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#41 Sabres Fan In NS

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Posted 09 November 2014 - 10:29 AM

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.

#42 Johnny DangerFace

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Posted 09 November 2014 - 11:09 AM

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 by Numark, 09 November 2014 - 11:09 AM.


#43 wjag

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Posted 09 November 2014 - 11:36 AM

Interesting stuff here (bolding below is mine):

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


paint me skeptical.

#44 Sabres Fan In NS

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Posted 09 November 2014 - 11:40 AM

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.

#45 SwampD

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Posted 09 November 2014 - 11:10 PM

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

#46 Sabres Fan In NS

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Posted 11 November 2014 - 08:29 AM

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.

#47 SwampD

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Posted 11 November 2014 - 08:37 AM

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:

#48 Whiskey Bottle of Emotion

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Posted 03 December 2014 - 12:31 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?


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

#49 We've

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Posted 03 December 2014 - 12:38 PM

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


Good luck.

#50 wjag

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Posted 03 December 2014 - 12:58 PM

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 by wjag, 03 December 2014 - 01:04 PM.


#51 Whiskey Bottle of Emotion

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Posted 03 December 2014 - 02:10 PM

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.


After a compromise reached earlier this month last month, they only cut the SSI (and it's SSI disability, not traditional Social Security) for accounts above $100k and exempted the accounts for Medicaid means testing with no cap. This might actually work. Debate in the house just finished up. Vote coming soon. Identical senate bill has also cleared committee.

Edited by Glass Case Of Emotion, 03 December 2014 - 02:13 PM.


#52 Whiskey Bottle of Emotion

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Posted 04 December 2014 - 01:33 PM

Passed the house 404-17 :D on to the Senate today.

Also yesterday, The Kirch Center at Galisano Children's Hospital finally scheduled us in for an appointment, after 7 MONTHS of paperwork wrangling.

It was a good day.

#53 Sabres Fan In NS

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Posted 04 December 2014 - 01:36 PM

Passed the house 404-17 :D on to the Senate today.

Also yesterday, The Kirch Center at Galisano Children's Hospital finally scheduled us in for an appointment, after 7 MONTHS of paperwork wrangling.

It was a good day.


This is the best news I have heard in some time.

#54 wjag

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Posted 04 December 2014 - 04:55 PM

After a compromise reached earlier this month last month, they only cut the SSI (and it's SSI disability, not traditional Social Security) for accounts above $100k and exempted the accounts for Medicaid means testing with no cap. This might actually work. Debate in the house just finished up. Vote coming soon. Identical senate bill has also cleared committee.


100k is a drop in the bucket when you are talking long term care. I guess you can always shelter in a special needs trust too. Except those will cost you 5-7k to set up.

I'll reserve any judgement until I can read the full text.

Edited by wjag, 04 December 2014 - 04:55 PM.


#55 Whiskey Bottle of Emotion

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Posted 23 December 2014 - 03:14 PM

House - Check
Senate - Check
President - Check

The Bill is now Law.

#56 d4rksabre

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Posted 23 December 2014 - 03:17 PM

House - Check
Senate - Check
President - Check

The Bill is now Law.


:beer:

#57 wjag

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Posted 14 November 2016 - 02:59 PM

Anyone have any direct experience, good, bad, indifferent, to opening an ABLE account?  Need to do one this week and there just isn't a lot of objective advice out there on this...



#58 SwampD

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Posted 14 November 2016 - 05:03 PM

Anyone have any direct experience, good, bad, indifferent, to opening an ABLE account?  Need to do one this week and there just isn't a lot of objective advice out there on this...

Thanks for bringing this up again. I've been meaning to look into this more.

 

We set up a Special Needs Trust pretty early on, and all the sites I've been looking at are all about ABLE accounts vs SNTs. I've been wondering if they both might be useful for different things. Can't really find anything, though.



#59 wjag

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Posted 15 November 2016 - 09:39 AM

Thanks for bringing this up again. I've been meaning to look into this more.

