I’m writing this as homage of sorts to some beautiful blog posts I’ve read recently about what it’s really like to raise a child with special needs.
I don’t intend this post in any way to be a mockery of the heart-rending and inspiring truths these writers have exposed. In fact, I am awed by their honesty and validated by their feelings. I feel less alone.
So think of this post as a compliment to those, Modern Messy style – a little bit funny (here’s hoping), a lot self-deprecating, and a tiny bit educational. Keep in mind that the opinions expressed herein are solely my own, and if I say “we,” I mean that in the royal sense, as in “me.” If you agree with me, or especially if you don’t, I hope you’ll leave a comment. What do you wish other parents knew about you?
1) I’m Really Just a “Regular” Parent. Just because I have a kid with Down syndrome – now age 3 ½ — doesn’t make me any more special than you. I don’t want people to think there has to be this “us” and “them” divide – people with a special needs child and those without.
Being a good parent is hard on anyone, and joyous for everyone. I’m happy to hear about your child’s accomplishments. Sure, I may have pangs of envy because my son can’t do the things your child can do, but trust me, I’ll get over it, and it’s nothing to feel sheepish about. After all, I am reminded of his limitations all the time, because he has a typically developing twin sister as well as a terrific big sister. I feel like for the most part, I’ve been able to come to this place where I judge him on his own terms, and I am wildly happy with what he has accomplished, even envy-proof most days. (Just don’t catch me on a bad day!)
I’d love to know how parents of an only child with special needs feel about this – does it bother you when friends talk about their child’s milestones, even when they are doing so in a sensitive fashion? I feel like my girls are my buffer against those pangs of jealousy – between them and my son, I get to see all sides of the development arc, all the highs and lows. If you are the parent of an only child who is special and feel like sharing about this, leave a comment below. If you think I’m a jerk for even mentioning this, you can let me know that too.
2) I Treasure All My Friends, Especially Those Who Don’t Have a Child With Special Needs but Like Hearing About Mine.
I’ve been blessed with amazing friends and neighbors who not only tell me how adorable and funny my son is (and they’re right, of course), but help me keep him entertained and look out for him. More than that, they don’t seem to mind hearing some of the gorier details about being his mom, and they aren’t afraid to ask questions. I love that. I hope I’ll always be so lucky. It’s what everyone should expect from their friends, but it’s not always what they get.
To return the favor, I offer this piece of advice to parents of children with special challenges, especially the newly born or just diagnosed: Let’s always remember to talk first with our friends about the things we have in common rather than the things we don’t. (See item Number 1 in this article here). If there is going to be a divide created between “us” and “them,” let it not be our emotions that create it. Give people the benefit of the doubt, and if they can’t handle being in your life or hearing about your child, just let them go.
And I’m not saying don’t talk about our kids’ challenges and medical issues, for instance. I’m just saying let’s engage friends and neighbors with conversation we can all participate in. Of course, this doesn’t apply when speaking with other parents who have a special child, which is why we need those friendships so much.
You never know what challenges your “regular” friends might be facing, though. One of my most startling discoveries has been that almost everyone I know has at least one child facing some sort of problem, be it a health issue or a behavioral or social challenge. Vision problems that come with eye patches; a severe allergy; adjustment issues in school; speech delays; hearing problems; coordination and gait problems; attention problems; behavior problems; sleep disturbances that torture the entire family; jealousy issues, the list could go on and on – it’s amazing any of us have made it to adulthood.
What I’m saying is that your friends may need you as much as you need them because they know they’ll have a sympathetic ear. Just because their kids’ problems don’t involve an IEP doesn’t mean they are any less taxing on the family.
3) I Am Unlikely to Finish a Conversation With You Anytime in the Next 5 Years.
This is for all the friendly ladies and gentlemen whom I’ve literally run away from in mid-sentence over these past few years. It’s been nice half-knowing you.
If we are at a party or public gathering spot together, chances are you will see the back of me more than the front. For I will have to chase my son, who thinks it’s hilarious to just start running for the first open space he sees, especially if there is a street with cars nearby. Or, if he is safely enclosed, he will probably be trying to eat off someone else’s plate, drink someone else’s drink, touch something hot, put something totally inappropriate in his mouth, lick a dog, or push or hug a small child a bit TOO hard (it is done with much love but little awareness of his own strength).
