In answering a comment on my last blog post, I found myself admitting something, out loud, that I haven't let myself say for about six years. I didn't even realize how long it had been, or that I was about to say it in that moment, until the words appeared on my screen.
"...Despite the mountain of evidence and opinion against the idea, I honestly believe that one day, she will be able to talk. Perhaps not as clearly as the rest of us, but I don't think this is as good as she'll get, not by a long shot."
It's funny what the heart holds onto and whispers quickly and quietly while the brain's not paying attention. It's funny where the agnostic can still find faith.
Damned if god - or some kind of expression of the god concept - can't be seen in that little girl's face, Rob.
ReplyDeleteYou know, Rob....I don't think your faith has anything to do with any sort of god. It's your faith and belief in what your daughter is capable of. And she's capable of a lot!
ReplyDeleteTo me, she does talk – we just don't always understand what she's saying.
ReplyDeleteI'm sure that her speech will continue to improve over time as she learns more workarounds to make herself understood (like the big exhale for the H). In the meantime, we'll just keep trying to learn the language as she speaks it - with her BBoW, with her awesome expressive storytelling, and however else she chooses to share with us.
To lose that hope would be to give up on Schuyler. It's that hope that's gotten you where you are now with her. Without it, what would you be fighting for?
ReplyDeleteKeep hoping! My hunch is that Schuyler's speech will probably improve. My daughter Elaine (who was born with microcephaly) has significantly delayed speech. She learned ASL long before she could speak. When she was younger she too was unable to make many consonant sounds. She's received speech therapy for almost 15 years (she's almost 18) and her speech continues to improve with time. While Elaine will never be able to speak as clearly as you or me, she has progressed to the point where most people can understand much of what she has to say.
ReplyDeleteI just finished reading your comment in Schuyler's Monster about the term broken. When Elaine was born I also used that term. That's how I felt about her condition - she was a broken child. Only recently have I used the term special needs. I think another reason I initially used the term broken was that I remembered a song about kids with disabilities I heard Claudia Schmidt sing on A Prairie Home Companion around 1982 - I'm a Little Cookie, written by Larry Penn. That song refers to kids with disabilities as being broken. And I often remind myself that even broken cookies taste as good as unbroken cookies.
By the way, the medical experts predicted that Elaine would live in a near vegetative state if she lived at all beyond her first few months. Today, she's anything but vegetative. While medical experts can provide some valuable information and insight, with rare conditions like Elaine's and Schuyler's they are often wrong.
ReplyDeleteWe believe too, Rob.
ReplyDeleteWe believe in Schuyler, and you and Julie.
You all not only beat the odds, you smack them down and stomp them senseless just about every day.
It's y'all's faith in each other that we all believe in most.
me, too.
ReplyDeleteI know just what you mean. In my heart, I have hope that my boy will also really talk. When he was very young, his neuro said he'd have speech, he'd sound like a deaf person. I think Schuyler's speech is more intelligible than that, I hope that Max will achieve that AND more. I think Schuyler will—she is still so young, and so smart.
ReplyDeleteIf you have a sec, can you weigh in on my blog today? I'm putting together a bill of rights for parents of special needs kids, and would LOVE your input.
Seeing Schuyler in that video was eye-opening. She has the DRIVE to speak, she has vowels that are right on or approximations. Familiar listeners understand her. Though research is a great thing, there is always professional judgement, and who is more professional than Dad to make that prediction? I would never promise anything or make very concrete projections, but I think the data that is there would indicate an upward trend for Schuyler's speech. She has made gains, surely differently, and maybe much "lower," but somewhat parallel to what neurotypical kids are doing (without knowing her journey I am just speculating here). Why would she not continue to make growth? I always say we never have a crystal ball, but sometimes we might see some glimmers there of things to come.
ReplyDeleteRobinSLP
Faith in our kids is all we have really. Do our best and give them all we can (best teachers, settings, etc), but as long as we push and be the advocate they need, they will survive and thrive. I'm so glad they have the school they do, and support of others like them!
