Tech Teaching

I recently talked to Sara at NACD and got the contact information for five other moms with kids on programs. I sent an email to all five and within six hours had received warm and friendly replies from four of the moms. It has been so great to hear from these other moms going through similar struggles and compare notes.
One of the moms, Ashley, explained how she's been using technology to help her THREE kids who are on program. Her program (and mine) call for the use of flash cards with pictures of objects (like a dog, a banana, shoes, etc), flash cards of words printed (for learning to site read) and photos of "everyday life" things (like mom, dad, McDonald's, whatever). It also calls for videos of various things that we are working on like following directions, brushing teeth, playing pretend with toys, etc. Ashley is a genius and has basically combined all of these things into slide shows/movies and stuck them on iPods for her kids with attention grabbing background music. She says they love watching their iPods and at first she wasn't sure if they were really taking in the information, but suddenly they were following the directions they'd learned, they know the planets in the solar system in order, they know the names of various tropical fish, etc etc!!! I can't say how much I admire this mom whom I've never met. She is amazing to be doing what I know is a huge job with not one child, but three!! She has really given me the inspiration and motivation I was in need of.
So, here's what we've got on tap for Samantha right now. We are still on the "play and don't push it too hard" program. I have had an amazing month and a half in that I've been able to slow down and really enjoy bonding with my kids. I've also come to realize just how important Samantha is in my life and how much I am benefiting from having her as my daughter. Having said that, I am ready to move forward. Samantha needs to be challenged and as I notice her getting into more trouble around the house I think she's starting to crave the interaction of doing program.
Inspired by Ashley, last week we went out and bought a flip video camcorder. This cool little contraption has a USB plug that flips right out of the top so you just plug it into your computer when you're ready to download videos. The quality is not great for viewing on a big screen TV, but perfect for my purposes. It also comes with software for editing the videos, splicing them together and adding background music.
We bought a Creative Zen mp3/video player to load her videos and slide shows onto. Now I am just trying to conquer my "old person" syndrome of feeling overwhelmed by all of this technology and put together some good stuff.
I discovered that the best "slide show software" I could find is actually free from microsoft (just have to have a legit copy of Windows). It's called PhotoStory and is awesome. http://www.microsoft.com/windowsxp/using/digitalphotography/photostory/default.mspx
Here's a video I did that Samantha is mesmerized by. It's a simple collage of a day's activities set to music- not extremely educational, mostly just a first video to get her interested in this process (unless you're a grandparent, you will be bored to tears after 30 seconds, so no need to finish the whole 7 minutes. You'll get the gist pretty quick.)
Last week Samantha started an eight week rock climbing class. She was a bit overwhelmed at first, but I think she's going to love it. It's such a great activity for building coordination and focus. She looked so cute in her little harness- I'll have to post a picture once she's really scaling the walls.

Play Time!

A week ago Samantha had her quarterly evaluation in person at NACD. We had been really struggling for the past few weeks because Samantha had been resisting doing program. Whenever this happens a vicious cycle begins: I do not want to even try because I know Samantha will be miserable, so I avoid it and I feel miserable with guilt because I'm not getting program done. Pretty much no one is happy around our house and I internalize all the responsibility. We were also worried because after a short two day vacation away from home, it seemed like our 99% potty trained daughter was now 10% trained. We also felt like she had regressed in speech as she was making fewer attempts at speech than she had a month before. We expressed these concerns to Sara and she had a lot of questions to ask. Finally she started asking questions about Samantha's play time activities and wondered what Samantha's favorite things were to do. After a long thought I admitted that I really don't know what Samantha likes because whenever I have down time from laundry, cooking and cleaning, I feel the urgency to get program activities done and checked off my enormous program list. I sort of hate admitting things like this. It's like admitting defeat in the competition against myself to be the best mom humanly possible. Why is it so impossible for me to "do it all"? Sara responded immediately that we need to throw the checklists out the window and play with Samantha as much as possible. Specifically, I am to do a lot of play that involves language, like tea parties, dolls, etc. We are to casually throw in program activities but no recommended number of times per day, just what we can sneak in while keeping things light and happy. She also explained that as kids on program are "globally three" (this means the various aspects of their development are all around three years of age- the obvious exception for Samantha being her speech) that they hit a wall where they don't want to do work. If it looks, smells, tastes or feels like work they lock down and parents often mistake this as a regression. I can't begin to explain the relief I felt. The idea of "just have fun and play" seems so foreign to me, but also very exciting!
Samantha's recent huge progresses are first that she has attended her church classes for the past three weeks in a row. She has never made it through all three hours of church. I'm sure the teacher is completely worn out by the end, but for Samantha it is huge progress that I can leave her in a room of fifty other kids and say goodbye and walk away and she will sit in her chair and wait for her teacher. I've listened in the hallway and haven't heard a peep from her. Three straight hours of sit still time is huge for just about any kid, but gigantic for Samantha! Also, I must add that she is back to 99% potty trained. She is still holding back on the speech attempts, but I think that will come back soon.
Her second big progress is that she rode some rides at an amusement park with us that she had been absolutely terrified to ride a year ago. I was so nervous to let her even try because I expected the rigid body and look of shear terror that had been there previously, but she did great!
I'd like to quote two people from opposite ends of the spectrum of social skills and intelligence.
First, during Samantha's evaluation as she was playing, Sara looked at Samantha, smiled kindly and said "yeah, you know exactly what's going on don't you?" Very nice.
Secondly, at the amusement park, we waited in a very slow line for the girls to ride the little boats. Samantha got very bored, wasn't feeling well and did some pretty serious whining while in line. Then once she was riding the boat she was all smiles and excitement. When the ride ended and I went to get her, the ride operator came over and said "Is your kid crazy or something?" Yes, some people are really that clueless. I gave her a stink-eye that could have killed a small animal and walked away thinking "Are you crazy?"

