My husband and I are parents of two adult daughters on the Autism Spectrum. When you’re the parent of a child with special needs, every aspect of parenting is magnified. We had many challenges with them growing up. There were many trips to the doctors, worries about how they will act in public, stares from strangers, day-to-day struggles with behaviors, fewer dates for just the two of us and so much more. But through the years, we never gave up. We tried many natural alternatives trying to find answers. Six years ago, we found Young Living and that is when we started noticing significant decreases in negative behaviors. The joy that was hard to find during those challenging years was restored. This week on my Facebook page “Freedom-n-Joy Essentials” I am sharing about “Oils with Special needs”. If you are a parent with a special needs child, or you know of someone, please feel free to join this group, or pass this along to someone who may benefit from this.
In this blog, I’ll share some of the daily challenges a parent of special needs children faces so that you may be better able to understand their path. With a greater understanding, it will be easier for you to extend grace or offer help. I encourage you not to look down on parents that need to decline lunch dates or outings with friends. It may be more complicated than it appears on the surface.
More 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.
Add to that the necessary time for yourself, your partner, your other children, your extended family. The time demands add up quickly.
Energy Reserves
Not only is it time-consuming to be a special needs parent, but it's also 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, or cooking special foods for your child because of allergies, intolerances, or feeding issues.
Toss in the energy required to cope with strangers' stares, teachers' "concerns," and grandparents' worries, and it all adds up to very few hours between the sheets.
Money for Critical Expenses
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 to drive to all those specialists—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.
Adult Friendships
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 special the resource room teacher is."
But just like everyone else, parents of kids with special needs crave plain, ordinary human contact. A night out with friends, a baseball game. Time to just kick back with friends and family without reference to the word "special."
A Sitter for Date Night
Parents of typical kids hire a babysitter 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 babysitters hard to find, but (naturally) they charge double or triple the going rate.
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.
An Emotional Outlet
Your spouse had 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?
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.
Exercise and Nutrition
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 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 exercise can lead to serious health issues. The same, of course, is true of nutrition: too many fast-food meals can wreak havoc with your digestion, weight, and wellness.
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 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.
Resources
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.
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 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 You Can Help
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:
- Avoid pity. While it's sometimes hard to imagine the challenges of special needs parenting, pity doesn't help. In fact, pity can reinforce the frustrations and feelings of isolation. When I meet someone for the first time and I tell them that I have two special needs daughters, I’ve heard comments such as “I’m so sorry” or “Wow, how do you do it?” or “I feel so bad for you”. Those people likely mean well but those are very hurtful words. Please don’t sympathize. Our daughters are not a mistake. God placed them in our lives for a reason and He is using us to minister to others who are in the same situation. Ultimately, God will be glorified through it all.
- 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.
- Be proactive in understanding. 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.
- Give siblings a special treat. Many people with special needs kids have typical children who also need attention. When you can, consider taking the siblings of a special needs child 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 Mom and Dad 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 special needs child for an hour, an evening, or even a weekend. This is called respite care, and it's an extraordinary gift. We are very grateful to our family and respite worker for offering to watch our girls and be a huge support to us when needed. This is one of the things that helps us thrive even during difficult times.
- 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, coffee, or even a dinner out.
- Set an example of inclusion. Find ways to include your friend's special needs child in ordinary activities and accommodate challenges. For example, if a child with special needs 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.
- 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.
Go today and be a good friend or relative to those in need. Do not judge but instead offer to help in any way you can. You will be appreciated more than you know, and you will be blessed in return.
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