xmlns:og='http://ogp.me/ns#' Yeah. Good Times.: Guest Blogger: Autism Success Story Part 2

Saturday, December 18, 2010

Guest Blogger: Autism Success Story Part 2

Here is Part 2 of Lynn's Autism Success Story

Daniel at 17 with his sister Keely, 20
The book that changed our life: The Out-of-Sync Child.  I read this book and I couldn’t believe it…this was MY CHILD.  It was like I had a jigsaw puzzle in front of me and all of a sudden, I saw the picture.  We contacted Developmental Therapy Associates in Durham, NC.  This is about an hour from our home.  We received the questionnaire in the mail and I couldn’t believe it. There, on paper, were all the little strange things about Daniel that I had never really thought about and these people were asking me about them.

Head banging…check.
Tuning in and out … check
Unpredictable behaviors … check
Easily distracted by sounds…check
Trouble shifting attention … check
Trouble delaying gratification … check
Fidgety/overactive … check
Always in a hurry, does many things too quickly, fails to learn from experience…check, check, check

Hundreds of little questions and hundreds of little checks.  OH MY GOD!

They recommended Occupational Therapy Services with a Sensory Processing approach but the biggest thing they recommended was an intensive deep touch at home program for Daniel.  They hand me a surgical scrub brush…yeah, a crappy little surgical scrub brush…and tell me that I need to SCRUB Daniel 6-8 times and day followed by Deep pressure joint compression.  They tell me that Daniel will be a different child in two weeks.  WAS I skeptical?  HIGHLY.  I couldn’t believe the bullshit they were selling.

But what did I have to lose?  Let me be honest here.  This process SUCKED.  You took the scrub brush and brushed Daniels arms, legs, and back with the brush as hard as you could.  Then, you took his major joints: shoulders, elbows, fingers, knees, hips, ankles and pushed and pulled them.  It was excruciating for Daniel and in fact, took two people to do at first.  He would be hysterical and I would be scrubbing his back and then compressing his joints … every 1 ½ or so.  He was crying; I was crying.  There’s no nice way to explain the process other than tormenting your child, even for their own good, bites.

But guess what?  In two weeks Daniel MacDonald was a different child.  A DIFFERENT CHILD.  He was calmer and would walk around barefoot; he wasn’t as crazy about his clothing.  He was just more open.  I just couldn’t believe it!

We continued going to DTA for over a year, twice a week. It was an ordeal and we listened to a lot of books on tape during the ride. Occasionally I took the girls along with me and they, of course, thought it was loads of fun.  After all, you do a lot of rough and tumble play in that type of therapy.  Daniel was also in speech therapy here in Greensboro and he was attending a pre-kindergarten program as well. 

Keely and Andie were in a Private school; I had an IEP drawn up by the public school system but, very frankly, I really didn’t want Daniel in one of the special programs that he would have been assigned to.  The school where my girls went agreed, on a provisional basis, to allow Daniel to attend school there.  It was contingent on his behavior, his staying on meds, continuing his Occupational Therapy, receiving even more OT on his hands ( he was ambidextrous…although lousy with both), Speech thereapy…you name it.  They had the right to boot him out at any time.  We signed the contract and so began Daniels schooling.  We had extra conferences to discuss the many occupational and behavioral issues that we had to deal with but, when Daniel entered 5th grade, they told us we no longer needed the contract.  That was a good day!

When Daniel was in 2nd grade, his speech therapist game him a standardized test on some mental retrieval skills.  He scored in the 1%.  That’s right, the first percentile.  I had always wondered about those poor people in the lower percentiles as my girls were always scoring in the top and now we were one of them.  It was a truly humbling moment.

I was panicked in middle school because Daniel couldn’t write; not handwriting wise…although that was terrible too.  Because he had huge retrieval problems and organizational issues, he wouldn’t know where to begin on a story or essay.  If you asked him what he DID that day, he could write down a series of events BUT if you asked him what he THOUGHT about what he did that day, he was stymied.  I was really worried because, with two older sisters, I knew how much writing there was in Middle School and High School.  I figured that there was no way he would get good enough grades to get into college with these huge holes in his abilities.  He got tutored, twice a week.  They assured me that organizational writing skills were something that could be taught.  I didn’t believe them.  I was wrong.  He’s now in AP English and he’s got an A.  He’s always gotten A’s.

So, here we are.  I know this is long and yet I’ve skipped SOOO much.  Daniel had plenty of aggressive circumstances in school where I was required to go in and deal with other parents.  He hit occasionally and once led a huge rebellion because he didn’t want to do something.  He has called people names and it took years to get his temper under control.  I can’t even tell you how many Xbox controllers he’s broken.  And yet, you’ll never find a sweeter, more caring individual than Daniel.  He’s friendly and loving and people really love him.  And he’s smart…boy is he smart.  In 7th grade he got National Honors on the Duke Talent Identification Program.  He just took PSAT’s and I’m sure he will be a National Merit Semifinalist.  He’s brilliant at Math and his writing has improved.  His grades are incredible and every year he receives academic awards.  He’s a huge sports fan and has copious amounts of knowledge.

He’s 17 and in one year he will head off to college.  Does he still have issues?  Yes, he does.  Although he no longer takes Prozac for anxiety, it took 3 separate tries before we could wean him off the stuff.  He definitely has SAD, Seasonal Affective Disorder.  He gets extra time for writing and prefers using a computer as writing is still difficult for him.  He still rocks when he studies…he must have about 70 elbows because he’s always jabbing you when you cuddle with him.  He definitely has Sensory Issues to this day. 