 

We set up a Special Needs Trust pretty early on, and all the sites I've been looking at are all about ABLE accounts vs SNTs. I've been wondering if they both might be useful for different things. Can't really find anything, though.

 

We have a SNT also.  We are a few years ahead of you in this, age wise of our children.  My son, now 18, looks like he will get approved for SSDI.  A small miracle as we did this on our own, without legal assistance (although we did have legal assistance for the SNT).  The ABLE account allows you to save up to 100K for their needs.  And unlike a SNT, the money is theirs.  If you leave money in a SNT, upon their death it reverts to the state.  So we can take his SSDI, charge him room and board, and then dump that money in the ABLE account.  The downside for us is that the SSDI is taxable to him (us) and the room and board is taxable on us.  So in effect, we pay tax twice on that money, which ends up in his ABLE account. 

 

The big reason for doing the ABLE account is that it does not get needs tested when qualifying for SSDI, medicare, etc.  The system is crazy.  If we don't charge him room and board, then his potential 733/mo gets reduced by 233 dollars.   If we do charge him room and board, he may get the full 733 but we get double tapped on the taxes.  Money in the ABLE account also accrues interest tax free.

 

Anyone feel free to correct this..  I am still learning/navigating through this gauntlet. 


Edited by wjag, 15 November 2016 - 09:40 AM.


#60 SwampD

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Posted 15 November 2016 - 09:52 AM

We have a SNT also.  We are a few years ahead of you in this, age wise of our children.  My son, now 18, looks like he will get approved for SSDI.  A small miracle as we did this on our own, without legal assistance (although we did have legal assistance for the SNT).  The ABLE account allows you to save up to 100K for their needs.  And unlike a SNT, the money is theirs.  If you leave money in a SNT, upon their death it reverts to the state.  So we can take his SSDI, charge him room and board, and then dump that money in the ABLE account.  The downside for us is that the SSDI is taxable to him (us) and the room and board is taxable on us.  So in effect, we pay tax twice on that money, which ends up in his ABLE account. 

 

The big reason for doing the ABLE account is that it does not get needs tested when qualifying for SSDI, medicare, etc.  The system is crazy.  If we don't charge him room and board, then his potential 733/mo gets reduced by 233 dollars.   If we do charge him room and board, he may get the full 733 but we get double tapped on the taxes.  Money in the ABLE account also accrues interest tax free.

 

Anyone feel free to correct this..  I am still learning/navigating through this gauntlet. 

I don't believe this is accurate. In fact, I think the state gets reimbursed upon death from an ABLE account first, and then goes to probate. It can be a long and expensive prossess before heirs get money. That doesn't happen with a SNT.



#61 wjag

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Posted 15 November 2016 - 09:56 AM

I don't believe this is accurate. In fact, I think the state gets reimbursed upon death from an ABLE account first, and then goes to probate. It can be a long and expensive prossess before heirs get money. That doesn't happen with a SNT.

 

 

I think I am right.

 

from:

 

http://www.naylaw.co...ortland-oregon/

 

"When a beneficiary passes away, the Trust document will set forth what happens next.  The person(s) or charitable organization(s) named to receive the remaining funds in the Trust are referred to as the “remainder beneficiaries.”  In the case of a Special Needs Trust, the state that provided the beneficiary with benefits must be paid first. The Trustee (the person managing the Trust) should review the Trust document carefully and confer with a lawyer to assist in performing the duties prescribed in the Trust and under state law.  In Oregon, the Trustee has a duty to notify the remainder beneficiaries of the existence of the Trust, provide a copy of the Trust to them and account for all Trust assets.  Generally, the Trust will instruct the Trustee to first pay the last expenses of the beneficiary and of the Trust administration (such as taxes, tax preparation fees, attorney fees).  Sometimes the Trust document will instruct the Trustee to wait for a certain period of time before distributing the Trust assets to the remainder beneficiary(ies).  After the bills are paid and the waiting period has lapsed, the Trustee must distribute the assets in an expedient manner."



