Parents of Children with Special Needs: How to Tame the 'Worry Reflex'

A mom to an autistic 7-year-old reflects on her child's day in the spotlight, and the accompanying anxiety that can sometimes seem ever-present. Together with experts in the field, she offers advice to parents on how to tame their own 'worry reflex.'

Brooks says he's in an after-school concert at the Y on Wednesday?" My husband posed this question late one Monday night, and neither of us could say for sure whether this event was in the myriad of paperwork that comes home with our kindergartner every day. We both work full-time, and it's not unheard of for things like this to fall through the cracks. Good news: It was only Monday. My husband would call the Y on Tuesday for the details, and we'd both rearrange and e-mail our ways into early work departures on Wednesday.

Since rush hour was kind to me on the day of the concert, I was able to arrive a bit early, just as parents were starting to fill up the chairs in the gym. It wasn't until that moment that I realized I should have talked to Brooks about how things were going to be different today. We weren't going to meet him in the front lobby like we usually do - we'd only see him after the concert.

And then the panic kicked in. Brooks wasn't sitting on the floor with the other after-school kids. Was that where he was supposed to be? I said "Hi" to the supervisors; they were all smiling, so perhaps everything was okay? But then the concert started and it got loud - the kind of loud that Brooks, who has autism, can't tolerate.

"Let me hear you. Are you having fun?" said a young counselor on the stage. "YESSSS!" screeched all the kids. I just knew that Brooks was somewhere off-stage covering his ears and crying.

But then, as I sat there trying to calm my palpitating heart, Brooks made his entrance on stage with the rest of his group. He was nervous, but appropriately nervous, and also excited. When his eyes found me in the audience, he waved. Then he sang and danced away his time in the spotlight.

That's right - on this noisy stage with wall-to-wall kids, my son held his own.

I often wonder if I will ever find a way to turn off my "autism parent" instincts. Or are these specialized reflexes that have been finely honed over many years for the specific purpose of saving my son's life simply a permanent part of who I am?

Ultimately, I will take my cues from Brooks. When he made his way to us after the finale with his beaming smile, one of the first things he said was: "Can we go home now?" He didn't say it with any sort of desperation; more as an acknowledgement that he was ready for this really fun, but also challenging, day to be done.

So I wasn't completely off-base in my thinking that this was all difficult for him. But not impossible. Not anymore.

Taming the Anxiety

Your worry about your special needs child will never subside entirely, but our experts offer advice on how to manage it.

Research by Nicole Schreiber

Sarah Birnbaum, special education advisor at NY Special Needs Support (www.nyspecialneeds.com), is herself a mom to a special needs child. "It took me about five years before I felt at all comfortable with this person I had to become in order to care for my child," she says. "And I have a lot of clients who are in the same boat."

She and Debra Bardavid, LCSW, agree that even parents of typical children never stop worrying about them. When a child has special needs, "the most pervasive worry is, 'What will happen to my child when I can't take care of him and he still can't take care of himself?' " says Bardavid, who is director of family support services at Birch Family Services in Manhattan.

These feelings resurface in different ways whenever you see your child miss a key developmental milestone - like not learning to walk quickly, not being able to ride a bike, not graduating from school on time.

Learning how to deal with the worry ultimately helps both the parents and the child. Here, some of their expert tips for managing:

Surrender responsibility sometimes. In an instance where a child is performing a school play, for example, the teacher is in control. "The parent's job is to stay in the audience, smile, and be proud, and the teacher's job is to remain on stage, create a positive atmosphere, and help the children be successful," says Bardavid.

Follow your child's cues. Is she having a good time? "Even though you may not be having a good time, it is all about how your child is doing," says Birnbaum.

Join a support group. Perhaps the most common advice you'll hear, but for good reason. "Other parents are wonderfully resourceful," says Bardavid. "They teach each other techniques in managing kids, and learn about places to go that are okay for children with disabilities." And it helps them understand that most of their feelings are typical-and they are not alone. Birnbaum considers finding this peer group to be "the most important thing in getting to the place where things roll off you as a parent."

Stop fighting reality. A lot of the stress and pain will stop when you are accepting. This doesn't mean giving up on your child, says Birnbaum: "It means to meet them where they are and help them maximize their own potential, find their own gifts, and be the best person they can be."

Express yourself. "Find a safe place where you can say your darkest feelings - and be able to brag about things no typical parent would consider a brag," suggests Birnbaum. Whether it's with one other individual or in a group setting, being able to express such thoughts safely is essential.

Have a public dialogue at the ready. The more open you are about your child's diagnosis, the easier it is to interact with inquiring strangers. If you can easily say, "My child has ______ and it makes social interactions difficult for him, and it is something that we are working on," then you may avoid judging looks (or, as Birnbaum refers to them, the "hairy eyeballs"): "Whether or not we see the hairy eyeballs," she says, "we always think we see the hairy eyeballs. It often has to do with our own pain, rage, shame, fear, and anxiety about having a child who is different from the norm. So sometimes our children are not doing anything particularly out of the ordinary, but our sensitivity is heightened to the smallest things because we are afraid of what could happen. So be ready to have a 'line of talk' to use in public."

Bardavid echoes this: "Most people looking are just curious, but if you have something prepared to say to them, and say it with confidence, they will more often than not be sympathetic."

Prepare for contingencies. Lots of anxiety comes from never knowing what might happen, so being prepared can calm the nerves.

Know where not to go. "You don't have to take your children everywhere, even with typical children," says Bardavid. "If someplace is not good for your child, remove him from the situation and don't try it again."

Open up. Talk therapy can be of great value, and there are therapists who specialize in special needs. "You need to find people who know what it's like to be inside the shoes of a special needs parent, either because they are one, or they work with such kids, or they work with so many parents like that," says Birnbaum. "The JCC and YAI are great resources for this, as they have excellent support groups." Visit www.yai.org or call your local JCC for more information.

Find joy in your child's achievements, small or large.

Smile and project confidence. "It's hard to expect us as parents to be confident for our kids in this way when all we really want to do is sob and say that you wish they were like a typical child," says Birnbaum. "But we have to work on our exteriors for them, so that we can help them by showing that this stuff is not a big deal." As Bardavid points out, the child probably doesn't even know he made a mistake - "he's just looking to see if his parent is smiling. And all children need to learn to take things in stride and make mistakes."

Help your child label her emotions. A child with special needs may be upset because she does not know how to express her feelings. Give her words or pictures to communicate them. "Giving your child a way to label the feeling back to you lessens her need to act out," says Bardavid.

Learn to move on. "A child will move from situation to situation," says Bardavid. "They move on, while we hold on to it and think they are so devastated, but they aren't. Kids move on more easily than we do."

Final words of wisdom? "Make accommodations with the kid you have, not the kid you wanted," says Birnbaum. "Once you can let go of your old dreams of potential children, you will be able to allow your anxiety to get better over time."

And Bardavid stresses: "It's okay to worry! It's normal even for typical children. It's lifelong. It's what being a parent is all about."

Also see: A Guide to Planning Ahead for Your Child with Special Needs: Services and Care Options After High School