25 Things, Autism Style

Over at Julie’s blog she has posted her 25 Things, Autism Style. I thought I would join in too.


1. WHERE DO YOU CURRENTLY LIVE?

We live in southern Maryland (a.k.a. “the sticks” and “THE end of the Earth” where no one in their right mind would live).


2. WHAT IS YOUR CHILD’S NAME, AGE AND DX?

MONK is 17 and will be 18 in about a month. He was diagnosed with Asperger Syndrome in the 3rd grade.


3. WAS YOUR CHILD PROPERLY DIAGNOSED?

We had the school psychologist test MONK and she claimed that he had no problems significant enough to warrant special services. We then had a comprehensive Independent Evaluation done and MONK was diagnosed with Asperger Syndrome. We met again with the school and had our psychologist present the test results. The same school psychologist then retested MONK and found there were indications of significant processing deficits, which seem to be related to an autism spectrum disorder. MONK met the criteria for an educational disability of autism. DUH!


4. WHAT DID YOU THINK WHEN YOU FIRST LEARNED YOUR CHILD HAD AUTISM?

Finally, we know what he has and we can get the help he needs.


5. WHAT IS THE HARDEST THING ABOUT HAVING A CHILD WITH ASD?

Having a special needs child evokes a lot of responsibility. Sometimes the daily struggles we face are overwhelming; something that other parents never have to contemplate.

As a parent of a special needs child, like everyone else, I have learned to cope. On any particular day I have to be tolerant more than usual when something crops up that is overwhelming and frustrating to the point of making me cry. It’s a never ending battle that continues until the day I die which is frightening because I do not know if my child will be able to face the day to day struggles that I have endured all this time. My child’s future looks bleak and uncertain, something that my parents never had to deal with. They can go to sleep every night knowing that their child is fine, well educated, and can take care of herself no matter what. I on the other hand do not have that privilege and sometimes I get jealous of those who are more fortunate. As the saying goes, “Life is not fair”, but sometimes I would like something good to happen that would help make those bad times seem like a distant memory.

Every day it’s something and every day we have to “fix it” no matter what because no one else will. While others are totally oblivious to what a parent of special needs child goes through from day to day, we try to do all we can just to stay sane. It’s not easy, but we persevere because we have to.


6. WHAT IS THE BEST THING?

I have learned that we ALL are not perfect and that God loves each and every one of us, even crabby me.


7. HAVE YOU TRIED THE DIET AND DID IT WORK?

Not with MONK. If the autism characteristics diminish for those who use any diets, good for them, but I don’t think their child had autism to begin with if this happened. Their child’s reaction to certain foods caused autism like behaviors. (Just my two cents.)


8. WHAT ABOUT OTHER BIOMED TREATMENTS- HBOT, CHELATION, ETC.?

Nope.


9. WHAT METHOD OF ABA/Behaviour Therapy DO YOU LIKE BEST?

For MONK we like Positive Behavior Supports, Visual Schedules, and mom taking some kind of sedative.



10. IF YOU COULD MAKE EVERY PARENT TRY ONE THING- WHAT WOULD IT BE?

Visual Schedules. Children with ASD need predictability and therefore do not like change. Having a chart or visual schedule displayed of what they are going to do and activities in advance can provide security and keep inappropriate behavior down to a minimum. This technique can also be used to prepare for any change in the normal routine. Letting children that have ASD know of any schedule changes prior to the activity can prevent anxiety and reduce the likelihood of tantrums, rage, and meltdowns.

Picture and/or written schedules can also teach children new things and to keep them on task (they can check their schedule to see what they are supposed to do next). It is also a great tool to help with transitioning from one activity to another.


11. WHAT DO YOU THINK THE RATE OF AUTISM REALLY IS?

I really don’t know. Last time I heard it was 1 out of every 150.


12. HOW MANY KIDS WITH AUTISM LIVE ON YOUR BLOCK?

We did have another kid that I thought (and others) had AS, but the father refused to have him tested for it.


13. HAVE YOU EVER MET A RECOVERED CHILD?

No. I don’t believe that you ever recover from autism. I have seen many kids after proper education and help get better, but they are never fully cured of autism. That is a lifelong struggle that they must face.


14. WHAT KIND OF EDUCATIONAL PROGRAM DOES YOUR CHILD GET?

MONK attends our local high school and goes to regular classes. He does the regular curriculum that all the kids do and has been on the Honor Roll since 6th grade. He receives Speech for 30 minutes once a week and OT on consult basis.


15. DO YOU GET SERVICES/TREATMENTS THROUGH YOUR HEALTH INSURANCE?

We have done therapists, tutors, psychiatrists, and psychologists (insurance only paid for some of it so the rest came out of pocket). Presently MONK only receives Speech services once a week for 30 minutes and OT on consult at school.


16. DO YOU THINK THE DIVORCE RATE IS REALLY 80% FOR ASD FAMILIES?

It’s like that also for a death of a child. Most marriages cannot handle or cope with having a special needs child, especially ASD.


17. DO YOU HAVE A GOOD POOP STORY?

Goodness, that was so looooooooong ago.


18. WHAT IS THE STUPIDEST THING ANYONE HAS EVER SAID ABOUT YOUR KID?

My son's regular education teacher said to me at one meeting, "I would take him to Johns Hopkins and get him fixed!"


19. WHAT DO YOU SAY WHEN SOMEONE ASKS “WHAT IS AUTISM?”

When someone asks me what MONK has I say: Asperger Syndrome is a form of high functioning autism. The best way to describe him is he is like that character MONK on TV.


20. WHO IS YOUR “AUTISM COMMUNITY HERO”?

I do not have one.


21. WHAT GROUP/ORGANIZATION DO YOU THINK HAS DONE THE MOST FOR THE COMMUNITY?

Around here where I live, none.


22. DID YOU VACCINATE YOUR CHILD AND DO YOU CONTINUE TO DO SO?

Yes, I did. He’s 17 so I think we are done.


23. DOES YOUR FAMILY ACCEPT YOUR CHILD HAVING AUTISM?

Well, MONK is 17 so the family has had a looooooong time to accept it and get to know him. They are pretty good about treating him like everyone else and understand somewhat about autism.


24. WHAT LESSON HAVE YOU LEARNED AFTER ALL OF THIS?

I will be doing this until the day I die. It will never be over. So what’s a parent of a special needs child do? Recognizing there is no way to anticipate the unexpected, I therefore just take one day at a time and hopefully today will be a better day than yesterday. Well, it couldn’t get worse, could it?


25. IF YOU COULD GO BACK IN TIME, WOULD YOU CHOSE FOR YOUR CHILD TO BE NEURO-TYPICAL?

Yes, wouldn’t you want your child to go through life without all this crap that they have to deal with day in and day out?