Thursday, February 19, 2009
wrung out
It is the day after the most terrible day I can remember after the last terrible day that had slightly faded from my memory.

It was a bad day.

Due to diligent control of the environment and our family schedule I can usually keep everything at a low level of stress for Alec. Yesterday wasn't one of those days. He has built up such a sleep deficit that it is now really affecting him, he fell asleep one day at school last week. He is having trouble going to sleep because he is afraid of having nightmares, he is scared of movies that 2 weeks ago he was fine with, shadows on the wall scare him and we have taken down all his posters and moved any shadow making things.

Yesterday he woke up agitated, he was snappy and uncooperative getting ready for school. He didn't verbalise his concerns until we were 1/2 way to school. He had left his Ben 10 watch in his desk at school, that meant he wouldn't be able to wear it and play before the doors opened and he had to start school. I told him we would talk to Mr Gaglia and see if he could wear it for a little while. That was no good and he quickly slipped into a full scale meltdown. I managed to get him to the classroom but he was lost to it, he was crying and talking really fast with lots of big gestures, he looked tortured. When the door was opened I had to half carry him in, I took him straight to the teacher and Helen his aide saw what was happening and headed right over. Alec was past even knowing what was going on, he had gone stiff, his whole body tensed, b now I was so distressed I just started crying, Nic took Alec and Helen took me. Nic found his Ben 10 watch and put it on him, he said once Alec realised he could wear it he could feel his body relax.

I always look back at these events and try to figure out where I could have stopped it from happening, what could I have done to make it better. You know what, nothing was going to stop this, this is what autism is sometimes. Most of it I can deal with but with these meltdowns I feel totally useless. I see terror, confusion, hurt and a look of being lost and I can do nothing and being powerless when it comes to helping my child is the most awful thing I have ever experienced.

He was fine though, he made it through the day and we went to his social skills class at the speech centre, I am still shattered, the tears are just under the surface. Alec needs more help, more therapy, more something but we are finding it hard, once early intervention is over unless you are in an autism school (which Alec isn't he is in mainstream school) you are pretty much alone. We will get there though, Alec and his brother Riley are the most important job I am ever going to have and I am nothing if not determined.

So today, the day after my very bad day I am going to kick back, do some scrapping and read a book. I need some down time.


Blogger Mette Thomas said...
I hear you loud and clear !!

My days with our 12 yr old are just getting harder and sometimes despite our best efforts things seem to start to unravel.

I have a 12 yr old that has intellectual disabilities, ADHD and is on the spectrum although not Autistic. The other week we spent some time at the paediatricians and the issue of sleep Josh doesn't sleep enough but really needs it.

We all talked and decided to put Josh on Melatonin which is the naturally occurring hormone you and i have in our body that helps you to sleep. As it is al already part of our make up there are very few side effects, just a thought in case you were interested as lack of sleep just provides fodder for a meltdown in our house.

By the way its expensive as it has to be made up by a compounding pharmacy and isn't on pbs but hey it works !!


Blogger Kell said...
I'm sure you are doing the best job you can Alli. It doesn't sound easy! I have enough trouble with a strong willed 8 yr old, so I can't even imagine what you must cope with. I hope you got your time out and got to do something enjoyable for you.

Blogger Lissy said...
oh Alli :(

Blogger Jen said...