking to solve the mystery of what causes the complex developmental disorder.
But Dr. Wakefield's theories have also raised serious questions from the media and the medical community. Lauer interviews investigative journalist Brian Deer who wrote a critical report for London's Sunday Times in 2004 detailing what he said were potential conflicts of interest that Dr. Wakefield had never revealed. Lauer also talks with Dr. Paul Offit, a pediatrician at Children's Hospital of Philadelphia and expert on vaccines who has spoken out on behalf of vaccine safety in the United States.
Now, Dr. Wakefield reacts to his harshest critics on the controversy that began over a decade ago.
Lauer also reports on Dr. Wakefield's most recent work in the United States and the medical community's continuing search for the cause of autism, including new studies from researchers working to understand the disorder that affects 1 in 150 American children.
Friends, I am not a Doctor (duh, you knew that) and I don't claim to know everything there is to know about this topic. I am a parent of a child with Autism and here are my reactions from the show....
First off, why is Mr. Deer SOOO intent on discrediting Dr. Wakefield? It just smells really fishy to me!! For pete's sake, he's a reporter, not a doctor and all Dr. Wakefield is suggesting is an alternate vaccine schedule. He's not saying "Don't Vaccinate"!! My question, who is Mr. Deer working for? And why is he so caught up in this?
Dr. Wakefield's "alleged" conflict of interest
Mr Deer claims there is a conflict of interest because Dr. W was paid $750K to be a medical witness in a class action lawsuit surrounding the vaccine controversy. Is Mr. Deer suggesting that he is being bribed and paid off to make these claims? I ask you....if you were a highly regarded physician (and I'm sure very highly compensated) would you take a bribe of $750K to falsify claims only to put your reputation on the line? I would guess not, that really isn't a large enough sum of money to "lie" about something and potentially ruin your career.
Mr Deer also claimed that Dr. W was working on an alternate "vaccine" to the MMR. Alleging that Dr. W was trying to discredit the MMR so that his "new" vaccine would take it's place. Thank you Dateline for allowing Dr. W to squash this claim. Dr. W in fact was obtaining a patent for a treatment that would HELP those whose bodies aren't able rid itself of the MMR strains. Thus helping anyone who contracts these diseases, or who I would guess have an adverse reaction to the MMR vaccine. Therefore, he is in fact NOT competing with the vaccine but making it more "safe". I don't see a conflict of interest there, what I see is someone who is trying to help make the MMR safer!!
Dr. Offit
Seriosly NBC could you not find a more credible person? This guy has such a vested interest in vaccines, it's dispicable that you would even consider interviewing him for this piece! Dr. Offit holds the patent for the Rotateq vaccine and has millions of dollars at stake personally counting on public confidence in the vaccine program! Doubly sickening is the Rotateq vaccine is to protect from the rotavirus an illness that at worse causes diarrhea! Why the hell are we vaccinating against diarhhea in the first place! Just go to El Salvador and drink the water and you'll get the D, I don't see us spending millions to help make the water safer there!
Thoughtful House
Dr. Wakefield is one of the back bone, ground breaking pyhscians who brought to us the biomedical treatment protocol that has helped thousands of children and in some cases curing children, something unthinkable 10 years ago! Since coming to the US, Dr. W founded TH and now oversees the pracitce with several other maverick doctors. In the episode they sadly downplayed what Thoughtful House is doing and therefore discredited how many children they have helped. They even suggested that the link between Autism and GI dysfunction was a load of crap. That may be true, but what I do know is what I have seen in my own child since we started in May. Six months ago I had a child that was gradually getting worse and worse as the years went on. He screamed every time we got in the car, would hit to get his way, would lean over the couch arm to relieve the pressure on his gut, etc. Spencer had chronic constipation and would only BM about once every 4-5 days. He was in PAIN and was starting to severely act out because of it! At 8 years old enough was enough and I made the last final leap of faith to help him and it has been worth every penny, every sleepless night, every late night baking bread!! No, Spencer still doesn't talk and still wears a pull up, but he's HAPPY and enjoys life so much more!! He's finally pain free, he has a BM everyday, and is much more an engaged part of our family!! Is there a link between ASD and GI dysfuntion, maybe not, but my ASD kid had a serious GI issue and we are on our way to correcting it, thanks to Thoughtful House and Dr. Wakefield.
Research
On the topic of "research" think about this.....the Dateline show stated that $122 million was being spent to research the causes of Autism let's contrast that to the $4 billion that was recently spent on the "Cash for Clunkers" program. Think what you will about this fact. In 2006 the number of children with Autism was 1 in 250, 2 short years later, in 2008, the number was 1 in 150 and today estimates are closer to 1 in 100. They say the Swine Flu is a pandemic....that is LAUGHABLE compared to the stagering cases of children with Autism. These children will grow to be adults, then what??? I would say that $4 billion would have been better spent elsewhere?!
My take on the vaccine debate:
Many people have asked our opinion on this and my answer is....no, we do not believe Spencer's Autism was due to the MMR or any vaccine for that matter. Spencer has always been different and special. I DO believe however that our country OVER vaccinates. Did you know that veterinarians were at one time giving 6-7 vaccines to our household pets, but because of the adverse reactions they have now trimmed it down to only 3. There ARE children out there that have been adversely affected by the MMR vaccine. I praise God we haven't had to endure what many other parents of ASD kids have had to go through. We have not had to experience the heart wrenching saga of walking into the doctors office with a perfectly healthy, normally developing child, allowing the child to receive a "safe" vaccine and within days watch as he retreats into the hell of Autism. To many parents, and many friends of mine, this is reality! Yes, the medical community has "tried" to replicate what many parents have seen in their children none of which have been able to do so. But I ask you, who would you believe more, the medical community (that has a vested interest in the vaccine schedule) or a parent that struggles daily with a child that was at one time "normal" with nothing to gain except to help other families avoid enduring the hell they are dealing with?
My advice to new parents:
Think about this....Dr. Wakefield suggests that there COULD be a link between the combo vaccine MMR and Autism. He does NOT say to not vaccinate. He proposes instead a more conservative vaccine schedule. I agreee 100%. I would NOT subject my child, by not vaccinating him, to a life threatening illness such as the Measles or Polio and risk death.
