OT- Autism

[spndnchz]

Hey, it's Autism Awareness Day. I think instead of wearing blue today, I'm just going to bring my daughter to work and let her loose. We'll be off the air in seven minutes and she'll leave that place looking like one of those videos where a deer gets trapped in the convenient store.

 

I hope that was meant to be funny. Because I'm LMAO.

[SwampD]

I hope that was meant to be funny. Because I'm LMAO.

I'm glad I'm not the only one to find it hilarious. I've been laughing about it since I wrote it.

 

It is World Autism Awareness Day. Autism Speaks got them the light the Empire State Building in Blue tonight. That's pretty cool.

 

I've seen what just three months of totally intense intervention has done for my son. While he still has emotional out bursts, he has started to identify the actions that help him calm down. This week, several times when he has exploded into one of his frustration-with-how-the-world-works rages, he has run to his room, grabbed his doggy pillow-pet and squeezed it hard (pressure is a common soothing method for ASD kids, one of Temple Grandin's great gifts to the ASD community). The first time he did it on his own, my wife and I literally just stood there in stunned awe. It's not some magical development, his OT had been working with him on this for weeks. Intervention works.

 

Additionally, while Ollie still can't communicate in what we would recognize as a conversation, on Monday we had a great day. After dinner, I told him we were going swimming. He immediately walked into his room and awaited the installation of his swimsuit. Once we had his coat on, he walked to the back door, walked down the stairs holding my hand (we have a second floor apartment) and got in the car on his own. At the YMCA, he got out, held my hand in the parking lot, and practically ran up the stairs and to the locker room. The whole time he followed my verbal instructions ("Hold the railing", "Hold my hand", "This way", etc.) and I didn't need to carry him once. This is mostly huge because he is pushing 50lbs now, and I am a 6' tall 140 lbs soaking wet. We were not selected to be father/son based on my capacity to carry him around. Again, none of this is a spontaneous development. His Speech Therapist has been working on following verbal instructions for months. Intervention works.

 

Today's designation comes from the UN. Autsim isn't just an American Problem. My wife has begun a business relationship with a woman who runs a global autism charity. MOST of the kids who have ASD on this planet don't have access to the programs that we have here in the US, and especially in the Great State of New York. I can't imagine what would be made of my son, or Swamp's daughter, or any of the other Sabrespacelings with ASD in a region of the world with no real awareness of Autism. I find "Awareness" days often times to be trite and useless. Everyone is aware of cancer. We don't need awareness, we need science. This one is different for me, and not solely because I am immediately affected, I am immediately affect by cancer as well. It's different because the biggest weapon to help these particular kids right now is awareness. Early awareness to help drive interventions like those helping Ollie. Awareness of how these people are helped so kids like Swamp's daughter can get the treatments that work without needing pager numbers and home-made purification labs.

 

So I encourage everyone to read something about Autism today, and more importantly, talk about it with your families, friends, anyone. Help people understand that, while it is still a huge mystery, we have some great tools, we just need to be aware of what they are, and who needs them.

Good stuff. Glad to hear things are moving in the right direction.

[Taro T]

Hey, it's Autism Awareness Day. I think instead of wearing blue today, I'm just going to bring my daughter to work and let her loose. We'll be off the air in seven minutes and she'll leave that place looking like one of those videos where a deer gets trapped in the convenient store.

That's hilarious. :lol: I have a grest mental picture of that little girl from your video gleefully going to town. Thanks for the laugh.

It is World Autism Awareness Day. Autism Speaks got them the light the Empire State Building in Blue tonight. That's pretty cool.

 

I've seen what just three months of totally intense intervention has done for my son. While he still has emotional out bursts, he has started to identify the actions that help him calm down. This week, several times when he has exploded into one of his frustration-with-how-the-world-works rages, he has run to his room, grabbed his doggy pillow-pet and squeezed it hard (pressure is a common soothing method for ASD kids, one of Temple Grandin's great gifts to the ASD community). The first time he did it on his own, my wife and I literally just stood there in stunned awe. It's not some magical development, his OT had been working with him on this for weeks. Intervention works.

