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Wednesday, January 6, 2010

Anyone out there?

Lately I have really been craving contact with other mothers (or fathers) of autistic girls. I have been searching for a support group in Massachusetts especially for parents of girls with autism, but none seems to exist, and I can find very little on-line either. They say 1 in 4 children with autism are girls, but I don't know where they all are. Information I do find seems to be about girls with Aspergers or high functioning autism, which is not like Janey. I think autism is different in girls, and it would be great to have someone to talk to about that. I really don't know who reads this blog, except people I have told about it. If you do, and would like to connect, please leave a comment, or if you would rather, email me at It would mean a lot to me.

Janey has been fairly cheery lately, but I have worries her talking is decreasing. Lately I only seem to hear requests type talking "I want Winnie the Pooh" "I want ice cream" and nothing else. And at times it seems like it's harder to understand her---she always spoke clearly in the past. I really don't know where to turn sometimes. I feel like it's a slow acting emergency---I can't take her to the emergency room and say "I'm losing her!" We are extremely tight with money, and so many things that would help cost money. I need to start calling clinics and hospitals and just make appointments, but I worry so about the co-pays and deductables.

I've been feeling frustrated with talking to Janey in the car and other times. It seems like I keep up a monologue all the time and I don't know if it does a bit of good. I don't know if she is processing anything I say. Should I just shut up and give her some peace and quiet? I talk constantly to her. It feels right to do that, and that is what I did with the boys, and they are quite the talkers and have great language skills. But does it just overwhelm her?

I hope 2010 is a good year, one where I get some answers and Janey makes some progress.

1 comment:

raynette jones said...

i just wanted to comment here and it looks like it is about four years too late to help you on that day lol but i do want you to know tha i am praying for your family now for sure. I am not a mother of a kid with austism. long story short my kid is now 22 and has been chronically ill since 11 with leukemia and a bone marrow transplant survival thank God and also has an autoimmune diease that only 300 people have. the reason i started reading your blog is because I am always looking to see what other people are doing that may help me mentally as a mother or something out there to help my son. He is NT and is so "better off" than others but his quality of life is like 20 of 100 and i still dont know what to do to make it better but i will keep trying till the day i die. i am always at a loss as to what to do next