Saturday, February 14, 2009

25 Things, Autism Style


I've seen this on a few other blogs, thought I'd play along too :).

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1. WHERE DO YOU CURRENTLY LIVE?
The Twilight Zone, USA :)

2. WHAT IS YOUR CHILD’S NAME, AGE AND DX?
Cuddlebug, age 7, dx'd with autism & sensory processing disorder at age 3
Bearhug, age 7, dx'd with autism & sensory processing disorder at age 3
Little Bitty, age 3 (4 next month!), dx'd with PDD-NOS & sensory processing disorder at age 2

3. WAS YOUR CHILD PROPERLY DIAGNOSED?
I believe so, yes, but as long as our boys are getting the support that they need we don't worry too much about the diagnosis specifics. Cuddlebug & Bearhug are both on the "high-functioning" end of the spectrum. Little Bitty was dx'd shortly after turning 2, and with him being so young the psychologist preferred to dx PDD-NOS. I think if we were to re-evaluate, Little Bitty's diagnosis at this point would probably be something along the lines of "moderate" autism.

4. WHAT DID YOU THINK WHEN YOU FIRST LEARNED YOUR CHILD HAD AUTISM?
With Bearhug and Cuddlebug, my first reaction was relief. Finally we had an explanation for the constant meltdowns and the difficulty with communication. There had been something a little "different" (for lack of a better word) about our twins from birth (they never regressed) and having the dx helped to explain a lot. At the same time, I worried about what their future would hold. I knew almost nothing about autism so I embarked on a crash course to learn as much as I could. At least I finally knew where to start.

With Little Bitty, I felt a deep sadness when I realized his regression was real and not me being paranoid. At the same time, the fact that we'd been at least partway down this road already gave me mixed emotions. Hope because we had experienced significant progress with his brothers, and dread because there were a lot of rough times and stress along the way to that progress, and I knew the road ahead was not going to be easy. Just thinking about it made me exhausted!

5. WHAT IS THE HARDEST THING ABOUT HAVING A CHILD WITH ASD?
One of the hardest things is dealing with judgmental attitudes. I can deal with the ones who act like I'm the world's worst mother, because I know better. I love my kids and I believe that God gave them to me for a reason. What really bothers me is the ones who are rude to my kids. My kids may not notice the rolled eyes, muttered comments, or annoyed and impatient tones, but I do. I try to do what I can to educate people so the next time they come across a child who appears to be hyperactive, overly stressed, takes a little time to express themselves, just seems tuned out, or having a meltdown, maybe they will be a little more understanding.

6. WHAT IS THE BEST THING?
Wow, where to start. My kids are amazing, and I am blessed to be their mom! I love learning from them, and it is so fun being around someone who has such a unique way of seeing the world around them and expressing themselves. I love that my boys are so energetic and that they aren't afraid to be themselves. They very bright and creative. They pick their friends based on who is nice, they don't care about (or even notice) superficial qualities. I also love being able to do our own thing. We have made our little corner of the Twilight Zone (aka Schmolland?) into a pretty cool place to be :).

7. HAVE YOU TRIED THE DIET AND DID IT WORK?
Nope. The food we'd have to cut out is pretty much everything on the short-list of what our kids will eat.

8. WHAT ABOUT OTHER BIOMED TREATMENTS- HBOT, CHELATION, ETC.?
Nope. Autism is just a part of who they are. It's not an illness, their brains are just wired differently. No treatment is going to rewire their brains, and I wouldn't want to even if we could. It's possible that a child could have medical issues in addition to autism, or medical issues w/ symptoms that appear similar to autism, in which case biomed treatments might be appropriate, but we don't feel that is the case with our children. We have focused our efforts on therapy to help them overcome their specific challenges.

