Monday, September 14, 2015

How old is he?

Simplest question in the world for a parent! At first we count in months, than years but with quarters and halves. And eventually just years. Often we marvel at how fast time flies and wish they would stop growing up altogether.

For me however, as Cédric progresses in age and grows in size, this question is getting harder to answer, or at least harder for me. I struggle with the intent of the question, with how to answer it, and with which degree of detail I want to go into.

There tends to be sort of three scenarios:

- the person asking sees him or somehow already knows about his delays and autism, so that's easy, all they want to know is his chronological age.

- the person sees him and can tell he's big, but can also tell there might be something different about him. Here I wonder if they just want to know his age, if they are trying to determine whether he's just really big for his age which would explain his behaviour, or if there is something different going on and trying to ask what without being rude. Sometimes I give his age and let them conclude what they want, sometimes I tell them his age but specify he's on the spectrum. Sometimes I don't mind the subtext to the question, sometimes it annoys me...

- and the last might be the most taxing and hard for me. I start talking to people I don't know without Cédric being present and the conversation goes to kids. The question of age comes up and when I say his chronological age, people tend to comment on how fun that age is, all the things they can do at that age, the new developments and possibilities. And I have a choice to make. Do I nod along and move on to another topic or even another person to talk to? Or do I explain? This scenario is hard for two reasons. First it is sad almost every time to be reminded of all the things other kids his age do, like, learn, etc. that he doesn't. And second, it might be a quick note to the conversation but quite often it turns into a whole long conversation about autism and sometimes I don't feel like going into all the details, focusing my thoughts on all of that again. But I also feel that it helps awareness, so I feel somewhat compelled to share.

And if you're wondering what the answer to the question is, Cédric is 7 years old chronologically, but functions at around 1 to 2 years old developmentally according to the latest assessment, although it's not uniform. He might do some things like a 1 year old and others more like a 3 year old would.So as you see, simple question but complicated answer!

Wednesday, May 27, 2015

Sponge Cédric sensitive pants!

One of the stigmas that has long been associated with autism is that children on the spectrum don't experience empathy and don't have feelings. For a long time, they were thought of as cold and distant.
This prejudice is one of the reasons doctor maintained for a long time that Cédric was not autistic because he was "too social".
Recently, one of my friends posted an article on Facebook which presented the theory that not only do autistic children have feelings (which is obvious in Cedric's case) but that they might even feel more than neuro-typical people. According to the article, it might be the reason some of them refuse contact and shy away for other people's presence: they have such a sense of empathy and feel to such a degree that it is too intense.
Just like everything else in autism it seems, this trait can be different from one individual to the next. But personally, while reading the article, all that came to mind was that this was obvious in Cedric's case.

I call Cédric my sponge! He captures the feeling of others around him and though he doesn't respond to them as we would expect, they affect him tremendously. He doesn't console us when we cry or are frustrated, but the emotional climate of his environment dictates his mood. He absorbs what surround him. For Cédric, moods are contagious. So if the people around him are frustrated, stressed, anxious, or impatient, Cédric gets frustrated and angry easily. If on the other hand whoever is taking care if him is calm, happy and patient, Cédric stays in a good mood.

I've known this for a long time. When he was a baby, Cédric only cried when me was in pain or if another child was crying. But it was confirmed to me again during our vacation in Florida. I realized one of the reasons Cédric feels so good in Disney World is that everybody feels good in Disney World. The crowd doesn't bother him as long as the individuals who compose it are happy. In Disney World, everyone is happy, relaxed, on vacation! He only got frustrated at meal times, when he was hungry, but also when everyone around us was hungry and fighting to find a seat in the restaurants. At the water park, he is totally relaxed in the lazy river where everyone is floating around and he is happy in the small, fairly calm pool where young children are playing. We tried the wave pool, however, and even though he loved the waves and jumping with his Dad, he got upset and frustrated for no apparent reason to us... until I realized that there were many people around us and all loud and overexcited. The intensity of the emotional mood was too high and Cédric wouldn't deal with it.

