All Change…In More Ways Than One!
I had planned a different, more upbeat post for today, but after taking my son to one of his therapies I am feeling rather peeved and a touch disillusioned to say the least. It was not so long ago that I was feeling full of hope for our sons future, after what seemed like a lifetime of trying to get answers as to why our son has always been ‘different’ than other boys his age.
A few months back Greg’s was diagnosed as having apraxia, a sensory disorder and with being on the autistic spectrum, this was after being fobbed off time and time again. I won’t bore you again, but if you would like to read about Greg’s diagnosis you can do so here: Finally, We Have An Official Diagnosis For Our Son.
We were promised the help we needed and suddenly things seemed to be happening, people were trying to help us and Greg’s; that was until we had took a three week break in August! He was having cognitive therapy and occupational therapy about once a week, which we are aware isn’t enough, but it was better than nothing. Me and my husband were also getting help, on how to help Greg’s once every couple of weeks. Again not really enough, but better than nothing.
After an evaluation we were told that Greg’s would get therapy to help with his swallowing, which he needs and we were told that would happen about once a month….Deep intake of breath…
I Am Now Starting To Feel Totally Disillusioned!
After the summer Gregs started back with his cognitive therapy on September 2nd. The therapist then made his next appointment for today, September 30th, which when I questioned the length of time gap between appointments was told to let him settle back at school. I also wasn’t too happy at the time at the length of his therapy session as she spent approximately twenty minutes with Greg’s on his own!
Today, September 30th, he had his cognitive therapy appointment and the next one she has scheduled for October 27th, after spending no more than half an hour with him today. There has also been no appointment made for his occupational therapy at all, so he hasn’t had that therapy for over two months! And I heard, although have not been officially told that the therapist that was supposed to be helping Greg’s with his swallowing is now leaving and is probably not going to be replaced!…Another deep intake of breath…
And There’s More….Mini Rant Coming On…
The medical center where Greg’s has his therapies has been in contact with Greg’s school as promised, to explain exactly why Greg’s is like he is. But one day last week Greg’s came home from school saying that his teacher wants to know where he intends to go after finishing school next year. Living on a Greek Island, children who want to further their education must go to the mainland, which is fine for most eighteen year olds…But not Greg’s. He wouldn’t cope. He manages in main steam school, but still needs constant reminding to eat, drink, wash, move and he rarely leaves the house unless he is going to school or we are walking the dogs.
In fact take me out of the picture and he probably would just sit in a chair holding tightly onto his phone that is playing music whilst set on mute…He likes to watch the time pass as the songs play…So what hope has he of coping living on his own? Especially after we have been told there is a possibility that he may not be able to do so safely.
When Greg’s was diagnosed with his disorders a few months back, we were told that it is going to take a long time, if ever, to teach him to be able to live a totally independent life. He can’t wash dishes for the life of him and has a fascination with watching the microwave plate turn, so puts food in the microwave for dangerously long lengths of time. When doing things for himself, like making a sandwich, he will always tell me that he is going to make it, show me the finished sandwich and then show me his empty plate when he’s finished eating. And every time I tell him there is no need to show me, but he just can’t stop doing it.
What His Therapist Did When I Told Her…
I mentioned that I didn’t think that Greg’s teacher didn’t fully understand what Greg’s or we are up against and no matter how much we would all love to see Greg’s fly the nest next September and head out into the big wide world, in reality we all know that isn’t going to happen. Throw Greg’s a curve ball and he doesn’t know what to do.
His therapist, spoke directly to Greg’s telling him that Patra isn’t far away ( an hour and a half by ferry and another hour by road) and that there is no reason why he can’t go there to study if he learns to plan his day!! That was when it dawned on me that she really didn’t have a clue and I left her office feeling speechless and totally disillusioned.
I must have shot her a look whilst trying not to grind my teeth too loudly as she looked at me, smiled weakly and told me that really Patra isn’t too far away in a voice that I imagine she uses when speaking to three year olds.
What Now?…
That is a really good question and not one that I have the answer to right now, but one thing I know for sure is that the therapists in the medical center are not helping him or us one bit and I am not sure if that’s down to cuts in their budget or down to the fact they are not properly trained to deal with people like Gregs.
I am really not sure what are options are, I know that when he was diagnosed he was written up for about four different therapies and as he was written up for them we should be able to get financial help from the government, if we take him to private therapists, the main problem being that the therapy he needs may not be available on the island.
He does have his two sessions per week of speech therapy paid for by the government and his therapist is doing a great job with him. In the few months she has been seeing Greg’s she has got Greg’s doing things he couldn’t do before.
For the moment, I must step back, take deep breaths and think about what our next step should be, as everything works out in the end.
I do feel better for that mini rant. Sometimes it’s all that is needed to to get things off our chest and looking on the bright side; tomorrow is a new day!
Copyright © 2014 Debbie Roberts
© 2014 – 2015, Debbie. All rights reserved.
Tagged In...
Aspergers Syndrome • autistic spectrum disorder • dyspraxia • Greg's and Us • sensory disorder
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