To the People I've Seen Less Since Becoming a Parent to Children With Special Needs
All parents know how hard it can be to make time to see friends and family when you have kids of any age. Young children have early bedtimes, kids in school often have lots of extra-curricular activities and teenagers have busy social lives and interests that require a lot of attention. If you have more than one kid then you just multiply that busyness, and if you work then you’re often trying to squeeze all of that in around whatever demands your job places on you, and many times your job doesn’t give a shit whether soccer practice starts at 6 across town or your kid got bullied in the lunchroom. That’s not your job’s job, so to speak.
If you have a kid that doesn’t fit the normal spectrum of kid development or behavior, then you can pretty much kiss life outside your home goodbye. That’s what it feels like sometimes, anyway. Explaining that to someone who isn’t in your shoes can be tough.
I’m blessed with an enormous family. Various partnerships left me with five parents and seven siblings, many of whom now have partners and children of their own. Negotiating time with everyone has always been a joyful challenge but has become even more so with my kids and their specific needs. That doesn’t leave much time for friendships, either. I’ve never been the type of person who had a huge group of friends and acquaintances. I’m pretty choosy and most of my friends have been friends of mine for many years. I like to say that I make a new close friend every decade or so. My husband has a million friends; he’s the social butterfly. There’s always someone who wants to have dinner or go to a show or whatever. We just can’t do that anymore.
It’s hard to explain to someone — particularly someone who has kids and has figured out how to have a life of their own — that you can’t deviate from your schedule, or that your kid doesn’t do well in certain environments or that you’re just too damn tired.
When you have a kid who is highly sensitive and has sensory issues and delays, schedules and routines are the glue that holds life together and makes your child feel OK. Sure, all kids like routine and feel more secure when they know what’s going to happen, but for kids like my “L,” it can mean the difference between five hours of sleep or two. It can determine whether or not you deal with a tantrum that ends in vomiting — so can the sensory input in different environments like, say, at Target or Chili’s. Too many people, too much noise, too many things to look at can be completely overwhelming. It can exhaust your child in no time flat.
Many, many kids and families with these issues also deal with sleep disorders. It’s incredibly common. For three years our family has lived with the sleep patterns of a newborn. Because L has been breastfed, and that’s been a primary source of comfort, that means that sometimes I wake up every 20 minutes. All night long. A good night is five or six hours of sleep. One night I got seven, and I mean one night. I was so unused to a decent night’s sleep when it happened that it freaked me out, and I was sure there was something wrong with L.
Figuring things out with L has been like putting a puzzle together; we’re finally making progress after changing L’s diet, adding in several different supplements and experimenting with different sensory items — none of which were suggested by our doctors, many of which were suggested by our therapists and naturopath. There have been many ignorant and unhelpful solutions offered by different folks here and there — “She’s spoiled; you need to let her cry it out” being one of the chief suggestions. I can’t think of anything worse for a kid with sensory issues and separation anxiety.
These days, I may get five to six hours a night pretty regularly. I can live on that. But when it comes to entertaining, or going out somewhere with or without the family, many times I just don’t have the energy. And worse, if I have a moment of quiet to possibly make a phone call, many times I don’t have the energy for that either. I simply don’t want to talk. I want to close my eyes, or read a book, or watch a rerun of “The Office”… I don’t have the energy for conversation. I left it all on the field, if you know what I mean.
So friends and family get the worst of that. They get neglected and time goes by and all you can say is, “I’m sorry, I’m so tired,” and it seems pretty feeble. A lot of times my family or friends have invited me over for dinner, and even that takes too much energy and also can’t be controlled… we really do have to leave by 7 to avoid a terrible chain of events that leaves us all seriously depleted.
All I can say if you are one of those people is that you’re in my heart. I think of you often. I love you so much. Please forgive me for not being there. I will be again, one day. Just not today and probably not tomorrow. But I do love you, I do. I do. I do.
And if you’re not one of my people, but someone in your life has a kid with any kind of special need, please forgive them if they aren’t there in a way they once were and love them even harder from afar.
This post originally appeared on Mom in Uncharted Waters.