Wednesday, November 11, 2009

Comparisons are just getting weirder and harder all the time

Of course I know I "shouldn't" compare Quinn to other kids. Of course. He's his own little person with his own special gifts (like his adorable laugh and contagious joie de vivre). But frankly, it's just getting weirder and harder all the time, and I fear the comparisons will only become more stark and obvious as time goes by. Intellectually, I understand why this is. The gap between Quinn's and typically developing kids' abilities will widen because his rate of development, like most boys with Fragile X, is about half that of (give or take) other kids.

Today we tried a new play cafe. It was fun, and a special treat for Quinn and I since I'm usually working when all the cool play cafes are open. Quinn loved the ball pit, different fireman hats, and puppet theater (for playing peekaboo with the curtains).

It's just shocking, though, to see kids literally half Quinn's size and age, talking, running, jumping, going up and down stairs with ease, and engaging in what looks like very sophisticated pretend play, all of which are things Quinn cannot do yet. I know he will be able to do these things eventually, but there will be a point where other kids will start doing things that Quinn will never do.

It's also socially awkward because people seem to do a double take as my relatively big kid needs help with so many things, doesn't talk, and plays peekaboo with mom for a looooong time while other kids run off to play house in the pretend kitchen.

I also felt a bit jealous of other parents, sitting calmly drinking coffee for at least 75% of the time, while I'd say my sit-to-redirect ratio was more like 25% sitting, 75% redirecting. Most of the other kids didn't need to be told 5,000 times (in one hour) that the toys are "not for your mouth" or that you cannot just sit on other kids or touch their faces (Quinn seems oblivious to these social norms that other, much younger children, seem to get). Other kids didn't fall twice, bite their parents, or pull their parents' hair. I kind of get it why we are so tired and stressed.

And this was not at all a bad time for Quinn and me. This was just a normal time. Not a stellar, Quinn-as-superstar time, but not a bad time, which is much worse than what I've described above. This morning was what most activities with my little guy are like.

I can't imagine what it would be like to be out, sitting at a table drinking coffee, for at least 20 minutes while my kid played without incident. My favorite "other parent" example involved another mom, relaxing at her table, when her two-year-old (I know her age 'cause the mom told me) brought her a pretend pizza to eat and said "Pizza, Mommy." The mom said, "Thank you! I love pizza! Can you bring me some parmesan cheese to put on it?" The little girl ran off, happily, and was gone for another 10 minutes. Wow. So many things going on there that are way beyond Quinn's abilities. If this happened to me, I'd probably jump for joy and order a round of cappuccino and chocolate milk for everyone.

I know...I'm whining. I'm a lucky parent of a terrific little guy. But it is tough.


Zachary Drake said...

Yes, it's sad. As most kids grow up, they become easier and easier to supervise because they increase in ability to follow directions and obey social rules. But Quinn advances very slowly in these things, yet has reached the point where his physical ability to get into trouble is almost limitless. And this will not end for a long, long time.

And Quinn's ability to "pass" for normal is decreasing all the time. We must prepare ourselves for a lifetime, of quizzical stares, disapproving looks, and rushed explanations.

And at the same time, we must forge a happiness that includes all of this, that does not blot this out but does not let it blot out everything else.

It will never be fair. It will never be normal. But somewhere in this our happiness is hidden. I just haven't figured out how to get at it consistently yet.

the other lion said...

You are not whining, you are being honest. If you told me it didn't bother you, I wouldn't believe you.

I promise it will get easier. Not that Quinn will magically get better or will be able to follow 4-step directions overnight, but dealing with the whole package will get easier. It will. Just take it one day at a time.

The more you take him out in public, the more you have to deal with "the public" and the easier it gets to deal with the stares. Or rather, ignore them on the days you want to ignore them and educate them on the days you want to educate. Or be snooty, you know, whatever. =) Sometimes it's warranted.

It is exhausting. REALLY, REALLY exhausting. No one else can understand it the way we do. I just want to acknowledge that for you.

It is also somehow miraculous. The day he brings you a pretend pizza will be miraculous.To most moms, it's commonplace. When Punkin brought me pretend pizza, I cried. The pizza -- that's your joy. Those moments.

Sarah said...

Zac, I really like your note about not blotting all this out, but not letting it blot everything else out either. And thanks, Erika, for such an understanding response. The empathy is much appreciated.

Holly's Mom said...

Sarah, I totally sympathize with you. So far I have been lucky with Holly for the most part, and her developmental gap is not as wide as Quinn's. But she is 20 months hanging out with 15-17 month olds who are talking already, and advancing in language, repeating in leaps and bounds, so even though others aren't noticing, I am starting to.

I just read a regular parenting book called "the Emotional Life of a Toddler" and there was a chapter about the "Active Toddler" one who is motivated by movement, puts everything in his mouth, runs and climbs and falls, is delayed in speech, whose mom has to chase her around for safety 90% of the time while the other moms sit with there coffee, and wonder, is this mom thinking I am a bad parent who should "Tame" my wild child.

