To my Facebook friends I've added recently, welcome. You're here because I directed you here to explain a very significant aspect of my life. Many of you know that I have young children, but you may not be aware that my kids aren't typical.
Clearly, the theme of this blog may give you some idea of what's going on, but to summarize, the kids have Fragile X Syndrome, a genetic disorder that manifests in a way similar to autism spectrum disorder. In fact, FXS is leading genetic cause of ASD. But this doesn't necessarily mean that the kids are autistic.
What it really means is that they will have some challenges in life, as will we. We don't know what the extent of their challenges will be. So if you read me talking about accomplishments that they achieve that sound a little "behind," like going nuts over the fact that my nearly-two-year-old son has finally begun speaking, it's not because of "all children develop at their own pace," or some other cliched platitude like that.
It's because for a kid with developmental delays and possible intellectual disabilities, something like that is huge, for both him and us.
The problem is, again, that we don't know what is in store for these kids.
So I invite you all to peruse the pages and links I've put up. This will hopefully give you some background into why I may post a few statuses on FB that may come across like a 21st Century Helicopter Parent of the Year candidate. It is, in fact, the culmination of a long road that we've traveled thus far, and the long road ahead of us.
We don't have typically-developing kids.so it'll be somewhat difficult to relate at times. Just as it's difficult for me to relate to the parents of kids who don't have these developmental issues to contend with. I may occasionally look with envy at parents who are having "normal" problems with their kids, because I know that I may not experience those "normal" problems.
It may seem awful to use the term "normal" in that respect, as if my kids are subhuman somehow. But to be blunt, they don't fit into the "normal" stream of life -- not necessarily "lower" or "inferior" or "unworthy," but just off to the side somewhere. The reality also is that when medical professionals respond to us with "fragile what?" at various appointments, it's hard not to get discouraged. It's hard when medical professionals have to act with confidence and dignity but give us bad advice that we know is bad advice -- advice that's geared toward typically developing kids that doesn't apply to our case.
So on occasion, you may read about our frustrations and our celebrations. Hopefully, you now have a better understanding of why we're making a big deal out of certain things that would otherwise seem like it should be routine.
Thank you for reading, and see you out on the ocean of social media.
Saturday, February 22, 2014
Tuesday, February 18, 2014
Regression Analysis
(yes, another math play on words)
With luck, Henry's regression period is coming to a close. He's starting to stand on his own again instead of just folding up his legs whenever being lowered to the floor. A few days ago, he'd started again to stand on his own power when he was distracted, and only collapse in a pitiful heap when he realized that he was standing and that we were paying attention. Lately, his standing has been less and less surreptitious and more deliberate.
It was heartbreaking, really. In light of the developmental delay, when he had really gotten into the walking-with-assistance/charging headlong into adventure, it was tiring for us, but a good thing because we thought he was physically catching up to kids his age.
Then Evie arrived, I went back to work, we switched bottles on him, and things went to hell. He suddenly reverted back to "helpless little baby."
At first, we thought he was injured somehow, between all the running and the braces we have for his feet. But neither we nor the doctor could detect any physical injury or discomfort. That led to our only remaining option of toddler-based regression.
One step forward, two steps back, as it were.
But if I was to force myself to look at the positive takeaway of this, this means that Henry has enough situational awareness to have regressed at all. If he was completely out of touch with his surroundings, I doubt this would have happened. Small comfort, truly, but comfort nonetheless.
(though admittedly, constantly having to look for the positive in daunting situations just to keep from giving up and crying does get very exhausting after a while)
With luck, Henry's regression period is coming to a close. He's starting to stand on his own again instead of just folding up his legs whenever being lowered to the floor. A few days ago, he'd started again to stand on his own power when he was distracted, and only collapse in a pitiful heap when he realized that he was standing and that we were paying attention. Lately, his standing has been less and less surreptitious and more deliberate.
It was heartbreaking, really. In light of the developmental delay, when he had really gotten into the walking-with-assistance/charging headlong into adventure, it was tiring for us, but a good thing because we thought he was physically catching up to kids his age.
Then Evie arrived, I went back to work, we switched bottles on him, and things went to hell. He suddenly reverted back to "helpless little baby."
At first, we thought he was injured somehow, between all the running and the braces we have for his feet. But neither we nor the doctor could detect any physical injury or discomfort. That led to our only remaining option of toddler-based regression.
