Not be able to speak is not the same as having nothing to say

Ryley is frustrated at the moment.
He is bored.
He is expressing his frustration by pushing the limits, and trying to get at his mum as much as possible.
Pretty typical for a 7 and 1/2 year old on school holidays I would think?!

The difference is, that he can't actually tell me what he is thinking in words. So he tells me in actions, stinky seizures, and his 'whiney' noises.
Ryley is absolutely fantastic at handing leading and putting my hand on what he wants, and he also occasionally uses his picture cards. He also understands a multitude of makaton signs and can even do some basic signs!
The best way to get Mum's attention?
Seizures.

For those that don't live with a child who has seizures, it is probably impossible to even begin to imagine how someone could use seizures to get attention. But believe me, it is most definately possible.

Ryley has myoclonic seizures. These are very brief jerking movements. Mostly it is his whole body that jerks, and they generally last for 2-5 seconds.
And he can bring them on himself.
How?
His seizures are connected to how he is feeling. Sometimes they are completely involuntary, and these ones are generally when he wakes up in the morning, and when he is going to sleep at night.
When he is tired, he seems to have more too. These tend to be involuntary as well. His brain and body are tired, so neurologically, his body just reacts by 'misfiring'.
But when he is annoyed, frustrated, feeling sick, scared, angry, worried, he can also start having some myoclonics. His body is very sensitive to how he is feeling, and that causes chemical changes in the brain, which in turn sets of a series of 'misfirings', thus, seizures.
Make sense?

So when Ryley wants to gets my attention because he is bored or cross because I am not doing what he wants, he will hold onto my pants, or sit at my feet and have seizures until I take notice and do what he wants.
It is his own way of having a little tantrum.

What do I do?
I talk to him. Ask him what he wants. Get him to show me. Most of the time he wants a book or to go outside or needs help with something. I try and not let it get to the point where he 'tantrums'. Which means he basically has my full attention all the time.
At the moment, he is not impressed because he has to share my attention with Braeden because it is school holidays. It is too cold to go outside much, and he misses his school routines and being so busy. The slower more relaxed pace of the holidays just doesn't suit him.

People often ask me how on earth I can understand Ryley when he doesn't talk.
It's easy most of the time.
I know him better than anyone else.
But sometimes, I don't know what he wants.
But just because he can't talk, doesn't mean he can't communicate in other ways. He is a very strong communicator, and as he gets older, we will work to find an alternate communication device that suits him.
But right now, he still has plenty to say.
Once people spend some time with him, they soon realise that they can have a 'conversation' with him.

So just because someone can't talk, doesn't mean they don't understand you and it doesn't mean they don't have anything to say.

Comments

  1. I totally agree! Ashlea's speech is still very limited, but she is pretty good at getting across what she wants!!!

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  2. I remember those words *just because someone can't talk, doesn't mean they don't understnad you and don't have anything to say* being something I so often had to get through to people when I was taking care of Mum (MND).

    It must be hard for you, the seizures. Hope he starts to feel a bit more settled when school goes back.

    ReplyDelete
  3. Great post, hopping by from the blog hop to say hello. Have a fun and safe weekend :)

    ReplyDelete
  4. Hoppin in to say hi, hope you had a wonderful weekend!

    ReplyDelete

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