Parenting is hard. Everyone that has children or works with them knows that this is true. Parenting when you have a disability is harder by far. Like parenting… squared. But instead of real support, many disabled people who become parents or are thinking of becoming parents face a lot of reactions from the non-disabled. It usually arrives in one of two packages. First, the more positive but less helpful responses.
People see disabled parents diapering a child with one hand or with both feet, or navigating the playground with a cane and remark on how amazing it all is. They are either pitied for their struggle or praised for their bravery. If you have a disability, what you could really use is to be seen as an equal. And maybe the chance to share how to get your child to wait for more than a nanosecond for juice. Real support and real camaraderie, the kind that other parents give and get on the playground.
Of course, there is another packaged form. These are those difficult responses that can and do happen. Parents with disabilities may be treated like criminals (how dare you subject a child to your problems?) or idiots (“You will never be able to handle the challenges”). I suppose pity and random praise could be better than these responses, but how about another reaction? Support.
Sadly, one of the groups that should be actively supporting disabled parents often drops the ball. Parenting issues aren’t always on the radar of doctors and therapists. In fact, the act that gets you into the business of parenting may not even be fully acknowledged by professionals. Yes, that one. Accepting that disabled people are sexual and often (or mostly) capable of having children is so rarely mentioned in training and treatment protocols that it is a true crime. When people with disabilities do have children, receiving equitable medical care and respectful treatment as parents isn’t a given. Don’t believe me? Think about how many accessible GYN tables you have ever seen, or how people with disabilities might struggle to attend the soccer game to cheer their child on. Simple things that most of us take for granted.
I think that occupational therapists have much to offer parents with disabilities. We are known for being the MacGyvers of rehab. We love to solve real-life problems and use our wide range of skills to help clients achieve their goals. Supporting people with disabilities to be the best parents they can be could be as simple as teaching a parent an easier way to hold or carry their child. OTs are rarely consulted for this, but helping clients identify the positions, adaptations and adjustments needed to make that baby in the first place is actually in the OT skill set. All discussed with respect and sensitivity, not pity.
OT support could be as complicated as redesigning a kitchen for safe and easy meal preparation. Feeding your child is a wonderful way to participate as a parent. Or as subtle as identifying how visual and auditory stimuli in the home set off sensory-based anxiety and agitation in a parent. Being as calm as you can be is important when you are raising children. A few sessions with a good occupational therapist can result in less stress, less pain, more skill and more confidence for all involved.
Occupational therapy isn’t always thought of as an essential service for adults with disabilities after the initial injury (think spinal cord injury rehab) or for people with more common issues such as fibromyalgia or back pain. Perhaps that could change. Parenting is hard. It is harder when you don’t get the support you need.