Currently I write for emaxhealth.com; a few months back I wrote a well received article called Parental Social Isolation and Autism, this article spoke of how we parents isolate ourselves after our children's diagnosis. For those of you that have not read the article I encourage you to follow the link and read it. It is a very informative article on a very real problem we face.
Autism Isolation Syndrome:
I suffered from this syndrome for years, still do. Some days I am floating around stage 1, some days stage 2 and some stage 3. It seems that no matter what I always lose myself on the days that my child is isolating himself. I am terrified to go out into public on some days [not because of the strangers so much as because of us. It's a new environment no matter how hard I try to make him ready for it.] There is only one thing that gets me through these times. That isn't my husband or my family--no, it's the fellow parents of autistic children I have met along my journey with autism. The ones I have never and probably will never meet.
See, I lived many years without a single support system to turn too, no one understood. One day I met two women named Kat and Nunu; from that day on everything changed. Kat introduced me to what it felt like to have a friend that "got it" and Nunu introduced me to some of the important things in this life: support groups, listening to one another without judgement, and being there for one another [many years later she is still there for me]. These women changed my life.
The Friends I Have Made:
The ladies and gentlemen I have met over the years have all impacted my life; each left their own footprint on my soul [some continue to do so]. A few I can laugh with; a few I cry too; and a few I joke around with. All of them I know I can talk to, complain, and be open with about autism. In other words: they get it because they live it too.
The couple of individuals that I keep close to my heart:
- My solace from Colorado
- My runner from Massachusetts
- My Australian beauty
- My lady bug sister from Indiana
- My gigantic eared brother from everywhere
- My amazing lady from Ohio
- My Alaskan/Washington beauty
- My sweetheart sister-in-law
- My British colleague
- My strength and fellow colleague from Wisconsin
This is a hard life to live, definitely the most rewarding life one could be lucky enough to live, none the less a hard one. This group of people mentioned above are my "Autism Support Team" I know I can go to any one of them at any time and receive support. I take the frustrating things to them as well as the encouraging. [To my luck my support team happens to have international links so I literally have someone I can turn to at almost anytime of the day] Having a group of people like this surrounding you is crucial in the special needs world, especially when dealing with Autism Isolation Syndrome. Even if your "Autism Support Team" is reached by turning on a computer or dialing a phone number rather than going to their home these people are irreplaceable members in each of our communities. Without them you could very well lose your mind in some instances. You have to have some kind of support when living with autism. Just like our children need support--We need support too!
My plea to you:
If you feel overwhelmed; tired; depressed; even happy- reach out to the people that understand better than anyone. Ask the parents that have already been through what you are going through. Get advice from like-minded individuals. Develop bonds that will last a lifetime. Online support groups are a popular and effective method of personal support- they are also easy to get too and you don't have to mold your life around meeting times. They are always open. No matter how you do it find your "Autism Support Team" as soon as you can, it'll change your world.
Just be careful which support groups you join and what advice you listen too. Always research information you obtain from individuals online and be discrete about information you share. You are also encouraged to read the aforementioned article to learn more about Autism Isolation Syndrome and how it affects us as special needs parents.
Other Sites of Interest: