Tuesday, June 17, 2008
Ben interacts with kids at FunStop!
Today we went to Fun Stop- it's an indoor play place. A little boy about Ben's age immediately began following him around. Ben picked up on this and thought it was funny. Ben began interacting with him and playing! "Follow me", "You go this way, and I'll go that way", "Let's go down the slide", etc, etc... So much I couldn't even see. I couldn't believe it! This was the first time I had seen him play with kids, let alone kids he didn't know! And this was the whole time we were there! Of course then another older little boy came along and wanted Ben and his "friend" to play Batman. He wanted Ben to be Batman. Of course Ben has no clue who Batman is, and immediately started speaking gibberish. The little boy said, "Do you speak English?" But Ben played the game and chased the kids anyways... Batman or not.
Thursday, June 12, 2008
Ben played at school!
I wanted to be sure to write this one down- Ben's first time playing with other kids! The teacher told me yesterday at school that he played for nearly 30 minutes during free time at the kitchen/house area PLAYING/interacting with the other kids. That means talking to them! We have been at this school almost a year and this is the first time he's ever done this! This is huge!
Ben usually paralell plays, but doesn't usually actually play/interact. He just prefers to do his own thing. Now at home, he's very social with us and adults. He just hasn't found how to carry that over and generalize with his peers.
Maybe we're getting there?!
This morning he got up at 3:30am and didn't go back to sleep. Uggg... I think maybe he's getting too much sleep. The new med makes him tired, so he is taking a nap which is great, but sleeping 11 hours at night then a 3 hour nap is too much sleep. Now that he's finally getting over our CA trip last week hopefully that will become more normal and he'll be less tired.
This morning Ben picked up a piece of his egg at breakfast and told me it looked like Kentucky. Such a funny guy! :)
Ben usually paralell plays, but doesn't usually actually play/interact. He just prefers to do his own thing. Now at home, he's very social with us and adults. He just hasn't found how to carry that over and generalize with his peers.
Maybe we're getting there?!
This morning he got up at 3:30am and didn't go back to sleep. Uggg... I think maybe he's getting too much sleep. The new med makes him tired, so he is taking a nap which is great, but sleeping 11 hours at night then a 3 hour nap is too much sleep. Now that he's finally getting over our CA trip last week hopefully that will become more normal and he'll be less tired.
This morning Ben picked up a piece of his egg at breakfast and told me it looked like Kentucky. Such a funny guy! :)
Tuesday, June 10, 2008
SO much News!
Hello all- Sorry it's been a while since I last updated you all...
First things first- I went to Chicago recently to attend Autism One (second year in a row). It was amazing once again- I learned so much and how behind we really are here in OK. Prior to that, we really had begun having some significant behavior problems with Ben. Sometimes it seems similar to the challenges my friends with fiery 2 year olds have (meltdowns, tantrums, biting, hitting, etc), but compounded with autism and an almost 4 year old, it's a BIG struggle. We got to a point where we couldn't find anything that was reinforcing "enough" for him or consequence great enough for him. We knew we needed more help in terms of our ABA therapy (behavioral), but our provider is spread SO thin here in OK that she just can't spend the required amount of time with each family that is necessary. So I began to search out other options in terms of ABA consultants.
I also found CARD- Center for Autism Research and Development. It is based in CA, with clinics all over the country and internationally as well. They have a clinic inside the Thoughtful House in Austin, where Ben's doctor is located. I knew they had a good reputation, and I gave them a call. They have a "Challenging Behavior Clinic" in CA- I called and basically said, "I don't know what you all do there, but here's the problems we're having...". They told me they could help, and off to LA we went. Ryan obviously couldn't take a week off from work, so Ryan's mom, Ben, and I headed off for a week. Ben really "threw them for a loop" so to speak, and by day 3 I was getting so discouraged! I thought... If THEY can't help us, who can?
Once we finally figured out the root cause of his meltdowns- having to control everything- we could move forward from there. So thousands of dollars later I leave with some laminated red and green cards- red means you have to do what I want and how I want it. Green means it's your turn and we can do whatever you want and how you want it. As long as Ben knows his turn is coming, this seems to be working. Day 5... so far so good. By no means are we tantrum-free, but we are seeing a glimmer of hope in the behavior department.
The good: conversation has exploded! Little things like, "Oh Man!", and "sorry about that". And he's using them appropriately! He's become quite the funny little man. CARD was so impressed with his vocabulary. It's pretty cool.
