The experience of parenting a child with disabilities has sometimes been described as “extreme parenting” in terms of both duration and intensity. When you meet a mother or father of an older child or teen with disabilities, she or he may seem distracted, tired, or even a little distant. They may seem burned-out, and may not have the energy to engage in much social interaction. And here’s why:

1. They are still dealing with temper tantrums.

Most typical children stop having those screaming/yelling fits after ages 5 or 6, but they linger on throughout adulthood with children who have disabilities. This is especially true for children who have limited verbal or other communication abilities. Often, the triggers are something new or unexpected, since most children with disabilities crave routine and predictability.

2. Life is constantly throwing them a curveball.

Just when you think you’ve figured out how to keep your child with disabilities calm, safe and happy, something new pops up, such as a child developing seizures in adolescence. This is hard for any parent, but it’s even worse for one who already feels stretched.

3. Medical professionals don’t talk to each other.

In our current healthcare insurance system, both private and public, there’s no money to pay for medical professionals such as pediatricians, specialists and speech therapists to talk to one another about the same patient, so parents end up having to fill the role of medical navigator/case manager as well.

4. Quality aides cost money.

Even if parents are able to cut through the red tape and paperwork and get government-funded services, the hourly rates are usually too low to attract and keep quality aides. Many parents end up supplementing those rates out of pocket to retain the best help for their children so they can participate in school and community settings.

5. Please ask your children to smile, not stare.

Most children who attend Jewish day schools never have the chance to meet a classmate with a severe physical disability or who “looks” very different. They therefore tend to stare when they meet a child or teen with those disabilities out in the playground or store. Please use that time as a “teachable” moment, and ask your child to smile or say “hi” if they see a child in a wheelchair or using an assistive communication device.

6. Include all of us.

Our son with physical and intellectual disabilities loves nothing better than a big party with music and dancing. When we get invited to a simchah without him, it just doesn’t feel right. If you were planning to invite other children of a similar age to ours to the simchah, please extend an invitation to him as well.

7. We are more than just parents of a child with a disability.

Although we are very focused on the health and wellbeing of our child with a disability, we are also interested in other things—from the latest new novel to what’s happening in Israel. Just as our child is much more than his or her disability, we are also much more than our roles as parents of a child with disabilities.