We have a couple of new speech exercises we are working on. One is chewing gum. Lori, our speech therapist suspects that Samantha has oral motor planning issues (translation: "has a hard time making her mouth do what her brain wants it to do") and so we need to work to strengthen her mouth, lips, jaw and build more sensory awareness. I think she is completely correct. In the past Samantha has almost immediately swallowed gum and she was not too interested when we started this exercise. After about three days she is chewing her gum and using her tongue to move the gum from one side to the other and all of this with the hugest smile of excitement on her face! I showed Trey and he agreed that it was really cool to watch her chewing gum. It's one of those little things I realized "wow, she looks so different doing this. I've never seen her using her mouth and tongue in this way". I'm so excited! The other interesting activity is that she is using a type of mouth guard called a "myomunchee" (Ryan- heard of this?) to strengthen her mouth and jaw and aid in tongue retraction. I thought the "tongue retraction" was a bit weird because she doesn't walk around with her tongue out or bite it when she chews food, but now that we are working with it I see that she immediately wants to push the mouth guard out with her tongue as soon as I put it in like the guard being in there and pushing her tongue in is making her want to gag. She has made progress with this as well, but we've still got a ways to go. She needs to put it in her mouth, seal her lips around it, keep her tongue in and chew on it. All so complicated for a little girl that can't manage her mouth in a way to properly pronounce her words.
I think the really hard exercises are probably the ones she needs to conquer the most, so this is probably going to be really good for her.
I went in for a filling last week and my dentist must really not want his patients to feel pain because my mouth was very numb for over four hours. As I was driving home I stopped by the bank and tried to tell the teller exactly what I wanted. My tongue felt huge and I really couldn't feel where it was to coordinate where I needed to move it to in order to make the sounds necessary for intelligible speech. I couldn't help but contemplate how similar Samantha's tongue and lips might be feeling to her.
I saw a video on TED (smart/interesting people speaking on a particular topic for 20 minutes or less) tonight about a woman who had a stroke and exactly how that felt and the whole time it struck me how similar the symptoms of her stroke are to Samantha's developmental issues. (You've got to put this on your list of things to do on the internet:
http://www.ted.com/index.php/talks/jill_bolte_taylor_s_powerful_stroke_of_insight.html)
Maybe noone will get this like I did so I'll lay a few things out for you: "not knowing where her body was in space" "feeling like an observer of herself". I feel like Samantha experiences this frequently when she is laughing and enjoying others playing peek-a-boo, but then she will not be able to realize that she needs to cover HER eyes when she is asked to participate or not be able to find her eyes. Alright, never mind, I won't lay it out for you because it's really almost the entire talk that I felt really related to Samantha. It made me really interested in what type of work is done with stroke patients in their recovery and how similar is it to some of the work we are doing... Our focus with NACD is on neurological organization and development in a sequential manner. This means getting things organized and working on the lower brain and moving up. One of the ways we work on this is through a crawling exercise. First we do the deep pressure activity I spoke of earlier to increase her self awareness, I rub her arms and legs with scratchy type gloves on to increase her awareness on a tactile/skin level and then we get down on our tummies and do some true crawling (up on hands and knees is actually creeping). I had heard of this and thought "hmm... interesting" and when we went to do it, guess what?! Samantha could not use her left leg. Crazy!!! She walks around fine, climbs stairs fine, etc etc. What little blip is lurking around in her brain that her left leg will just hang there while her arms and right leg do all the work? Just another sign that NACD is so in touch with what this is all about. You'd think I'd be horrified, but I was actually sort of excited that I could see something concrete like this that I can actually work on. So, by the way, she is now crawling so much better! I can't explain how excited I am to see my five year old crawl around on her tummy using her arms and legs in a cross over pattern.
I recently went to a Don Aslett seminar. For those of you who don't know he is a cleaning guru who's written many books. He gave out a free book about de-junking and I've been reading it and thinking about how all the "stuff" in my house is so distracting to me. I've always known it, but I've been trying to ignore it and limp along with program and being couped up with three kids in the house all day never really feeling relaxed and at peace because the junk is always nagging at me... Let me clarify on "stuff" and "junk"; we are not pack rats, we just have some not-used, excess belongings and I am secretly a neat freak. You wouldn't know it because I don't always have a super tidy house. I just can't wrap my mind around the entire house all at once so I will go crazy on a closet or something and then try to ignore my urge to continue. I've heard of people who live in filth, but are actually neat freaks who are so paralyzed by their own high expectations that they live in a world of filth to avoid failing. I'm not living in filth, but man I would love to have the kids take a vacation without me for 48 hours while I went crazy with a label maker and a trash can. I'm mentioning this because it explains how I've been feeling about doing program lately. I can only manage little spurts of program and then something is driving me bonkers that I need to do or clean and I think if I can just do that one thing I'll be able to focus. Any good tips for how to put on blinders to a messy house while you focus on work that is more important in the grand scheme of things?
Another bright note to end on, Samantha has suddenly become so physically affectionate and is constantly walking up to me, hugging my leg, smiling and walking off. It is great! Just what I need to keep me going. Maybe she knows that...
