Diagnosis-Day

Autism Awareness

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:

 

  1. classic autism spectrum disorder
  2. developmental learning delay
  3. 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;

  1. keep him where he is even though it makes him unhappy
  2. find another mainstream primary school as the local sen school is full
  3. 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

 

 

 

 

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What a week

Well it has not been the easiest of  weeks in our house this week.

We have not had too many issues with the school this week after the meeting with the complaints governor- it was quite productive and he could see my point of view on there the school is failing us. My favorite quote from the meeting was’ we don’t have any modern parents at Frinton primary school they are all dinosaurs’ referring to the fact that the other parents don’t believe there should be any special needs children in their school.

Stephen was showing how clever he is this week as our daughter was doing her SAT’s this week so every night she was on the computer doing revision, we walked in a couple of times to find her watching telly and stephen answering the maths revision questions for her…and he was getting them all right, even the ones she could not do!?!

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We had a disaster with our youngest on wednesday where he managed to slice his finger open. Which caused a lot of upset in the house, apart from Stephen who did not understand that his little brother was hurt, he even

thought the trip to the hospital was fun.  Fortunately the cut looked worse that it was and only required 2 paper stitches the huge bandage is only to stop him pulling the stitches off.

Over the weekend we struggled a little with Stephen as we were trying to prepare him for his sister being away on her year six trip, there were a lot of tears shed and tantrums – I not sure he understood the fact that she would be back at the end of the week. lol

 

 

And so a new weeks begins hopefully not as eventful as the last but you never know what is around the corner. Nikkita’s on her trip, Derek is on the mend, Leon and Jack are being themselves and Stephen is plodding along in his own way…..We will have a Diagnosis this friday(about time) YAY

 

 

 

The story so far

Before I start posting regularly I thought I’d fill everyone in on the story so far.

Stephen has been under the care of ‘community pediatrics’  and speech therapists since before he started Pre-school but is so far undiagnosed(suspected autism)

As he is non-verbal the pre-school taught him makaton so that he could communicate with them, us and others.

in September 2012 he started at a mainstream Primary school and the issues began….

  • No makaton training was provided to staff so they could communicate with him
  • there has been and still is no/ very little communication between the school and us
  • stephens is starting to act out(he has hit one LSA, and today thrown his chewie bangle at her)
  • He hates swimming but there is little support for him

these are the worse bits there is a lot more but to much to type….

I have a formal complaint in with the board of governors, and have been getting advice from Autism Anglia, regarding how to proceed. And we have been looking at other schools, for 2 reasons

  1. to see what SEN services they offer
  2. with a view to pull stephen out

I am going to use this to tell people about our issues and how we deal with them so anyone in a similar place can see how we are working through it and hopefully help them.