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Seven Things You Should Know About Parents of Children with Disabilities

Seven Things You Should Know About Parents of Children with Disabilities

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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.

Michelle K. Wolf is a parent disability advocate, blogger/writer and nonprofit consultant, and teaches grant writing. In 2005 she cofounded HaMercaz, an innovative multi-agency collaborative one-stop model that helps Jewish families raising children with special needs, with a focus on developmental disabilities.
Artwork by Sarah Kranz.
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Anonymous Canada. February 28, 2016

tired and worn out In our area we have "Restpite" to give us all a break?(for our loved handicap child) at certain intervals..a place of relief, rest and recuperation of our strength? A reputed place of kind re-guards with a good reputation by public report.Yes,we admit for those of such disabilities it does take time to adjust both the child and parent but it has it's rewards. Once they are settled and adjusted. Shalom. Reply

Chaya Hurwitz, Jerusalem Jerusalem via chabadofbaka.com February 19, 2016

Disabilities are not catching !
Show, by example, to your children that you stop and say "hi:, a brief comment, "it's a
beautiful day, isn't it" to someone in a wheelchair. And at a joyous occasion, "What a great simcha", etc.. You don't have to be profound, just caring.
And to the parents/caretaker, say "it's so nice to see (name, or your child) here, and give them all a genuine huge smile.
Who knows? Maybe that very helige neshama, holy soul, will intercede for you in hashamayim. Reply

Anonymous La Porte, TX via jbayarea.org February 18, 2016

thank you for the support Chabad has been one of the few places that welcomed me and my son without question about different behaviors or some of the seemingly strange things I need to do to get him to calm down at times. (He has autism) I even met another Special Needs Mom at a kids activity. They are so kind and accepting. I can't thank them enough for letting me give my son a Jewish education Reply

Sondra Eisenpress February 17, 2016

My son is 58 years old. He is bipolar and was born with many disabilities. You would never know from looking at him or talking to him that he is disabled. However, if something in his life suddenly changes (no car service to take him to therapy because of the weather, a sudden change in plans, etc.) he gets extremely upset and often out of control. His getting older did not lessen his symptoms, actions and/or reactions. He now lives in assisted living because we are getting to old (we are in our 80's) to take care of all his needs and we must prepare for his future when we are longer here. I must add that he is a wonderful caring son who has had the misfortune to be disabled. Reply

Joyce Oxfeld Philadelphia February 17, 2016

Thank you for this post. From all the disabled, in any way , that want to be part of the Jewish community, when they are ready to understand what means or not. Being an outsider and in therapy or medication , puts you in the mercy of human , often gentile , or unsympathetic Doctors and practitioners all through one's life. And your parents don't live forever Reply

Lisa Providence, RI February 17, 2016

Children With Disabilities My parents weren't equipped to deal with my Asperger's Syndrome, but my mother was willing and able to try to make sense out of it before she passed away.

As for my father, he neither "liked" nor accepted my condition, and I never spoke to him again after he told me that.

I only attended private schools and summer camps, and not ALL the authority figures could handle my condition.

My grandmother could have had a milder case of Asperger's Syndrome herself, since she was one of the very few people who could understand that I wasn't well. I'll always be thankful for that! Reply

Elisheba Flor USA February 16, 2016

Thank you for this article. B'H Reply

Dorothy R. Bienen Wellington, Fla February 16, 2016

Sooooooo important!!! Thank you so much for your important information!!!! It is so well laid out....and full of important facts all family, friends and neighbors need to know about every child!

I am printing out my own copy and passing it along to many!

With Gratitude and abundant thanks for such great information! DRB Reply

Anonymous February 16, 2016

7 things you should know about parents of children with disabilities 8. Sometimes the the random acts of strangers can make a difference.
I was walking across a field toward a car-park with my son who has autism, and he suddenly started to have a tantrum , refusing to move. He is stronger and taller than I am, so for a moment I despaired wondering if we'll make it to the car. There was about 100 meter to go. To me it looked like the Great wall of China.
Out of the blue a teenager who was sitting in his car turned on his radio. The faint sound drew my son's attention for some reason, and he stood up , began walking back to the car-park with me calmly as if nothing had happened! I was so grateful to that teenager who probably does not know till this day that he had helped me and my son. Reply

Anonymous February 15, 2016

Multiple issues with multiple kids This is great. You covered a lot. My children are not as bad as some yet I am struggling some days with their struggles. Never qualified for financial help as they just have learning disabilities. But I was always thrown a curve ball and felt bad that some people couldn't handle my kids who seem less smart. It is sometimes extremely difficult to teach them to behave. They don't reason like others.
On top of it all, they are beyond stubborn and always think they are right an d mom and dad aren't. So they have rotten personalities I'm told. I used to be relaxed, not with these kids. So you don't know what someone has.But you do know it could always be so much worse. Moms get blamed too. That always feel nice. Not. Reply