 

Additionally, while Ollie still can't communicate in what we would recognize as a conversation, on Monday we had a great day. After dinner, I told him we were going swimming. He immediately walked into his room and awaited the installation of his swimsuit. Once we had his coat on, he walked to the back door, walked down the stairs holding my hand (we have a second floor apartment) and got in the car on his own. At the YMCA, he got out, held my hand in the parking lot, and practically ran up the stairs and to the locker room. The whole time he followed my verbal instructions ("Hold the railing", "Hold my hand", "This way", etc.) and I didn't need to carry him once. This is mostly huge because he is pushing 50lbs now, and I am a 6' tall 140 lbs soaking wet. We were not selected to be father/son based on my capacity to carry him around. Again, none of this is a spontaneous development. His Speech Therapist has been working on following verbal instructions for months. Intervention works.

 

Today's designation comes from the UN. Autsim isn't just an American Problem. My wife has begun a business relationship with a woman who runs a global autism charity. MOST of the kids who have ASD on this planet don't have access to the programs that we have here in the US, and especially in the Great State of New York. I can't imagine what would be made of my son, or Swamp's daughter, or any of the other Sabrespacelings with ASD in a region of the world with no real awareness of Autism. I find "Awareness" days often times to be trite and useless. Everyone is aware of cancer. We don't need awareness, we need science. This one is different for me, and not solely because I am immediately affected, I am immediately affect by cancer as well. It's different because the biggest weapon to help these particular kids right now is awareness. Early awareness to help drive interventions like those helping Ollie. Awareness of how these people are helped so kids like Swamp's daughter can get the treatments that work without needing pager numbers and home-made purification labs.

 

So I encourage everyone to read something about Autism today, and more importantly, talk about it with your families, friends, anyone. Help people understand that, while it is still a huge mystery, we have some great tools, we just need to be aware of what they are, and who needs them.

Been fortunate enough to not have an autistic child of my own but have also been fortunate enough to coach a couple of kids on the spectrum. I truly wish your son and the other children with autism / Aspergers to continue to get the support they need and that treatments and understanding continue to improve. Yours is a difficult job, it appears that you're performing it admirably. Keep it up. Kudos to you, Swamp, wjag, bluegold, Neuvirth, and the rest.

[ROC Sabres]

Sent you a PM Glass. Let me know if I can help.

[biodork]

That's great to hear, GCoE! Especially after the last update regarding difficulties in access to services.

[LastPommerFan]

Have any of you heard about "ABLE Act" (S. 313/H.R.647)?

 

Essentially it creates a tax advantage savings account to help pay for all the care involved with raising a special needs child and transitioning them into adulthood. It's very similar to a Health Saving Account in that the money goes in tax free and as long as it is spent on a qualified expense, it comes out tax free. The cool part is it expands the "qualified expense" list to include things like occupational therapy, assistance devices, and even rent. My wife and I were having a rather odd discussion this morning about what we can do now to help plan for the adult needs of our 2-year-old, and I thought it would be awesome if there was a way to save for any help he might need in the future so it doesn't completely fall on his brothers and their families should he not be able to live independently (I have no idea where Ollie will land on this, he might be able to get a job and integrate into society just fine, or he might not, kids like him can land anywhere).

 

Then I did a quick google search and found this bill. It has 73 co-sponsors in the Senate and 363 in the house. That's over 75% of congress! Oddly, or not so oddly, it's been stuck in committee for 2 years. It seems like such a easy bi-partisan win, and with Autism rates on the rise, it could really help avoid a problem when the current generation of kids being diagnosed has to survive on their own. I can't figure out why it won't move.

 

 

 

Link to the House Bill: http://thomas.loc.gov/cgi-bin/query/z?c113:H.R.647:

Link to the Senate Bill: http://thomas.loc.gov/cgi-bin/query/z?c113:S.313:

 

Thoughts? do any of you other parents of kids with special needs have discussions like the one my wife and I had this morning? What actions are you taking to plan for that (potential) future?

[SwampD]

Have any of you heard about "ABLE Act" (S. 313/H.R.647)?

 

Essentially it creates a tax advantage savings account to help pay for all the care involved with raising a special needs child and transitioning them into adulthood. It's very similar to a Health Saving Account in that the money goes in tax free and as long as it is spent on a qualified expense, it comes out tax free. The cool part is it expands the "qualified expense" list to include things like occupational therapy, assistance devices, and even rent. My wife and I were having a rather odd discussion this morning about what we can do now to help plan for the adult needs of our 2-year-old, and I thought it would be awesome if there was a way to save for any help he might need in the future so it doesn't completely fall on his brothers and their families should he not be able to live independently (I have no idea where Ollie will land on this, he might be able to get a job and integrate into society just fine, or he might not, kids like him can land anywhere).

