Due to family history, I have a child at higher risk of certain disabilities: mood disorders, borderline personality disorder, ADHD, and autism spectrum conditions. Even if I don’t have a child who is disabled enough by these conditions to qualify for a diagnosis, they may have subclinical symptoms.
So there’s sort of an interesting question, which is how– as a parent– you deal with knowing that your child is at elevated risk of having one of these conditions.
My philosophy as a prospective parent has been affected by the principles of universal design. Basically, it is much easier and less expensive to design things ahead of time with the needs of disabled people in mind, rather than to retrofit a building or an object which was designed without thinking about disabled people. Think about architecture. If you’re planning for disabled people ahead of time, you can incorporate a ramp into the original blueprint and build it along with everything else. If you wait until the first person with a wheelchair wants to use your building (or until regulations require you to let them in), then retrofitting is probably going to be really expensive, result in an ugly and awkwardly positioned ramp, and require you to close the building for six months for construction.
I think there’s a similar thing for parenting disabled children. Parents of disabled children often grieve the loss of their expectations and hopes for their child. In some tragic cases, the parents become bitter and angry at their children for not being the children they wanted, in some cases going so far as to accuse the children of ruining their lives. Discovering a child is disabled involves a major reworking of a number of aspects of family life, whether that means setting aside time for physical therapy with your child each day, learning techniques to manage your emotionally or developmentally disabled child’s meltdowns, searching for wheelchair dance lessons, or simply shuttling your child from appointment to appointment.
There’s also a cost for the children. Children with many disabilities– particularly invisible disabilities– may go undiagnosed for years, in which time their needs are not accommodated, they aren’t learning the skills they need to succeed as disabled people, and they may acquire toxic shame and anxiety that follows them for the rest of their lives. In some cases, a lifelong disability may not be diagnosed until the person is an adult, in which case they’ve gone through their entire childhood without appropriate accommodations or support.
Universal design for parenting doesn’t mean assuming that all children are disabled: of course, even in families with a history of disability, many children will be abled. But it does mean parenting in a way that would be good parenting whether the child is disabled or not.
For instance, I’ve mentally prepared myself for the prospect that my child is disabled, including forms of disability I might otherwise have a particularly hard time dealing with (such as intellectual disability, the child being nonverbal, or violent meltdowns). I’ve talked to my husband about disability to make sure we share the same values, the same way I would talk about other parenting issues like discipline or education or screen time. My children are at risk of childhood-onset depression, so I’m taking the perhaps unusual step of proactively taking them to psychological checkups. Hopefully, they will feel comfortable talking about their symptoms with a therapist, even if they don’t want to bring them up with a doctor. (Of course, I am not going to look at my children’s therapy records; since children have no legal right to confidentiality, it’s particularly important for parents to be conscientious about allowing them their privacy.)
There are also some accommodations I can implement without a disability. I can make a particular effort to validate my children’s feelings, because invalidating environments tend to exacerbate symptoms in children with a genetic predisposition to borderline personality disorder. I can proactively teach emotional regulation skills. If it seems like my child might benefit from social stories or visual schedules, commonly used to help autistic children, I can use them. I can purchase toys that help develop fine and gross motor skills, which autistic children are particularly likely to have trouble with. I can have a daily routine, which helps children with ADHD and autism. I can avoid shaming my child for forgetting or losing things, which leads to the comorbid anxiety that causes so many problems for adults with ADHD. I can try giving children clear instructions (“put your toys on the shelf,” not “clean your room”), which helps children with ADHD remember things.
Naturally, I haven’t done universal design for parenting for every conceivable disability. For instance, there is a step outside my front door, even though this would be inaccessible for a child who uses a wheelchair. I haven’t learned ASL, even though Deaf children with access to sign language have higher academic performance, and have no intentions of raising my children bilingually in sign and English. That’s because both of those would be fairly costly for me– I’d have to move, I’d have to learn a new language– and I have no reason to expect my children are any more likely than average to be Deaf or use wheelchairs. But I think if your child has an above-average chance of having certain disabilities, it’s worth it to be prepared.