By David Buckley | Published on August 31, 2020 | 5 Minute Read

The piece was written 9 month ago and so much has changed in the way in which we have embraced our son's differences and celebrated them.

Marie is the writer in our family not me. You know for all the important stuff like birthday cards and ‘love’ notes threatening to kill me when I haven’t taken the bins out so this is a whole new thing for me and I’m not sure if what I’m going say will be more than ranting so please bear with me.

I know it’s a cliché but because of the stigma it’s harder for me as a man to admit when things upset me especially as I am always trying to be the strong and rational one stopping others around me falling apart. I suppose this is why it was easier for me to stay in denial as long as I did.

Even though I’m coming to terms with the fact William has additional needs? Special needs? A development delay? What am I even supposed to call it since we don’t even have a diagnosis? They all sound like such derogative terms, like I am insulting him. What I am finding really hard is coming to terms with what this means for him in the future. I always wanted things for him which I didn’t have. We set up a savings account for him before he was a year old. We wanted him to have the money for university, so he didn’t become too bogged down with student loans or even use it as the deposit for his first little house with a girlfriend. Will that be possible now? Could he live on his own? Or will he always live with us? I know it may seem like I am thinking of worst outcome but he hasn’t progressed past 11 months old!!!

We specifically moved house back in summer so he was in a better catchment area and had better opportunities for education and now it looks more unlikely as the days pass that he will be going to a mainstream school let alone the one we chose. Marie even asked if there was anything in place to introduce special needs facilities and the answer was no… does that mean that wherever he goes he will need to get the ‘special’ bus? You know the one. The one kids made fun of without understanding its purpose.

I know it’s selfish of me but I can’t help but be sad and angry about all the things we won’t or can’t do together because of this! It feels like I’m grieving for the future I had planned for him and I know it’s ridiculous because he is here and he is so loved but it’s not what I dreamt of. I dreamt of seeing him at rugby training after school and forcing Marie to watch the matches on a weekend come rain or shine. Dreams change and I would like to think we can find some common ground we are both cable of taking part in but that doesn’t stop this loss.

Today when I took him to nursery there was a Mum dropping her daughter off at the same time and in that instant I hated her… she didn’t do anything wrong but she stopped her kid who’s in Williams class and asked her for a kiss goodbye and I hated her for it because we’ve never done that and don’t know if we ever will. I hated her because she will take that for granted and I wouldn’t.

I’m scared for him… If he never speaks how can we expect him to learn sign language when he doesn’t look at you, wave or clap… how do you get round that? How can we use PECS when he won’t look at anything you put in front of him and will purposely try to avoid them as if they will burn his eyes? Nursery told us to try and train him! Like a dog basically by rewarding eye contact with a treat. A bit like how we taught Rust to sit. So we have to put his treats in a box he can see through and when he brings you it only give him one if he looks you in the eye but he doesn’t. He will cry and then scream. Occasionally he will slap you and collapse in a mess on the floor only to go to next person and try again. Could you put your child through that when it doesn’t stop, he just gets more and more upset and it so hard.

I worry that he will struggle more as he gets older. Will he be bullied because he’s different? Or because he doesn’t speak? Will he have friends or be sat on the playground alone? Will they laugh at him because he can’t touch bread without having a meltdown? How can we be thinking of sending him to school already when we know how hard it may be?

I still hope that this is just a blip and within a year he will be going into nursery with his friends shouting, ‘Bye Daddy’. That hope just gets a little smaller after every passing month but it’s still there and I will hold on to it for as long as I can.

Thanks for reading and all your support.

David

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