My son Tobie has not been offered an appropriate school place.
Tobie has severe autism, on the DSM5 he falls within the highest severity level-'requiring very substantial support' he suffers severe sensory processing disorder and global developmental delay-his needs are far too great for mainstream school. Autism is unique for every person with the disorder. Among the vast array of difficulties Tobie faces due to his autism are acute distress when travelling in the car, severe separation anxiety & acute distress when there is significant change in his routine. Tobies sensory difficulties have been massively underestimated & misunderstood by the local authority- for Tobie sounds, smells, movement, vibrations, sights and unfamiliar journeys can actually be painful. A car journey on a less than perfect day can result in meltdown, his mind will panic, his tiny body will go into survival mode and he will sweat,scream, sob, struggle and cling to me as though the car is on fire. His body is quite literally in survival mode. There are soothing and distraction techniques I can use to keep him going and I use them all-we have a car with a panoramic roof, he uses an in car DVD player, iPad, I use massage, fidget toys and a deep pressure body hold and many times these will work but not every time. This may sound extreme and indeed it is but it is life for many parents of children with autism. Tobies fear at these times may be irrational but it is quite real and he has neither the receptive language or self regulation to control it. Car travel is one of a great many triggers for Tobie as he struggles continually to make sense of the world outside of his own home-his autism is THAT severe. The nearest special needs school to our home is Tettenhall Wood School which is a specialised autism school and therefor extremely appropriate for Tobie. It is a 10-15 minute journey which is just about manageable for Tobie most days so it seemed my prayers had been answered. Tettenhall Wood school is covered by Wolverhampton local authority and we live in Perton which is right on the boarder to South Staffs- Meaning I had to ask South Staffs authority to fund Tobies place which they agreed to do and approached Wolverhampton to request a place for Tobie at Tettenhall wood school. To my despair Tettenhall wood school is oversubscribed and unable to offer Tobie a place without an extra cost to south staffs. Wolverhampton local authority did not ask one question about Tobie and his needs before refusing and even refused to add him to the waiting list as they would only offer a place to a Wolverhampton child (we are approx 1 mile out of area) Now south staffs will not fund his place as they consider the extra cost to be an innapropriate use of funds. The only School place offered to Tobie has been a place at Cherry Trees School which is up to a 45 minute journey and totally out of the question for Tobie. How can a five year old, extremely vulnerable child be expected to start each day in survival mode?, (It is a general special needs school and so less suited to Tobies needs than Tettenhall wood)The daily distress and anxiety that the journey alone would cause him would be psychologically catostrophic, add to that the separation from me as his sole carer and safe place as well as the change in routine. Tobie is at risk of another regression if he is forced to attend the school offered. I have documented evidence of this from doctors involved in Tobies care. As a family we have faced one catastrophic regression for Tobie. We helplessly watched as he lost his speech and cognitive skills. He became withdrawn to the extent it felt we had lost him. With endless hours of intervention and hard work Tobie has slowly progressed into the happy and cheeky little boy he is today. I can not risk another regression for Tobie he has worked so hard to get to where he is and he is still progressing steadily. All uk children are entitled to an appropriate school place including those with considerable special needs. While I understand that the extra cost of a place at an oversubscribed school is substantial Tobies needs are also substantial and he deserves a school place that he can attend without any risk to his health, I have now spent almost 2 years chasing South Staffs local authority for a resolution to this situation for Tobie and was forced to hold him back a year in nursery for lack of a suitable school place. I have endlessly described Tobies difficulties and provided piles of evidence to support my reasoning but it falls on deaf ears. There has been constant pressure to accept the place offered with the reasoning that other children manage it, no matter how many times I explain that the very nature of autism is that it is unique for each child. I have been (In my opinion) unfairly pressured by those involved into accepting the place at cherry trees school, I've even been told that I could not win an appeal so there would be no point in trying. We have now reached the end of the time line and Tobie is without a school place for September, we have fallen into the system and been forgotten about so many times that we are still awaiting a final EHC plan for Tobie so that we can appeal it. I even had to fight to get the evidence From Tobies doctors, nursery & therapists included. My sons entire future is riding on a question of financial cost and a line on a map. Please support Tobie and sign and share to help him get a school place he can actually attend. This could be the difference between Tobie growing up to be a fully functional adult or needing around the clock care for the rest of his life please support him!