9. WHAT METHOD OF ABA/Behaviour Therapy DO YOU LIKE BEST?
We have done a combination of things. Our own version of floortime has been helpful, as have picture schedules. We've done a lot of speech and OT, and we've learned to incorporate that into our daily routine at home too. Gaining a better understanding of their sensory issues has been invaluable. Also, learning how to communicate in a way they can better understand has helped.

10. IF YOU COULD MAKE EVERY PARENT TRY ONE THING- WHAT WOULD IT BE?
I wouldn't presume to say there is any one thing that will help every child, but I would encourage parents to familiarize themselves with sensory integration issues. That was one thing that had a huge impact on our ability to understand some of the reasons underlying our sons' behavior. It also really opened our eyes to appreciate some of the sensory challenges they were dealing with.

For example, most of us just take for granted being able to tune out most of the sensory input around us and just focus on one or two relevant things at a time. We don't realize that not everyone can do that, and how overwhelming the world can be to someone who doesn't have that natural sensory "filter" and is bombarded with every sight, smell, and sound around them all the time.

11. WHAT DO YOU THINK THE RATE OF AUTISM REALLY IS?
I don't know. I believe the estimates of 1 in 150 are probably pretty accurate. I think the fact that statistics now show this has helped to promote awareness, which is a good thing. On the other hand, I don't like the way the media sensationalizes it into a "doom and gloom" epidemic though. My personal opinion is that it has always been that way, but that in the past those with autism were often either misdiagnosed or not diagnosed at all.

12. HOW MANY KIDS WITH AUTISM LIVE ON YOUR BLOCK?
I don't know of any others on our block, but I know of at least one who lives nearby. And considering the number of kids with autism in the same school with our boys, there are obviously a lot living in the surrounding area :).

13. HAVE YOU EVER MET A RECOVERED CHILD?
No. Honestly, I don't like the term "recovered" because autism isn't an illness or something that can be outgrown. Our children will have autism / be autistic their entire lives, but it brings both challenges and strengths. Our job as parents is to help our kids learn to cope with their environment, to overcome their challenges as much as possible, and to capitalize on their strengths and reach their highest potential. They have as much potential for success and to contribute to society as any other child.

14. WHAT KIND OF EDUCATIONAL PROGRAM DOES YOUR CHILD GET?
Cuddlebug and Bearhug are in an ASD program at school (not our "home" school but not too far away either). They are each in a regular ed class and that is where they spend most of their day, with pull-out as needed (for speech, sensory breaks, assignments that require extra focus like writing, etc.). They have a resource teacher and two parapros that work with them and the other kids in the ASD program, both in the regular ed classroom and the special ed classroom. They have social skills groups that include both ASD and NT kids, and the teachers make it fun so the NT kids want to be picked to join :). They have a speech therapist and OT who works with them at school also. They have been in this program since Kindergarten and it has worked out really well - the teachers and staff are awesome!

Little Bitty is in a self-contained ASD class at a special needs preschool (5x a week, 6 hrs a day). He also gets speech and OT support at school. He attends the same preschool that his big brothers went to, and we love the teachers and staff there also (we are very fortunate to live in an area with great support for ASD kids, I know that is not the case everywhere).

15. DO YOU GET SERVICES/TREATMENTS THROUGH YOUR HEALTH INSURANCE?
We have in the past, but we don't during the school year. There really isn't time after school to do therapy and still have the boys keep up with their homework without totally overwhelming them (and us). During the summers we reassess the need for private speech / OT. Our insurance pays a portion of that, which helps.

16. DO YOU THINK THE DIVORCE RATE IS REALLY 80% FOR ASD FAMILIES?
I don't know but that is the statistic I've heard. It's really sad if that is the case, because parents need each other more than ever when facing the challenges of raising special needs children. I've also heard that the divorce rate for parents of twins is high, so considering we have autistic twins (plus one) and are still together I'm glad we are beating the odds.

17. DO YOU HAVE A GOOD POOP STORY?
Just one? Hehe. Once when Bearhug was two, he woke me up by handing me a poo-ball, I guess it had somehow rolled out of his diaper and he figured that was a good way to let me know he needed a diaper change... needless to say I jumped out of bed pretty quick once I realized what it was.

