Wednesday, October 12, 2011

Hot Potato

My son Elijah has an issue called "Tactile Defensiveness". It's a sensory "sensitivity", which  is I guess, one way to explain it.  Basically, he doesn't like the feel of certain things in or on his hands.  It's partly why he scoots around on his belly using his forearms and toes, instead of pushing up to a crawl position on all fours.  He doesn't seem to love the feel of all of the weight in his palms.  He does push up to all fours now (newish milestone), but he doesn't use it as a mode of transportation yet.  He eats baby puffs like a pro now, but if you drop a little food on his high chair tray, he immediately swipes at it and throws it off as if to say, "Ew! Yucky! Get that off of here."  It's frankly a little reminiscent of that old game, "Hot Potato", where you have to try to get rid of the potato as fast as possible.  The self feeding is slow going. The day we'll be able to go to a restaurant and plop down a few pieces of fruit, some beans and a couple of crackers and just let Elijah eat on his own will truly be a day for glorious celebration- because it feels like that day will never arrive.  In fact, I looked at our Occupational Therapist this week and said, We have to get him to be able to eat some cake by his second birthday. He will be able to eat cake by his second birthday, won't he? She can't promise me that he will, but she did promise that he'll get there eventually.   That eventually he'll do it all. For now, he's making progress and the progress is huge. (Don't forget to pause the music player at the bottom of the blog before watching the video...)

I don't get a chance to talk about my feelings a whole lot.  I'm too busy. I'm raising boys, running a business, working a job and trying to make enough time for my husband, myself, and my friends so I don't lose my mind by going without free time.  In those times of getting together with my friends and family, I don't try to avoid my feelings or avoid talking about Elijah and how I might be feeling about his progress.  It's just simply that I run out of time.  What's first and foremost in importance to me is the catch up- the fun, reportable news about a new craft project or how hard yoga was last week or the thing that my hubby said that pissed me off (Okay...not MY hubby.  But A Hubby. Anyone's Hubby. The generic idea of a hubby who might possibly piss someone off. Not me, though. ...Not you either. Just need to cover my bases and make sure I point out that these are hypothetical things I might catch up on. You get it.) Since time usually runs out before I can even get to talking about  how I might be feeling about Elijah's progress, I end up saving it for my blog.  It's semi-cathartic to write it all down, and even though I usually don't hear back from 99% of the people reading this, I have some hope that by putting it all out there that maybe I'll give some perspective that wasn't there before, or possibly reach someone who is feeling exactly like I am- because there is comfort in that.  As much help as it is to write it all down though, it's really not enough all of the time.  I need feedback. I need someone to remind me when I'm having a down moment that Elijah is perfect, but that everything is going to take longer.  And that just because it takes longer doesn't mean he won't do it all.  That one day I will look back and think, I should have cherished it even more than I did. But, I just don't seem to have time for these conversations. So, I stay up late with a glass of wine water (...okay, wine), sit down in front of my computer, and then just write.  Usually I'm a little surprised at what comes out.

I made a commitment to myself to be honest and upfront about my feelings on this blog. There is a lot that I censor myself about.  I censor myself because I don't want to hurt people's feelings.  Sometimes, however, I will hurt someone's feelings by talking about my own.  I am not always going to say the perfect thing- in life or on this blog. You are not always going to say the perfect thing either. (Again, a hypothetical "you") We will not always say the right, or the perfect thing.  That is because I am human and flawed.  In the past when I've talked about real-life scenarios for the sake of processing them or sharing them for others to process, I have inadvertently hurt a few people's feelings. I know this because they told me. One person even told me she can't read my blog anymore. This is tough for me. I have a lot of feelings about that, but I'll censor saying why. 

