Life with Fragile X Syndrome

Monkey developed a unique way of “tickling” me some time ago.  He would simply place his hand on me and grin, I was expected to shriek and laugh.  It was a great game for the two of us to play but I realized no one else was going to understand what he was doing or what he wanted in return.

A couple weeks ago I decided we were going to teach him how to really tickle.  I demonstrated prime tickling techniques on Duhdee and expected that Monkey would pick it up in time.  WRONG!  He immediately switched to the new method and now he can’t get enough.

He will run up to me try to say “Tickle, tickle” and wiggle his little fingers on me.  Today he instituted he OWN approach.  The sneak tickle attack!  He came up to me and asked for a hug…as soon as his little arms wrapped around my neck though he started saying “tickle, tickle” and tickling my back.

This is just one of the many ways we’re noticing lately that he is taking the initiative, seeking us out and adapting old games in new unexpected ways.  I’m loving (almost) four so far!

I won’t let Duhdee cut his hair short, it would be a travesty to lose these.

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?

Duhdee and I are considering a major life change.  In one of my long winded posts below I discussed the changes that we’re making in our lives and mentioned that one of our long term goals (for when Monkey is grown) is to run a farm/B&B.  We’re now re-thinking this.  We’re trying to decide if we should wait, if there is any real benefit in waiting, to Monkey or to us.

If we move, we’ll obviously be moving to a rural area.  We’re considering Maine, Vermont and New Hampshire with Maine being our first preference but it will ultimately be determined by what we can find.  A rural area is not going to offer the benefits that we enjoy here in Cambridge.  The school system here is not perfect, by a long shot, but it has a LOT of resources that small school systems can only dream of.   But how important is that ultimately?  We also have easy access to the Fragile X clinic at Children’s Hospital and now that Dr. Mike is opening his practice, we’d have easy access to him as well but we can always drive here if needed, we’d be moving away but not to the moon!

I’m not sure that moving would require us to homeschool.  I’m willing to try to have him in school but if the school can’t provide him with the tools he needs to succeed that we’d have homeschooling as an additional option.  I am actually very open to homeschooling because it is my (very strong) opinion that Monkey learns best when he’s most comfortable and he is most comfortable at home with us but I’m not aware of anyone who does homeschool their special needs kid.

If we were to make this change he would have two parents at home full time.  He would be gaining real life skills in running a business, growing food and living in the real world.   He would have space to run and play.  He wouldn’t in all likelihood have easy access to therapists though I might be surprised at what I find.

So how much should this factor in our decision?  I’m looking for all opinions.  Feel free to tell me I’m an absolutely selfish LOON to even consider taking him to a farm 🙂

sweet sauce.

Seriously, I just have the best kid ever*.  This week is school vacation week and he is at his happiest and most relaxed.  Sure there is the whining each night when I get home but that’s only because he has spent the whole day missing me and he’s, you know, hungry.

He and I have come up with a few fun games lately.  One of his favorites is the “Yuck!” game.  He will do something gross, like play in dirt or shove bubbles into his mouth and look at me and say “Yuck!”  Then he watches me expectantly until I too say “Yuck!” and he dissolves into giggles. 

Then there is the game where I lay on the bed and he jumps on my belly saying “Ugh!” Which is a pretty close approximation of the sound I make when he jumps on my belly which in turn makes him dissolve into giggles.

Then there is this OTHER game where I lay, on my back, on the bed and he lays on top of me so we are cheek to cheek and he tells me “Roll!” and I roll over and try not to crush him.  Which makes him dissolve into giggles.

Oh and now that he’s mastered his body parts we spend time each night playing “Head, Shoulders, Knees and Toes” while we lay, on our backs, on the bed.  He plays along for the first three lines but on the final “Head, Shoulders, Knees and Toes, Knees and Toes” I am expected to sing it really super fast which makes him…..oh, yes, dissolve into giggles.

Lord, I just love it when he dissolves into giggles!

*OK, fine, your kids are probably the best kids ever too 😉