Chew Chew Chew

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...

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!

Being a Shut-in can be fun right?

Samantha was doing so great until a week ago when we stopped doing program for various reasons (dentist appointments, out of town guests, Samantha's birthday, etc etc). Now that we have returned to program I feel like she's regressed and it's really not her fault- it's mine. She is just not in the routine of doing program anymore. I think her cognitive abilities are the same, but her focus is totally gone. It's a vicious cycle because now it's harder for me to work with her so I get less work done and she continues to struggle. I see this cycle coming every time we get distracted from our daily routine, but can't manage to avoid it. I think the only answer is to become a complete shut-in. So, when you wonder why I am hard to reach or not anxious to do things during Samantha's awake hours, now maybe you'll understand why. The fun times (ie forgetting about program and pretending I'm a normal mom) just aren't worth the week long battle that follows.
I should throw a little more info in to make sense of the above post. Samantha's "program" is a list of activities that we work on daily to address various aspects of her developmental delays. Some examples are listening to her music (www.thelisteningprogram.com), speech activities, sensory/tactile activities, etc. Each activities is prescribed to last a certain amount of time and to be repeated a certain number of times. If we did every single activity, we would be doing about 92 activities per day (this relates to probably 4 hours of constant learning. how many hours of one on one learning would she be getting in a public school?? Hmm....).
This program was set up by a place called NACD (www.nacd.org). They are located in Ogden, Utah and we have an evaluation in person every three months. Every month between evaluations we video tape her program and review it with our support person (Sara) and tweak her program as needed to maximize our success. In the beginning I was trying to get 100% of her program in every day and it was killing me to say the least. Sara told me that families who get in 50-60% of their program see good results and so 50% is now my goal and it's still pretty tough. I will say though that it makes a huge difference and I believe in the work I am doing with Samantha 100%. She has made a lot of progress in the 7 months that we've been doing this. She started at a sequential processing level of 1 (how many "things" in a row you can process. Take the test for yourself! http://simplysmarter.org/) and we are now working on 4's. That is huge as each level of processing relates to a year of cognitive development (most adults top out around 5-9. Some kids (aka geniuses) on an NACD program are processing in the teens).
Two days ago we added a whole new element to her program after having a Speech & Language specialist evaluation. This is a good sign too because she previously wasn't making enough attempts at language to even bother working on these types of activities. I am completely intimidated at the thought of how to get Samantha to do these new activities as the "speech thing" feels like the final frontier with her. I can break through a lot of things with her, but I am feeling completely humbled at the thought of this and am putting my faith in both NACD and higher powers that this is actually going to be something I am capable of. I have always believed Samantha will talk one day, I've just always thought it would be completely on HER terms. And really it is, but hopefully I'll find the inspiration to know how to prod her along in the right direction.

Opening Post

So, I decided to start a blog to basically record for myself the progress and challenges of working with Samantha. It's 75% for me to remember how far we've come at any given time and 25% to let friends and family in on what we're doing. I'm not very good at keeping up with everyone's blogs, so I will be the last person to be offended if you don't keep up on mine! Thanks to all for the love and support they give us and for the patience and understanding as I live the life of a hermit to help my daughter speed up her development. Maybe one day I'll be able to watch soaps and eat bon-bons all day like other moms! (just kidding, I know it's serious work even with "typical" kids. I have a fiesty two year old afterall...)