What A Parent Really Needs When Raising A Child With Special Needs

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What A Parent Really Needs When Raising A Child With Special Needs

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Let me start by being totally clear: I’m not pretending to have this all figured out. I’ve cried more about my daughter’s life-threatening medical condition than I’ve cried about anything else. She has a rare genetic difference that affects her eating—she does not eat (she lives off of a feeding tube), and throws up regularly, sometimes without being able to stop.

I thought my life would be one way, with healthy children who needed me only for a while as they learned to do the things at the ages that kids usually do things. But, it’s really not like that. So, yes, I struggle to adjust to my expectations of parenthood—trips to see the primates at Como Zoo, the boredom of playing blocks in the basement—with what our life is actually like—rehabilitative therapies, intermittent hospitalizations, and somehow, along the way, acquiring semi-legit nursing skills.

Based on my own experiences, here are my top 5 tips for surviving the very particular type of stress that is parenting children with special needs:

1. Build a support network.

Find other people that have also been humbled in a very real way. Keep reaching out even when you can’t imagine why they would want to still be your friend (like when they bring you dinner for the 4th time at the hospital). If someone offers something, accept it. Even though, of course, receiving help can feel scary and vulnerable and all of those things that, as humans, we sometimes try to avoid. Then do whatever you can to pay that love forward; it can sometimes quell the guilt around receiving help.

2. Take breaks.

My friend Jess has a code for this. She tells her spouse that she “needs a bath,” and then he takes over for a while. She’s a genius. I know there are a lot of times when it isn’t possible to tag out. And that’s when I take a 5-minute mini-vacation, usually while locked in the bathroom practicing deep breathing. It’s far from a trip to Tahiti, but it’s something simple that helps me reset.

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3. Use humor.

I have laughed more about vomit than I ever thought was possible. No matter what else is happening, even when we have to sit through hours at the ER, I always feel better after laughing. Sometimes when things are terrible and I don’t know what else to do, I try to make the nurses chuckle. Because nurses are the best, and then at least someone is having a good time.

4. Find your team.

If a doctor or specialist isn’t attentive, empathetic and helpful, we don’t visit them anymore. Ever. And then we find someone else who can give understanding and skilled care. Because of our daughter’s needs, we’ve met incredibly talented people. But we’ve had to make adjustments along the way to get that group in place. The reality is that we had to really work to find the ones that fit for our family.

5. Identify an outlet.

An outlet is something just for you, something to relieve the stress. For me, it’s writing. And taking walks. Okay, and also book bingeing at the library (when you check out so many books that your back hurts on the way out, and/or a librarian refers to you as a “heavy user”). Everyone has their thing(s). The most important part is to just keep going with it. Don’t give it up even though, yes, you’re exhausted and you can’t imagine how you can do it. Or anything. Just start, and then by the simple act of starting, you’ll be on your way.