Something Resembling Normal

Every now and then I rebel against accepting Fragile X Syndrome's place in our lives, and decide I want to do something that other families do all the time. Once in awhile it's nice to feel something resembling normal.

I just read a fantastic book, January First by Michael Scofield, and in it they try to go on a family picnic. A totally typical family summer outing, made difficult by the fact their six-year-old daughter has schizophrenia and her behavior is often violent and unpredictable. But, as the author explains and I really related to, sometimes you just want to do SOMETHING that normal families do. Just. One. Thing. It didn't go well for the Scofields, and I have many memories of our own family outings that ended similarly.

Regular families go to parades, and Aliza, being a regular kid, loves parades. The noisy fire trucks and booming marching bands, the summer heat and the crowds of people - it's an American tradition, and at the same time, sort of a nightmare for two little boys with Fragile X. We constantly battle between protecting the boys from things that will be difficult and outright painful for them, and encouraging them to leave their tiny, limited comfort zones and have new experiences.

It's a fine, fine line, people.

My friend's daughter Elle was in a parade yesterday with her dance group. Just like Aliza was last September, and will be again two weeks from now. And watching Elle yesterday and  Aliza next month, participate in a parade is something I really hoped the boys could manage.

While a big crowd is always a challenge for them, being outdoors helps a lot. The boys almost always do better with outside activities, as long as it's not too hot. There's really no way to minimize the noise since they have been unwilling to wear headphones, but Zack manages just fine - he shoves an index finger into each ear. He sits like that sometimes even when there's no real noise. I think he likes how it feels.

And I figured, AJ handles noise and crowds better than Zack does, so if we can get Zack through it, we're probably 75% of the way toward success.

So at the parade yesterday, every time something loud came by, I put my hands over AJ's ears. The first few times he let me, and then he stopped me. I guess the noise wasn't bugging him that much.

Both boys sat through most of the parade. Zack stared at the iPad in his lap the entire time, but he tolerated the parade for around two hours. And AJ even seemed to enjoy bits and pieces of it.

Now of course, they weren't up at the curb with all the other children, racing out to snatch up the candy the paraders tossed their way. They don't have any interest in candy (a blessing, really, considering their aversion to brushing their teeth).  But they stayed, relatively willingly, in the vicinity of our lawn chairs and even watched a few of the parade floats and this go by (well, AJ did). 

For awhile, it resembled normal.  Which is good, because in two weeks we're going to try it again for the Burnsville Fire Muster parade.

Cuteness

It's a well known fact that Fraggles (kids with Fragile X Syndrome) love playing on escalators. If you didn't know before, you do now.

So yesterday, after running an errand at the mall, we took a few trips up and down the mall escalators. Great fun. Until Zack took a tumble and gouged a hole in his right knee.

You might have heard his screaming, if you were anywhere in the vicinity of south Burnsville.

We hightailed it out of there. On the way home, Zack alternately cried, rubbed his knee, and then rubbed his bloody fingers all over his face. He blotted at his knee with his stylishly long shorts. By the time we got home he looked like a child from a horror movie.

We wiped away all the blood, slapped on a big bandaid, changed his shorts and went on with our day.

Have I ever mentioned AJ's obsession with bandaids?

Oh yeah, he loves them. Any tiny little scrape, and he's coming up to point out his injury and ask, "bandaid?"

He spent some time admiring his brother's newest accessory. He tried to pick it off several times.

Later, yesterday evening, after staring longingly at Zack's knee, he looks somberly at me. "Bandaid?" he asked.

"You need a bandaid? Where? Show me where you need a bandaid." I said to him.

"Here," AJ says quietly, seriously, pointing at his right knee. His perfect, knobby little, blood-free knee.

She Says the Darndest Things

Remember that show "Kids Say the Darndest Things" with Art Linkletter, where he'd interview kids and they'd all say outrageous, hilarious things?  The best was when they'd say something that you knew had to embarrass their parents.

If you don't remember it, it's because that show is from back when there was no color in the world and everything was in black and white and tones of gray, as evidenced by the black and white pictures and movies and TV shows.  You know what I'm talking about.

Sometimes I email funny stories about the kids to my mom, and she in turn sends them in to the editor of the Bulletin Board column in the St. Paul Pioneer Press.  Bulletin Board is a collection of random human interest stories, sent in by readers.  Both these stories about Aliza recently made it into print.

A couple of weeks ago I was putting away clothes, and I brought a pile into Aliza's room for her to put away.  I take them out of her room, wash, dry, and sort.  All she has to do is hang them up or stuff them into a drawer.  I really don't think I'm overworking her here, but feel free to disagree.

I went in a few minutes later to check on her progress and she is only on her second or third shirt, sighing heavily.  "It's like yesterday was my last day as a kid," she declares.

"Why is that?"  I ask, I must admit unsympathetically.
"Because I'm having to hang up my own clothes."

At NASA, last June.

