Between a rock and a hard place

posted in: Autism, Kids, Rants and Whinges | 2

Warning – this post is likely to be long and ranty and may contain swear words. Possibly lots of them.  But no pictures as I can’t use my laptop. <Sigh>

We finally moved house 3 weeks ago. Woo-hoo! We’d had the house on the market and waited so long, I don’t think I believed it would ever actually happen. We still don’t have broadband yet so access to the Interweb is somewhat restricted hence the radio silence. That and the mountainous piles of boxes we have about the place demanding to be unpacked.

Moving house is stressful. Search online and there are lots of sites giving tips on how to avoid most of the stress. So I don’t have any useful advice apart from the following – “Be prepared for stress when moving, particularly if you are going to have dealings with the County Council, School Admissions or the health service. There is no getting away from it. Buy wine. You are going to need it.”

For those that have been reading everything up until now, you will already know that Son A has Autism. We found him a fantastic school in the area but our application was rejected by Cambs County Council. So far they haven’t really deemed to tell us why. I spoke to two different people in their School Admissions Department and was told two entirely different reasons. I asked for them to put their reason in writing and so far they haven’t done so.

One of the reasons they stated by telephone was that we hadn’t exchanged contracts or moved into the area when we made the application. Now anyone who has even the vaguest idea about Autism, is going to realise that changing schools for a child with Autism is going to be a HUGE deal and that it’s going to have to be managed really carefully with a good transition between the two. That apparently doesn’t apply if you are a council. Councils simply say “Does he have a statement?” and as the reply is negative they then carry on reeling out their hoops for you to jump through and red tape to crawl through.

So we have had to appeal their decision. Which considering we don’t know how they came to their decision, is somewhat a little hard.  And we couldn’t appeal the decision until we had exchanged contracts, there was less than a week between exchange and completion and as Councils can take up to 30 school days to schedule your appeal (that’s 6 weeks to you & me) we’re now in the situation where Son A has been living here for 3 weeks, has no school to go to and the appeal is scheduled for next Wednesday.

The only reason Son A doesn’t have a statement, despite his current school applying on three separate occasions, is that Son A is making good progress under the current provision provided by his current school. It’s only taken them 2 years to get the level of support right, so I think they know what they’re talking about. So why is it then, that when we want to move to a different area that we have to go right back to the beginning?

We visited several schools in the area before choosing the one we applied for. If I was to say that the reaction received from some of those schools about an ASD child moving into their area, shocked and appalled me it would be an understatement. The attitude of some schools left me feeling sick to my stomach and very fearful for my sons future. Examples include school receptionists saying “You do realise there is a nearer school to your address” the moment I mentioned ASD and a head teacher who actually asked what Autism was and how it could be managed in school.  That’s even before we got on to the subject of support the schools could provide. Some schools mentioned the word “budget” almost as soon as I mentioned Autism, some left it a little longer, but in all but one school they were very clear that there would not be the budget available to pay for the same level of support Son A currently receives in his current school.

So I am expected to sacrifice my sons education on the altar of “budget” and council beaurocracy? I don’t bloody think so.

Hence why I want Son A to go to this particular school. They understand Autism, have experience of teaching ASD children and importantly, getting the best out of them. Every child is treated as an individual and crucially, not as a budget stealing freak that no-one wants on their patch.

Since we moved, I’ve been driving both boys to their old schools 3 times a week so they continue to receive a good education in a familiar environment. I could very easily have kept them at home but no, we thought their  education would suffer. It is 53 miles to their old school, so I have a school run of 106 miles, which I do twice a day. To say I am getting bone crushing exhaustion is also, an understatement.

While all this is going on, Son B is being assessed for Autism as well. He’s been seeing the paediatrician since he was 2 and starts his first week in the assessment nursery tomorrow.  They do a couple of hours with a multidisciplinary team every Wednesday, for three weeks.

But wait a minute you say, aren’t you having your appeal next Wednesday too? Yes. And guess what? The council won’t change the date. You get given your date and you decide whether or not to attend. If you don’t attend, it goes ahead without you and I suspect you may as well kiss any chance you had of winning, goodbye.

I spoke to the Child Development Centre about postponing Son B’s assessment but they couldn’t do that either. So I told them I couldn’t take him to the 2nd week and I told them why. So why did I get a message from the paediatrician this afternoon telling me I should “reschedule my other appointment” next week as it was important for them to see Son B on all 3 weeks. The tone inferred that I was a naughty little girl who had probably booked a frivolous hair appointment or something and clearly didn’t understand how important this is.

So now I’m expected to choose between my kids.  Which one is more important?  Which one is more deserving?

Moving has been hard. Bloody hard. We’ve had lots of meltdowns and behaviours to contend with and we have no supportive family to take the pressure off. We’ve dealt with councils and filled in appeal paperwork, also with no support, as it seems if you have the ability to string a sentence together, then no-one wants to help you. I’ve done everything I can to keep my kids in education, at great personal cost so they can have some consistency. We’re facing the possibility of receiving another ASD diagnosis for one of our children, which I think scares me more now than it did with his brother, as this time I know what battles we must face and the prejudice we must deal with.  Not just out there in the world, but from inside our own family.

And throughout all of this, we muddle through, we do our best and somehow manage to still come out smiling. Except today. Today I have to choose between my kids and I’m angry. Angry I can’t do more, angry there isn’t enough support for families, angry that no-one is listening, angry at a system that no longer allows decisions to be made without following rules blindly and angry that nothing will be learned from this. Once this appeal is over, there will be another ASD child treated like a 2nd class citizen along in a minute. Each parent has to have the same battle and no-one seems to notice that this is just plain wrong.

“Every Child Matters” eh?  Apparently unless they’re mine.

 

2 Responses

  1. you keep fighting you are doing an amazing job. xx

    • Queen Boudica

      Thanks Wendy. I found out some interesting information regarding the school today, so we’re feeling pretty hopeful today :)

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