Friday, January 22, 2010

Update-Stephen's ipod touch as a communication device, the dentist and a blood draw

Stephen is doing really well with using his ipod touch and the app that makes it a communication device!

We took the kids to the dentist last Friday. This appointment was a stellar event for Stephen on many levels.

#1-He breezed through x-rays (hasn't been an issue for him in the past couple of years since I started going in with him).

#2-He sat through a cleaning with the electric device they use! He has not allowed them to give him a cleaning for a couple of years. The key to this being a success was that I asked the hygienist if he could sit up in the chair. He associates laying down with either getting a filling or having a tooth pulled. She wasn't able to do the tooth poking and scraping. I think Stephen also liked the hygienist. She was very calm and patient so I made sure he had her for his next appointment : )

#3-No cavities!!! Stephen has had many, many crowns and fillings since I found a dentist that would work with him. His poor dental health was due to being fed pounds of candy a day while he was receiving ABA for a couple of years when he was much younger and the fact that he wouldn't let us near him with a toothbrush until he was about 6 or 7 without it being a battle royale. For the past 4 years Stephen has not only allowed us to brush his teeth but also likes having his teeth flossed and has learned how to rinse and spit with water : )

#4-He used his ipod to communicate!! He used it to let us know he needed to go to the bathroom before and after his cleaning. After he was done with his cleaning he and I went to the waiting room to wait for Pat and Olivia. My poor little squirrel had another cavity due to her severe GERD that even Prilosec cannot tame at times. He started getting antsy and getting a little vocal so I gave him the ipod and he pressed the icon for "I want to leave". So I said, "I know you want to leave but we have to wait for Olivia and Daddy" He calmed right down.

Later that night we took him for a blood draw at the hospital about an hour before he takes his seizure meds so that his levels could be checked. Just like last year, he sat on my lap and didn't even flinch or make a sound when they did it! There are many, many "normal" kids that freak out when they have to have a blood draw. Needless to say, I was very proud of him for being so brave.

He has been using his ipod touch at school with his classroom staff and it is going really well. His teacher told me that he was doing some math work this week and was becoming upset. She gave him the ipod touch and he pressed the "I want computer" icon and she explained that she understood what he wanted but he had to wait until computer time. He calmed down.

Today, he came downstairs and sat on the couch and kept looking at me and was all smiley. I kept asking him what he wanted. He went into the kitchen and opened the cabinet where the snacks are and I figured he wanted a bowl of Cheerios. I pointed to the bowls and he wouldn't take one. Finally, I grabbed his ipod and gave it to him. He chose, "I want" and "to read a dictionary". I never would have guessed that in a million years based on his behavior at that moment. So, we went up to his room and he pointed to his dictionaries. I told him to take them out one by one. He wouldn't. I pointed to a single dictionary and said,"Do you want this one?" and went to the "yes/no" category on the ipod. He pressed the ,"yes" icon and I told him to put in on the floor. I did this a couple times and he pressed the "yes" icon each time. And then he was able to take each one out one by one and make his pile with just my verbal prompting. Then one by one make them into a pile on his bed. He likes to put together "collections" in a big pile and flip through them. He just stood there looking at me like he wanted me to leave. I went into the "hi/bye" category and had him use the "Good bye" icon and sure enough the minute I closed the door behind me I heard him flipping through his books.

I have always said that many times Stephen becomes the most anxious or very rarely, angry, when he is not able to simply communicate his wants and needs. It's not because he thinks he will get what he communicates it is the ACT OF BEING ABLE TO COMMUNICATE his wants and needs that makes him feel better. We all need to be able to express our wants and needs regardless of whether or not we get those things. Just having others HEAR us and ACKNOWLEDGE that they have heard us and UNDERSTAND us is a basic human need. My son is a PERSON with Autism and he has the same needs to be heard and understood. All of us bloggers who share, vent, entertain and try to lead others know how important the act of just expressing ourselves is to our well being.

Tuesday, January 12, 2010

The ipod touch, Proloquo2go and echolalia = communication for my child with Autism

I am over the moon with excitement right now!!! And boy, do I need something to get me excited in a positive way.

