7 Things About Me You Might Like to Know. Or Not.

17 May

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.

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30 Responses to “7 Things About Me You Might Like to Know. Or Not.”

  1. Matthew Hennessey May 17, 2012 at 10:36 am #

    A lot for us to relate to here, Vicki. Our Magdalena is a runner, so we never get to enjoy parties either, or soccer games, or … much of anything really. She’s a thrower, too. And a head-bonker. But we love her! I know you don’t want there to be “us” and “them” but it sure is nice to hear from someone else who knows what it’s like.

    • modernmessy May 17, 2012 at 11:10 am #

      Matthew, I’m glad you can relate! At least our kids are keeping us active, right? Good exercise. Thanks for writing!

  2. Cathy Bassiri May 17, 2012 at 10:39 am #

    Vic- You’re an amazing mother and could have taken up comedy as a second career too (in addition to being a special ed teacher)! I was laughing and crying at the same time. Love you…..

    • modernmessy May 17, 2012 at 11:10 am #

      Cath: thanks so much for saying that! I’m glad to give you a laugh; thanks for always being a supporter. Love you too.

  3. Wendy May 17, 2012 at 10:46 am #

    Vicki, you have to remember that unlike you, Martha Stewart has a sizable production team behind her to brainstorm and implement ideas. All the things you do every day, frustrating though they may be, are helping to shape all your kids into the wonderful people they will become. They are all amazing, and it’s in no small part due to the fact they know they’re loved.

    • modernmessy May 17, 2012 at 11:11 am #

      Wendy, a good reminder indeed. Sometimes I wonder if they know about the being loved part (mad mommy can be mean mommy!) but I guess overall they have it pretty good. Thanks for your support!

  4. Janie May 17, 2012 at 4:37 pm #

    Vicki,
    Your hands are certainly full, but you always find time to entertain and enlighten us. The days are long and the nights short, but time with kids passes really quickly, so you grab the joy whereever you can.

    • modernmessy May 17, 2012 at 6:30 pm #

      Janie, I’m trying to hold onto these moments; I can already see how quickly it passes.

  5. Tara May 17, 2012 at 11:23 pm #

    Just want to send you a big hug. You are one awesome mom 🙂 I love your sense of humor.

    • modernmessy May 18, 2012 at 9:17 am #

      Thanks, Tara! Hug right back at you. I’m so glad that we’re still connected through all these miles. Most days I don’t feel at all like an awesome mom, but thank you for the encouragement — you’re pretty impressive yourself.

  6. PsychoJenic May 21, 2012 at 9:10 am #

    This is just fabulous and has totally filled in some serious blanks in those lists that I could not put my finger on! (I blame exhasution). Great job!

    Thanks for participating in the T-21 Blog Hop!

    • modernmessy May 21, 2012 at 9:16 am #

      Thanks for hosting the blog hop! I did not have the brain power to figure out how to make it work on my blog last night. But today I am spreading the word on Facebook and our local online support group, and later in a blog post, about your amazing history of Down syndrome piece on famous families — so far, the response has been fabulous. I am seriously in awe of the amount of time that must have taken. You should get paid somewhere for writing that one.

  7. Linda Bernal May 21, 2012 at 10:25 am #

    We have our one and only daughter, Diana, who is 8 and who has DS. Just to answer your question about that~~~ at home I forget she is even “different” and just gush over all her accomplishments (reading started this year–finally!), even little things like her thinking through something we say, and given a great response!! My husband and I will look at her and say to each other, “She is so smart!!”

    Now, out in the world we mostly feel the same, but there are times when she will “act” different, by doing something she never has done at home, and no one at school has said she does that. Then I kind of panic and don’t know quite how to get her out of this “mood.” I feel a little uneasy (because it hits me like bricks and I haven’t had an opportunity to practice dealing with this particular behavior). She will finally get back to her normal self and we move on, but I mainly don’t want people who do not understand to think this is how it is–because mostly it is not!

    I think she could benefit from having a brother or sister, so she would learn the little things about a relationship with a peer. But overall she is doing so well, and we are so proud of her!

