How has Fragile X Syndrome improved my life?

As I was sitting here reading through my past FX Memories posts looking for inspiration, it struck me that my posts, though not entirely negative in tone, are memories of how Fragile X Syndrome has impacted our lives negatively in the last 2 years. That does not match with my feeling that our lives are, for the most part, pretty darn good.

So I asked myself…how has Fragile X Syndrome improved my life? My initial thought was, “It hasn’t.” When I look at Monkey on a daily basis, I don’t see a boy with FXS. I see my curly haired, loving, clown of a son. When I look at Monkey and I am specifically thinking (or more accurately fretting) about FXS, I see the boy first but I also see the “real” boy as being buried under the anxiety. I see FXS as a barrier that keeps most people from seeing what I know is the “real” boy.

But, I have to give more thought to that last sentence because it’s really not true. It can’t be. So many people love Monkey. Even evaluators who only see him briefly, under the most stressful of circumstances, comment on what a happy little boy he is. People who see a bit more of him find him even more engaging. Our neighbors all love him. He develops a fan club just about everywhere he goes. So clearly FXS isn’t the barrier that I tend to imagine it to be.

I know that there have to be ways that FXS has improved my life. Let me see what I can come up with.

1.  It has made me a more thoughtful parent. I was a fly-by-the-seat-of-my-pants kind of mom, now I actually develop plans and set goals.

2.  It has made me a more educated parent. I get to spend time with some of the most amazing and well educated people. I have access to behaviorists and doctors and therapists who are all full of great ideas, any parent would be lucky to have this sort of team.

3.  It has made me a more attentive parent. Monkey isn’t verbal. He has a few words but he uses mostly signs and approximations of signs and words. We have to be very attuned to him to really get what he’s trying to communicate.

4.  It has freed me from the hyper-competitiveness of parenting. I am uber-competitive by nature so I would have been one of “those” moms and most likely miserable!

5.  It has made me less of a hypocrite. I can’t follow the “do as I say and not as I do” school of parenting. I have to be the kind of person I want Monkey to be. That’s tough, let me tell you!

6.  It has made me more compassionate. On Monday, we witnessed a child laying stretched out on the sidewalk tossing a hissy fit of massive proportions. Of course the first thought was, “Thank god it’s not my kid!” but there was no judgment of mom. There was no “Can’t she control her kid?” because I’ve been there. Well, not on a sidewalk in downtown Boston, but close enough.

7.  It has made me appreciate the little things. I’ve learned to celebrate even the tiniest of improvements. Major milestones are great and all but there is so much to be celebrated in between that I might have otherwise missed.

Dang, look at that, I thought I’d only come up with 2 or 3! I am sure there is a lot I’ve missed too, anyone want to add to the list?

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