Monday, March 22, 2010

Steps

Shortly after I published that post about "Turning a Corner", we began, little by little, backtracking. And before I knew it, we were exactly where we were before - that old street - the one we were on before we had supposedly turned that corner.

Dylan is back to dropping food. He doesn't eat it anymore or seem remotely interested in anything that we offer him. He won't even allow me to place the food into his mouth. He makes a bad face, tunrs away, swats...

And as I was thinking of this last night, one word popped into my head:

Steps.

With Dylan, we are always taking steps. Every now and then, we will take a huge one, but mostly we take small ones. Each day, small steps of progression. But, as is the case now, there is the occasional backward step. Just when I think he's got it, back, back we go.

It's confusing and it's frustrating.

But, that's how it is going to be with feeding, I think. That's how it's always been with feeding and it's important that I begin to accept that. And I think I am getting there, I really do. I do not get nearly as frustrated as I used to. Because I know that he will get it, regardless of the types of steps it takes to get there. I mean, he has gotten it...now we just need to learn how to keep it.


I remember a couple of months ago, I had randomly mentioned to Dylan's OT that he used to say "mama" all of the time, and then suddenly stopped. He preferred to say "dada" instead. It then occured to me then that he also used to sign 'milk', but had stopped that as well. After I told her this, she looked at me with a very serious expression - one that I had recognized all too well, one that we'd experienced many times throughout Dylan's first year. My stomach dropped to the floor. She said, "We take that kind of thing very seriously. Regression. It's not good, Laurie.". My faced burned with...fear? Anger?

So wouldn't you know that right after she left, I popped open my laptop and googled "regression" and "Down syndrome"... And, well, you know that's never a good thing...

Oh, I don't know. Maybe it's more, maybe it's not - this "regression". I prefer to think that it's all just about steps, though. Small, medium, big, tiny and backwards.

Come to think of it, maybe these so called backwards steps are more like practice steps. Maybe they don't have to come in sizes or go in particular directions. Maybe it's just that this particular skill, feeding, isn't fully mastered and thus appears to come and go...and with these practice steps will eventually come true success...

For right now, though, it's jarred turkey and rice. Oh, lordy...

13 comments:

Anonymous said...

Laurie
I don't know what to say but you are doing all that can be done.Even adults have our slide back times.I guess being a parent makes us want our kids to do more than they can do.You will look back some day and understand it all.He is a great guy and all is going to be ok.God Blesses All His Children. Art Betty

Kelli said...

Hi Laurie...just wanted you to know that I completely understand...the feeding issue has been a very difficult one for us as well...and very frustrating. I loved the way you looked at it...with practice steps...Dylan is such a cutie!

DownTownDan said...

Laurie, you seem to have your mind wrapped around this quite well. I hope you do, because you could worry yourself sick about this stuff. And I just don't see how worrying yourself sick is healthy, especially since everyone repeatedly stresses that our children are individuals and don't follow a set rule book of development. I am sorry that it is a bit of a yo-yo experience for you, though.

The Sanchez Family said...

You just hang on my dear! He will progress and there will be backward and forward steps. We are in the same boat. Joaquin will eat bites of pizza and popcorn but won't eat a banana unless it's mashed or any other fruit unless it's pureed. It's frustrating. Big hug!
xo
Jen

Katie said...

At six months old Jack babbled a lot. He stopped babbling when he was progressing towards sitting and then crawling. Then started babbling again. Now he is trying to walk against the furniture and hardly makes any word sounds. I think that's just how it goes. Dylan is not regressing, he is just working on different things at different times. =)

Angela said...

(((hugs)))

Being a mom is hard enough. But when you throw in the DS, it's so much harder! B has regressed at things, too (mainly signing), and it worries me. I have to keep telling myself that it's just not all that important to him right now. Communication isn't his focus--moving is. So his brain isn't centered on that currently.
You're doing a FANTASTIC job with Dylan. It's apparent that you love him so much and want what's best for him.

Cathy said...

((((((HUGS))))))

Tausha said...

Laurie, You and I should talk sometime. Reading your post seemed so familiar to me. Sam always said Mamma and now it's only Dadda. He is so funny because one day he will eat everything and do well for a week or so and then stop and not want anything. He wants whole wheat bread and then he doesn't want anything to do with it. He eats bananas and then he won't touch them. I think we are doing so good in the eating category and then it all backfires. I think it's just normal or I hope so. Let me know if you find out anything different but know that I am dealing with about the same thing with Sam.

Lisa said...

What a timely post, Laurie. Finn seems to have taken some backward steps of late too, and I'm trying very hard not to worry myself sick over it :(

Jen said...

Down syndrome or not kids have their own time table. Love him, encourage him, pray for him, pray for you. Whenever I feel like we're not making progress I just look back 3, 4, 5 months on my blog and read about Little J and then I can see we are making progress. Also I look back on the past reports from therapy sessions and can see all the progress being made. Hang in there! We're all in this together.

Ann said...

Caleb was definitely not as verbal when he was working on the gross motor stuff. Now that he's walking, we've seen a major increase in his interest in talking and/or signing. What can I say about food issues....ALL of my kids drive me nuts with the food issues. How can someone as obsessed with food as I am have 3 children that could take it or leave it. It's punishment I tell you and I'm so over it! Hang in there and try not to stress. There will be magical moments again.

Tim and Kelli said...

Jarred chicken and veggies tonight. Why anyone would pick this jarred stuff I will never know but I feel your pain.

Cheri T. said...

Laurie, I just read this post(been offline for a few weeks),you are not alone! My little guy is just about the same age as Dylan,and going through the same things. I have been stressing because he, too, said Mama for months, and now won't say it AT ALL. He says Dada now. I was advised to try delaying response to him, to see if maybe I was just meeting his needs before he has a chance to ask. Didn't make a difference, he just gets mad, or calls for DAAAA!He has other words too,that he has said once or twice, but not again. I think you are right about practicing; I forgot that sometimes kids do that,even kids without down syndrome,or autism, or any thing else!I hope I'm right, I miss hearing him say MAMA(though he does say "na" when he wants to nurse,which of course means he wants me since no one else can do that ;)