There’s something I’ve been meaning to completely, unashamedly steal from the LGBT community. It’s the “It Gets Better” series. I want to adapt it for Holland. Until I actually have the time to do that, I offer this post instead to anyone interested, and especially to any parents of special needs kids who are still raw from just getting the news who happen to wind up here. (It’s worth noting that my guy is still quite young, but I thought I’d describe where we are now.)
When you get such a diagnosis, eventually someone will send you this poem? prose-y thing? called “Welcome to Holland.” The gist is basically that while part of you will always grieve, having a special needs kid is not worse than having a typical kid – it’s just different. Parents of special needs kids (at least, the ones I know) will sometimes use the word “Holland” to refer to the state of being a parent of a disabled kid. “It’s been a rough day in Holland,” that sort of thing. Here’s a more bitter and honest take, which addresses the cloyingness of the original poem, as well as the complete rawness and pain of the weeks and months after the realization you’ve got a disabled child. It’s actually from a mom of a disabled kid who writes one of the most upbeat and energetic blogs on the topic. I wish I’d read it earlier.
Both do get at an essential truth, though: really, it does get better.
So here is a list of the things I would not have imagined to be the case before September 2009, when we found out we were in Holland. I’m including bad stuff, because I felt very alone when dealing with the bad stuff. In order from worst to best.
- The months after the realization are absolutely, unmitigatedly horrible. Even though, like every pregnant woman, I dreaded the idea of getting such a diagnosis in the abstract, I don’t think I realized how long the pain of it would last. I remember thinking when Sarah Palin was running for vice president that it must be difficult to leave a four-month-old at home. Although I knew he had Down syndrome, it didn’t even occur to me to think that she and her family might be reeling from the diagnosis. You wake up every day, remember your new reality, and would give anything to crawl back into bed. You’re totally unconvinced you can parent this child. Yet you scour the internet and what do you find? You read the Holland poem, and read very rah-rah parent blogs, and you think these people are either a) completely self-deluded, or b) feel the need to maintain a Potemkin village of happy parenthood, or c) that these people are only okay with everything because they are super-religious, and if you’re less than super-religious you can’t get to that place. And that you’re a complete remorseless jerk for being so depressed.
- You hear the phrase “mental retardation,” or “intellectual disability,” or “developmental disability” or “I/DD.” So you believe it’s all a thinking problem. You don’t realize how much of it can be physical (obviously, your kid’s mileage may vary). Besides all the motor problems, there are tons of other medical problems — even for those who are born without major organ defects. The brain does a lot besides think. I had no firm picture in my mind that I/DD could mess with my kid’s digestion so much that he would require a feeding tube and have constant constipation issues. Or that he would be really, really bad at regulating his own body temperature (we can’t take him outside when it’s above 85 degrees). Or that he would be susceptible to pneumonia because he doesn’t swallow frequently enough. Or that developmental delays might not mean just a matter of a few months, but that he can’t walk until 4 or 5 or 6 or 7 (if at all). Or that he has way too high a pain tolerance. Etc.
- I had no idea how physically demanding it is. A child who has low muscle tone and cannot support his own weight is a much heavier load to carry than one with typical muscle tone of the same weight. If your kid has psychomotor issues (and mine got hit even harder with the psychomotor stick than the cognitive stick), you’re talking a lot of dead weight up and down the stairs and in and out of baths. Plus a 40 pound wheelchair that needs to get taken apart and put back together every time you go in and out of the car.
- The future is scary. What happens when you die? What happens if he’s not using the toilet? What are the burdens on siblings?
- The therapies. Again with the therapies. Occupational, physical, speech, blah blah blah endless therapies.
- Here are the moments that seem to still hit me and other parents who have made the adjustment hard: Birthdays. Seeing kids your own kid’s age do developmentally appropriate things (although this is mitigated if you have typical kids, too). Being stared at in public. Being unable to just sit back and enjoy a family gathering or a restaurant night out (my kid is actually great in this regard behavior-wise, but it’s still an issue with the wheelchair and all). Seeing a whole family doing something your family cannot do all together, like going on a hike in the woods. Endless doctor appointments and health scares. The moments when you suddenly see your kid through other people’s eyes, or think about how you might have reacted.
