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Monday, January 28, 2008

Paperwork, Scattered Thoughts, and Random (well, not so random) fears

It's way late (as usual) and I have tons of work that remains undone (also as usual), but one of the things that does not remain undone is the rather long questionnaire that I had to fill out for Hallie's speech assessment at CHOP. As I was filling it out (in my typically verbose manner), I kept thinking: "I do not want to be doing this, it should not be coming to this..." Of course, that changes nothing. I went through Hallie's rather extensive medical history, and realized how much I have become familiar with all of the terms and jargon associated with microprematurity. IVHs, ROP, PIEs, PDAs, and so on and so on. Ditto on the GI stuff---I can talk gastric emptying and swallow studies with the pros; I know my different PPIs and what drugs might do what (and how to administer them---boy do I wish I knew this back when our GIs never told us how to handle things; that would have avoided a whole lot of issues) and all about aspiration and preemie lungs and the like. As crazy as it sounds, I was hoping that I'd be able to leave it at that---that we'd be entering the world of terrible two tantrums and preschool applications and that I could, one by one, tick off the specialists we would no longer have to see, and I could begin to enjoy our kiddo, our survivor who, vomiting and scarring and all, managed somehow to squeak through.

I know this is selfish of me: how in the world can you be born at 23 weeks and just skate through?

So, here I find myself, learning all about apraxia and speech disorders and contemplating augmentive technologies and learning sign (and, for the record: I suck at languages, I really do. Never mind that I speak Russian, and can read--and could speak--Hebrew, and have ok receptive French if it's not too technical and can order margaritas and agnioletti with the best of them). I still am not a natural foreign language speaker and I am visual-pathway-learning deficient and, that said, I don't care if I do it wrong the first million times, if our baby needs to sign, I'll learn it. Who wouldn't).

There's a huge part of me that hopes I'm jumping the gun here, and just getting worked up in my typical way (sort of like Telly---one of the several words Hallie used once this week and that we may never, ever hear again--does on Sesame Street). And of course I hope that's the case, but my gut says--and has been saying for a very, very long time now--that that isn't the case, and that there is something wrong here. Language builds: you acquire sounds, first vowels and the consonants, and then you learn to string them together, and then you begin to attach meaning, and over time the phonology gets refined and you develop typical syntax, and you are speaking. That is the essence of verbal communication. Hallie's communication is so very different: she has screeches and vowel sounds (right now, "eh"s of various sorts) and did those late, and for quite some time. Then she finally began to babble, but only with the letter 'd.' Then she skipped stages and mixed up her consonants, but what was odd about that stage was that she would use a consonant a few times and then we'd stop hearing it. So she's had "k"s and "shs" and "s" and "d"s (haven't even heard those) and "b's" (most consistently) and a few pop outs with trilled "r"s and "m"s but over all, she just has her b's and she regresses as quickly or as more quickly as she advances. She might say "diaper" for a whole week, and then never again. Same with "paper." Same with "piggies" (though here she dropped the p and the s). And I could probably go on and on but find it too depressing, so I won't.

All of this regression, and these weird pop-outs (saying "up" once and never again) are typical of apraxia of childhood. Some kids get stuck where she is, which is at the no-real-usable-word stage. The form I completed asked me to note her first word and when she used it. What the heck was I supposed to say? Was I supposed to say the single word we heard all day---kitty---which isn't completely lost but this is the first time in at least a week I've heard it, even though she started saying it long before Christmas and used to say it a few times a day when prompted with a picture of a kitty? Was I supposed to say "b" which is what "Big Bird" who used to be "Buh Buh" and before that something that sounded even more like "Big Bird" but hasn't been in a while? Or does that even count, because Big Bird is no longer "B" but is a blank stare from my gorgeous little girl?

And it's not too comforting to think about the long-term prognosis because each case is so very different. Some kids learn to talk and do so fairly well. Others sound like they are non-hearing speakers of English and are yet fairly easy to understand. Others are not quite so readily understood by their peers. And still others require augmentation devices. And then, finally, there is global apraxia, and those who have that disorder find it hard to sign or make any kind of deliberate gesture and are trapped in a world where they want to communicate but cannot. As someone who loves to communicate, I find this all very very frightening and deeply depressing. And what I suppose is most maddening is that we simply won't know for quite some time what Hallie's long term prognosis will look like.

