Sometimes it dawns on me how much of what I envisaged when I was pregnant has turned out to be so different to the reality.
Of course, this is something that goes for all of us, especially with the first baby. We read the books, the blogs, we play Aunty to our friends kids and we think we know what’s coming. And then the baby comes and it’s the worlds biggest reality check.
But when you have a child who is born with additional needs, that learning curve is another level. I remember when Josh was a little baby, a Mummy friend and I used to go for walks nearly every day, come rain or shine, to get out the house, get some fresh air and enjoy the lovely neighbourhood we are so lucky to live in. There is the loveliest primary school that we’d walk past most days and we’d laugh about how the kids would be there before we know it, running around the playground and making potentially life long friends.
So last week when I was looking around a school in the city, specifically for children who have autism, with it’s plain walls in a calming grey colour (most autistic children are extremely overwhelmed by loud displays and this can cause sensory overload) and no seasonal displays that you’d see in any mainstream primary school, it was yet another dose of reality. As we walked round, trying to take it in and undoubtedly admiring their facilities and capabilities of dealing with children like Josh, my heart did break a bit. This wasn’t what I expected my experience of looking round schools for my first born to be like. I am ashamed to admit it but in my head I just thought “this isn’t fucking fair. I don’t want to be in this clinical looking building that almost felt like it had no soul. I want to be with all my other Mum friends discussing the pros and cons of the mainstream schools in our town”.
Being an autism parent is often overwhelming but I feel like each hurdle I’ve faced head on, dealt with and been stronger for it. But the school situation is by far the most overwhelming thing I have had to deal with and my head is in a massive spin because of it. There is a hell of a lot more to think about than catchment areas. There’s EHCP’s (Educational Health Care Plans – these are put together following professionals observing your child, gathering evidence and reports from their diagnosis, their behaviour, their needs and then they stipulate what a school must legally do and provide for that child such as one to one support – they are hard to obtain and even harder to get right), mainstream or specialist school, dual schooling (so splitting their time between mainstream and specialist), small village schools or bigger schools that are likely to have more funding. Then comes all the additional worries; will I ever be able potty train him, will he be speaking more in a year, will he ever be able to sit down for a period of time in a lesson, and the pain of wondering will other children be cruel to him because he is different.
When you’re an additional needs parent it feels like one constant fight, you’re constantly battling for professionals to support your child and provide the best care they can because your child needs a little extra help. Why is it when you’re child is the one who needs that extra help you have to be fighting harder than any parent you see who just gets to apply to a mainstream school for their nuero typical child. It’s like you’re being punished sometimes; it’s not enough that your baby is undoubtedly going to have a tougher time in life but for any help you’ll have to fight like some kind of unyielding Mummy warrior.
I looked round a mainstream primary school this week and I loved it. My heart soared as the SENCo (Special Educational Needs Co-ordinator) spoke with confidence in their abilities to support children like Josh. They had specific nurturing areas for children with such needs and who need to be phased into activities and environments a little more delicately. But I also felt myself welling up because I looked into the classrooms with hope, seeing these adorable and happy children, I also had to remind myself that just because I liked this school and it was everything I had dreamt of for Josh, could he realistically cope in a class of 20-30 children.
Because right now I don’t know. I feel confident in most things where Josh is concerned; the places to take him, the events to include him with, the people he sees. But if you asked me now where do I think Josh should go to school, a mere three months before I need to get that mainstream application in (if that’s the route we go down), my answer would be I don’t know. And that’s almost embarrassing for me. All I do know is Josh needs to be surrounded by understanding people. People who are educated on autism. People who won’t label him as naughty or difficult.
I hate the confusion I feel right now. I hate the envy I feel for seeing my friends full of excitement at this next chapter when I feel like I am being eaten up with uncertainty. But I do know that come hell or high water, I will get this right. We will get Josh into the right school, wherever that may be right now. And I thank the Lord for my husband with his calm and optimistic views on the whole situation.
For now I will just keep trying, keep looking at options and above all, keep fighting.