That Time I Defaced My Son's Developmental Questionnaire

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A few weeks back I realized that my son never had his 2-year-old well check. Whoops. Somewhere in the chaos of sleep studies and trach removal and clinic appointments, I just plain forgot to schedule it. But since practicing a better-late-than-never parenting philosophy seems to be working out so far, I went ahead and made the appointment (nine months late) to coincide with his little sister’s 1-month checkup.

Two birds. One stone. No problem.

Except for one little thing – one teeny problem I’d completely forgotten about: the Ages & Stages Questionnaire (or “ASQ” if you’re short on time).

A photo of the ASQ-3 24 Month Questionnaire

Some of you may remember my last run in with this little monsterbut for those of you who don’t, let me enlighten you. The ASQ is given to parents to complete before their little one’s well check. It’s a screening tool designed to identify and pinpoint developmental delays in children. In other words (for you parents of children with special needs) it’s a soulless torture device made up of questions that can only be described as highly presumptuous and borderline absurd.

Pardon my French, but this test is a fart face of the highest caliber.

The questions make it impossible to ignore the things my child can’t do. In fact, it was created to highlight each and every can’t while assuming so many cans that just don’t apply to us. For example, it doesn’t say, “Can your child jump?” Instead, it says, “When your child jumps, does he lift both feet off the ground?” What a jerk, amiright?

A photo of the author's son in a wheelchair with the thought bubble, "Do wheelies count?"

I’ll admit, the form is extremely helpful for catching delays in typically developing children but, when your child’s delays are already identified, the ASQ is mainly helpful for crushing your spirit and leaving you to perish in a steaming puddle of your own tears. If your positive outlook is like a slug, then the ASQ is like a pound of table salt. It melts away your good feelings until they’re nothing but a sticky mess on the pavement grossing out your mom (at least that’s how it worked when I was a kid).

Which brings me to last week when the friendly receptionist handed me my son’s well check forms. Tucked inside was the dreaded developmental questionnaire, which I shoved to the bottom of the stack and actively ignored. Truth be told, I’m pretty sure I could have left it blank. Our doctor would understand and besides, there wasn’t much it could tell us that we didn’t already know. I could have ignored it completely. I considered doing just that. But then I got to thinking…

I thought about all those ridiculous questions. About gross motor and fine motor and jumping and stringing pasta necklaces. I thought about my son and why all this stuff is so important and why sometimes, maybe, it isn’t. I thought about it until I got tickled and then my tickles turned into giggles and my giggles turned into big maniacal chuckles.

What if I didn’t take this thing so seriously?

What if I laughed in the face of all those nevers and can’ts and shoulds?

What if, instead of letting the ASQ control my feelings, I controlled the ASQ?

So, after the little ones were (glory of glories) both asleep for the night, I grabbed a pen, sat down at the table, and got to work.

Suck a lemon, ASQ. I‘m going to make you fun if it kills me.
(And, yes, the following is indeed the copy I turned in at the doctor’s office.)

Looks like these kids need a makeover…

A photo of the Ages & Stages Questionnaire

That’s more like it…

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Image of a child sitting in a drawn-on wheelchair holding a sign that says "That's how I roll"

Good question…

Note added to ASQ: "We have never seen him walk, run, or climb, so I'm not sure. He has chosen to abstain from these activities as a form of protest against his mother's long-time ban on nose picking."

Note added to ASQ: He uses teleportation (answering the question: "If your child wants something she cannot reach, does she find a chair or box to stand on to reach it (for example, to get a toy on a counter or to 'help' you in the kitchen)?"

And of course, his very own addendum (just like last time). Because the other questions are a grossly inadequate representation of his greatness…

"Addendum for Simeon," a list written on the ASQ

I own you, ASQ. Eat. My. Shorts.

