By Terri Mauro
“Please let me know if there’s anything I can do.”
If you’ve met a family with special needs, you may have said those words out of a sense of appropriateness, without a clue as to what exactly you could or would do. And if you’re a parent hearing those words from somebody well-meaning, you may bristle at the general uselessness of the offer, or wonder what on earth you could ever ask someone to do in your complicated, specialized, not-for-the-fainthearted kind of life. The truth is, though, that there are plenty of things those with good and thoughtful intentions can do for special families, to lighten the load and widen the way. Consider these ten possibilities — they won’t all work for everybody, but they provide an opportunity for doing something truly useful and needed. Some, you can even do without asking.
Sometimes, parents of children with special needs could really use a listening ear. Not a judging ear, not an advising ear, not an ear to record every word and keep it in mind for future conversations, but just, really, an ear attached to a warm body to sound off against. There are things it is useful to say out loud. There are things it is useful to rant about. There are things that really need to be downloaded and then deleted. Parents can say these things to themselves or the shower walls, but a human is better. If you can really just listen, just be present, not pitying or helping or correcting or aw-ing or agreeing or disagreeing but just offering grown-up companionship, yeah, that’s something you could do for the parent of a child with special needs.
2. Be a Plus-One
It’s hard for parents of kids with special needs to imagine letting other people watch their children. It’s not so much that we don’t trust the adults, although often there’s that, but we also don’t trust the kids to not present situations that will be impossible to handle. “Watching the kids” is not something to offer casually, or to be accepted casually, no matter how sincerely the offer is intended. However — an extra adult along on a family outing is an invaluable thing for parents dealing with a child’s special needs. If you want to come along to the mall and “watch the kids” while Mom darts into a store, or “watch the kid” who won’t leave the mall playground while the rest of the family gets things done, or “watch the kid” in the shopping cart out of shelf range while Dad grabs some groceries, or “watch the kids” still in the restaurant or movie theater while a parent takes the tantruming one out, that right there is the kind of kid-sitting that’s almost always welcome.
3. Talk to the Child
There’s all sorts of good reasons why people talk to the parents instead of the kids when they want to be kindly about disabilities. They may feel it’s inappropriate for a stranger to talk to a child. They may not believe this particular child will understand. They may feel they have more to offer the parent. The child may be rolling around on the floor screaming. It happens. But a really quick way to the heart of the parent of a child with special needs — and a very concrete thing to do for that parent — is to treat that kid like a kid, not a project to be discussed. You may not get eye contact, you may get asked unexpected questions, you may or may not feel you connect, but make an effort to say hello when you see that child and smile when you see that child and give friendliness toward that child your very best shot. You may be surprised to find the kids are much more fun to talk to than their parents.
4. Be Part of the Circle
You may have heard that it takes a village to raise a child. For kids with special needs, what often helps is a series of circles of support, starting with immediate family and broadening to extended family, friends, educators, therapists, and — here’s where you come in — members of the community. Just being someone who knows this child and accepts this child and can keep an eagle eye out for this child and will be part of a wide and far-reaching safety net for this child is doing something profoundly helpful for that child’s parents. In the outer circles, you won’t be called upon to do any heavy lifting in the raising-a-child part; just being a loving and accepting and advocating part of the community is plenty.
People may be reluctant to invite kids with special needs to parties and events, and if they’re kind, they’ll say it’s because they didn’t want to put the child or parent in an awkward position, or put the child in an environment where he or she could not be successful, or force the child to endure something he or she wouldn’t be interested in or able to keep up with. If you’re tempted to make that excuse, think about whether you would ever, ever buy it if it were the reason that your child was excluded. Even if there were truth to the badness of guest/party fit, it would sting to be preemptively uninvited. So try this, if you truly want to do something for the parent of a child with special needs: let that parent make the decision, just as you do for every other child on your guest list. Invite and inform. Ask — and mean it — what it would take to accommodate that child. Most parents don’t want their kids to be unsuccessful either, but may have found ways over the years to make difficult situations tolerable. Even if ultimately the answer to the invitation is “no,” the fact that you’ve made it will mean a lot.
6. Be Inclusive
If you have a typical child, chances are you’re involved in many child-centric activities in your community, from Sunday school to Little League to scouts to informal playdates at the park. Are there kids with special needs involved in those activities? Why not? What could be done to make that different? Are there new activities that would be fun for all types of children that you could spearhead? One way to help the parent of a child with special needs is to keep him or her from always having to be the trailblazer and the agitator and the person trying to break in from the outside. Break out from the inside. Look at ways to start inclusive sports programs, and give them a try. Read up on making your church more inclusive, and lead the committee. Move the playgroup to an accessible playground and encourage your kids to include those with disabilities. Inclusion is good for everybody, so everybody’s parents need to be in charge of it. Let that special-needs parent know you’re into it too.
7. Go to an IEP Meeting
Some parents of students with special needs have to bring professional advocates or legal help along to the meetings that determine their child’s Individualized Education Program, and obviously that’s going to be beyond your level of usefulness. But often, what a parent in those meetings needs most is a friendly face, a supportive presence, an independent witness, a second set of ears, a person who can periodically put in a good word about their child or react to inappropriate language. If you know a parent of a child with special needs who’s stressed about the special-education process, offer to go along to a meeting. Among other things, it may open your eyes to the hoops families have to jump through to get those services and the ways in which children’s education is compromised by rules and regulations and reports and results of testing. In addition to providing a real service, you may appreciate your child’s more traditional educational path more.
Parents of students with special needs often get a bad reputation for not participating in school parent-teacher organizations and activities. There are all sorts of reasons for that, ranging from scheduling challenges to the need to stay home with kids to exhaustion to just simply picking the things you can manage out of a never-ending list. Instead of judging and blaming and deciding it’s not your problem, how about stepping up and representing the interests of children with special needs on their behalf? Be that parent’s voice in those parent-organization meetings, take a special interest in those kids as a class parent, be the one who makes sure kids with disabilities are represented in yearbook pictures and award ceremonies and field days. Ask parents what they’d like to have brought up; ask special-education teachers, too. Be the one who does the legwork, and the speaking up.
It’s tempting to let a parent of a child with special needs know every time you read something about that child’s disability, like you’re going to be magically sharing the thing that turns the key and opens the door. Some parents may welcome that, but more likely, especially if the parent has been around the block a few times, this parent knows more about the child’s disability than you ever, ever will, and really doesn’t want to hear about what you saw in a magazine. Instead, if you want to do something for the parent of a child with special needs, ask the parent what you should be reading. Seek book recommendations. Ask for advice on what blogs are worth a look. Chances are, this parent has developed a long list of things he or she would love to discuss but has no one in real life who shares those interests. Learn instead of trying to teach, and you’ll likely find things that will give you unexpected new perspectives and insights.
No matter how well you mean it, “I’ll pray for you” uttered in a voice dripping with sympathy is not going to endear you to many parents of children with special needs. No one wants to feel like a project. Instead of, or in addition to, praying for that family, how about praying for guidance for yourself, in picking something off this list to make your ministry or looking for other opportunities to actively do good for families with special needs? How about praying for your community, that it finds ways to be more welcoming and accepting? Moving your focus from changing the child and the family to changing yourself is a good way to start thinking about what you can do for a parent, and for society in general.