Valentine’s Day and Pinterest

I love Pinterest, especially for holiday activities. I have a board named Be My Valentine, on which I have pinned many craft projects (that I’ll never make); elaborate food items, including a homeade heart-shaped cookie box (that I’ll never make); Valentine’s cards that require several hours to make; and elaborate Valentine’s Day card holders that no young child can make on his or her own.

For the past two years I have purchased Valentine’s templates on Etsy to create adorable little Valentines.

A tube of Burt’s Bees lip balm accompanied each of these:

BeeValentine

I created these little darlings for preschool. I used Goldfish instead of Swedish fish. Bad move. The grease from Goldfish leaked leaked through Valentine. Ick. I no longer buy Goldfish.

FishValentine

And how can I forget these “cuties!”
OrangeValentines

All of these are completely adorable; however, my children didn’t pick them out. Nor did I include them in the cutting out of them. Why? Because I wanted them to look perfect. (In hindsight, I realized I had them miss out on an excellent fine motor activity.)

Granted, when they were really small, the didn’t really care about the Valentine card, but toddlers still know what they like. And I could’ve given a choice. So this year, I let my five-year old and three-year old pick out their Valentine’s. Fortunately, they both like trains so that made it easy.

We didn’t see any train Valentine’s at the store so we looked at Amazon. (Oh, I love Amazon Prime!)

Alas, the boys found their Valentine’s, complete with envelopes.

TrainValentine

The teacher sent home a class list and I supervised while my oldest wrote out all his Valentine’s…..and decorated each envelope. (I highly suggest spacing this over a period of several days. It would be torture for both parent and child to have them completed in one sitting.)

Next, of course, is the Valentine’s Day card box. Being the Pinterest addict I am, I ventured online to find an adorable box we, ahem, I, could make. My son really wanted to make a train. I brought him a shoe box and a Kleenex box. He went and got an empty toilet paper roll (yes, I keep them.) and started to form his train. I brought out ribbon and scrapbook paper and let him create it himself.

He did it without Pinterest.

He did it without me helping.

He had a wonderful time.

He fished through craft supplies to see what else he could use to create his masterpiece.

And a half hour later, he was finished. And extremely proud of his work.

ValentineCardBox

I would’ve covered the entire box.

I would’ve made sure it was loaded with hearts.

I would’ve not had it be a hybrid electric/steam engine. (Just in case you wondered about the pipe cleaner in back, those are the cables that attach to the wire for an electric train. And the pipe cleaner up front is the steam that would come out of a steam engine.)

I would’ve stolen an opportunity for my son to be creative and take pride in his work.

This year I had an epiphany. My children’s Valentine’s Day party is for them. Not me.

This isn’t my opportunity to say, “look at me!! I’m wonder mommy!”

This was his opportunity to take initiative, be creative, and let his imagination soar.

Not Another Blog Post on Being a Parent to a Child with Special Needs…

Being the parent of a child with special needs, I read a lot of blog posts on what it is like. Everyone has their own opinion, their own feelings, and their own unique situations. I can’t speak for anyone else. But I see lots of comments on how people need to stop being so sensitive, or they are tired of hearing how they should parent. (I do find it ironic when people complain about someone being too sensitive when clearly they are sensitive in being told how to act. But that’s beside the point.) And yet others are wanting to learn more.

So here it goes, another post on what it’s like to be the parent of a child with special needs. And this is just one perspective. My child doesn’t have health issues, or major mobility issues. Mainly, he’s cognitively impaired and has some gross motor and fine motor delays. I’m not going to tell you how to parent. I’m going to provide you answers to potential questions you may have. Also, please feel free to ask me about my life. A favorite quote of mine is “Questions don’t hurt; ignorance does.” (Yes, it is from the Facts of Life.)

Guess what? I don’t think of myself as much different than my friends with children who don’t have special needs. I really don’t. Yes, I have a few more activities in my schedule that make it hectic. But I know other people who have their neurotypical child enrolled in a host of activities and they run around like chickens with their heads cut off. Until my son was in preschool, I was taking him to physical therapy and Early Intervention twice a week. I didn’t complain. I did it. Sure there were crazy days. Days when it seems like it would’ve been better to stay in bed. Everybody has those. Every parent has those.

Am I offended when you ask me questions like, “did you know your child had Down syndrome before he was born?” or “how high functioning is he?” The answer: Of course not. You’re showing interest in our life, our situation. You’re wanting to learn more. It’s an opportunity for me to advocate and educate, not get offended. So don’t worry whether you’ve phrased the question correctly or used the right words. I’m thankful you’re wanting to learn more. I’m grateful for your open mind.

Do I dislike the use of the word retard when used as slander? Yes. It’s saying that those with a cognitive impairment are less human than those without. I also dislike the word gay being used in that manner. And I don’t like the words nigger, Wop, Spick, towel head, camel jockey, kike, etc. I don’t let my kids call people names. And if you use them around me, I’ll politely correct you.