Meanwhile, I can already see some of Hallie's frustrations mounting. She tries to communicate and this sometimes does not work too well. Sometimes we do know what she wants and don't give it to her (as in: I want to stop eating, I want to climb on that dangerous item etc). But sometimes she is trying to tell us stuff and we don't know what it is. Sign has helped enormously: she has learned a few and teaches herself more each day. Tonight, she kept signing 'eat' when she was ready for bed (she wanted her bottle). We hope she picks up 'tired' soon---that will be major. And she can tell us she wants juice and not milk. Or a book---that one she's had for a while. And she is learning 'play.' And she seems so excited---thrilled---every time the Signing Time videos start. So this gives us some hope. But how can we make others learn sign so that she can communicate with them? And what about school---how in the world do we handle that when the only preschool that I have been able to find in the area that teaches ASL and accepts the hearing has a very small class size, no school bus, and is located across the city? What about her peers---how will she communicate with them? Right now, most of the kids around her are still verging on talking fluently, but that's changing quickly. Will they be so tolerant of her jargon when she's two? She's still babyish enough to pass for a baby, but every day she becomes more of a little girl, and I don't want her mind to be trapped in her body. She is so social, so expressive, so amazing, and so bright (she's begun categorizing and sorting her things, she clearly is engaged in some sort of pretend play, and she understands so much), and I don't want that part of her extinguished by the fact that she cannot communicate with others. I don't want her to be anxious or feel inadequate in any way, and she is so sensitive to everything around her.

Anyway, none of this is going to get resolved tonight, and my own anxiety about this is not going to help her much, so I will do the best I can do to advocate for her, to make sure that she gets the help that she needs, and I will try to have faith that her communication skills--whatever shape they take--will allow others to see her for the amazing little girl that she truly is.

And she really is amazing. I don't want this post to preempt the great things that DID happen this weekend. First, on Friday she actually did manage to set her record of two vomit-free (though only one was urp-free) days in a row. We are now up to a total of 6 days in 2008 that are without major vomit. And more importantly, she got to sample her very first french fry this weekend at the kids concert to which we took her, and Adam, Hannah, (and Megan) this weekend. Not only did she love it , but she kept it, and half of another one, down. And she did the same thing today. So this means that we are beginning to venture forth on the food front, and hopefully someday she'll be able to eat more typically. I know that she wants to and that, like the speech, we just have to find her a way to do so safely.

I'll post pictures of the grand event separately later on. For now, I'll just try to pack up my fears and trepidation and get some sleep so that I can be the best possible mama to Hallie in the morning. Even if she never has a name for me, she knows who I am and that my role in life is to play with her until at least one of us (usually me) is too exhausted to go on....



Cathy said...

I am just a lurker, but wanted to comment on your post. Did you know that Signing Time! was started for the very same reasons you fear right now? Rachel and her sister started Signing Time! to help teach others how to communicate with Leah. Share your videos/dvds with your friends and family. Teach them along with you.

I am a 3rd grade teacher. I started a sign language club after school. I was hoping to get at least 25 kids who were interested in learning and I ended up getting 133 who wanted to learn!

I know other parents who have brought in Signing Time! to their schools and had their classmates, and teachers, learn it right along with them. I know that you will always have fears, but knowledge will help you overcome them better!!

My tripet boys were born at 27 weeks and I knew I would be facing some issues. I started signing with them when they were one (wish I had started earlier) and they are doing great now. There are times that I would not have understood their speech if it weren't for their signs to go along with it. It's pretty obvious I love Signing Time!, but it's totally changed our lives for the better. I hope your fears are ended soon.

Anonymous said...

Oh Abby - I feel for your frustration, and Hallie's too. I'm not sure what the future holds, but you're doing exactly what she needs for now. It's hard not to worry about what life will be like for our little ones. We only want the best and the thought of anything less can bring me to my knees some days, but we will be there for them every step of the way, encouraging, praying, praising them for their accomplishments in life, because they deserve it all.

Hallie could be in any category you mentioned, but it's certainly too early to be worrying if it will be one or the other, although that's not something that is done easily. I'll be thinking of you...and your family.

Nancy said...

"She is so social, so expressive, so amazing, and so bright (she's begun categorizing and sorting her things, she clearly is engaged in some sort of pretend play, and she understands so much), and I don't want that part of her extinguished by the fact that she cannot communicate with others. I don't want her to be anxious or feel inadequate in any way, and she is so sensitive to everything around her."

You've answered your own question. Those qualities about Hallie are exactly what will get her to socialize and communicate with others. The method? While that remains to be seen, you can bet it will happen! That's because Hallie has such a drive to communicate, and that persistence will force others to reciprocate communication with her. REgardless of the method.

Ultimately, your goal is communication, and that doesn't necessarily have to be speech. I have worked with loads of children who are nonverbal but have phenommenal communication skills. And they do so in a myriad of ways ranging from sign, to pitcures, to commincation devices.

