Building a Support Network

I’ve never felt more alone than when I found out that my children had disabilities.  After all, I was surrounded by people with normal kids and seeing that their path wasn’t our path didn’t take rocket science. They were going to pee wee games and dance classes while I was navigating special education services and weighing endless therapies—could we afford it? Did our insurance cover it? Would it even help?  Other parents complained that their kids never shut up, and mine?  Mine couldn’t tell me what they wanted for dinner.  Nothing was simple for us.  My children’s behaviors and the sensory issues made birthday parties and grocery shopping and eating out very difficult for us, so we stopped doing them and we stayed home. Eventually, the invites stopped coming and the world moved on without us.

When your child is different, your life is different, that’s just how it is.  But we rarely acknowledge just how different our lives are, much less what that difference does to us as parents, spouses, friends, and coworkers.  Our family and social connections fray as we tire of explaining and planning.  Our careers and professional relationships crumble as we struggle to fit our jobs around caring for our children, many times abandoning our careers altogether. 

We raise our children in isolation, not because we want to, but because dipping our toes into the mainstream takes more energy and planning and determination than we have left on most days.  We shut our eyes and think, “Something’s got to give!” and too often, what gives is our support network and our own self-care.  

You may be thinking that you don’t have a support network because there’s nobody who understands what you’re going through, nobody who “gets it,” but a support network isn’t about people who are exactly like you.   Support networks can be family, friends, neighbors, and coworkers. They can also be paid professionals, like therapists and teachers and case managers.  Regardless of the combination, they are the people you can rely on to help fill the gaps between your life and the rest of the world.  They are the people who give you time to breathe and think. 

Maybe you think you don’t need a support network because you’re used to doing all the jobs.  Unfortunately, that means you also have all the stress and all the worry, all of which takes a toll on our physical and mental health.  We are social creatures.  We need to share what concerns us.  We need to talk and we need to be heard.   Everybody needs to be part something, so why not make that “something” a group of people who will be there for you in both celebrations and crises?

Support networks sound like a lot of work, don’t they?  They sound like one more thing that you need to figure out.  That’s because they’re both of those things, especially at first.  But that doesn’t mean they’re not worth it and it certainly doesn’t mean that you can’t come up with one. 

It’s easy to look around and assume that every other person in the world walked into a great support network as easily as walking into a room, but that’s not true.  Building a support network is a conscious thing, one that requires time and attention and an awful lot of wiggle room.

 So how do we begin?

We begin by letting people into our lives, no matter how different or messy or chaotic they are.  Accept help from family and friends,  and be honest about your different life and your family’s struggles.  People get used to things so easily, and the more open you are, the more time these folks spend with your family, the less different your family will seem to them.  Sharing your normal makes things more normal for everybody involved.  Accept help from family and friends.  Sure, you may need to show them and tell them what you need from them, but most people who care about your family will be happy to learn. 

Do you even know what you need?  Maybe not, and that’s okay.  Let me get you started: the first thing that you need is other people who can care for your children, all of your children.  Certainly, there will be details that you’ll need to write down, and things that you’ll need to show and teach, but it is vitally important that you have folks who can fill in for you, whether it’s in an emergency, or it’s so you can take a break.  Regular breaks are an important part of self-care, and make no mistake, self-care is what lets you continue to care for the people who need you. 

Who are these folks?  Well, that depends.  Sometimes they’re relatives and friends, but it’s a good idea to be a bit more creative than that, even if it’s just so your child gets used to having other people involved in their day to day life.  Remember, your child needs relationships, too.  Of course, there are professional respite workers available, but you might also want to reach out to college students with an interest in special education, and you can also reach out to students studying health care, speech therapy or occupational therapy.   

At first, you might not know what to do on your breaks, but that doesn’t mean you don’t need them.  It’s okay to start small.  Meet a friend for coffee.  Attend a book club or a support group.  Work your way up to taking a class or volunteering on a regular basis.  As long as it’s an enjoyable activity that involves other people, you’re doing a great job with your breaks.  Remember those parents on that different path?  Take this opportunity to reconnect with them, if you like.  This can be as simple as sending a text or an email setting up a time to meet and talk, or get your families together for dinner.  You an also use this time to check in on relatives and let them know you’re thinking of them, even if they’re not nearby. 

Is it easier to be isolated and alone?  You bet it is.  Is it good for you or your family?  Nope, not a bit.  Can you do it forever?  Not a chance. 

It sounds like a lot because it is a lot.  And yes, a support network is “one more thing” to think about, but it’s a fundamentally important “one more thing.”  Because the energy and care that that you and your family get from having that support network are well worth the time and care that you’ll put into developing and maintaining that support network.

Sign up and check out our Building a Support Network worksheet in the Resource Section of the Parent Portal.