Tuesday, May 22, 2012


As a special needs parent, there are good days and bad days. (Well, I suppose that's true of any parent--but I've only ever been a SN parent, so I have no basis for comparison). Everyone knows this. There are days you want to shout from the rooftops about the progress your child is making. And there are days when it takes every fiber of your being to just get through the day because you feel scared, overwhelmed, guilty. Today was the latter.

Prior to Gabriel getting a diagnosis of FXS, occasionally someone would mention autism because of his speech delay. This was always immediately shot down by me. I would hear none of it--I know my child better than anyone else in this world (except maybe Jake) and I knew Gabriel did not have autism. Even when he wasn't speaking at all, he was very social--had no stranger anxiety, would laugh and smile at anyone, made eye contact, etc. Not only did I truly believe Gabe did not fit the clinical criteria for autism, I also refused to label my child with what I believed to be an incredibly overused, cop-out diagnosis. I thought (and still kind of think...I'm on the fence at the moment) that the autism diagnosis is today, what the ADHD diagnosis was in the '90s. (Begin sarcasm) Your child doesn't fit the definition of perfect? Ok, here's a label! Instead of having your little boy go run around the backyard for an hour to burn energy, pop a Ritalin! (End sarcasm) I know that isn't a popular opinion in the SN community, but it is what it is. (And for the record, I do understand that some children truly have ADHD, just as some children truly have autism. I just think both are over diagnosed).

Anyway, I had to give some background on my feelings about autism in general, because even I can't believe what I'm thinking...I think Gabe could be autistic. About a third of children with FX meet the clinical criteria for autism. That means two thirds don't. Those are decent odds. I wouldn't play a $100,000 minimum bet blackjack table in Vegas with those odds, but I'd play a $5 table.

Here's why I'm thinking what I'm thinking:
  1. Over the last several months, Gabe is becoming more and more socially withdrawn. He used to love to go to the grocery store, sit in the cart, and smile and say hi to everyone voluntarily as we walked down the aisles. Jake and I carry him 90% of the time now, because not only will he not even respond when someone says hello, he seems to be incredibly overwhelmed at being around all those people. He wants to be held so he has our arms around him for safety, and he can bury his head in our neck and block out all the people. We oblige more often than not. I have no idea if that's right or wrong, but it's what works for us. (This is where him being the weight of the average 12 month old comes in handy. See, there's a plus to everything). God forbid a clerk tries to engage him in conversation. At best, he will just ignore them. At worst, he will shriek and try to bury his head further into my neck.
  2. Though Gabe got off to a very slow start with his language skills and began speech therapy at 15 months, he began closing the gap. A month ago, I would guess he was at age level for speech, or close to it. Speech went from being my biggest concern to my least concern, with Gabriel's overall development. He may have been a little behind still, but he was making progress. Here's what gets me worried now: I think he's regressing. I've been noticing some regression over the last week or two, but didn't say anything to Jake because I thought it might be in my head and didn't want to plant the seed in his head. Well, today Jake said something to me about it. That he had noticed it too. Gabe still has a decent sized vocabulary, and will put together some short sentences (typical 2 year old development), but it's becoming muddier. Where a week ago, Jake and I could understand 95% of what Gabe was trying to say, today we could only understand about 50%. The other half was so poorly enunciated that even us, Gabe's parents, couldn't make it out. Sometimes, if we asked him to repeat himself 2 or 10 times, we figured it out. Sometimes we didn't ever figure it out. He's also not using his words in situations where he used to use them. Example conversation from two weeks ago--Us: Gabe are you hungry for dinner? Gabe: Gabe hungry! Us: Do you want a grilled cheese, or chicken nuggets? Gabe: Nuggets and ranch! Example conversation from today: Us: Gabe are you hungry for dinner? Gabe: AH! Us: Are you hungry? Yes or no. Use your words, please. Gabe: yeah Us: Do you want a grilled cheese or chicken nuggets? Gabe: AAAHHHH!!!!
  3. Gabe likes to ignore us now. We can try to get his attention over and over again, and it's like talking to a brick wall. I know his hearing is fine. He just doesn't feel like responding. Again, not always. But it's happening more frequently than it used to. 
  4. Gabe has some sensory issues. These are no better or worse than they've ever been. He's sensitive to food textures and loud noises mainly.
Now, I can tell myself that the first point is Gabe just being a typical 2 year old. Some have stranger anxiety or are shy. Certainly not unheard of, in toddler land. I can even tell myself that the second point is just Gabe being a typical toddler--maybe he's trying to talk too fast to enunciate clearly and trying to see what he can get away with, if he doesn't talk to us. The third point could also be easily explained, I'm sure. The fourth point is typical of FXS kids. But when you combine all 4 together--my mind does wander down the autism road.

