Posts Tagged ‘ Down syndrome awareness month 2012 ’

My Child With Down Syndrome Is Not A Gift From God

Monday, October 22nd, 2012

In honor of Down Syndrome Awareness Month, I’ve lined up a few guest posters. This one is by Hallie Levine Sklar, a mom of three and (fabulous) writer who blogs at Visions of Johanna

A couple months ago, I was playing at the beach with my three small children—Johanna (Jo Jo), aged 4, Teddy, aged 3, and Geoffrey, then 15 months—when a 40-something woman came up to me.

“Your daughter is absolutely gorgeous,” she said beaming. “I’ve been watching her for a while.”

“Thanks,” I said. Jo Jo is four, and has Down Syndrome. People often stare at her. It might be because she has Down Syndrome, but I also suspect it’s because she’s so darn cute. Today, she was wearing a hot pink bikini and strutting around the sand singing. Her blonde hair was pulled up into two tight pigtails and except for an occasional snot bubble she looked pretty adorable.

The woman kept standing there, awkwardly grinning. “I’m pregnant!” she finally said.

“Great!” I exclaimed. “How far along are you?”

“About three months,” she said. Then she burst out: “I think my baby has Down Syndrome.”

So that’s what this is about, I thought. “Why?” I asked.

“I didn’t do any prenatal testing” she said brightly. “But since I’m 42, I think it’s very likely.”

“Um,” I said, really not sure what to say. “Not necessarily. I was only 34 when Jo Jo was born.”

“Well,” the woman said, “I have to admit, I’ve been so worried about Down Syndrome that it’s been keeping me up at night. But after seeing your daughter, I feel so much better. She’s such a little angel.” Her voice lowered. “In fact, I think that you’re at this beach now for a reason.”

“And what would that be?” I asked distractedly. Jo Jo had grabbed Teddy’s shovel and pail and was pirouetting around her younger brother, who was now screaming “No, no Jo Jo!” and trying to get it back.

“God sent you here,” she said. “So I wouldn’t be afraid of having a baby with Down Syndrome. What a beautiful, special little girl. What a gift.”

“Um, yeah,” I said, thinking, that’s exactly what he did, honey, when Jo Jo whirled around and whacked Teddy right in the head with the sand pail. He wailed. She smirked and then whacked him again.

“Jo Jo,” I yelled, trying to separate them.

My daughter looked at me and beamed at me with her sweetest, most heart-melting smile. “Sorry Teddy,” she said, embracing him with a warm hug. Then she yanked at his hair so roughly he fell face down in the sand.

Mass pandemonium ensued. Jo Jo got a time out. As mortified as I was by Jo Jo’s behavior, I was kind of glad the woman had seen it. Not such a little angel now, is she? I wanted to say, but instead I shrugged my shoulders apologetically. “Five o clock meltdown,” I said brightly. “I think it’s time for us to go home.”

The woman stared at Jo Jo, wide eyed. “I guess,” she said finally.

………..

When I gave birth to Jo Jo, people came out of the woodwork to tell me how “special” kids with Down Syndrome were. They were so sweet, so lovable, always so happy and up for a snuggle. So’s my Labrador retriever, I wanted to say snidely, but I kept my mouth shut. I knew people meant well, but the stereotype of the cheerful, cuddly kid with Down Syndrome was hard to swallow.

Now, four and a half years later, I can say with relief that those adjectives don’t really describe my child. My husband Jamie and I actually realized pretty early on that Jo Jo was one tough cookie: when she was five days old, she shocked the entire NICU when she pulled her post-surgery feeding tube straight out of her nose. When one of the nurses proclaimed her a hellion, we laughed. “You bet she is,” my husband said cheerfully. “She’s our daughter.”

And it’s true. While Johanna may have 47 chromosomes, her full genetic makeup comes straight from us, her parents. She’s got my husband’s impish grin and his impulsiveness. She’s got my pointy ears, my stubbornness, and, quite frankly, my Jewish princess tendencies (especially the love for shopping!) There are people out there who refer to individuals with Down Syndrome as possessing a “magic chromosome” or a “gift from God.” But we think Johanna is magical and a gift simply because she is our adorable, bubbly, vivacious, yummy little girl.

