I do not call is a support group. I like to say that I am helping to build a community for Indian moms. Support is one part of it. When Anand was diagnosed with Autism in 2008, our world was shaken, we knew nothing about it, had no friends who knew anything about special needs or services. We had to find everything on our own. I was angry, unhappy, frustrated and in denial for a long time. Then finally I realized I need to get out of self-pity and do something for him. That’s where I found my real friends. I am so thankful for all my non-Indian special need moms, who helped me and supported me. They are the reason I thought of this community for Indian moms. I always think and thank my stars that I found them, what if I hadn’t. I could go out and seek help, it’s not easy for everyone. I met few moms and realized they are clueless about system and more than system they were struggling within and didn’t know how to ask for help, not only for their kids but also for themselves. I always believed our children get help and support they need but it’s the parents who are alone. I don’t know the dads’ perspective but sure know how a mom feels. Hence the idea of “Moms Network” was born.
 
Can you tell us a little about your journey of being the mother of an autistic child?
 
Anand was a happy and very active child and we didn’t have any idea he was struggling with comprehension. He has amazing memory and he could read when he was 4, he would read and tell the whole story. We didn’t know it was his memory and he had no idea what that meant when he told stories. When he was in first grade, the whole team was trying to figure out the missing piece. Second grade was disaster because comprehension became integral part of learning. By mid-4th grade we had to take him out of regular classroom and send him to language based sub separate classroom. I am thankful to the teachers in his elementary school who helped us with transition. His 5th grade was tough and the middle school was even worse. We didn’t know what we were looking for, what was working for him because we didn’t have anything to measure or compare. And the worst thing is we didn’t know if it was not working. That’s what I do now, teach moms to be vigilant, aware, share and compare notes. We tried gradual inclusion in middle school and by the time he reached high school he was enrolled in a co-taught classroom, a brand-new school building, huge student population and difficult curriculum. We had a roller coaster 9th grade. We give credit to his teachers who were very supportive. When I look back I am sure we could have done things lot better if we knew we could ask for more support. He needed out of the box solution and we failed to provide that, just because we didn’t know how to think as a special need parent. This is one of the reasons I decided to write and share our journey with everyone.
 
How important is having a support group?
 
I would not call it a support group, I call it a village, and everyone should have a support system, special need child or not. It’s even more important to have your network when you are a parent, it is said “it takes a village to raise a child”. The network helps you with questions, therapies, doctors, schools, services and hundreds of questions around it. If you have a problem someone sure has an answer. But more than that this village has helped me get through the emotional roller coaster. The biggest support I get is “you are not alone” and these moms understand me without even knowing me or my child. Everyone should have that feeling that you belong somewhere. The moms totally understand what another mother is going through. Many a times we meet and don’t even talk about our kids but having a meal or tea together helps us to get through. We share notes, helps each other with suggestions, introduce new therapist, system, idea and research.. if nothing else an ear to listen, a shoulder to lean on.
 
Have things changed since the time your child was young? 

Things have changed remarkably; science, research, treatment, therapies, support system, school and services, above all awareness and acceptance. Anand’s pediatricians never noticed any sign. But now children are being diagnosed earlier. I feel increased awareness is very helpful so does the early intervention. People are talking about it and seeking help. When Anand was young, insurance didn’t cover much but now thanks to some warrior moms we are in a much better place. We still have a long way to go when it comes to acceptance but I am hopeful we will get there soon.
 
What advice do you have for parents who have a child diagnosed with autism? 

“You are not alone” It is good to have the answer rather than wonder what is missing with my child. Seek help and find other parents with similar needs. Build your network, it’s OK to feel angry and frustrated. But in the end, you are the one who needs to believe in your children and work towards their independence. Educate yourself and learn more about system, services and new research. Also take care of yourself and other children in the family. My older son and my husband are my biggest support system. Anand is sure center of our world but we all make time for each other.
 
What help is needed for people with autism? 

Autism is different for each child; no two children have similar profile so everyone has different needs. They sure need therapies and services but at the same time Autism needs awareness, acceptance and empathy. They need a place in society. I have become part of many organization to support that mission. There is lot of advocacy work going on, please be part of your local town office. I am actively involved with MFOC ( Mass Family organizing for Change), go to State house, meet our legislature staff frequently.
 
Anything special you would like to share?

We have a Mom’s Network, please share the information with anyone you know who has a child with special needs. We meet once every month for group dinner and multiple small lunches in various towns. We keep in touch with each other through WhatsApp group and share ideas, help and support each other. I urge other parents to support families with special need children, be kind, offer help, include those families in your circles, world will be a much better place by accepting and including families with special need children.