Support Group for Moms of Autism

Updated on May 16, 2013
1.R. asks from Kenosha, WI
11 answers

I have a teenage daughter that has Autism and is nonverbal. I cant seem to find any moms or groups that we fit in with. Maybe I need to search more. However, I have only found groups/ moms with younger children or/and higher functioning children. I am open to those groups but, I really would like to find others to relate, encourage and get advice about the teen years and beyond. Most of all To know that I am not alone. That someone else has never been able to have a conversation with there child or will never hear the precious words "I love you" even though she will care for that child the rest of her life.

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So What Happened?

Thank you to everyone that responded to my post. I will reach out to Easter seals, arc and her Teacher to see if they have information about groups/ moms in search like me. After 12 yrs. everything changes and I was not prepared - No one hands you a "what to do" manual when they become teens and older. no longer would it be easy to find any programs or services in the community because of her age. I didn't know how difficult it would be to find programs/ clubs for the Summer and after school if needed. no one had answers about the Female changes and how to properly care and help her with this because she is incontinent too. It is difficult to one day realize that when she was smaller she could fit in with the younger kids classes at church/ community activities but now she is to big. Even though mentally she is there age, physically she has outgrown them. Who new when she started high school, everything changes and she would not qualify or there would be limited resources for many things that she once did. It would be nice to have such information and support as we did when she was younger. Maybe because Autism awareness is not very old and the need has yet to be recognized. thanks everyone.

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S.R.

answers from Chicago on

A forum I belong to may help you. It's called IPPADDU (Illinois Parents of Adults with Developmental Disabilities United). [email protected]____.com. I can forward the latest issue to you that I received. I see you live in Wisconsin, but the majority of issues folks that post to the forum have cross state lines. As the parent of a now 19-year old son who is on the Autism spectrum, I can relate. This group is primarily an online community. Feel free to contact me privately.
S. Redfern

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J.W.

answers from St. Louis on

I am not big into support groups, don't know why, I guess that is what my family is for. I am friends with the parents of my son's friends but that is a benefit of high functioning, they have friends that can be easily defined.

That is not to say your daughter doesn't have friends but I would imagine it is so much harder to spot.

So far as I love you goes, babies don't communicate like children or adults but you can feel that I love you just as strong as words. How they look at you, how they need you, even though non verbal it is palpable. You may never hear I love you but always keep your heart open to feel it. :)

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M.F.

answers from Phoenix on

I have a friend who is very active with Autism Speaks in the western suburbs of Chicago. Not exactly your area, but close-ish. I would be happy to pass on your email address to her to see if she can help put you in touch with some support groups. PM me if you'd like.

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S.B.

answers from Dallas on

Where do you take your daughter for her medical evaluations? Perhaps they have contacts with other parents or support groups that would meet your needs. Or perhaps a teacher that she works with might be able to help you connect with someone that is faced with the same issues. Because of privacy issues, they may not be able to give you names, but with your approval, they might be able to give your contact information to others who might contact you. Good luck. You might also check with a local autism organization--they may have an interest board you could join.

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P.K.

answers from New York on

Call Autism speaks. Maybe they could help. How about your daughters school? You may have to start a group of your own. She may not say the words, but she love is shown in many ways. Hope you are successful. You might find an on line group. That can work too. Friendships are formed thru electronics lol.. I have a great friend in Australia I met playing Scramble with Friends. We have so much in common. We are hoping to meet one day. Good luck to you.

You may want to contact The Anderson School in upstate Ny. They could always pass your name on to a parent who would be willing to talk to you.

Let me talk to a friend wo has a 19 yo autistic daughter. Maybe she could help. They made the decision to send her to a school in Mass. They had a six year old dying of brain cancer at the time and could not handle both. Age has aged out but is now living in a group home. I will PM you my e mail address.

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J.C.

answers from Philadelphia on

I have no doubt that your daughter loves you.

I hope you find the support you need. I can only imagine how difficult it would be to have a nonverbal teenager.

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J.R.

answers from Chicago on

Our church has a support group for parents who have special need children. Holy Cross, Libertyville. ###-###-####

Good luck to you!

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S.S.

answers from Chicago on

Does she type? Has she learned the computer? You have some great help there, but I want to add this: there are a number of autistic people who have amazingly wonderful feelings inside that they are able to write out and that might the "I love you" that she can't say. It is worth a try. If you have her in mainstream schools they might be trying to teach her to type. If not, give it your own try. Best wishes.

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M.G.

answers from Seattle on

I'm not exactly in your boat as my child is only 6 however I can relate to not being able to relate to groups and moms with parents whose children are HFA and verbal. Look into ARC, as well as local support groups from your local parks and recreation department. It's also possible to find groups or others through your daughter's school. If all else fails try to start your own group. That looks as though that might be something I have to do.

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R.K.

answers from Appleton on

Check meet-up.com. I know there is a group for moms of autistics in the Green Bay - Appleton area.

You could join that group and try to start something closer to you.

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