Functioning

I've never liked talking about functioning labels. High-functioning, low-functioning....who's to decide. It all seems so arbitrary and somehow, wrong.

Three times in the past week someone has mentioned this in relation to my son. The most recent was his neurologist. She noticed a marked improvment in his behaviour and "socialness" at his recent appointment. I remember, before the autism diagnosis, her wondering aloud about ADHD. As she finished her observations she said something along the lines of "that's wonderful he's doing so well, he must be high functioning."

Why must he be? He certainly wasn't a year ago. Can't children on the lower to middle parts of the spectrum make large improuvments without being considered "high functioning"? And when do they get that label anyway? When they're closer to "normal"? Is there a known line they pass in their development? What if they're in the lowest percentiles in some areas and higher in others?

It's so confusing and unnecessary. Patrick's not high or low functioning. He's Patrick. He's very verbal. He doesn't always understand input and we struggle sometimes to make him understand us. His output isn't always "appropriate". He has sensory issues. He's slowly improving socially. He shuts down sometimes for no reason. He's got some behaviour that is worrysome. He used to self injure. He wanders. He doesn't understand danger. He can't answer why but he's learning to ask why.

But what I've described is Patrick today. Patrick one year ago was very different. I'm sure Patrick one year from now will be very different.

I don't get it. What's the point? Does labelling children high functioning somehow make some people feel less "icky" around autism? Nobody has ever said, in my hearing anyway, "gee, he's having so much trouble, he must be low-functioning".

I don't know the answer. I don't know what category Patrick falls into nor do I care to be perfectly honest.

Kim over at http://emergiblog.com got me thinking about seizures. I don't think I've ever posted this whole story.

Patrick has epilepsy. We learned this about a year before the autism diagnosis. As a matter of fact, at the time we thought it might explain some of his issues. We really thought it explained his irregular sleeping patterns. We were partially right but that's neither here nor there. This story is about how we found out he was epileptic.

It was a beautiful spring day. We were all outside as we are more often than not. Mom, Dad, older brother and Patrick. Dad and I were walking down our long country laneway to put older brother on the school bus. Patrick was playing nicely in his sand box near the house. I kept looking in his direction to make sure he was still there, he was only 3 after all.

During one of these frequent checks I saw him fall to the ground. I said "hun, something's wrong with Patrick". He looks over and says (something he'll never forgive himself for) "no, he's fine, he's just playing on the ground". It made sense what he said. Patrick often drops to the ground for absolutely no reason. But mama's instinct was blaring in my brain. "No" I said, "something's wrong".

Dad sprinted over to find Patrick laying on the ground unconcious. I watched him pick up his stiff body, put him in the car, and drive away. We only spoke long enough to agree he should take him quickly to the emergency room. We're pretty far away from ambulance service (although the hospital made sure to tell us we should have called 911).

My son was dead. I was standing there in the middle of our laneway thinking my son was dead. I put older brother on the bus. Then I stood there wondering what to do. I had to get to my son's side even if he was gone. I had to be there. He needed his mama of that I was certain.

I hoped into my husband's car. It's a standard. I had never driven one before. Oh well, I figred I'd get myself to the neighbour's house a bit down the road and have her drive me. She wasn't home. Next neighbour. Not home. I'm starting to panick. Tears are streaming down my face.

So I drove. I drove a standard transmission car about 15 minutes (it took me 7) in to the small down closest to us. I prayed the whole way that Patrick would be alive when I got there. I also prayed for the one stoplight to be green...no way I could stop and start this car again. It was.

As I pull in to the ER parking lot I see the car dad drove in the middle, door left open, nobody around. I park, walk past it and in to the ER. I can hear Patrick's screams from the door. Oh, thank you God. Screaming is good.

The story really gets boring from here. He's fine. It was the first of many seizures before we could get him on the right medication. But all the other seizures I handled well since now I knew what they were and what to expect. No need to bring him to the hospital unless they didn't stop on their own.

