APRIL IS AUTISM AWARENESS MONTH

[diamondseeker2006]

Not to derail, but I'm curious if any of you moms can tell me if your ASD child has really strange sleep habits? For years my son has tried to be on a "normal " sleep/wake cycle, but then he goes right back to up all night, sleep all day.

Oh, that is one of the big things with my son. He has never had a normal sleep cycle. It's awful. He took meds for years but I have come to the conclusion that they do more harm than good in many cases. They were never tested for long term use. He went through literal hell getting off, but he did. So sleep is irregular again.

 

[diamondseeker2006]

@princessandthepear and @CHRISTY-DANIELLE

Also look into ABLE accounts. They are like the education 529 accounts where interest is not taxed but for special needs. It has been awhile since I have read all the information, but I think the ABLE had some advantages. Your states may call them something different. I think it might be beneficial to have an ABLE account and a SNT in some cases.

Here's a link that explains it and has state specific info:
http://ablenrc.org/

We definitely plan to utilize this. I think you can choose a trustee. You can save up to $100,000 without the person losing SSI or disability.

 

[CHRISTY-DANIELLE]

@diamondseeker2006- that's interesting, thank you for sharing! I talked to my son about it tonight, he said he feels like he has no circadian rythym. He sometimes sleeps 6 hours, sometimes 12. He will stay up all night, and be heading to bed when I'm leaving for work. Or, like today, he woke up at 4am. I can't really plan much to do with him, never knowing if he's asleep, awake, just went to bed?? I have to give him plenty of notice if he has to be ready by a certain time to go to an appt. It was different when he was in school, but he was always tired then, fighting to have a normal schedule__ when really, he's just not wired for that.

 

[diamondseeker2006]

@diamondseeker2006- that's interesting, thank you for sharing! I talked to my son about it tonight, he said he feels like he has no circadian rythym. He sometimes sleeps 6 hours, sometimes 12. He will stay up all night, and be heading to bed when I'm leaving for work. Or, like today, he woke up at 4am. I can't really plan much to do with him, never knowing if he's asleep, awake, just went to bed?? I have to give him plenty of notice if he has to be ready by a certain time to go to an appt. It was different when he was in school, but he was always tired then, fighting to have a normal schedule__ when really, he's just not wired for that.

100% the same as my son.

 

[diamondseeker2006]

Excellent explanation of ABLE accounts and Special Needs Trusts:

http://ablenrc.org/sites/default/files/docs/events/ABLE and SNTs Webinar Presentation Final.pdf

 

[princessandthepear]

@diamondseeker2006, Thank you for the information on the SNTs and ABLE accounts. We really appreciate the information and intend to investigate further when her father returns from his business trip. ATM, she has a job interview scheduled with a vendor business that SO works closely with! We are practicing interview scenarios to prepare and help calm her.