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

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