The problem of a sponge is that it needs wringing. When Cédric is doing well, he reacts to our moods but recovers quickly, but when he is tired, sick, hungry, too hot, etc., he loses his ability for self-wringing. We have to change the climate around him, often physically remove him from the place, and let the sponge drip slowly. At the water park, we had to leave the pool, give him a snack, go around the river, and play with him in the small pool before he really managed to get his good mood back,

It is therefore for us a daily exercise to stay as calm as possible to avoid entering a vicious circle. Good and bad moods are contagious for him, but for us too. Cedric's moods especially so as he is very demonstrative. So if we're tired, frustrated or anxious, Cédric feels it and has tantrums, which makes us more tired and frustrated and less able to patiently deal with his behaviours, and as he feels that we're angrier, he has more tantrums, etc., etc.!
It is also an important factor in our choice of activities, visits and maybe even more in who we choose to watch him. As much as possible, we select people who are positive but most importantly patient and calm. Someone too active and intense,  even if in a good mood, always gets overwhelming for him and ends up having problems with him (difficult behaviours, tantrums, crying, ...).

The simple fact of having realized all that helps me analyze the causes of his tantrums and to remain more calm. But our patience has limits and the rest of our daily life doesn't stop in order to help us, so we exercise (and do yoga for me) and go on vacation as often as possible to recharge our batteries!

Here's the little dude, all calm and happy in a teacup :D

Tuesday, January 27, 2015

Fist of monkey

A while ago, on a podcast called Edumacation, I heard a story about a group of Shaolin monks showing great interest in a baby. The baby had thrown his hand very quickly and grabbed his dad's glasses right off his face. The monks were amazed and said the baby had "fist of monkey", in other words what they considered to be an innate ability for Kung Fu where the body was almost bypassing thought and instinctive springing into action.

The story really resonated with me.

Ever since he was young, Cédric was clumsy and diagnosed with low muscle tone and delays in gross and fine motor skills. To this day, at 7, he doesn't hold utensils properly, he's only slowly learning to twist things, his pincer grasp is very weak, he can jump up but not forward.
On the other hand, ever since he was very young, he's been lightning fast. He can shoot a hand forward and grab what he wants faster than Lucky Luke's shadow, he can move every part of his body independently yet simultaneously in different directions to stop you controlling him, say when you're trying to take a blood sample or an X-ray, he can stop you from tickling or kissing him.

Having now learnt the basics of Gracie Jiu Jitsu, I realize it goes even further than that. The Gracies developed brazilian Jiu Jitsu for self-defence, by perfecting techniques that use gravity, balance and the body's strengths and weaknesses so that even a small person could get out of fights or attacks unhurt. As it turns out, when he tries to stop you holding him in place, or tickling him, Cédric uses those exact techniques. He knows to use a certain grip to push you away and a different one to pull. He knows to swim out his arms when you try to hold him. He knows to "shrimp out" by pushing his bum out and using his legs to get out af a hold. He knows to grab one weak finger, rather than your whole hand or arm, and pull it back when trying to make you let go of him or of something he wants. He knows to tuck his chin down so we can't hold his head. He knows to wait a little when he's really stuck and shoot out when he feels an opening. His body just does all those things entirely instinctively.

As I write this, I realize it sounds like we make a habit of fighting with him or holding him in place... Not the case. We noticed most of this in everyday situations, trying to play with him, trying to stop him taking something he shouldn't, trying to take a blood sample, etc.
During the Christmas holidays,we had an opportunity to experience this a bit more. We took him for hyperbaric oxygen treatments for which we have to stay in a small container for 90mn. He decided he didn't want to be there and had to be restrained quite a bit and I realized just how strong, fast, flexible, and efficient he is. He even went in once with the technician because I was sick. We're talking about a tall strong man who was trained in Gracie Jiu Jitsu while in the military. And even he came out amazed at Cedric's use of techniques and his ability to get out of anything.

Ever since I heard the "fist of monkey" story, I have therefore felt like Cédric has that defensive instinct. And ever since then I have wondered how come. To me, there are three possible explanations.
1. He just has a talent. Some people are good at music, or sports, or poetry, or drawing. No reason why he couldn't just be good at martial arts.
2. Because autism is at least a part of who Cédric is, I can't help but analyze things through that lense. I wonder if the way his brain functions is responsible for this in some way. Maybe having less complex thoughts allows for a more direct use of his body; less rationalization and more animal instinct. Or the opposite. Some people and reasearch suggest that the brain of autistic children is over developed, and we know that many of them deal with sensory input differently. So maybe Cédric just has a way more developed sense of his body and how it moves.
3. Hubby has also suggested the possible influence of epigenetics. This is a theory that even within one generation, what parents have learned and practiced can pass on to their offspring. As his dad has been practicing martial arts for years, it's possible that Cedric is genetically predisposed for them.

All I know is that if ever he develops the attention span and interest to sit in a class and learn a martial art, he will be a force to be reckoned with!

A small PS to add a digiscrap layout which shows my little ninja (I journaled in French about his ability to sneak up on us unheard and his defense skills):