 

Then I did a quick google search and found this bill. It has 73 co-sponsors in the Senate and 363 in the house. That's over 75% of congress! Oddly, or not so oddly, it's been stuck in committee for 2 years. It seems like such a easy bi-partisan win, and with Autism rates on the rise, it could really help avoid a problem when the current generation of kids being diagnosed has to survive on their own. I can't figure out why it won't move.

 

 

 

Link to the House Bill: http://thomas.loc.go...z?c113:H.R.647:

Link to the Senate Bill: http://thomas.loc.go...y/z?c113:S.313:

 

Thoughts? do any of you other parents of kids with special needs have discussions like the one my wife and I had this morning? What actions are you taking to plan for that (potential) future?

That's pretty interesting. I wonder if my monthly booze tab would be considered a qualified expense. Hey, my daughter's well being is directly tied to my ability to cope.

 

As far as preparing for the future, we have a trust set up for our daughter. If we leave everything directly to her, there are a lot of services she would not be eligible for (Medicare etc). Right now, at our age, our biggest asset is our ability to earn money, If we lose that things would really suck, so we have long term disability insurance as well as life insurance.

[biodork]

I know not everyone likes cats, but this is a great story:

 

http://www.boredpanda.com/thula-therapy-cat-autistic-artist-iris-grace/

 

Remember when we wrote about Iris Grace, the incredibly talented 5-year-old girl with autism who paints beautiful pictures? It turns out that she has a behind-the-scenes helper who’s also worthy of praise – that’s Thula, her therapeutic cat.

[That Aud Smell]

I know not everyone likes cats, but this is a great story:

 

http://www.boredpand...ist-iris-grace/

 

I am as big a non-cat-person as you'll find, and I still loved it.

[Sabres Fan in NS]

I know not everyone likes cats, but this is a great story:

 

http://www.boredpand...ist-iris-grace/

 

You just made my day, week, month ...

 

How could anyone not be moved by that story and those photos.

[biodork]

Interesting stuff here (bolding below is mine):

 

http://www.labmanage...sm#.VEfC4iLF9qM

 

... studies show that the cells of those with ASD often have high levels of oxidative stress, the buildup of harmful, unintended byproducts from the cell’s use of oxygen that can cause inflammation, damage DNA, and lead to cancer and other chronic diseases.

 

In 1992, Talalay’s research group discovered that sulforaphane has some ability to bolster the body’s natural defenses against oxidative stress, inflammation and DNA damage. In addition, the chemical later turned out to improve the body’s heat-shock response — a cascade of events used to protect cells from the stress caused by high temperatures, including those experienced when people have fever.

 

Intriguingly, he says, about one-half of parents report that their children’s autistic behavior improves noticeably when they have a fever, then reverts back when the fever is gone. In 2007, Zimmerman, a principal collaborator in the current study, tested this anecdotal trend clinically and found it to be true, though a mechanism for the fever effect was not identified.

 

Because fevers, like sulforaphane, initiate the body’s heat-shock response, Zimmerman and Talalay wondered if sulforaphane could cause the same temporary improvement in autism that fevers do. The current study was designed to find out.

 

Before the start of the trial, the patients’ caregivers and physicians filled out three standard behavioral assessments: the Aberrant Behavior Checklist (ABC), the Social Responsiveness Scale (SRS) and the Clinical Global Impressions-Improvement scale (CGI-I). The assessments measure sensory sensitivities, ability to relate to others, verbal communication skills, social interactions and other behaviors related to autism.

 

Twenty-six of the subjects were randomly selected to receive, based on their weight, 9 to 27 milligrams of sulforaphane daily, and 14 received placebos. Behavioral assessments were again completed at four, 10 and 18 weeks while treatment continued. A final assessment was completed for most of the participants four weeks after the treatment had stopped.

 

Most of those who responded to sulforaphane showed significant improvements by the first measurement at four weeks and continued to improve during the rest of the treatment. After 18 weeks of treatment, the average ABC and SRS scores of those who received sulforaphane had decreased 34 and 17 percent, respectively, with improvements in bouts of irritability, lethargy, repetitive movements, hyperactivity, awareness, communication, motivation and mannerisms.

 

After 18 weeks of treatment, according to the CGI-I scale, 46, 54 and 42 percent of sulforaphane recipients experienced noticeable improvements in social interaction, aberrant behaviors and verbal communication, respectively.

...

Talalay cautions that the levels of sulforaphane precursors present in different varieties of broccoli are highly variable. Furthermore, the capacity of individuals to convert these precursors to active sulforaphane also varies greatly. It would be very difficult to achieve the levels of sulforaphane used in this study by eating large amounts of broccoli or other cruciferous vegetables.

