Yesterday morning I had a parent-teacher conference with Jamie’s teacher and his speech therapist. They do conferences twice a year for the kindergartners so that parents have a sense of where their kids are as they head into first grade.
Academically Jamie is doing great. He’s got his letters and letter sounds, he knows his sight words, he’s starting to read; he knows more numbers than required, shapes, colors, patterns, etc.
Emotionally he’s not much better off than he was at the beginning of the year. It was a very rough transition in the fall. A new school, a new teacher, completely new classmates, a new schedule. All of this together was a lot for Jamie to take and there were meltdowns in school and bad behavior as a result.
We worked with him here at home. They worked with him at school. His teacher has had SO MUCH patience with him. And while things improved they’re not super great either. Enough that I am worried about how he’s going to adjust to all day school next year. I brought up the possibility of holding him back a year and was told that unless he was academically behind the district won’t do it. (Which is fine; I get it. Putting him with younger kids may not help him emotionally anyway and boredom would create its own set of issues.)
Finally, I asked if it was time to have him evaluated for Sensory Processing Disorder.
“I wouldn’t tell you no,” his speech therapist replied.
Jamie’s current list of problems are:
- He does not handle change well at all. A difference in schedule, a change in pick up routine can (but not always) cause frustration, anger, and crying on his part. The problem being that small changes are occurring all the time at school and no one has time for Jamie to have a meltdown over them.
- When he gets frustrated he shuts down. He squeezes his eyes shut tight, balls up his fists, and shakes to show his anger. Sometimes he pounds on the desk. This can happen because he’s been asked to do something and it’s not EXACTLY how he wants.
- He is exceedingly particular about things, almost to the point of OCD. He wants to do things a specific way – HIS way – and in a specific order – HIS order – and deviation from that bothers him a great deal. If he makes a mistake he often insists on starting over at the very beginning instead of just fixing the error and moving on.
- He has certain sensory affiliations. The one that pops up most often is his obsession with what he calls “smooth tags.” Basically, the clothing tags that are made from double sided ribbon are his *thing.* I’ve seen him carry around a shirt just so that he can touch the tag all the time. I’ve gone so far as to purchase double sided ribbon and pin some to a shirt for him so he wouldn’t go digging in his pants at school to look for a tag.
- He has refused eye contact with his teachers. He does this either by turning his back entirely on them, pulling his shirt over his face, or looking down at the floor. Now, I know that this is a classic autism behavior but I personally think that it is something different for Jamie. I think he gets overwhelmed and begins to shut down and that is what brings about the loss of eye contact. He doesn’t know WHAT to do or he’s afraid that he’s going to get an answer wrong and he just shuts up and shuts down. If I look at him right in the eyes, he holds eye contact with no problem at all. He’s also affectionate with us, particularly me, and seeks us out for affection. So, I think his issue relates to an over abundance of emotion rather than an inability to understand emotion.
- And last, but always present, are his speech issues. These ARE getting better and they’re doing so by leaps and bounds but having speech problems is not unusual with SPD.
I had to hold back tears as I walked out of school. I got in my car and cried as I called Scot to tell him. My head knows that intervention is a good thing. Diagnosis and a label means we can add interventions for him to his IEP. Occupational Therapy can give him coping mechanisms. My head knows that this is honestly no different than getting him evaluated for speech therapy.
My heart, on the other hand, hurts. How much more does that poor child have to go through? How many things is he going to have to have to deal with in a lifelong way? Why can’t something be easy for him, just this once?
And underneath all of that, buried deep down but flavoring everything, is that nugget of guilt. What did I do when I was pregnant that caused this? Was it how stressful that pregnancy was? Or did I do him harm by walking away from him when he was screaming as an infant and all I wanted to do was shake him? Did making him cry it out so young scar him psychologically? Did high doses of reflux meds cause something weird to happen in his brain development?
I’ll never have answers to any of those questions and my logical side knows that answers aren’t necessary. They won’t change anything about where we are and what we are going to face going forward. Dwelling on all of that doesn’t serve him or his needs; I have to put it aside.
So, I’ve started the processes of getting him an appointment to be evaluated. So far I’ve called three different numbers trying to get to the right office at the right Children’s location. I’m waiting on a call back from call number three. We have the summer to figure this out and hopefully by the fall we’ll have some answers and some strategies that we can incorporate into his IEP at our beginning of the year meeting.
In the meantime, Scot said something yesterday that was so very true. He said, “He’s still the same kid we sent to school this morning. He’s still the same one we love, we just might have better ways of helping him soon.”
Indeed. Jamie is still Jamie and I love that kid so very much.