Alphabet Soup

Well today was the "review of findings" for all the testing that Thomas went through last week. (He was being tested for Autism Spectrum Disorder.) It turns out that he is a mystery wrapped in an enigma. The doctor even presented Thomas' case to the diagnostic board at the autism clinic because he falls into an unusual diagnostic category. He falls under "has ASD and doesn't have ASD" so he shows some strong characteristics, but he shows enough non-ASD characteristics that they cancel each other out. It's very confusing. Thomas will need to be reevaluated in 12 months.

All of this might have left us right where we were, but it hasn't. Thomas did indeed have his alphabet soup added to. Not only does my sweet kid have SPD, but today we added ADHD and Anxiety Disorder NOS. (not otherwise specified) 

The part of this that is so reassuring is that the doctor we've been working with has been so great! He is knowledgable, helpful, fantastic with Thomas, and amazingly receptive to anything My husband or I have to say. Included in the 30 page report on all the evaluation results is a road map of where we go from here, suggestions for treatment, suggestions for Thomas' IEP and specific ideas on how to help Thomas meet his treatment goals both in school and at home. He has even offered to attend Thomas' IEP meeting if needed.

The first step will be enrolling Thomas in a social skills class at the ASD clinic since besides attention span, social skills is where he struggles the most. Because his vocabulary skills are so advanced, he will be put into a social skills class with slightly older kids. I think this will be great. 

We will also be discussing therapy for Thomas to help him deal with his anxiety problems, and possible medications if needed for the ADHD (though we plan on trying behavior modification first.) 

Also, there is another possible round of testing to go through, but we are waiting to hear about that.

All in all, I think Josh and I are comfortable with the information that we have, and the help that Thomas will receive because of it. We find ourselves back at the beginning in terms of new diagnoses, but one look at my kiddo reminded me that he is the same boy, no matter what his alphabet soup says.

Evals are done, now we wait

Like the title says, the evaluations are done and now we wait. There were two appointments, one for cognitive testing and one for diagnostic testing. There was a ton of paperwork: forms, questionnaires, and observations. And now we wait. The doctor still has a few phone calls to make (to Thomas' school, and to his OT) and has to tally scores, and write the report, but we should have some answer next Thursday.

Here's where I admit that I have no idea which way I want this to go. On one hand, and ASD diagnosis would open a ton of doors for help at school, and therapies that we hadn't thought of. On the other, it would mean that our son has Autism.

Now, don't get me wrong. An ASD diagnosis isn't the end of the world. If  Thomas qualifies for diagnosis, he is very high functioning, and a diagnosis doesn't change who our son is. But it's still scary.

I'm equally scared that he doesn't qualify for a diagnosis, and we will be back where we were last month, with our son struggling more than ever and we still have no answers. No additional help.

At the diagnosis evaluation today the doctor tried to explain a few of his preliminary findings, and I literally only heard about every third word. Well, that's how many I understood anyway. It's not that he was using a lot of big words that I don't know or anything like that, it was that my brain had shut down because of panic. Will he, won't he? Does he, doesn't he? I heard "Thomas is extremely bright, no Thomas is exceptionally bright." When I was asked if I though that Thomas had trouble making friends because he didn't understand the social cues of the other kids, or was it more that he didn't have the attention span to wait around to get answers to questions, etc, my answer was "yes." Both are accurate. But every question I answered, I had the thought in the back of my mind "don't screw this up...you want/don't want this diagnosis." it's no wonder that the past two days Thomas and I are both mentally exhausted!

The next week is going to be very, very long as we wait for our review of findings appointment. In the meantime, I am trying to think of questions, or additional observations to share with the doctor. I love that he encouraged me and Josh to email him over the next few days with additional comments and/or questions. It will give me a chance to calm my brain, and think clearly about any important information I left out.

home again, jiggity jig.

Thomas and I just returned from a weekend getaway, just the two of us. We went to visit both sets of grandparents, and it was wonderful... Mostly.

I am 9.5 weeks post op from a major surgery, so I am not back to my full energy level, and still feel some pain if I overdo it. The pain wasn't a problem, but holy cow, I forget just how much energy it takes to solo parent Thomas. I must remember to bring scotch and flowers to my husband after my next momcation!

Thomas did pretty well actually. His stimming behaviors picked up a lot during our visit, and by this morning his impulse control was pretty shot. His verbal stimming (a quiet click at the back of his throat)  returned the moment we walked into his grandparents house, and I think it was mostly a self soothing technique. He was pretty unsure of the dogs when he walked in and they were barking, but he quickly warmed up to them. The clicking continued all through the visit, and when I asked him about it he just told me that it felt nice.

He did fairly well with looking at people, momentarily, when talking to them, but he did avoid eye contact. He is becoming really good at faking it. I'm not sure if that's a good thing or a bad thing.

Thomas blew his grandpa away while they were playing a puzzle game together. Thomas is an excellent problem solver, and so does really well at those types of games. He reached Master level before he really needed much help at all.

We then spent 1/2 a day at OMSI with my parents. It was wonderful to watch Thomas experiment with things there, though he was very impulsive, and didn't spend more than 20-30 seconds per exhibit, save for a select few. The Mythbusters exhibit was his favorite, and it's where he spent most of his time.

