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#1 Whiskey Bottle of Emotion

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Posted 03 January 2014 - 12:11 PM

My middle child, Ollie, has recently been assessed as Autistic. We haven't been up to Strong for the official full medical diagnosis, apparently this takes months, but we've recently been approved by the County for 4 extended sessions of in-home therapy per week. Ollie is 2 years, 4 months, and was identified by the Early Intervention folks as having severe cognitive and communication delays, and moderate physical delays. I know some of you here in Sabre Space have special needs kids of your own, so I'm throwing this out there asking for any advice. Either with Autism, or dealing with the various programs designed to help kids with special needs.

Ollie is an awesome kid. I just want as much information as I can get, so I can help him out as much as possible. I'm scared, as any parent would be, I think, but I'm also excited to be able to help him adapt to a world designed for people who interact with it a little differently than he does.

Thanks.

#2 We've

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Posted 03 January 2014 - 12:15 PM

You've alluded to this in the past. Good luck. sincerely. I got nuthin for experiences, other than that Chinese exchange student that I really think was in the spectrum.

A former co-worker had a very autistic child. He was attending a school for the deaf. Apparently signing (or maybe it was the teaching techniques) was an effective communication means for some autistic children. My co-worker indicated improvement but they weren't able to stay with the program for various non-student realted reasons.

#3 wjag

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Posted 03 January 2014 - 12:31 PM

Well from my personal experience, I would say that early intervention is the key. My son is now 16. He is on the spectrum. No one can agree what to call it, but he is high functioning. We have aggressively worked to bring him along. Relatives who don't see him regularly tell us they can see the changes. He is in 9th grade and on diploma track. It is a daily struggle to get him to matriculate with others and maintain grades. It is the hardest thing I have done and have to do in my life. He is the number 1 item on my bucket list: to see him graduate with a diploma. He is my hero.


We don't medicate our son. That stuff and its affects are scary. I would rather put up with the quirky behavior than have him under the affects of medication. The decision to medicate or not is a very difficult one and will depend on many factors including his behaviors and mannerisms.

All the best.. It is a life long journey now.

Feel free to PM me about specific questions. We have a world of experience with hospitals, doctors, testing, quacks, diets, medication, practices, teachers, adminstrators, lawyers, trusts, IEPs, and friends/family/siblings. All will have an impact in your future.

Edited by wjag, 03 January 2014 - 04:04 PM.


#4 nfreeman

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Posted 03 January 2014 - 12:55 PM

God bless you and your family, GCOE.

It will be alright.

#5 cdexchange

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Posted 03 January 2014 - 12:55 PM

No experience here, no kids at all...but just wanted to wish you the best. I only know you from your posts, but based on those it's obvious to me that you will do the very best for him.

#6 Johnny DangerFace

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Posted 03 January 2014 - 01:05 PM

I'm at work now on my phone, but I use to work as an ABA therapist for autistic children and have a lot of experience before switching career paths. Early behavioral therapy is crucial and can/will make a world of difference.

I can say that while it's scary, it's something you can face with a positive attitude. Some of the best and happiest children iv encountered in my life were severely autistic.


I also recommend you and your family learning the fundamentals of ABA therapy. It's something I can't recommend enough

#7 FolignosJock

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Posted 03 January 2014 - 01:07 PM

I dont have personal experience but a friends mother is one of the leading writers about Autism. Specifically Aspergers.

http://en.wikipedia....iki/Rudy_Simone


If that is a possibility I am sure I could get you into contact with her. She is a really great lady.

#8 Corp000085

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Posted 03 January 2014 - 01:12 PM

My middle child, Ollie, has recently been assessed as Autistic. We haven't been up to Strong for the official full medical diagnosis, apparently this takes months, but we've recently been approved by the County for 4 extended sessions of in-home therapy per week. Ollie is 2 years, 4 months, and was identified by the Early Intervention folks as having severe cognitive and communication delays, and moderate physical delays. I know some of you here in Sabre Space have special needs kids of your own, so I'm throwing this out there asking for any advice. Either with Autism, or dealing with the various programs designed to help kids with special needs.

