11 Things Special Needs Parents Need

Beyond Sympathy

Stressed Mom
Getty Images

Every parent deserves credit when they work hard for their kids. Every parent needs help now and then. Every parent needs time for him or herself.

So what makes parents of special needs kids so... special? What do they need that other parents don't? How can the people in their lives help special needs parents to get what they need?

11 Things Special Needs Parents Need

Here's a partial list that may sound familiar to moms and dads who are coping with the ups and downs of life with a child who, for whatever reason, is considered to be "special." While these are the top 11, they're in no particular order.

1. Time

Between PTO meetings and work deadlines, it can be hard for any parent to find "me" time. Magnify that 10 times for parents of children with special needs who must also add IEP meetings, therapy appointments, and multiple doctor visits into the mix. Add challenges such as driving 50 miles to get to the only dentist who will work with your child, 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 there's a special needs ballet class on the other side of the county. And let's not get started on time for yourself, your partner, your other children, your extended family.

2. Energy

Not only is it time-consuming to be a special needs parent, it's exhausting. Add up all the energy required to raise a typical child, and then add hours a day for driving to out of town appointments, filling out paperwork, doing more research, managing your child's meltdowns, cooking special foods for your child because of allergies, intolerances, or feeding issues.

It all adds up to very few hours between the sheets.

3. Money

Two parents working full-time should, in most cases, be able to earn enough money for a family to live comfortably. But when you're the parent of a child with special needs the costs increase. Special equipment, medicine, therapists, extra gas—it all adds up.

And many mothers of kids with special needs wind up cutting back their work hours to be available for their child, thus decreasing their income when they need it most.

4. Ordinary Friendship

When you're the parent of a special needs child, it seems that every interaction outside of work involves some aspect of special needs parenting. Even your social get-togethers wind up including mostly parents of other special needs kids, with conversations focused on "the best therapist for x" or "how rotten the resource room teacher is." But just like everyone else, parents of kids with special needs crave plain, ordinary human contact. A beer with friends. A baseball game. Time to just kick back with friends and family without reference to the word "special."

5. A Sitter for Date Night

Parents of typical kids hire a sitter and go out for the evening. For parents of special needs kids, it's not always that easy. Some special needs require sitters with special abilities that can range from medical training to autism expertise. Not only are such sitters hard to find, but (naturally) they charge double or triple the going rate.

6. Reassurance

If your child has special needs, chances are you've spent an unreasonable amount of time agonizing over whether you somehow caused her problems, whether you've chosen the right medical or therapeutic options, whether you're doing enough (or too much) to improve her chances in life.

While no one can tell you what the future will bring, most special needs parents need a listening ear and a positive response when they feel nervous about their own choices and what the future will bring.

7. A Place to Vent

Your partner has heard it all 50 times. Your parents have either heard it or don't care. 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 it in, parents of special needs kids may only make matters worse, but what are their options?

8. Exercise

This may sound like a minor issue, but for many parents of special needs kids, there simply aren't enough hours in the day for exercise.

Exercise is, for many people, a huge stress reliever. It can also be a chance to socialize with friends. Just as importantly, lack of exercise can lead to serious health issues.

9. Family and Friends With a Clue

It's amazing how often even well-meaning family and friends become anxious and short-tempered when exposed to a child with even mild special needs. An autistic child doesn't want to play touch football, or a child with sensory challenges puts his hands over his ears, and everyone in the room seems to respond with judgmental surprise. While the child himself may not be aware of the raised eyebrows and exchanged glances, parents certainly are. And while it's difficult to cope with judgments from strangers, it's much harder to let close friends' judgments roll off your back.

10. Information

Schools, doctors, therapists, and agencies are all set up to help families support their children with special needs. 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 parents of special needs children will tell you that you already need to know special needs law, understand the ins and outs of agency options and policies, and have a full grasp of all available therapies before stepping foot in a planning meeting for their child. Often, parents know more than the so-called experts when they walk in the door, which means that Mom and Dad have the equivalent of several years of university training as a result of their late nights in front of the computer.

11. A Coach

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 special needs 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 to Help a Parent of a Child With Special Needs

If you're the friend, sibling, mom, or dad of a parent of a child with special needs 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:

Offer to babysit. If it's within your comfort and ability zone, give your friends a break by looking after their special needs child for an hour, an evening, or even a weekend. This is called respite care, and it's an extraordinary gift.

Pick up the tab. 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.

Give siblings a special treat. Many people with special needs kids have typically developing children who also need attention. When you can, consider taking the siblings of a special needs child out for a treat, or even chauffering them to their sports events and cheering them on. It's a great way to build a relationship while giving Mom and Dad a little time to themselves.

Get a clue. Don't be that sister, cousin, or parent who stares blankly at a child with special needs 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 during family events. 

Listen. It won't cost you a nickel to be a listening ear and a shoulder to cry on.

Take a walk. Give the parent of a special needs child a chance to get outside in the fresh air and get a little exercise with a friend or loved one.

Be supportive and positive. It's all too easy to get into negative talk when discussing a child with special needs. 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.

Avoid pity. While it's sometimes hard to imagine the challenges of special needs parenting, pity doesn't help. In fact, pity can reinforce frustrations and feelings of isolation. Avoid it.

Set an example for inclusion. Show others how inclusion is done by finding ways to include your friend's special needs child in ordinary activities. If you need to, accommodate challenges. For example, if the child with special needs has a hard time climbing to the top of a slide, give her a hand. If she can't pump a swing, give her a push. If she's not quite understanding the rules of a game, simplify the game. It's not as hard as it looks!

Sources:

Diament, Michelle. Autism moms have stress similar to combat soldiers. DisabilityScoop, November 10, 2009.

Minnes, P., Perry, A., & Weiss, J. A. (2015). Predictors of distress and well‐being in parents of young children with developmental delays and disabilities: the importance of parent perceptions. Journal of Intellectual Disability Research59(6), 551-560.

Peer, J. W., & Hillman, S. B. (2014). Stress and resilience for parents of children with intellectual and developmental disabilities: A review of key factors and recommendations for practitioners. Journal of Policy and Practice in Intellectual Disabilities11(2), 92-98.

 

Continue Reading