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5 Lessons to Embrace the 'Marathon' of Special Needs Parenting

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I recently became a runner. At age 48 I decided, having never run further than half a block, to sign up for a marathon. It started with an 8-week “pre-training” training, followed by actual marathon training. Coincidentally, we celebrated the 16th birthday of my son, who has a rare genetic disorder, on my first day of “real” training.

I have learned so much about myself, both physically and mentally, through this training process. As I graduate to longer runs, I recognize the parallels between parenting a child with special needs and running a marathon. More importantly, I now understand that just as I train and prepare to run, a special needs mom needs strategies and preparation for her marathon.

Here the top 5 lessons I’ve learned to succeed in the special needs parenting marathon:

1. Get a group. I just happened signed up for the marathon with a team. Team World Vision sent me the training schedule, added me to several Facebook groups, organized weekly group runs, and supported me every step of the way. I made lots of new friends who were in the training with me, and also some new friends who would be running their seventh or eighth marathon. I can truthfully say that without that high level of support and accountability, there is no way I would have stuck through the bad days.

Isolation is epidemic in the special needs parenting community. You can survive like that for a little while, but if you’re marathon-ing this thing, you just won’t make it without a solid support group. Groups encourage each other, and offer assistance and support. A group can be two people, or 20 or 200. As with running, a group can help you get through the difficult days.

2. Fuel your body. Did you know that marathon runners carry fuel (food) with them on the race course? They also have specific meals they eat or avoid the night prior to a long run. Nutrition is probably the most underestimated key to marathon parenting. When “typical” kids are in that stage where Mom has to chauffeur them everywhere and keep a close eye, she might have to survive on fast-food drive thru and candy bars at the check-out line. That’s OK, eventually she’ll get back to the gym and grilled chicken as her kids become self-sufficient. Marathoners need to be running strong after mile 20. I need my heart, lungs, muscles and bones to be strong longer than most, and that means I have be much more careful of how I fuel. Nutrition is as important for you as it is for your child.

3. Get some rest. Marathon runners know that sleep is the key to their body’s performance the next day. They listen to their body, so the night before and after a 18 mile run you will most likely find them in bed at 9 p.m. Parents of newborns can make it through those weeks and months of no sleep because eventually their baby is going to sleep through the night. I know special needs parents who haven’t slept through the night in 12 years. Get some sleep. You must allow your body and mind to rest in order to perform at the level your child needs. Do whatever it takes to get some sleep every so often.

4. Win the mental game. I think the one thing about running longer distances that took me by surprise was how mentally challenging it was. I assumed that the struggle would be physical. I thought my legs would get too sore to move, and I’d stop running before I crossed the finish line. That never happened. What happens frequently on longer runs is that my mind says: “this is too far/hot/long/awful, let’s stop running now.” My legs can keep going, my heart and lungs are still pumping, but my mind is trying to shut it down.

Likewise, I realized that one of my biggest struggles as a special needs parent was in my mind. Training my mind to not throw pity parties or be angry about my son’s condition took a while. But eventually I succeeded in shifting my perspective. If I shut down negative thoughts and welcome a new grace every morning to get through that day, I’ll make it. Don’t let your mind be your enemy.

5. Embrace the marathon. For the first few weeks of marathon training, I woke up every Saturday morning thinking “Oh my gosh, I can’t possibly do X miles today.” And then every Saturday when the long run was complete and I was still alive, I felt the most overwhelming sensation of joy. Maybe a runner’s high? I just know that eventually my Saturday morning mentality shifted, and I woke up anticipating that joy at the end of the day’s big run. I began to embrace the fact that I was going to eventually get to 26 miles, rather than fear it.

My first years as a special parent were no different. I woke up worried each morning, and approached each milestone missed or specialist update with trepidation. But eventually I began to recognize the profound joy within the journey. I was able to see that I experienced depths of emotion, faith and love that most typical parents won’t ever know. I now embrace this role and cherish this special blessing that I’ve been gifted. I look forward to every step of the way as a new treasure that will surely unfold before me as I embrace this marathon.

Follow this journey at

Originally published: September 2, 2016
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