Ollie is an awesome kid. I just want as much information as I can get, so I can help him out as much as possible. I'm scared, as any parent would be, I think, but I'm also excited to be able to help him adapt to a world designed for people who interact with it a little differently than he does.

Thanks.


I am a special education case manager for my school system's preschool department. Based on your child's age and the fact that you mentioned "Early Intervention", it sounds like your child is in the Part C Infant/Toddler Program. Things will begin to move quickly between now and when your kid turns 3, but long story short, your local school system will work with your Part C providers and "transition" her from the Part C program to the Part B program (that's public school special education). I'm at work right now, but I'll try to send you a PM later with much more details. I have plenty of experience as a classroom teacher for children with ASD as well. If you do not hear from me by tonight, send me a PM and that'll trigger my memory!

#9 Johnny DangerFace

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Posted 03 January 2014 - 01:12 PM

Also, what state do you live in and are there any universities nearby?

#10 SwampD

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Posted 03 January 2014 - 03:27 PM

GCOE, I don't know where your son falls on the spectrum, but if my daughter isn't at the bottom of it, she is darn close. She is 9 and started to be diagnosed very early (before age one). Early intervention was great and she actually took her first steps during one of her sessions (her PT got all choked up and said she thought it would be years before she would walk). She is non verbal, well, non everything, really, and even though we get after school services 5 days a week for 2 hours, my wife and I are still basically her full time care givers.

Just remember that you are your son's best advocate. There is a lot of help out there. Sometimes I am amazed at how much. Take all you can get and fill out the paperwork for things you are not even sure you need. You never know what you'll get (somehow, my wife found us a free $11k to remodel our bathroom to make it easier for us to bath and change her).

The main thing, though, especially at this early stage, don't forget to love him for who he is and not dwell on what he isn't. Having to go to all the Drs and therapists and reciting his history and missed milestones over and over will be a real drag. It got to the point where I didn't want to find out what was wrong with her anymore (not that anyone knows anyway) because it made me feel like chit. I just wanted to go home and enjoy my daughter.

Feel free to PM and good luck.

And just remember…
http://forums.sabres...400#entry527911

#11 PASabreFan

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Posted 03 January 2014 - 06:43 PM

I've got nothing to add except a virtual pat on the back for GCOE. What a good dad. Good luck with everything.

#12 biodork

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Posted 03 January 2014 - 07:27 PM

This might sound odd, but have you heard anything about pediatric massage therapy? My massage therapist has an autistic son (he's 4 or 5), and she received specific training as a CPMT from this organization:

http://www.liddlekid...e-training.html

http://www.massageto...le.php?id=14431

Obviously she's too far for you, but maybe it's worth seeing if there is someone in your area who's certified in this as well?

Best of luck to you and your family, GCOE. And good on all the others here who've offered their time and assistance; this community really is like none other.

#13 inkman

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Posted 03 January 2014 - 07:49 PM

You've alluded to this in the past. Good luck. sincerely. I got nuthin for experiences, other than that Chinese exchange student that I really think was in the spectrum.

Crazy story man

#14 tom webster

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Posted 03 January 2014 - 08:01 PM

My middle child, Ollie, has recently been assessed as Autistic. We haven't been up to Strong for the official full medical diagnosis, apparently this takes months, but we've recently been approved by the County for 4 extended sessions of in-home therapy per week. Ollie is 2 years, 4 months, and was identified by the Early Intervention folks as having severe cognitive and communication delays, and moderate physical delays. I know some of you here in Sabre Space have special needs kids of your own, so I'm throwing this out there asking for any advice. Either with Autism, or dealing with the various programs designed to help kids with special needs.

Ollie is an awesome kid. I just want as much information as I can get, so I can help him out as much as possible. I'm scared, as any parent would be, I think, but I'm also excited to be able to help him adapt to a world designed for people who interact with it a little differently than he does.

Thanks.



Good luck to you. We have a friend with an autistic child who has become heavily involved in local support groups and in fighting with the school system to get her son what he needs. She has been as devoted to her son and the cause as anyone I know. I would be happy to put you in touch if you think it would be beneficial.

