Guide To Parenting: Disabled Adults

Disabilities come in so many forms and: levels of impairment.

For some, raising a child with a disability is but the first phase of a lifelong dedication to supporting their loved one. For others, a disabled child turning 18 is largely a milestone of independence like any other teenager entering adulthood, with little to no requirement for parental support. But for thousands of families, the reality sits somewhere between the two, begging the question; “how do we give our adult child the support they need without preventing their independence?”

The answer is not straightforward but rather nuanced and dependent on your child and the help available.

Building a daily and weekly plan

Routine is not just best practice for young children, but adults as well. Parents who are still involved with their adult child’s disability care can offer much better, stable help by being part of a broader daily plan. Again the occupational therapist will help facilitate this plan, but parents may form parts of this. There will be daily activities such as using the bathroom or eating meals, and then things that occur once a week or month such as hobbies, going to the movies, social occasions or health appointments.

The plan should be owned and dictated largely by the mobility impaired individual, with OT and parents helping to enable that plan. When you’ve got an adult capable of making their own decisions, parents need to be careful not to put their own opinions or preferences over what their son or daughter’s.

Much like we want to help our children live a life that’s not defined by their mobility impairment, our adult children equally don’t want this to prevent being an adult. Becoming an adult means different things for people, but in a lot of cases there’s some defining characteristics of an adult life:

• Having a job and/or regular commitment like study or volunteering
• Pursuing and enjoying adult relationships
• Keeping a good circle of friends
• Attending extended family events like Christmas
• Practicing a hobby and joining community groups

There’s no way to apply one set of activities to any one person. Mobility impairment is experienced differently by everyone. An OT, along with the doctor or the person’s medical team will be able to provide guidance on the balance between support and independence to help the individual in their desired activities and occupations in ways that meet their abilities. In this increasingly-accessible and inclusive age, there are more job opportunities for mobility impaired people than ever before.

And with online communities crossing over into local ones, groups of people with disabilities are regularly coming together and forming close friendships.

Our final piece of advice when it comes to helping your adult daughter or son live an adult life? Find out what is most important to the individual and then solve challenges as they arise. The OT can provide guidance on how to aid the person with mobility challenges to perform their desired occupations and activities and provide suggestions, recommendations, alternatives and resources, as needed.

Knowing when to step out of the way

It’s rare that parents get involved in their adult children’s lives with anything other than the best of intentions. We never stop caring about our children, even as they enter their 20s, 30s and so on. This is why it can be unnatural and scary to step back and allow our kids to realise their potential as adults.

Too much involvement can push our loved ones away, or prevent them from taking a leading role in their lives. This might be met with rejection or an unnecessary degree of reliance upon you as a parent when the level of impairment may not require this.

Giving our children the space to learn and grow on their own as adults creates a much more positive parent/child relationship in what we’ve seen with our Showerbuddy community families. Over time, the working relationship transfers away from the parent and onto the adult child who feels much more in control of their lifestyle.

The benefits of assistive technologies

While mobility equipment has existed in different forms for hundreds of years, there’s never been the level of technology helping our mobility impaired community as there is today. While equipment like chairs, lifts, grips and modified transport is useful for parents with disabled young children, these become even more crucial as the individual grows into a full sized adult:

• Lifting becomes harder and more hazardous, thus equipment can take the load off a carer or family member.
• Products like grab bars, shower chairs and portable ramps allow individuals to manage more of their movements solo vs. relying upon someone else.
• Private moments like bathing and toileting can be done with a large degree of independence (even if transfers are assisted).

For adults with a mobility impairment where they still have control and use over their upper body, assistive technology offers even more freedom as those with the strength can sometimes manage their own transfers and operate vehicles modified for upper body only driving.

For individuals with less functional use of their upper or lower body, assistive technology is an excellent support to prevent injury in both the mobility impaired person and the caregiver during transfers.

Despite increasing levels of independence, your adult child may still need your support. Even the most independent among our community need to be checked in with every so often; we’ve all had moments where we’d keep things to ourselves rather than ask for help.

As parents, you can ensure that your son or daughter has the right mixture of people, equipment, daily routine and goals to keep them happy and fulfilled.

Don’t hesitate to reach out to your loved one to find out how they’re going. It’s important to check in with the child to be sure their needs are being met and to collaborate with the OT and other members of the interdisciplinary team as needed.

Setting goals and achieving them together

Setting goals or having dreams is not the domain of solely able-bodied people. With anyone who is going through life with a disability, goal setting is a way to keep engaged in daily life, working towards a milestone that could represent a level of improved independence, or something unrelated to the disability such as securing a job.

It is important for the child to have the support and to feel empowered by their parent and/or caregiver and the OT to achieve the goals they set for themselves. Just remember these goals are things important to your son or daughter – your role is to support them as much as they want to get there. And the sense of satisfaction in achieving these goals is well worth the journey.

More information about this topic:

You can find useful information about this topic across the web via the following excellent online resources:

• Caring for a disabled family member: The importance of succession planning – Parent To Parent
• Planning for the future: The concerns among older parents of adult children with intellectual disabilities – McMaster Optimal Aging Portal
• Ways To Provide For Your Disabled Adult Child’s Future – Forbes.com