Empty Nest & G Update

All the other birds have flown the coop this morning. It's just back to Mama and Baby Bird up in here. Alex took G's aunt into the airport a little early since we don't trust my car to make the trip which means we lost our helper and game player and Alex won't be home from work until late. What will we do with ourselves??? Of course there's always a certain sense of calm after company...but there's also the "now what?" feeling.

We are homebound more or less because of the car. Although the weather is PHENOMENAL and we'll certainly have to head out on a walk. The high is supposed to be 72 degrees today--how WONDERFUL is that? Nary a fan on in the house, just the cool cool breeze through the windows.

The OT just left and Georgia is making lots of progress. She is beginning to isolate her movements (i.e. putting shapes (well, she's only mastered the circle, but we're on our way) into the shape sorter, the form board and knob puzzles. Getting her to control her movements and her release have not come easily and as I mentioned before, she is prone to slamming and bamming and impatiently throwing shapes TOWARDS the shape sorter rather than placing the shape. But Alex and I have spent some time with her over the last week and she's got it! Next thing you know it will be squares and triangles and stars, oh my. This has been an EXCITING development.

She's been standing alone in the middle of the room for longer and longer periods of time, upwards of almost a minute, and she's pulling up on furniture MUCH more. We are now focusing on getting her to cruise and to "want" to take steps. I think she's on her way. She's not quite there yet, doesn't quite get the whole stepping thing, but I think it's just a matter of time. A far cry from what I was thinking just 4 months ago when we moved here!

Speech.

Oh speech.

This is probably the one thing that has been causing me the most heartache lately. And it's not for any real reason other than I think it finally dawned on me that my daughter will not speak soon or quickly or clearly or much, likely for a long time. I don't mean to doubt her abilities, I fully believe that she WILL speak one day, but I have been thinking so much about it lately and coming to the realization that I have a lot of sadness surrounding this issue. I have been in denial.

Georgia is clearly delayed in speech. That is no secret. But it's becoming more of a concern because she is really not imitating much at all (very limited imitating) and the number of sounds she can make is scarce. "Apraxia of speech" is not a phrase I am unaccustomed to--not that she has been diagnosed with the condition and her therapists have been trying to ward me off from thinking of it as such just yet. I guess a diagnosis of apraxia would come closer to the age of 3.

G is trying and she is inventive (i.e. she will drag her finger across her lips to make a "bu bu" sound when I say "ribbit" because she is not yet able to consistently make the sound any other way). She is definitely a smart girl. Her receptive language skills have been increasing daily. I think this is why I find it so difficult. Partly, anyway.

I want other people to see that she is a smart girl, but I fear that because she cannot speak people will think she is not as intelligent as she is. I think it's a real tendency to think that because someone cannot speak, they cannot hear or understand what is being said. Georgia certainly doesn't understand everything, but she DOES understand. She just can't always relay what she knows, wants, or is thinking, feeling, or needing. Signing, and the importance of signing, is renewed in me time and again.

I haven't totally formulated my feelings on the whole thing, but I find myself thinking about her speaking...or not speaking...a lot. I find it innately sad. Of course there's the typical wanting to hear your child say "Mama" thing, but it's much more than that. Just wanting to know what she desires, what she's thinking, how she perceives the world.

I know it's early and these things will come more and more and more. But I think about my niece who is just 5 and has been talking up a storm for several years. Asking questions and telling stories. Showing us how she perceives the world. And then I read that the average age for a child with DS to speak is 5 years old and I think, "Wow. All that world and time she cannot tell us about."

When I was working in daycares in college, one of my favorite things was to have a child draw a picture then have them explain what was in the picture. It was usually quite abstract--both the drawing and the explanation--and always an interesting look into their minds. We used to write the description in the child's words on the picture. I have always looked forward to doing that with my own kids. I am a natural born story-teller and lover. I want to hear my daughter's stories.

And it's not that she's not telling them. She's just telling them in a different manner.

I guess I am still learning to listen.

Comments

[Michelle]

I completely know what you mean about the drawing picture and telling stories...I long to be able to do that with Kayla. Kayla does have a lot of words, and for the most part is understandable, but we are not having those type of conversations...she doesn't come home and tell me about her day, who she played with, what she did etc. It makes me sad too - especially now that she's in K and I hear all the other kids around her.

[Maggie]

It sounds like G is making great progress!! We struggle with isolating movements too in OT. The circle has been mastered, and we are also moving ahead to the square. But our big worry of late has been speech too. The Boston conference renewed my concerns about achieving intelligible speech. I met so many wonderful adults with DS who clearly were functioning well and had active lives...but their speech was often not great. We lost our ST this summer and after learning more about our state's crappy ST program in general, have decided to do private PROMPT therapy. To be honest, it's kicking my ass and it's a ton of work, but in 2 weeks I've seen a vast improvement in her chewing and oral motor control. Crazy. Emlyn never had any obvious feeding issues, so no one ever really worked on oral motor stuff. She really, really needs it though, and I hate that we didn't recognize it sooner. She can't imitate (same thing - would be dx apraxia, but they don't do that so early) and can't even move her tongue and mouth in many of the ways required for good speech. Her new ST thinks she'll be saying 2 word combos in the next 6 mos. I have no idea if that's possible, but considering how much work this is and how much it costs, I'm hopeful!!

[Lianna]

When you wrote about how other people may perceive Georgia as not understanding because she is not verbally communicative, I sat here nodding my head vigorously in agreement.

I still underestimate Gabe's ability to understand, and lately, he is making a lot of verbal strides.

We live with such pressure to have our kids do all the "normal" things although we accept that it will take longer for them to do them. It's hard, no two ways about it.

The last two years have been really hard for us, Tricia. Terry, my husband, and I work really hard to motivate Gabe to talk. The pressure of upcoming going-to-school is immense and I long for Gabe to be able to go and be understood. To be included...

Anyway, he is doing great, and I know that Georgia will do great too. At her age, Gabe used mostly sign language and it was limited. And it had to be provoked. He didn't just sign spontaneously -- it was all related to us asking and prodding him, as well as part of his book readings.

Your fears and frustrations are understandable. I get it. I think many of us who read your writings and have children can completely relate to how you feel about Georgia's development.

You're definitely not alone.

[Julia]

You just said everything that I feel, exactly. Especially the thinking ahead part, and how Abbie will be perceived if her speech remains unintelligible. I keep telling myself that her personality will show through, just as it does now. But I still freak out, on a daily basis, when I think of speech. I NEVER thought we'd get to 5 1/2 without speaking, NEVER. The good news is-there are so many other ways to get your point across, other than abstract thoughts, we pretty much always know what Abbie's 'saying'. Signing didn't work for us, because her friends can't sign. But AAC so far is helping, I'm hopeful. Oh, and at summer speech camp this summer there were 3 children her age or younger that spoke beautifully, so it CAN happen! Just keep working and know that her friends and family will love her no matter what.

[Kacey Bode]

I know what you mean. I have always worried most about Ella's speech, or lack thereof. People judge ones intelligence on how they speak, and I don't want anyone to doubt Ella's abilities. Ella does do some signing but seriously I want to HEAR words come out of her mouth. It makes me sad, it is my biggest concern.

[Anne]

Just about everyone I know with older kids with DS say that speech is the biggest struggle. And it gets me down from time to time. But, Nick does understand so much and he is getting much better at communicating it. It's a combination of words, signs, gestures and acting things out. He has a lot to say and it's coming out.

I don't get much out of him about what happens in school but I know he's learning things because he'll come out with words and concepts that I haven't taught him. He's so much fun at this age.