Autism, Special Needs, And The Benefit Of A Circle Of Friends - Pt 2
By Jean Shaw
My autistic son has a Circle of Friends.
For those of you who don't know, a Circle of Friends are a group of people who are willing and able to spend a few hours each month (on a regular basis) with the person with special needs, to provide opportunities for that person to have fun doing the things he or she likes to do.
That was a bit of a mouthful but it just means the "special" person has people to spend time with outside of his or her immediate family - something many people with disabilities don't have.
When it was first suggested I set up a Circle of Friends I was very apprehensive and thought of loads of reasons why it wouldn't work. For a start my son doesn't really speak, at least not in the way you and I understand speech and his autism can be difficult to cope with even if you know what he wants. I still bear the mental scars of earlier years, but you have to beware of mental scars. They can really hold you back and prevent you from doing things. Actually he's really moved on, is much calmer, and tries very hard to communicate in whatever way he can, just not verbally. I should have said, therefore "his autism USED to be difficult to cope with".
Another concern was that I couldn't afford to pay, so anyone agreeing to be in my son's circle would have to be a volunteer. Somehow I couldn't see myself asking anyone to do it. Truthfully, however, even if I had lots of money I wouldn't have wanted to pay people. I'd hate to feel my son was just a "job" and people were only with him because of some financial reward at the end.
Making the initial move was extremely difficult because I've never asked anyone to look after my son, even family, so to expect relative strangers to do so seemed unlikely. However, there's a saying, "Your actions create your destiny" and since, in this case, it was my son's destiny at stake, I had to lose my inhibitions.
I had to think of the future, as I won't always be around to look after and protect him. My son couldn't personally ask for help, so I just approached people I knew and who knew Jodi quite well, and had expressed an interest in him. I asked if they would consider spending time with him, but was careful not to put them in a position where they couldn't refuse. Thankfully everyone said, "Yes", usually followed by "I thought you'd never ask".
It's very common for parents of people with disabilities not to ask for help, and oddly enough, there are many people around who are willing to help others but don't know how.
If parents ask for assistance they often fear people will think them weak and unable to cope. Also they fear rejection. People willing to help often don't offer assistance because they don't want to be seen as interfering, and also fear rejection. It's a strange world and we could learn a lot from our autistic companions who always tell it as it is.
However, it was clear if my son were to have the opportunities I couldn't, or wouldn't be able to give, I had to enlist some help and I'm so glad I did. It's opened up a whole new world for him - and me.
Gradually we have built up a small, but friendly and reliable, Circle of Friends. We meet every four to six weeks and decide how each of us will entertain my son for a few hours before the next meeting in a manner he will enjoy.
It's a small commitment but means so much to everyone. All the Circle members love the regular social meetings and the feel good factor of knowing a few hours of their time each month makes such a difference. I get a bit of "normality" back in my life, and the opportunity to spend quality time with the rest of my family.
Obviously the more people you can get involved in your Circle the better, as it opens up more opportunities for social inclusion, and currently we are working on a P.A.T.H. for my son. This is really the result of a brainstorming session between all the members in his Circle to decide what we think he would like to achieve in the next twelve months, and how we are going to make sure it happens.
P.A.T.H. stands for Planning an Alternative Tomorrow with Hope and we are well on the way to achieving all his goals. I know for a fact, had the Circle not become part of his life, and mine, most of them would never have happened.
I am so grateful and know others would benefit from their own Circle too. Anyone with a genuine interest in the focus person can be in the Circle. Everyone has their own special gifts and talents they can share, and they needn't be large. Even small things like just going for a walk or to the cinema with someone, reading them a story, taking them for a ride out in the car, or baking some cakes for the meetings. All these simple things can make a huge difference.
Everyone needs friends. Whose friend are you going to be?
About the author
Jean Shaw writes articles and books on autism and mercury poisoning. For more information see http://www.jeanshaw.com
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