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dusti
@dusti

Posts: 3
Joined: Mar 15, 2016

Caring for young person with FAS, Marfan's & learning disabilities

Posted by @dusti, Mar 15, 2016

I am the primary care giver to a young gentleman living in my home who has marfans syndrome, fetal alcohol syndrome. has learning disabilities. I am looking for some type of support groups, i cannot get any in home assistance from his insurance. What can I do ????

REPLY

Hi @dusti,
I wonder if you can find any help from The National Center for Medical Home Implementation? https://medicalhomeinfo.aap.org/tools-resources/Pages/For-Families.aspx

You might also be interested in connecting with @pricet and @ljpettit on the issue of fetal alcohol syndrome https://connect.mayoclinic.org/discussion/fetal-alcohol/

hi, this is Thomas young i doin fact have marfans syndrom Im here for whatever i havnt found any support groups however im open to talk or discuss anything.. feel free to contact me

@dusti I just came across this post. I hope you have found some help by now. I know a little about fetal alcohol syndrome but more about brain damage and retardation. The results are somewhat similar. I encourage you to visit some Al-Anon and Al-A-Teen meetings for input. If you don’t care for the meetings, please at least read some of the literature. I has really helped me understand what alcohol does to the body and mind of users. One of my sons has cerebral palsy, brain damage, seizures, and impulse control issues. I attended a parenting class that encouraged the use of natural consequences rather than force to train children. It takes longer, but it is much more effective and for a much longer time. It will make you work also. You have to figure out an appropriate discipline for each infraction and set clear expectations for the child. If you let it “come out in the wash” you will extend the chaos that is life with a person physically, emotionally, behaviorally and mentally disabled. You are in my prayers from this day forward. Bless you and your loving heart for taking on caregiving for this broken child.

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