I can’t sleep.
Bear has been aggressive at school lately. He’s been different. We wonder if he too has Asperger’s because his personality seems to be off these days.
I haven’t been able to since 4am, it’s 6am now. I would love to blame it on the hub’s snoring, as is so often the case, but this time it is for an entirely different reason.
Today we bring Bear in for yet another assessment and another few forms for me to fill out. They are also going to be drawing blood. The only other time in his life where someone drew blood was for his PKU test after birth. So I am most definitely nervous about that. I come prepared for it with ipad and iphone in my purse. I have practiced with him, squeezing his arm tight where the elastic band will be placed, pinching his skin where the needle will go in to show him how quickly the pinch feeling disappears.
I’m terrified he is going to freak the F$%K OUT! I’ve seen him do that and it ain’t pretty.
But that’s actually not why I’m lying here awake while everybody else sleeps soundly. I’m anxious. I’m anxious that he actually will be diagnosed with Asperger’s and > I’m anxious that he might not be.
Bear’s assessment came about in a sort of sneaky way. I wanted to get him assessed, but I have very little patience so I was working to figure out how to make the process advance quicker. At the same time Bean was in a study at the same facility that was doing cognitive assessments on her…so I used my connection there to see if I could somehow get him seen. They said that they couldn’t just see him without putting him on the very long wait list, but that if I was willing to enrol him in one of their studies about how diet might affect aggression in children with AS – they could have him assessed right away, as they would need to know whether he really did have AS in order to have him be part of the study. I jumped at it. Especially as I have been having some issues with Bear + aggression these days as mentioned.
One of the things Bear has to do in the study is have blood drawn once at the beginning. But they told me that he would not get his blood drawn without knowing for certain that he had AS so that they wouldn’t put him under any undue stress. Today they are drawing blood.
And so I sit here in my bed, Tig laying between the hub and I (he snuck in some time in the wee hours of the morning while I was most definitely REM‘ing it and unable to notice him), and I am anxious. I sit, wondering what it means that he is having blood drawn. Did he show enough traits in the ADOS test that they feel confident that he has it? Or maybe they are just covering their bases and he won’t actually have blood drawn if by the end of the full assessment he is seen to not have AS. But they didn’t say “might have blood drawn”, they said “will have blood drawn”.
It’s almost too much to handle for my anxious brain. Will he, won’t he? Does he have it, does he not?
The answer will be with me in a few short hours. But my thought process doesn’t work in that logical way so that I may rest now before I get the answers. My brain doesn’t compute that swooshing those same questions over and over again in my mind won’t actually answer them. And so I am awake. Painfully aware of my own ridiculousness, and not at all able to stop it.
And what if I am told that he is not on the spectrum. What then?
Do I believe it and move on?
Many parents have pushed for second, even third diagnosis’s when they felt their child(ren) was wrongly assessed. Hell, even I was diagnosed multiple times in order to get the diagnosis that I finally have, and within those assessments I had Asperger’s, then I didn’t…then I did…then I didn’t (I don’t).
But then again…when do you just trust in the system? Or better yet – can you trust the system if you can get differing diagnoses?
When do you just let go and just move on? Let people be people and not need labels to figure out who you are.
What if there is something there and if I ignore it I am doing more damage than good?
Where is the line between labels helping and labels hindering?
GAH! All these questions and the truth lies in the space between personal beliefs and proffesional opinion.
Still, there is something going on with him. I don’t know what…but there is something.
By the end of the day I hope to have some answers to set my mind at ease. To breathe in a bit deeper and to chill the f’ out, whether he has Asperger’s Syndrome or not. I have to believe that this wasn’t all for naught, even if they find that he does not have ASD. That what I saw, that what I see, is real and it means something. Perhaps it isn’t ASD, perhaps it is something else. Maybe it is as simple as high anxiety, maybe it is not as simple.
But I know this little boy, maybe better than I know anybody. He and I share something special and when he loses it, when he melts down, I see how much he struggles to come back to me from the depths of his ‘more than just a tantrum’ state. I see behind the screams and screeches and hitting and kicking and the violence that he knows what he is doing, but he can’t stop. He really can’t. I know this because I see me. I have felt that way all too many times before, lost behind an angry and vicious and out of control self, watching the victim on the other side get hurt and wanting so badly to stop – yelling at myself from the inside “just stop!” – but not being able to.
I know this boy, this beautiful boy, with his long dark lashes and sweet smile. His serious and quiet nature and that unexpected deep chuckle we all work so hard to hear.
I need to know if he needs something more that I am not providing him with, maybe that I can’t provide him with.
Because he is worth it. Even if I am wrong about his diagnosis. He’s worth the effort.