Springboard for the Post: Advice for the Friends of Parents Raising a Special Needs Child

I had three or four different ideas for the “hook” of this blog:

Top Ten Things You Can Do to Support Your Friends Raising a Special Needs Child (trendy but over simplistic)

Good News/Bad News: Good News! You’re not raising a special needs child; Bad News! Your friend is and it’s tough on your friendship
(catchy but the undertone of sarcasm could be mistaken for anger)

Friendship for Dummies
(simply insulting and not applicable–my friends may get offended)

Parenting a special needs child (usually) involves a huge learning curve; reading and research means less time for being social with friends. It gets even more complicated when parents work full-time. For me, over the last four years, this has meant combing blogs, websites, discussion boards, and library databases for information about epilepsy, epilepsy syndromes, and LKS in particular. I’ve slogged through medical articles too, again and again and again. In the last year, this has also meant learning American Sign Language—a commitment of six hours a week. And this is just a quick list.

Parenting a special needs child (often) involves time-intensive visits to doctors, specialists, and therapists. I travel four hours to St. Paul, Minnesota to see Holden’s team 3-4 times per year for 2-3 days at a time. Again—less time for spontaneous coffees, lunches, or meetings at the bar. ☺ But because the emotional intensity of these trips is tough to unwind from, these might be more needed than you know.

Parenting a special needs child (often) involves a huge shift in day-to-day life routines. For me, this means a lot of worry and time spent focused on Holden—whereas most parents can tell their eight-year-old “great ready for school” and getting dressed will ensue, it doesn’t work that way for me. Holden needs one-on-one supervision and prompting. For example, this morning, he woke up at 3 a.m. I thought I’d gotten him back to sleep around 3:15, but just as I dozed off around 4 a.m. I heard him open the back door. I rushed downstairs to find him sitting in my car—a new obsession for him. Sometimes it takes a long time to get places on time, and even longer to make dinner or do household chores when he flits around the place. Again, this eats away at time for social interactions. Even phone calls get difficult to place, often because of the emotional energy needed to place them. Maybe it’s just me, but I often worry about venting too much, saying how shitty my day was or how stressful it was to have your child screaming every two-three minutes for two hours about the mosquito bites “burning” on the back of his neck. And to gather the undivided attention is tough, too; many times I have to put down the phone to redirect Holden. When I do need to talk sometimes, I don’t want to burden my friends. These stories MUST get old. So keep in mind: even if your friends can make the time to talk, they might be having a hard time placing the call.

Parenting a special needs child means an increased necessity to make more times for habits, activities and techniques to keep oneself strong and healthy. Sleeping and eating right are essential. Although friendships are definitely a part of healthy practices, sometimes they take a back seat to exercise, meditation, or spiritual~religious practice because without a parent working on being more stable and healthy mentally, spiritually, and physically, the Special Needs Child suffers more.

Parenting a special needs child (usually) involves the emotional life of the parent being stretched very thin. For me, the roller-coaster effects of LKS—Holden has good moments in bad days, good days in bad weeks, good weeks, and lots of ups and downs; this requires a lot of strategic flexibility in the ways I plan, schedule, and otherwise “approach” life. My emotions often reflect this. I get happy when Holden produces some sort of complicated language “Mom, are you still in there doing the dishes?” then it crashes when he dumps his dinner on the floor because I won’t let him play with his iPad as he eats (and because he can’t tell me how he’s feeling). Then I get frustrated/angry/sad. The fact that Holden’s LKS will resolve during puberty but still leave some sort of brain damage (resulting in residual language issues) is both good and difficult because I don’t know exactly when this will end or what the effects will be. Sometimes when faced with a challenge, I’ll just dig my heels in and “get through it,” but this doesn’t feel like an effective strategy for parenting through LKS. This takes an emotional toll.

During the writing of this blog post, my best friend Rochelle called me. When I told her what I was doing, she said, “A list of strategies for friends would be great.” Brainstorming, I listed these out as ideas for “Friends of Parenting Raising a Special Needs Child” to her:

1. Send emails.
2. Call them.
3. Ask them over for social engagement (both with or without Child).

She interrupted me. “Of course. Those are common sense. But they aren’t what keeps people from reaching out.”

Immediately, I knew she was right. It was the difficult feelings: guilt, sadness, inability to “fix it” in any significant way, managing one’s own emotions and mustering up patience, etc. It takes work for the friends—more work then usual.

And I don’t know strategies to solve this, really. But here’s a brainstorm:

1. Honesty—naming and voicing the complex feelings you have about being a friend to a parent raising a Special Needs Child.
2. Inquiry—asking questions you don’t understand about the disability/disorder/special needs.
3. Reflection—thinking about what you would want/need in the same situation.
4. Cultivate flexibility—keep an open mind about interactions.

Thanks to all my awesome family and friends—without you this whole “journey” (ha! love that euphemism) would be a hell of a lot tougher.

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2 Responses to Springboard for the Post: Advice for the Friends of Parents Raising a Special Needs Child

  1. Lauren says:

    Hi Christine! Great writing as always. This was a fascinating read.

    A couple weekends ago, I was taking the subway to Coney Island. A child near me was screaming sporadically. At first, I thought he was just excited to be going to CI, and I scowled at his parents for allowing him to behave this way on a subway car. Soon, however, I started to realize that I was judging too quickly, and I was witnessing more than just an “excited” child. I thought of you and Holden, and I realized then how difficult it must be to go on big family outings like that when there are clueless people like me who can be so quick to frown upon one’s parenting skills without considering the circumstances. I quickly changed my attitude, but most of the people on the train continued to scowl and suck their teeth at the family. 😦

    You are such a strong woman, and you will never cease amazing me!

    • Christine says:

      Thanks for the kind words, Lauren. I was the same as you before I had my experiences parenting Holden. I appreciate you putting your example out into the world. Hugs.

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