It's hard for Jake and I to figure out what's going on sometimes. What is typical 2 year old behavior? What is typical for FX? And what is abnormal for NT kids and FX kids? I suppose at some point in the near future, I'll mention my concerns to one of his doctors. Probably neuro. And I also suppose someday soon, I'll ask his therapists what they think.

I haven't done it yet. I'm scared to hear the answer.

Thursday, May 10, 2012

And another one bites the dust...

I'm fed up, grouchy and frustrated right now. As a Mother of a child with multiple "concerns" I have yet to find something more frustrating than the food battles. I understand a lot of toddlers are picky eaters and it comes with the territory. However, Gabe just doesn't eat. Period. And tonight's dinner just made everything worse: not only did a staple of Gabe's diet bite the dust (rice with butter, olive oil and cheese for calories), but Gabe had one of the worst meltdowns he's had in a LONG time.

Here's how our evening went:
Gabe: I HUNGRY! Mama cook rice?
Me: I can definitely cook rice. Let me start it for you.
*waits 40 minutes for rice to cook.*
*spends 3 minutes topping the rice with calories*
Me: Here you go, Gabriel!
*Gabriel takes one bite*
Gabe: All done rice!
Me: I don't think so, you can sit in your chair until I'm done eating then.
Gabe: All done rice! I go play!
Me: Nope--we're eating dinner. You need to sit until I'm done even if you don't want to eat.
*Gabe (very MAD) shoves a huge handful (yeah, he eats with his hands more often than not) of rice into his mouth. All is well for approximately 4 seconds. Then he starts choking. Not choking choking, like I need to do the Heimlich or anything. Just coughing and gagging. He breaks down into giant alligator tears, which only makes the coughing worse.
Gabe: (Still crying, screaming and coughing at the same time) All done RICE!!!!
*Gabe is bright red, obviously very scared, and screaming his head off about no more rice. I hug him to try to calm him down (and get the rice/butter/olive oil/cheese mixture all over my shirt in the process)*
Me: Ok, you can get down (yeah, I gave in. Well kind of--I mean the kid did just nearly choke!)
*Gabe gets down and continues his meltdown--screaming, shrieking, tears, the whole nine yards*
*I eat my dinner and ignore him*
Gabe: (a little calmer) I HUNGRY!
Me: Ok, let's get back in your chair and finish eating
*Gabe freaks out again--I turn away from him and keep eating*
*Gabe calms down*
Me: Do you want a cookie? (And yes, I KNOW what you're thinking...What kind of good parent offers a child a cookie after a tantrum when they didn't eat any dinner? A parent who will do literally anything in the world to get their child to eat a few calories throughout the day. A parent who dreads meal time like it's the freaking plague, because she's SO tired of this battle).
Gabe: Cookie!
Me: Ok, well then get in your chair
*Gabe melts down again*
Gabe: No chair! Bad chair!
*Thinking to myself, "Great--now he's scared of his high chair because of the "choking" incident, and mealtimes are going to be that much worse."*
Me: If you want a cookie, you need to sit in your chair
Gabe: No cookie!
*Gabe screams some more*

After 30 minutes of on again/off again (but mostly on again--aside from a break to take a breath) screaming, shrieking, and flailing about, Gabe drinks a sippy of Pediasure and goes to bed. He never did eat the cookie. And honestly, I knew he wouldn't--another reason I wasn't so concerned about offering it to him in the first place.