Edited October 22, 2014 by biodork

[SwampD]

Interesting stuff here (bolding below is mine):

 

http://www.labmanage...sm#.VEfC4iLF9qM

Thanks for this. Might have to give this a try. Mmmm, broccoli caps.

[biodork]

Thanks for this. Might have to give this a try. Mmmm, broccoli caps.

 

lol yeah, I checked and they do sell sulforaphane supplements, but given the... let's just say, undesirable, side effects of cruciferous vegetables, I wondered how many people take them. ;)

Edited October 22, 2014 by biodork

[MattPie]

lol yeah, I checked and they do sell sulforaphane supplements, but given the... let's just say, undesirable, side effects of cruciferous vegetables, I wondered how many people take them. ;)

 

I thought that if you ate enough of them, your body learns to deal with them. For awhile I was eating a salad with broccoli (3oz, by weight) almost every day and didn't notice undesirable effects (well, no more than my usual undesirability :)).

[biodork]

I thought that if you ate enough of them, your body learns to deal with them. For awhile I was eating a salad with broccoli (3oz, by weight) almost every day and didn't notice undesirable effects (well, no more than my usual undesirability :)).

 

I think you're right, but whether or not people tough it out that long depends on how undesirable the effects are, haha. Probably a lot like adding fiber to your diet... if you're eating 5-10 g / day now and eat one of those cereal bars with 9 g in one sitting, chances are the unpleasantness that will likely follow will having you questioning whether or not it's worth it!

Edited October 22, 2014 by biodork

[Sabres Fan in NS]

Often when God has blessed (yes, blessed is the word I wanted to use) us with challenges He often blesses us with great talents that are often unexplainable under the circumstances.

 

Good friends of ours son is 25. He will never (probably)be married and have a traditional job, due to severe autism. He is a mathematical genus though and will probably have a PhD in advanced mathematics soon.

 

I have been diagnosed with a mild form of autism that makes many "normal" things difficult for me to do. I have a "gift" of being able to relate to animals in some kind of special way ... my wife and I care for several stray cats in the neighbourhood (feed and provide shelter) along with several other friends in our neighbourhood. The cats never go near any of us, except for me. I can snuggle with them and am able to give them that little extra loving contact that they need.

 

This lady has severe autism and never left her village in Scotland until she got up all her nerve to go on Britain's Got Talent in 2009, when she was 47. She has been blessed with an outstanding singing voice.

 

 

I am not big on the Royals and all that jazz, but I love the pipes.

 

The point is that there is always something special from God. It just, often, takes time for it to manifest itself.

 

Please keep the faith.

[Johnny DangerFace]

However, sometimes the most simple things can bring them such joy it's remarkable.

 

I remember working with a severely autistic child who loved Disney movies. He had a stand of about 100 movies. If I were to switch the order of two movie, he would notice instantly and get stressed. It was amazing how he knew!

 

But yea, there were a few disney lines I could say to him that would crack him up without fail.

Edited November 9, 2014 by Numark

[wjag]

Interesting stuff here (bolding below is mine):

 

http://www.labmanage...sm#.VEfC4iLF9qM

 

paint me skeptical.

[Sabres Fan in NS]

However, sometimes the most simple things can bring them such joy it's remarkable.

 

I remember working with a severely autistic child who loved Disney movies. He had a stand of about 100 movies. If I were to switch the order of two movie, he would notice instantly and get stressed. It was amazing how he knew!

 

But yea, there were a few disney lines I could say to him that would crack him up without fail.

 

This is absolutely true, as well. Thanks.

[SwampD]

Often when God has blessed (yes, blessed is the word I wanted to use) us with challenges He often blesses us with great talents that are often unexplainable under the circumstances.

 

Good friends of ours son is 25. He will never (probably)be married and have a traditional job, due to severe autism. He is a mathematical genus though and will probably have a PhD in advanced mathematics soon.

 

I have been diagnosed with a mild form of autism that makes many "normal" things difficult for me to do. I have a "gift" of being able to relate to animals in some kind of special way ... my wife and I care for several stray cats in the neighbourhood (feed and provide shelter) along with several other friends in our neighbourhood. The cats never go near any of us, except for me. I can snuggle with them and am able to give them that little extra loving contact that they need.

 

This lady has severe autism and never left her village in Scotland until she got up all her nerve to go on Britain's Got Talent in 2009, when she was 47. She has been blessed with an outstanding singing voice.

