Support Groups and How They Can Help
Back issue NATHHAN NEWS Fall 1993
Support groups can be a fun place to meet other families. Friendships are formed and the sharing of information is a good way to get motivated in another direction if we are stumped. Support group leaders of homeschooling groups (not necessarily for families who are schooling with disabilities) can be at a loss on how to make families with disabilities feel welcome. What we would like to do is to share with you suggestions on how we as a family (the Bushnells) would be made to feel welcome if we came to join your group. If you have other suggestions we would love to hear them and so would everyone else.
1. It is often with much regret that we feel like a showcase. Realizing that folks are curious and there will always be those who cannot contain themselves any longer and ask lots of questions, even if we have never met before! We enjoy sharing with others about our family at the right time and place. In fact we feel communication is vital if we are to be together with a group of people for a period of time so they can understand where we are coming from, and our limitations. What is difficult however, are those times I am really needing support and instead I am swamped with very interested, not so caring people who are merely satisfying their curiously. (We can tell the difference.) So... in a nutshell...We want to be one of the crowd as much as possible. Please do not go out of the way to single us out or draw attention to us anymore than you would normally to a new homeschooling family. Treat us normally.
2. It is true that God has blessed us with our special needs children, but it is most disheartening to hear people say that we are "extra-special in God's sight" because we were given the responsibility of raising a disabled youngster. If only you could have seen us at breakfast this morning crowing at the children! Or sacked out on the couch because our emotional strength is gone. This is no glorious task. We are totally human. The Lord does indeed give us strength..but usually no sooner than we need it! We are ordinary folk, trying to be obedient in the task God has set before us. No more...no less.
3. Sharing resources is a real help to us. It makes us feel relieved to know others are keeping their eyes out for material to help us. We appreciate it most when we get the resource and the folks let us review it without asking later if we are using it or not. Well-meaning friends have "found the answer" for us and been disappointed when we didn't follow through with their suggestion. (Least we felt uncomfortable telling them we didn't feel it was working or appropriate.) However we still appreciate their input! Isn't that what friends are for?
4. Include us in field trips. Let us know when and where. If we can make it...we'll go. Do not center your field trip around our physical needs because if our child is sick and we are unable to go. We'd feel really embarrassed. Wheelchair ramp accesses are fine, but extra concessions are not good for our children. We'll go along with you when we can.
5. Be understanding when we are facing problems with our children such as emotional excitability (over stimulation), unreasonable fear or other. We want so much to be included. Your understanding and good humor goes a very long way in making us feel more normal in the midst of some embarrassing situations.
6. My children love to make new friends. It is such an important part of joining with a group! But often time we find ourselves in uncomfortable situations having to do with well meaning parents. It is best to ask us before picking-up a child or giving cuddles. For instance.... our daughter, who is blind, Sheela, when she was 4 1/2 seems to draw the "sugar" out of folks. She got confused when she was swept off her feet and into a stranger's arms. Sheela looked like she was 2, but was in fact a 4 year old girl learning socially appropriate social skills. It is frustrating for Sheela and us to feel that because of her disability folks have a license to be too friendly. We appreciate it when folks ask before they act on their emotion.
Prepare your children so that they will feel comfortable around our children. We have found that all it takes is a short explanation and a question / answer time for them to feel ready to mingle and include our child with a disability. Don't force your children if they are uncomfortable. By experience we know that after a while it will be O.K.
As an end note: When our family was faced with the emotionally exhausting time when our daughter Tally passed away, we noticed that some folks ignored us. Later, after the communication time was open again, we found that others felt at a loss as to what to say. Many said nothing at all. That hurt! It is so important to share at least a smile of encouragement. Are you glad I came? Or am I a nuisance? We may not always be on the upwards, joyful side of life, but it feels good to be around real people letting us know they are not afraid of us or our differently made children.