One step forward, two steps back, as it were.
But if I was to force myself to look at the positive takeaway of this, this means that Henry has enough situational awareness to have regressed at all. If he was completely out of touch with his surroundings, I doubt this would have happened. Small comfort, truly, but comfort nonetheless.
(though admittedly, constantly having to look for the positive in daunting situations just to keep from giving up and crying does get very exhausting after a while)
Wednesday, February 12, 2014
Paper Cuts and Lemon Juice
An interesting write-up, how The Princess Bride can equate to parenting a child with developmental disorders such as ASD or, in our case, Fragile X.
I especially have to be mindful of #8:
I especially have to be mindful of #8:
Admittedly, it's difficult to rein in the snap reaction when well-meaning parents of typically developing kids offer us advice. They can't possibly have any idea of what this is like, or how much it hurts to hear that our kid is actually that far behind, developmentally, because he hasn't achieved the same milestones as his typical peers.There’s not a lot of money in revenge- Inigo MontoyaDon’t spend your life feeling bitter, blaming yourself, hating autism or resenting parents of typically developing kids. It’s a fruitless and costly waste of energy that can be directed into more productive things.
That's what's going through my head, silently hidden behind the plastic smile with gritted teeth, deliberate eye contact, and strenuously controlled rhythmic breathing.
"Yes, I'm sure he will start talking incessantly soon," I say.
"HOW THE HELL WOULD YOU KNOW THAT HE'S JUST ON THE VERGE OF TALKING WHEN HIS SPEECH PATTERNS ARE THAT OF AN 8-MONTH OLD??!!?" screams my brain.
"He's 20 months? Oh, it's gotta be tiring trying to chase after him, huh?" says the grocery clerk, sweetly. "He's a handful!" I say cheerfully but vaguely.
"NO IT REALLY ISN'T THAT TIRING BECAUSE HIS BODY IS BETRAYING HIM BY NOT DEVELOPING THE MUSCULATURE HE NEEDS TO BE ABLE TO SURVIVE ON HIS OWN," my spirit cries.
"Oh, he'll be okay soon! Hahaha," say my conversation partners who are growing uncomfortable because I'm starting to scratch beneath the superficial and meaningless, and want to change the subject quickly.
"WHAT THE HELL IS 'SOON?' WE CAN'T EVEN BEGIN TOILET TRAINING BECAUSE HE'S NEITHER WALKING NOR COMMUNICATING COHERENTLY. DON'T TELL ME HE'LL BE 'OKAY.' YOU. DON'T. KNOW," my desperation scolds.
But again, these are the hair-trigger knee-jerk reactions. Nobody deserves that. Not the people with whom I'm speaking, not myself, and definitely not the kids. The kids don't deserve me giving up like this or giving in to the Dark Side of the Force.
Yes, I'll be frustrated a lot, and I may get frustrated because I'm feeling like I'm being shown my own inadequacies by the parents of typically developing kids who proudly and smugly seem to proclaim that they're all Normal. Or that it does get exhausting trying to read the tone of the conversation and determine that those who are listening are not prepared enough to deal with everything I want to say, but have to keep bottled up.
But unless someone comes as straight-forward as to call my boy a "retard" directly, then they don't deserve my fury. They're not doing this out of malice or superiority -- that's my own head filling in these gaps and attempting to rationalize a question that I can't answer.
It's unfair. It's unproductive. And ultimately, it's a waste of time. This is not Ultimate Suffering. This is not the Fire Swamp. I can't be in the revenge business for so long that I no longer know what to do with my life.
My kids need a father, my wife needs a husband. Not Batman (well....maybe that's not entirely a bad thing...).
Post-script: Then I look at these faces and all becomes right with the world:
Post-script: Then I look at these faces and all becomes right with the world:
Sunday, February 9, 2014
Regression? Or Normal?
Sometime last week, Henry must have had something occur that made him scared. For the last week, he has not only refused to walk anymore, but also resisted standing. If we put him in position to stand, he would be revving up and ready to take off before.
Now, he draws his legs up like he's afraid to stand.
Lori took him to the doctor, who didn't notice any obvious injuries. I've surreptitiously checked out all of his muscles and joints, and he doesn't react to any touch as if it hurt. So, like any 21st Century parent, what do I do?