We got the grant money for Stephen's ipod touch and app to make it a communication device last Friday. We have been taking our time introducing it to him, mainly because we needed to figure out how it works (we don't need to be the blind leading the blind) and needed to take out unnecessary icons and change some of the labels on the icons, make custom icons, etc. We also don't want Stephen to feel pressure to use it all the time, right off the bat. We want it to be casual and fun and let him decide when he wants to use it along with showing him how it works. We did a demo with him a few times over the weekend. He has been introduced to it more over the past two days at school. He already used it today to request the trampoline and a book.

So, when I read that he used it at school and was very proud of himself I figured I'd try using it immediately when he started to get upset and was doing a lot of finger pointing at the drawer that has his headphones in it. He was getting very upset and almost in tears because I kept telling him "no headphones" and explained to him that they will get broken in his computer like the last two pairs. I made an icon for headphones, but he first tapped the one for music. Makes sense, we have only been letting him use his headphones with his mp3 player since he kept snapping off the plug inside the hole in his tower for the headphones. He was saying, "music". So, I had him tap the headphone icon which says "I want headphones". He continued to get upset and I showed him two icons "sad" and "I feel mad". I had him tap them. He instantly calmed down and went and sat on the couch!

It gets better. He started saying "Popsicle". So, I made an icon for it. He tapped it and it said "I want a Popsicle." and he repeated all the words!! Not just "Popsicle" like he usually says, but a complete sentence. After he ate his Popsicle he said "drink". He went into the "I want" category and then pressed "drink". I showed him the icon I made that said "I want a drink of water" and he repeated "I want a drink of water"!!!! I have always said that his echolalia was him practicing communication and pronunciation. He has been using quotes from movies and songs in the appropriate context here and there to communicate. Now we can make him his own quotes to learn how to communicate in his voice.

This is an important illustration of my theory. The school district has been saying for years that having him use a communication device will discourage him from talking. He is blowing that theory out of the water. Like most of us, he is learning how to communicate by imitating what he hears. He also can read and has a photographic memory from what I can tell. For God's sake, he has been reading dictionaries for years as a hobby. He started reading the adult versions of dictionaries a couple years ago, he picked out his first Merriam-Webster last year at Walmart, the kind that don't have a lot of pictures.

What's great about this device is that it can fill in the blank spots where Stephen knows what he wants to say but can't figure out how to speak it and will give him a model of how to say what he wants to say that he can imitate.

I will try to shoot a video clip of Stephen using it so you can see what I mean.

I am really looking forward to seeing how much he can do with this amazing device : )

Tuesday, January 5, 2010

Keepin' it real-destroying stuff and Autism

Stephen has broken 3 pairs of full ear cover headphones in the last month. They all have had the wires ripped off the jack or the wire ripped in half. No idea how it is happening but I'm sure it's an accident because Stephen LOVES his headphones. Luckily, I stocked up on some very cheap, I think they were about $5 a piece, not very comfy, but are better than nothing full ear cover headphones.

He was rocking in his glider, backwards on his knees, two nights ago and tipped it over and hit his forehead on his old fashioned metal radiator. We were so concerned with his head injury of course that we didn't inspect the chair. By the way, he is fine and was left with 2 vertical lines on his forehead but no bumps, swelling or bleeding thank God! I moved the chair to a safer spot that if he continued his backwards rocking, he wouldn't be able to tip it and if he did, he would hit his cabinet with his books and not get hurt badly. So now the back of the glider is the side you see when you walk in his room and I went to get him ready for bed and noticed that one of the rungs in the back was broken in half on one side and sticking out. Thank God for packing tape. We will try to remove the rung and get a replacement dowel this weekend. If we can't fix it than we will get more grant money to replace it.

We just replaced his computer desk because he was picking off the veneer in many areas and had just worn it out.

We have come to accept over the years that Stephen is going to destroy or break things due to his Autism and just being a young boy. He either breaks things on accident, is seeking stimulation, gets really frustrated or if something has a tear or hole in it than he just can't resist picking at it or making it bigger. He also just wears out his books and DVDs from handling them so much.

He has torn apart chairs, stuffies, broken numerous blinds and curtain rods, broken several glass ceiling fixtures in our last apartment, chewed toys (some were Olivia's), chewed or ripped apart MANY earbuds and headphones, picked holes in walls and peeled off the paper on drywall in our last apartment, chewed or bit holes in clothing, broken a few disc drives on his computer, etc.

