8 things I am so done with as a special needs mom

an unhappy orange cat

August is a difficult month. School is out, routines are thrown out the window and it’s hot! Our neurologist is on vacation so we’re having to talk to doctors who are on call but don’t really know Ivan when we have medication and seizure questions. Plus all of his school specialists (like his PT or feeding specialist) aren’t available during summer break – sounds like a great time to start gagging on textured food for no apparent reason, doesn’t it? And Ivan’s school nurse who we love and helps to coordinate his care? Yeah, she’s on break too.

Throw in to the mix unreliable caregiver help and a mom who is supposed to keep working through the summer and you can see why August is a month of misery.

I’m losing patience and I feel totally selfish for being so annoyed with the world, but I’m going to list some of the things that have me on edge anyway. Indulge me.

I am so done with…

  • Being expected to do everything. I’m the mom, the coworker, the medical care coordinator… um, and the housekeeper, the cook and the chauffeur. I could really use a break. Or maybe a clone of myself? Or maybe fewer expectations, at least during the summer, would be nice.
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    I can clean, care for the kids, bring in an income, cook meals, exercise - but you have to pick only two!

     

  • Being both a mom and an employee. Working while juggling caring for a medically complex child is just so… impossible? I’m trying to do both and I am convinced I am doing neither very well. Both my child and my employment are suffering, and I feel awful about letting everyone down.
  • Caregiving help that doesn’t show up. This life of ours is in precarious balance, particularly during long school breaks, and so much of that balance hinges on a PCA or babysitter showing up on time and for their scheduled hours. When they cancel, the Jenga game falls. And let’s not even talk about the mom-guilt I feel when I realize I am upset about having to spend MORE time with my child. Yeah, let’s just skip that part.
  • Being asked, “How’s your summer going?” Why oh why does everyone have to ask this? We don’t ask, “Hey, how’s your fall going?” but everyone seems to feel obligated to check in on the status of my summer. It sucks, OK? Please stop asking.
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    I smile to hide how completely overwhelmed I am

     

  • Not being expected to ever give a truthful answer to the question “How’s your summer going?” But don’t ever respond to someone asking about your summer that summer sucks. They don’t want to hear that. “It’s fine,” is about the best I can muster.
  • All the non-special needs people who say they totally get it. But if someone notices the sleep-deprived lines on my face and the stress in my voice I might admit that summer is a difficult time of year. This is when a well-meaning friend or co-worker (who does not have a special needs child) will nod and say they totally get it. No, they don’t. I particularly get annoyed when my childless friends try to commiserate with me on the difficulty of August.
  • All the schools that start in August when ours starts in September. This is just pure jealousy. Seeing all our friends sending their kids back to school when we still have two and half weeks of break left! Sigh.
  • All the articles and buzz you always get this time of year about how hard it is to send your kids off to college (like this one). Seeing all the moms and dads moaning the bittersweet pain of sending little Jimmy off to college creates an ache in my gut like no other. Everything else pales in comparison. I may complain about other things, but this is the only one that actually makes me cry. They say, “Saying goodbye to a child leaving home is an experience that never changes.” Well, when your child is more likely destined for a group home than a college dorm, I think the experience will be very different indeed.
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    8 Things I am so done with as a special needs mom

     


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