Special needs or not, I think everyone deserves their own specialized questionnaire. So tell me parents, what questions would be on your kid’s addendum? Are they a phenomenal dancer? An expert ice-cream sampler? A wheelie-popping-daredevil? (Or, if you’re not a parent, what questions would be on an addendum made specifically for you?)

This post originally appeared on What Do You Do, Dear?

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To the Mother Crying Over Her Baby's Spina Bifida Diagnosis

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Dear me on diagnosis day,

The ultrasound technician, the maternal fetal specialist and the neurosurgeon finally all exited the room, and I see you break down sobbing, alone with your husband. The floodgates have been reopened.

After seeing three different doctors at three separate practices, each with their own ultrasounds and testing, you’ve been given three different spina bifida diagnoses for your unborn daughter, each progressively worse. This one, the third and final diagnosis, brought with it a good chance that your daughter would never walk. I know you’re absolutely heartbroken. You spend the remainder of your pregnancy crying. Every day, you cry. You mourn for the healthy, happy, perfect baby girl you’d always wanted but would never have. You dread her differences that will make her stand out from other children. You fear she won’t get to do all the things other people will do. You grieve for her additional struggles in life. And you’re overwhelmed with all the aspects of care she might require.

Looking back, I see you, a heartbroken mother whose soul is being crushed by this diagnosis. Everything you’d envisioned for the future is changed, and coping with that struggle is often more than you can bear.

Come here, let’s leave this hospital room. Let me show you your daughter now, as a 7-month-old.

baby with spina bifida

She’s absolutely beautiful, isn’t she? Look how she smiles in sheer delight just at the sight of you. That smile illuminates the whole house with happiness. She’s perfect in every way. She’s completely, without a doubt, the healthy, happy, perfect baby girl you’ve always dreamed of. She is the best thing to ever happen to you. There’s no more need to cry. There’s no need to mourn your daughter’s future life. She will be fine. She is fine. You will be fine, too. Her life will be just as fulfilling and beautiful as you’d envisioned for her. This diagnosis is less scary in person than it is on paper. She will have some struggles, but it’s nothing you can’t handle, I promise.

As I leave you in the hospital room, wipe your tears. Please, don’t spend another night crying. Celebrate your pregnancy and get excited for the arrival of your perfect daughter. I can’t wait for you to hold her. And she can’t wait to meet you.

mom holding baby

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This Kid's Mister Rogers Costume Is Definitely the Cutest One in the Neighborhood

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This. Costume. Is. Awesome.

OK, we may be a little biased — after all, one of our Mighty contributors, Mary Evelyn Smith, made it. But seriously, it’s stellar.

Check out the photos below of Simeon decked out as Mister Rogers. His wheelchair only makes the costume better.

“Let me tell you: this kid digs Fred Rogers,” Smith writes on her blog, “What Do You Do, Dear?” “He requests an episode each night after dinner and regularly begs us to serenade him with tunes from the show.”

You’re definitely the coolest kid in the neighborhood, Simeon.

collage of boy dressed up in a mister rogers costume

father pushes around boy in his mister rogers costume

Read how Smith made Simeon’s costume and visit her blog for more awesome writing.

Mary Evelyn Smith on The Mighty:
On Learning My Second Child Can Move Her Legs
When a Little Girl Felt Sorry for My Son
If I Could Have My Son Without His Disability, Would I?

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John Mellencamp Opens Up About Finding the Man Responsible for Saving His Life

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Above is proof that the challenges we face in life can make us stronger.

John Mellencamp had no idea he was born with spina bifida until he discovered a scar on the back of his neck around the age of 9 or 10, according to CBS News. As it turned out, the legendary performer from Seymour, Indiana, was given an experimental operation as an infant that saved his life at a time when most babies born with the birth defect didn’t survive.

The 18-hour-long procedure that took place in 1951 was one of three operations on babies with spina bifida at Riley Hospital for Children in Indianapolis. Mellencamp is the only survivor of the three.

