Letter from Tina

Diagnosis is such a difficult time. It feels like someone just took away all of your hopes and dreams for your child. Everything that you imagined changed in an instant, with those two words: Angelman syndrome. Reading about Angelman syndrome online is tough, that list of characteristics, the prognosis, in black and white, it sounds so cold, so negative, so not what you envisioned. In the beginning, I needed to grieve. Friends wanted to cheer me up, they wanted to show me the silver linings. Sometimes that caused them to say stupid, painful things. I wasn’t ready for silver linings. I needed somebody to sit and be present with me. They didn’t understand that even the “good” things had been taken away from me. “Happy” was one of the traits of Angelman syndrome. Every single time I went somewhere and a stranger commented about how “happy” my child was, it stabbed me like a knife, I had to fight the tears, it was another reminder that my child had been diagnosed with Angelman syndrome.

Diagnosis is a double-edged sword. It brings with it a community that you likely never wanted to be a part of, but a community that contains amazing, wonderful people who completely understand what you are going through, who have resources and answers to your questions. (Sometimes too many answers – take them with a grain of salt – and just like all the parenting advice you got, know that you need to find your tribe within the Angelman community). But the flip side of that sword is that diagnosis can also lower your expectations – sometimes too far – so far that you unintentionally give up on trying something. Just because individuals with AS tend to have sleep disorders doesn’t mean your kid can’t sleep through the night (but they might not). Just because some kids with AS have trouble toilet training doesn’t mean yours will. You get the idea. You need to stop comparing your child to anyone else. This is especially difficult in the younger years, when everything is about those stupid developmental milestones. But keep comparing your kid to themselves. As long as your child is making progress, compared to themselves last month, last year, then they are doing fine. Meet your child where they are at and lead them to the next appropriate level.

I’m not sure there was anything that anyone could have said to me when Finn was diagnosed that would have made me feel better at the time. But I know that one of the things that I was most scared of was that things would keep getting harder. I kept thinking that at least he was little then (he was 18 months old at diagnosis), and as hard as things were, sometimes strangers didn’t even realize he had a disability. I thought to myself that surely, as he grew bigger and taller and stronger, his disability would become more apparent and it would be increasingly difficult to manage. If this felt hard at 18 months, how on earth would I handle this when he was older? Finn is now 10 years old, and I’m happy to report that so far, every single year has gotten easier! Yes, now when we go places it is obvious that he has a disability and the gap between him and his peers continues to get bigger, and he has gotten taller and much stronger. But, he has also had 10 years of life experience, and he continues to learn each year, to communicate better each year, to have more passions and interests and become an engaging and active participant in our family.

We have done things I didn’t think would be possible when he was diagnosed. We have traveled internationally. We have gone sailing, to musicals, to the theatre, to holiday parties. Finn has gone adaptive skiing, surfing and horseback riding. In short, we have kept living our life. It isn’t always easy, it might not always look the way I thought it would, but we have made our own unique family traditions. By the time Finn was a few years old he was doing things that at the time of diagnosis I thought he might never do. To this day, Finn sometimes surprises me and I have to catch myself and remind myself to always, always remember to (1) presume competence and (2) see it, believe it.

Everybody deals with diagnosis in their own way. There is no right way or prescribed reaction. You need to pave your own path, but please reach out to the community when you are ready. And don’t forget that, despite this diagnosis, your child is still the same person they were before. Don’t give up on them, they need you now more than ever. And trust me, our kids are warriors, believe in them and they will reward you with determination and love.


See More Letters