Autism Spectrum

I just came across this post that I wrote at the end of last January.  I did not have the courage to publish it then, but I am publishing it now, nine-months later.  I feel like it is helpful to share my story in case anyone else is struggling down a similar path.  Spoiler alert -- Isaac did receive the ADOS testing through the school district last May, nearly two years after we requested help from them and seven years after we first turned to professionals for answers.  His results did show that he is on the Autism Spectrum, what is sometimes referred to as Aspergers.  This information has been helpful in moving forward and creating a better life for him and for our whole family.  Here is what I wrote in January of 2014:

So many things are so good in our lives right now.  Preschool, freelance jobs, teachers, friends, family, health, love.  These amazing people that I get to spend my life with!  Life is good.

We've recently decided to be more aggressive about finding answers to some of our son's quirky behaviors.  I feel like we are being really blessed right now after a lot of dead ends over the years.

I have hope that finding answers, even when the realities are difficult, will lead us to more peace for our son and our family.

As a baby, he was the sweetest, most content, blue-eyed, curly blonde-haired infant.  At age one, he began displaying some behaviors that made us take note.  By 20-months we had him in an early-intervention program for speech delay (because he had words before age 1, but at 20-months he had none).  By age 3, I worried that we were being too paranoid and I took him out of the program (he was speaking by then).

He started half-day Kindergarten one week after he turned 5 and I hoped going to school would help some of the behaviors that concerned us.  When it didn't, I took him right to the pediatrician who then (and always) down-played my concerns.  We found a child psychologist who also proved unhelpful.  In an effort to jump to a diagnosis, he handed us evaluation forms for ADD/ADHD at the end of the session.

I sat holding the forms, paralyzed in my chair.  The psychologist asked me what was wrong?  I couldn't fill out the form.  I couldn't give one to his teachers.  This didn't seem right.  I didn't want him to be labeled.  I didn't want him to be medicated.  And, most of all, I didn't want anything to be wrong with my precious child who I loved dearly.

I agonized over each question before carefully marking my answers on a scale of 0-4.  He was only 5 after all.  I think I am a person who has a very broad expectation of a 5-year-old boy.  He had behaviors that concerned me, but it wasn't like I expected him to sit there with his arms folded all day either.  Who was I to say what was "normal"?

His scores came back elevated enough for them to recommend a medication.  With much reservation, I filled the prescription and I gave it to him twice.

It was a 3x/day medication.  I didn't give it to him 6x, I gave it to him 2x.  One pill one day and one pill the next.  Each time, his behavior got worse and more alarming.  When I reported this back to the Dr. and psychologist, they recommended different medication --anti-anxiety medication -- something I was not willing to try on a 5-year-old.  So, we stopped everything right there and I hoped time and increased maturity would solve things.

Time went by, and some things improved.  Progress was slow, but if I looked back at where we had been, I could see it.  The problem was that he kept getting older, and my expectations were increasing at a faster pace than his behavior was improving.

He finished half-day Kindergarten, and since his birthday is late in the summer, we opted to put him in another year of Kindergarten.  During both years of Kindergarten and his first-grade year, I had lengthy conversations with his teachers and his pediatrician.  But, none of these long conversations brought me any closer to understanding what was going on with my son.

I tried everything from rewards to punishments to ignoring the situation and mostly I tried lots and lots of patience and love.  I read books and talked to people and researched everything I could think of in more detail.  But, none of it provided the answer we were looking for.

In November of his second grade year, after several phone calls from the school, we decided to try ADHD medication again.  I didn't know what else to do?  The pediatrician was not helpful.  The psychologist was not helpful.  I had made multiple requests to the school for testing and help, starting at the beginning of his first grade year.  I was told as long as his academic scores were good, there was nothing they would do.  He is a very bright child.

A very bright child who needs help.

A very bright child who was becoming increasingly sad and down on himself.

I finally made a phone call that, after speaking to several people, put me through to a clinic at the University of Utah.  Suddenly, we had an appointment with a psychologist there.

We waited a month for our appointment (which, seemed incredibly fast). He took the ADHD medication while we waited for the appointment -- partly so we could report how it affected him. The only change in his behavior we could see was loss of appetite, increased difficulty sleeping and nausea.  I watched my poor son stop playing so he could throw up in the bushes more than once.  So sad.

It was such a breath of fresh air to meet with a nice psychologist who spent nearly 2 1/2 hours learning about our son.  I have never felt that he is hyperactive because he can sit still and focus for hours at times.  This psychologist helped me to see that many of his behaviors are "sensory seeking" -- the way he tips his chair over repeatedly at school, has periods of non-stop movement at times, takes off running from me at a dead-sprint in crowds or parking lots for no apparent reason (so scary), dumps all of the toys and puzzle pieces into one maddening pile before he begins to play with one thing, and other behaviors that have perplexed me over the years.

We discontinued the ADHD medication that day and I was glad.

We started him on another medication.  It is hard to see my child suffering from other side effects (it is very sedating for the first few weeks) as his body adjusts, but I hope that we will eventually be led to the answers that will help him suffer less in his life than he has before we started down this path.

The psychologist believes it could be one or a combination of a number of things causing his quirky behavior, but one of the things on the list that matches with his "symptoms" is autism spectrum.  This is what I have been asking the school to test him for since the beginning of last school year.  After contacting a clinic to see about getting him tested (it costs between $1000 - $1400 just to start), I was again told what I had been told 15-months ago -- that the school district can and should be doing the test for free.

When I met with the principal to discuss this again, she apologized and said because she was new last year she feels like she misunderstood the process or my request and may have not followed through with the testing the way she should have.  She was very sorry -- and, it is all fine, as long as we can move forward from here.

Friday, we signed a form that means the school has 45 days to complete their assessments.  I hope it will lead to Isaac receiving the ADOS test for autism and autism spectrum.  In the meantime, we will continue to try medications and meet with the psychologist in Salt Lake.

I feel really thankful that we are getting the help we have been searching for.  If he had more severe behaviors (I am so thankful he does not), we obviously would have figured things out by now.  It is hard when you know something is off, but people make you feel like you are over-reacting to the situation or maybe you have just spoiled your child/been inconsistent/are a bad parent, etc.