The unlikely success of his operation left Mellencamp with a feeling of luck that’s followed him his whole life, according to his interview in Men’s Journal. He told the magazine:

My grandmother told me for my entire life — everyday, “John, you’re the luckiest boy in the world.” And when you hear that everyday from somebody you actually start to believe it, which made me adventurous, which made me not afraid to try things, which made me not care about stopping myself from doing things that people said you shouldn’t be doing.

Just last month, Mellencamp met the neurosurgeon who performed the pioneering operation on him nearly 63 years ago, according to CBS News. Dr. Robert Heimburger, 97, met him at the hospital where the surgery took place.

Mellencamp recently announced an upcoming tour for his new album “Plain Spoken,” according to his website.  The 80-show tour, beginning in January 2015, will culminate in a performance at Indianapolis’s Bankers Life Fieldhouse on August 4th. A portion of the proceeds from this show will be donated to the Riley Children’s Foundation, which supports the Hospital for Children where the singer’s surgery took place over six decades ago.

Check out Mellencamp’s interview with CBS above. 

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Kids With Spina Bifida Shut Down Hurtful Statements With the Ultimate Dance Party

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Spina bifida limits our potential.”

“We have poor quality of life.”

“We suffer daily.”

A group of parents and their kids from the “Take That Spina Bifida!” Facebook community are out to prove these statements wrong in the awesome video below, where they all “Shake It Off” to Taylor Swift’s new single.

In their ultimate dance party it’s easy to see there’s no limit to their potential, the quality of life is high and the only thing they suffer from is a case of happy feet.

Shake it off. Like us on Facebook.

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Maybe I Caused My Son's Birth Defect, Maybe I Didn’t. Here’s Why It Doesn't Matter.

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October is Spina Bifida Awareness Month, meaning that everyone and their mom is up in arms about prevention. If you follow any spina bifida-affiliated organizations, then you’re totally going to get an earful this month about folic acid and how SB is totes preventable if you just take folic acid for the love of Christ. (Sara from the blog Ernie Bufflo does an excellent job of explaining why that isn’t always the case and how SB prevention often gets in the way of serving the people who are already here.)

I don’t talk much about prevention on my blog, because it’s totally irrelevant to us and a majority of the people who read this. Like Sara said, we’ve got SB, and it’s not going anywhere. It’s part of who my son, Henry, is, and no amount of folic acid is going to change that. It’s not really something I talk about, because it’s not really something that affects us now. But I’ll talk about it today.

One thing that saddens me greatly during October (and, to be honest, every other month, but particularly October because the push for awareness and prevention is so high) is the scores of mothers on our SB support groups who admit to feeling haunted: “Could I have prevented this?” they ask. “Was it my

fault because I waited to take prenatal vitamins once I found out I was pregnant, instead of before?” My friend Mary Evelyn echoes this, and she wrote a post this morning about folic acid and guilt that ought to be mandatory reading for every newly-diagnosed parent.

My heart goes out to these women completely, because I’m among their ranks — Did I cause this? Did I not take enough folic acid? Truthfully, I don’t think about it often, but I do think about it some. And I’ll admit that while most of the time it’s not something I concern myself with, during my worst moments (and we all have those, right? Those wow-I-suck-I’m-a-terrible-mother-and-human-being moments?) I believe beyond a shadow of a doubt that I’m the one who caused his defect:

  • We waited only a year between pregnancies, and I was breastfeeding my daughter, June, when we conceived. (Who knows — maybe she sucked all the nutrition out of me?)
  • I’m chronically anemic. I have been my entire life, which goes hand-in-hand with folate deficiency (which I didn’t know at the time).
  • I ate pretty much nothing but baked potatoes and Panera Bread’s soup during my first trimester. (But I’m gonna go ahead and blame the baby on this one. If he wanted me to eat tons of folate-rich spinach, he shouldn’t have made me throw up every time I ate anything.)
  • Here’s something that really haunts me — something I’ve come to accept and make my peace with, though it still lashes out at me in my worst moments. The minute I found out I was pregnant with Henry, I remembered how agonized I was after June’s delivery. During the pushing stage, I think I pulled just about every muscle in my body trying to get her out, and I was so woefully out of shape it took me weeks to recover from childbirth. So right after my positive pregnancy test, I went out every morning with June and took her for a walk in the stroller. In mid-July. In 90-degree weather. It was hot as balls, but I thought I was getting healthy for him. I knew vaguely that high body temperatures (hyperthermia) increase your risk of neural tube defects like spina bifida, but I took that to mean no hot showers or electric blankets, which I stayed away from religiously. I didn’t think that meant I couldn’t exercise. I thought I was doing a good thing.

Does that cover it? The millions of ways I could have given my son spina bifida? I took prenatals, by the way. I even took a folic acid supplement — more than the standard recommended dose. And another thing I loved to eat when I was pregnant was Total cereal — which is fortified with folate and has 100 percent of the recommended dose. So who knows — maybe it wasn’t folate deficiency. Maybe I didn’t wait long enough between pregnancies. Maybe it was the fact that my dumb ass went out every single morning during my first trimester in extreme heat determined to get in shape for his delivery, raising my body temperature to potentially unsafe levels.

Maybe I caused it. Maybe it was my fault. Maybe. I’ll never know.

Now let me tell you why none of that matters.

Being a mother has always been of utmost importance to me. We waited about five seconds after we were married to start trying to get pregnant, and four months later we were pregnant with June. When June was just a year old, we both got a strong urge to try again for another. We were in a good place financially — paying off our debts, saving a good amount. My husband, Lou, had a steady job. June was an incredibly easy baby, who we thought could benefit from having a sibling. There was nothing stopping us. So we tried again for Henry.

(Only one other time have I ever heard this small nagging voice in my ear. In college, Lou and I were spending a lot of time together, getting to know each other but not yet dating. I remember sitting in a political science class one day and hearing, out of the blue, someone telling me that if you date this person, he’ll be the last person you ever date. Writing that now, it seems creepy, though, like my husband was going to murder me or something.)The funny thing about trying for Henry was that I knew I would be having Henry. Henry was the only baby name we could agree on, boy or girl, and I strongly suspected that when we got pregnant, we’d be having a boy (boys run in the family, on both sides). Right after June’s birthday (at the end of June), I heard a small voice in my ear. You’re fertile now, it said. If you want to get pregnant this month, you’re running out of time to try. So we tried.

photo-414

I tell you, the minute Henry was conceived, I knew we were pregnant. I knew it took on the very first try. And for weeks afterward, I took pregnancy test after pregnancy test, knowing we had conceived him, but not getting a positive result. Finally, on July 17, we got one. Pregnant. On the first try. With Henry. Bam. Henry, whose namesake we now know, is the patron saint of disabled people.

My point is this: I was always meant to have this child. He was always Henry, and he was always mine, which takes the sting out a little bit when I think of maybe how I could have caused his defect. Whether I caused it or whether it was just a totally random happenstance, it doesn’t really matter to me anymore. Because he was always Henry. He’s always had a special purpose. He was always mine, from before he was conceived, and I think the significance of his namesake points to the fact that he was always going to be disabled, and that he would use that disability for the glory of God. To help other people, somehow, in some way, who are disabled like him.

Maybe it was my fault. I don’t care anymore. He’s here. He was always supposed to be here. He gives my life purpose and joy, and that overrides the guilt I have any day of the week. If I gave him spina bifida because I took long walks in the heat for my first trimester, then that lands me among the ranks of parents who totally screwed up their kids by trying to do good by them. And I can live with that.

Like Mary Evelyn said so poetically, I’m moving on. I’m letting go. I’m thanking God for the gift that is my child.

This post originally appeared on Wifeytini.com.

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