All in all, I think it was a great trip. I'm so glad that he and I got to spend some one on one time together. I look forward to our next adventure over Spring Break... Maybe we'll try hiking again.

First Meeting with the Autism Center

Today was our first meeting with the Autism Center that will be doing Thomas' ASD evaluation. The meeting was for Josh and myself to meet the doctor, go over our questionnaires, and discuss out main concerns. The doctor was so warm and receptive, and we felt really comfortable with him, and with our decision to go with that center.

The next part of the evaluation starts next Wednesday. Thomas will have two 1-hour appointments over two days, one for cognitive evaluation, and the second for diagnostic evaluation. After those are done, Josh and I will meet with the doctor again to go over the results. A diagnosis for Thomas will be contingent on at least one other set of testing that we will have done elsewhere, but we will be heading in some direction within the next couple of weeks.

It is both an exciting and scary time in our home right now. Adding to Thomas' alphabet soup wasn't something I wanted to do, but in order to get the help he needs we have to have the correct diagnosis. I hate the idea that he will be labelled for the rest of his childhood, at least, but it is necessary.

Scouring the Interwebs

This morning has been full of me preparing to really buckle down with this whole "writing a blog" thing. I've been wanting to do it for over a year, and I have, sporadically. I think I finally have the time and ambition to realize that goal.

So, I have spent my morning looking at all the blogging conferences happening this year, reading other blogs, looking at styles and ways women have gone before me have done all this. What I'm seeing is both daunting and exciting.

Much like in my parenting, I have so many doubts about my ability to write well. Add to that my chosen subject, my special needs child, and I am very nervous. From my previous entries you know that Thomas (T) has SPD and we are now seeking an Autism diagnosis. Much like the journey to parenting him well, writing this blog well is scary, and at the same time exciting, and satisfying. It is definitely a labor of love, and one that I am so excited to embrace as I have being the best mom I can to my special needs son.

There is going to be a whole lot of stumbles, lots of trying and failing, and hopefully some successes along the way.

I suppose I am starting a new journey in more ways than one. A new journey to better help my son. A new journey to educate my friends, family and a few strangers about Thomas' life. Maybe the most exciting journey of all, the one where I do something for me. Where I write about all of these things instead of keeping them bottled up.

Wish us luck!

It's time.

We've made a pretty big decision as a family. We decided that it's time to have T evaluated for ASD (Autism Spectrum Disorder) and if we're really honest, it's likely past due. T is six and has been in OT since 3/2010 for his Sensory Integration issues. As he gets older, these issues have changed a lot, but show no signs of going away anytime soon. On the contrary, some of his sensory issues have actually gotten worse. To be fair, we have not been as good as we should be at home with his sensory diet, and we let him have too much screen time... I could go on blaming our parenting for days.

What has led us to seek further evaluations hasn't really been the sensory issues though. Being mainstreamed into kindergarten from a developmental (read: special needs) preschool, has shown us how different socially he is from his typical peers. We have been watching closely over the past several months, and what we are seeing is a child who doesn't know how to read people, and thus has extreme problems connecting with them.

T has been having problems with aggressive behaviors at school. When we heard about the hitting and shoving that he's been doing, we talked both to him and to the Behavior Intervention person at his school. It seems that he has been feeling threatened by the other children. He says that the looks on their faces scare him and that he's afraid that they are going to "attack him and send him to the ER" so he lashes out first. A preemptive strike, if you will. We've noticed this same reaction at home, and the fact that he only seems to be able to accurately read a happy facial expression. Everything else looks angry to him.

T doesn't seem to have any real friends at school, and the one or two kids that he does play with, often get intimidated by his aggressive behavior, or his very intense need to have them play only with him. So he is very often left feeling like he has no one at school. The Behavior Intervention person at his school points out that he plays alone most of the time, and T tells us that he has no friends. He says that every day when he walks into his classroom there is a chorus of "uh-ohs" from his classmates, and that he feels confused and sad.

Another thing that strikes us as being different from his peers is his inability to join in imaginative play of other children. He has a great imagination when he is playing alone, but he does not seem to be able to extend that to include imagination games that other kids have started. He will point out that what they are doing and/or saying makes no sense, and that it's just pretend...Or more accurately, "just fiction."
For example, he had a playdate with our neighbor and she was describing an altercation between her stuffed animals to see which one got to come on the playdate. They "wrestled" for the honor, and the winner won the right to come to the playdate. T just looked at her, and said, "you know that's impossible don't you? They are just stuffed animals and can't fight. You can make them roll around, but they didn't fight. That's fiction," It was a strange interaction. He was absolutely unable to suspend disbelief long enough to join in the fantasy. I've seen this behavior many, many times since then, and I'm guessing that if I had been paying more attention I would have noticed it before too.

There are several other reasons we believe that T is on the spectrum, though very high functioning. These are just a few of the things that have stood out to me in the past couple of months. We do not think that getting a diagnosis will do anything more than open up more tools to use to support T, mainly at school.

The evaluation process is daunting, but the result will be what it will be. The most unfortunate part is that we will not have finished the evaluation process before we have to redo T's IEP. I'm hoping that if he does receive a diagnosis that we can make changes to the IEP as necessary to support the new diagnosis, and get him the extra tools he needs for him to not merely squeak by at school, but to thrive there. So, for this reason, we jump into the unknown territory of the ASD evaluation process.