If you are speaking to me on the telephone, I will have to stop before being able to complete any thought because he (or his sisters) will be busy with what I like the call the Behavior Trifecta, or Triple D: something that is either dangerous, disgusting or destructive. At any given point in time, one of my children is doing something/some things from this delightful category. It’s not always him, but quite often he is the worst offender.
4) My Car is a Holy Mess. You try keeping your car clean when you have a child who thinks “put that down” means “fling it hard upon the floor,” where the object can roll out of reach, spill, break, become twisted in the car door, disintegrate, etc. Over the three short years of his life, he has also managed to perfect the art of removing his shoes, socks, and braces while we drive. (The braces are ankle-high supports that prevent his flat feet from pronating inward.)
Now he can do all that and fling each item in a different direction in less than one minute. He’s tricky though – he fools you into thinking he won’t do it every time, lulling you into this false sense of security and making you think you can actually put on his shoes and socks before leaving the house. Just when you think you’ve got it down, you arrive at school dropoff about 45 seconds before the doors close, and look back to see 10 little piggy toes wiggling happily at you. There are no socks in sight, of course. Why would he make anything easy for you?
Not to mention he is also a holy mess when it comes to eating – goldfish crackers and raisins fit very well into that little space in the car seat where the buckle between the legs begins (he still needs a five-point harness in his carseat, the squirmy thing). They also crumble nicely and line the seams of the car seat quite easily.
And for all of you out there – yes you, Captain Obvious – who say, well, just don’t feed them in the car, I have only one thing to say: you must live on a commune because here in the suburbs, our cars are our second homes. Isn’t that why mine is full of unmatched socks, empty coffee mugs, and The New Yorker magazines I never finish reading? (Please refer to Number 3 above and note that I am also unlikely to finish a book or magazine article or see an entire movie anytime in the next five years either. So, you probably wouldn’t have had much of a conversation with me anyway.)
Oh, and the last reason my car is a mess? (It has nothing to do with my lack of organizational skills, of course.) He is like the Cookie Monster, but with books. I will sit him happily in his car seat, reading a book. One minute later, he will be “finished” reading it, and I’ll hear it clomp onto the floor. He’ll then say “Book, book, book,” getting higher and higher pitched until I give him another book. This process will repeat until I literally run out of books to hand over to him. One time we must have gone through 20. We were only in the car 10 minutes. I have since gotten things more under control. But he still loves to throw or kick books upon the floor when he is finished with them.
5) My Diaper Disasters Are Worse Than Yours. Really. Don’t even try to complain about how your kid is not potty training well at age 2 ½ or how your precious little baby loves to remove his stinky diaper in his crib. Wait until you’ve got a nearly 40-pound, nearly 4-year-old who loves to eat yet is still eons away from being potty trained.
Yeah, there’s a reason we get kids out of diapers before they (and their insides) get too big.
6) I Have a Great House for Playdates. I love it when parents of new friends come over and sheepishly apologize in advance for the havoc their kid might create. “Oh, and if little Johnny accidentally pees his pants, just call me.” Or: “If Maggie starts not wanting to share, please let me know and I’ll talk to her.” Seriously, people, this is all you’ve got, pee-pee pants and trouble sharing? Pshaw, been there, done that. Try me with biting, clonking on the head, throwing sand in eyes, screaming at top of lungs (3 children at a time), swinging from a curtain, covering a crib in poop, messing with so much paint there are paint footprints all over the floor, short-circuiting an electrical outlet and cutting off half their own hair.
Now, you may not want to come over my house after reading all that, but if you still do, here are a few tips. I have three kids. One has Down syndrome and thinks he’s outrageously funny. Two of them (including him) are preschool-age twins and act like little gremlins when they are together, creating new mischief every day. The oldest is 6 ½, so I’ve been doing this for a few years now. I am certified in CPR and First Aid. I grew up babysitting children, including a family of 6 kids, a family of triplets, and a child with severe mental and emotional problems. I will not say I’ve seen it all, for certainly I have not, but I’ve seen enough to know that your kid’s sensory diet or hatred of Barbie dolls is not going to ruin my day.
