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Wednesday, April 9, 2008

Speech Therapy

Hallie began private speech therapy on Sunday. We consider ourselves very fortunate that our therapist was able to get approval to see her twice weekly for 12 weeks. Hopefully, she'll be able to extend this because it's really clear to us that this is not a problem that is going to go away in 12 weeks. Indeed, I suspect this will stretch on for years and, unfortunately, at this juncture point, it's unclear where or how this story is going to turn out.

In other words, the shoe that we always expected, appears to have dropped. Very quietly.

So, this is not a fun post to write. Normally I'm either an optimist or I am indignant and a fighter where Hallie is concerned. I'll do anything to get to the bottom of what's going on (figuring out the reflux puzzle, figuring out the allergy puzzle, not taking no for an answer or accepting easy fixes that specialists throw at you when I know my kid better than they do, etc etc). This talking puzzle, and to some extent, its corollary, the eating puzzle, have me stymied and dejected. I don't even know what to say anymore. How appropriate.

So therapy is very hard for Hallie. Talking is very hard for Hallie. That's what it boils down to. She is so clearly unable to make her mouth and lips work to make sounds, even when she knows those sounds and makes them in other contexts. For example, Hallie has begun to imitate the word "good" (sounds like "guh" or even just a glottal "g" stop sound) at home. If we say "good" (as in "good girl"), Hallie says "guh" almost every time. But when the therapist put her on a swing at the office and tried to get her to imitate "go" ('guh' would have been perfectly acceptable), Hallie simply and clearly could not do it. Over and over again. The second we said "good" she'd go "guh" and if we said "go" she'd look at us, and try to move her mouth, and nothing would come out. The good news about "go" is that we eventually managed to get "go" (guh again) out of her on the park swing last night after we both got home from work. And now we can probably go with it, so to speak, but this is so, so hard for Hal.

The word that had her so frustrated and broke our hearts was "ball." Balls are one of Hallie's favorite things but for some reason she cannot sign them and she cannot say "ball." She says "buh" for Big Bird, Bert, and Bubbles---they all sound the same and are just consonants, really, but we'll take that. But not for "ball." And the therapist would not give her a ball until she said and signed something and so over, and over again our little girl was upset, and frustrated, and at the end literally threw up her hands in the air and did not know what to do. We'll work on ball at home, too, and eventually she will get it. But this is so hard and our hearts are breaking.

I think it'll go like this for every word at this point, and they are not really words but mere approximations. And then we will need to fight to turn them from mere statements into modes of communication (nothing except Sesame Street functions that way yet). And then we will need to add vowels, and syllables and build language.

It's like teaching someone who had a massive stroke how to speak, I imagine. And not knowing if they ever will.

So we are just sad. We'll fight this, of course, no matter what it takes and we will get her to speak however best she can and communicate with us in whatever mode works, and love her, love her, love her throughout this process, but this morning, and last night, and the day before have been very hard.

On a positive note: we did have a four day vomit free streak (March 31-April 3) and yesterday was sans spew, too. So we are up to 30 days of no vomit this year, four of them being in April. May the streak go on!


Jennifer said...

I'm so sorry you're frustrated. At my retreat this weekend I met a mom of a micro-preemie with a severe language 'problem' - she's only 4 but doesn't speak, only grunts really. They have no official diagnosis for the problem. Mom was doing lots of scrapbooking pages on her daughter and was very honest about how hard it has been working on communication with her. They didn't start speech therapy with her until she was over 2 and she is starting a special school in a few months but they have seen a difference in the therapy she's had. She will communicate in her own way now and that was the biggest hurdle to overcome for them.

It will get better and I'll keep you all in my good thoughts that your love and perseverance will carry her through this and all her challenges!

Sara Cohen said...

Hi guys. SO sorry to read how frustrated you are, and I cannot imagine how frustrated and sad all of this must make you. Both of you are doing the best for Hallie, and I hope that one day, you will read this and post and be stunned at how far she has come! Keep up the positive outlook, and definitely keep up the fighting! Sara Cohen

Heidi said...

I'm so sorry. I know the ache of watching your little girl struggle to form the word and their frustration at not being able to share what they are thinking or what they need. It just stinks.

But I believe Hallie, with the help of exceptionally dedicated parents, is going to make amazing progress! And the first joke they make and the first, "I love you!" is that much more precious when they are struggling with something like apraxia.

23wktwinsmommy said...

The past couple of days have been hard on us to. The clarity that Edwin is very delayed has been a little tough...mostly because I'm worried about how the world will treat him...looking far into the future here with a lot of unknowns still.

But you guys are amazing parents, and clearly willing to do anything to help Hallie continue to shine.
You guys are amazing and never ever forget that.

Emily said...

I"m so sorry. It's hard to see your child really struggling with something and know that it might not just be a matter of time until things resolve nicely. Noah gets so frustrated with eating sometimes. There are so many things that he wants to eat that he just can't, and it breaks my heart. Hang in there!

Anne said...

This process of raising a micro preemie can be so frustrating at times. I know you, like I, would do anything to "fix" things and it is hard, at least for me, to accept that we are limited in our ability to set things right.

Your analogy of teaching Hallie to speak to teaching a stroke victim to speak is the same analogy Eliza's feeding therapists have used time and again to describe the challenge of teaching Eliza to chew. The muscles work, they just don't know how to work together and in a coordinated fashion.

I'll be thinking of you all and keeping my fingers crossed for good results from the private speech therapy.

Trisha said...

I know each kid is different, but Caleb has just really started to talk the past couple months and believe me, it's all been on his own terms. Most people don't understand a word he's saying, but I am just thrilled he's making the effort. And his speech therapist doesn't do much with him, so most of this has developed on it's own. Hallie is an amazing little girl, there's no doubt about it. She's so bright and I don't think that there will be anything she can't do. I know that when the timings right, she too will be jabbering away. It's hard to have patience, but just remember that you guys are doing a wonderful job raising her and she's getting the help she needs. Keep your chin up Abby!

Sarah said...

I know this is so sad and frustrating, but you have done so much for Hallie that no matter what, she will flourish under your care. Small words, I know. I hope hope hope that this is just a phase. I wish it was as simple as knowing what to expect but it seems like we all get hit in different directions.

Laura said...

good news on the spew-less month.
i know how hard and frustrating this is with hallie's speech. we struggled as well over the years and still do but not nearly as bad as way back then...still i have to admit i am sometimes surprised how far we have come. it is like a locked door and you have a bucket full of keys. everyday you try a few more keys not knowing when you will find THE key that unlocks the part of her mind that controls her little mouth, teeth, lips, gum, tongue, vocal cords and diaphragm. i can't tell you what the key is because it is likely it different for hallie.
hugs to all three of you!!!

BusyLizzyMom said...

Yippee for less barf, oh how I hate barf and all that it entails. It is good to hear that Hallie is getting some speech therapy and with hope and praying that it will help her to talk. It can be so disheartening at times raising a preemie. Elizabeth is 3 and there are many days I feel cheated that she is going through so much and I long for a day that I could just sit back and not worry about her lungs, her CP, her vomiting, her hearing and the list goes on. I want to be one of those parents for one day who does not sanitize theirs kids hands all day, who can let their child run freely in the park and who is not on edge waiting for another vomit session in public. But in raising preemies we don't have that luxury we are always on edge waiting for something to fall even years later. We just do what we always do hope, pray, argue and find out what our chirldren need to help them to grow and learn. It is a tiring journey but one with lots of smiles and cuddles. Hang in there.