 

http://www.youtube.com/watch?v=Eu-xCh7Fzlw

 

I am not big on the Royals and all that jazz, but I love the pipes.

 

The point is that there is always something special from God. It just, often, takes time for it to manifest itself.

 

Please keep the faith.

I want to preface this by saying that I just don't do schmaltz. If you are familiar with Autism, then you are familiar with "Welcome to Holland". I fecking HATE "Welcome to Holland"! If I hear that damn poem/essay one more fecking time I'm going ABA Temple Grandin with a cattle prod.

 

I had a completely snarky response to your post all ready to go, something like, "not only did God bless us with the challenge of wondering if this was the day that our daughter wasn't going to wake up, he also gave her the amazing talent of pulling off her diaper after dropping a deuce, then stepping in it and tracking it all over her room."

 

With that said, I don't know why but I took some comfort in your post and it made today a little easier. Thanks.

 

Just don't ever wish me a Happy Friday. :D

[Sabres Fan in NS]

I want to preface this by saying that I just don't do schmaltz. If you are familiar with Autism, then you are familiar with "Welcome to Holland". I fecking HATE "Welcome to Holland"! If I hear that damn poem/essay one more fecking time I'm going ABA Temple Grandin with a cattle prod.

 

I had a completely snarky response to your post all ready to go, something like, "not only did God bless us with the challenge of wondering if this was the day that our daughter wasn't going to wake up, he also gave her the amazing talent of pulling off her diaper after dropping a deuce, then stepping in it and tracking it all over her room."

 

With that said, I don't know why but I took some comfort in your post and it made today a little easier. Thanks.

 

Just don't ever wish me a Happy Friday. :D

 

SwampD,

 

When I was working on my post I did have you in mind, as I know you and your wife are facing great challenges with your daughter.

 

My intent was to encourage and not discourage.

 

I appreciate your initial reaction, but am also glad that you had a more positive reaction to the post.

 

For what it's worth, please remember that a guy in a small city on the East coast of Canada is keeping you, your wife and your daughter in his thoughts and prayers.

[SwampD]

SwampD,

 

When I was working on my post I did have you in mind, as I know you and your wife are facing great challenges with your daughter.

 

My intent was to encourage and not discourage.

 

I appreciate your initial reaction, but am also glad that you had a more positive reaction to the post.

 

For what it's worth, please remember that a guy in a small city on the East coast of Canada is keeping you, your wife and your daughter in his thoughts and prayers.

:thumbsup:

[LastPommerFan]

Have any of you heard about "ABLE Act" (S. 313/H.R.647)?

 

Essentially it creates a tax advantage savings account to help pay for all the care involved with raising a special needs child and transitioning them into adulthood. It's very similar to a Health Saving Account in that the money goes in tax free and as long as it is spent on a qualified expense, it comes out tax free. The cool part is it expands the "qualified expense" list to include things like occupational therapy, assistance devices, and even rent. My wife and I were having a rather odd discussion this morning about what we can do now to help plan for the adult needs of our 2-year-old, and I thought it would be awesome if there was a way to save for any help he might need in the future so it doesn't completely fall on his brothers and their families should he not be able to live independently (I have no idea where Ollie will land on this, he might be able to get a job and integrate into society just fine, or he might not, kids like him can land anywhere).

 

Then I did a quick google search and found this bill. It has 73 co-sponsors in the Senate and 363 in the house. That's over 75% of congress! Oddly, or not so oddly, it's been stuck in committee for 2 years. It seems like such a easy bi-partisan win, and with Autism rates on the rise, it could really help avoid a problem when the current generation of kids being diagnosed has to survive on their own. I can't figure out why it won't move.

 

Link to the House Bill: http://thomas.loc.go...z?c113:H.R.647:

Link to the Senate Bill: http://thomas.loc.go...y/z?c113:S.313:

 

Thoughts? do any of you other parents of kids with special needs have discussions like the one my wife and I had this morning? What actions are you taking to plan for that (potential) future?

 

So it looks like the congress is going to vote on this bill today...

[Weave]

So it looks like the congress is going to vote on this bill today...

 

Good luck.

[wjag]

So it looks like the congress is going to vote on this bill today...

 

I wouldn't hold your breath.

 

Govtrack.us has it at 62% chance of passing.

 

 

And here is the toxic pill in the language: "Those receiving Supplemental Security Income (SSI) from Social Security shall have those payments suspended while maintaining excess resources in an ABLE account."

 

So you save at the peril of your SSI.

Edited December 3, 2014 by wjag