The one thing I haven’t learned as a special needs parent

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A lot of people write about what they’ve learned as a special needs parent. You can find these posts on The Mighty, Today’s Parent or (my personal favorite) Without a Crystal Ball (among other places).

The words are relatable and true, not to mention often inspirational. My life is so much better now that my son is a part of it and remembering that is a very good thing.

But I also sometimes think about the things I’ve not learned as a special needs parent and there is one in particular that stands out: I have not learned patience. I’ve heard other parents talking about how much more patient they are now because they’ve learned to take the time to enjoy their child and live in the moment.

And while that is true, being a parent of a medically complex child teaches you perspective and how to really enjoy the little things in life, there’s also another side to that coin. I have patience beyond measure for my son, but for others? Sometimes not so much.

    • I’m not patient with doctors who don’t return my calls when I ask serious questions about my son’s medical condition. And I will keep calling until I get an answer so let’s make life easy on everyone and just return my call.
    • I’m not a patient person while I wait on hold with the insurance company. I make snide comments, I curse, I criticize their hold music. But then I am a sweetheart when I finally get through because I know you catch more flies with honey.
    • I have no patience for people who complain about their perfect lives. I was taking Ivan to the bathroom at a local cafe and walked by a young woman standing in line with her friend. She was nearly in tears because her whole day was ruined (RUINED!) because she had slept in later than she intended and that had thrown off her “rhythm” and then she planned to go to the gym but her boyfriend had taken the car! “It’s not about how I look it’s about how I FEEL!” she whined. It took all my self control to not say something sarcastic to her.
    • I’m not patient with people who are concerned about the words I use and especially people who are concerned with the order in which I use them. Language matters, I get it. But I have learned to prioritize my worries and words is not one of them. I worry about seizures that last more than five minutes or anti-epileptic drugs that make it difficult for my son to breathe while sleeping. Is he blind? Yes! Is he a blind child or a child who is blind? I don’t care! Is it better to say disabled or special needs? Not on my list of concerns, to be honest.
    • I’m never patient with a system that recognizes my son’s serious medical condition, yet still tries to schedule all his appointments months in advance. If we can manage to wait 6 months to see endocrine, that’s fine, but when I need to see neurology ASAP I’m not waiting for the next available for 3 months. Let’s at least get on the phone or get creative and FaceTime, but I’m not waiting in silence for months.
    • I have little patience (but maybe a little) for people who argue that disabilities aren’t negative. My child is a positive thing in my life so it is hard for me to say that his having a disability is bad because nothing about him is bad. He’s perfect. On the other hand, if I could cure his epilepsy and give him back his speech, I would do so in a heart beat. I get annoyed when others accuse me of not loving my son enough to just be happy with who he is. Of course I’m happy with who he is! But that doesn’t mean I have to love the disability as well.
  • And last but not least, I sometimes get impatient with the mundane. Sitting in a meeting at work discussing messaging tactics might be important in the moment, but it can be really difficult for me not to sink into thoughts about how much bigger my life is now that I spend most of my waking hours worrying over another human being’s health and existence. Suddenly everything can seem small in comparison and that can be a very scary place to sit in for too long. It can also be paralyzing. Why pursue any interests at all when your child’s LIFE is always at the forefront of your concerns? It can be a good reality check now and then to maintain perspective, but I don’t suggest mulling over those thoughts for too long.
The one thing I haven't learned as a special needs parent

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