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A feel good story on Autism

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.

 

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

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10 Comments

  1. Emma Jayne
    December 19, 2010

    Ok…could we have MORE in common? Thanks for sharing this and for having the courage to open up. I still have problems writing about the early times because it was just too painful for us all. You are one rockin beeatch….

    • Lynn
      December 19, 2010

      I think you’re going to need to email me about this! What’s going on? Thanks for reading and commenting. I’m not brave, just open.

  2. Yuji
    December 19, 2010

    Thanks for sharing your story, Lynn. My six year old son sounds similar to how your son was when he was about that age. Right now, it is hard for my wife and I to picture how our son might be when he is older. Sometimes it is easy to think that he will just be a larger version of the way he is now. So, thanks for providing a positive picture of what could be.

    • Lynn
      December 19, 2010

      It’s comments like this that make me soooo glad I shared this story. Sometimes, a little hope is the best medicine of all! Thanks for reading and commenting.

  3. Mandy
    December 20, 2010

    My litte brother(he’s 30 now) has severe autism. I know from experience how hard the diagnosis can be on a family. Thank you for sharing your story Lynn! Can’t wait to see ya at Blissdom! I’m @wellreadwife on twitter:)

    • Lynn
      December 20, 2010

      Thanks for the comment. I’m sorry about your brother. It’s always tough, but truly, we were lucky and Daniel is basically on a normal developmental track. Other than some minor organizational and sensory issues, he is 100%. I’m glad that this story resonated with so many people.

  4. One Blonde
    April 6, 2011

    Very inspiring, and comforting.I hate this thou. Its not right. You expect disease as you get older, but its just not right that these things effect our poor helpless children. It just rips your heart out Thank you for sharing your story. If you were like me, it was probably very hard to get out, and to rethink the moments. But does feel good once you get it off your chest.

    • Lynn
      April 6, 2011

      When I wrote the original post it was pretty emotional and I hadn’t thought about that stuff for ages.

      I’m glad I did though because it gave people hope and that’s always in short supply.

  5. Erin Margolin
    July 3, 2011

    awesome post, Lynn. And although none of my kids has autism, I have friends who are dealing with it. Your son sounds amazing and I’m glad you’ve had so many helpful resources and such a positive outcome!!

    xoxox

    • Lynn
      July 3, 2011

      Thanks…was a long yet worthwhile journey

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