At the request of collegeman’s lifeskills coach I am reposting this blog from July 2009, about support on the internet. Elise
I was thinking about the internet and how wonderful it is. When my journey into the world of autism started there were no outlets for parents. There were minimal support groups and quite frankly no information out there to help in your child’s quest. I had learned to keep to myself and share my problems with very few. We had been rejected and my son abused by the school system we had lived in so we moved. We had no idea of our rights and the school districts obligations to our child. Luckily we met a wonderful Special Education director who basically took us by the hand and led our child into the promised land of "HELP." We were very fortunate.
Today however, parents can come armed to any meeting or teacher discussion because its all there on the internet. Very well established on the internet as a matter of fact. What a wonderful thing to know you can search for answers. In fact, I have listed some of my most favorite websites just to the left of this blog. They are great not just because they inform, but because they are not afraid to send you somewhere else for information. That is the sign of people who truely care. "Let us help you, but if we can’t then try these links."
The next best thing I have discovered was support forums on the internet. I had no idea how helpful people can be to each other. The odd thing that had happened to me, was that in joining a local group almost 15 years ago, my son was not disabled enough, so there was jealousy involved. That I never got. How could you resent someone else’s child for not being autistic enough? So I gave up finding like-minded persons. However,, I now have found an outlet for myself. I go on several forums and either give advice, or just read and actually, even wih almost 15 years experience, learn a great deal. It’s really about experiencing a great deal of human fortitude. The parents of these children are wonderful. They are working day and night to help their offspring lead the best life that they can. When they talk of the fight, I know how they feel. When they talk of the pain, it brings back some bad memories, but I can tell them it will be ok. When they talk about being isolated, I tell them to keep coming back to forums and you are not alone.
I have to tell you, that I found a fun outlet, Twitter. If anyone wants to look me up I am aspergers2mom on Twitter. I can tell you I am having a great time. Posting short statements about your life, and responding to others. It’s like having a realtime conversation with someone who really understands you. It’s also a great way to get information. I have found wonderful posts, other blogs, discussions about relevant topics. I followed what everyone was saying about Judge Sotomayor and it was fun and fascinating. Lets not forget it also has a powerful political application too. It’s how the Iranian oppositon got its message out.
I have to say that I have even noticed a change in myself since I started blogging, joined forums and tweeting. I do not feel so isolated, I do not feel so alone. I feel like I am part of the larger world, when I even sit in my living room and try to organize my children’s lives. Studies say that the worst part of raising special needs children is the isolation. It leads to depression. They now say that moms,( I guess because we are still the primary caregivers, alone while the husband goes out into the work world), have an unusual amount of cortisol, stress hormone, in their system. I don’t doubt that, but I wonder if they did a study about moms who tweet or blog or surf the net for help, what their cortisol levels would be. I know I feel a whole lot better lately. I know I look forward to reading and surfing my favorite sites. I know I like to see if anyone read what I wrote. I always say good morning to my twitter friends.
For this adventure I have to thank my sister. She convinced me of the power of this medium. She told me it would help me. Sometimes younger siblings can be right. So to her I say well done. Your pain in the butt big sister finally listened to you and you did good.
Now this is my new mission. To help moms and dads out there who are isolated, and in need of support. If you know any, get them on the internet. Get them writing to others. Get them to interact, yes, this is interaction, this is connectedness. Help them, help themselves. Help them remember that everything about life is not a fight. Sometimes, just sometimes, you can find something you enjoy and it brings you back to who you are. It’s ok. It’s not an abandonment of your child, because you cease to abandon yourself.
Until next time,