Just blowing the dust and cobwebs off the blog before I begin..... not only has my trusty laptop failed me and just like in the early months of this blog I am reduced to borrowing my son's computer, I am also just about emerging battered and bruised from what can only be described a rocky start to 2013.
Life is never going to be easy parenting four children, especially when two of them require additional attention but when you are also battling the system to get your children the support and help you need then reserves run dry very quickly.
Last month for the first time in my entire life I had a panic attack, I felt overwhelmed, could not move from my bed for a few hours, everything was too much. Those who know me know that I am the one in control, I have the level head and I also have safety valves for dealing with stress (normally going for a long run, doing some yoga or when I'm not feeling so saintly drinking a really decent bottle of red wine!) - finding I could not cope gives you some idea of the stress I was under at the time.
And funnily enough it was not to do with Daisy - she has had her own ongoing problems but this is our life. No, this time it was about our eldest son, Theo, and our ongoing battle to make sure he gets the support to get a fair shot at achieving his academic potential and be the amazing person we know he is. Theo has Asperger's Syndrome - it's a form on high functioning autism. He is incredibly bright but he approaches learning in a completely different way to us neuro-typical people - as I explained in this post A Different Operating System, it's like Theo is a Mac and we are PC's and we all know you can't get a Mac to work if you treat it like a PC. Once you understand those fundamentals then you're well on the way to understanding Aspergers.
So for Theo to achieve his best potential academically he needs to be taught in a way that takes into account how he processes information and how his mind works. Over the years we have worked with his school to put in place a programme of support to help Theo with this, but as the level of support needed was going up, in direct correlation with the impact of puberty and the increased anxieties caused by Daisy's health at home, it became obvious that supporting Theo through existing school resources was not going to be enough and it was necessary to apply for a statement of special education needs to ensure that funding to support him was ring fenced and his needs were recognised and reflected in a legal document.
And so our journey to get a statement for our son began. I look back now to how ridiculously easy it was to get a statement for Daisy, but then her needs are so great and obvious and complicated that there was no question over where she would go to school and at what level of support. With Theo it was a different story - the world of statementing is very different when your child has an invisible disability, and when your child is also a lot older - but at the end of the day he's still my child and visible or invisible without ensuring he continued to receive a focused and consistent level of support he is not going to achieve the potential that we all know he has.
And so starting that process, alongside the care of a chronically sick child and normal life, I began to feel like a ball in a pinball machine being bounced from one side the another, thinking I was winning then finding myself hitting a wall...it just seems to me that in the statementing process the strategy seems to be to bounce parents back and see who comes back for more. There seemed to be problems at every turn, from even getting the local authority to agree to assessing our son - apparently a diagnosis of a lifelong neurodevelopmental disorder, associated anxiety and sensory issues, long term medication and being under the long term care of Child and Adolescent Mental Health Services does not automatically entitle you to be considered for statement (note I say "considered" at this stage we just wanted them to assess our son's needs and decide if he warranted a statement). So we were turned down at the first hurdle, we picked ourselves up and submitted our request again, with even more information and evidence (yes - did I tell you what a huge paper moving exercise every stage of the process is?). And eventually, after having to ask various other professionals who know our family well to intervene on our behalf the Local Authority agreed to assess our son. I also discovered at this stage that we were missing a whole load of paperwork relating to our application as it had not been franked in the mail room of the council offices so was not delivered to us and returned to sender....yet another obstacle.
Weeks after first requesting a statement (bearing in mind we had to wait for the end of the long summer holiday because nothing happens in that time) we got the letter agreeing to assess our son. I duly wrote down all the dates in my diary - 10 weeks from the day we received the letter for reports to be obtained to help the panel decide, two weeks after this date for a statement to be finalised. We started the round of appointments and requests for information - meetings with the community paediatrician, supporting evidence from people involved with our son's life, evidence from the school, assessments by the educational psychologist. To my untrained eye it all looked good - the evidence was stacking up and a picture was being built of an incredibly bright, amiable young person who, because of his different wiring and the unpredictability of his home life was failing in school despite ever increasing levels of support being put in place. A boy who thrived on one to one and small group teaching and could achieve incredible results with the right level of support - everything was submitted, people who knew about these things said that we had a watertight case, every box was ticked and so we waited for an answer from the panel. The anonymous, faceless team who would assess the information in front of them and with either a nod or a shake of the head decide our son's fate. The panel - to this day we still don't actually know who sits on the panel and who sat on the panels which considered our son's case.
Our case worker - assigned to manage all the paperwork was not allowed to sit on the panel, there was not school representation, we think that an educational psychologist was there - who knows?? For all we know they could have invited in the tea lady who pushes a trolley along the corridors of the Council Offices to come and cast her vote. What we do know that on the last Friday of the Christmas School Holidays a large brown envelope dropped through the door..
This was it - surely a rejection wouldn't have come in such a hefty envelope? But no, I had not factored in the "Note in Lieu" - the pseudo statement, the piece of paper which says your son needs help but we're not going to provide any financial support to the school to provide this and by the way this letter has no legal standing so if you need any more help it's about as useful as a chocolate teapot.