#15 TrueBlueGED

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Posted 03 January 2014 - 11:01 PM

Wish I had some advice for you, but I don't. You and your family do get my best wishes though.

#16 d4rksabre

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Posted 03 January 2014 - 11:49 PM

I gotta say, threads like this are why I love this forum. Look at the people and their experiences that we have to offer. It's awesome.

#17 Ghost of Dwight Drane

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Posted 04 January 2014 - 01:06 AM

GCOE, I don't know where your son falls on the spectrum, but if my daughter isn't at the bottom of it, she is darn close. She is 9 and started to be diagnosed very early (before age one). Early intervention was great and she actually took her first steps during one of her sessions (her PT got all choked up and said she thought it would be years before she would walk). She is non verbal, well, non everything, really, and even though we get after school services 5 days a week for 2 hours, my wife and I are still basically her full time care givers.

Just remember that you are your son's best advocate. There is a lot of help out there. Sometimes I am amazed at how much. Take all you can get and fill out the paperwork for things you are not even sure you need. You never know what you'll get (somehow, my wife found us a free $11k to remodel our bathroom to make it easier for us to bath and change her).

The main thing, though, especially at this early stage, don't forget to love him for who he is and not dwell on what he isn't. Having to go to all the Drs and therapists and reciting his history and missed milestones over and over will be a real drag. It got to the point where I didn't want to find out what was wrong with her anymore (not that anyone knows anyway) because it made me feel like chit. I just wanted to go home and enjoy my daughter.

Feel free to PM and good luck.

And just remember…
http://forums.sabres...400#entry527911


Your video is probably my favorite post ever. Pure, unadulterated joy.....

And I don't care what anyone says....at the end, she is telling you like any other alpha female..."Get off your ass, numbnuts, and let's do it again!"

Weep not for the compliment of being immersed in challenge that leads to growth, but for those so complacent as to never know what matters....

#18 Doohickie

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Posted 04 January 2014 - 03:04 AM

Our younger son "failed out" of nursery school. At the time he was about the same age as your son. If you ever saw the scene in Mr. Holland's Opus where they find out their son is deaf because he was throwing tantrums cuz he couldn't communicate? My son was like that a lot. He was diagnosed with "autistic spectrum disorder"- not full-blown autistic, but in that direction.

My wife strongly advocated for him to get the help he needed, but the other side is she also made sure they put him in the highest functioning environment possible. She wanted to make sure he didn't get "warehoused" in a classroom where he wouldn't be given what he needed to improve to his potential.

So from almost three, he went to a full-time early intervention setup with speech therapy, occupational therapy, all that. From that he transitioned to where he was in the same school with our older son, but was full-time special ed. Then, to part-time special ed. By the time he got to middle school, he was able to function without special help. By high school he took some AP classes and he actually graduated college this past month.

We really had to fight at times to get him the right treatments, therapies, placements, etc. The school districts want to just put the kids where they don't cause trouble; you have to convince/motivate/work with/push them to get what's best for your kid because they're not nearly as interested in outcomes as you are.

One thing that my son got when he was about 5 or 6 was a program called Fast Forward. As I recall, it was a computer program that helped him learn how to catch up with the aspects of speech he didn't learn the first time around. It monitored his progress each day, and the following day's lesson was tailored to the results from the previous day. If you can get the school district to pay for it (or if you have the means), look into Fast Forward. It made a big difference for our son.

#19 Whiskey Bottle of Emotion

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Posted 04 January 2014 - 02:09 PM

Thank you muchly everyone. I will have some individual responses for some if you, but I wanted to thank everyone for their input and/or encouragement. This place is awesome.