In Chicago, I heard the founder of CARD, Doreen Granpeesheh, speak about a new ABA program that they would be launching called SKILLS. They have been working 5 years, and spent millions of dollars on this program. It will be an online ABA program individualized to each child's needs and training for therapists. It looked so cool! When we went to LA, they actually approached us about it- they had been searching for a year or so for the right family to do a test pilot program with, and they chose us! We are finalizing the details, but it looks like an amazing opportunity for us and especially Ben. And we know they have a vested interest in us succeeding in the program as well. How ironic that we were just at the crossroads of needing a new program/provider... All I can say is GOD...
On the medication front, we recently tried a med called Atenolol- it is a blood pressure drug, but also shown to help kids with autism/add/adhd. We did not see any improvements with Ben and some bizarre side effects, so we stopped. We are now trying Clonadine- a very small dose. We are trying to find the right balance- something to help take the "edge off", but not make Ben a little zombie! It does make him sleepy (of which a little is good), but we need to find the right balance. We are still doing all the other dozens of supplements. We have also been doing LDN- Low Dose Naltrexone- it is an immune system drug- and I think we have seen some significant improvements from that. All in all, we are still trying to find the right mix of therapies, supplements, and meds. All of which seem to be helping tremendously! I know you will all be so amazed when you see him next. Take care.
First things first- I went to Chicago recently to attend Autism One (second year in a row). It was amazing once again- I learned so much and how behind we really are here in OK. Prior to that, we really had begun having some significant behavior problems with Ben. Sometimes it seems similar to the challenges my friends with fiery 2 year olds have (meltdowns, tantrums, biting, hitting, etc), but compounded with autism and an almost 4 year old, it's a BIG struggle. We got to a point where we couldn't find anything that was reinforcing "enough" for him or consequence great enough for him. We knew we needed more help in terms of our ABA therapy (behavioral), but our provider is spread SO thin here in OK that she just can't spend the required amount of time with each family that is necessary. So I began to search out other options in terms of ABA consultants.
I also found CARD- Center for Autism Research and Development. It is based in CA, with clinics all over the country and internationally as well. They have a clinic inside the Thoughtful House in Austin, where Ben's doctor is located. I knew they had a good reputation, and I gave them a call. They have a "Challenging Behavior Clinic" in CA- I called and basically said, "I don't know what you all do there, but here's the problems we're having...". They told me they could help, and off to LA we went. Ryan obviously couldn't take a week off from work, so Ryan's mom, Ben, and I headed off for a week. Ben really "threw them for a loop" so to speak, and by day 3 I was getting so discouraged! I thought... If THEY can't help us, who can?
Once we finally figured out the root cause of his meltdowns- having to control everything- we could move forward from there. So thousands of dollars later I leave with some laminated red and green cards- red means you have to do what I want and how I want it. Green means it's your turn and we can do whatever you want and how you want it. As long as Ben knows his turn is coming, this seems to be working. Day 5... so far so good. By no means are we tantrum-free, but we are seeing a glimmer of hope in the behavior department.
The good: conversation has exploded! Little things like, "Oh Man!", and "sorry about that". And he's using them appropriately! He's become quite the funny little man. CARD was so impressed with his vocabulary. It's pretty cool.
In Chicago, I heard the founder of CARD, Doreen Granpeesheh, speak about a new ABA program that they would be launching called SKILLS. They have been working 5 years, and spent millions of dollars on this program. It will be an online ABA program individualized to each child's needs and training for therapists. It looked so cool! When we went to LA, they actually approached us about it- they had been searching for a year or so for the right family to do a test pilot program with, and they chose us! We are finalizing the details, but it looks like an amazing opportunity for us and especially Ben. And we know they have a vested interest in us succeeding in the program as well. How ironic that we were just at the crossroads of needing a new program/provider... All I can say is GOD...
On the medication front, we recently tried a med called Atenolol- it is a blood pressure drug, but also shown to help kids with autism/add/adhd. We did not see any improvements with Ben and some bizarre side effects, so we stopped. We are now trying Clonadine- a very small dose. We are trying to find the right balance- something to help take the "edge off", but not make Ben a little zombie! It does make him sleepy (of which a little is good), but we need to find the right balance. We are still doing all the other dozens of supplements. We have also been doing LDN- Low Dose Naltrexone- it is an immune system drug- and I think we have seen some significant improvements from that. All in all, we are still trying to find the right mix of therapies, supplements, and meds. All of which seem to be helping tremendously! I know you will all be so amazed when you see him next. Take care.
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