When he was 6, Bearhug told me out of the blue, "poop is sticky." Hmmm... ok, thanks for sharing. I figured he was commenting on something he'd seen in Bitty's diapers and didn't think much of it. Then he said with a grin, "I know because I touched it." Ewww, I realized he had just been in the bathroom a few minutes ago, put two and two together, and told him to go wash his hands! Then he sniffed his hands and said they didn't smell bad. Double ewww, I told him I didn't care and to go wash them NOW! (yuck!)

18. WHAT IS THE STUPIDEST THING ANYONE HAS EVER SAID ABOUT YOUR KID?
Someone actually said once that my twins were "good birth control." They were about 18 mos old and screaming hysterically, we had taken them somewhere new and they were totally overwhelmed. As soon as we left, they calmed down.

There have been other stupid comments, but that, by far, was the worst.

19. WHAT DO YOU SAY WHEN SOMEONE ASKS “WHAT IS AUTISM?”
I love it when people are actually curious and open-minded enough to ask instead of just making assumptions. I try to make a point of telling them both the positive and not-so-positive things about autism. I want people to recognize that when my kids are struggling with something, or having difficulty responding to situations the way their peers do, it is not always something they can control. I also want people to know that they have some pretty cool talents and if you open your heart and get to know them, you'll be glad you did :).

20. WHO IS YOUR “AUTISM COMMUNITY HERO”?
I would have to say our sons' special ed teachers / parapros. They go out of their way every day to help our kids learn to be successful in school and they genuinely care about all of the kids they teach. I have heard so many horror stories about unsupportive schools, I am just so grateful to have teachers who work together with us so well and have our kids' best interests at heart.

21. WHAT GROUP/ORGANIZATION DO YOU THINK HAS DONE THE MOST FOR THE COMMUNITY?
We have a local autism parents group. We don't go to the regular meetings (they are on school nights) but they run several weeks of summer camp for kids with autism. They get donations from the community to help offset some of the cost, and the camps are staffed mostly with ASD teachers and parapros. We've been sending our twins since they were 4 and they love it! Little Bitty will attend for the first time this summer. They also have family activities sometimes and we try to go those when we can.

22. DID YOU VACCINATE YOUR CHILD AND DO YOU CONTINUE TO DO SO?
Yes. I found a ped who uses thimerosol-free vaccines (one doctor's office I called actually laughed at me when I asked, needless to say we didn't bother going to visit that one), and after our twins were dx'd we made arrangements to do their remaining vaccinations on a slower schedule (still within CDC guidelines but at the older end of the ranges and not so many all at once). We've done the same with Little Bitty and will continue to do so. I don't think vaccinations had anything to do with their autism, but still prefer to be careful.

23. DOES YOUR FAMILY ACCEPT YOUR CHILD HAVING AUTISM?
Yes, I think so.

24. WHAT LESSON HAVE YOU LEARNED AFTER ALL OF THIS?
We're still learning! So far I have learned more patience than I knew I was capable of. I already thought of myself as a relatively patient person but this experience has pushed me to a whole new level as far as that is concerned :). I have also learned to trust my instincts and trust in my and my husband's ability to teach them and to figure out how best to help them. I have always been one to try to learn what I could from the "experts" but found little to no useful advise from the so-called parenting experts so I finally had to toss conventional wisdom out the window, be willing to experiment and do whatever worked, regardless of what anyone else might think.

25. IF YOU COULD GO BACK IN TIME, WOULD YOU CHOSE FOR YOUR CHILD TO BE NEURO-TYPICAL?
No way! I will continue to do what I can to make the world a more accepting place for them, but I would never want to change who my kids are. They bless our lives just the way they are (I wrote more about that here).


