I think one of the hardest things about having a child with Special Needs is not the day to day, we love them with every bit of our hearts, it’s all the extra stress that comes with it. The red tape & paperwork, the fighting to get the right support, the reports, the forms, the appointments, the jumping through all the bloody ridiculous hoops, battling through the system.
Don’t get me wrong, I appreciate every little bit of support Archie has had on his Autism journey so far, but the ongoing battle is draining.
There has been a lot of professionals involved with Archie from a young age, he was showing Autistic traits very early, and throughout the last 18 months of appointments & assessments they have agreed that Archie has Autism, unofficially. Now this is the key thing, at the moment Archie does not have an official diagnosis for Autism even though we know what we’re dealing with, even though his therapy is Autism based, even though he has Autism professionals involved in his care, it’s still not official and won’t be for at least another 12 months.
The waiting list for a MAAT (Multi Agency Autism Team) assessment is in excess of 12 months, and to actually be accepted onto the waiting list you have to meet so much criteria, and not just from a healthcare perspective. Our Paediatrician can’t be the one to refer us to the waiting list, it has to come from an educational environment. So our SENCO at pre school is now taking the lead and is having a daily battle to gather the correct evidence & paperwork to submit. I’ve lost count of the phone calls & conversations we’ve had trying to collate everything we need.
Between us we are filling in so many reports and charts on a day to day basis, chasing other professionals to get the correct reports outlining Archie’s developmental, sensory, social & communication issues in order to meet the criteria for the MAAT Assessment, even though we all know he needs it and even though we all know what the outcome will be.
Some people might wonder why we ‘need’ the official diagnosis but we do need it. We need it as soon as possible as we need to think about his future. Which schools should we be applying for? Would mainstream or a SEN school be better for him? We won’t have his diagnosis before the deadline for applying for primary schools so instead we need to also have an ECHP in place. Simple solution right? No. Again, more red tape, more paperwork, more chasing & battling.
An EHCP is a legal document which sets out a description of your child’s needs (what he or she can and cannot do) and what needs to be done to meet those needs by education, health and social care. So we need an ECHP ready for when he starts primary school, to outline what support he needs on a daily basis. Archie has some very complex needs which I won’t go into but his current nursery, who are amazingly supportive to him, feel that mainstream school would be too much for him. He currently struggles in a room of five children, who he’s been with for the past year, even with 121 support so how he would manage in a class of 25 children I don’t know. Not all children will get an ECHP so we know we have yet another fight on our hands.
The Local Authority have told me they want to take a ‘sink or swim’ approach to Archie’s schooling, which I think is ridiculous. Why would you put a non verbal little boy with very complex development, sensory, social & communiction issues into a situation to see if he sinks or swims before you will outline what support he needs? He will need support from day 1 at school, and in the right school. I have already spoken to several of our local schools who have all told me the same thing. They can’t tell me not to apply to their school as it’s against the Disability Discrimination Act, and that they will do what they can to support Archie, but they don’t feel that their setting would benefit him and that he would severely struggle.
So what do we do? We keep ploughing on, filling in the forms, writing the reports, chasing the info, making the phone calls, following the system because what else is there? Just playing the waiting game?
No, my boy needs his mummy to fight his corner.
Have you been in a similar situation? What advice can you give?