Some facts.....Did you know that by the time a child is 6 years old, s/he has received 36 vaccines? Now you probably don't realize this because they have created combo and supercombo vaccines that contain multiple vaccines into one, so you may be thinking they only get about 10 or 12. Remember also, a vaccine is a live strain of the disease you are vaccinating against. So, you are essential putting into a small child, with a developing immune system....36 strains of viruses. Did you also know that of the 36 vaccines 2 are for Chicken Pox, a disease that most of us got as a child and were lucky enough to stay home from school for a week, have mom wait on us hand and foot and we were fine! Another 2 are for the Rotovirus an illness that causes diarhhea, seriously last I checked that isn't a life threatening illness. Why then are we exposing our tiny babies to these 2 illnesses when neither are life threatening (in most cases)?
In closing....
New parents, find a Ped who follows an alternate vaccine schedule, but do NOT and I repeat do not NOT vaccinate!!
Everyone else....do your research on the Swine Flu. There's some really shocking and surprising information about that "new" vaccine!! I will NOT be giving it to my kids! We will wash our hands, practice good hygiene and if we get the Swine, we will treat the flu symptoms like we do any other time we have had the flu. (To see an indepth article on the Swine Flu conspiracy, email me tamieichenberger@hotmail.com and I'll send it your way. SHOCKING VERY SHOCKING!!)
As an aside, we have a follow up appointment at Thoughtful House tomorrow, so stay tuned to find out what else we get to add to our treatment protocol.
Check out Spencer's new Faux Hawk!
Until next time....grace, pleace, hope, love and prayers!
T
NBC News' Matt Lauer will take an unprecedented look at the emotional debate surrounding vaccines and the suggested link to autism on Sunday, August 30 at 7 p.m. ET with "Dose of Controversy." In the one-hour Dateline, Lauer speaks exclusively with Dr. Andrew Wakefield, whose 1998 medical study was the first in the world to suggest a possible link between the MMR vaccine and autism. The British doctor has since influenced the lives and stirred the passions of millions of parents worldwide looking to solve the mystery of what causes the complex developmental disorder.
But Dr. Wakefield's theories have also raised serious questions from the media and the medical community. Lauer interviews investigative journalist Brian Deer who wrote a critical report for London's Sunday Times in 2004 detailing what he said were potential conflicts of interest that Dr. Wakefield had never revealed. Lauer also talks with Dr. Paul Offit, a pediatrician at Children's Hospital of Philadelphia and expert on vaccines who has spoken out on behalf of vaccine safety in the United States.
Now, Dr. Wakefield reacts to his harshest critics on the controversy that began over a decade ago.
Lauer also reports on Dr. Wakefield's most recent work in the United States and the medical community's continuing search for the cause of autism, including new studies from researchers working to understand the disorder that affects 1 in 150 American children.
Friends, I am not a Doctor (duh, you knew that) and I don't claim to know everything there is to know about this topic. I am a parent of a child with Autism and here are my reactions from the show....
First off, why is Mr. Deer SOOO intent on discrediting Dr. Wakefield? It just smells really fishy to me!! For pete's sake, he's a reporter, not a doctor and all Dr. Wakefield is suggesting is an alternate vaccine schedule. He's not saying "Don't Vaccinate"!! My question, who is Mr. Deer working for? And why is he so caught up in this?
Dr. Wakefield's "alleged" conflict of interest
Mr Deer claims there is a conflict of interest because Dr. W was paid $750K to be a medical witness in a class action lawsuit surrounding the vaccine controversy. Is Mr. Deer suggesting that he is being bribed and paid off to make these claims? I ask you....if you were a highly regarded physician (and I'm sure very highly compensated) would you take a bribe of $750K to falsify claims only to put your reputation on the line? I would guess not, that really isn't a large enough sum of money to "lie" about something and potentially ruin your career.
Mr Deer also claimed that Dr. W was working on an alternate "vaccine" to the MMR. Alleging that Dr. W was trying to discredit the MMR so that his "new" vaccine would take it's place. Thank you Dateline for allowing Dr. W to squash this claim. Dr. W in fact was obtaining a patent for a treatment that would HELP those whose bodies aren't able rid itself of the MMR strains. Thus helping anyone who contracts these diseases, or who I would guess have an adverse reaction to the MMR vaccine. Therefore, he is in fact NOT competing with the vaccine but making it more "safe". I don't see a conflict of interest there, what I see is someone who is trying to help make the MMR safer!!
Dr. Offit
Seriosly NBC could you not find a more credible person? This guy has such a vested interest in vaccines, it's dispicable that you would even consider interviewing him for this piece! Dr. Offit holds the patent for the Rotateq vaccine and has millions of dollars at stake personally counting on public confidence in the vaccine program! Doubly sickening is the Rotateq vaccine is to protect from the rotavirus an illness that at worse causes diarrhea! Why the hell are we vaccinating against diarhhea in the first place! Just go to El Salvador and drink the water and you'll get the D, I don't see us spending millions to help make the water safer there!
Thoughtful House
Dr. Wakefield is one of the back bone, ground breaking pyhscians who brought to us the biomedical treatment protocol that has helped thousands of children and in some cases curing children, something unthinkable 10 years ago! Since coming to the US, Dr. W founded TH and now oversees the pracitce with several other maverick doctors. In the episode they sadly downplayed what Thoughtful House is doing and therefore discredited how many children they have helped. They even suggested that the link between Autism and GI dysfunction was a load of crap. That may be true, but what I do know is what I have seen in my own child since we started in May. Six months ago I had a child that was gradually getting worse and worse as the years went on. He screamed every time we got in the car, would hit to get his way, would lean over the couch arm to relieve the pressure on his gut, etc. Spencer had chronic constipation and would only BM about once every 4-5 days. He was in PAIN and was starting to severely act out because of it! At 8 years old enough was enough and I made the last final leap of faith to help him and it has been worth every penny, every sleepless night, every late night baking bread!! No, Spencer still doesn't talk and still wears a pull up, but he's HAPPY and enjoys life so much more!! He's finally pain free, he has a BM everyday, and is much more an engaged part of our family!! Is there a link between ASD and GI dysfuntion, maybe not, but my ASD kid had a serious GI issue and we are on our way to correcting it, thanks to Thoughtful House and Dr. Wakefield.
Research
On the topic of "research" think about this.....the Dateline show stated that $122 million was being spent to research the causes of Autism let's contrast that to the $4 billion that was recently spent on the "Cash for Clunkers" program. Think what you will about this fact. In 2006 the number of children with Autism was 1 in 250, 2 short years later, in 2008, the number was 1 in 150 and today estimates are closer to 1 in 100. They say the Swine Flu is a pandemic....that is LAUGHABLE compared to the stagering cases of children with Autism. These children will grow to be adults, then what??? I would say that $4 billion would have been better spent elsewhere?!
