Autism

I have written and rewritten this post in my mind for quite some time, but have not had the opportunity to put it to paper until now. I want all of you to know what has been happening on our end, and this is the easiest way to spread the word.

About the time of Enrique's 2nd birthday, Jose and I started to notice that he didn't seem to be developing his language as quickly as his peers. At that time, we had him evaluated by his primary care doctor, who made a referral for us to a local center here that does comprehensive evals for this type of condition. When we first started noticing this delay, we thought perhaps it was related to a whole host of changes he had in a short amount of time. Just a few months before, we had moved from Va to KY, he had left all of his daycare friends, Jose started a new job. A little over a month after his 2nd b-day, we were blessed with his baby brother's arrival. A few months after that, I started a new job here. Needless to say, that is a lot of change for someone so young. So, we thought perhaps that was why he wasn't making the progress that other children his age were. And so we waited for our turn for the evaluation and watched for signs of progress. Since the waiting list for the Weiskopf center was a year long, we decided to have him evaluated by the University of Louisville Speech pathology dept to see if we could at least get him started with some speech therapy. He has been in speech therapy for a year with them, and although he has made a lot of progress, he is still about a year behind in his language development.

As you can imagine, Jose and I are not very patient waiters when it comes to our children. We both started reading stuff online about autism, books, all kinds of treatments, both radical and generally accepted. I started Enrique on a multivitamin, extra doses of b6 with magnesium (which is supposed to help alertness) and fish oil (which is supposed to help with language--and has been quite a struggle to give! I have to hide it in his drinks, and even sometimes, he catches me :-) We read what we could find about the gluten-free casein free diet, and even bought some things to give it a try. Unfortunately, since bread and cheese are two of Enrique's staples, our trial didn't last very long. Has anyone tasted casein free cheese? it is QUITE disgusting. The gluten free part wasn't so bad, actually...he gobbled the pancakes I made with the mix quite happily.

In November, shortly after Thanksgiving, he started preschool through the school system. The evaluation they did lasted approx an hour and a half, and it was jammed full of "stack these blocks." and " sort these blocks" "put the bear to bed." etc. It was performed by a speech pathologist, an early childhood specialist, and an occupational therapist. The eval itself was enough to make anyone's head spin--they went so quickly from one task to another that I could barely keep up. Not surprisingly, he did really well at sorting and matching, not so hot on the language tests. They diagnosed him as developmental delay NOS (I love NOS, it's such a hodgepodge term for we just don't really know) . As part of his therapies, he got speech (mostly in a group) and resource time, which was time that a childhood specialist would come and help him with the social stuff. We started to see improvements in him, and he really did love school; but it always seemed as if we could be doing more.

On June 3rd, a few months shy of a year since the initial referral had been made, we finally had our evaluation through the Weiskopf center. This one was almost an all day affair (from 8-2 with a break for lunch)--the marathon of evals for both Enrique and his parents. He was evaluated by a developmental pediatrician, a child psychologist, a speech pathologist, and an occupational therapist. Enrique was pretty closed off with the first evaluation; but as the day went on, he seemed to warm up a bit. The speech evaluation was the last one before our final session in which they would give us the diagnosis. It is so frustrating to have your child not answer with the correct answer when shown a card and you know that they know what is on the card. Enrique cooperated with a bit of the exam, but he seemed to get tired and distracted easily. After each individual evaluation, the group of clinicians would meet to give their impressions to each other. I have to admit that I peeked at the notes the speech pathologist had written from their session (it was in plain sight--i didn't have to be sneaky!) "OCD, social anxiety, not autism." I wasn't quite sure what to think of that, but I definitely liked the not autism part...

At our wrap up session, everyone seemed to brace him/herself for the news--"He has shown a lot of positive signs...he has warmed up even now and is checking in with the evaluators...he has a strong attachment to you, his parents..." and although they said they felt he was perhaps a bit outside of the spectrum, they gave him the official diagnosis of pervasive developmental disorder, NOS (see, here it is again) or what is sometimes called "atypical autism." I'm not sure what they thought we were going to say--Jose and I looked at each other and we weren't surprised. We had read enough to understand that he is quite behind in language and he is very awkward around unfamiliar people, especially his peer group. He has never been the kid who seeks another in play, and sometimes, didn't even seem to notice the other kids around him. So, hearing this wasn't a surprise. Now, armed with a diagnosis, our only question was: "what do we do now?"

As I write this, we are trying to sort out what we are going to do for this next academic year. I have placed calls to several special preschools serving autistic children at all levels and am waiting to hear back. I am also discussing our options with the public school system. He is continuing private speech therapy at the university. He has also been referred for a special group speech/play therapy for children with autism spectrum disorders that we hope will start in the fall. We are slowly maneuvering through websites that list resources and support groups.
We are trying to learn as much as we can so that we can provide Enrique with the best resources possible.


This summer, we have seen some really wonderful improvements in him. He and Moises have started interacting a lot more--they wrestle, sing together, and Enrique will hold Moises' hand when they walk down the street. He usually calls him "my baby" but has occasionally called him "Moises." He has started asking questions, like "why did you do that?" and "where did it go?" which he never did before. large crowds still terrify him, but we have seen him warm up to new faces on the second or third time he sees them. He makes excellent eye contact with us (although is sometimes poor with others) and has a smile that can light up a room. His clinicians have gone as far as to say that with intensive therapies, he may not carry a diagnosis of autism by the time he's ready for school. He will likely always have traits of OCD and social anxiety, he will likely always be a bit of a "quirky" kid, but he's our quirky kid and we love him just as he is.

So, how are we doing? Right now, we are well--armed with a diagnosis, we are in action mode. A year ago if he had been diagnosed with autism, I probably would have lost it. I realize I had a very narrow understanding of what autism is--my only experience with it was that of a family friend's son, who had severe autism at a time when nobody really knew what it was or how to treat it. I remember having to deadbolt the doors when he would come over because if not, he would run out into the street. i remember babysitting for him on several nights and having him kick, scream, bite, and otherwise hurt me because his sleep wake cycle was all messed up and he wanted to watch a movie while I wanted to sleep. So, whenever I thought autism, I thought of him.


I've had plenty of tears along the way. When we received the results of his testing through the school system and his scores were in the severe category, I cried. When we had to sign the papers of the federal disabilities act, I cried. My baby has a disability!!! certainly not what I had imagined for him. Sometimes, I still cry--especially if I am around other children his age and I see how much they talk to their parents. I long for him to tell me how his day was and what he did and what he ate and who he played with. i would even settle for a simple "fine" as a response to "how was your day?"

But...

I have never been one to dwell on whatifs or to wallow in pity. So, I focus on the progress that he has made. I stay optimistic because those who care for him around us are optimistic. I know that he loves me and I know that he's happy because he shows me, even if he can't really tell me, yet.

So,why do I write this? Because we can't do this alone. One thing I don't want is pity--we have no time for pity parties. What i would like is support, compassion, understanding, and prayers--lots of 'em. I value each of you as a friend/family member and I think it's important that you know what is going on. I will not let autism define who Enrique is or who we are as a family. Enrique is not autistic...he is a funny guy with a gorgeous smile who loves cars, dinosaurs, Finding Nemo, and has autism.