#62 spndnchz

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Posted 15 November 2016 - 10:56 AM

I think I am right.

 

from:

 

http://www.naylaw.co...ortland-oregon/

 

"When a beneficiary passes away, the Trust document will set forth what happens next.  The person(s) or charitable organization(s) named to receive the remaining funds in the Trust are referred to as the “remainder beneficiaries.”  In the case of a Special Needs Trust, the state that provided the beneficiary with benefits must be paid first. The Trustee (the person managing the Trust) should review the Trust document carefully and confer with a lawyer to assist in performing the duties prescribed in the Trust and under state law.  In Oregon, the Trustee has a duty to notify the remainder beneficiaries of the existence of the Trust, provide a copy of the Trust to them and account for all Trust assets.  Generally, the Trust will instruct the Trustee to first pay the last expenses of the beneficiary and of the Trust administration (such as taxes, tax preparation fees, attorney fees).  Sometimes the Trust document will instruct the Trustee to wait for a certain period of time before distributing the Trust assets to the remainder beneficiary(ies).  After the bills are paid and the waiting period has lapsed, the Trustee must distribute the assets in an expedient manner."

 

Depends where the asset that is in the trust came from.



#63 SwampD

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Posted 15 November 2016 - 11:21 AM

I think I am right.

 

from:

 

http://www.naylaw.co...ortland-oregon/

 

"When a beneficiary passes away, the Trust document will set forth what happens next.  The person(s) or charitable organization(s) named to receive the remaining funds in the Trust are referred to as the “remainder beneficiaries.”  In the case of a Special Needs Trust, the state that provided the beneficiary with benefits must be paid first. The Trustee (the person managing the Trust) should review the Trust document carefully and confer with a lawyer to assist in performing the duties prescribed in the Trust and under state law.  In Oregon, the Trustee has a duty to notify the remainder beneficiaries of the existence of the Trust, provide a copy of the Trust to them and account for all Trust assets.  Generally, the Trust will instruct the Trustee to first pay the last expenses of the beneficiary and of the Trust administration (such as taxes, tax preparation fees, attorney fees).  Sometimes the Trust document will instruct the Trustee to wait for a certain period of time before distributing the Trust assets to the remainder beneficiary(ies).  After the bills are paid and the waiting period has lapsed, the Trustee must distribute the assets in an expedient manner."

Yes. that is correct, but that is in the case of outstanding debts. As is the case with any trust.

 

I'm pretty sure, though, that with an ABLE account, whatever is left in the account upon death actually has to go towards paying back the state for benefits handed out, not just outstanding debts.

 

EDIT: Actually you are right, but it depends on what kind of trust you get. We set ours up not as a Medicaid Payback Trust so I never really thought about it. Our lawyer was really good. Talk about being ahead of the game, his brother is special needs and in his 40s.


You've obviously looked into this more than I have. Do you see a benefit in having both?


Edited by SwampD, 15 November 2016 - 11:17 AM.


#64 wjag

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Posted 15 November 2016 - 11:25 AM

Depends where the asset that is in the trust came from.

 

 

Could you be more specific?

 

I was pretty sure when our lawyer set this up, she told us that since my son gets state medical insurance, that they expect to sweep up any assets left in this account, so don't leave any appreciable balance in there.

 

This money comes from family donations and insurance. 



#65 spndnchz

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Posted 15 November 2016 - 11:51 AM

Could you be more specific?

 

I was pretty sure when our lawyer set this up, she told us that since my son gets state medical insurance, that they expect to sweep up any assets left in this account, so don't leave any appreciable balance in there.

 

This money comes from family donations and insurance. 

 

I'm not familiar with your State if they implement OBRA '93 or not. I'd re-ask your lawyer.



#66 SwampD

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Posted 15 November 2016 - 11:53 AM

I'm not familiar with your State if they implement OBRA '93 or not. I'd re-ask your lawyer.

Yeah. I'm thinking we're going to have a meeting with ours soon.