My take on the vaccine debate:
Many people have asked our opinion on this and my answer is....no, we do not believe Spencer's Autism was due to the MMR or any vaccine for that matter. Spencer has always been different and special. I DO believe however that our country OVER vaccinates. Did you know that veterinarians were at one time giving 6-7 vaccines to our household pets, but because of the adverse reactions they have now trimmed it down to only 3. There ARE children out there that have been adversely affected by the MMR vaccine. I praise God we haven't had to endure what many other parents of ASD kids have had to go through. We have not had to experience the heart wrenching saga of walking into the doctors office with a perfectly healthy, normally developing child, allowing the child to receive a "safe" vaccine and within days watch as he retreats into the hell of Autism. To many parents, and many friends of mine, this is reality! Yes, the medical community has "tried" to replicate what many parents have seen in their children none of which have been able to do so. But I ask you, who would you believe more, the medical community (that has a vested interest in the vaccine schedule) or a parent that struggles daily with a child that was at one time "normal" with nothing to gain except to help other families avoid enduring the hell they are dealing with?
My advice to new parents:
Think about this....Dr. Wakefield suggests that there COULD be a link between the combo vaccine MMR and Autism. He does NOT say to not vaccinate. He proposes instead a more conservative vaccine schedule. I agreee 100%. I would NOT subject my child, by not vaccinating him, to a life threatening illness such as the Measles or Polio and risk death.
Some facts.....Did you know that by the time a child is 6 years old, s/he has received 36 vaccines? Now you probably don't realize this because they have created combo and supercombo vaccines that contain multiple vaccines into one, so you may be thinking they only get about 10 or 12. Remember also, a vaccine is a live strain of the disease you are vaccinating against. So, you are essential putting into a small child, with a developing immune system....36 strains of viruses. Did you also know that of the 36 vaccines 2 are for Chicken Pox, a disease that most of us got as a child and were lucky enough to stay home from school for a week, have mom wait on us hand and foot and we were fine! Another 2 are for the Rotovirus an illness that causes diarhhea, seriously last I checked that isn't a life threatening illness. Why then are we exposing our tiny babies to these 2 illnesses when neither are life threatening (in most cases)?
In closing....
New parents, find a Ped who follows an alternate vaccine schedule, but do NOT and I repeat do not NOT vaccinate!!
Everyone else....do your research on the Swine Flu. There's some really shocking and surprising information about that "new" vaccine!! I will NOT be giving it to my kids! We will wash our hands, practice good hygiene and if we get the Swine, we will treat the flu symptoms like we do any other time we have had the flu. (To see an indepth article on the Swine Flu conspiracy, email me tamieichenberger@hotmail.com and I'll send it your way. SHOCKING VERY SHOCKING!!)
As an aside, we have a follow up appointment at Thoughtful House tomorrow, so stay tuned to find out what else we get to add to our treatment protocol.
Check out Spencer's new Faux Hawk!
Until next time....grace, pleace, hope, love and prayers!
T
Sunday, August 23, 2009
Saying Goodbye to Summer, Over Commitment, Nothing's Too Small and a Compass
Tomorrow is August 24th and if you are a parent of a student or a student yourself, you probably fall into one of two camps....those that don't want summer to end and those that are VERY ready to get back into school. Well, me, I am totally in camp number 2. Don't get me wrong, we have had an amazing summer. Both boys have had some wonderful life changing experiences at summer camp. Parker has been to several sports camps and has really improved his skills in both basketball and golf. The bigs (that's Mike and Parker) spent a really fun week in North Carolina on the beach with Mike's grandparents. Spencer started his Bio Med stuff and spent several weeks at his awesome new school, Spectrum of Hope. And finally, the kids and I capped it off with a super fun week in Ft. Worth visiting my parents. (More to come about some crazy times last week---great stories to tell!!)
With the new school year comes a time of refocus and dedication; a time to start new so to speak. The slate is clean for most kids and as parents we can put last year behind us and look forward to this new exciting school year. Well, at our house, this is a bittersweet year for us. The big kid starts 5th grade and for some reason, it is hitting me really hard, I feel so much more emotional about it than when he started kinder. I guess I realize how much he has grown up! It’s really his last year to be a “kid”—his 11th birthday was the 21st and he made a big deal out of finally being a “pre-teen” UGH!! Really?? Already??? For Spencer, well if you've been keeping up with the blog, you know what this year brings for him! Can't wait to get him started at Spectrum. He will start tomorrow at Woodcreek (his old school) and attend there for at least two weeks. Two reasons for this, one Spectrum won't officially start until the 8th and since he is in the Special Education program in KISD, we need to have an ARD meeting to formally dismiss/withdraw him from the program. I STILL have very mixed feelings about all this. But I'm trusting God and letting him lead this journey!
For me, well I came to a BIG realization tonight on my run! I have WAY overcommitted myself in ALL areas of my life! Surprise surprise! I have this really unique quality that I think I can do anything and everything. This started way back when I was a little kid. My mom to this day still jokes that any time a teacher would ask the class for something...cookies baked, costumes sewn, carpool driven, field trip chaperon, I was the first one to raise my hand and say "my mom will do it." My 5th grade teacher Mrs. McKeller called my mom one day and said to her...."Mrs. Arledge, you do know that Tami has volunteered you to help with the school play, donate costume supplies, and a bunch of other stuff, is that okay with you?" My mom of course was probably not okay with this, but she was (and still is) the type of mother that does anything for her kids, so with a servant heart she always pulled through for us. I think maybe that's where I get it. See mom, it's all your fault! (Ha ha!!)
So back to my situation....currently at work I am a little overextended with two really big ambitious projects. I know I can get them done and both of them are really a lot of fun to work on!! I am so excited about both of them and look forward to seeing how they turn out and the impact they will have on our Managers!!
In my mom life, this BioMed stuff and managing this school transition is a lot of work. Keeping track of all the supplements and then all the logistics of withdrawing him from Woodcreek and getting him started at Spectrum. Besides all that, I still worry over it quite a bit, and it weighs heavily in my thoughts daily. But we are seeing great things, so it's totally worth it. I can't wait until this time next year; we get to look back on it all and see how far Spencer has come. With all this stuff also comes a constant insurance squabble. It's not a huge deal, but I am either on the phone or on the website daily checking on the status of our claims (for both Thoughtful House and Spectrum).