And yes, I know Pediasure supplies him with calories (240 per bottle, to be exact) and I should be grateful for that. But when it's 85% of his caloric intake for the day (as of his nutritionist/feeding therapist's last estimate) it makes me hate it for 3 reasons:
1. It smells awful
2. It's expensive: $2 a bottle, times 3-4 bottles a day= $56 a week on a "supplement" that our health insurance won't cover, despite a doctor's prescription for it. But that's another rant.

And 3rd, and most important: It makes me feel like a failure as a Mother. I think a Mother's job is to provide 4 things: Food, Shelter, Clothes, and Love. (Of course as all parents know, there is way more to it than that, but when you break it down--A child can survive with those 4 things). I can't feed my child. And it kills me. It absolutely breaks my heart. You better believe that after Gabe's major dinner meltdown, I had a little mini-meltdown too. What kind of mother can't get their child to eat? And I'm not making him eat vegetables. I'm talking grilled cheese, chicken nuggets, mac and cheese. You know, kid food. Well kid food drowning in cholesterol and fat--we're supposed to load up all of Gabe's meals with condiments (I use that word loosely). You want to dip your mac and cheese that was already made with extra butter, in ranch dressing? Go ahead! It's good for you! I gave up on veggies a long time ago. Hell, Jake and I actually fed him a candy bar for lunch one day. He took one bite, spit it out and was done.

Now, I'm not nearly self-centered enough to think that Gabriel's feeding issues revolve completely around me. I understand the medical complexities behind it: hyper-sensitivity to textures coupled with weak muscles (including mouth and throat muscles), a.k.a hypotonia. Possible reflux--we're still working on diagnosing that one. But all the medical explanations in the world, doesn't really make the fact that I can't feed my child easier. Especially when he's so underweight to begin with (I believe a doctor at some point actually called him "malnourished."--talk about a kick to the gut). Pediasure is barely keeping him afloat.

Gabriel's nutritionist/feeding therapist told me that I need to separate myself from the food battle. That it is my job as a parent to provide a meal for Gabriel to partake in. After that, I'm done. If he doesn't eat it, don't worry about it. Yeah, obviously I'm still working on that one.

Wednesday, May 9, 2012


As part of our "get in shape and do a 5k" plan, Jake and I have been taking Gabe on 3 mile walks every day for the last few weeks. We always start out with him walking, and then put him in his stroller when he gets tired. Normally, this is after a block. Two, tops.

Yesterday, he walked .91 miles on his own! I couldn't believe it! (And I know the exact mileage because I track our walks on my phone). That would have been exciting enough for me, but there's more! Several different times (maybe 4 or 5) he actually tried to run! He could only go for about 5 seconds before he lost his balance, and it was very awkward looking, but it's a start! Go, Gabriel! You rock!

I admire my son tremendously--he works way harder than most toddlers to accomplish the same tasks (and often times needs therapy to learn), but he accomplishes them. I read an article from an FX parent on Facebook the other day about a child with FXS going to college. That could be Gabriel. That inspires me so much to continue working with him--I truly believe he can do so much. Will he require assistance to get there? Probably. Will he have to work harder than his peers to accomplish the same thing? Yes. But he's determined; and we are determined to help him achieve. Whatever those achievements may be. I know the bumps in the road aren't over, but today I'm excited for him--to see what his future holds.

Tuesday, May 1, 2012

To Social orNot to Social

I've been staring at the Social Security/Disability web page for an hour now...

Could we use the extra help that Disability Medicaid would provide us? Of course. Though we hold private health insurance, the co pays on Gabe's testing and services add up. $25 a time, times 20 times a month. Yes, we CAN pay out of pocket, but will we be ultimately be denying our son services? When his OT or PT or ST suggests a service, will we have to say no, because of monetary constraints? I hope not.

It's hard for me to answer the form: First and last name: done. No problem. Child's disability? HUGE problem!!! MY child is NOT disabled!!!! He is exceptional, in everything he does! He talks better than some NT 2 year olds, and he is so funny and smart.You are NOT suggesting I label my child as disabled just so they can receive government services??? I think I will hold off on filling out the SSI/Disability form for one more day.