    • modernmessy May 21, 2012 at 10:55 am #

      Linda: Thank you so much for replying to this question! I loved reading about your daughter, Diana — she sounds so lovely and clearly she has dedicated and loving parents.

      I’ve had those experiences too, where our son will act out so suddenly and I don’t know how to respond; kids are quick, they sure keep us on our toes. I’m so glad to hear that most of the time Diana is a delight; our little T21 cuties can have some challenging behavior sometimes.

      It sounds like she will continue to thrive and I’ll bet she’ll be a good friend too, so she’ll have those peer experiences you mention. Glad to have you as a reader!

  8. Maryellen May 28, 2012 at 7:01 pm #

    As always, I enjoyed your blog. You truly are an amazing mom to three amazing children.

    • modernmessy May 28, 2012 at 10:12 pm #

      Thanks for your support, Maryellen! I think any good mom — which is all the moms I know — is a pretty amazing person! Glad to have you as a reader.

  9. Ursula June 24, 2012 at 8:21 pm #

    Hi Vicki, Just writing to say how often No. 3 happens to me. I think of this post, and that one, SO many times over the course of a week. Hope all is well. XOXO Ursula

    • modernmessy June 24, 2012 at 8:47 pm #

      Hi Ursula — glad you can identify…I know most moms feel this way, but I think it’s heightened for us with kiddos who do not know how to sit still for 5 seconds, even when they are almost “big kids.”

  10. yr secret admirer :D September 14, 2012 at 12:06 pm #

    3 best org tips: 1 – write a standard shopping list based on WHAT YOU ACTUALLY HAVE IN YOUR CUPBOARDS AND FRIDGE RIGHT NOW and keep it on your computer. Organize it by store. DO NOT theorize – look at what you are ACTUALLY using. 2 – write down what you ACTUALLY ate over the course of one week, and what you used to make it. If you are still alive at the end of that week, it was successful and you could repeat it, some other week. If you do this for just four weeks, you have a month of meals and shopping lists, like some sort of weird homemaking guru, but you didn’t do anything but journal. 3 – AT LEAST ONE DAY PER WEEK, GO TO SLEEP WHEN YOUR KIDS DO.

    • modernmessy September 14, 2012 at 12:54 pm #

      Who are you?? I love your tips. They make total sense. Now let’s see if I can do it. I will let you know what happens. Thanks for actually answering my question.

      • yr secret admirer :D October 10, 2012 at 8:19 am #

        Nu, did you journal? I have been off-schedule following my own tips!!!! I think it is much cooler to be a secret admirer, but since you ask, it’s yr cousin, otherwise known as Loulou Firedogs 😀 I hope you are holding up well and I really want other people to write tips, too…I am catching up on blog reading and finding yours so awesome…

      • modernmessy October 10, 2012 at 10:24 pm #

        YOU are awesome! I should have known. You can still comment as my secret admirer. Makes me sound mysterious. I have not journaled, but I have tried to be more realistic about what I buy. AND I have definitely been following your other advice to go to bed when your kids do once a week (or twice). Amazing how much that helps! You’re a genius, Loulou. I miss you. Thanks for reading.

  11. DaytoDayMama January 10, 2013 at 1:49 am #

    I know this is an older post but I’m catching up. I can relate to SO MANY of those points! Sleep? It’s for sissies! The wee hours are for folding laundry and cleaning food crust off of high chairs aren’t they?

    • modernmessy January 10, 2013 at 11:02 am #

      Love how you put that, yes! Glad you can relate — but I recently had a wake-up call with lack of sleep; got a bout of pneumonia and it knocked me for a loop for weeks! Not good, so rest up, momma. The food crust will still be there tomorrow 🙂

  12. sharon ellis January 14, 2013 at 12:10 pm #

    Hello Victoria, loved #’s 3, 4 and 8. I second the motion. Incredible you still have the energy to keep up a blog. Hope we can meet up at the next MNO.

