Parenting a child with a disability

Some things that parents of disabled children know that might not be so obvious to others.
Toddler learning to walk holding parent’s hand

I spend a lot of time at various disability/diversity/design/tech/HR inclusion events repeating my story about my career shift from tech law to digital accessibility that was spurred not by my own disabilities but by my daughter’s congenital hearing loss.

Here are some of my thoughts about what my now 30-year journey in this role has been like.

Things parents with a child with a disability must do differently

Parenting a child with a disability requires that you:

  1. Work against systems that continually exhibit behavior, indicating that your child is worth less than a child without a disability. When my daughter was 7, I was told by her IEP team that it was unreasonable to expect her to go to college. She’s about to finish the last year of an audiology Ph.D. program. Take that, Ms. Kremers.
  2. Fear for your child’s safety since so many police incidents involve people with disabilities. Police interaction with people with hearing lossautism, and in the midst of mental health crises ends in tragedy more often than the public might think. You are sixteen times more likely to be killed by law enforcement if you have a mental health disorder. Some states are thinking about issuing people with autism ID cards to be produced at traffic stops. Yes, disabled people drive.
  3. Fight discrimination in child care, extracurricular activities, and school settings. These three groups, in particular, are absolutely not interested in making sure disabled children have equal access because of the perceived “inconvenience.” My deaf daughter was turned down for admission to a private school despite having similar test scores to her older sister, who could hear.

They wanted the smart, hearing older sister.

They just didn’t want her smart, deaf sibling.

They were also completely disinterested in collaboratively learning how to become a more inclusive educational setting. Needless to say, they got neither child.

4. Repeatedly make heart-wrenching medical decisions that cause your child pain, hopefully for long-term gain. The source of my daughter’s hearing loss was a complicated and, of course rare, syndrome that also impacted her kidneys, heart, spine, vision, teeth, and jaw. Decision fatigue, the break up of my marriage, lack of time, and stretched finances combined like a tsunami, limiting which of her issues got prioritized. If it wasn’t going to kill her, it went to the bottom of the list. Unfortunately, that meant we never sought treatment for sensory integration disorder. No one told me it would be too late when she became an adult. If I had known that, I would like to think I could have dug deep and figured out how to squeeze in one more set of appointments. However, I’m not sure that knowing that fact would have changed things, so I blame myself for not doing more.

5. Worry about your disabled child’s future, especially the part of the future where you are no longer around. That requires teaching disabled children to advocate for themselves, something that I know from personal experience is challenging. This is especially true in the teenage years, where standing out is the absolute LAST thing most teenagers want to do. My biggest source of pride isn’t my daughter getting her Ph.D. It was when she single-handedly built a plan to tell her post-grad communications program to eff-off when they wouldn’t provide her consistent captioning. I only heard about it after the fact.

6. Being “always on,” waiting for the next melt-down or medical emergency. Social events and trips required planning for every potential outcome. We never were able to make that trip to China. There were always treatments, therapies, and surgeries that had to be done over the summer. There was also always concern about being far away from medical care who understood her situation if something went wrong. Before she received her first set of hearing aids, more often than not, she ended up under the table at restaurants and at large gatherings with a jacket over her head. That was before we learned about recruitment and SID. I felt terribly guilty in retrospect for torturing the poor child by taking her to things that overwhelmed her auditory system.

6. If you are in the US, spending dozens if not hundreds of hours every year slogging through insurance systems that profit from denying your disabled child medical care. One year her medical bills exceeded $250,000. The amount of job and financial stress before Obamacare passed was unreal. Neither of us was insurable in an era where people could be excluded from insurance for any reason at all. I could never change a job without doing an exhaustive review of the benefits for both of us.

7. If your disabled child has siblings, trying to carve out every opportunity you have to make them not feel left out.

8. Last but not least, if you are a parent with a disability, you are doing items 1 through 7 while dealing with the impact in time, money, and energy of your disability. If your disability is the same as your child’s, that can occasionally be somewhat helpful. Many neurodiverse diagnoses and certain types of hearing, vision, and mobility disabilities can be genetic. However, having the same disability as your child can also trigger guilt and self-blaming. It is also possible (as it was in my case) that your disability and your child’s disability are entirely different. In either case, parenting a child with a disability when you have a disability can be even more exhausting.

How can allies and friends help?

Let’s say you know someone who is parenting a disabled child, and you want to be an ally. Here are some things that you can offer to do to show your support:

  1. Feed people. Parents with disabled children spend so much time managing their disabled children’s complicated lives that frequently they feel guilty about not feeding their family well. In my case, this manifested as my kids getting store-bought BBQ pork buns and a banana, rather than money to buy lunch or fancy packed lunches. Even just saying, “Hey, I am going to the store, do you want me to get anything for you?” can save a parent of a child with a disability a significant amount of time, at only a small incremental time cost to you.
  2. Lend a non-judgmental ear. Parents with disabled children need to vent about the latest discrimination or frustration they or their child has experienced. Simultaneously, they don’t always have the money or the time for a therapist. Be the psychologically safe person that provides the release valve.
  3. Offer to provide childcare. There are plenty of events in the lives of parents of disabled children that aren’t appropriate to take children to. Still, sometimes the parents have limited options because it is hard to get a babysitter for a disabled child.
  4. Include the child(ren) in your events. Going to the park, a movie, a petting zoo? Having a birthday party or BBQ? Offer to take the children with you.
  5. Help the parents fundraise. There are so many things that children with disabilities need that aren’t paid for by the government or insurance. Parents of children with disabilities are frequently forced to beg to get the $$ they need for things as simple as a power wheelchair or hearing aid to provide equal access to education. Share the gofundme’s. Help with fundraising events. Assist them in researching grants — my favorite is United Healthcare Children’s Foundation.
  6. Focus on the good. I’m not talking about toxic positivity here, nor am I suggesting that you shower a child with a disability with inspiration porn. Instead, celebrate the small victories when they happen.

Within the past couple of years, the US federal government decided that intermittent FMLA (Family and Medical Leave Act) leave can be used for special education meetings. Don’t incur an expensive, public legal situation by waiting for the EEOC to tell you that you (or your HR department) that your organization has insufficient knowledge around how these laws should have been applied. If you are the manager of a parent with a child with disabilities, make sure you cut them some slack on school, medical and therapy appointments. In the era of “the great resignation,” this is the type of benefit that parents of children with disabilities value as “priceless.”