This year Mike and I also took on the role of class Director for our Bible Study class. Okay, so let me clarify this (since I know Mike is reading!!) Basically, the Married Life Pastor at our church asked Mike if he would like to be the class Director. Mike (having a little more sound judgment than me) told Brad he really didn't think we could devote the time and effort needed to make the class successful. Of course, when Mike told me about it, I said, "Come on babe, we can and should do this" and then I launched into this grandiose scheme of how we could turn our class around. The class had a rough year last year and was in need of a little overhaul. I can be very convincing, and Mike reluctantly agreed, but made it very clear to me that he would need all my help and that we would be doing this together! I was totally on board!! So, here we are the On Demand class directors. Being that I love to have a good time, I decided that I also wanted to be the Social Chairperson! So, we are pulling double duty. But, let me tell you....so far I am really enjoying these two roles! I get to see so many people getting excited about our class again. We have a really awesome core group of people and I can't wait to see what this year brings for each of us in our friendships with each other and our walks with Christ. We are gonna blow those other “30 something” classes outta the water this year. They gonna be wondering "what are those On Demand folks up to??"
So, this evening I headed out on my run. Running is a great way to have a little DQT (that's Daily Quite Time). I run about 6 miles and it takes about an hour (yes, I am a VERY slow runner). So, this is a great time to think! This evening I start going through my to-do list in my head and do a little strategy planning for each of my commitments. I can come up with some really crazy (and sometimes good) ideas on my runs. Tonight, though, all of a sudden, like being smacked by a Mack truck it hit me....Holy Crap!! I totally forgot, I volunteered to be the Campus Junior Achievement Liaison this year! Oh boy, yet another thing to add!! I do LOVE Jr. Achievement, so like all my other commitments, I'm pretty excited about this one too!!
I find it really ironic that for some reason THIS year, when we have so much going on professionally and personally, we have taken on so much more than we EVER have!! But you know what, I'm really not all that stressed out about it. It's really crazy how timing works in our favor and how just the right things come along just when you need it. A few months ago (right in the midst of all these new commitments), our new friend Mike wrote an article called Nothing's Too Small. In it, he examines how there isn't anything we do, if done for the right purpose, that will go unnoticed in the eyes of God. (Oh yeah, and he talks about our little Spencer, so it's a doubly good article!!) Here lately, seems like every time I feel a little overwhelmed, I re-think what my purpose here on earth should be. This is really the first time, I've every really thought about my commitments and why I choose them so willingly. So, tonight on my run, I came up with "My Compass" and moving forward, like an adventurer uses his compass to chart his path, I will use “My Compass” to gauge my commitments.
My Compass
First, does it show God that I love him, that he is special in my life, that he is my king and that I am a faithful follower?
Second, does is show my kids that I love them, that they are special, that God loves them and that I am an example to them of what it means to be a follower of Christ?
Third, does it show my husband that I love him, that he is special, that God loves him and that I am an example of what a God loving wife should be?
Fourth, does it show others around me that I am a Christian, that I love Jesus Christ and that I am a faithful follower?
I can pretty much answer YES to all four of those questions in all my commitments, so while I may feel overcommitted right now, I know that everything I am doing is being done for the right purpose and therefore will be used by God to advance His Kingdom! And that, my friends, is pretty darn exciting to me!!
Until next time….grace, peace, hope, love and prayers!!
T
Therefore, my dear brothers, stand firm. Let nothing move you. Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain.
NIV 1 Corinthians 15:58
I really like this translation…so gotta add it too…
With all this going for us, my dear, dear friends, stand your ground. And don’t hold back. Throw yourselves into the work of the Master, confident that nothing you do for him is a waste of time or effort.
The Message 1 Corinthians 15:58
Monday, August 17, 2009
A Change of Focus
WOW! This blogging journey has turned out to be so much more than I could have every imagined! This all really started out to be just a chronology of our Bio Med Journey, but it has turned into so much more than that. We have had family and friends from all over the country emailing and encouraging us! It is by far the best part about this and makes this so much more fun!! I love it, it makes the late night stints on the computer after the hub and kids are in bed so worth it. Not only is it encouraging to hear what you all have to say, but for me, it is a blast!! I have found it to be quite fun cataloging our lives and what all is going on. It has made me stop and think about "life happenings" a little differenlty. Through this all and a little sense of humor, I have come to realize that really, nothings worth stressing over, and in the end, it’s all really quite funny (and part of a bigger master plan). Oh my life would be so boring otherwise!!! =)
It’s also been really cool when our distant friends and family tell us how much they appreciate hearing about our family and all the craziness. So, with that, I have decided to change things up a little bit, shake it all up and expand our topics. Let me tell you, between Mike, Parker, Cosmo the dog and a cast of many many more characters I have all sorts of fun stuff to write about and I am soo excited to get it going!
FAIR WARNING: family and friends don’t be too shocked if you find a little dirty laundry aired out here on the World Wide Web. Ahhh, just kidding, I would never put you out like that, well, maybe if you deserve it! Again, only joking, you all are so much a part of this story, I really can’t write about it any longer without you in it!!
Okay, so there you have it, a change of focus to our little corner of the web. Only kicker right now is, I would really like to change the title from Bio Med Madness to something else that describes our family; I just can’t think of anything clever!
So…here’s a little challenge to all our readers….leave a comment or email with your suggestions for a new title. Ryan, I really can’t wait to hear what you can come up with!! Ha ha!! (Ryan is my BIL—married to my little sister, they live down the street from us, so you will be hearing lots about them!!—Sorry C&R, that’s what happens when you live close!!)
Anyway, the kids and I are in Ft. Worth visiting my parents this week and I already have a huge note on my Blackberry memo pad of funny/interesting things that have already happened so look forward to hearing more. But for now, here’s a little tidbit: Parker's first TD, Spencer's first B12, The Imposters, Parker asking me to pretend to be his 21 yr old sister "Theresa", Thomas (C&R’s oldest and my favorite nephew) asking “What happened to Spencer’s talker?”, Parker learning to play the guitar, and Little Lou getting stuck on the water slide. All this and we’ve only been here 2 days! What, oh what, more can happen! I dunno, but I can't wait!!
Until next time…grace, peace, hope, love and prayers!
T
BTW--I promised Parker I wouldn't "Twitter" I never promised I wouldn't Blog! Ha, gotta love the loop-holes!!
It’s also been really cool when our distant friends and family tell us how much they appreciate hearing about our family and all the craziness. So, with that, I have decided to change things up a little bit, shake it all up and expand our topics. Let me tell you, between Mike, Parker, Cosmo the dog and a cast of many many more characters I have all sorts of fun stuff to write about and I am soo excited to get it going!