We've had EEG, MRI and CT scans. He's well medicated now. He's actually coming up to two years seizure free which means if his EEG is normal (it wasn't before) then he might try coming off the meds.

A lot has happened since then. Autism being the biggest. But I will never in my whole life forget the moments when I thought he was dead. Perhaps that's why autism wasn't the "worse than cancer" disaster I hear people talk about. My son is alive. My son is healthy. Autism we can handle.

Look at me. Hey Patrick, right here. Look at my eyes.

Does it really make a difference? Is there a reason why he won't look in our eyes for more than a few seconds? Does it hurt him?

When we first found out Patrick was autistic we grabbed on to this one characteristic. If we could just get eye contact we'd be on our way. Everyone talks about how important it is.

Over the past year eye contact has become much less important for us. It just didn't feel right to force it. So we stopped. Completely. We worked on other areas of behaviour, speech, OT, fine motor skills, etc.

Result? When he wants to look at us he does. Sadly I can't remember the first time he initiated eye contact himself. But I do remember the feelings it illicited. He looked at me without prompting. It was more glorious than hearing "I love you" a hundred times.

Right now his eye contact is sporatic. He does it when he feels it's necessary. Even then it's often fleeting. Once he knows he has my attention he looks somewhere else.

I think at the beginning we clung to "normal". Well, seeming normal anyway. Fitting in. "Passing" as neurotypical. If he could just make eye contact he wouldn't be as "wierd". Then we realized that being able to look in my eyes would not make him less autistic. And over time we've realized we don't want him to be less of anything.

This is who he is. Perhaps he doesn't need eye contact to pay attention as other kids do. I remember being told "eyes on me" when I was in school. It seemed to work. But I'm thinking Patrick is capable of focusing on someone or something without looking at it. What a gift.

Found this in drafts...not sure if it was ever posted.

Look at me. Hey Patrick, right here. Look at my eyes.

Does it really make a difference? Is there a reason why he won't look in our eyes for more than a few seconds? Does it hurt him?

When we first found out Patrick was autistic we grabbed on to this one characteristic. If we could just get eye contact we'd be on our way. Everyone talks about how important it is.

Over the past year eye contact has become much less important for us. It just didn't feel right to force it. So we stopped. Completely. We worked on other areas of behaviour, speech, OT, fine motor skills, etc.

Result? When he wants to look at us he does. Sadly I can't remember the first time he initiated eye contact himself. But I do remember the feelings it illicited. He looked at me without prompting. It was more glorious than hearing "I love you" a hundred times.

Right now his eye contact is sporatic. He does it when he feels it's necessary. Even then it's often fleeting. Once he knows he has my attention he looks somewhere else.

I think at the beginning we clung to "normal". Well, seeming normal anyway. Fitting in. "Passing" as neurotypical. If he could just make eye contact he wouldn't be as "wierd". Then we realized that being able to look in my eyes would not make him less autistic. And over time we've realized we don't want him to be less of anything.

This is who he is. Perhaps he doesn't need eye contact to pay attention as other kids do. I remember being told "eyes on me" when I was in school. It seemed to work. But I'm thinking Patrick is capable of focusing on someone or something without looking at it. What a gift.

Birthday's and such

My little boy will be 5 soon. Five!!!!

I worry as he grows and gets bigger. He won't be "cute" anymore when he does things that are inappropriate. Tolerence and acceptance from other adults will lessen. School will no doubt get more difficult and not less. We expect more and more of him (admittedly) sometimes too much.

He's doing wonderfully though. If you'd asked me when he was 3 if I thought we'd be where we are today I would have answered with a resounding "Hell no!". He has come so far. He has worked so hard. He can't wait for his birthday and this year actually gets the concept in advance. I foresee a day full of grins in the near future for our happy boy. We're tailoring his party around his preferences and sensory issues this year. It is, after all, his special day.

Pics to come of his 3D Thomas the tank engine cake! Him wearing his Thomas sweater that's several sizes too small but still a must for birthdays. Oh, and this is year 3 with a Thomas theme. Ya think he might like thomas trains?