Surviving special needs

Let me start by being totally clear: I’m not pretending to have this all figured out. 

If I’m honest with you, there have been times when I’ve felt as if I was barely surviving. Certainly, 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 things (at the ages kids usually do things). 

But, it’s really not like that. 

So, yes, I struggle to reconcile my expectations of parenthood (trips to see the primates at Como Zoo or, say, 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 who 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 fourth 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 she “needs a bath” and then he takes over for a while. She’s a genius. I know there’s a lot of times when it isn’t possible to tag out. 

And that’s when I take a five-minute mini-vacation. It’s far from a real vacation, but it’s something.

3. Use humor

I’ve 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 we’ve had to really work to find the ones who fit our family.

5. Identify an outlet

For me, it’s writing. And sometimes taking walks in inclement weather. OK, and also book binging at the library — you know, 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.

 


Emma Nadler lives in Minneapolis. She is the author of the Itty Bitty Yiddies blog (ittybittyyiddies.net) in which she shares true stories about her family — two kids, two parents and too many medical appointments (and a whole lot of love).