Get your boxing gloves on!

2. Get your boxing gloves on, as you are going to have to learn how to fight for your child. It is one of life’s many injustices that those who are already burdened with caring for a child with special needs, are going to have to fight for so much, if they are going to get what their child needs or deserves! Whether it is fighting for your child to attend the best school for their needs or to get a Disabled Blue Badge or for appropriate health input, none of these things happen automatically as you would expect in an ideal world.

We had to go to a Tribunal in order to get Joshua a place in his current special school, which is outside of our Local Authority area. This was a time consuming and demanding process, involving many professionals, and it must have been an expensive exercise too. In the end the actual tribunal took less than 20 minutes as the case was clear cut, the ‘judge’ recognised from all of the evidence that was presented, that he ought to change schools. The Head explained that Joshua could only be accommodated IF he was accompanied with a package of full time support, and our local Authority authorised it, so the deal was agreed. This could all have been resolved by a couple of simple telephone calls! Yet we had to show our commitment to the school change by facing a daunting tribunal. Not every parent would feel confident in that court-room environment, but there are organisations, like Parent Partnership and a charity that I have only recently discovered Cauldwell Children, who will hold your hand throughout the process.
I am in no doubt that it was the right move for Joshua and it gives me great comfort to know that finally, he is in the right place. I just find it frustrating that it was such an ordeal to get such a move as essentially, it boiled down to finances, but our son is priceless and should not have his life compromised because there is a cheaper, but inferior, solution.
Our battles have been numerous along the way; we are currently trying to source a respite provider: when Joshua left his first Special School, we sacrificed a generous respite package. Joshua used to spend every Monday night and one weekend in four in the school residence. We were well aware that this privilege would be lost if we changed schools but compared to the need for an on-site school nurse, this was a sacrifice worth making. Scott, our social worker, with some nagging, was able to place Joshua in a facility where he could enjoy one weekend a month and one weeknight every month. He enjoyed his time there and was always happy to go there and was usually jolly when I collected him on a Sunday afternoon. Sadly this facility has stopped offering our children overnight breaks for children and has changed to offer Adult Supported Living. So we lost this service in February of this year.
Three months later, I have been told that there is nowhere suitable within our Local Authority area and we have been offered foster families as a solution. This is not what I am looking for , as Joshua does not need any more experience of belonging to a family, we have given him that environment all of his life. Instead, he is missing out on a lively, but safe, overnight experience where there are several other teenagers of his age and he gains some independence away from his parents, as would be more ‘normal’ for a 14 year old boy. So I have rejected the alternatives that Scott has suggested so far and I have asked him to explore overnight facilities beyond our boundaries, and we are still waiting to hear back. In the meantime, the first night apart that we will have from Joshua since February this year, will be in June when he will go on a school trip and enjoy an overnight stay in a hostel with his classmates.
You need to be confident of what your child needs and pursue it, single-mindedly. Do not be fobbed off with anything other than the best for your child. In knowing our children inside out, you are the best judge of what they need.

Joshua is virtually non-verbal and so we have to speak for him and represent his best interests in the best way that we can. Although he could not express it in words, Joshua would be able to demonstrate his unhappiness. I realised that he needed to change schools for instance, when I called in at his old school, unannounced. In his classroom, my happy, sociable boy was sitting at his table with his head in his hands, not in the least bit engaged, and I , immediately, asked for him to be removed to another class and teacher.
Do not expect others to fight for your child on your behalf, as it will be your responsibility alone. I wrote to all of the candidates during the 2010 elections, to ask how they would support Joshua and his peers, so that I could decide where to place my vote. I had an assurance from the Conservative candidate that, because of his own disabled son, David Cameron empathized with our plight and would do whatever he could to help. The Conservatives won and some months later, I wrote to our MP to ask for his support in getting school nurses into the Special Schools in our area, as they had none. He offered me a face to face meeting, which gave me false hope that he was going to be able to help. Instead, he suggested that I protest outside public buildings with some friends and he would attend to get media attention! I had naively expected actual results and action, not just a PR exercise.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s