#67 North Buffalo

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Posted 16 November 2016 - 12:22 AM

Thanks for all the info... my now 10 year old will qualify at some point,  we need a lawyer to help us and I have a name... been dragging my feet thinking I should wait until he is 18, but starting to save for him and my Dad is putting a small Trust together for him.  He has a rare neurological disorder and will need help the rest of his life.    This thread gives me some things to start working on now... Thanks.



#68 SwampD

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Posted 10 June 2017 - 10:33 PM

Not sure if anyone cares or will even find this interesting, but I kinda want to put this out there, anyway.

 

My wife and I went to a new dispensary today. It was 2 hours away and totally worth the trip. It was so nice to feel like we were actually getting medicine from a medical facility. Our old dispensary kinda felt like we were just getting pot from a bunch of stealth hippies who felt like they were pulling something over on the gub'ment.

 

In the past few weeks, I have watched my daughter hit herself in the head more than 1000 a day (I counted). It got so bad that we had to buy her 2 helmets, one for school and one for home, so she wouldn't concuss herself (something she did in February). While Autism is not yet on the list of conditions that Drs can prescribe MMJ for in NJ, we are "lucky" enough to get it for my daughter for her seizures. If we happen to get some off label benefits from it, well then fantastic.

 

In the past, I have had to spend days in Walter White conditions, basically trying to turn bags of weed into medicine, not knowing the potency or efficacy of what I had made. Today, on the way home, We gave her a single dose of pre-made, tested oil,… medicine.

 

She hit her head four times the rest of the day. Four.

 

We have hope again. It's a good day.



#69 ShadowLiger

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Posted 10 June 2017 - 10:43 PM

I'm happy the medicine helps. Sucks you gotta drive 2 hours. You're some good people.

#70 inkman

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Posted 10 June 2017 - 10:44 PM

Not sure if anyone cares or will even find this interesting, but I kinda want to put this out there, anyway.

My wife and I went to a new dispensary today. It was 2 hours away and totally worth the trip. It was so nice to feel like we were actually getting medicine from a medical facility. Our old dispensary kinda felt like we were just getting pot from a bunch of stealth hippies who felt like they were pulling something over on the gub'ment.

In the past few weeks, I have watched my daughter hit herself in the head more than 1000 a day (I counted). It got so bad that we had to buy her 2 helmets, one for school and one for home, so she wouldn't concuss herself (something she did in February). While Autism is not yet on the list of conditions that Drs can prescribe MMJ for in NJ, we are "lucky" enough to get it for my daughter for her seizures. If we happen to get some off label benefits from it, well then fantastic.

In the past, I have had to spend days in Walter White conditions, basically trying to turn bags of weed into medicine, not knowing the potency or efficacy of what I had made. Today, on the way home, We gave her a single dose of pre-made, tested oil,… medicine.

She hit her head four times the rest of the day. Four.

We have hope again. It's a good day.

Awesome

#71 Doohickie

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Posted 11 June 2017 - 01:53 AM

Not sure if anyone cares or will even find this interesting, but I kinda want to put this out there, anyway.

 

Come on, are you kidding?  Great story, great news for your daughter.



#72 dudacek

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Posted 11 June 2017 - 10:28 AM

It's posts like Swamp's that make me wish we had a like button

#73 Eleven

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Posted 11 June 2017 - 10:56 AM

Great news, swamp



#74 SwampD

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Posted 11 June 2017 - 01:53 PM

Thanks, all. And Doohickie, it seems like all my wife and I do is talk about our daughter, I just figured everyone else is as bored with the topic as I am. :lol:

 

Day two and we really can't believe the results. We hid the helmets. Out of sight, out of mind. We don't want to remind her why she needed them and so far so good. There are also a bunch of other behaviors, too numerous to list, that are all lessened, if not gone altogether. I'm always skeptical of anything new we try and I really wasn't expecting anything. We're kinda dumbstruck.



#75 We've

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Posted 11 June 2017 - 02:57 PM

Swamp, Im glad this is working for you guys. It is ridiculous that stuff like this was underground for so long.

