What we know

Tad is a very interesting child.  If you read this blog regularly, you already knew that.

Right before Rerun was born, I took Tad for yet another consultation with his pediatrician about his ongoing behavior issues.  I knew that the time was coming when we could get some kind of firm diagnosis about his behavior, but I had no idea who to see.  Dr. N. sent us to a pediatric psychologist, Dr. S., who has a private practice on Saturdays.  Her “day job” is as the clinical director at the University of Washington Autism Center.

In other words, we were heading to a professional.

As we were nearing the end of the school year last June – and after Rerun was born and the chaos that comes with having a newborn in the house settled down – the Webmaster and I finally took Tad to have a two-session assessment with the psychologist.  She was extremely kind to Tad, listened carefully to us, and took copious notes.

At the end of the second session, and after playing with Tad, interviewing us, and reviewing all the information we’d provided for her and the tests I’d filled out on Tad’s behalf, she delivered her diagnosis.  Tad has a mild form of autism.

I think I spent the first few weeks after the diagnosis in a mild state of shock.  Tad was no different than he had always been – he was still my sweet boy, funny and shark-obsessed.  And yet… and yet… and yet.

It was truly a mental exercise to wrap my mind around what we had been told.  But we had little doubt that the diagnosis was accurate.  One of the first things I had asked the psychologist was, “Are we too late to help him?”

The answer was an unequivocal NO.  Dr. S. felt that since Tad had always responded well to therapy, and had never regressed in behavior, if we started him on ABA (applied behavior analysis) therapy and extra autism-focused speech therapy, it would begin the process of getting Tad where he needed to be.

Naturally, we got the diagnosis the day after the last day of school.  Perfect timing!

I spent the summer researching autism (via both the Internet and books) and getting Tad into both speech and ABA therapy.  And God must have seen my heart’s desire, because doors just opened up for us with speed and ease.  By the time school started, and Tad began kindergarten in the CLC, he had spent most of August with his new speech therapist, and had just met his ABA therapist at the UW Autism Center.

So, this is what we know:
Tad has a mild form of ASD (autism spectrum disorder).  He is considered to be mild and high-functioning because he does not exhibit the “severe” behaviors, like repetitive actions or violent tantrums.  He does have pronounced “obsessions,” but as Dr. S. pointed out, the things that Tad is “obsessed” with are very normal or understandable things.  While Tad has a great love of sharks, no child has ever questioned why Tad likes sharks.  Or Star Wars.  Or Pixar movies.  Other kids get these things.  We have heard stories now of children obsessed with light switches, vacuum cleaners, and forks.  Things most kids never think twice about.  It’s examples like this that tell us so much about where Tad is on the spectrum.

However, Tad does not have Asperger’s syndrome.  His speech issues are much more severe than a typical Asperger’s child would have, and he exhibits more behavioral issues than a lack of social skills.

He is currently in speech therapy and in ABA therapy to address his communication skills, his speech, his behavior, his adaptability, his ability to generalize concepts… I’m sure the list goes on and on.  And he is responding so very well in so many ways.  But part of the change has been a change in my expectations of him.  I have become a student of Tad.  I have made it my job to figure him out.  And it is not an easy task, because more often than not, I don’t know all the rules and I have to start over.  But I’ve stopped banging my head against a wall, trying to figure out what is going on.  Having a diagnosis is both a blessing and a curse.  We are no longer groping around for answers… but that doesn’t mean that the answer is easy to accept.  After all, it’s taken me over four months to feel like it was time to write this post.

The diagnosis didn’t change Tad himself.  He is as he always has been – sweet, stubborn, affectionate, silly, quoting Star Wars movies and wielding his lightsaber, bickering with his sister, crazy about sharks – nothing changed because a label came in.  The ASD was always there – we had just never been able to see it for what it was.  When you’re as mild as he is, it’s easy to fly under the radar for a long time.

So, now what?

Tad’s ongoing journey – because it is that – will be marked in a new category on the blog that I am calling “Autism Adventures.”  The “Speech Therapy Saga” that we have living on has now morphed into a lifetime’s adventure of equipping Tad with the tools to become an independent and self-sufficient adult.  However, this blog is still “Deanna’s Corner.”  This is still my life and my blog, and so Tad’s life is not taking over.  I have no intention of this becoming an “autism blog.”  I will just be writing about it as it relates to my life and Tad’s.  I am also not going to be drawn into any arguments or controversies over autism on this blog.  There’s a saying that goes, “If you’ve met one child with autism, you’ve met one child with autism.”  I am going to be an autism expert on only one child – mine.  I have opinions – everyone does.  With rare exceptions, my opinions on autism are not going to show up here.

Tad’s trial period on the gluten-free diet will soon be coming to an end, and we will be having a “jury” weigh in on whether or not it truly affected his behavior.  We are not telling people when he goes off the diet, so as not to color any “juror’s” opinion.  There has been so much going on for Tad – new therapies, new school, all this work put in – that we want an impartial decision on whether or not this diet has made any difference.  When there is a verdict, I’ll let you know.

Are we worried at all about Rerun?  Not really, even though he is now considered “high risk” for developing ASD because he has an older sibling with the disorder.  We have him enrolled in an research study through the UW for “high risk” infants, which will be monitoring him until he is three years old.  He’s already had an MRI as part of the study, and as of right now, the researchers consider him to be right-on-the-mark normal for his age.

Have we explained all of this to Ane?  No.  She believes that her brother is just weird and annoying, and we’ll just let her think that until she’s old enough to understand what all of this really means.  Right now, she’s not ready for all the details.

In the meantime, please be praying for us all.  We have our ups and downs, as does any other family.  Nothing about us has really changed.  We just know what we’re facing now.  So, as you read along with us, please keep us in your prayers.  Thanks for coming along for this adventure.

5 Responses to “What we know”

  1. linda
    October 25th, 2010 10:35

    Prayers, Love, Respect, Humility and, always, Family Love are yours from us!
    Give Ane, Tad and Rerun (Mom and Dad, also!) BIG hugs from us!

  2. Ressis
    October 25th, 2010 13:32

    We love Tad just the same as before, as we love and miss all of you. Keep us posted on the progress to come! You’re in our thoughts and prayers.

  3. Aunt Lynda
    October 26th, 2010 15:05

    Not being one for labels, Tad is just Tad to me. And he coulddn’t have better parents, as far as I’m concerned. You have a big support group, much larger than most. Charge!!!!

  4. Aunt Mary
    October 27th, 2010 18:08

    Tad is so fortunate to be having excellent therapy and at an early age. That is due to his two parents who are seeing that he is receiving the best treatment available. This will surely show in his progress in the years to come.
    Love and prayers to all of you.

  5. Deanna's Corner » Blog Archive » Six Years Old
    August 12th, 2011 01:54

    […] were formally diagnosed with autism a little over a year ago, and you have been in ABA therapy and speech therapy consistently ever […]