FAIR WARNING: family and friends don’t be too shocked if you find a little dirty laundry aired out here on the World Wide Web. Ahhh, just kidding, I would never put you out like that, well, maybe if you deserve it! Again, only joking, you all are so much a part of this story, I really can’t write about it any longer without you in it!!
Okay, so there you have it, a change of focus to our little corner of the web. Only kicker right now is, I would really like to change the title from Bio Med Madness to something else that describes our family; I just can’t think of anything clever!
So…here’s a little challenge to all our readers….leave a comment or email with your suggestions for a new title. Ryan, I really can’t wait to hear what you can come up with!! Ha ha!! (Ryan is my BIL—married to my little sister, they live down the street from us, so you will be hearing lots about them!!—Sorry C&R, that’s what happens when you live close!!)
Anyway, the kids and I are in Ft. Worth visiting my parents this week and I already have a huge note on my Blackberry memo pad of funny/interesting things that have already happened so look forward to hearing more. But for now, here’s a little tidbit: Parker's first TD, Spencer's first B12, The Imposters, Parker asking me to pretend to be his 21 yr old sister "Theresa", Thomas (C&R’s oldest and my favorite nephew) asking “What happened to Spencer’s talker?”, Parker learning to play the guitar, and Little Lou getting stuck on the water slide. All this and we’ve only been here 2 days! What, oh what, more can happen! I dunno, but I can't wait!!
Until next time…grace, peace, hope, love and prayers!
T
BTW--I promised Parker I wouldn't "Twitter" I never promised I wouldn't Blog! Ha, gotta love the loop-holes!!
Monday, August 10, 2009
The Reflection Pool & a Big Decision!
Friday evening the boys and I headed up to the pool for a little evening swim. Like I've said before, I generally sit on the side of the pool and read a book or browse some trash mag, sort of my chill time. But Friday, I was drawn into watching my kids, you know REALLY watching them and the miracles that they are. I am so amazed at both of them and what all they can and have accomplished. As I sat there a while, I started thinking about all the wonderful things Spencer has been able to accomplish over the last week and felt compelled to give a little update. I like to call it Cool Happenings by the Pool, here goes....
1. The GOG!
As we were walking into the pool, Spencer started talking (unprompted) about everything he was seeing. This is so incredible, because when Spencer does talk, we usually have to prompt him with "what is that?", or "what color is that?" and he will generally respond without looking up or pointing at what we are asking. But today, as we walked in he IMMEDIATELY saw the frog slide, looked up at me, pointed and said..."gog", next he pointed to the little buckets and said and signed "ello" "een" "boo" and "ed" (that would be yellow, green, blue and red). This is so cool, not because he is talking, he has been using these words for a long time now, but he is attempting to engage in a conversation by giving eye contact, pointing at and labeling what he sees without even being asked. VERY COOL!!
2. The Deep End
Generally Spencer likes to hang out in the splash pool; they have all these really neat water sprayer things, a slide and other cool things he LOVES. Well, he was hanging out doing his own thing, but I noticed that every so often, he would stop and look over at the diving boards and watch Parker do his tricks. I think after an hour or so, he had had enough with that baby stuff!! All of a sudden he got out and sort of walk, run, hopped, over to the diving boards with me doing the mommy speed walk to try and catch up to him (not a pretty sight in a bathing suit--a little too much jiggle-ha ha!). Now, Spencer can't really swim and we keep a life jacket on him when he is in the "big pool". He has learned to get around pretty good in his jacket and we have even taken it off of him a few times to let him jump off the diving boards. But, I have always been there to help him to the side. I didn't quite get there in time and he was already on the board and ready to jump in. So, instead of breaking out into a full on sprint (again, not a pretty sight), I decided, what the heck, let's see what he can do!! Well wouldn't ya know it, he jumped in and swam to the side all by himself!! Way to go buddy!!
3. Brotherly Love
I was also amazed at watching him "play" with his brother this week. Now, I use that term very loosely. Spencer doesn’t really know how to play with other kids and will generally just ignore anyone around him. I caught him not once but twice engaging with Parker.
First was when he and Parker were going down the slide at the pool. Parker being 10 thinks its fun to try and bend the rules, you know see how much he can get away with. This time, he was going down the slide backwards. I knew he was going to get called out by the lifeguards, but before I could say anything to him, Spencer was right behind him doing the SAME thing. It was so neat to see Spencer doing everything his big brother did, even if it would eventually get them in trouble.
The second time, it was a very rushed and hectic morning as we were heading out for school on Thursday. The boys were sitting in the chairs by the back door and were SUPPOSED to be putting on their shoes, while I frantically gathered all our crap to load up the car. Instead Parker, like any 10 year old, started mocking and making funny faces at me. Well wouldn't ya know Spencer thought it was so funny he started to laugh and make some of the same faces! That stopped me dead in my tracks and before you know it we were all in full on laughter. Needless to say we were late to school and work, but it was SO worth it!! The best part of this was seeing a little glimpse of a sense of humor in Spence. Albeit at my expense, but I'll be the butt of any joke if I get to see something so priceless!! A smile, a laugh and two brothers enjoying each other!! What more could I ask for!!
4. Are You Ready for Some Football?!?!
Spencer LOVES sports. He loves all kinds of sports. What ever sport Parker is currently playing, Spencer will really get into (football, basketball, baseball, golf, whatever).
During baseball, he will get behind the back stop and squat down like the catcher, act like he is at bat and swing when the ball is pitched and will pretend to run the bases.
During basketball season, he develops an uncanny ability to find the exact spot he needs to stand on to make a basket, and can make about 90% of his shots.
But, our favorite of all sports has to be football. Football brings so many great feelings, don't ya think? And right now we are ready for some football!! Parker had his first official practice this week and as we drove up to the field, Spencer said, unprompted, "boo-ball" and kept saying it over and over again. One of Spencer's favorite things to do at practice is get in a 3-point stance and you have to get down across from him and say "down, set, hut" and he will run toward you and tackle you! It is SO fun, because he will start laughing and have this HUGE smile on his face! It also comes in very handy when you want him to move a little faster...all you have to say is "down, set, hut" and he will start running. If you are ever at the Cinco Ranch Target you will know us when you see us. We are the crazy family in the parking lot, going "down, set, hut" run, run run, "down, set, hut" run, run, run "down, set, hut" all the way into the store. Now, this only works during football season, the other 9 months of the year, doesn't work.