I forgot to tell you about the two weeks we spent dealing with his hearing issues.  That could be an entire posting unto itself.  Let me say that his hearing was so acute that he could hear sounds that dogs could hear and was always in excruciating pain.  He once demanded I turn the windshield wipers off because the noise was killing him; he had to wear ear muffs in movies, the list goes on. 

So, here we are, back to today.  I told Daniel this morning that I was writing this.  He doesn’t remember a lot of it because he was so young.  He’s interested in it though and this morning he asked me “do you think that’s why I’m so fidgety?”  Yeah, I do.  He also wanted to make sure that I told people that this is HIS story and not to lead people to believe that EVERYTHING can be fixed.  I told you he was a sweetie.

So, I wrote this piece yesterday and then I was somewhat emotional all day afterwards.  I hadn’t looked at the records in so long that I’d forgotten how horrible that period was.  I suppose when you look back on something that is so frenzied, it’s difficult to remember all the details.  As I was talking to my husband last night, I once again apologized for not taking his concerns seriously earlier.  I think that when Daniel was with me, as his primary caregiver, that his problems weren’t as acute. 

Kevin had much more difficulty in dealing with Daniel’s behavior than I did.  He didn’t know all the little cues to his personality thus he could never forestall the impending storms.  Daniel’s tantrums and melt downs completely changed my parenting style.  When he started wigging out, I got dead calm.  I quickly learned that the best way to intervene was quietly, calmly and methodically.  This one change was such a great way to be with all three of my kids that I’m actually thankful for it.   It usually kept the situation from escalating and taught the kids how to calm themselves down as well.

At any rate, I did want to once again remind you that this was Daniel’s journey.  His results were excellent and his outlook is fantastic.  While everyone might not receive the exact same benefits that we did, I hope this story brings you hope.  Thanks for letting me share.

Lynn MacDonald


Lynn MacDonald said...

Just a little sidenote. Keely had a massive pelvic tumor last year while at Duke and had major surgery and spent 6 months on crutches. She's a success story in her own right! Thanks for reading and if you have questions, i'll be happy to answer them. Thanks,
Lynn MacDOnald

lebelinoz said...

Great post. One question: why do you reckon the intense scrubbing therapy worked? It sounds like absolute quackery when you first start describing it, but I can't argue with the results!

Anonymous said...

My son's teacher recently suggested scrubbing for him. He has meltdowns every single morning after changing clothes, and she thinks it might be a sensory thing. It has gotten so bad that he cries for an hour straight. I am so glad to read that this worked or your son. Thank you for sharing your success story!

Lynn MacDonald said...

The scrubbing works like this. It literally spazzes out the system so that it corrects itself. I HIGHLY recommend this for anyone who has a young child with these issues. Like anything else, your body can adjust to things. If there was ONE single thing that made a difference, scrubbing was it. It was HELL, but absolutely worth it!

Lynn said...

We did the skin brushing and joint compression for a long time too. My daughter doesn't have the same intense sensory issues though. Although we did the brushing when she was very young, so maybe she doesn't have as many sensory issues because of it. Great story...thanks for giving us hope!

Anonymous said...

Hi there. I have worked with autistic children for 9 years doing ABA, tutoring, sensory integration etc. After having my own children now I started working privately for a family. To be honest, I sometimes doubt the work I do. I often wonder if I make a difference in these children/families lives. Your story reminded me of why I do what I do and the passion I have for these families to help make a difference. Thank you SO much for sharing. You sound like a courageous woman and your son sounds like a fighter. thanks again.

Wantapeanut said...

We do the brushing as well, though not the full schedule. This is making me think we should try it more seriously.

This is just what I needed to hear right now. My son, 3 1/2, is having such a hard time and I need to believe things are going to get better someday.

laughing through tears said...

The Wilbarger Brushing Protocol with joint compressions did amazing things for my sons, too-- I need to dig out my brushes and get going on that again over this LONG Christmas break at home!

To those not familiar with the therapy; it sounds much worse that it is. You "scrub" the child, but the brush is incredibly soft. It doesn't hurt at all unless you hold the brush at the wrong angle (vertically instead of horizontally), so... don't do that. My kids actually used to bring the brush to me when they needed it, if that tells you anything.

Anyway, I loved reading your piece, Lynn. Thanks for the inspirational story.

jillsmo said...

Lynn, a reader emailed me a question: "Can you please tell me the meaning of -trouble delaying gratification? Thanks."

Anonymous said...

Thanks so much for sharing your story with us. I am sending this over to my grandson's Mom as I don't know if she even reads blogs. She'll read this one for sure.

Thanks again,

Lynn MacDonald said...

Meaning. You can't have a cookie until after dinner or you are so impulsive you can't wait to do something like play outside.

Anonymous said...

Before I head off to google any and everything I can find on Aspergers I want to say thank you a million times. Talk about missing puzzle pieces! My daughter is almost 10. She was dx'd with bipolar, adhd, and odd when she was almost 5. She is also treated for SPD. I have only had glimses of her "stable" and we can never seem to get it just right! We see a new pdoc on the 7th of next month and I will be prepared! Jill and Lynn, y'all are awesome.

Cheryl D. said...

Again, thanks for sharing! This story gives me great hope about my daughter!

DB Stewart said...

Amazing. Posting this information is going to help a lot of parents, and teachers.

Yuji said...

Thank you so much, Lynn, for sharing your story. It does give hope to those of us with younger kids.

Amy@TheCircusMcGurkus.blogspot.com said...

Thank you for sharing. My son was recently diagnosed with Autism and we are in the period you described as being so horrible. Every day is a struggle and I have to believe that one day it will all be worth it. I know that your child and my child are not the same, but it does give me hope each time that I hear a success story of one more child with ASD.

Post a Comment

Note: Only a member of this blog may post a comment.