Here are links to some of the other "25 things" posts I saw, if you have one too leave your link in the comments and I'll add it here:

A Celebration of our Journey
My Inner Bitsy
Moms of Special Needs Children
Spectrum Siblings




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17 comments:

Amazing_Grace on February 14, 2009 at 1:31 PM said...

WOW! That was good! It always seems to blow my mind how many children with ASD have all these great educational programs that are available to them where they live. NOTHING like that was available when my son was little. He's the one that paved the way for all ASD kids in the county. It could have been so much easier for him if things were different. I'm glad that others in our area are benefiting from our plowing through our school system. LOL! I don't think they will ever forget us. :)

lonestar on February 14, 2009 at 2:03 PM said...

@Amazing Grace - I have so much gratitude for families like yours who have paved the way! We are so fortunate to have a great school situation for our boys. Hopefully that will continue into middle school and high school. And hopefully we are doing our part to make the community as a whole more accepting for the families dx'd in the future. Thanks for your comment!

Julie on February 14, 2009 at 3:54 PM said...

Thanks for letting me know that you played! It's so interesting to read about what other parents think and have to say. I especially liked your answers to # 8 and 10 as I am still trying to wrap my mind around these things!! Thanks for all you do to raise awareness in a positive way!

Rebecca on February 14, 2009 at 8:38 PM said...

I really enjoyed your answers! I think it is so great that we can all share our viewpoints so openly. I have been following a few people on Twitter who just get completely wigged out when someone expresses something different - the fact is that we can all learn from each other.

((HUGS))

BTW, I saw yuor political blog and I love it!

GA MTNS on February 14, 2009 at 9:19 PM said...

That was so informative! Thanks for sharing...I love to read your post! Your boys are so blessed to have you as their mom!!

Dianna on February 15, 2009 at 6:20 AM said...

Thank you so much for sharing all of this with us. You are an amazing mom with amazing boys!!!

therextras on February 15, 2009 at 9:41 AM said...

Excellent post, lonestar. Full of useful and encouraging information for everyone who reads.
Barbara

Kajoli on February 16, 2009 at 10:40 AM said...

LOVED this post
I am going to do the same

My Three Sons on February 16, 2009 at 3:34 PM said...

I think that is all excellent information. Carson is scheduled for Autism testing on March 9th. He is currently in OT for SPD and has been since last Sept. I have seen a lot of improvement with him. Like for instance, when we play outside, if he fell down, he would have a meltdown until his hands were cleaned off. Now he can at least remain calm, but still needs those hands cleaned.

I think the thing I have had to learn the most.....more patients.

Khadra on February 16, 2009 at 3:35 PM said...

I love this post :)

Elizabeth Channel on February 16, 2009 at 11:02 PM said...

Your school situation sounds amazing, and your attitude in general is so uplifting and encouraging! I'm looking forward to reading the rest on this list.

The Farmer Files on February 23, 2009 at 5:22 PM said...

This was so open and honest. I enjoyed!

Trish on January 12, 2011 at 9:45 AM said...

Very nice post - I appreciated learning even more about you thru this and wish we had such a well thought out school program here. I'm a bit jealous!

Apples and Autobots on January 12, 2011 at 2:17 PM said...

Wow! I loved reading your answers. I think you and I have a lot in common. Thanks for stopping by my blog.

bigalphy on January 12, 2011 at 5:58 PM said...

Very informative and witty post. You're a good mother, thank you for sharing.

Jen on January 12, 2011 at 6:19 PM said...

We have the same views on a lot of things:) I loved to see no 20 because I too love when people just ask, it isn't that hard and they won't offend me, not as much as the judgemental types anyway :) Love to meet you. Jen

Kelly on January 13, 2011 at 3:54 PM said...

I know very little about Autism so this was a very interesting post to read. I came here via the Blog Gems.

 

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I'm a mom of three boys on the autism spectrum, 11-yr-old identical twins and a 7-yr-old. My husband is a SAHD.

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