Guest Blogger: An Autism Success Story

Last week I made a new friend on Twitter, Lynn at All Fooked Up. We started chatting and I guess she stopped by here and saw that I had a kid with autism, and she told me that her son, who is now 17, was diagnosed on the spectrum when he was 4. He's now a junior in high school and he will graduate next year and most likely go to Duke, like his sisters. I said OMG a success story! and I asked her guest post for me. It's long, so at her suggestion I have split it into 2 parts. Here is part 1, I will post the rest tomorrow.

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Daniel, at 3 years old

ASD, PDD, SID, ADD, WTF?

Before I begin talking about Daniel, his diagnosis and all that entails I would like to make one thing clear.  This is Daniel’s story told from my viewpoint.  Autism Spectrum Disorder is just that; a spectrum.  We were very lucky.  Although Daniel was diagnosed with Asperger’s, he was very high functioning and indeed, I don’t even believe that was a correct diagnosis for him.  He also had a tremendous amount of intervention which, for him, was VERY effective.  Therefore, I don’t want people to get the wrong idea that Autism can be “fixed”.  Symptoms can be fixed; certain issues can be fixed and indeed, I’ve been both surprised and amazed at how many problems that seemed so bleak have proven to be otherwise.

So that’s my first point.  My second point is that we were very lucky in that we had the financial resources to do what needed to be done, as well as, access to tremendous programs due to the proximity of both Duke University and The University of North Carolina at Chapel Hill.  We certainly availed ourselves of their services.

My third point is that we were driven.  I tell anybody who listens that Daniel MacDonald was the single greatest achievement of my life.  He was intensely broken and while I can’t claim to have “fixed” him, I spent copious amounts of time and research finding the people who could.   Any test that was available to take, Daniel took.  Although I had already had psychological testing, sensory integration testing and others; I also utilized every state service that North Carolina and the Guilford County school system had to offer.  Even if it seemed that I already had all the information at my fingertips on the makeup of the boy who was Daniel, there was ALWAYS the chance to learn something new.  I always took that chance.

Now that I’m done with my disclaimers, I’ll begin the story…

Daniel is my third child but my fourth pregnancy.  Andie had followed on the heels of Keely, unintentionally I assure you.  The next time I wanted to wait as having two kids fifteen months apart wasn’t easy.  Adding to the stress was the fact that Andie had severe asthma and indeed, was on a nebulizer four times a day.  So, I wanted to wait a few years to try for a boy.  I got pregnant instantly but, unfortunately, I had an ectopic pregnancy.  We always refer to this child as the MacDonald that wasn’t.  That’s just how we cope around here.  At any rate, on August 11, 1993 Daniel MacDonald was born.  We knew he was going to be a boy and we were elated to have both sexes accounted for now.  Other than the fact that he had the HUGEST overbite I’d ever seen (seriously…he looked like that guy on the Simpsons), he was a beautiful baby.  Actually, he was huge… 8 lbs, 10 ounces which compared to his sisters who were 6-15 and 7 pounds, he was huge. 

So, he was with us and he was just your normal, typical baby.  None of my kids were early developers and Daniel was no different but he crawled and eventually walked; talked poorly but still communicated; no big deal in my opinion.  He also had a LOT of strange idiosyncrasies but, as he was so beautiful, I didn’t give them a second thought.  It took two of us to trim his nails while he went apeshit; haircuts were a screaming mess; clothes drove him crazy; he would never go barefoot…the list was endless but, as I said before, he seemed perfectly normal to me.  If he had screaming fits, so what?  Andie did too and she was fine.  Daniel had bad ears but then, all my kids had bad ears.  He got tubes at 6 months and if I could have gotten them inutero I would have done so.  All my kids had bad ears, bad ear infections, and multiple sets of tubes so again…so what?

My mom died when Daniel was three.  I certainly won’t go into details but needless to say, it was a stressful period on the homefront.  Keely was in first grade, Andie was in kindergarten and Daniel was in preschool.  Life was stressful, but normal as any life would be with three small kids and that situation.  The next fall, Daniel started his last year of preschool.  He had an August birthday and was one of the youngest in the class.  

In January of 1998 when Daniel was 4 ½ years old, he got thrown out of preschool because he was having aggressive incidents four or five times per day.  We were told that Daniel needed to be evaluated.  This was a big deal as I had been the previous CHAIRPERSON of said preschool, so this was not taken lightly by the school so they must have felt that something significant was wrong.

This is so out of order but I need to address the previous fact.  One of the toughest thing that can ever happen as a parent is to have a child with issues and have parents that are completely on different pages.  To write this story, I went upstairs and I got all my records and I’m going to put down, verbatim, what some of them said.  I never felt like I was in denial; I just didn’t think anything was a big deal.  I had grown up with a huge medical situation in my family and I usually roll with the punches.  My husband felt otherwise but I ALWAYS pooh-poohed him.  Here’s what the report said:

“Mrs. MacDonald does not remember specific developmental milestones, but does feel Daniels language development was somewhat late.”

“Daniels father reports feeling something was wrong with Daniels language or communication over a year ago. It is very difficult to teach him new things, including alternative ways to behave.  He doesn’t seem to respond appropriately in many situations.  Daniels mother feels her son is capable of having any conversation that he chooses but that he chooses to ignore people often.  The parents considered Daniel to have peculiarities, but were not particularly alarmed by them.  His mother has always expended great energy to adapt to Daniel’s needs and avoid setting off the numerous catastrophic reactions Daniel experiences.  His father is more frustrated by these episodes and has felt Daniel will not adapt in the world if he continues to require such special adaptations.  Getting him dressed is a major ordeal and the mother has not tried to make him dress himself.  The father may be more insistent that Daniel cooperate to get dressed and experiences more frustration.”

“Many areas of sensory processing were described as “different”.  He has a long history of auditory defensiveness.  He is highly stimulated by baths and loves water and swimming.  He loves being thrown in the arm (vestibular stimulations).  He is rigid in his clothing preferences.  He can’t modulate his moods.  He bites and insists that his food be cut into particular shapes.  He loves to play with other kids until something goes wrong in his route.”

“When Daniel walked into the examiner’s office, he didn’t greet the Psychologist; his eye contact was very limited but Daniel seemed to take in all the necessary information through peripheral vision”

I was with Daniel during the evaluation but sat to the side.  When Daniel got “silly” I intervened, usually with a bribe.  The testing wasn’t easy; Daniel could only focus for about 20 minutes before he got silly and yet, was smart enough to tell the Psychologist that “I don’t want to answer because she keeps saying stuff” referring to me.

As you can see, this is a pretty common picture of a kid with “Aspergers” which they diagnosed him with.  The recommendations included a structured environment, referral to the Project TEACCH program, referral to Developmental Therapy Associate in Durham, referred to a neuropharmacology clinic down at UNC-Chapel Hill for medications, referral to the Coordinator of Preschool Handicapped Services for the Guilford County School system; the list was endless.

Our reaction:  we were DEVASTATED, in a word.  We cried and went into Daniel’s room and looked at this gorgeous child and it just didn’t make sense how someone so precious could be so damaged.   One night.  ONE NIGHT!  That’s how long we mourned.  The next morning I got up, took the girls to school and went to Barnes and Noble.  I was there for four hours.  Remember, this was before the internet was really the internet so I literally read through every single book they had on Autism, Pervasive Developmental Delay, Bi-Polar kids, Oppositional Defiance Disorder.  If there was a book on it, I read it.  Operation FIX DANIEL was just beginning.

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