Fighting for Lexi
By Stephen Ford | Published on January 26, 2021 | 6 Minute Read
Autism. It was nothing but a word to us until our daughter, Lexi, was diagnosed as Autistic in the summer of 2020 at age 6, during the first Covid-19 Lockdown. She was also diagnosed with Sensory Processing Disorder and displayed traits of something called “Pathological Demand Avoidance”. I was shocked, upset and full of guilt - all I could seem to do was blame myself. As a man, when you're faced with tough situations, you're supposed to be able to deal with them. And since this was something that I couldn't fix, I felt utterly powerless. I turned to anti-depressants and I slept a lot just so I didn't have to deal with it.
Because it was the first Lockdown at the time, we were basically abandoned by the services and everything was done over Zoom or by questionnaires that were posted out to us. We had no help and absolutely no understanding.
You pray every day that your child will never have to go through all of those endless waiting lists and referrals. That they'll never need help that badly. And then one day, you find yourself in that exact position. You find yourself fighting harder than you ever thought you would have to fight just to get people to notice how much help she needs. You sit and listen to your baby, at only 6 years of age, screaming that she wants to die and that she's going to kill herself. And all you can do is cry because you don't know what else to do. It's like you're frozen in time, just being made to stand there and suffer through it all. Then it's over and it's hugs all around, and while your child instantly forgets about what just happened, you're forever haunted by it. Nothing can ever shake those bad memories away.
"I accept that the system is broken, but I do not use that as an excuse to stay silent."
As time went on, Lexi started to get better and then started to deteriorate pretty soon after. It's a constant back and forth from one week to the next and you just never know what to expect. You can't wrap your head around all the waiting lists and the referrals and the fact that no one of importance seems to care about your child's life. It's left to you to buy the books and Google the terms and listen to the Youtube talks - that's where most of what you learn about how to cope with your Autistic child is taken from. And other parents with Autistic kids, they can be brilliant too, always supportive and always helpful.
Lexi is starting Play Therapy soon and we hope it helps her. Because lately, her anxiety has gotten severe. I've had to watch her sitting on the ground rocking back and forth before going to school, and the whole time I'm thinking of all the people who told me things like, "Lexi's needs are beyond what we can provide" and "We know this must be tough on you", but they'll say it with a reassuring smile like they know what you're going through and pretend that they care. But they don't. They're just telling you what they think you want to hear. I've accepted that as Lexi continues to go from bad to worse, that the system will not help her. We are the only ones who will help Lexi, her parents. But that sure as hell won't stop me from speaking up every single chance I get. I accept that the system is broken but I do not use that as an excuse to stay silent.
Don't get me wrong. Learning more about Autism has been tough and also beautiful. I think we've become better parents in the process of trying to understand Lexi more and how she thinks and what she's going through. It changes your whole view of the world, I mean the REAL world. It turns you into a fighter if you weren't one already because no one fights harder than parents who know about real struggle, parents who have seen their kids struggle or suffer - you become a warrior. I know I've become a better dad in the process, a more accepting and understanding dad, and I know I'll continue to grow. But I will never stop fighting for Lexi. Never.
About the Author
I am Lexi's dad, best friend, and full-time Carer.