Receiving an autism diagnosis for your child can be life-changing. Even if you already think your child might be on the autism spectrum, actually hearing a qualified medical professional say those words might make everything move in slow motion for a second or two. In my experience, the words reverberated around inside my head. Autism. Autistic. My child is autistic.
And then the questions begin. Only by then, there’s no one to ask. We were given a few leaflets and websites and sent on our merry way, blinking into the rising sun of the dawn of our new lives. We had questions about how this would affect her schooling, how it might hinder her speech development (already delayed, but offered no extra help with it), and who could we speak to if we had any more questions. We never really got the answers to these.
But, the answers I really wanted to know were more personal. How will it affect her future? Will it change us as a family? How will we cope? We’re only around 20 months into our post-diagnosis journey, but if I’d have known then what I know now, it might have just seemed a little less daunting. Here is a list of things I wish I’d known right back at the start…
1. It will be OK! I would have loved someone to tell me this in those first few minutes. I probably wouldn’t have believed them at that moment, but to know that it had been said and to be able to pluck it from my memory when needed would have been useful. It can take time to come to terms with a new diagnosis, but, for all the ups and downs that might happen, it will be OK. It’s nothing to be scared of. When you stop to think about it, it’s words on a piece of paper. Use those words to make you stronger. Use those words to get the things your child needs. Be empowered.
2. Making decisions might get harder. I’ve always been useless at making decisions; I’m a real fence-sitter. I am always trying to second-guess myself and others, and I’m not good at trusting my gut instinct. Now I have a child with additional needs, I find making important decisions even harder. Choosing the right school? It’s not just about inspection reports and a “nice atmosphere” like when we were looking for our son. Now we have to consider facilities, therapies, suitability to meet her needs, what support they can offer… the list is extensive. Decisions made for a child with special needs are often big ones and can be hard to change if it doesn’t feel right. Lists of pros and cons have become my friends!
3. The diagnosis is not a magic key. People often say that having a diagnosis is the key to getting support and services for your child. Yes, having those words written on official-looking documentation means that there are more options open to you, but you might still have to fight to get these at times. Diagnoses are increasing, but funding isn’t necessarily increasing. Service providers are limited in exactly what they can give, and several families will be fighting for attention. Waiting times are long, appointments scarce, therapies lacking. You will need to shout, and shout loud.
4. I’ve learned more about me. I used to think parents of kids with special needs were superheroes. And they are. But, guess what? They’re just parents, doing what parents are meant to do. They take care of their kids. They do everything parents of “typical” kids do, albeit in a different way, more often than not. Feeding might be through a tube rather than on a plate; potty training might come a few years later than the “norm”; the sleepless nights may well continue well past the baby stage (and may never end!); schooling may be at home; socializing might be in special group settings… Some children need constant care, 24/7 and their parents just get on with it, because, well, what else can they do? And I have learned that I can do this. Even in the times when it feels as though I can’t, I can! I have amazed myself with my resilience at times. I am growing a thicker skin and a louder voice, because we have to make ourselves heard.
5. How fiercely protective I am. I always have been and always will be protective of my kids. But now I am a Mama Bear. Mess with my kids, you mess with me. ‘Nuff said.
6. My daughter will still grow and change. Yes, some things might be delayed, or maybe not happen at all, but she will carry on growing and developing, just as other children will. Her personality will develop, and I believe she will continue developing a great sense of humor and continue being loving, affectionate, and at times demanding. Because guess what? She’s a kid!
7. I wish I had known just how loved she would be, not just by our own family, but by others — teachers, friends, other children. One of my first thoughts was that she might never make friends and, while it seems to me like she might not understand the concept of friendship yet, I just know that eventually, she’ll be just fine.
8. I’ll find new friends. Before diagnosis, you might know one or two other people who have a child on the spectrum. But once you start looking, there’s a whole other world of people in the same boat out there. I find being sociable quite tricky, but I’ve forced myself to get out and go to some support groups. I’ve found new friends online — and, even though I might never meet them in “real life,” I do consider them friends. I can talk to them about things I can’t with my “real life” friends, because they just get it. I’ve even grown some sort of community of my own through my blog and Facebook page. Other parents ask me for advice! You might need to look for them, but they’re out there — your tribe.
9. She will always amaze me. I often find myself sitting and watching her, playing, singing, sleeping, and I wonder to myself how we created this amazing little being. Yes, her brain is wired a bit differently, but how cool is that? The world needs people who think differently, who are different. No matter what, she will always be amazing to me.
10. It’s what makes her, her. I get that some people wish there was a “cure” for autism. I get that life can be tough, and that as parents, we don’t want our children to experience difficulties. But, for me, to take away the autism would be to take away my child. For me, autism isn’t something she has, it’s something she is. It’s a part of her. She’s living in a world that isn’t geared towards her; it’s not her that’s wrong! If she was “cured” of her autism, she wouldn’t be her. I love her just as she is.
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