(And 23 days if you really want to get all specific about it.)
On facebook I am part of two Fragile X groups – one simply called “Fragile X” and the second is called “Fantastically Fragile X” and is meant to be a brag room, a place to celebrate milestones and happy surprises by our Fragile X kiddos.
Recently it seems I’ve read a lot of posts from parents waiting on a diagnosis and wanting to find out more about FX during the wait time (Ug. What an excruciating time.) or parents of young kids whose diagnosis is quite new. Often, in these cases their kids are 2 ½ to 3.
Parents of FX kids naturally want to know what other FX kids can do. The magazine articles and emails (There’s one in my inbox right now: “Your 3 ¼ year old, The Art of Conversation” These things are NEVER going to stop are they?) are no longer the right reference points. So we form our own groups, take a look around, get nervous by some profiles (anything but seizures, anything but a ten year old still in pull ups, anything but…) and reassured by others (he’s so cute, she’s going to college, he can ride a bike…). Good or bad, hard or less hard, it’s better to know. After all the whole point of chasing after the correct diagnosis is to know, and then have the group who also knows, the group where you finally fit to serve as a new source of peers to grow, vent, struggle, process, grieve, and celebrate with. Right?
So for the newbies, or for the just curious, here is what Fragile X at three can look like:
Stinkin’ cute, huh?
Toby, at three, is developmentally delayed. He has issues with anxiety, aggression, and hyper-arousal. He is always seeking sensory input which often means he is chewing on his own fingers. He’s hyperactive. He is delayed in speech and motor skills. He can’t jump with two feet or walk on a balance beam yet. He is neither fully potty trained nor fully self-feeding. Sometimes he does not sleep through the night. He has been described as “cognitively disorganized.” In a testing session before his third birthday he scored in the bottom 10th percentile for kids his age in auditory comprehension. In this same testing session he scored in the bottom 16th percentile for expressive communication.
Wow. That’s a pretty depressing profile, huh? If I dwelled too much on that paragraph I might just start feeling sorry for myself.
How about this one:
Toby, at three, is an adorable boy who loves animals, swimming (and he’s turned into a real fish!) and Phineas and Ferb. He gets shy in new environments. Sometimes he’s up for it, sometimes he shuts down. It can be hard to predict. He’s a hard shopping partner so I have to pack snacks and a “busy bag” if I want to get anything accomplished at the grocery store. He uses the potty sometimes, but he’s still in pull ups. He is capable of feeding himself successfully with fingers, spoon, or fork, but he views food as sustenance and entertainment in equal parts, so to save myself the mess I often still feed him. He usually sleeps through the night. He loves playgrounds and has become a good climber. He likes to put things in his mouth so I keep chewies everywhere to keep him from biting his own fingers. We do lots of “squeezies” throughout the day (tight hugs provide deep pressure and sensory input) to help avoid meltdowns. He follows directions but only when he wants to. He loves to sing and he is a total chatterbox, although sometimes he is hard to understand.
Well now, that could be any three year old, couldn’t it?
Soooooo excited about the bear! Up close! And swimming!
I never, ever, EVER want to lose sight of Toby, because I’m paying too much attention to symptom lists and testing results.
Ok, now let’s break all that up into categories that typically affect FX kids:
Toby is not currently taking any meds. He has never taken any prescriptive meds. In the past, because it was recommended by other FX parents, I supplemented his food with curcumin, but it’s hard to say if it had any positive effects. Currently I put Bach’s Rescue Remedy for Kids in his drink about 3 times a day. Also, hard to say if it’s had any impact, because although he has calmed down a lot since I started giving it to him, that timing coincided with the end of summer and the return of a routine.
Now that Toby is three, I am open to Toby taking a prescriptive med, but would like for him to be seen by a developmental pediatrician who specializes in FX to help make this decision, and that’s not in the budget right now.
I’ve heard that lots of FX kids are severely fussy eaters and have a menu of about four things. Not Toby. Not at all. He will and has out-eaten many a “typical” three year old.
He’s messy. If given too much at once he will stuff way too much in his mouth at once in spite of all our “one bite, wait, empty mouth first,” reiterations. If he eats too much or has something too exciting happen to him too soon after eating he will throw it all up.
Woo-hoo! Family vay-cay dance party with the cousins! (And then about 30 minutes later when we went down to the pool - blech. Up came dinner.)
Toby started sleeping through the night around 16 months when I fully weaned him from nursing. For about a week at that time when he’d wake up, Daddy would go to him so Toby knew he wasn’t getting anything. Then he started sleeping through the night just like that.
Except when he doesn’t.
And he often doesn’t on trips.
And randomly about once a week.
There are seemingly no predictors to these once a week wake-ups. There are also seemingly no predictors as to whether or not one “go-back-to-bed” will do it, or it will be an up-for-hours kinda night.
But MOST nights he gets put to bed between 7 and 8pm, falls asleep between 8 and 9pm and sleeps till some time after 6am. And since that happens most nights, I’m not too worried about it.
As far as naps go, he gets put in his bed and left in his room for about an hour every afternoon, but as soon as I close the door he promptly hops up and does who-know-what (no video monitor). As long as he stays in his room, I don’t care. Unfortunately he has started coming out after 20/30 minutes and now Mommy has no mid-day break because the rest of the hour is spent putting him back to bed and reminding him, “it’s rest time.” Then, in the late afternoon when we have to go pick up his brothers from school, he promptly falls asleep in the car.