Have you tried using pictures with her at all for communication? I did this when Caitlyn was around 18 months to 2 yearss old. She had virtually no speech, a few words here and there. But this child could understand every single word I said to her, she just couldn't get her mouth to do the same. I used picture symbols on everything in the house. Mainly the things that I knew Caitlyn would be requesting, for example, on the fridge there were small pictures of juice, milk, cheese, etc. All she had to do was point to the one that she wanted. On the cabinets there were pictures of crackers, cookies, etc. Same concept. I know Hallie isn't into requesting foods, but I'm just using that as an example.

Everytime she pointed to something that she wanted, I would say the word and have her repeat it. Even if it was only an utterance and not the actual word, I praised that for her. So she could understand the methods of communicating.

This saved me more melt downs than you can imagine. We went from having numerous tantrums throughout the day, to one or two that were behavioral and not a result of not being able to tell me what she wanted.

The symbols I used, I had access to through work. A program called Boardmaker by Mayer Johnson. So I didn't have to pay for it as it can be costly (around $400). But there are certainly programs that are available free online. Not to mention the fact that you can take pictures of objects, print them out and use those.

Hang in there! Hallie is still young and you are doing everything you need to be doing to get her communicating effectively.

Nancy said...

Forgot to add that if you are wanting some online sites for picture symbols, just let me know and I can get those together for you!

abby said...

I have already thought a lot about the signs/symbols and cards--Hallie is very visual (gets this from Sharon, I think) and can already tell us a lot that way. Even foodwise, now that she is interested in eating and drinking some things and definitely is getting hungrier (and lets us know by using the sign for 'eat'). I thought about either getting some of the cards that go with the Signing Time DVDs and having her learn both the spoken and the signed word or something like a home-made PECs board (maybe using laminated cards because otherwise she'd eat them!). She is still trying to communicate vocally--just not using any 'words' or even word-approximations that we understand (for the most part) except for a pop-out word or two -- and we're hoping that some of the lost words reappear soon.

Any advice that you have for us would be great!

Heidi said...

Have they mentioned the possibility of apraxia being connected to the feeding issues? I remember when Mo began therapy they asked us if she had problems eating, nursing, etc - something about oral-motor apraxia in addition to the verbal. Mo's therapist now has her do a lot of mouth strengthening exercises like blowing bubbles, blowing through a straw, make faces in a mirror, & chewing various textures. She did not have feeding issues, but they said they're working to help her brain and mouth better communicate so she has more control over forming words...

But Mo's 4 now so of course a lot of that would have to come later for Hallie! :) Though I'm hoping by four she'll be a little chatterbox for you.

Kellie said...

I've come to find that the unknown is often one of the most suffocating presences in the micro-world. Hallie is everything you said -- bright, social, AMAZING. This evaluation will get you assitance and possibly *some* answers but just as you said, it could be some time before the outcome of her speech issues are totally known. I know that the two of you will be the best advocates that Hallie could ever have in this entire world.

Between 12-18 months Eli was having issues with speech (well more issues between those times). His therapists had us take pictures of as many items in our household including people in our lives, food, furniture, videos, characters, utensils, etc. I then had them printed out, laminated, and binded into a book. We worked with that book day in and day out naming and identifying the items for months on end. Eventually progress was made. This type of picture book could be helpful to ease some of the frustrations Hallie is having in her communication. We even took pictures of Eli sleeping, eating, crying, laughing, playing, reading, etc so he could choose what activity he felt like doing when he couldn't verbalize it.

If you need anything don't hesitate to ask. (((HUGS)))

Jennifer said...

I find the loss of control in parenthood the hardest to deal with - I'm so tired of knowing I have no/minimal control over certain aspects of her development and I don't know if I"ll ever come to terms with that.

I hope you get so good help from CHOP and that your fears will be lessened :-)

Sara Cohen said...

Hallie is so wonderful. It must be terrifying to face such an unknown future, but she is a survivor! She will bring you joy and happiness no matter what she can verbalize, and the rest of her personality will fill in where her words leave off! thinking of you three and hoping for some comfort and answers for you! Sara Cohen

Sarah Furlough said...

Abby: You and Sharon are doing such an amazing job with Hallie. I know it is so easy to get bogged down with worry, but I know Hallie will continue to amaze everyone!

BTW, Cooper has JUST started talking more. I constantly worry about his speech, but I feel like everyone just says "he does well for a 25-weeker." Honestly, in the last month he has really taken off with his speech. I try not to obsess about it, but I'd be lying if I say I don't worry.

We still guess a lot of the time to figure out what Coop is trying to "tell" us. It's obvious he's delayed, but I am encouraged that he's starting to make progress.

I am hoping that Hallie will do the same, with time. I'm sorry that this is one more thing to add to your list of concerns. It's just another reminder of how cheated preemie parents are. There is literally ALWAYS something to worry about.

Keep your chin up, you have an amazing little girl!