To the Internet! Which is, of course, a huge mistake all on its own.
I've gotten everything from toxic synovitis to the "onset" of autism (which, in and of itself, is suspect phrasing). He is physically able to stand and jump -- that much is obvious whenever we put him in his too-small-for-him exercise saucers. He just refuses to anymore, and seems completely gun-shy. Other Internetters have said that they've experienced this with their typically-developing children and that they got over it in a few weeks (!!!), with no known cause.
Another symptom that indicates a fear-based reason is that he seems very reluctant now to swan dive backwards out of my arms when I'm holding him. Before, it was his rush, his adrenaline-junkie way. Instead, when I leaned him back to begin that motion, he started clinging desperately to my arms to avoid falling backwards.
All I can think of is that he must have fallen or stumbled to where it may not have physically hurt him but mentally hurt him somehow.
So that puts us in a tough position. Do we coddle him in the hopes that it goes away naturally and he regains his confidence on his own terms (with the risk that he won't and his physical development regresses), or do we act like Viper and Jester in "Top Gun" and keep sending Maverick up in the hopes that he'll get over Goose's death and engage?
UPDATE: Henry's OT and PT aren't worried about this. They suggested that a huge series of rapid fire changes probably just overwhelmed the poor kid. From me going back to work (when previously, I'd spent most every day at home with him), to switching bottles (he got the smaller 5 oz. bottles while we gave Evie his larger 8 oz. bottles so that we can increase her feeding), to potentially figuring out how to speak, to just the presence and increased awareness of a little baby in the house who's getting more of the attention that he used to get exclusively, and that he's approaching 2 years old probably all did it and something had to give. They're fairly comfortable that he'll remember again when he's ready.
Now, he draws his legs up like he's afraid to stand.
Lori took him to the doctor, who didn't notice any obvious injuries. I've surreptitiously checked out all of his muscles and joints, and he doesn't react to any touch as if it hurt. So, like any 21st Century parent, what do I do?
To the Internet! Which is, of course, a huge mistake all on its own.
I've gotten everything from toxic synovitis to the "onset" of autism (which, in and of itself, is suspect phrasing). He is physically able to stand and jump -- that much is obvious whenever we put him in his too-small-for-him exercise saucers. He just refuses to anymore, and seems completely gun-shy. Other Internetters have said that they've experienced this with their typically-developing children and that they got over it in a few weeks (!!!), with no known cause.
Another symptom that indicates a fear-based reason is that he seems very reluctant now to swan dive backwards out of my arms when I'm holding him. Before, it was his rush, his adrenaline-junkie way. Instead, when I leaned him back to begin that motion, he started clinging desperately to my arms to avoid falling backwards.
All I can think of is that he must have fallen or stumbled to where it may not have physically hurt him but mentally hurt him somehow.
So that puts us in a tough position. Do we coddle him in the hopes that it goes away naturally and he regains his confidence on his own terms (with the risk that he won't and his physical development regresses), or do we act like Viper and Jester in "Top Gun" and keep sending Maverick up in the hopes that he'll get over Goose's death and engage?
UPDATE: Henry's OT and PT aren't worried about this. They suggested that a huge series of rapid fire changes probably just overwhelmed the poor kid. From me going back to work (when previously, I'd spent most every day at home with him), to switching bottles (he got the smaller 5 oz. bottles while we gave Evie his larger 8 oz. bottles so that we can increase her feeding), to potentially figuring out how to speak, to just the presence and increased awareness of a little baby in the house who's getting more of the attention that he used to get exclusively, and that he's approaching 2 years old probably all did it and something had to give. They're fairly comfortable that he'll remember again when he's ready.
Consolidation
Just a blog update on this one, rather than any deep thoughts. I decided to consolidate the kids' picture sites into this one so that there's just a single location for the blog and their month-by-month photo diary. Maintaining some separate Tumblrs as well as this blog got to be a little too much of a hassle.
So both the Henry by the Month and Evie by the Month (had to change it from "Evelyn," since I'm no longer used to calling her by her full name) are now housed here on Blogger.
So both the Henry by the Month and Evie by the Month (had to change it from "Evelyn," since I'm no longer used to calling her by her full name) are now housed here on Blogger.
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