#20 blugold43

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Posted 04 January 2014 - 03:15 PM

oh...where to begin. on 3/25/12, my son was labelled with "moderate" autism at 4yrs, 4 months. we were devastated of course...he had been on a downward spiral developmentally for 3+ yrs but every concern expressed to our pediatrician was answered with, "he's fine...really, he's fine." he was definitely normal until age 1, but at that point his language and social growth slowed. and by 3 1/2, he was barely functioning in preschool.

he also had terrible dietary issues, including constipation, and stopped gaining weight. all he wanted was milk, which in itself is a huge red flag for the ASD spectrum, but i had no idea.

long story short, we found a D.A.N. dr., who helped us sort out the nutritional problems and the results have been miraculous. if you want to p.m. me I will send you my cell number and i will tell you everything we did and why, and what the results have been. we really have seen terrific results.

thank god you've gotten a diagnosis as early as you have- i am so angry at myself that we didn't choose another path when our pediatrician was not responsive to our concerns. my son's atec score has gone from 40s to 20s in less than 2 years. but then, where might he be now if we had trusted our instincts and gone elsewhere for help? we'll never know, but i think about it all the time and i still feel terribly guilty about it.

the one piece of advice i will give you and everyone reading is to place MAXIMUM emphasis on addressing nutritional concerns. that, more than any therapy he's received, has allowed my son to start the physical/cognitive/social "catch up" process. if tou have a child on the spectrum, seriosuly consider getting every speck of gluten, dairy and soy out of their diet asap. there are valid medical reasons for this and i can't tell you how much it has helped my son.

Edited by blugold43, 04 January 2014 - 03:18 PM.


#21 SwampD

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Posted 05 January 2014 - 10:31 AM

Your video is probably my favorite post ever. Pure, unadulterated joy.....

And I don't care what anyone says....at the end, she is telling you like any other alpha female..."Get off your ass, numbnuts, and let's do it again!"

Weep not for the compliment of being immersed in challenge that leads to growth, but for those so complacent as to never know what matters....

This has been making me laugh and probably explains more of her behavior than being autistic. In fact, I've been thinking of printing up shirts that say "I'm not Autistic, I'm just an Assh#le!" Maybe with a puzzle piece in the shape of giving the finger.

If this offends anyone, get over it. There will be lots of stuff that is going to offend you in the future that you are just going to have to find the humor in to survive.

Edited by SwampD, 05 January 2014 - 10:32 AM.


#22 SwampD

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Posted 02 April 2014 - 09:36 AM

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.

#23 d4rksabre

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Posted 02 April 2014 - 09:36 AM

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.


:worthy:

#24 Whiskey Bottle of Emotion

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Posted 02 April 2014 - 10:27 AM

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.


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.

#25 LTS

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Posted 02 April 2014 - 10:29 AM

Knowing friends who have an autistic child and others who have gone through significant stressful situations and have seen it tear their family apart...please stay strong for your child and for your family.

As I've already seen from some of the comments in this thread.. the lengths that people will go to in support of their child will help redefine them as a person. Lean on that, and be strong in that, and go forward. All the best... it seems as though you've got a great support group starting right here.

It's a thread like this that helps me get past some of the more bizarre comments and situations that pop up on here from time to time.

#26 spndnchz

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Posted 02 April 2014 - 10:58 AM

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.

#27 SwampD

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Posted 02 April 2014 - 11:13 AM

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.

#28 Taro T

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Posted 02 April 2014 - 06:55 PM

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.

#29 ROC Sabres

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Posted 02 April 2014 - 07:34 PM

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

#30 biodork

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Posted 02 April 2014 - 09:05 PM

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

#31 Whiskey Bottle of Emotion

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Posted 19 June 2014 - 11:52 AM

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?

#32 SwampD

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Posted 19 June 2014 - 12:41 PM

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.

#33 biodork

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Posted 05 October 2014 - 06:37 PM

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

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



#34 That Aud Smell

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Posted 06 October 2014 - 08:43 AM

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.

#35 Sabres Fan In NS

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Posted 08 October 2014 - 02:28 PM

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.

#36 biodork

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Posted 22 October 2014 - 09:51 AM

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 by biodork, 22 October 2014 - 09:51 AM.


#37 SwampD

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Posted 22 October 2014 - 11:52 AM

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.

#38 biodork

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Posted 22 October 2014 - 12:00 PM

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 by biodork, 22 October 2014 - 12:01 PM.


#39 MattPie

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Posted 22 October 2014 - 12:03 PM

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 :)).

#40 biodork

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Posted 22 October 2014 - 12:08 PM

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 by biodork, 22 October 2014 - 12:09 PM.