Evening Smoothie
1/2 tsp Vita Spectrum
1 tsp. Fish oil
1 capsule Zinc
1 capsule Magnesium citrate
1 5MTHF capsule
6. No More Pull Ups
I can officially say Spencer is about 90% potty trained. He has been able to stay accident free from the time he gets up in the morning until we get home from school. Now, that's pretty darn cool!! What about the other 10% of the time, weeeeelllll, we get really lazy when we are at home! Here's why....now when I say he stays accident free, I mean, IF we take him every 45 min or so, he will go every time and will stay dry (that's what they do at school, and I'm pretty good at doing in the morning). He is NOT yet trained to go on his own, but they are working on that at school. This is all fine and good and all, IF you remember to take him. Evenings are when we hit the wall....we are so exhausted and he really just wants to chill out. Okay, okay, I really have no excuse! So, alas, we will get better at this, I know he can do it, and honestly, I know we can too!! I also know that it will get easier at night when he begins to start initiating to go potty. We are on our way, again WAY TO GO LOU!!
7. The Big Decision
And last but not least, we have decided, made the leap of faith, are heading into unchartered waters and are going to send him to Spectrum of Hope full time in the fall. I am so very excited about our decision!! I keep thinking of all the really cool things the school can do for us, things that would not even be considered in the public school system.
Take for example all the supplements he is on. First off the school will not administer "supplements". Very soon, Spencer will need to have supplements during lunch time. There are currently several families in KISD that are struggling with the school nurses on giving supplements. It is really ridiculous and so full of political red tape! It is sickening that they can't give these kids what they need to function throughtout the day. Oh, but if it were a DRUG they would be all okay with that! Sorry, bout that soap box, it's just makes no sense at all!!
Second, we currently have to put Spencer’s sups in his smoothie. This is not ideal, because he is probably not getting the entire dose. There's concern that you lose a little bit of what is left in the capsule and any that might be stuck to the sides of the cup. It would be so much easier if he could just swallow them. I also think we will at some point have to give him something outside of a meal, on an empty stomach and you can't very well put it in a smoothie. So guess what, I am going to have SoH work on teaching him to swallow a pill!! And guess what, they will!!
I have to admit though; I had a little bit of a panic attack today when I had to notify KISD about withdrawing him from public school. It just feels so final, like there's no turning back (now I know that if it doesn't work out that they do have to take him back, but still it's a little scary). Today, when I picked him up and spoke to his afternoon therapist, I was once again affirmed that this is the right thing. Good things to come!
We have a pretty exciting week in store, tomorrow he is being evaluated for an ACD-that's an Assistive Communication Device. It's like a computer that he can touch a series of icons to form a sentence and it will give a verbal output of what he selected. There's a really cool program in Texas where if you have difficulty speaking you can get one for free. It's some how connected to the 911 service, so that everyone can have access to communicating in the even of an emergency, or something like that. I get it all confused, but hey, it's free, he needs it, and SoH will teach him how to use it!!
His brother is away at camp so he gets a ton of mom and dad time this week. We will be playing loads of "Wa-Luigi"--that's Mario Party 8 for the Wii--pretty cute whenever you say "Wa-Luigi" Spencer will imitate the sound he makes and say "eeeeeeeee" and give you a funny face! It's quite hilarious!!
His buddy from Barnabas is coming over to spend some time with him on Thursday. I don't really know for sure, but I think he's pretty excited about it. We have been asking him if we wants Mike to come over and he says "essss" and gets a big smile on his face!! So, yea, I think he's excited! I know they'll have a great time and we will too!! My honey and I are going on a date! Pappas peeps close your eyes; don't read any further....we are going to Perry's for a nice steak dinner! YUM!
Saturday night, the kids and I are heading up to Ft. Worth to visit my folks for a few days. We have lots of fun stuff planned...Hawaiian Falls, Six Flags, maybe a little golf. I'm sure there will be lots of fun stuff to blog about when we return!
Until next time....grace, peace, hope, love and prayers!
T
Be joyful in hope, patient in affliction, faithful in prayer.
Romans 12:12
1. The GOG!
As we were walking into the pool, Spencer started talking (unprompted) about everything he was seeing. This is so incredible, because when Spencer does talk, we usually have to prompt him with "what is that?", or "what color is that?" and he will generally respond without looking up or pointing at what we are asking. But today, as we walked in he IMMEDIATELY saw the frog slide, looked up at me, pointed and said..."gog", next he pointed to the little buckets and said and signed "ello" "een" "boo" and "ed" (that would be yellow, green, blue and red). This is so cool, not because he is talking, he has been using these words for a long time now, but he is attempting to engage in a conversation by giving eye contact, pointing at and labeling what he sees without even being asked. VERY COOL!!
2. The Deep End
Generally Spencer likes to hang out in the splash pool; they have all these really neat water sprayer things, a slide and other cool things he LOVES. Well, he was hanging out doing his own thing, but I noticed that every so often, he would stop and look over at the diving boards and watch Parker do his tricks. I think after an hour or so, he had had enough with that baby stuff!! All of a sudden he got out and sort of walk, run, hopped, over to the diving boards with me doing the mommy speed walk to try and catch up to him (not a pretty sight in a bathing suit--a little too much jiggle-ha ha!). Now, Spencer can't really swim and we keep a life jacket on him when he is in the "big pool". He has learned to get around pretty good in his jacket and we have even taken it off of him a few times to let him jump off the diving boards. But, I have always been there to help him to the side. I didn't quite get there in time and he was already on the board and ready to jump in. So, instead of breaking out into a full on sprint (again, not a pretty sight), I decided, what the heck, let's see what he can do!! Well wouldn't ya know it, he jumped in and swam to the side all by himself!! Way to go buddy!!
3. Brotherly Love
I was also amazed at watching him "play" with his brother this week. Now, I use that term very loosely. Spencer doesn’t really know how to play with other kids and will generally just ignore anyone around him. I caught him not once but twice engaging with Parker.
First was when he and Parker were going down the slide at the pool. Parker being 10 thinks its fun to try and bend the rules, you know see how much he can get away with. This time, he was going down the slide backwards. I knew he was going to get called out by the lifeguards, but before I could say anything to him, Spencer was right behind him doing the SAME thing. It was so neat to see Spencer doing everything his big brother did, even if it would eventually get them in trouble.
