Saturday, February 18, 2012

What If...and What Is

We've been giving a lot of thought lately to Ben's future. I don't mean the long-term dreams of most parents for their kids, such as dating, driving, college, and marriage; what is on our minds is elementary school, and then junior high, and Ben's ability to successfully navigate both. He is still doing well in a mainstream 3rd grade classroom, except for a few issues with spelling and handwriting, but as classes get harder and expectations get higher, we are trying to plan ahead to accommodate his needs.

Plan one was some therapeutic horseback riding lessons. He's been going to a place called "Courage Reins" for about three months now, and the program is impressive. With the help of volunteers (Ben's big sister Izzy is a volunteer) and staff who have training in working with special needs kids, Ben grooms his horse every week (brushes his horse down and picks the hooves), saddles him, and then leads him into the arena to ride. In the process he is learning how to follow instructions, develop gross and fine motor skills, build core body strength, and gain confidence. I'm including some pictures on this blog that I took during a lesson.

One day the teacher asked the kids to let go of the reins and stand in their stirrups while the "lead walkers" led the horses around the arena. She asked the kids if this was hard, and Ben called back, "It's a little bit scary AND a little bit fun!" That sounds about right.

Plan two was to get a solid battery of testing done that would give us a clear picture of Ben's intellectual, academic, social, and behavioral functioning. The intellectual/academic testing was very interesting. We discovered that Ben has a very high IQ, but also discovered that when it comes to academic performance, he performs anywhere from the nearly 100th percentile (that was in a task called "story recall" where he was told a series of short stories and then asked to repeat them back immediately, and then a couple hours later. Ben repeated them nearly verbatim two hours later exactly like they had been told to him originally. Very interesting stuff!), all the way down to the 1st percentile in handwriting (what he produces looks much like what appears on the inside walls of my purse when I leave the cap off a pen), and scores on various other tasks, everywhere in between. His spelling abilities were almost as poor as his handwriting. In the end he was diagnosed with a disability of written expression, and a mathematics disability (this one surprised me because he is still doing pretty well at math in school--at grade level, at least).

Then we managed to get into the Autism testing program at Brigham Young University. This was a huge deal, as the waiting list there is about a year long (we were fortunate that my husband in his profession as a psychologist was able to rely on some connections to move Ben up the list). The BYU testing was designed to see if and to what degree Ben met the criteria for a diagnosis of Autistic Disorder (as opposed to other similar disorders, such as 'PDD' [Pervasive Developmental Disorder] or Asperger's Disorder). A couple years ago Ben was diagnosed with Autistic Disorder by a child psychiatrist after just a relatively short interview. We've been using that diagnosis ever since, but now it was time to get serious. The BYU testing first involved a 3-hour interview with me, Chris, and the psychologist who asked us every possible thing there was to say about Ben's development and behavior. It was exhausting. We then took home and filled out a number of questionnaires and gave a couple to his school teacher to fill out as well. Then I brought Ben over to BYU where he was administered a test called the "ADOS"--the "gold standard" when it comes to determining whether or not a child has autism.

I stayed in the room while Ben was tested, and my heart nearly broke. For about 1/2 hour, the psychologist tried everything he could to get Ben to show some interest in what he (the psychologist) was talking about. For example, he asked Ben if he had any pets, and when Ben replied that we have a dog, the psychologist said, "Oh, I had a dog when I was little. He was black and white, but then one day he got lost..." The idea was that Ben might then respond with something like, "What was your dog's name?" or, "Did you find him when he got lost?" But Ben just sat at the table, rubbing his head and clearing his throat (a tic he has when he gets overwhelmed), and eventually he muttered, "Oh." When the psychologist gave him a pegboard with little cubes to fit over the pegs and instructed him to cover the whole board with the cubes (he only gave Ben enough to cover about half the board), Ben didn't ask for more pieces--he just rubbed his head and cleared his throat and waited until the psychologist finally offered to give him more pieces, to which Ben replied, "I guess." The test can take up to an hour, but Ben was done in less than half that because he just had no interest.

And then the waiting began. And I started to worry: What if Ben is diagnosed with Autism? And, what if he isn't? These were hard questions to wrestle with. On the one hand, if BYU diagnosed autism, then it was I mean, for a couple years we've believed that Ben has autism because the child psychiatrist said so after his brief interview, but that wasn't the result of any in-depth testing. There was always the thought in the back of our minds that maybe he was wrong; maybe we didn't have an autistic child after all...and there was some small hope in that possibility. On the other hand, what if BYU came back and said that everything we've believed about Ben was wrong, and that he isn't autistic after all? What happens to the IEP at school, and the services that our insurance pays for with an autism diagnosis? What if the problem is just that Ben is a hard kid, and we're not very good parents? The diagnosis of autism has given us an explanation for our son's challenges that we have clung to--without it, we'd be lost. I truly didn't know which result I wanted, and I nearly drove myself crazy thinking about it for one eternally long week.

Finally yesterday I sat down with the psychologist who had scored all the testing, and the results are in: Ben is a moderately functioning autistic child (I actually thought he was higher-functioning than the test results showed) who, because of his very high intellectual capacity, has great potential to get through school and...who knows from there. Will he ever be in a relationship? It's doubtful, because his interest in social interactions is very, very limited and he struggles a great deal to show empathy or emotional connection. Will he go to college? Perhaps, if we can accommodate his struggles with writing and communication.

But the psychologist said that we should live in a place of hopefulness. Ben has some strengths that many other children don't. He's smart, he's verbal, and he's just a dang cute kid (OK, I added the last one myself)! We move forward from here. The truth is, the world of "What If's..." is hostile and frightening. The world of "What Is" is something we can handle. And it's good to know what is.


  1. Wow Heather! Another amazing post. Thanks for the glimpse into your world. You are a great mom and you have some fantastic kids. I am glad that you have some more answers on Ben. I think one of the hardest things about being a parent is "not knowing"--whether it is an illness (virus or what not), different choices to make, etc... I hope this step for you guys proves very helpful!

  2. Amazing. Ben is very smart. I am glad you were able to get testing done. Now you Know and Now you can move on. You guys are great parents. Hang in there.

  3. Good to know some answers for sure. Thank-you for sharing. He really is dang cute!