Please excuse the ubiquitous letter however so many people and so many departments have factored into our time in Hertfordshire that I can’t particularly address it to one individual. That would be unfair and unrealistic.
I have had quite an emotional week with one thing or another but what has pretty much tipped me over the edge in terms of how I feel is the inability of you, HCC to make my life that little bit simpler. Not just my life, my son Jude’s life. It’s a silly little thing really, just a school transfer. We have been waiting for a date since the summer and between August when Jude was initially offered the chance of an early transfer to a school I have always wanted him to attend and now, I have probably spoken to around thirty people, all of whom have attempted to transfer me onto another department/team/individual. Only today (15th November 2016), after all these months have I finally located the person in charge of our “case”. A case. My son’s educational and social needs are lumped under that rather arduous and indeterminable word void of any personable or thoughtful meaning.
The inexplicable enormity of this one silly little issue of a date for my sons transfer has brought back a wave of bad memories relating to the constant battle I have had with you to ensure my son receives the therapy and care he needs, the care that only professionals and specialists can provide. Specialists such as Physiotherapists, Occupational Therapists, Speech Therapists and Music Therapists, all of whom he was refused access to which was strange because in our previous county Jude had received all of the above, without question or issue on a weekly basis. All of which he was refused despite the fact they were mentioned as beneficial and in some cases necessary within his (then) Statement of Educational Need.
I feel like you have most ardently failed me in my role as a mother. I appreciate that responsibility for Jude ultimately falls on my shoulders however without support, I can only do so much. Let’s focus on what I consider the main two professional areas necessary for my son:
Firstly, Physiotherapy. Jude had an assessment when he was about five however, it was deemed impossible to offer him any sessions because he could already walk. Yes, walk. The benchmark for being physically ay-ok by HCC is the ability to successfully get from Point A to Point B on your feet. Needless to say this denial was refuted however, it is evidently a pointless fight. I actually had a row with one of the “main” Physiotherapy team members because she felt I was unreasonable insisting on Jude having this type of support. How dare I expect more than a basic movement for my son! At the age of now almost eleven he cannot even climb a climbing frame and prefers to hold onto a buggy or take a hand when walking through town as he is still very wobbly.
Occupational Therapy – Jude was refused this on the grounds that his concentration was not good enough which is a pretty harsh judgement for a five year old child with learning disabilities. This is one area in which I feel I have failed Jude the most. At his current stage, he is still unable to do up a zip, button up his coat or put his shoes on himself. He can hold a pencil and write his name fairly legibly but his finger strength is incredibly weak. Yes, I know I could do a lot more to help these notably standard activities however attempting to fit Occupational Therapy sessions into an already busy household is unrealistic. The Occupational Therapist we used to see in our previous county used to give Jude weekly exercises and it is this spoon feeding of information and guidance that a mother like me needs. She used to also claim how great a focused session was for Jude’s concentration as sitting and working on an activity does not come naturally to Jude; it really made a difference but you didn’t listen.
Because of the trillions of phone calls I have had to chase up, the referrals we have waited patiently for, the paperwork I’ve ploughed through, the transferring through your complex web of telephone centres, the hospital assessments, the let downs and the baffling amount of people I have to speak to just to find out when my son will be moving schools, I feel emotionally broken. I feel I have failed my son and I blame you largely for this sensitivity. I now have this overwhelming guilt and anxiety that I could have done better. Why couldn’t I have just listed down all the people involved in one assessment, why didn’t I jot down this number or that number because now we have to start again and I’ve wasted another week calling back and forth, why didn’t I fight the refusal for this or that therapy, why didn’t I ask around for contacts and possible support networks?! Largely because I was lost and looking for your social care department to guide me but this never happened.
When we moved to Hertfordshire it was literally a few months before Jude was starting school. I assumed, with his Statement of Educational Need making reference to his SEVERE learning disabilities, his need for someone with him to change his pull ups and all the other problems he then faced that we would be given the option of a special needs (SEN) school. I even visited a few and chose my favourite however, whilst on the phone to…I have no idea because I spoke to so many different people…I was told that there was no way we could have a SEN school because Jude was “not known” to the system. I thought that was why he had a Statement. I argued my case however, because of the short time frame I was told to choose a mainstream school there and then on the phone. Luckily, I know the area so chose what I felt was best however, is that really a way to treat a mother trying to find the best provision for her disabled son? I was told I could take it to panel however this is a long process and Jude would lose any mainstream place in the meantime. I was basically backed into a corner and as such, Jude spent his reception year feeling inadequate amongst his peers and barely involving himself in class activities. I spent a year feeling awkward in the playground at pick up and drop off time. The teaching team spent a year attempting to involve Jude in group class work knowing it was entirely futile because he had no idea what they were on about. We were lucky he had fantastic Learning Support Assistants however, again these were only part funded by you despite the fact Jude was incredibly vulnerable, unable to sit in class and still in pull ups. You thought it was ok for him to spend an entire afternoon each day unsupported but thankfully his school thought otherwise and financed his carer partly themselves.
Anyway, I could write a letter a hundred pages long – in the ten and a half years Jude has been alive, he has spent over half of these in Hertfordshire so we have many tales to tell. However, I will leave it at this for now. I just wanted to let you know, HCC, that you have failed me as a mother and as such you have failed my family and in particular my son, Jude.
I just wonder how confident, fantastic, articulate, outgoing, popular, social, fun and most importantly happy Jude would be if things had been different.