Fragile X Awareness... I need more from you.

Hey, did you hear? July was Fragile X Awareness Month!

I didn’t want Fragile X Awareness month to end without saying something though – it’s just been a struggle as to what. I mean, what is left to say? Years ago I wrote Fragile X Facts that continue to be shared today. I share bits of our everyday life – almost daily. Have I said it all? Or am I just a bit burnt out on it all? I’m sure it’s a combination of many things. So, with a few minutes left in July, at least here in Illinois, I’m going for it… I mean, why not?

99% of my friends – in and out of the Fragile X world – can tell you exactly what Fragile X Syndrome is. If you are in that 1 %, a super quick recap would be it’s the leading cause of inherited intellectual disability and the leading genetic cause of autism.

99% of my friends can tell you struggles that come with living with Fragile X Syndrome. If you are in that 1% they would include, but are not limited to, speech delay (we were fortunate it was a delay, some individuals remain non-verbal for life), loose connective tissue, hyper-arousal (super sensitive to all senses – smells, sounds, sights, feels, etc.), sensory processing disorder, low muscle tone, aggression (that’s a biggie), anxiety (another biggie) and cognitive delay.

I’m pretty sure that 100% of the people who know me can tell you every amazing thing about loving someone with Fragile X and their awesome qualities but just to be sure… they have amazing memories, are incredible imitators, they have the best sense of humor, they are compassionate, affectionate – on their terms, and they are always learning. Really, simply put they are pretty amazing individuals, hands down some of the best people I know.

So this is all well and good, and yes, I understand the purpose of awareness month is to help get the word out enough that people who have never heard of Fragile X Syndrome learn about it, hopefully, it will help more people get tested (it’s a simple blood test of our DNA so 99.9% accurate) so they can become educated, find the right professionals, join our awesome FX community and help their loved one reach their maximum potential.

But, I want that every day – all year long. That’s why I write. It’s why I am always sharing about Parker – and Allison – and their journeys through life as both a Self-Advocate and sibling. And here’s the thing, I don’t just want awareness… I want SO MUCH MORE.

Let me clarify. I want so much more … from you. Because I don’t just want so much more – I NEED so much more.

I need you to advocate with me for the future of my son – and this gets scarier every single day. He needs – DESERVES – real healthcare. Real healthcare that is comprehensive and affordable to someone on a very fixed income. Just like you do, he needs this, too. I need you to speak up, I need you to send emails and make phone calls when I put out the information. Because it takes a village.

I need you to be a voice for free and appropriate education (also known as FAPE) and to be sure that seclusion rooms and restraints are not used (or at least used by people who are very, very well trained and used appropriately). I need to know that the school is safe.

I need you to speak up when it comes to inclusion – and guess what? Inclusion doesn’t end when Parker leaves school. Inclusion needs to happen in our communities, in our places of work and worship, in every place that you are – individuals with disabilities should be, too. If they are not – or if someone says they do not belong, I need you to speak up and be part of that change.

I need you to stop using the r-word. Seriously. Stop it. And every damn form of it. Putting another word in front of it and ending it in “tard” is just as insulting so knock it off. And, for the love of all that is left good in this world, stop flipping defending the use of it. If being able to use that word is more important to you that the feelings of other people – I’m just going to say it – you’re a jerk. Stop it. Grow up and find a new word. I’m going to move on before this gets uglier.

I need acceptance. Accepting Parker means accepting him ALL of the time… mid-meltdown when you are truly concerned that he is going to hurt me, through the colorful language he learned from “friends” at school – trust me, he can swear better than you and no, I’m not happy or proud, through the shirt covering his face  in public (or at our house), through it all. You can’t just accept him when he’s happy and having a good day – or moment. You have to accept him all of the time. Not because I said so but because that is how he accepts you. Unconditionally.

I need research and I need it funded. Research is more than a cure. Research is effective treatments and therapies. Research is life-altering in the best ways and we need it now more than ever. The gains in research have been tremendous, absolutely tremendous but there is so far to go and it is expensive. Most of all, we need it. For more information on the latest research in Fragile X visit: www.fraxa.org

Fragile X is our every day which means awareness is our every day. Some days its fun and others it is exhausting. I can’t just go out to dinner or to the store and not be prepared to respond to comments, looks or answer questions. I’m “on” 24/7. I don’t have a choice. It’s part of who I am and most of the time, I like that part of me, other times, I just want to go to the store or out to dinner with my son without having to be on guard ready to fend off glares and comments. We just aren’t there yet.

Awareness is more than a color. It’s more than sharing a post on social media. It’s more than a donation (although those make a tremendous difference so please, keep making them!). Most of all, it’s more than a day or a month. It’s part of life…my life… and I hope… yours too.

Also, it’s technically August here in Illinois now, so… let’s go make a difference and keep the awareness going – because it DOES make a difference, especially when it’s part of who we are.

And if you think you cannot make a difference… read this, The Starfish Story by Loren Eisley. Everyone can make a difference, all you have to do is try.