- The days where you feel, “I can’t get out of bed and do this again” and “I didn’t sign up for this!” get fewer and further between. Really they do. Maybe it is self-delusion, but it happens. And you fall in love with your kid, in a way you never knew you could. Bad moments do not go away entirely. But most days have no seriously bad moments. If anything, just sort of aggravating ones.
- Life returns to normal. Really. Really. Really. You worry about bad hair days again. You worry about what color you should paint your bedroom. You can have sense of black humor about your kid’s disability. At this point, I am, if anything, happier than I was before I had my disabled kid. More stressed, without question. But happier.
- Disabled parking pass!
- The general public is much more accepting than you might expect. People may sometimes stare, or deliberately avert their eyes. But I have had exactly three clear-cut cases of hostility, and absolutely countless beatific smiles. Restaurants, hotels, theaters, etc., generally bend over backwards to try and accommodate you (and often out of genuine good will, not just fear of lawsuit or bad publicity).
- You meet some seriously, seriously awesome people. First, you become much better at seeing past disability and seeing how seriously awesome many disabled people are. Then you meet the people who work with disabled people, many of whom are the kindest, most dedicated people around. Then you meet other parents who are also in Holland and understand. You have a closeness. One of my closest friends is a Holland mom, and I’m so glad she’s now in my life.
- You get to see your kid win over someone who is initially nervous or uncomfortable around him. Which is totally awesome.
- Did I mention you’re in love with your kid? That every milestone he meets is all the more special because you had no idea if he would ever get there? Recently I had to fill out a form for an IEP assessment, and it asked my opinion of his intelligence. I know the answer is severely below average, but I wanted to put “Given everything, he’s a total genius, and if you can’t see that, then look harder, damn it!”
- A mom of a fifteen-year-old girl with the same syndrome said to me recently, “My fifteen-year-old says ‘I love you, Mom!’ every single night.”
Forgive me if I’ve said this before, but one Holland parent once told me something that sums it up perfectly. “It’s like having a typical kid, but much more so.”
“What are the burdens on siblings?”
Have y0u read Rachel Simon’s Riding the Bus with My Sister? I haven’t seen many things written from the perspective of a sibling of a person with a disability, but this is the best I’ve seen so far. Her sister Beth’s disability does not impact as many aspects of her life as your son’s or as severely, but it might be worth reading. If you haven’t already.
“I had no idea how physically demanding it is.”
When I worked directly with a woman who relied heavily on physical supports, I found this out the hard way. All of the lifts and ramps and specials gadgets they come up with to assist people with limited mobility to get around, are worth the thousands of dollars they charge for them. I don’t know how you do it every day. I hope you have an amazing chiropractor or acupuncturist or something.
BTW, freaking awesome post! You make me want to adopt a child who experiences disability.
Thanks, Miss Mary (I like the new name!).
There’s a woman I know who’s a syndrome mom of an older daughter – maybe in her 20s? Her daughter is on the severer side of the syndrome (which, as I’ve indicated, is no walk in the park), and is blind-deaf (not very usual in the syndrome – actually my kid is supposed to be blind, but mysteriously is not!). I found out recently the mom had adopted her at the age of nine. This mom is the most cheerful, indomitable person. I think she works with adults with I/DD too. She absolutely blows me away.
I threw out the idea of adopting a child with Down syndrome, and my husband looked at me as if I had just grown a second head.
So far, my husband has only one son-related back injury, and I haven’t had any. The kid keeps growing and growing and growing, though. He really has failed to fail to thrive.
I’ll read the book, thanks! I worry about the sib issue in a special way for my oldest. It would be one thing if he had an easy-going “hey, it’s all good” kind of personality. But he’s definitely an intense, self-conscious, brooding, ruminating type (Morrissey came on the radio the other day, and he said, “I love this!” which was so totally him it was hilarious!). I think he’s seriously an awesome amazing child, and I love my mini-tortured artist, but it will be harder on him than if he had a different personality type.
Do you read The Riot!? I was reading their e-newsletter today and thought of our brief conversation here. Thought I would share a few links, if you are not already aware of them…
No never heard of it! I’ll check it out.
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