Monday, May 31, 2010

Liam's NACD program

In response to the many folks who have inquired about NACD (National Association for Child Development), wondering "what is it exactly?", I decided to do a video blog to try and demonstrate a bit of what this organization has to offer. We began working with NACD for Liam this past October. I became interested in this approach after reading a book titled "The Brain That Changes Itself" by Norman Doidge, which is about the plasticity of the brain and, more specifically, how neuro scientists discovered that the brain is plastic at any age. I then went on to read "What to do About Your Brain Injured Child" by Glenn Doman, which chronicles the story of how Mr. Doman pioneered interventions to help severely brain injured children by directly treating the brain using the knowledge and understanding of brain development and principals of brain plasticity. These books, along with my google research and hearing from other families utilizing this approach, got me inspired to seek out neurodevelopment therapy for Liam. We settled on NACD, which is headquartered in Utah, but comes to Seattle every three months to do evaluations on their clients in this region of the country, because they seemed like a very well rounded program that could offer us guidance in all areas of Liam's development and need. I also liked their price structure, which is basically paying dues each month, but this money goes toward re-evaluation every three months and unlimited support in between. I've been kind of pioneering my own program for Liam, based on various principals of specific therapies, for a long time and really liked the idea of having an organization giving me specific activities, techniques, and goals. I also liked that we would get an updated evaluation and new program every three months. That all sounded great to me!

NACD provides neurodevelopmental evaluations and individual programs that consist of several activities parents run at home. The activities are eclectic and are chosen to target specific areas of the brain that need input to bring about change for higher neurological functioning. A neurodevelopmental evaluation basically assesses the person's level of functioning in the areas of visual, auditory, tactile, mobility, language, and manual competence. It looks to determine at when stage of brain development in each of these 6 areas is the person functioning from lowest (medula and cord) to highest (sophisticated cortex). For many people with brain injuries, development is scattered across these areas and even within them. It's my understanding that a program such as NACD seeks to offer targeted intervention at the lowest brain level that shows incomplete development. This helps to bring about a more organized and efficient brain that is capable of learning easily. After the neurodelvelopmental evaluation, NACD emails a very detailed program of specific activities to be run with Liam daily. Many of these activities are run more than once per day. NACD identifies a frequency and duration for each activity. To bring about permanent change in the brain, it needs specific input with a specific frequency and duration, provided over time with good intensity (motivation on the part of the child). Random input usually will not get the job done. We also have a few activities targeting academics and, as Liam advances in his development, NACD can offer more academic programs for Liam.

Our program has over two dozen activities to do with Liam, with most activities being run two times per day. While the duration for each activity is usually quite short, 1-2 minutes, it usually takes the bulk of Liam's school day to complete. We do have one activity with a duration of 20 times per day, which is a real killer! The most difficult thing for us is keeping Liam's motivation up. Certainly, if his mind is not in it, we might as well be doing nothing. We don't always achieve good motivation and we aren't always able to get all the activities completed, but that is to be expected. We, and Liam, do the best we can. I've made some video of some of Liam's activities to help show what it looks like. Most of these are a couple of months old, as I haven't gotten around to putting this together until now. However, it will give you a reasonable idea of what we are up to each day and, if you are a parent interested in exploring this type of intervention for your child, I hope it helps to demystify it a bit.

Click here to view the activities with descriptions on youtube.








Tuesday, May 18, 2010

Blades of Ambiguity

I never really gave ice skating much thought. Where I grew up I didn’t know anyone who ice skated. We had no rink and the winters weren’t cold enough to freeze any bodies of water. But in Portland we have malls with indoor ice rinks that run all year long. We take the kids to the mall quite frequently. We all go for different reasons; Angie goes for the shopping, Claire goes for the candy and gumballs, Liam goes to ride the escalator or elevator, and I go for the live piano music in Nordstrom….actually I just go because everyone else is going. But as we have gone to the mall all these years Claire started noticing the ice skaters there, so we would often stop and watch the skaters and both kids were really into it. Claire got really interested in wanting to try it. We kept saying that we would try it and if she liked it she could take lessons…we said that for over a year and never got around to it. Angie is the only one who had ever skated before and I was sure that if I got out there it wouldn’t be pretty. So we just kept putting it off.
This last New Year my sister was in town and Angie had my sister’s two girls at our house with Liam and Claire while I was at work. Angie called me and said “When you get home from work, I am going to take the girls Ice skating and you can hang out with Liam.”
“Sounds good.” I said.
“Oh wait…” She said.
“What?”
“Liam just heard me say that and now he thinks he’s going. He’s jumping around saying ‘skating Skating!’”.
“He’s not gonna want to skate is he?”
“I don’t know he’s pretty excited.”
“Well we’ll figure it out when I get home.” I said trying to think of a more enticing activity for Liam.

When I got home Angie told me that Liam was running around practicing skating jumps and leaps and wouldn’t stop talking about skating. So we decided to all go to the ice rink and if Liam still wanted to skate we would put skates on him. We predicted that once he got them on and wouldn’t be able to walk very well he would want them off and I would just take him to ride the escalators until the girls were done.

We put the skates on him and he sprang right up and started walking straight to the ice. He wasn’t even wobbly. We couldn’t believe it. We had to stop him until everyone was ready. That also meant that I had to get some skates on, but I figured that once Liam got on the ice and realized it was slippery, he would want to get off and go ride escalators. I put my skates on and walked in them without wobbling. I always envisioned my ankles snapping in half as soon as I walked in ice skates, but I was surprisingly stable…and tall.
So, we were all ready to hit the ice. Angie and our two nieces were the only ones who had ever skated before so Liam would go with Angie, and Claire could be with her cousins and I was on my own. Liam got out on the ice with Angie and, to our shock, was not only thoroughly enjoying it but he stayed upright. He did hold tightly to Angie but he wasn’t slipping and his feet were firmly under him, and best of all, he was giggling with enjoyment the whole time. I followed behind Angie and Liam and was doing better than I thought I would. I stayed up and kept up and it was a lot easier than I thought it would be…I was extremely graceful…in my own mind…where it counts.

We all skated for about an hour and had a great time. It was a wonderful surprise to realize that Liam could skate and enjoy it so much. We felt like we had found a great new activity that we all could do together. Afterwards Liam kept bringing it up and would ask to go skating every day. I was also anxious to get back out there too. Over the Winter break we went skating three times and each time we had a blast. Liam was actually better than Claire at that point but both kids were having fun. I, too, was really liking this new activity and getting better as Angie skated figure eights around me.

And then the Zamboni made its first appearance on the ice. If you’re picturing a large baked pasta dish sliding across the ice I must explain that a Zamboni is a big machine that comes out on the ice between skating and smoothes the ice out. Liam loves any kind of big machine so for him to discover that not only does he like skating, but he also gets to see another huge machine while he is there, really sealed the skating deal for him. From then on all we heard from him for days was “Skaning? Zambowing? Yep yep gonna go skaning. See the Zambowing.”

School started again for Claire and since Liam was home schooled and I was newly unemployed at the time, Angie and I would take him during the day. It was really special for him to have us both skating with him and he was loving it. We bought him a little toy Zamboni that he played with all the time until he broke It, as expected, and then he played with it some more. We were so excited about Liam’s enthusiasm that we got a little overly enthusiastic about Liam and skating ourselves.

We asked Claire if she wanted to take lessons. Of course she said yes. We also decided to put Liam in lessons. We figured since he really liked it he could get used to lessons as he has gotten used to many other group activities he has done in the community. We knew it could be a little rough for him (and the instructor) at first but he would adapt. We continued to go skating about once a week and signed the kids up for lessons that would start shortly.

When it came time for lessons we went in with great anticipation and hope that Liam would really like the group atmosphere and enjoy getting better at skating. We talked to the instructor about his deficits with language and some comprehension. She seemed a little concerned but willing to work with him. Angie put her skates on just in case she needed to go out there with him. When the class started we sent Liam out to the ice with the instructor. That was our first mistake. Liam did not understand why he wasn’t just going skating with us as he had been doing. He went out there but immediately dropped to his knees and began crying. We let the instructor try to get him back up and work with him but it only made him more anxious and he just cried harder saying “No? No?” Angie went out there. Liam was relieved to see her and he calmed down a little bit. Angie tried to get him going with the class telling him she would stay with him, but it was too late. Liam just wanted her to take him away from the class and off the ice. He was fine the rest of the time just watching Claire and the other kids in the class. After the class was free skate time and Liam was, for the first time, hesitant to skate. Immediately I was thinking to myself “Did we push it too hard? Were we too overzealous about the skating? Did we ruin it for Liam? How much water does a Zamboni hold?” We didn’t want Liam to leave that time with a bad taste in his mouth so we took him out on the ice anyway despite his minor protests. He actually did go out and he skated but not with the same delight he had prior to the lesson. I think he didn’t trust that we were not going to try to drop him with some stranger in a class. We would go around once with him and he would say “Off? Watch?” Meaning he just wanted to watch the other skaters and not skate himself.

