With so much more to think about, worry about, plan for, and manage, it is paramount that you’re taking good care of yourself.
11 Needs of Guardians of Disabled Children
Here’s a partial list that may sound familiar to parents and guardians of disabled children, especially if they have a disability themself. While these are the top 11, they’re in no particular order.
More Time
Between PTO meetings, helping out with homework, and work deadlines, it can be hard for any parent to find “me” time. Magnify that for parents of children with disabilities who might also have IEP meetings, therapy appointments, and many doctor appointments in the mix. Add challenges such as driving 50 miles to get to the only dentist who will work with your child’s sensory needs, only to learn that you’ll need to come back next week to fill that cavity… and then driving 60 miles in the other direction because your kid wants to take ballet and the only mobility-inclusive ballet class is on the other side of the county. And let’s not get started on how the rest of your time is spent working or nurturing relationships with your partner(s), your friends, and your extended family.
Energy Reserves
Not only is it time-consuming to be an advocate for your child on top of parenting, it’s also exhausting. It takes a lot of energy to raise a child, and then add hours a day for driving to out of town appointments, filling out paperwork, reading new studies and research articles, caring for your child during meltdowns and flareups, or cooking special foods for your child because of allergies, intolerances, or feeding challenges. Toss in the energy required to cope with strangers’ stares, teachers’ “concerns,” and grandparents’ worries, and it all adds up to very few hours of rest.
Money for Critical Expenses
Without taking into account the effects of inflation, a low minimum wage, employment discrimination, and other systemic barriers, the typical costs of raising a child increase if the child is disabled. A multi-income household should be able to earn enough money for a family to live comfortably, but that is not always the reality, and many households are led by one parent or guardian. Mobility aids, communication devices, medicine, specialist co-pays, and the extra gas to drive to all those specialists—it all adds up. Many parents of disabled kids also wind up cutting back their work hours to be available for their child, thus decreasing their income when they need it most.
Adult Friendships
When you become a parent, it seems that every interaction outside of work involves some aspect of parenting. This reality is enhanced for guardians of kids with disabilities who frequently have to take on businesses, school districts, and local and state governments to ensure their child is treated fairly. Parents and guardians of disabled children often have to adopt the roles of mediator, advocate, researcher, and more, filling in for the large gaps in institutional policies concerning people with disabilities. These responsibilities mean that there is little time to grow or develop friendships. Even social get-togethers can wind up focused on “the best therapist for x” or “how rotten the resource room teacher is.”
A Sitter for Date Night
For parents of disabled kids, hiring a babysitter is not always as easy as it should be, Some disabilities require sitters with specialized abilities that can range from medical training to expertise on neurodiversity. Not only are such babysitters hard to find, but (naturally) they charge double or triple the going rate.
Reassurance
If your child has a disability, chances are you’ve spent an unreasonable amount of time agonizing over whether you somehow caused their disability (you didn’t), whether you’ve chosen the right medical or therapeutic options, whether you’re doing enough (or too much) to ensure they have a happy, fulfilling life.
An Emotional Outlet
Your partner has heard it all 50 times. Your siblings and parents have heard it. Your friends aren’t interested in hearing about your latest frustrating IEP meeting, nor are your coworkers. You can’t vent to your kids. So who’s left? By holding their emotions in, parents may only make matters worse, but what are their options? Support groups can be helpful, but to get to them you need to find the right group, clear time on your calendar, drive to the meeting, and hope the members will have the time and energy to respond to your concerns.
Physical Activity and Nutrition
This may sound like a non-issue, but for many parents advocating for their disabled children, there simply aren’t enough hours in the day to fulfill their daily needs or practice self-care. Exercise is, for many people, a huge stress reliever. It can also be a chance to socialize with friends. Just as importantly, a lack of physical activity can lead to serious health issues. The same, of course, is true of nutrition: too many highly processed meals can wreak havoc on your digestive system and overall wellbeing.
Compassionate Family and Friends
It’s amazing how often even well-meaning family and friends become anxious and short-tempered when exposed to a child with disabilities. A child with chronic pain might be uncomfortable playing touch football, or a child with sensory challenges might put their hands over their ears, and everyone in the room seems to respond with judgmental surprise. While the child themself may not be aware of the raised eyebrows and exchanged glances, parents certainly are. And while it’s difficult to cope with bigotry from strangers, it’s much harder to let loved ones’ judgments roll off your back.
Resources
Schools, doctors, therapists, and agencies are all set up to help families support their disabled children. Why is it, then, that none of these entities seem eager to actually tell families what’s available, what they’re entitled to, and how to get what they need? Most guardians and parents of disabled children will tell you that you already need to know disability law, understand the ins and outs of agency options and policies, and have a full grasp of all available medical and therapeutic procedures before stepping foot in a planning meeting for your child.
Guidance
None of us go through life more than once, so all of us are novices when it comes to parenting. But there are people who make a profession out of helping parents of children with disabilities to navigate the options and pitfalls. Most parents would be thrilled to have the help of such a coach who could tell them “ask for this, not that,” or “fill in this form and you’ll have access to better services for your child.”
How You Can Help
If you’re the friend, sibling, or parent of a parent of a disabled child you may be wondering “What can I do to help?” The good news is, there are many ways you can make a difference without changing your life or overwhelming yourself and your family. Here are some suggestions:
Avoid pity. While it’s sometimes hard to imagine the challenges your loved one goes through, pity doesn’t help. In fact, pity can reinforce the frustrations and feelings of isolation. Be supportive and positive. If you’re not disabled yourself, it’s all too easy to get into negative talk when discussing a child with a disability. Instead of spiraling downward, though, do your best to accentuate the positive. Tell your friend or loved one that they’re doing a great job, and point to some of the very real positive outcomes they’re almost certainly seeing. Get a clue. Don’t be that friend, cousin, or parent who stares blankly at a disabled child and wonders how to engage with them. Instead, read a book, watch a video, attend a class, or ask questions so that you can jump right in and engage in a loving and appropriate manner during family events. Give siblings a special treat. Many people with disabled kids have non-disabled children who also need a lot of love and attention. When you can, consider taking them out for a treat, or even chauffeuring them to their sports events and cheering them on. It’s a great way to build a relationship while giving their guardians a little time to themselves. Listen. It won’t cost you a nickel to be a listening ear and a shoulder to cry on. Offer to babysit. If it’s within your comfort and ability zone, give your friends a break by looking after their child or children for an hour, an evening, or even a weekend. This is called respite care, and it’s an extraordinary gift. Pick up the tab. Personal loans are probably a bad idea for many reasons, but when you can, it’s great to pick up the tab for a lunch, a beer, or even a dinner out. Set an example of inclusion. Find ways to include your loved one’s child in common activities and accommodate their needs. For example, if a child has difficulty climbing to the top of a slide, give them a hand. If they’re not quite understanding the rules of a game, simplify the game so everyone can join in. If they use a mobility aid, verify that the location you’re inviting the family out to is physically accessible. Take a walk. Give the parent a chance to get outside in the fresh air and get a little physical activity with a friend or loved one.