In fact, I think painting kids with Down Syndrome as innocent little angels has the potential to be dangerous, or at least to do them a disservice. It refuses to acknowledge that kids with Down Syndrome are actually human beings with issues and concerns of their very own. I know Jo Jo tries to please, and be a good girl, but like any child, often it’s hard. She’s not as verbal as other kids her age, and because of that, sometimes she communicates her frustrations by say, hitting one of her younger brothers, or throwing something since she’s not able to articulate what she really wants.

I wish I had been able to say all of that to the woman at the beach, who probably left that day after witnessing my kids’ Extreme Meltdown wondering if she really still wanted to reproduce. I want to tell her that at the end of the day, it doesn’t matter whether your child has Down Syndrome or autism or ADHD or any other developmental or behavioral issue. Your child is your child first, and anything else is secondary.

Sure, Jo Jo is a child with Down Syndrome, just like her brother Teddy has a severe peanut allergy and her other brother, Geoffrey, has albinism, a condition that’s left him visually impaired. She is who she is—not an angel, or a divine gift, or anything other than a flesh-and-blood little girl who loves singing and dancing and twirling around the room with her grandmother’s old silk scarves.

And I wouldn’t have it any other way.

Read posts from Ellen at Love That Max:

A Bill of Rights For Parents Of Kids WIth Special Needs

Top 20 Reasons Moms Of Kids With Special Needs Rock

20 More Reasons Moms Of Kids With Special Needs Rock

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It’s OK If You’re Still Grieving About Your Child With Down Syndrome

Tuesday, October 16th, 2012

In honor of Down syndrome awareness month, I’ve lined up a few guest posters. Today’s is from Gillian Marchenko, a writer, speaker, advocate for special needs, and a mom to four daughters. Two of her daughters, Polly and Evangeline, have Down syndrome. You can read all about her family at her website, or follow her Facebook page. This is the message she wanted to share with all of you:

October is Down syndrome awareness month.

As mother of two girls with Down syndrome, I love it.

It’s a great time for focused advocacy for my daughters and for 400,000 other individuals affected by Down syndrome in the United States today.

There are many ways to advocate for our kids. We can blog 31 for 21, (31 days of blogging to promote awareness about Down syndrome), or participate in Down syndrome weekend blog hops. We can gather teams for Buddy Walks, go to a GiGi’s Playhouse shin dig, or speak to elementary classes about disability.

A lot of parents come alive with advocacy in October.

I applaud you. I join you. The simple message, that our kids are more like everyone else than different, deserves to be heard.

This year, however, I’m compelled to advocate for another people group in the Down syndrome community, often overlooked.

I’m talking about parents who, for whatever reason, are not ready or do not want to celebrate Down syndrome.

What does Down syndrome awareness month look like for them? If a mom is too tired to go to a Buddy Walk, or speak to her local school about Down syndrome, does that mean she loves her child less than those who are leading these endeavors? Does it mean those parents are out of our “club”?

These are not rhetorical questions. The answers are no.

Parents: If you have a child with Down syndrome, but aren’t ready to celebrate this October, or if you maybe just plain don’t want to, it’s OK.

That’s my advocacy for you.

It’s OK.

Parents of kids with special needs know better than anyone that each person is unique.

Some of our kids read at an age appropriate level, while others may never help turn a page in a book.

Likewise, we parents are individuals.

There is a spectrum when it comes to parenting kids with Down syndrome. Some parents do it boisterously. They love advocacy, and fundraisers, and clubs. Others still don’t know what to think about health concerns, speech delays, prolonged potty training, and fights for inclusion, all because of a third copy of their child’s 21st chromosome.

It’s time for our Down syndrome community to scoot over and make space for all the members of our club.

There needs to be space for parents who are struggling, for families who are flailing, for mothers who feel like they are failing, for children who may never be potty trained.

Otherwise, we are not actually a community. We are bullies, trying to make people feel how we think they should feel.

The point of Down syndrome awareness is not to show who loves our children most through our actions.

The point is to educate people.

There are many of us. We are all different. Our stories are unique.

Let’s show support and grace to one another.

And make space in our wonderful club for everyone.

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