I let him know I'm not happy about it but it's hard to get mad at him when he can't tell you why he did it. We explain that what he did was wrong and why he shouldn't do it and try to figure out a way to prevent it from happening if he can't stop himself. For example, he loves to open curtains and blinds and look outside. We got rid of the blinds because he just kept breaking off pieces from pulling them apart to look outside. We replaced all our standard white curtain rods with decorative ones that seem more sturdy. We put tab top curtains in his room which slide much easier over the rods. If he needs to be shown a gentler way of doing or handling something than we do that as a way of trying to prevent something from getting broken again.

Intent is a very important factor when responding to a child who has broken or destroyed something. How can I get really upset with him if he didn't intentionally break something or he can't help doing what he did to break it?

So we adapt. We try to create or buy things that are "Stephen proof" or accept that things like books and DVD's cannot be "Stephen proofed" and will need to be replaced frequently.

Are your kids prone to destroying things? How do you respond and why?

Sunday, January 3, 2010

My son is not a shell, he's really "in there"

Anyone who spends time with Stephen every day knows he is intelligent and has skills. Unfortunately, most people don't interact with him daily and take one look at him, his stimming, odd gesturing, body movements, repeating of phrases and whole scenes of movies and sound effects and decide because he isn't engaging them in chit chat or deep conversation and is acting odd that he is an empty shell. This is one of the cruelest aspects of Autism. Many people with Autism are completely non-verbal or have very little verbal skills. For all intents and purposes, Stephen is considered non-verbal. But he does speak. Most of it is echolalia, repeating the same things over and over, his favorites are lines and whole scenes from movies. Most of his communication is single words and a few two word phrases like, "Drink", "More pasta", "Help", "Book", etc. He does academic work at school and is tested in a statewide test like all the other kids in the state. He can read, probably on a higher level than he is able to prove through testing, knows what order the planets are in in the solar system and does basic math.He is able to learn things through imitation, generalize skills, learn new tasks, follow some directions, has independence in many tasks and understands much of what is said to him and shows through his behavior and actions that he is most definitely "in there" if anyone takes the time to notice.

Now I know he is not a genius. But I swear some people look at him and when he doesn't respond to them in the way that they think he should they literally think that the lights are on but there is nobody home.

Stephen with my sister, "Best Aunt in the world", when my family visited last week for a belated Christmas.

I remember when we really started to see he was "in there". He was able to follow some directions and started imitating. He was able to do more things independently. One set of experiences that really got us excited centered around one of his favorite books when he was about 8 or 9. He had this children's first picture dictionary, still has it with a missing cover because he looked through it so much, and one day he started pointing to all the pigs in the book on different pages so we would label them by saying what animal it was. Then all the rodents. Then all the veggies and then all the fruits. We thought, "Oh my God, he is categorizing things!" Then another time we tried pointing to the different animals and foods he had showed us and he said, "pig" when we pointed to a pig. And he said,"Jelly beans.", when we pointed to them. Since then there have been so many other things he has done to show us he's "in there" that I could be telling stories until the sun comes up.

Tonight I had another one of those wonderful moments.

Stephen and I were playing catch on his bed before bed time with these little stuffy Pooh character heads, Happy Meal toys, that had once been attached to key chains. I modified them because Stephen likes to toss things into the air and into other objects to see them bounce off and I figured he loves Pooh and these won't hurt him or anything else when he chucks them. So, we're tossing the heads back and forth and I stop and show him owl and ask him "Who is this?" and when he doesn't respond I say "This is owl." Now that he knows what I want from him I show him Gopher and ask the same question. At first I thought he said, "Cat." So I said,"No, this is Gopher." Then he said, "Catch." I had been saying catch before I tossed the heads to him every time. I think he was telling me to stop bothering him with the labeling and he just wanted to keep playing catch. So we toss the heads a couple times and I hold up Piglet and before I can ask him who it is he says, "Pig." And I said,"That's right, this is Piglet and he is a pig."

I moved to his glider rocker to make playing catch easier.

His lights were off and the fish aquarium light we bought him for Christmas was on so it was kind of dark in his room. I found Roo's head and asked Stephen who it was from about 6 feet away and got no response. I said, "It's Roo." And he said, "Kangaroo."

This experience I had with him and all the other times Stephen has been able to not just speak but communicate in various ways gives me hope that when we get him his ipod touch, that HE, not his biased doting mother that everyone thinks is exaggerating her severely Autistic son's abilities, will finally be able to prove to everyone that he is NOT a shell, but an intelligent, sweet, observant, really "in there" boy.