ReplyDeleteHope we can all get together this summer. Your blog is wonderful, we love to see Schuyler in this house!
Jennifer, Cassandra's mom
Who could fail to believe in that amazing, beautiful child?
ReplyDeleteIt's the faith of parents that inspires miracles in children. It has to be true, because I'm holding the same hope.
ReplyDeleteThe moment you let go of your conviction of what she can do and will do is the moment you stop giving your entire support to it. What would be the point of trying if you truly believed it wasn't possible?
ReplyDeleteI have to say that I was very impressed when I watched the video of Schuyler at the restaurant. She vocalized better than I expected, better than my daughter Megan. Megan's SLP thinks eventually Megan will speak, although she expects her articulation will always be poor. So, we keep working on both producing sounds, and using her talker. Megan's little brother who is 5 prays every day that Megan will talk. I wish I could say I have faith that she will, but I do hope. I think you have reason to as well.
ReplyDeleteWell, the thing is, when she was diagnosed, and especially after she began using her device, our energies shifted dramatically, from working towards her developing verbal speech to her finding an alternative way to communicate, and that focus still hasn't changed.
ReplyDeleteA lot of parents give up on their child being able to develop actual verbal speech because it's the right thing to do. If your kid is never going to talk, as many are unable to do, then putting your energy into that isn't very helpful. So it's not as if trying to get her to talk is the only way to support her or believe in her.
But it's still the dream I hold onto, even as we work towards her other methods of communication. And like everything else, if she DOES ever talk, it'll be because SHE found the way. All the rest of us can do is put the tools in front of her.
Wow - just watched the storytelling video - should have done that first. She's amazing! She's trying so hard. I think my daughter has basically given up on making speech sounds unless we make her - it's just too hard. If determination plays a part in a final outcome, and I think it must, then I think you have every right to think she will talk. You have one very determined, and amazing, girl.
ReplyDeleteThat is such a wonderful expression on her face!
ReplyDeleteCan't remember if you talked about this before, but does Schuyler do any formal speech therapy? The brain is still very plastic at her age, and just the repetition can create new neuronal connections/pathways...
I think there's some level of diminishing returns after puberty kicks in, in terms of the brain's plasticity, so the earlier, the better...
(I loved the video. I haven't seen Coraline, but I recognized Schuyler's "long arms" description from the trailer...)
She's been in speech therapy since she was two. Her SLPs now in Plano are awesome.
ReplyDeleteI hold on to the same dream. My son is four and has never spoken one word. That's just one of many monsters he faces. I refuse to give up hope...
ReplyDeleteUm, yeah. I look at kids with more obvious disabilities than my son has, and I find myself thinking, Whew! We really dodged a bullet! Thank goodness we're going to outgrow this! Because, you know, kids outgrow brain malformations and whacked DNA All. The. Time.
ReplyDeleteWe all hold onto those secret hopes. All of us.
ReplyDeletemany people can talk. the question is how well she'll be able to communicate. if we just care about the making of noise... we forget that it is what we do with it that is important. she communicates, and with your help will learn to communicate well... perhaps with voice or without voice... better that than having the ability to speak but nothing to say.
ReplyDeleteWhat I loved the most about the video was how passionate she is! You could tell she was so excited about the story. I think that's what always gets me in the videos - whether or not you can understand her words, you can clearly see her emotion and the animation in her face, her eyes, her movements. I'm not sure if it's more inspiring or heartbreaking that she has that fire in her but isn't able to get everyone to understand her.
ReplyDeleteWith that excitement for life, she will find a way. You have every right to believe her possibilities are endless.
She's already made great strides. She speaks some phrases very clearly. Considering that much of communication os non-verbal and considering that Schuyler is a bright girl, I think she'll manage to make herself understood in a speaking world very well, with or without the BBoW or a similar device.
ReplyDeleteHey Rob, I just had a thought. There are a lot of really good speech-recognition programs available. I used one when I was younger and had a lot of difficulty typing. I'm wondering if there are any that could be adapted to recognize Schuyler's speech. I have no idea if this is possible, but if it is, it could open up a new avenue of communication for her.
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