I sit here today with a form to fill in. A form which has to be sent in by the end of the week, and yet, it sits blank in front of me. I always leave it until the last minute, because the questions are never easy. How can they be, when they are about the struggles your child is facing?
Since we first raised concerns about our son with the GP almost three years ago, we’ve filled in numerous forms and questionnaires. Too many to think about. Each one just like the last, but they never get easier. Forms to help with diagnosis, to access support, for disability living allowance, whenever you meet a new professional. I feel like we’ve answered the same questions 100 times over. What was your child like as a baby? What struggles does your child face on a daily basis? How do they compare to another child of a similar age?
Today I’m filling in a form which will be used to decide whether or not our education board will give Neil a statement of special educational needs. This statement will set out Neil’s needs within school, and outline what can be done to help him. We’ve been in the process of getting a statement for almost 2 years. We’ve answered these questions many times during the process, with the teacher, with the special needs coordinator, with the educational psychologist, and this time for the education board.
The thing is, since Neil was diagnosed with ASD, we’ve just been getting on with things. We know our son well, we know what triggers his anxiety, we know routines make a happier home, we know (to some degree) how to avoid major meltdowns. ASD has become such a big part of our lives that it all feels totally normal. I’ve become so used to our routine, our way of doing things, that sometimes I forget Neil even has Autism. Then you have to fill in a form, answer in depth questions about the level of care your child needs, going through all of the details of your child’s daily struggles. When you write it all down, you realise how much extra work you do each day. It suddenly makes everything feel real again. My son is different. My son does have Autism.
The forms will continue to come, we will continue to answer the questions that remind us how different things are. And answering the questions won’t get easier, but if it helps us get the support Neil needs, we’ll answer those questions forever.