My journey to the other side of the table, part 2

You can read Part 1 by clicking here.

After the OT eval in April of this year, I decided to see Trevin's pediatrician and get a second opinion. I truly wanted to know if there was another reason he might be so cautious or even off balance - maybe his ears, maybe vision problems, maybe just personality, for goodness sake!

Everything checked out fine, but our pediatrician sent us to a different physical therapist who could give us some more, or at least different, insight on Trevin's development. That PT found that Trevin had a clonus in his ankles. This was likely the cause of his balance issues, delay in running and jumping, and his caution in changing surfaces while walking. Her feeling was that continuing PT would be helpful in building his strength and confidence and that OT was probably not truly necessary, but if it was offered, there was no harm in taking him. It would, in fact, probably be a beneficial experience for him. She also mentioned that our pediatrician might be referring Trevin to a neurologist because of the clonus, but not to worry, because it was really just something that some kids work through. He may have difficulty mastering running and jumping, but he will master those things, eventually. I left that appointment glad to have something concrete to think about.

The next step in our journey was, indeed, a trip to see the pediatric neurologist. This happened just two weeks ago and is the main reason I felt the need to get this all off my chest. The appointment really brought culmination to everything that has happened in the last 15 months with Trevin's therapy and led me to some pretty powerful revelations. It was not a fun appointment and was one that left me feeling defeated, frustrated and a little worried.

First, let me tell you that Trevin is a little timid. He has become more friendly over the last few months, but generally, he needs to know you for a little while before he becomes very comfortable and, often times, very cooperative. This makes many of the evaluations we have gone to very frustrating and I feel like that parent at school who tells the teacher that her child "really does know all of his letters, he's just not doing it right now." Then the teacher thinks "okay, maybe, but I need to see it..."

At the appointment, Trevin was asked to do several things. Some of which he did, some of which he didn't. Some of which I thought, he can so totally do that, why isn't he cooperating?! and others, okay, seriously, a two-year-old should be able to do that? And others still, oh, yep, he should be doing that...

After all was said and done, the neurologist recommended an MRI. I was really hoping he wouldn't. He explained that he wanted to do an MRI to rule out anything. He said that he suspected the MRI would come back normal and if that was the case, he would do an MRI of the spine, then, if that was normal, he would move on to blood work.

At this point, I was sort of confused and I had two main questions: what are you trying to find? and what are you going to do with what you find? When I asked these of him, he gave me a vague response, basically saying that he would be trying to find any abnormality in the brain that would be causing neurons to travel incorrectly. That was basically all he said. When I asked what this meant for Trevin's future, he said that the brain tends to just work around the clonus, whatever that really means.

Now back to the MRI - I was not really a huge fan of the idea. I don't like the thought of my little guy being sedated and exposed to the radiation (though I know they'll probably still need to sedate him for such a procedure in the future). And based on the appointment and Trevin's cooperation or lack thereof, I wasn't 100% convinced that he absolutely needed it. So I asked what the benefit was of doing the MRI now as opposed to later. I was comforted by the neurologist's answer when he said that we did not need to do the MRI now and that he was completely comfortable waiting and re-evaluating in six months. He did say that if Trevin stopped improving in his motor skills, I needed to contact him. We agreed to that and Trevin and I headed home.

I felt drained, confused, and defeated on the way home. Why hadn't the neurologist given me more complete answers to my questions? What was he not telling me and why? As uneasy as I felt, though, I had a revelation. This entire situation has been a God thing. I was so resistant to physical therapy when Trevin qualified 15 months ago. I did not think he needed it then, and truthfully, I still don't think he needed it then. But he qualified anyway. Had he not qualified, we may be sitting here, wondering why he's not running as fast as his peers, or jumping yet. He may have gotten to kindergarten before these problems became a real issue, then it would be a much bigger headache to qualify him for services and get him the help he needs. In retrospect, I'm really thankful for how it all worked out. Our God takes care of us.

When I got home after the appointment, I called my mom - my go-to medical professional and my voice of reason when I'm freaking out about this stuff. (I love her!) She was able to explain that doctors are very careful about how much information they give you because they don't want parents to worry unnecessarily, especially about things that don't completely understand. She also explained that they would basically be looking at whether Trevin's condition (mainly, his clonus) was congenital (born with it), degenerative (gets worse over time), and/or chromosomal (could he pass it on to his children). At this point, the MRI may be good in giving me piece of mind (since I'm watching him daily for improvements or any weird motor difficulties), but it also might not show anything. Waiting for six months seems like a good move, especially because it will give Trevin time to mature and at his next visit, he's more likely to be more cooperative.

Now Trevin is enjoying PT and just started OT, which, can I just say, looks like so much fun! I'm happy that he gets to enjoy that each week. I still struggle with the idea of Trevin having "special needs." It's hard, having been a kindergarten teacher, to know the "stigma" that comes with students who get extra services or special therapy. It's not that teachers are unhappy to work with those students at all, but there is an extra awareness of these students before the teacher even meets them. These kids are split up evenly among classrooms so that one teacher doesn't get all the special ed students. They are sort of the wild card kids and you don't know how much extra work they will be. I don't want Trevin to be in that situation. Of course, if he was, I know he'd be a pleasant surprise to his teacher, but still. And will he be able to enjoy sports? It's hard not knowing if Trevin will grow out of all of this or if it will be a struggle for him for years to come.

When I look at Trevin, I see a boy who is incredibly smart. He knows his ABC's. Really, he does. And just yesterday he read a book to me (remembering the words from when I read it, but for a two year old, I count that as reading!!). He has an amazing memory and the ability to connect ideas together that I wouldn't expect a two year old to have. And lately, Trevin's been running like a madman. He's becoming more confident, taking risks, definitely improving. Hooray for that! He brings me so much joy just watching him and seeing how his mind works. He is loving and kind. He is just, well, amazing. I'm one blessed mom.

And I realize that there are worse things to be going through. My child does not have cancer, he is not disabled, or have another serious condition. I am fully aware that many parents have to suffer through things like that and I'm definitely thankful that that is not my cross to bear.

But this is my struggle.