The second story occurred just about a week ago.  Aliza and I were headed out to the American Girl Bistro for dinner, just her and I.  It wouldn't have been my first choice, but I let her pick.  I was intending to tell her about her premutation carrier status.  I found out actually a couple of years back that she is a carrier of the Fragile X gene, but I hadn't told her yet.  I took some time to deal with that this meant for her future, and at the International Fragile X Conference last month, I decided I really needed to have this talk with her.  She is old enough to understand and I was beginning to feel like I was keeping something from her.

So I planned for a mother-daughter dinner, and allowed her to pick her favorite restaurant.  She likes the American Girl Bistro because you can bring your doll along and she sits at the table and has a tiny, doll-sized meal and drink and dessert right along with you.  It's adorable.

Anyway we left the house distractly, and realized halfway to the Mall of America that we had forgotten to bring along one of her dolls.  She looked like she was going to have a breakdown.  I did an internal eye roll.  Oh good grief.  Was this going to overshadow our whole meal and chat?

Then I remembered something.  "You know, you can borrow a doll there, to sit at the table and have dinner with us."

It's true.  They have a whole shelf full of dolls in little pink highchairs that you can pick from.

Aliza looked doubtful.  "Well, it'll be weird, having dinner with a doll I don't know," she replied.

So she and I took a stranger doll out for a blind date.

And our talk, about her carrier status?  Completely uneventful.  It was literally about 90 seconds of our whole hour and a half dinner conversation.  She wanted to know what it meant, and I told her that right now really, it didn't mean anything.  I told her when she's older it could mean that she'd have kids with Fragile X too.  And she shrugged her shoulders at that.  I am raising a child who, so far, thinks that having a kid with Fragile X is not a big deal.

Going to have to think about that one.

Comparing Apples to Apples

You know how they say you shouldn't compare your child's development to another's, because all children develop at their own speed?  Which is a total lie by they way, because of course there's a standard by which children are expected to have reached certain milestones.  How else would they come up with what is standard and "typical," without comparing?  How else could they determine who is "developmentally delayed?"

Sorry. Tangent.



Cartoon source

I love this cartoon.  It's ridiculous to expect a dog, a seal, a fish, an elephant and a penguin to be able to climb a tree, right?  Just like it's illogical to expect every person to be good at the same thing, right?



Note the x in the clouds...

Except that humans are all the same breed of animal.  A more true-to-reality cartoon would depict a bunch of monkeys being tested on their ability to climb a tree.  A few monkeys not being able to climb a tree wouldn't be nearly as illogical and therefore not as funny.  Some of those monkeys might be better at digging holes though, or balancing rocks on top of each other.  And they need to be recognized and valued for what they are good at.

I understand what this cartoon is trying to say.  And I'm sure I've spent more time thinking about this than the average (non special needs) person has.  I like the point it's making, and it makes that point very well, for anyone who doesn't sit and think it through too thoroughly.

Anyway, as a parent of children with developmental delays for several years now, you'd think I'd be better at not comparing them to other kids.  After all, I've had almost six years now (since their diagnosis) to get used to the idea that my boys won't be keeping up with the standard timetable for reaching milestones.

It never stops being sad, though. I'm not losing sleep and bawling real tears over the fact that their four-year-old cousin is potty trained, and my seven-year-olds aren't.  I'm not.  But I'm aware of it.

And this is how it's going to be forever, isn't it?  All throughout their lives, am I going to keep mourning what isn't?  Is it ever going to be acceptable to me, that my Zack and AJ don't keep up with standards of development?  I struggle a lot with acceptance.

And it's not even just typical kids.  I compare their development to other kids with Fragile X Syndrome.  I have the benefit of belonging to an online community full of parents of kids with Fragile X of all ages and varying developmental abilities. And when I read that a two-year-old with Fragile X is saying some words, I picture a line scale, where mildly affected is on one end and severely affected is on the other.  And I adjust where my boys fall on the scale based on what I hear from other parents.

My boys didn't utter an intelligible word until they were four.  A kid with Fragile X who is talking at two is obviously more mildly affected.  A kid with Fragile X who is talking at two, heck, he will probably be mainstreamed.  Might be able to keep up with his peers.  Play soccer.  Have friends.  He'll understand how to socialize.  The possibilities for that kid are endless.

I see miles of potential for that kid talking at two, Fragile X diagnosis or not, that I don't see for mine.

It's worse, comparing them to other kids with the same syndrome. Obviously it's not fair to compare them to the typically developing children. That's apples and oranges.  Those differences aren't as difficult to see.  Comparing them to other kids with Fragile X Syndrome though, those kids are the same. Apples and other apples.

Do the rest of you moms of kids with Fragile X do this? Do you get sad at things your kids still can't do, that you hear about other Fraggles accomplishing?

My Favorite Moments from the Minnesota Fragile X Picnic

Our second picnic went so well! I really feel like we are getting a cohesive group together in Minnesota. It's very exciting to see people come together and feel such a close bond, almost right away. And there's so many more of us than I thought, back when the twins were first diagnosed. I think I went a year after our diagnosis, before I saw another child with Fragile X.

