Hard times

We love a child with #FASD

by @FASD_Mum

There are times in this journey, when days seem long. There are days when we seem as parents to be unable to help in the way we would like. There are days when it feels like we are making it worse. How do you tell a 5- or 6- year old in a 10-year old body that his brain can’t process information the same way other peoples’ brains work, and THAT is why he can’t explain to you what he is trying to say? That is why the words evaporate before they are formed. That is why he can’t remember the thing he knew just a few minutes ago, a day ago, a week ago. At least not this time.

Frustration is endemic to this condition.  His, ours, his friends, our families. FAS is a hidden disability, and our guy is verbal and capable, and so people forget, we forget. Out in a crowd, people give us The Stare – as in, the what-kind-of-parents-are-you stare. What kind of parents let their child dress like that? What kind of parents let their kid barge around shops like that? What kind of parents buy their kid sweets when he is making such a fuss?

His frustration is basic and real. I would be frustrated too. I would not like to know I am different, to feel that every single day of my life.  I would not like to be The One who everybody singles out, who everyone tenses up around. I would not want to be The One not taking the same tests, not doing the same homework.

And yet, we are learning, even on those days – those very hard days – we can find commonality with a community of people out there who understands.  Through social media we are now able to connect with other families who also have a loved one with FASD. And best of all, we can connect with grown ups who have FASD, we can hear from them that our son may have a tough time, but he can and will grow up to be okay.  Yesterday was a hard time. But I reached out via a Facebook group, and I was able to tell him that I heard from a friend who is an adult whose brain works the same way as his, and this friend had some advice for him, which I shared.

The smile on my son’s face was priceless – like he never knew there were others like him out there. So, hard times are indeed part of this journey.  But at least we are not alone. At least there is hope out there for our son.  At least we are moving forward. They say the only way through a hard time is to go through it.  And then the sun comes up on another day, like today, and we start afresh.

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