When your child has serious disabilities, it’s important to have friends and family you can rely on for backup caretaking, resource recommendations, and comfort when reality gets overwhelming. However, you can get into trouble assuming that people will always be available when you need them.
The last thing you need is a scenario like the following:
- You and your child are returning from morning errands when your car engine turns balky.
- You call your mechanic and find they can only fit you in today if you bring the car immediately.
- You know you’ll need the car that evening—and you know that your child, who has autism, won’t be able to tolerate waiting with you at the auto-repair shop.
- You tell your child, “Don’t worry, Marina [your best friend] will be glad to stay with you while I get the car fixed.”
- You call Marina, and find that she’s nursing a virus, hosting in-laws, or getting ready to leave for a prepaid luncheon.
- Your child, already counting on what you just promised, has a meltdown.
- You and Marina, each blaming the other for being unreasonable, don’t speak for weeks afterward.
Everyone needs people they can count on. Just verify, well in advance, that others know what you count on them for.
Organizing a True Personal Support Network
Where your family is more likely than average to need help, a formalized approach is often necessary. Important as it is to connect with families in similar situations (and everything from alcoholism to Tourette syndrome has organized support groups these days), there’s more to life with a disability than talking about the struggles. You also need a support network with diverse members who are personally close to your family.
Organizing your closest friends, relatives, and advocates into a true Personal Support Network is easier than you might think. (And if you don’t care for organizing or hosting, professional facilitators are available: see the Texas Parent to Parent website for one resource.)
The basic steps are:
- Make a list of three or more people who know your child personally and understand his or her needs. Cross off anyone you’ve found less than consistently reliable and understanding, or who doesn’t get along with someone else you definitely need in the network.
- Make a second list covering every aspect of life where your family needs support. Include future considerations such as your child’s career planning and adult living arrangements. Include “social” and “just for fun” categories as well: who will attend your children’s birthday parties, take them to picnics, and help them enjoy a life that focuses on possibilities rather than limitations?
- Create a “meeting agenda” based on the needs list.
- Design official invitations (let your child help with wording and/or art) for a gathering to discuss who can commit to doing what—including being on call for unexpected emergencies. Don’t, however, focus exclusively on “we need your help”: emphasize what everyone will gain from a formal support-network arrangement. (For example: getting to know each other better; seeing your family more often in non-stressful circumstances; working out ways for your child/family to return favors by helping with others’ needs.)
- At the meeting, create a detailed written description of who will do what when. Distribute copies to every member. Go over it thoroughly as a group, making sure everyone understands their part and that all questions are answered.
- Designate someone to coordinate communications for future questions and requests.
Networks Grow and Change, Too
Expect that there will be future concerns—including people having to reduce their commitments or leave the support network entirely. No matter how unhappy you are to hear someone plead new outside responsibilities, avoid guilt trips at all costs: they win no lasting support and are never in anyone’s best interests.
To minimize difficulties related to changes in the network:
- If your child takes change particularly hard, include “help dealing with the unexpected” among your support-network needs.
- In the written agreement, include provisions for advance notice should anyone need to change their involvement.
- Schedule follow-up group meetings every few months, including goal evaluations and plans to handle upcoming needs.
- Think long-term. Include people from your child’s own generation—and eventually the next generation down—to ensure the support network endures throughout your child’s life. Nurture a multigenerational feeling from the beginning: send membership invitations to whole families, not just the adults.
Closing Note: If You Have to Ask Someone to Leave
Hopefully you will never face the situation of having a child abused by someone you thought was a trustworthy friend—but it can happen to any family, regardless of demographic or the presence or absence of disabilities. It can even happen in organized personal support networks. If your child seems afraid of or unwilling to be with any network member, pay attention!
Whether the reason is that serious, or stops at inability to do an agreed-upon job, you may someday face the unpleasant task of telling someone they no longer fit into your network. If a criminal-level offense is involved, by all means report it to the proper authorities. Or in the case of a lesser problem but a bad attitude—someone stubbornly resisting evidence that their participation isn’t working out—you may have to call on other members to intervene.
But if the problem is on a lower level, talk privately with the person involved. Often they’ll already know they aren’t up to the job, but be ashamed to “quit”; if that’s the case, offer them the chance to explain their reasons to the group and say a formal good-bye, with everyone’s thanks and good wishes. Keep things on all-around friendly terms whenever possible: besides wanting to remain personally close, you’ll often find that things change again and you can welcome your friend back into your personal support network.