We are five years into our journey with Jay and his world has always been beautiful to us!
Yet, life as a Autism Mum is also incredibly challenging! For five years I have been working with professionals and I am tired. Starting from the moment we first went to the GP with concerns, one Professional after another has seen Jay, assessed him and gave opinions on him!
When Jay attended Pre-school, I expected they would pick up on his delays and they sure did! Within a few weeks the manager had approached me to speak of them and how concerned she was. Thus began the first round of meetings and professional people coming in to assess him and telling me what they thought about my child! We received one to one funding at this setting very soon after Jay’s delays were flagged up and this came from the local Inclusion team at County Hall. I was having to fill in long forms that were not easy at all to read as they included Risk assessments on my child! The only reason for this was because in a moment of frustration Jay had tried to bite his key worker’s hand. Luckily, the worker was amazing and understood it was a sensory thing but it is mortifying to learn that your child is being risk assessed. I am glad to say nothing else happened after that and even now Jay is as gentle as the wind and does not have behavioural issues at all and I feel so relieved this is the case. He does hit out in meltdown but we have learned to deal with it in a calm way and he does not do this at school, only with his Safe people, ie us!
When Jay got to four and school age I could not just send him without first meeting with the school’s Head and Senco three months before admittance. This was the first meeting where it was very clear to them he would require full support but at this stage they could not give full time one to one care. Jay was given 75% one to one from a lovely TA who very quickly understood him thankfully. I remember one of the TA’s whose own son had Autism, saying to me one day that Jay was very like her son. By this time I had already realised that Jay was Autistic so it did not surprise me.
By the end of Reception year we had our diagnosis having attended so many meetings with Specialists. A team called ASMPACT assessed Jay in school. They are made up of multi-professionals. Child Psychologists, and Specialist Speech Therapists assessed him, and these people diagnosed Jay with Autism Spectrum Disorder and Global Development Delay. Jay is at the low end of the Spectrum, meaning he has classic Autism and has severe delays in all areas of development which put his development age at two and even though he has changed over the years, his development age has stayed the same, and we basically do not know whether it will ever change!
After Diagnosis, the school decided to go for a full EHCP which is the replacement for the old Statement of Special Educational Needs. Many families, I am sorry to say , have great lengthy, stressful battles with County Councils to get their child an EHCP and I have met a great many who have shared these battles with me. In our case we went through the long process like everybody else however the County agreed after a two hour meeting to give one to Jay. The meetings we Autism Parents have to attend are hard! To be in a room with many professionals all discussing your child and giving opinions that you may well not agree with is so mentally exhausting! In the meetings I have attended I feel personally that a lot is expected of us. I have a background in work in the Early years Foundation Stage Curriculum, so I had an advantage and was able to challenge the staff if I felt they put him in the wrong developmental stage in the assessments done on him and believe me I did challenge when required in order to get his needs met! Sometimes we just have to be firm and strong in order to have things our way as we know our children the best!
Before the Care plan meeting, I had met with the Educational Psychologist for the mainstream school he then attended, and my goodness what a lot she expected of me! I was actually exhausted after that meeting as she had me writing the SMART targets for Jay for that school year! If I had not the background I had, would she have expected me to write them and understand what they even are? For those who do not know, the SMART targets are used as a means of progressing the child and it stands for: Specific, Measurable, Achievable, Realistic and Time-related. The targets I was expected to write were in line with the Early years Foundation Stage Curriculum, and so because of my profession I could do them yet I wondered if this lady would ask a parent who had no knowledge of this to write them for their child? It is crazy how much pressure we are put under! For some people , just speaking out at a formal meeting is enough to fill them with dread yet if you do not speak out, the decisions will be made without you. Then there are the questions fired at you in these meetings where you have to come up with an answer with ten pairs of eyes boring into you! It is blooming scary and also so exhausting.
The most important meeting so far came in year 2! This was the year the County were to make the decision to give Jay a place at the local SEND School and would make these decisions alongside the Professionals working with our family. From all agencies, including the NHS, the School Staff, Speech therapists, Occupational therapists, Child Psychologists, ED PSYHCS, Paediatricians and Specialist Autism Teachers -they were all sitting in that cramped room with myself and my husband, all waiting to air their views on what was best for our little man!
This meeting lasted 2.5 hrs and the main objective as far as we were concerned was the transition to the special School so Jay could meet his full potential with staff who would understand him and also be able to meet his complex Sensory needs and teach him the way he learns, NOT, teach him the way they teach in mainstream! Many things were discussed and what was clear was that Jay had not developed at all during mainstream school! He could not read or write or answer questions. He required one to one to help him meet any targets set and he was also in distress morning and night at home having full meltdowns every day whilst he desperately tried to process the school day! The Senco for Jay’s school always felt things were working and I do understand as an Early Years Practitioner, that you do want things to work however this was NOT the focus for us and a few times I got very rattled, because I felt that whether Jay was emotionally happy never seemed to matter to school, just because Jay was holding it together for them. Yet for us he was letting out all the frustration at home and on a weekend too and to us this was a clear sign of his unhappiness in the mainstream school. I explained that it was not anything the school were doing, it was just the sheer amount of noise and demands he had to process and the severe sensory reactions to that plus his delay. Luckily the County representative completely agreed with me that Jay’s behaviour and reactions at home were more than enough proof for her that he was in the wrong environment and that he needed a more specialist environment to fully meet his complex needs! Phew!! At that point I heaved a huge sigh of relief and the meeting ended. Some of the Professionals came to speak with me at the end and my special needs Social care coordinator told me that everything I said was spot on and that I championed Jay’s cause wonderfully. I was also called a ” Force to be reckoned with” -this she said, did not mean in a bad way-it meant that I had fought his corner and I had done this calmly and eloquently and I believe this is the way to do it -to firmly and consistently state what it is you feel your child needs, and to never stop until that need is met because at the end of the day, this is your child’s whole life and the decisions made about them at this stage can determine the course of their lives in the future and will also meet their needs right now!
Next Time: Jay’s scrambled Sensory system- Who am I? Where am I? Where is my body? Staying “Grounded” in his Autism universe!