Real life scenario: I hold my breath everytime I go out in public with Elijah, dreading when the question is going to come..."Oh how cute! How old is he?" When I say 17 months, I watch the wheels spinning in that person's brain- adding up why he isn't walking or talking yet. Sometimes people will go so far as to ask if he's walking or running or talking yet.  Usually I just say, "No. Elijah has developmental delays, so it'll take him longer to do all of those things."  I find that strangers handle this more gracefully than the words, "He has Down syndrome so it'll take him a little longer to do all of those things."  I was at my mechanic last week and I had both of the boys with me.  The guys were joking with Christian and admiring Elijah when the dreaded, "How old is he now?" question came up.  Since I actually know these guys a little bit, and Christian even goes to school with one of the mechanics' sons, I gave the whole answer and told them that Elijah has Down syndrome.  They, like most people, didn't know anything about Down syndrome and had a lot of questions/comments.  There was the question of severity. He doesn't seem to have a very severe case of it. I always have to take a little breath before commenting on this one, because I really don't want to come off sounding like I'm trying to school someone or embarrass them or sound condescending. I shared that a person either has Down syndrome or they don't.  There is no level of severity to it. Down syndrome is simply the existence of an extra chromosome in a person's cells. There are varying levels of cognitive ability and some people with Down syndrome can do a great deal with their lives: graduate from college, have a job, get married, while others are more dependent on a caretaker.  The reality is that we just don't know what Elijah's cognitive ability is yet because he's too young.  What I do know is that he seems pretty darn smart to me.  He "gets" a lot of things.  He is interested in and motivated by people, and quickly and easily reacts to them.  I feel that he will have a great deal of cognitive ability, and so I say that (in this case, to the mechanics.) Immediately they seemed to relax. The idea of someone "suffering" or being "disadvantaged"  (which Elijah is neither, in my opinion) is like the game of Hot Potato. People want it off their plate.

Trips out in public are sometimes a little more awkward, and I don't always want to answer the questions, but I get a sense that it's great for people to be seeing Elijah- that he is changing minds about how much of a "sob story" it is to have Down syndrome.  I keep off of the heavier issues and save my feelings about it all for those cherished few conversations and this blog.  And although the following pictures have absolutely nothing to do with this post, I just have to share a few cute ones we took with the boys last weekend.... :)






And my favorite one...


Oh yeah....and when I went to go pick up my car, the mechanic gave me 50% off.

Hot Potato?


Jennie said...

Thanks for sharing, Jen.
(I blogged something similar on Tuesday)

Jenny said...

Your honesty is what draws me to your blog...I keep reading it because I can relate to it.

thea said...

Well said. I prefer unfiltered emotion. As someone who has spent her year trying to live out loud, I say emotional censorship is overrated and generally detrimental to your emotional well being. Maybe this isn't the forum to address the friend who can't read your blog. But if you are truly bothered, then you owe it to both of you to chat it out.

As for Elijah....I couldn't help but think of my race when reading your words. In the end we all run our own race the only way we know how. Sometimes it's pretty, sometimes it's a hot mess, but whatever happens along the way, it won't take away from the overwhelming feeling of triumph when we finally reach the end. The half marathoner I passed on my final stretch will feel no less joy.

He'll eat cake. I bet it will taste AMAZING for everyone who witnesses it. xoxoxo.

Becca said...

I love your honesty. I feel the same way about some of those things. And you really hit the nail on the head about being in public and showing to everyone that Down syndrome is not a bad thing, not a death sentence to either parent or child. I always found that *my* attitude in public with Samantha is what colored all of our interactions - all completely positive. I think we've changed a lot of minds with that alone.

Btw, about self-feeding...ugh, we had a tough time with Samantha as well. Not that she wouldn't self-feed, but that she a) wouldn't chew until she was 2 (we had to cut things into teeny tiny non-chokable bits and are *still* nervous about it, even though she's proven over the last 3 years that she chews all the time now), and b) wouldn't try anything new. She still won't. Totally limited palate, which can be a real nuisance. *sigh* Hang in there!

P said...

Couldn't the shoving the food away be behavioral? If it was sensitivity I think he'd avoid touching it! It must be part of the defensiveness but less extreme than complete avoidance maybe. All kids toss the food some--it's FUN! I think grasping that if you toss it you don't get to eat it might take more time to process for our kiddies and besides, mommy gives me it anyway.

I think the arm crawling is also a huge part just muscle weakness too-how can they separately identify weakness verse aversion? He loved the beach and grass too right? I'm sure it's not wrong completely but our upper bodies are heavy compared to tiny arm muscles!

Benji did bear crawl only eventually and certainly LOCKED his legs for artificial strength and I bet his arms too. His core and upper body strength are poor and he's far from running I think despite walking for almost a year.

The speech therapist today at DSALA had us lift our legs, shift our hips forward/lean forward with rounded shoulders and try to pretend to eat. It's HARD to both swallow and raise your arms. Be sure his feet are supported and flat on something - use a stack of books or something she suggested!

P said...

Be sure to run those comments by Joe the PT from club 21! He's at home with his baby now so might not mind you bugging him before his next scheduled time there and who says your schedule will get you there!

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