Tuesday, August 26, 2008
Monday, August 4, 2008
What's "wrong" with your daughter?
Program is slowly looking up. We have been working hard and Samantha is finally starting to re-warm to the routine and even some of the new speech activities. One activity involves flash cards that symbolize a syllable (i.e. a sheep means "baa", ghost means "boo"). If she realizes that I am wanting her to do all the work and say the syllable, she hates this activity, but through the magic of high fructose corn syrup rewards and a lot of excitement from me, she is sometimes forgetting that it's work and a few syllables are slipping out.
Another interesting thing I've noticed in the last two days is that she is finally starting to get some strong little muscles in her arms and especially her legs. One activity involves me squeezing VERY firmly up each toe, foot, leg, then fingers, hands and arms. I squeeze so hard that I cannot physically squeeze any harder and she will just wince a tiny bit. This exercise is meant to normalize her perception of sensation (which is obviously underdeveloped) and develop strength in her limbs, so I am excited to see her finally getting stronger.
So, I know that people feel a need to have a name to use to explain why someone like Samantha isn't developing like a typical child. And if you are one of those people, I'll give you my take on that. Samantha was diagnosed as having Pervasive Developmental Disorder- Not Otherwise Specified. As it was explained to us, the "Not Otherwise Specified" (or N.O.S.) means it isn't necessarily tied to a specific disorder such as Autism, it's simply a developmental disorder that is affecting her in more than one way (i.e. not just a speech delay or fine motor delay). However, people (mostly public school special ed) often want to lump her into "the Autism Spectrum". I have seen ADD and ADHD lumped into that spectrum as well, so it's a huge spectrum and in my opinion more damaging than good to have a label that pulls in so many kids that are so different. There's not one course of treatment to help all these children that are so very different from one another. A parent trying to help their child has to sift through so many things that don't apply to their child to finally find the things that do apply. It just seems lazy to me that the medical community doesn't try harder to give more specific diagnoses to kids based on their exact "symptoms".
If Samantha had cancer, noone would say "that little girl is cancer", they would say she "has cancer". That would lead most people to be open minded and ask lots of questions, "well how is the cancer? is it in remission? under control? horribly painful? is she on her death bed?" In other words, "having cancer" can mean many different things for what kind of life that child will lead. Unfortunately people tend to think "that child IS Autistic or Down Syndrome" or whatever the developmental diagnosis might be, instead of "they have autism or a developmental delay", and then asking open minded questions like "how is she progressing? what ways are you choosing to help her? what are her strengths/weaknesses that caused her to receive such a label? Do you agree with the label?"
I don't know why Samantha is behind and I don't know what is ahead for her, but I do know that she is an amazing little person and in my opinion doesn't fit any label perfectly except "UNIQUE" and I love her for that!
Another interesting thing I've noticed in the last two days is that she is finally starting to get some strong little muscles in her arms and especially her legs. One activity involves me squeezing VERY firmly up each toe, foot, leg, then fingers, hands and arms. I squeeze so hard that I cannot physically squeeze any harder and she will just wince a tiny bit. This exercise is meant to normalize her perception of sensation (which is obviously underdeveloped) and develop strength in her limbs, so I am excited to see her finally getting stronger.
So, I know that people feel a need to have a name to use to explain why someone like Samantha isn't developing like a typical child. And if you are one of those people, I'll give you my take on that. Samantha was diagnosed as having Pervasive Developmental Disorder- Not Otherwise Specified. As it was explained to us, the "Not Otherwise Specified" (or N.O.S.) means it isn't necessarily tied to a specific disorder such as Autism, it's simply a developmental disorder that is affecting her in more than one way (i.e. not just a speech delay or fine motor delay). However, people (mostly public school special ed) often want to lump her into "the Autism Spectrum". I have seen ADD and ADHD lumped into that spectrum as well, so it's a huge spectrum and in my opinion more damaging than good to have a label that pulls in so many kids that are so different. There's not one course of treatment to help all these children that are so very different from one another. A parent trying to help their child has to sift through so many things that don't apply to their child to finally find the things that do apply. It just seems lazy to me that the medical community doesn't try harder to give more specific diagnoses to kids based on their exact "symptoms".
If Samantha had cancer, noone would say "that little girl is cancer", they would say she "has cancer". That would lead most people to be open minded and ask lots of questions, "well how is the cancer? is it in remission? under control? horribly painful? is she on her death bed?" In other words, "having cancer" can mean many different things for what kind of life that child will lead. Unfortunately people tend to think "that child IS Autistic or Down Syndrome" or whatever the developmental diagnosis might be, instead of "they have autism or a developmental delay", and then asking open minded questions like "how is she progressing? what ways are you choosing to help her? what are her strengths/weaknesses that caused her to receive such a label? Do you agree with the label?"
I don't know why Samantha is behind and I don't know what is ahead for her, but I do know that she is an amazing little person and in my opinion doesn't fit any label perfectly except "UNIQUE" and I love her for that!
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