still fighting

well…

nothing has changed Stephen is till out of school, the council are still saying that there is no space in the local SEN school, and im still pulling my hair out!!

Jo had a call from the council telling us that they were looking at Stephens review this week, they talked about schools saying Market fields is FULL (our local ASD school), They don’t think Shorefields is suitable, would we consider putting him back into frinton Primary?? what planet are these people on, after the neglect he received there would we put him back…. Hmmm tough decision, let me think……………..NO

I can’t believe it has taken them over 6 weeks to look at the paper work and they cant even come to us with a proper suggestion on how to move forward on the problem, gives me a good mind to stop paying my taxes if this is what i’m paying for!

I know in the interim we are Home educating him, but this is proving difficult as he dose not want to do it, and is worse now the others are back at school, I think he misses it.

 

This morning i wrote to the council, and our MP, lets hope this gets a response or it will be the papers on my mailing list next!

https://www.facebook.com/groups/andrewsmarathon/  http://www.justgiving.com/AndrewLeechMarathon

HE by the sea

we have done it Stephen has been de-registered from school and we can already see a difference.

 

on sunday the 14th I took part in the british london 10k, stephen coped so well with being up in the big city Jo found a place by the finish line that was not to busy and where stephen could hide a little if it got to much.  He loved cheering on all the runners. i have raised £204 for Autism anglia and the donations are still coming in.

This week he has been working on educationcity.com and has completed all the eyfs science and maths and has done some english, he has also been doing the work sheets and books we have. He’s loving it and wanting to do it!

This morning we spent down the beach after doing some written work  We were drawing and writing in the sand and we have collected shells and are going to make a picture out of them.

 

I’m so glad we made the choice to do this, I can’t believe how quickly we can see the difference in him, he is back to himself and it dose not bother him that his brothers and sister still go to school.

chicken pox

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!

Statement of SEN review

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

Related articles

• Sudbury: Autism charity registers interest in school (eadt.co.uk)
• Diagnosis-Day (sendad.wordpress.com)
• The story so far (sendad.wordpress.com)
• http://www.clactonandfrintongazette.co.uk/news/clacton_frinton_news/10465577.Dad_s_run_for_five_year_old_Stephen/?ref=mmsp

Half-Term

School holidays are always a strange time in our house. The older kids are never seen as they are either out with friends or glued to t.v’s and computer games, and Stephen and Derek are just Stephen and Derek – happy, playful contented little boys. But this Half-term was different, Stephen has been really off definitely now himself.  I think school was getting to him, and he dose not understand why we had to see the doctor last week.

The older kids have been told about his diagnosis but have started overcompensating for him and his needs, so we got some books from the national autistic society to help them understand how to behave with him…

• My Brother is Different – this is a great book for younger ones and kids who don’t read very well
• Everybody is different A book for young people who have brothers and sisters with autism – provides more detail for the older ones

Our eldest has also been reading;- The curious incident of the dog in the night time – which i think is a great read for anyone who knows people on the spectrum or not.

On Monday we went for a family day out at Highwoods country park in Colchester, We went for a 2 hour stroll around the park taking in the views of the meadows, the town and animal spotting. Stephen was really enjoying the fresh air and seeing all the different places and hunting for the animals, but the further round we went the more we could see he was struggling to process everything, it got to the point where the last little bit he was almost being dragged to the end while he was only watching his shoes. When we got back to the visitor center we sat down for our picnic and an ice cream Stephen relaxed again as he knew where he was, after lunch we had a little play in the park and sat by the lake but be 2P.M all the kids were fed up so we headed home via the pets shop to get a new hamster ball for the schools hamster which we are babysitting again this week. Stephen slept the whole way home!

Tuesday was another frantic day as we had birthday party to attend, Stephen socialized for a little, well he was in view and played pass the parcel, after a couple of hours he disappeared, when i found him he was sat upstairs in his cousins bedroom, on the top bunk of the bed playing with fireman sam toys.

Tomorrow we are going to have our last fun day of the half-term before the arguments begin again tuesday morning to get everyone to school 😦 so we are going to Walton on the Naze to explore the naze and burn some energy.

 

 

On a different subject Jo and I have had some tough decisions to make regarding Stephens schooling, I think we came to a mutual decision and we discussed it with Stephen. It is quite interesting to hear a 5y/o’s view on his own education and how he wants it to happen, I have always known Stephen is smart but sometimes it does make me wonder who is the one with learning problems???? He even had reasonable arguments for why he wants it that way.

 

 

Diagnosis-Day

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

 

 

 

 

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!?!

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.