So don’t worry! We will figure out how to have a great time no matter what; I will adapt to whatever they need. Gee, in another lifetime I would have been a great special education teacher. You know, a lifetime where God remembered to give me some patience, insert a port for a caffeine IV and made me deaf in one ear so as to blunt the effect of whining.
7) I Am Neither Mary *!*!ing Poppins nor Martha $*$*ing Stewart.
For all you new readers out there, I am not one of those new-wave mommy bloggers who are both technologically savvy and domestic goddesses – in fact, I am neither. I will not be taking any museum-quality pictures of the food I am about to consume. I will never knit, purl, stitch, mend or even iron. I am not crafty, and though I do own a glue gun I still am not sure what to do with it. So stand down, all you beautiful modern ladies who have come so far through all the waves of feminism that you can run a corporate webinar, help your children build a totally cool tree fort AND make homemade jam in the same weekend. You win, really. I cannot compete.
I’m just a Generation Xer who spent most of her life NOT learning how to cook and clean because you know, I was not going to have to do those things. Who did I think would? They were supposed to do themselves, or my husband was supposed to do it. I will say, I got lucky in that my husband is not only a good cook, but enjoys cooking (and if it were a contest, he’d win). But you know, he has a fulltime job, and sometimes he’s tired, and the weekend is only two days long and so I have to figure out how to feed everyone on those other five days.
All this is a long way of saying that even though I love being a mom, sometimes I just get worn down by the endless cycle of it all and I don’t feel like being cheery or keeping the house nice and cooking a homemade meal. I just want to yell at the kids and then call someone to deliver food to the house. I do the yelling a lot less than I used to as my kids are getting older and our life lessons are finally sinking in. The laziness about dinner has been harder to conquer; it’s just a really rough time of day. Sound familiar?
I wrote a post a while back about how when you have a child with special needs, you have to do things the hard way and sometimes become the things you dread, like a winsome and undaunted nanny or an organizational wizard around the house, just so your child can succeed better in life. Children with special needs really thrive on order and routine, and they need lots of visual cues to learn where things go and what to do next. So a big mess is not very helpful. Nor is grumpiness, because what they really love is for you to speak in sing-songs. Yay.
I think that’s all been good for me, because it’s definitely brought me out of my comfort zone. But just in case you see me gritting my teeth when I’m out walking with my kids, you’ll know why.
Oh, and if you are a PTA mom, please try not to assign me the craft projects. I love to help out, but cannot draw a straight line to save my life. Don’t try to force me to decide between card stock and construction paper, or I may finally figure out a use for that glue gun.
8) I’ve Been Exhausted for Almost Four Years. I know, there weren’t supposed to be eight of these, but after I wrote the rest I thought it sounded a little too cheerful. And you know how I hate that. Basically, I’ve been getting by on the absolute bare minimum of sleep each night since the twins arrived about 3 ½ years ago. And all my kids are good sleepers, so it’s not technically their fault.
But I just cannot seem to accomplish everything I need to in a day without staying up until at least midnight or 1 a.m. Clearly, I need to get my act together. Then I am up at 6:30 a.m. to pack lunches and prepare clothes and breakfast. All three kids go to a different school with no buses, so there is lots of driving around. But more than that, I just get tired of the constant disciplining, the repeating myself, the frustration at my son’s habits – like hitting, banging and licking – that seem unbreakable. His twin sis is no picnic in the behavior department either.
I am stressed out, as is my husband I’m sure, thinking about all the money we have to spend on doctors, therapists, braces, and activities for him and educational conferences and books for us just to keep him on a good path. We are lucky we have good insurance to help us do this; others are not so fortunate. Oh yeah, and then when our son hits midlife, he will most likely develop Alzheimer’s disease or similar brain degeneration. So we also have to pay attention to drug therapies now in the works to stave off some of these declines. Though it is wonderful to live in an era when scientists are devoting efforts to this, it still just seems overwhelming.
So if you see me on the street looking dazed and ragged, please understand I still feel young at heart, even though I’ve aged 10 years in the span of three. And please offer me your best household organizational tip – whether it be for streamlining bedtime, dinner, or morning routine, or something to help me organize all my papers! Comment below.