Last week Stephen had chicken pox this meant a whole week off school.
Well this has been the happiest we have seen Stephen for a long time( the chicken pox never really bothered him), no morning fight to get ready, no sulking and locking himself away in the evening and he was even talking! which for stephen is a very rare thing, he used the most words we have ever heard him say. the only stressful moments were when he had to go out the door to walk to the school to collect his brother and sister.
During the week he showed us how much he can do when relaxed, he done painting pictures of trees, a small amount of writing and number work and best of all he showed us he can spell, he was using a cbeebies game where you made a picture and he typed his own name into the banner at the top, after he printed his one he made one for his little brother checking with mum that he had got all the right letters in Derek’s name.
it just goes to show how much school affects him we would not normally have any of this and his behaviour is unbearable, either grumpy and hiding or angry and violent.
To top things off this morning Stephen was back to school and the usual arguments happened again, would not stick to the routine and did not want to get dressed. This evening he had an after school gymnastics club which he enjoyed but after dinner he spent the evening on his computer and/or in front of the t.v .
Not long now until the summer break, then hopefully either special school or home educating in september, I cant keep seeing my boy shut down like that after just one day back!
Today was the review of Stephen’s statement of SEN, we did not really know what to expect. But after it was over i was a bit underwhelmed with what was discussed, Basically nothing is going to change apart from the fact his statement will be based on his autism instead of the speech delay, the school and specialist’s want the objectives e.t.c to stay the same as they are now. We had support from Autism Anglia through the meeting which was a great help and I would recommend to anyone to take someone to every meeting with a school for support and advice.
We shocked everyone at the meeting when we requested a change of school to Market Fields, our local special school which has specialized in autism. From our visit the provision looks soo much better than what he is receiving at the moment. If we can’t get a place in Market Fields for september we will be d-registering and homeschooling Stephen. I am of the opinion that Frinton primary school will not be able to cater for stephens needs no matter what the statement says they are supposed to do for him. I know my family don’t support the idea of homeschooling, but anything is better than what he is getting. He hates school.
There was a good bit this week in the local paper…….ME check it out http://www.clactonandfrintongazette.co.uk/news/clacton_frinton_news/10465577.Dad_s_run_for_five_year_old_Stephen/?ref=mmsp
Autism Awareness (Photo credit: Wikipedia)
Friday was D-day in our house, the house was full of different emotions, Jo and i were excited, happy and nervous all at once and Stephen was scared about seeing the doctor.
So the time came and we set off to the hospital, 2 very nervous looking parents and a little man who did not understand why he needed to see the doctor. As we sat in the waiting room Stephen relaxed while playing with a puzzle, We got called through and the doctor got straight to the point asking how we thought the ADOs assessment went and what we thought he would say…we were unsure so he put us out of our misery saying I am diagnosing Stephen with:
- classic autism spectrum disorder
- developmental learning delay
- communication delay
It was like a weight lifted off us, we had been saying for the last 2 years we thought it was ASD and now finally someone confirmed what we thought. It Feels strange being excited and happy that your child has been diagnosed with a disability, but that is how i felt friday night while at work. I don’t think everyone I work with understood why I felt this way-but i think this is partly due to living in a town where having disabilities is frowned upon, But i don’t care I will educate them my son may be different but he is still just a little boy trying to live his life happily.
Today I have the task of explaining to the older three children why there little brother is different and why he acts the way he does. I don’t think this will be an easy task as my oldest likes to think he is special and no one else is, whereas in fact the only thing different about him is how much sugar he consumes. I am not sure they all understand that we love them all the same it is just Stephen and Derek need more of our attention.
Next week we have the task of deciding what we are going to do with the schooling, as i see it we have 3 options;
- keep him where he is even though it makes him unhappy
- find another mainstream primary school as the local sen school is full
- home school him
This decision has been made more difficult by Stephen why he doesn’t like school
- does not like all the playing
- does not like people hitting each other
- does not like not being around daddy – this one hurt!
I have also witnessed other children at the school with no understanding of why he is the way he is they were saying’ if we stand still he can’t see us and will go away’.
This decision is so hard i think my head is going to explode….ARRRRRRGH