Seeking Moms with Autistic Children in the Monroe County, NY Area

HI C. ~ I can not personally help- but was told to forward these to you, as they may be of some assistance, that you might find some 'contacts' and other blog areas to talk with other moms. ALL THE BEST to you and all the kids!

http://www.albany.edu/psy/autism/w_aut.html

http://rochester.kidsoutandabout.com/resources/community....

http://www.autism-pdd.net/LINKS/newyork.html

ABOUT ME: Now, SAHM : we have six children : ages 22 -5!!!<G.B,B,B,G,G>

Hi, C.:
My son is also diagnosed with Autism Spectrum Disorder (ASD). I've found a lot of info through the UNYFEAT group, Upstate New York Families for Effective Autism Treatment.

They have a website UNYFEAT.org and a group on Yahoo. Lots of local parents who have kids on the spectrum.

I'd be happy to answer questions, or you can contact someone at UNYFEAT. We are in the Penfield School district, so I don't know about Webster schools, but someone in the group might.

Warm regards,
J. M.

Hello C.,

I don't live in Monroe county, but very close. We live on the northeast border of Orleans county, in Waterport. I live about 18 miles from Brockport.

I have three children (not really "children" anymore!). My oldest daughter is 24, my middle daughter is 21, and my son just turned 18 and he has Autism,ADHD,and OCD. He is still in high school, and is mainstreamed for about 1/2 of his school day. They have wonderful programs where he goes, and he is doing very well. They are letting him experience different jobs to see what he likes and what he is able to do.

My son is verbal, so we feel very blessed. His fine motor skills are still not good as he has poor muscle tone in his hands. He is very, very good on the computer though, and he loves looking up things he loves like music and movies.

My faith has helped me so much get through these years, and continues to do so.

Your son being able to tie his shoes is such a milestone!! How proud and excited you must be..:)

If you want to get in touch with me, please don't hesitate. I know how important it is to be able to connect with someone who also has a child with Autism/PDD-NOS.

Take care and God Bless,
S.

Hi Christine,

I don't live in your area, and my daughter has very high functioning Asperger's; but two websites have helped me tremendously. They both have forums that put you in touch with other parents dealing with similar issues, as well as providing invaluable advice.

www.autismspeaks.org and www.wrightslaw.org

We also have an education lawyer and a special advocate who is available as a parent member to the IEP team provoded through the school district.

Best of luck in finding the help you seek.

Val

Hi Christine,

I am on the Long Island Committee for Autism Speaks. AS is an organization that started about 3 years ago with mergers from pre-existing organizations such as NAAR and CAN. If you go onto the website - www.autismspeaks.org and locate your area, I believe there are blogs and sites that perhaps you can find different avenues for you to help thy fellow man who have children with the same situations like yourself.

I have been with NAAR/Autism Speaks for 7 years, on the walkathon committee and just did our 8th walk this year at Jones Beach with 24,000 walkers generating 2.3 million dollars to help with research in finding a cure. You might want to check with your local area to see if they have a walkathon and AS could use all the volunteers and perhaps you might meet so many wonderful friends .

Hope this helps,
J. O'

iam a mom how lives in WV, i have four kids one i know how has autism, she is six my son just turned three and is showing same syptoms as his sister theres no help with my dather with autism she is serverly autstic and has no vobel skills my sons the same i lost my husband last year, and so its going to be a tough road for us, because if you cannot aforde treatment it takes alot of fighting, to try to get help, but our kids are the futrue and we cannot give up, even if no one hears us, my name is M. C. thanks i have a facebook and a my space it helps to talk to other moms how have the same problem

Hi C.,
I am a grandmother whom has guardianship of my 7&1/2 yr.old grandson. He's had a seizure disorder since he was 2 yrs. old. Between the seizures & medicines he also has delays & developmental {especially cognitive} issues. His are very much like your sons & an autistic behavior is evident, even though the Drs. say he is not autistic. The symptoms from his disorder are extremely similar. We also consider him a blessing & love him deeply! His basic academic levels are very minimal....such as counting, knowing his colors, writing,buttoning,etc. He has a short attention span which only allows us a little here & a little there to work on one thing at a time. He has come a very long ways from 5 yrs. ago. Michael goes to KCH Marcellus Elementary in Onondaga County,NY. He's on a 1-1 basis in a special needs class while intergrating in his 1st. grade class of 20. I know we are in different schools & counties, however I would like to help or keep in touch if you so choose. I have always been Michaels advocate, but without Gods help I can't imagine where we'd be! When Michael was 4 yrs. old we came ....as the Dr. put it ....a pinpoint of losing him !! He was also born with hydrocephalus which he never needed to be shunted up until he was 4. This is a seperate health issue that has nothing to do with his seizures.The Dr. said in over 20 yrs. he never saw hydrocephalus change as fast or as much as his did. It happened within 3 days & made me realize more than ever how much Gods watched over this little guy of ours.I believe with all my heart that God will watch over him, however I also truly believe that being his advocate is essential.
One of my favorite movies is " Miracle Run", Which is about a mother that raised twin autistic boys. She was quite the advocate & I admired what she was able to accomplish. It is based on a true story & well worth watching. I think you would really get alot out of it ,if you haven't already seen it! I know I did !! I am a 53 yr. old mother of 3 girls & grandmother of 9 grandchildren{ 5 girls & 4 boys}.I have been in relationship { after divorced} for 13 yrs. My family is my world & I truly enjoy helping & talking with people! Hope I can be of some comfort to you !
Keep in touch if you wish! ____@____.com
Cherise