Any Asperger's Moms Out There?

Updated on June 08, 2009
A.K. asks from Boynton Beach, FL
13 answers

Hi all! My sisters 3 yr. old has been given a "possible asperger's" diagnosis with alot more testing to go.....she's in GA and I referred her to Mama source for her area for support but figured I'd see if anyone around here is familiar with or has a child with Asperger's.....seems to be relatively new and rare overall and she could really use contact with someone who's been through where she is right now....alot of fear, guilt, anxiety, denial, etc......well let me know if there are any of y'all out there who wouldn't mind sharing! thanks! A.

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So What Happened?

Wow! Y'all are great.....I have forwarded the info to Mel and will give her a call over the weekend....she also has a 10 month old so time to chat is scarce!! I don't want her to feel bombarded but know she will reach out as she feels connected to each response. I believe she said that if the diagnosis is "official" then her insurance will cover many of the services that have been mentioned.....it's just hard to know what's really neccessary when the child is so high functioning but seemingly mal-adjusted in a few peculiar ways????? Guess we're all learning! I spent a few days with them over Christmas and she and I have very different parenting styles.....I'm more tough love and she's much more permissive and laid back....it's hard for me to not judge when some of the behavior seems a result of being spoiled.......nonetheless, bottom line is that we all love each other and are pulling together to do whatever it's gonna take to help her family and their little boy have functional, and hopefully happy lives.....wow, guess I kinda needed to get a few things out too! anyway, I'm sure this won't be the last time I write about it and I know I'll have things come up with our crew.....so thanks again for all of the input and keep it coming if anyone or anything comes up=] A.

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L.H.

answers from Miami on

http://www.centerforautism.com/

I have heard a lot about diet & also the importance of Omega-3 fatty acids like fish oil...

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B.B.

answers from Melbourne on

Hi A.,

My son is a diabetic (type 1-insulin dependent) and I had the privilege to be involved in a local support group with parents with various medical conditions. They meet on Tuesday mornings in Eau Gallie at a church. The meetings are free. Would you like me to ask the coordinator if she could put you in touch with other moms who might be interested in talking with your sister.

Please email me directly so we can talk off board. [email protected]____.com

1 mom found this helpful
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L.B.

answers from Port St. Lucie on

Hello, yes my step-son was FINALLY diagnosed w/ Aspberger's a few years ago! Would be happy to share notes w/ your sister!

L.
[email protected]____.com

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J.F.

answers from Boca Raton on

an excellent resource is autismspeaks.com
very active org that has put autism at the forefront of focus at fed. level; CAN merged w/ autism speaks; you will find lots of resources through them..............
as to the emotional journey, takes a lot of time to sort through so best to find people who have been through it too. sis can prob use a lot of respite at this time

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S.R.

answers from Burlington on

Hi A.,
My 11 year old step brother has Asperger's and the diagnosis is recent. His parents are dealing with a lot of the same fealings, I am more on the outside looking in, but I hear a lot about the situation from my mom. Feel free to contact me if you want more info.

S.

[email protected]____.com

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P.B.

answers from Orlando on

Hi A.,

First of all, 3 yo is still developmentally young and your sister should consider a possible second opinion if she is not convinced after all the tests come back. I have a 15 yo son with Asperger's/ADHD/OCD. He is quirky, brilliant, funny, strong-willed and loving. When younger he had terrible tantrums, poor social skills and motor skills, and was more challenging but with medication and a supportive enviroment he has dealt very well. In the olden days it was real difficult to get support but now things seem to be much more current with this diagnosis. There are medications a child can take if needed to help with symptoms. In public school, your nephew can get an IEP (individual education plan) to help with learning. Counseling helped my son when he was younger. In some cases you can qualify for disability payments to help with medical costs.

The main thing is to love this child and know that the journey will be wonderful just different and that is ok. Someone once told me it is like you planned a trip to Europe (ie: expecting a "normal" child) but you ended up in China instead. The journey is different but still filled with lots of good stuff. It is important to build up the child's confidence (and your sister's confidence-it is not her fault-it is a medical condition like diabetes, etc.) and be a strong advocate for the child and find meaningful, creative experiences that work for both parent and child. For example, my son likes science so we often went to the science center when he was young. We catered to his needs such as lots of books and built up his strengths as much as possible to compensate for his weaker areas. Many children with Aspergers' are high functioning and sort of come into their own more as they mature. My son plans to be a lawyer and while he still struggles w/motor skill stuff(can't tie his shoes) he has learned to accomodate for himself when needed. He uses a computer for writing and askes for help in other motor skill areas. My best wishes for your sister and her child. You are a good sister to her so keep up the positive support.

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C.B.

answers from Daytona Beach on

Hi A.. I'm C. and the mother of two boys, Blaine is about to be 7 (has ADHD) and Devin is 4 1/2 (has Moderate Autism). I am a member of a group of parents of Autism here in Palm Coast. The founder of our group not only has a son with Autism, he was diagnosed with Asperger's at the same appointment as his son was diagnosed with Autism! He is a brilliant man with lots to say about everything ASD! If you or your sister would like to contact him, I know he would love to talk to you! Autism is his obsession and he jumps at the opportunity to talk or learn about it. I'm not even sure how many degrees he has on his wall but I can tell you that right now he is a practicing doctor.