The second time, it was a very rushed and hectic morning as we were heading out for school on Thursday. The boys were sitting in the chairs by the back door and were SUPPOSED to be putting on their shoes, while I frantically gathered all our crap to load up the car. Instead Parker, like any 10 year old, started mocking and making funny faces at me. Well wouldn't ya know Spencer thought it was so funny he started to laugh and make some of the same faces! That stopped me dead in my tracks and before you know it we were all in full on laughter. Needless to say we were late to school and work, but it was SO worth it!! The best part of this was seeing a little glimpse of a sense of humor in Spence. Albeit at my expense, but I'll be the butt of any joke if I get to see something so priceless!! A smile, a laugh and two brothers enjoying each other!! What more could I ask for!!
4. Are You Ready for Some Football?!?!
Spencer LOVES sports. He loves all kinds of sports. What ever sport Parker is currently playing, Spencer will really get into (football, basketball, baseball, golf, whatever).
During baseball, he will get behind the back stop and squat down like the catcher, act like he is at bat and swing when the ball is pitched and will pretend to run the bases.
During basketball season, he develops an uncanny ability to find the exact spot he needs to stand on to make a basket, and can make about 90% of his shots.
But, our favorite of all sports has to be football. Football brings so many great feelings, don't ya think? And right now we are ready for some football!! Parker had his first official practice this week and as we drove up to the field, Spencer said, unprompted, "boo-ball" and kept saying it over and over again. One of Spencer's favorite things to do at practice is get in a 3-point stance and you have to get down across from him and say "down, set, hut" and he will run toward you and tackle you! It is SO fun, because he will start laughing and have this HUGE smile on his face! It also comes in very handy when you want him to move a little faster...all you have to say is "down, set, hut" and he will start running. If you are ever at the Cinco Ranch Target you will know us when you see us. We are the crazy family in the parking lot, going "down, set, hut" run, run run, "down, set, hut" run, run, run "down, set, hut" all the way into the store. Now, this only works during football season, the other 9 months of the year, doesn't work.
5. Supplements Galore
Today marks our first day on full supplementation! Woo hoo!! We are expecting great things to start happening. Okay, okay, I gotta admit, we haven't actually started the B-12 injections. We plan to this week; I'm a little freaked out about it, so maybe I'm procrastinating just a little bit, maybe! What does full supplementation mean, here ya go: (This is kinda fun, in a weird sort of way, I feel like a mad scientist!-mua-a-aaa (evil laugh)!)
Morning Smoothie
1/2 tsp calcium powder
1 scoop buffered C powder
1/2 tsp Vita Spectrum
1 probiotic capsule
1 P5P capsule
Evening Smoothie
1/2 tsp Vita Spectrum
1 tsp. Fish oil
1 capsule Zinc
1 capsule Magnesium citrate
1 5MTHF capsule
6. No More Pull Ups
I can officially say Spencer is about 90% potty trained. He has been able to stay accident free from the time he gets up in the morning until we get home from school. Now, that's pretty darn cool!! What about the other 10% of the time, weeeeelllll, we get really lazy when we are at home! Here's why....now when I say he stays accident free, I mean, IF we take him every 45 min or so, he will go every time and will stay dry (that's what they do at school, and I'm pretty good at doing in the morning). He is NOT yet trained to go on his own, but they are working on that at school. This is all fine and good and all, IF you remember to take him. Evenings are when we hit the wall....we are so exhausted and he really just wants to chill out. Okay, okay, I really have no excuse! So, alas, we will get better at this, I know he can do it, and honestly, I know we can too!! I also know that it will get easier at night when he begins to start initiating to go potty. We are on our way, again WAY TO GO LOU!!
7. The Big Decision
And last but not least, we have decided, made the leap of faith, are heading into unchartered waters and are going to send him to Spectrum of Hope full time in the fall. I am so very excited about our decision!! I keep thinking of all the really cool things the school can do for us, things that would not even be considered in the public school system.
Take for example all the supplements he is on. First off the school will not administer "supplements". Very soon, Spencer will need to have supplements during lunch time. There are currently several families in KISD that are struggling with the school nurses on giving supplements. It is really ridiculous and so full of political red tape! It is sickening that they can't give these kids what they need to function throughtout the day. Oh, but if it were a DRUG they would be all okay with that! Sorry, bout that soap box, it's just makes no sense at all!!
Second, we currently have to put Spencer’s sups in his smoothie. This is not ideal, because he is probably not getting the entire dose. There's concern that you lose a little bit of what is left in the capsule and any that might be stuck to the sides of the cup. It would be so much easier if he could just swallow them. I also think we will at some point have to give him something outside of a meal, on an empty stomach and you can't very well put it in a smoothie. So guess what, I am going to have SoH work on teaching him to swallow a pill!! And guess what, they will!!
I have to admit though; I had a little bit of a panic attack today when I had to notify KISD about withdrawing him from public school. It just feels so final, like there's no turning back (now I know that if it doesn't work out that they do have to take him back, but still it's a little scary). Today, when I picked him up and spoke to his afternoon therapist, I was once again affirmed that this is the right thing. Good things to come!
We have a pretty exciting week in store, tomorrow he is being evaluated for an ACD-that's an Assistive Communication Device. It's like a computer that he can touch a series of icons to form a sentence and it will give a verbal output of what he selected. There's a really cool program in Texas where if you have difficulty speaking you can get one for free. It's some how connected to the 911 service, so that everyone can have access to communicating in the even of an emergency, or something like that. I get it all confused, but hey, it's free, he needs it, and SoH will teach him how to use it!!
His brother is away at camp so he gets a ton of mom and dad time this week. We will be playing loads of "Wa-Luigi"--that's Mario Party 8 for the Wii--pretty cute whenever you say "Wa-Luigi" Spencer will imitate the sound he makes and say "eeeeeeeee" and give you a funny face! It's quite hilarious!!
His buddy from Barnabas is coming over to spend some time with him on Thursday. I don't really know for sure, but I think he's pretty excited about it. We have been asking him if we wants Mike to come over and he says "essss" and gets a big smile on his face!! So, yea, I think he's excited! I know they'll have a great time and we will too!! My honey and I are going on a date! Pappas peeps close your eyes; don't read any further....we are going to Perry's for a nice steak dinner! YUM!
Saturday night, the kids and I are heading up to Ft. Worth to visit my folks for a few days. We have lots of fun stuff planned...Hawaiian Falls, Six Flags, maybe a little golf. I'm sure there will be lots of fun stuff to blog about when we return!
Until next time....grace, peace, hope, love and prayers!