It doesn't feel as rare, anymore. When I meet new people and have to explain the boys, I tend to say they have "Fragile X Syndrome?" I say it in a questioning tone, because I expect that the person I'm telling won't have heard of it. Well, I decided this weekend, I'm not going to do that anymore. I'm going to say "They have Fragile X," matter of fact, as if it were as common as autism and I expect everyone to be aware of it. We aren't as few and far between as we used to be.

Mother Nature decided to grace us with a gorgeous day on Saturday. We couldn't have hoped for more.

Here are some of my favorite moments from this year's picnic:

• When Mary discovered her son Dan was featured in the NFXF Annual Report - the Annual Report that probably went out to hundreds of people, and she had no idea they featured a little paragraph and photo of her son.


• When Tammy, mother of four children with Fragile X, met Sue, mother of two sons with Fragile X, and realized that Sue was the very first person she talked to, fifteen years ago, when Tammy's first son was diagnosed with Fragile X.
• Introducing Desirae Rambeck, from the Minnesota Fragile X Clinic, to the group and then seeing everyone have a chance to talk to her personally.
• The huge laugh we had when I tried to talk Tammy into borrowing a book, and she absolutely refused because the last time she borrowed a book from someone, her son ate a page out of it.


• When a bunch of the kids were fascinated, predictably, by the water spout.

• When AJ started waving the bubble wand around in the air to make bubbles, deliberately, for the first time in his life.

I love this group.  I went home exhausted but thrilled that it had gone so well.

56 Degrees

It's been a long, hot summer.  We barely held on.



But we made it - the humidity has broken.  It's 56 degrees this morning, and guess who is completely calm and not biting, at all?

Zack.

I spent all summer thinking, is it really the heat?  Or could it be something else?  Some allergy?  Some vitamin deficiency?  A fabric sensitivity?  I don't think so.  The relief Zack feels when the humidity and heat dissolve is obvious.

(And Zack's calm demeanor this morning is the reason I have time to sit at the computer and type this up!)
I have tried brushing Zack a lot - a couple of hot, humid weeks ago Zack's occupational therapist at Courage Center suggested that maybe he needed more brushing.  So I had been doing it every day, several times a day, up until yesterday when Zack abruptly grabbed the brush out of my hand and threw it across the living room.

I'm trying to love all this time with the kids, but like every summer before this one, by August, we've done it all. All the summertime fun-ness has been had. Every park looks just like the one we were at last week. Swimming is still fun, but we are done with it in less time than it took to pull swimsuits on.

Aliza comes running every time the mailman comes down our street. Any day now, the letter revealing the name of her teacher will arrive.  It's almost that time.

One thing that blows these summer doldrums right out of the water, though, is the love and kindness of neighbors.

Our neighborhood has always had a party for National Night Out, now known as Night to Unite.  This year, though, the lady who coordinates it couldn't do it, and no one stepped up to take her place.  A lot of the kids were sorely disappointed, my own daughter included.

So a couple of moms decided to throw a party next week, a belated Night to Unite.  We are gathering in a neighbor's driveway, and they are going to sell root beer floats for $1, and the flyer says they will donate the proceeds to the National Fragile X Foundation.

I'm always surprised at how touched I am by things like this.  Unexpected gifts.

Our boys aren't out and about the neighborhood much.  I try to get them out, but they don't mix well with other kids.  It takes a lot of effort to get them to even be in the same driveway as their peers.  Especially when it's 100 degrees and humid, and Zack would just as soon sit down and bite the skin off his legs.

At least he's only biting himself.

Anyway, part of what's so nice about this is the fact that I'm always wondering just how much our neighborhood knows about Zack and AJ, and their disability.  It's hard to be out, but if we aren't out, we can't expect anyone to know or understand them.  I always tried to bring them out to the Night to Unite party, at least for a short while.  I missed being able to do that this year.

Evidently, they understand much better than I thought they might.

H2O therapy

Oh my little Zack.  He still can't stop biting himself. Some days are worse than others, but basically, he seems to chew on his arms and legs ALL DAY LONG.

I hope it's weather related, because changing the dose of his trial medication didn't help, and no amount of brushing or massaging or pressure-giving I do seems to make much difference.  My only hope is that when the weather cools down, he'll feel some relief.

I think it's just a skin sensitivity (or lack of?), and not an oral need -- meaning, I think he's doing it to relieve an uncomfortable feeling in his skin, not his mouth or his teeth.  Because when I put my arm in front of his face so he can't bite himself, he giggles nervously, but doesn't really bite down on me.

Sometimes I can distract him with the pool and bubbles, but not for long.  So sometimes we walk down to this rock water fountain near the Civic Center, right down the street from us, and they love to play in the water there.

A plain old shower actually works pretty well for water therapy too, but the pictures are better at the rock fountain.

 

I guess the biting and sensory problems are something to talk to the doctor about, when we see her in two weeks.

I wonder if some of it is sensory and some of it is anxiety.  It's hard to tell sometimes.  Zack is kind of nervous and jittery all the time, so it's hard to say.  Maybe the anxiety is caused by the sensory problems.


It's always a guessing game.