If you would like to know more or talk to me, please email me! Talking to a grown, successful, socialized Asperger's person really gives me hope and I think it might be helpful for you also!

[email protected]____.com

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R.C.

answers from Orlando on

as far as I know she might do well connecting with a local autism group, sort of in the same family. then she could branch out to more specific times. Good luck!

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A.J.

answers from Fort Myers on

A.
your sister is lucky to have you to help her.. i have some info. unfortanatly aspergers in neither rare or new.. it is an autism spectrum disorder. my 6 yr old was diagnosed at 3 with pdd-nos. pdd nos is a pervasive developmental disorder.. nos means they dont know what one he has yet . could be asbergers, cold be high functioning autism.i suspect that is your nephews tempory diagnose as well. unless the case is severe autism they usally dont label till 6 or 7 . the emotions your sister has are very normal. it is important that she know she did nothing.
i can offer some advice.. weather your nephew has pdd, asbergers or full blown autism diet has been known to help. there is a diet called gluten and casien free. and it does help these kids. another very important thing is therepy. they need therepy and the earlier the better. many times once insurance co find out a child has a develpomental disorder they will not cover therepy any more. it is important that your nephew be evaluated by the early intervention services. every state has it. they will start therepy free of charge. at three he will most likley have to go to school to recive the therepy, but beliv e me it does wonders. a pdd child should recive speech, ocupational and sometimes phycial therepy.
and the next bit of advice i will say is that your sister needs to research vacines and vacine reactions.. if i had to guess i would say that your nephews symptoms started after his 15 or 18 months vaccines.. :( it is still being proven, but many pdd cases are a result of vaccines. many states have religios exemptions should she stop vaccination.. i have a lot of info on vaccines.. are they really necassary but i dont want to getinto a debate w/ any one. if you or she wants more info i can get it for you.. i am sorry your sister is going threw this. this disorder is now being diagnosed in 1 in every 150 kids. it is more common in boys . for every girl that has it 4-6 boys have it.. it is hard on the whole family. thank you for supporting your sister.. too bad yall were not closer. have her try to find an autism group to join.. also see if her area has CARD services.. they help with finding support.. be there for her to cry to.. it is a life long disorder, but w/ therepy the outcome can be greatly improved.. my 6 yr old is in regular kindergarten.. he does recive special ed help. but just last year he was not talking or potty trained.. so belive me diet and therepy can and will help.. huggs

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D.G.

answers from Boca Raton on

I feel that my 4 yr old Daughter is Aspergers. If she is getting a diagnosis of that already that is pretty good. Aspergers is usually not dignosed until the age of 8 or 9. My daughter was diagnosed PDD when she was 2 1/2yrs old. I said something to her pediatrition once about how I though she was Aspergers and she said that she felt the Aspergers was underdiagnosed. I have child who is High Functioning PDD also. I would love to talk to your sister to see if our kids have some of the same things in common. Just yesterday my daughter told me "Mommy their are 3 girls in the park......with us that makes 5" I could not belive it. We went to the doctor Sat and there were other parents there with 4 almost 5 year olds that could not belive all the things she knew because there kids did not know them. Have you sister e-mail me

[email protected]____.com

D.

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S.C.

answers from Boca Raton on

I'm a single mom with 2 boys ages 2 and 4. My 4-year-old has Asbergers. He's a wonderful boy, very smart. You will face many trials in your journey, but these children are gifts from God. I researched a lot on sensory disorders. These children seem to fit the bill in sensory stuff very often. I use sign language with my son to improve his receptive skills. He goes to a local school for Autistic children that has a high functioning PDD room. He has a 2:1 student teacher ratio. And it's a public pre-school. Having one-on-one support (or close to it) is very important to these kiddos. Therapies that work well are art, music, water, horse (and other animals-dogs, bunnies, etc), play, ocupational, physical. Just be creative. Trust your gut. You really DO know best for your child. Be patient. It takes these kiddos longer to learn things than others their same age...especially behavioral things. Don't be afraid to put you child with other special needs children. These kids like to help and it will benefit them to have the positive reinforcements rather than the negative attention they would get from a regular ed class or play group. It's okay to be different. It's okay for them to want to fit in too, just make sure you have the proper allowances for them. You CAN ask for the help. In church my son has a Special Needs "Shadow" (someone that goes with him into the reagular Sunday school). Also, you can appy for SSI (social security dissability income) for your child that will help offset the cost for therapies. Feel free to contact me for more info. [email protected]____.com ~S.

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A.B.

answers from Miami on

I do not know where your sister is located in GA, but there may be centers for autism and related disorders at the universities there - here there are centers at Univ of Miami and Nova - I would even call them and ask about where she can go there. Also - she can look at an incredible center in North Carolina that may have info for her - it's called TEACCH and they can be reached at [email protected]____.com mostly deal with true autism but have programs that every child with special needs can benefit from.

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G.R.

answers from Melbourne on

Hi A.,

I have a son who is 15 years old who is austic and is alittle asperger. I went thru alot when he was young around 2 when he was dianosed with it. You can give my email to your friend it is [email protected]____.com if she needs someone to talk to about asperger's syndome. I was in Delaware now I live in Florida. If she needs more info tell her to email me.

Take care

G. R

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