#76 Huckleberry

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Posted 11 June 2017 - 06:26 PM

Swamp, Im glad this is working for you guys. It is ridiculous that stuff like this was underground for so long.

 

Its working for so many people :)



#77 Eleven

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Posted 11 June 2017 - 07:39 PM

Swamp, Im glad this is working for you guys. It is ridiculous that stuff like this was underground for so long.

 

You have no idea....

 

It should be completely legal for medical reasons.  I can't/don't enjoy it recreationally and haven't for a very long time, but grass has medicinal properties that are just unsurpassable.



#78 BRAWNDO

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Posted 11 June 2017 - 09:07 PM

You have no idea....
 
It should be completely legal for medical reasons.  I can't/don't enjoy it recreationally and haven't for a very long time, but grass has medicinal properties that are just unsurpassable.


I could not agree more that it should be legal for medical reasons, its use for seizure treatment particularly in pediatric cases is well documented and I believe it's a superior choice for treatment of chronic pain then opioids. Hell legalizing it small amounts for recreational use is not a bad idea.

This coming for someone from someone who is a complete geek and never tried it.

Swamp, I'm ecstatic to hear about the early results witn your daughter. There are a few clinical trials going on in Israel regarding the use of canniboids for treatment for of behaviors with autism, hopefully the results open the door for greater use here. I'll admit I'm watching closely myself. My oldest is Autistic and does hit his head with either his hand or an object when worked up. Unfortunately we have had to replace five IPads, despite Otterboxes. We use Atarax as needed but unfortunately it's usually too late to stop a breakdown. His pediatrician has offered risperdal, but that is an atypical antipsychotic and the long term effects are unknown.

Please keep us up to date how your daughter responds.

Also no one should have to drive two hours for medication for their child

#79 Randall Flagg

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Posted 12 June 2017 - 12:07 AM

Freakin fantastic.

#80 North Buffalo

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Posted 12 June 2017 - 01:13 AM

Not sure if anyone cares or will even find this interesting, but I kinda want to put this out there, anyway.

 

My wife and I went to a new dispensary today. It was 2 hours away and totally worth the trip. It was so nice to feel like we were actually getting medicine from a medical facility. Our old dispensary kinda felt like we were just getting pot from a bunch of stealth hippies who felt like they were pulling something over on the gub'ment.

 

In the past few weeks, I have watched my daughter hit herself in the head more than 1000 a day (I counted). It got so bad that we had to buy her 2 helmets, one for school and one for home, so she wouldn't concuss herself (something she did in February). While Autism is not yet on the list of conditions that Drs can prescribe MMJ for in NJ, we are "lucky" enough to get it for my daughter for her seizures. If we happen to get some off label benefits from it, well then fantastic.

 

In the past, I have had to spend days in Walter White conditions, basically trying to turn bags of weed into medicine, not knowing the potency or efficacy of what I had made. Today, on the way home, We gave her a single dose of pre-made, tested oil,… medicine.

 

She hit her head four times the rest of the day. Four.

 

We have hope again. It's a good day.

 

 

Congrats Swamp, this is a big deal, and while reading the further posts, I have hope for my son's seizures.  Though he has a brain malformation... lysencephaly pachygyria, a neuromigration issue due to a partial chromosomatic deletion.  He is considered a light case but it affects his speech, motor control and he is significantly delayed and will need assistance all his life.  He is on Kepra, Tompomax and Depakote for his seizures. Worried about his liver and kidneys because of the depakote.  Looking for alternatives.  Not sure canniboids are the best but who knows.  I will bring it up.  Also we are not far from Massachusetts and own property up there so it could be a possibility for us to check it out.  Charlie so far has gone from 2 seizures a day to usually 2-3 in groups every 2-3 weeks.  Still they are scary for him, he is 10 though sadly we are use to it.  Anything with Children, many in my Charlie's group who have autism could benefit would a great thing.  Keep us posted.... we need to know, keep spreading the word.


Edited by North Buffalo, 12 June 2017 - 01:15 AM.