Reading this, it was nice to feel like a regular parent of a NT kid who just had a difficult temperment, and realize that I am not a bad parent, and that other parents of calm well behaved kids simply have no clue.

So I totally identify with your 75/25 % ratio, Holly fell twice off the stairs to the ball pit at Play Cafe (which we love) But there are so many toys there that were just not age/developmentally appropriate for her, everything in her mouth, choking hazards, and Mommy sitting chasing much more then sitting.

I admire you and Zach and what you are going through, I try so hard not to compare Holly's language development with her friends, but it is so hard, sometimes I am so proud of her accomplishments and progress, and then it all gets shot in the water when I see her friend do something so simple and easy for them, but so far from Holly's ability now, and it makes me sad and frustrated, I was to always be proud, I want to never compare, but sometimes it is so in your face, how can you not?

Thanks for this post. While I know your struggle is so much harder, then mine, know you have support and friendship out there.

I just want to add, re: Zach's comment, I agree the hardest part must be Quinn's physical development giving him the ability to "get into trouble" but not having the cognition to limit himself. Holly is just beginning to do those things, climb onto counters and table, I think that challenge is one that scares me the most, so may ways for her to hurt herself that she just doesn't understand, I mean seriously How many times can 1 child bump her head when under the table and not learn that she can't stand up when under there? You Know!

the other lion said...

The physical part is hard. Punkin runs away all the time. Less now that he's on Ritalin, but he still does it. He knows how to open the door to his classroom, run down the hall, and opens the double doors to the school. They are very heavy doors, but he's strong enough to do it.

Emotionally it gets easier because you learn to accept. Physically it gets more demanding.

ashindi said...

Hi Sarah! You are so not whining. I'd also be worried if you weren't expressing that what you're doing is HARD. Have you read "Peace is Every Step"? Even if you have actually, it could be a good book to go back to. Zac's comments on knowing your happiness is hidden here somewhere, and your about appreciating all the simple things made me think of how (when I was teaching) we used to call our most challenging kids our zen-masters. There's so much in that.
I've also become super conscious lately about who my validators are. Whose opinions do I care about? And, maybe even more important, whose opinions don't I care about? In this case, anyone who is judging you or Quinn for his behavior hasn't earned the right to concern you with their opinions. I really know this is way too easy to say, but it has been a really helpful thought process for me.
I also just remembered a BART ride from the airport years ago with a mom and a little boy who might have been autistic. He talked very loudly on a quiet train and she couldn't keep him in his seat. But his observations were also really amusing. At some point, I shared a smile with another woman who was also noticing the little boy. The mom noticed the exchange and her face tightened. I've remembered it ever since because I was so sure she thought we were judging her, sharing our annoyance about her son. What I was actually thinking when I smiled was that I was amused with what he was saying and that I empathized (for me, from being a teacher) with what a hard time she must be having. Unfortunately, I didn't say anything to explain and she will never know that.
Sending love Sarah!

M said...

Hi Sarah & Zach,
My son was diagnosed with Fragile X in July, my wife and I are still reeling from the news. I've been lurking your blog for the last 5 months, I feel like it is a glimpse into our near future. Both my wife and I are battling with depression and I hope it does get easier, but I'm worried.
We have a lot of hopes pinned on the MGlur5 antagonist drugs that could supposedly reverse the cognitive deficits of Fragile X.
Have you been to see Dr. Hagerman at the MIND Institute at UC Davis? We were considering coming out but we live in New England and it would be quite a trip.
Thanks for your blog, I've read every entry and can identify with so much.
All the best,

Sarah said...

Thanks for the great, sympathetic, wise comments, Vicki, Ashindi, and Erika. Ashindi, interestingly I just bought a second copy of Peace is Every Step and gave it to Zac, and he felt it helped him when he was so depressed! I should re-read it myself. : ) Though I do think about that book often while washing dishes, sitting at red lights, and answering the phone!

Mark, thanks for visiting the blog and commenting. How old is your son? I know, sometimes the "future" is hard to face - we read the blogs of some parents of kids who are in their tweens or teens, and frankly, we get scared! But I guess all we can do is stay in the present, and deal with what's happening in the moment. We have been to the MIND Institute, and actually we're going again next month. We are open-minded, but skeptical, about the likelihood of treatments "curing" our son. I just think the research is so new, and the mind is so, so complex, I have my doubts that there will be something safe and reliable available soon enough for us to take advantage of it. On the one hand, the mind had incredible neuroplasticity, and that gives us hope. On the other hand, early childhood experiences are really, really formative. So I guess we wonder, if a treatment that appears to work and is safe is available when he is, say, 10 years old, will it really work? And I don't think anyone knows the answer to that question right now. I also am really concerned about safety and side effects. I try to remember that this is not really Quinn's problem - it's my problem - meaning that Quinn is happy and does not know there is anything "wrong" with him. He is also very healthy. So I worry about the ethical implications of changing his mind and/or body chemistry for my benefit.

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