This week on The Spectrum, we talk to Helen Sui from Parents Place about life as a mother of a child with Autism. Also, Vanessa Kahlon will be speaking at Parent's Place on July 9th.
Enjoy!
Enjoy!
(1) Tell us a bit about your support group
Parents Place support group started in October of 2011 by Andjana Pachkova and her husband Martin Herbst. They were looking for a support group that dealt more with the emotional aspects of having a child with ASD. They wanted to find a place where they could share their feelings with other families about the grief they were going through and with the help of a staff member at Parents Place started the group. Today our group still share our ups and downs and families also more than happy to exchange resources/recommendations, a helping hand or a hug. We meet most every first Wednesday of the month from 6:00pm to 7:30pm. Being a part of this group has been a great experience. I've learn so much from all these wonderful parents I've met through the years and am amazed by their courage, strength and perseverance. When I see and listen to people like that it is contagious and I want to be a part of that.
(2) What was the most difficult aspect to accept when your son was diagnosed with ASD? How did you come to terms with the diagnosis?
The most difficult aspect to accept for my son was that there might be might limitations to my husband's and my dreams and hopes for his future. I think everyone wants the stars and moons for their children's future and when we got the diagnosis, we started to question what is still possible for our son.
My turning point in acceptance was probably three months after my son's diagnosis—I decided to go to Parents Place's support group meeting. I was feeling lost as to what to do for our son and still on the mend with his diagnosis. I knew I needed to get my act together for our son's sake and going to that meeting was a wake up call I needed. After the meeting I realized my husband and I were not alone, there were other families going through what we were, and being successful in providing great quality of life for their children. I found mentors and wonderful people who understood my feelings and validated them.
(3) When you meet families whose children have been recently diagnosed, have you been surprised by similarities between their journey to accepting the diagnosis?
I feel everyone is unique in their own journey of accepting their child's diagnosis, but perhaps we all go through stages and not always in the same order. Shock/denial, isolation, anger, grief/loss, and acceptance.
(4) What advice would you give to families who are having a hard time coming to terms with an ASD diagnosis?
The best advice I could give someone is to not be afraid to ask for help. A lot of times families feel they must go it alone, because "no one understands" what you are going through or they are still not ready to share their news. When you go to a support group you meet families going through the same thing or have gone through it, this makes a huge difference. It validates all the feelings you are going through. People listen, understand and offer up ideas/hugs. It's a great community to be a part of and it gives you strength. When you see other families living and succeeding with the similar trials you have, you think to yourself, if they can do it so can I.
(5) Do you have any books or websites to recommend to families?
Websites: these are sites and groups I've relied on mainly because these are sites with parents speaking from experience and are communities dedicated to helping others.
http://autismbayarea.org- this is also a magazine this site has connections to all kinds of resources and specific support groups
Peninsula Parents of Special Needs Kids listserv (PPSNK)
Autism Intervention Bay Area listserv (yahoo group)
Books
Autism Revolution by Dr. Martha Herbert and Karen Weintraub
The Out-of-sync Child Recognizing and Coping with Sensory Processing Disorder by Carol Stock Kranowitz
Engaging Autism by Stanley I. Greenspan
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