T
Be joyful in hope, patient in affliction, faithful in prayer.
Romans 12:12
Tuesday, August 4, 2009
Decisions Decisions Decisions
Ever have something you pray for as hard as you can, garner all your family and friends to do the same, stick with it steadfastly for YEARS and all of a sudden WHAM....answered!! And then, not only answered, but the answer is so much greater than what you could POSSIBLY have prayed for? Sounds like a good place to be in, right? One would think so! But, guess what? Big fat NOPE, not so! Not a fun place to be in, not today, not yesterday, not all this past weekend!! Got you wondering huh? Well sometimes when a prayer is answered it opens up a whole new series of things to think and pray over! I have lost so much sleep the last 5 days with my mind reeling on the possibility of sending Spencer to Spectrum full time during the school year. Why is it such a hard decision? I have so many fears, worries and questions....(I know, I know, turn it over to God, trust in Him, let all your worries fall on Him. But remember I am a wee bit stubborn and I'm just not quiet ready...I'm getting there, SLOOOOOWLY!) Basically we have 2 choices and we welcome anyone to comment or email me on what your thoughts are....
Choice 1:
Stay in the comfort of routine and of knowing what is in store the coming year. It means keeping a routine that has worked beautifully for the past 3 years. My kids have not had to be in day care despite having two parents with pretty demanding full time jobs. What this means for Spencer....good programming from the top school district in Texas for providing services to children with Autism. KISD has been awesome to us; Spencer has grown in amazing ways over the past few years. I feel confident in the services they offer and the skill level of his teachers. This means familiarity, comfort, predictability! I can put education on the back burner for a while and focus our attention on all that we are doing with diet and BioMed intervention. Which, honestly, is starting to take a toll on me....it’s getting a little overwhelming. (Guess I need to update on that pretty soon.)
Choice 2:
Jump into the scary unknown!! This would mean a whole lot of running around town and quiet a bit of negotiating and working our schedule and routine!! What this means for Spencer....where KISD is good, Spectrum is Great! He has made such amazing progress the last 4 weeks!! What he has been able to accomplish would have taken KISD about 6-8 weeks to get to the same point. Instead of a few one on one sessions each day, it means one on one therapy ALL day. It means if there is something specific I want them to work on, they will. No more school bureaucracy, no more ARD meetings, no more IEP's, no more feet dragging to get ANYTHING done. What I get in return is a constant battle with Insurance and the fear that someday they will stop paying (we have been burned in the past). BUT, I have an advocate to help me through the process. It is Kimberly's mission to have insurance reimburse therapy for EVERY kid at SoH. She told me today that 90% of the kids are funded by insurance (boy have we come a LONG way in advocating for our kids—keep calling your legislators there is still much work to be done) She also said that most of those kids are BCBS clients-which we are also. Advocacy is not something we have in our disputes with the school system. (Well you can always hire an attorney--big $$$) So, basically, we have been on our own to fend for ourselves and as rookies navigate a systems of pros who have done it for years years with many many families. At one of our ARD's we were out numbered 15 to 2. Not good odds when you have to fight for something! It can be a losing battle, but somehow over the years, I have managed to develop a good rapport with them. Something I fear might become strained if we pull him out. We will probably have him back in the public school system at some point.
To each of you reading this, I hope the choice seems obvious to you and you can pass along a little wisdom to me!
There are a few things I do know....
I won't be able to sleep well if I can't honestly say I have tried my hardest and done everything within my means to help him.
I am a little afraid of the future. No matter the choice I make their will be good and there will be not so good. But I do know that it will all turn out okay, I have faith that it will. That doesn't mean I can't have a little fear and worry. ;)
Until next time….peace, love, hope, prayers and a little less fear and worry! ;)
T
Come to me all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your soul. For my yoke is easy and my burden is light.
Matthew 11:28-30
Choice 1:
Stay in the comfort of routine and of knowing what is in store the coming year. It means keeping a routine that has worked beautifully for the past 3 years. My kids have not had to be in day care despite having two parents with pretty demanding full time jobs. What this means for Spencer....good programming from the top school district in Texas for providing services to children with Autism. KISD has been awesome to us; Spencer has grown in amazing ways over the past few years. I feel confident in the services they offer and the skill level of his teachers. This means familiarity, comfort, predictability! I can put education on the back burner for a while and focus our attention on all that we are doing with diet and BioMed intervention. Which, honestly, is starting to take a toll on me....it’s getting a little overwhelming. (Guess I need to update on that pretty soon.)
Choice 2:
Jump into the scary unknown!! This would mean a whole lot of running around town and quiet a bit of negotiating and working our schedule and routine!! What this means for Spencer....where KISD is good, Spectrum is Great! He has made such amazing progress the last 4 weeks!! What he has been able to accomplish would have taken KISD about 6-8 weeks to get to the same point. Instead of a few one on one sessions each day, it means one on one therapy ALL day. It means if there is something specific I want them to work on, they will. No more school bureaucracy, no more ARD meetings, no more IEP's, no more feet dragging to get ANYTHING done. What I get in return is a constant battle with Insurance and the fear that someday they will stop paying (we have been burned in the past). BUT, I have an advocate to help me through the process. It is Kimberly's mission to have insurance reimburse therapy for EVERY kid at SoH. She told me today that 90% of the kids are funded by insurance (boy have we come a LONG way in advocating for our kids—keep calling your legislators there is still much work to be done) She also said that most of those kids are BCBS clients-which we are also. Advocacy is not something we have in our disputes with the school system. (Well you can always hire an attorney--big $$$) So, basically, we have been on our own to fend for ourselves and as rookies navigate a systems of pros who have done it for years years with many many families. At one of our ARD's we were out numbered 15 to 2. Not good odds when you have to fight for something! It can be a losing battle, but somehow over the years, I have managed to develop a good rapport with them. Something I fear might become strained if we pull him out. We will probably have him back in the public school system at some point.
To each of you reading this, I hope the choice seems obvious to you and you can pass along a little wisdom to me!
There are a few things I do know....
I won't be able to sleep well if I can't honestly say I have tried my hardest and done everything within my means to help him.
I am a little afraid of the future. No matter the choice I make their will be good and there will be not so good. But I do know that it will all turn out okay, I have faith that it will. That doesn't mean I can't have a little fear and worry. ;)
Until next time….peace, love, hope, prayers and a little less fear and worry! ;)
T
Come to me all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your soul. For my yoke is easy and my burden is light.
Matthew 11:28-30
Subscribe to:
Posts (Atom)
