Things about Autism I wish the general public understood

Hello My Friends!!


So, I had an experience today that really brought out the worst in me!! But more importantly it reminded me of something I started about a year ago and have been adding to ever since. It was sort of a "Pre-Blogging" journal if you will to help me express some things that really frustrate and/or have encouraged me as a parent of a special needs child.

You're probably wondering what happened today, (if not, just skip down to the end to read the list)....we had been at church all morning, had lunch and Mike wanted to workout, so I said, "Let's go to the Y and I'll swim with Spencer while you work out." FYI--the pool is one of Spencer's GREATEST joys in life.

The Y pool has this really cool water jungle gym, for a lack of a better word. You've probably seen what I'm talking about, they have all these wheels you can turn that make the water spray in different ways. Well, there is this one "wheel" in particular that Spencer LOVES to play with. So, he's there minding his own business, turning the water on, turning it off, turning it on, turning it off. I really enjoy this time, because it allows me to relax for a few minutes and read, one of my greatest joys. (Right now, I'm reading First Things First, the book by Kurt and Brenda Warner...LOVE it and highly recommend.)

Anyway, Spencer's having a blast; I'm soaking up some sun and enjoying my read. I look up from my book to check on Spencer and this mean lady was right in his face, shaking her finger at him!! I jumped out of my chair and flew over there and wasn't very nice....but said to the lady (which I always get a kick out of saying this, cause it sort of puts them in their place) ”He doesn't understand what you are saying to him, he can't talk, he has Autism." She was stunned, (I think she probably had a paradigm shift) and I was pissed! I mean I was HOT, I don't normally let these encounters get the best of me (they happen often enough), but today it just hit me wrong. You can mess with me all you want, but don't you dare mess with my kids, especially my child that can't speak up for himself!! This got me thinking about my "list", a list I started because I realized there were some things that I wish the general public knew about Autism. As you read it, my hope is that #1 you enjoy reading it and #2 you read it with a touch of humor....because if we take this journey too seriously, we wouldn't see the joy we have been blessed with in Spencer!!

Since 2003 we have been down a road I never imagined. Our youngest son, Spencer, has Autism, Global Apraxia, and severe Speech Delay (essentially non-verbal). As we have been traveling this road I have found there are just some things I wish everyone would understand about Autism and/or the families and children that are affected. This is our story.....

1. Riding the "short bus" ain't a bad gig....it picks you up at your door and it has air conditioning. Don't knock it til you try it!! Think about the 100+ temps in Texas in September!!

2. Be careful when you use the word retard, retarded, etc.....we all act like a bunch of idiots and we don't have an excuse. Spencer does and you know what, he really doesn't care what other people think of him.

3. In my opinion, Autism is WAY over diagnosed. That's my opinion.

4. If you know someone with a child with autism, OFFER TO BABYSIT!! This is the hardest part, finding time to spend with my spouse.

5. If you are in a store and you see a child meltdown, don't STARE or make judgments on their parenting----OFFER TO HELP!! It may be a distraught mother/father trying to deal with their over stimulated ASD child who needs your help.

6. Vaccines and Autism...I think there's something there. New Parents, do your homework and don't just take the opinion of your Ped....But on the contrary, do not NOT vaccinate just because you are scared that your precious baby will get Autism. There are alternate ways to vaccinate safely!!

7. Therapy costs $40K+ per year and isn't covered by most insurance companies. If you have a few bucks to spare, donate it to one of the many schools for children with Autism, you may just make a huge difference in the life of a child who can't afford therapy on his own. (Spectrum of Hope is our place!)

8. KISD is the BEST School district if you have a child with autism!! Audrey Bivens is an angel sent from heaven and has done so much for our district and services for children with Autism! You are the BOMB!!

9. When you receive the DX, you walk out of the office with a pat on the back and a good luck. Most Dr.'s offer you very little hope or information on what to do. Parents are left fending for themselves to treat their children.

10. If you are blessed enough to have a child with Autism you will "grow up" to be a better person.

11. I think Spencer (and children with Autism) is closer to God than anyone I know.

12. I wish I could have Autism for a day.....for many reasons....

13. You realize how important it is for parents to teach their children about special needs, disabilities and treating everyone with courtesy and respect.

14. You realize there are parents/adults out there that need to learn a little courtesy and respect.

15. Our wonderful new president just signed a bill to provide medical coverage to illegal children. Hmmm.....maybe if I were an illegal immigrant or better yet, quit my job and live on welfare I can be on Medicaid and my son's therapy will be paid for by the government. Oh yeah, I want to be a productive member of society and because of that I can't afford therapy for him because it's not covered by our ERISA health plan.

16. Don't know what an ERISA plan is???? Well, if you live in Texas your insurance provider is required (by state law) to pay for therapies for children with Autism. IF you have an ERISA health plan, they don't have to follow state laws.

17. MOST insurance plans are ERISA plans.

18. Giving exemptions to ERISA plans is a load of crap!! Why the heck do they get a free pass to not follow a law that has been passed in a state in which they are insuring folks? CRAP!!!

19. Camp Barnabas has got to be the greatest place on earth!! (Again, if you have a few bucks to spare, this is another great place!!) It's an OVERNIGHT (can I get a woo hoo!!) camp for children/young adults with special needs. Spencer went this summer and we have been forever blessed to have met Chuck, Jodi, Erik, and Mike!!

20. Suzette Steward has got to be one of the most energetic, passionate, and dedicated teachers in KISD. She not only devotes her time to our kids during the school year, she has also started Camp Journey, she has week long Day Camps, overnight weekend camps, and Swim Clubs for ESY kids. She is 100% dedicated to our kids!! Suzette, you ROCK!!

To be continued....anyone who is living with Autism and wants to offer your input....leave a comment...I would love everyone's perspective. This includes you....Aunts, Uncles, Grandparents, Friends, Teachers, Counselors, Babysitters, and Fellow Mommy Warriors.

Until next time....peace, love, hope and prayers!

T

With regard to the lady in my story, I pray that she seeks wisdom first, before she speaks, and for myself, I pray the same prayer. My reaction was no better than hers.

Brothers, do not slander one another. Anyone who speaks against his brother or judges him speaks against the law and judges it. When you judge the law, you are not keeping it, but sitting in judgment on it. James 4:11