(I'm going to truncate this post, it is long)
I’ve told you a bit about what it feels like to have SID. What it feels like to live in a world where all the messages are clamouring for attention, all loudly, all at the same time. Where some of the messages actually cause you physical pain, they are so intense. Noise does that for me. It physically hurts. Sudden touch physically hurts. I think people think I make that up. I don’t. It really does hurt. Anyway, back to Adam.
When I first took Adam to OT, she said to me “look at his hands”. His hands are often away from his side, fingers splayed, palms facing outwards as if to ward off an attack. The OT said that it is because Adam is so sensory sensitive, that he is constantly waiting for the next sensory insult. His body is always hyper aware that something might accidentally brush him, or knock him over. So he is always hyper aware, hyper vigilant.
I am going to mix things around a little, because I have so much to say on this! From my own personal perspective and from his.
One of the biggest learnings through all of this has been understanding more where I come from. Why I am the way I am. When I grew up there was no label for this. You were just quirky. When I saw that photo of myself when I was Adam’s age, with my fingers splayed, I felt a little pang for the child I was.
The whole ‘waiting for the sensory insult’ thing makes so much sense to me now. I HATE being touched accidentally (even on purpose sometimes), I always have an extreme reaction. Now I know why. I go into overdrive on the fight/flight response and unfortunately I instinctively choose ‘fight’. Which is why I fractured Marko’s ribs (by accident!!) when he poked me in the side. The lashing out thing is instinctual.
Unfortunately, that is something Adam does as well. He lashes out when he is under ‘attack’. And while I understand why he is doing that, it is not something I want him to do. He can’t lash out at other kids or other adults, he needs to learn to modulate his response.
Something I haven’t done, is explain what happens when we go into sensory overload. I like to think of it like a temperature gauge or rev counter in a car. Sensory input is like putting your foot on the gas pedal of the car. You push the gas and the needle on the rev counter goes up. As the revs go up, you know to put your foot on the clutch (if you are not in America. If you are in America, the car does this for you *grin*) and change into a lower gear (i.e. you tune out some of the message, you process the other ones, you respond appropriately). The revs go down, the engine quiets down and hums along at an appropriate modulation. With Adam, the foot stays on the gas pedal. He can’t seem to take it off and gear down. He goes into the red. And his gas pedal is so sensitive. The slightest pressure sets it off. I am not talking about having a tantrum. Those are different. That is what ‘normal’ kids (like Kate) do. This is a freak out that borders on hysteria. It is a reaction based on fear, not on anger or frustration. One of the tricky things for mothers of SID kids is to distinguish between what is normal two year old tantrum behaviour, and what is SID overload stuff.
When I am around, I can see when or what will set him off, and I intervene. I jump in before he gets into the red, or I help him get out of the red if he has gone too far. I do this by taking him out of the situation, going to a quiet place and holding him tight (deep pressure). I talk softly to him, telling him it is ok, I am here. I hold him until his engine is able to idle on its own. Which is a surprising quick process by the way. I am always amazed at how quickly he is able to come back down again.
It all sounds good and comforting that I am able and willing to do that for him. The problem is that I am so super sensitive to his reaction that I hover. I jump in as soon as I see him hitting the red. I stop him from getting over hysterical. Which isn't good. He needs to learn what it feels like to hit the red and develop skills for coming down himself. To calm himself and respond appropriately. But it is so, so hard for me to see him stay in the red. Every fibre of my being screams out to save my child. But I am trying, I promise.
Going back to the routine / preparedness thing I discussed in my last post.
Sensory kids don’t do well with transitions. Whereas with a ‘normal’ kid you can sweep into the room and say ‘ok, leave those toys, we are going to the shop now’, a sensory kid needs warning and time to prepare himself for the change. Sensory kids do not like surprises. (I HATE SURPRISES, HATE!!). Changes and surprises cause all of us to have a little bit of a stress response, a mild spike in adrenalin or cortisol – the fight or flight response. But then our body quickly says ‘hey, I am not going to get eaten, it is just a new visitor / new activity / surprise’ and we automatically go back to ‘normal’. Sensory kids don’t. They spike and they find it difficult to come back down to normal.
So you prepare them as much as possible. If I know we are having people over to visit (even if it is close family or friends), then I prepare Adam. “Oma and Oupa are coming to visit!” and then he is totally cool with it. He looks forward to it and is excited. But if he is busy playing and Oma and Oupa suddenly appear, his initial reaction is not exactly welcoming.
Preparing Adam for what is to come has been one of the best pieces of advice I ever got. It helps so much. As an example, going to the doctor used to be a total nightmare. Adam would FREAK OUT. I had to hold him down. So I never used to tell him until the last minute. After leaning about the preparation thing, I started making up a story about the doctor. I would tell him way in advance we were going. Then I would tell them the story about what happens at the doctor. “The doctor looks in the one ear, then the other ear, then he listens to your tummy, then he….” By the time we get to the doctor Adam knows exactly what to expect and is totally cool with it.
Funny thing is if we go to the doctor now, Adam tells the doctor what to do. “Doctor, you sit here, I sit there. You must listen here, and look in here”. And he reminds him if he forgets something. Works like a charm.
The same goes with the routine. It is amazing how much Adam lives for the routine. He never questions nap time or bath time or anything like that, because they are part of the routine. Everything has a place and a time. There are inside clothes and outside clothes. There are things you do first and things you do second.
Unfortunately there is a downside to all this routine stuff. Adam doesn’t do well when you change the routine around. We usually have supper first, and then a bath. I once bathed them first because they were so muddy and he refused to eat supper afterwards. He wanted his bottle because that is what you do after the bath. Have the bottle. And macaroni cheese is what you have for supper. Nothing else. And that is clearly a problem.
So here is a request for advice from other SID moms and professionals – how far do we take the routine? Does he need the routine and predictability more than he needs to learn skills to deal with transitions and change? Is he still too young to take away the routine? I feel he needs it right now, but I also know I overcompensate because of my own ‘issues’. Maybe I should push him a little more. Force the transitions so that he learns skills to cope with change.
This need for order and predictability presents other problems too. In order for Adam to feel safe and secure in his world, he not only needs predictability, but he needs permanence and a clear sense of order. Which translates into objects as well. All kids struggle to share. Adam really battles to share things that are labeled his own.
If I buy 10 cups, all different colours, he will gladly share any one of them. Except for the one I said belonged to him. That is Adam’s cup. Mommy said it was Adam’s cup and so it’s Adam’s cup. No you can’t have it because it is Adam’s cup. How can you take the cub that belongs to Adam? It is Adam cup. If you take Adam’s cup, then nothing will make sense. Again, this is something that will improve with age and maturity, I have no doubt.
The educational psychologist I took him to asked me a very interesting question the other day. She asked me what he is like with his sister, and I said he is totally fine with her. I can see that he is relaxed. He has none of that splayed finger thing. And she said it is because he knows his sister, she is predictable. And even though she beats him up and shouts and pushes, he knows what to expect from her. He doesn’t need to be prepared for the unexpected sensory insult.
As he gets bigger, better and his ability to modulate his sensory input improves, things get much easier for him and for me. As I knew they would. There are times when it is worse (when he is tired, or when there has been a long time of sensory overload), but on the whole he had improved hugely. Everyone has remarked on it.
I am going to end this post at this point because tomorrow I want to tell you a bit more about the good (there is good!) and the not so good bits we are currently dealing with.