    Sharon

    • modernmessy January 14, 2013 at 10:00 pm #

      Sharon, thanks so much for reading and glad you enjoyed it! Actually, blogging gives me energy. I love to write and connect with other parents so I feel less alone and less crazy. This is a real labor of love and wouldn’t be any fun without readers like you:)

  13. Jennifer Stavely January 28, 2013 at 5:52 pm #

    OMG..Thank Goodness I found this Blog. I have only skimmed this one post, but I am so relieved. I have been perusing DS Mom blogs for the past few days, and feeling real bad about not making designer food and talking pictures of it (HATE that), having a baby book for neither child, not throwing elaborate pareties that seem fit for a celebrity, rather than a 5 year old, etc. I can’t cook, I was in a rock band for years and never learned any domestic stuff, becasue, yeah, I was a Gen Xer and thought I just wouldn’t have to learn for some reason — that was for squares. I now have an 18 month old with DS, who was a total suprise (thanks not-woring birth control pill, at 40 I felt totally ready for *another* baby (being sarcastic here, if the internet doesn’t convery that). I have an 8 year old as wel, who is wonderful most of the time, but also acts like a teenager sometimes, bewildering me how she could be that way at 8. The Cosmos are getting back at me for being such a Pain in the Ass to my folks in teen-land I guess.

    But anyway, sorry to go off on a me*me*me* tangent, just so happy I found a blog of woman I could relate to. Messy Car, Coke Zero, Frozen Chicken Nuggets, Still adjusting to DS life and worrying about my babies in the big, bad world, non-up-to-date @ music, reality show watching, nap-loving, hopital visiting. Oh, and byebye “career” (at least for now).

    I am glad I am not the only “Perfect Mom” let alone “Perfect Mom of a child with DS and others”….I read one post, on another blog where the chick replied to a reader’s question — “How do you do it” and “How do you find the time” and she was all “After Bed-Time, and I just do it becasue I love my kid so much.” Frown. I apologize for any typos and grammar mistakes…I *used* to be very picky about that. Anyway, Bless you for keeping it real, and you def. have a fan. After “dinner” I will try and actually read your whole post as well as others.

    • modernmessy January 28, 2013 at 9:43 pm #

      Wow, Jennifer, your comment made my night! This is the best validation I could ask for — that someone feels better after reading my blog 🙂 Thank YOU so much! I also feel imminently cooler just having a fan who was in a rock band — yeah! Don’t worry, we love our kids too, but that doesn’t mean we’ll stay up all night designing elaborate therapy toys for them (not that there’s anything wrong with that — I know some actual nice moms who do that without making others feel bad about it). The best therapy is just a natural part of daily life, at least that’s what my therapists always told me. Please poke around the blog and the list of web sites along the side. Also, thanks for becoming a fan of my Page on Facebook!!! I try to post informative articles and links about raising a child with special needs on there, so if you’re looking for meaty “info” please check there. Welcome to my Messy world! If you ever want to ask anything privately, you can actually do so in a comment b/c I have to approve all my comments first, and if a reader were to ask me something personal I could refrain from publishing it. Good Night! — Vicki

  14. Caren January 27, 2015 at 7:03 pm #

    I really couldn’t think what to put for my 7 things about me , I’m good at talking but not writing or spelling , Yours is the first I found I’m so shocked at how much our life’s are alike I have a son age 6 7 in March and twins age three they were born at 29 weeks we were told one twin would have down’s 18 we were advised to terminate the pregnancy which we would lose both we were shocked still are they asked that of us . When he was born he passed away three times he doesn’t have down’s but not sure of underline problems of yet he has club foot he use’s one side of his body less than the other he bites runs to danger head buts and licks everyone but he is so funny everyone loves him he strips about 7 times a day still wears nappys doesn’t have a clue when he needs to go puts poo on walls carpets stands in it feel like I can’t take my eyes of him him and his two brothers fight a lot and argue but I wouldn’t have it any other way your a great person Thankyou for sharing xxxxx

    • modernmessy January 27, 2015 at 9:47 pm #

      Thank you for writing in! I love that you found my blog. Your life sounds pretty zany, but very fun. You sound like you have a great sense of humor to carry you though. What an amazing story about your son and your twins, wow. As for his behaviors, I especially love the “runs to danger” and “licks everyone.” We can identify with those 🙂 Thank you again and hope you’ll keep reading!

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