Angie and I talked about what we should do and decided we would take him skating again between then and the next class just to see if he was still liking it and if it went well we would try the class the next week but Angie would go out there with him from the beginning and stay with him. He was fine when we took him skating again but seemed to be starting developing a little anxiety around it. He wanted to get off the ice frequently and would continuously ask for the Zamboni. I didn’t have my Zamboni license or else I would have gotten it for him. We tried the class again with the new plan but Liam just wouldn’t have it. He immediately threw a fit and wanted off the ice. The class wasn’t for him. Liam was communicating the best he could that he just wanted to skate his own way and just couldn’t see why we had to push it beyond that. And we realized he was right. The whole skating thing should just follow what’s natural for Liam and there was no point sucking the joy out of it by pushing him. We were just so surprised and delighted at his initial ability and enthusiasm that we really wanted him to ride that confidence to a new level. Claire stayed in the class and loved it. We had already paid for Liam so I took the remainder of his classes (before you go picturing a 45 year old man in a class with 6 to 10 year olds, I was able to transfer Liam’s lessons to an adult class).

The whole skating thing got a little shaky for a while. Liam talked about skating and Zambonies all the time. Claire had class every Wednesday night and we would all go and we would all skate afterward. Angie would sometimes take Liam during the day when she was home schooling him. But Liam was getting a little obsessed with skating. Actually he liked talking about skating more than actually skating at this point. He would constantly ask to go but whenever we would go he mostly didn’t want to skate. He would go around once and then want off the ice and he continually asked for the Zamboni. This became a sort of pattern and it was starting get on our nerves and it was starting to seem like skating was not healthy for him at this point. We decided to keep him away from skating for a while and see if he would calm down. Angie and I would take turns taking Claire on Wednesdays and Liam would stay home.

After a few weeks Liam stopped talking about skating. We tried to not talk about it in front of him too much. We were still determined that this could be a family activity and we didn’t want to take Liam away from it forever. We just felt he needed a break from it to regroup. We decided to take him again and see how he did. We approached it much more matter-of-factly and I think this helped Liam. If he wanted to just watch that was fine and if he wanted to skate that was fine too. He wanted to skate. He was back to enjoying it and smiling again while skating. The anxiety was not gone but much more manageable. He was happy to stay on the ice and was not asking to get off the whole time. He still wanted to see the Zamboni run and would bring it up frequently but if it didn’t come out he was OK with that.

So that’s where we are with skating now. Angie skates like a pro, Claire is advancing in her class and still loves it, I continue to develop my sweet moves mainly because I’m too old to get embarrassed any more, and Liam just does what he does, making it as clear as he can that life is too short not to enjoy it on your own terms.

Wednesday, May 5, 2010

Liamese

Liam has come a long way with his speech. He used to not be able to form complete words. For example his word for “dog” was “da” and his word for “bubble” was “ba”. He can say those and a multitude of other words clearly now with no problem. However he can still be pretty hard to understand when you are not around him all the time. Even Angie and I have to ask Claire to translate for us occasionally. So I got to thinking it might be helpful to put together a little ”Liam to English” dictionary to help rectify some of what he is saying with what he is meaning. I hope those who encounter Liam find it useful.

Skaning: Skating, let’s go now.

Zambowing: Zamboni (almost as cool as an auger).

Want some piece?: May I have a piece of gluten free bread please?

Jimjax: Gymnastics (old style)

Naxtix: Gymnastics (new style)

Gudunuh!: Godammit! (Not sure where he learned that)

Ehvay: Elevator (could ride it all day)

Escaway: Escalator (wonders why we can’t have one in our house)

Baze on?: Will you please help me put my roller blades on so I can skate through the house?

It’s poop in there: I see some dog poop on the ground.

Frubie?: Can I please listen to the “Free To Be You And Me” CD (for the bazillionth time)?

Tolstoy: Toy store, or the movie “Toy Story”

Toucha pwena: I know I’m not supposed to touch the printer but I really want to. I’ll try my best not to, but I can’t promise anything.

Chester sit: Sit Chester (generally repeated even if Chester is sitting)

Stwabee: Strawberry (favorite fruit)

Honey poe: Home Depot

‘Vie store: Movie store

Go the store? Go the park? Go skaning?: I’m bored

Go the store? Go the park? Go skaning (with hitting)?: I’m bored and hungry

Stows?: May I please listen to The Rolling Stones?

Dave: Any friend of mine that comes over

Pay: Computer (as in “please ‘pay’ for the computer I’m about to break”)

Seeve up?: I want to play the game where you pull your sleeve up and I rub my face on your arm.

Spinko?: Can we play in the sprinkler even though it’s February?

Chawka muk: Chocolate almond milk (new favorite drink)

Smoomie: Smoothie (old favorite drink)

Pasta tin tin tin: Pasta (not sure what tin tin tin means)

Churchy: Turkey (I guess he assumes it’s been dipped in holy water)

Koont: Anything from Ikea (see past blog entry titled “Sunday”)

Cash Cash: Cash Cab (one of his favorite TV shows. No idea why he likes it)

Jobs: Dirty Jobs (Another favorite show. Easy to know why he likes this one…)

Sowie: Cereal

It’s gonna go fast!: I’m excited

It’s gonna go fast (with hand flapping): I’m too excited

Ah voo: I love you