And so we had to go up a gear, we had lost a battle but the war was not over and this is where parents like us get worn down because how many times can you be knocked back to pick yourself up and fight to get your child what you know they need, fight a huge bureaucratic system, a faceless machine. I googled my rights - we should request a mediation meeting, I should register our dissatisfaction with the outcome of the statementing process and we should start tribunal proceedings. I did all three. I meant business. We worked with the school to build an even more watertight case, we broke down hours of support and presented it in financial terms, I wrote even more pages of parental evidence, including the fact that we pay for tutors outside school to provide one to one help, I spent hours getting advice and support from the Parent Partnership Service, from helplines, from forums, from anyone who would help me climb the steep learning curve in the special education needs process and get what my son needed.
We submitted our tribunal papers and received a date for our hearing and started to read up on SEN case law as there was no way Andy and I could afford the thousands of pounds charged by lawyers to represent us at a hearing. After chasing for a few weeks we also received the offer of a mediation meeting. Our chance to present further information to help our case. Sadly however an hour before the start time this meeting was cancelled - can you imagine how deflated we felt, how much we were banging our heads against a brick wall? Andy had taken a day off, Daisy was in the hospice so that we would not have to leave the meeting early to put up her TPN, we had prepared our paperwork, gone over and over it. We had met with the school team who were also going to attend, and they had spent considerable time also putting together additional information that would help our case. Fortunately we were able to get through to them just as they were getting on the train to the meeting - two senior members of staff from our son's school, two busy parents, an overworked parent partnership advisor, one very precious hospice night....and not even an apology or explanation of why our meeting was cancelled. So then not only did we have to continue our battle for the statement, I had to lodge a formal complaint about our treatment (apparently it was due to an unforeseen diary clash...), this was a a real low point, we were prepared to go to court but hoped that mediation would provide the answer, was a cancelled meeting a sign that the local authority wanted to meet us in court, did we have the energy (or time) to do this???
You can understand why parents give up, they accept the first knock back or just lose the will to fight any more. We knew we were right, we knew that we had to battle. After all the system had let our son down over and over and we owed it to him to get it right for his final few years of school education so that he could achieve his ambitions. So, to cut a long story short, we picked ourselves up and continued. A meeting eventually happened, it emerged the documentation submitted by the school at the very beginning of the process had not been presented to the panel, more info was presented, the local authority was suitably embarrassed about the process to speed things up and suddenly, before we had time to catch our breath a new panel was sitting and later that day I had an email; " Dear Mr & Mrs Nimmo , I confirm the SEN Resource Panel considered the additional information today. The panel agreed to issue a Proposed Statement....." And so it came to pass that on valentine's day, a week after his 16th birthday, 3 years after we eventually had to pay for a private consultant to diagnose his condition, 5 years after leaving primary school having passed the entrance exams for all the local grammar schools, it became acknowledged in law that to succeed in school and achieve his fullest potential our son needed a programme of funded support and this support will be protected until he is 19.
It was a long and stressful process to get to this point and the reality is we are still faced with trying to get our son through his GCSEs in one piece and into the sixth form and then hopefully out the other side and into university at long last doing what he wants to do - Computer Programming. Our lives go on, we have the document we fought so long and hard to get (well we have the draft and are just waiting for a few last minute changes). We have this because we were persistent, we did not let the system get the better of us, we had support from some great free services, we are articulate and literate and confident when dealing with bureaucracy. But what about the other children who also need the support we have now managed to secure for our son, what if their parents are knocked back at the first hurdle and don't know what to do next? Why is getting what you believe and know is right for your child such a bureaucratic black art???
Well apparently there are changes afoot - some good, some not so good and some are downright worrying. The Children & Families Bill proposes doing away with time limits for the statementing process which could lead to even further stalling (and wearing down of the parents over time I imagine), there will no longer be a requirement for a minimum level of input by professionals, it means the local authority can decide who it asks for input on the child's special educational needs - this may lead to an incomplete picture of the child's needs and worryingly when I think about my other, much more medically complex child, it still does not take into account the big picture of health and social care. We are already experiencing this new battle as we try to secure funding in Daisy's statement for her psychological therapies, with everyone denying that it falls within their remit.
Well I have a chance get my point across to someone who matters soon. In a couple of weeks I will be meeting with Edward Timpson MP, the Minister for Children and Families. He wants to meet with parents who have experience of the statementing process to talk about my experiences of statementing and talk through the proposed changes to in the Children and Families bill - it's going to be an interesting 90 minutes, for both of us! But I don't just want it to be about our experience, if you were in my shoes, what you you be saying to the Minister? Let me know.
In the meantime, if you are struggling in the statementing pinball machine I would highly recommend regular conversations with your local parent partnership advisor - they are paid by the Local Authority but their role is to help you negotiate this minefield. Work closely with your school senco. And contact some of the free advice services available - I used SOS!SEN and Ipsea. Ipsea has now introduced a telephone appointment system so there is no more hanging on the phone for hours waiting to speak to someone, I had a 1 hour telephone consultation with an advisor that was invaluable. If you do end up going to tribunal (and sometimes you have to), these charities will provide you with advice and guidance and in some cases will represent you.
The best advice I can give other parents however comes from Winston Churchill "Never, never, never, never give up"