Over-stimulation / Hyper-arousal: When Toby is over stimulated he scratches and hits. Unfortunately for me I’m with him 98% of the time when he gets to this state and he tends to go for my face. I have a nice scratch on the side of my nose at the moment. Yeah. It sucks.
The thing is, even when Toby is having a great day with no meltdowns, if startled or excited, he’s likely to just pop you one. We were happily reading Bear Snores On yesterday, and I guess I read a part with too much enthusiasm, startled him, and bam – I took a blow to the nose. You can’t get mad at him for it. It’s almost like an involuntary reflex on his part.
This is an area I hope to see get more attention in the next few months. I’m working on a visual schedule for him that I hope will bring an even greater sense of structure to his daily routine and I hope to be in conversation with his OT soon about a more structured sensory diet throughout his day.
Now that Toby is three he receives services through the St. Lucie County school board. After testing in April he was pretty much on pause until school started up this August. For about three weeks now he has been going to speech twice a week and OT once a week. Speech appointments are 30 min. OT is 45 min. Yup. That’s it. That’s seriously it. His OT told me this week that she wants him reevaluated for PT needs, so this week I got a prescription for that… So maybe we’ll be adding another service. We’ll see.
Our insurance will not pay for any sort of private therapies.
Unless we were to cut out all our other social activities (like big brothers’ sports and other fun things we do) there’s no money to pay out of pocket for private services. I prefer to spend our money by remaining active and subjecting Toby to new experiences that way.
As a stay at home mom, I take seriously my role as his main therapist. (Poor Toby, his main therapist has an English degree.) We swim or go to the beach weekly. We do sensory stimulating activities at home. We had been attending My Gym classes but our local My Gym just closed. In two weeks we are going to start Kindermusik to fill that gap.
Toby is considered delayed but, from what I can gather from other FX parents, Toby is doing very well in this area comparatively. He has an extensive vocabulary. He speaks in sentences sometimes. The thing is that he just loves to talk, but he’s not into talking as a means to communicate so much. Ok sure, he will YELL, “SNACK PLEASE!” “CUP” “JUICE!” but other than that, he doesn’t usually ask for things or express feelings through words. He just likes to chatter, often insensibly. Tonight, for example, after getting out of the shower, he just kept going on and on in a sing-songy voice with “In the…” phrases. “In the shower, in the bathtub, in the potty, in the sink, in the bed, in the...”
He will often answer questions though and that is helpful. Also, he’s remarkably polite. He will apologize to inanimate objects if he bumps into them. When I hand him a cup, he will usually say, “Thank you, Mommy. Thank you!” It’s crazy adorable.
When he was with Early Steps sometimes his speech therapist would test him and in some areas he was only a few months behind “typical” kids. She’d always warn me, “The gap is going to widen,” and I know it is, BUT I also see him progressing. Three and four words phrases were a rarity around his birthday, now they are common. Answering a who or where question was a lofty goal back in April. Now it’s an emerging skill.
He does voices. He has a sense of humor. He is already cracking us up on a regular basis with the things he says. The other day while I was driving he shouted out, “Over there! A chicken!” Um, there was no chicken, but I loved him randomly saying that there was!
Shortly after he turned three we converted his crib to a bed and he usually stays in it!
He doesn’t like to wear shoes. And therefor, usually doesn't.
He can use a fork/spoon when he wants to. Often he doesn’t want to.
He will use a potty for either poop or pee, but he doesn’t yet feel as though this should be the only place he gets to do these things.
He understands a lot. I think he understands much more than the 10% the school board test showed, but there’s a cooperation factor tests can’t account for.
He’s a stubborn little sucker.
He does not limit our life. He makes it more challenging.
Toby-related accommodations sometimes alter the plan. But we are ALWAYS trying
new things. He has ridden on a paddle board with me. He has been kayaking twice
now. He has been on a motorized boat and tolerated the life vest. He loves the
beach. He can swim. (Gee, are we Floridians or what?) He goes to restaurants.
He goes to church. He attended his first VBS a few weeks ago. We’ve attempted
camping. We travel. I've braved taking him to The Magic kingdom in Disney World Orlando.(And it was kind of a disaster, but I learned from it. I'll be more prepared next time.) He likes dogs. He loves the zoo. He will pretend play. So as long as the Children’s Museum
isn’t too crowded, he’s up for it.
One. Day. At a time.
But we would like to do open his special needs trust sooner than later. Right now we just put about $50 aside per month and it’s stupidly sitting in a savings account. We’ll get to that. We will.
It also helps that I'm optimistic and not a worrier by nature.
Before we had kids I knew I was an FX carrier, but I was very undecided about what that meant for our future family. I would think about this from time to time even before I felt ready to have kids. One Sunday the sermon covered the vereses around Luke 11:11 and I have no idea what the topic really was, and I was already familiar with this passage, but on that day, the married but not-yet-ready-to-have-kids, FX carrier me, just heard this: no matter what child we were gifted with, to God, he would be a good and perfect gift for us.
And ever since, those verses have reassured me as we've added to our family, both through adoption and a God-planned pregnancy.
Us. Labor Day 2012