Do I think you should praise your kid for playing with a child with a disability? I don’t care. You’re teaching your child tolerance and to not discriminate. You’re doing a good job. Keep it up. If you told your child to walk away and ignore the child based on cognitive level or physical disability, well, that’s your prerogative too. Not one I would agree with, and quite frankly, you’re teaching intolerance and you might want to reflect on that. But I can’t make you do it. I can simply ask you to put yourself in that person’s shoes.

Is it OK to ask me how he’s doing and what his teacher says about his development? Yes. Please do. Again, it shows you care. It’s an opportunity for me to share what I’ve learned.

Is it OK for you to tell me the accomplishments of your child, even if our children are the same age and yours is doing much more? Yes! I’m happy for you. I’m not comparing my child to yours. Yes, I may wish my child could do those things, but I have to stop and reflect on what all my child has done and is doing, and I get my perspective back. If we are friends, please share your highs and lows with me. Just like you would any parent. My feelings are exactly that. Mine. I decide how to feel. And I want to share in your happiness.

In other words, I’m a parent. Like you. We all have different challenges. Some challenges are bigger than others. I can’t speak for other people. Just me. But if you know me and have wondered these questions, please know that I’m happy you are on this journey with me. It’s not a journey I expected to take. But I can honestly say I feel blessed to be on it.

Let me share my blessing with you.

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50 Shades of Anything But Romantic

So I’ve had no desire to read 50 Shades of Grey. The story line doesn’t interest me as I’m not into romance novels. (And I’m by no means a literary snob. I enjoy frivolous novels.) But from what I’ve heard, it doesn’t even sound romantic. I think a man insisting a woman sign a contract to date (or be his sexual partner, slave…whatever) is far from romantic. Guess I have old-fashioned ideas about romance.

Anyway, due to the hype I decided to read a sample of the first 29 pages of the book. Contrary to popular opinion, I wasn’t even the least bit intrigued. Yes, it reminded me of Twilight. And yes, I read them all. I blame it on my hormones as I was seven months pregnant. Let’s face it,  Edward is a stalker. Stalkers are creepy.

But reading the sample pages gave me some idea if I was being too harsh in my criticism. As I read those pages, I noted that Anastasia kept referring to Christian’s long index finger. I think there must have between three and five references in 29 pages to his index finger. (I already deleted the sample from Nook and was unable to count the exact number.) A bit much for 29 pages. And I could see where Christian might start to covet Anastasia.

After the second reference to the index finger, one particular image popped into my head:

gollum-one-ring

Yup. Gollum.

Gollum had abnormally long fingers.

Gollum coveted the ring. {Insert “my precious” in that gravelly, tortured voice.}  Kind of like the way it appeared Christian was going to covet Anastasia.

So I hate to even the mention the work of Tolkien, who is an amazing writer and storyteller, in the same paragraph as E.L. James, but this was my first thought.

And I am by no means comparing the two authors. One is a phenomenal writer. The other, not so much.

So there’s my two cents on 50 Shades of Grey. Is it unfair to critique a book without reading it in its entirety? Absolutely. Do I care? No.

I’m not a book critic. Just a person with a blog.

Angels Among Us

I was at the hospital today where both my children were born. The hospital has a wonderful cafeteria with an array of fresh cuisine. People actually go there just to dine. That can’t be said about a lot of hospitals.

Anyway, as I waited in line to pay for my pindi chana I thought I would see if I could leave some money to buy a young man lunch. Three years ago this young man, Tyler,  came by at just the right time after my youngest child was born. My youngest child has Down syndrome, as does Tyler. The day after I had given birth as I walked my baby around the maternity ward I ran into Tyler sweeping the floor. He stopped me and said, “Congratulations! He’s beautiful. Like me.” Tyler gave me so much perspective that day. Perspective that would take me a few months to realize.

So three years later, I decided to buy him lunch as a thank you for being kind. I asked the cashier if she knew the young man I was speaking of and she did. She told me that the hospital gives him a certain amount of money for his food and that he usually brings his own and just buys a cookie and milk. So there went that idea. But she asked if I wanted to wait around and thank him myself as he would be in the cafeteria soon.

So I waited. I looked around the hospital and recalled the sadness that overwhelmed three years ago. I saw the nurse who pushed my wheelchair to the door, gave me a hug, and told me everything would be OK and that she would keep us in her prayers. As I reminisced I realized how those tears weren’t really necessary. But that’s what worry and fear do–steal one’s happiness. I’m so grateful for her prayers, and everyone’s, as I had much to be thankful for: a healthy baby boy.

Then I pulled out my phone and looked at the video my husband had sent me the previous night while I was roller skating with our oldest. Our youngest was taking a tubby and saying, “Hi Momma.” He flashed his infectious smile and giggle. I smiled from the depths of my heart.

Tyler came over to meet me. I thanked him for his kind words three years ago, and how I never forgot them. I told him how I will always remember how he said my son was beautiful, just like him. I showed him a picture of my son. He then told me I was beautiful, just like my son. He asked his age and what he was wearing on his head. A hat with a fox face on it. It’s unbelievably adorable!

I thanked him again and told him to have a good day. We gave each other a hug and said farewell. Then Tyler turned around and said, “take good care of that little boy.”

I will, Tyler.

I promise.

Spread the Word – 2014

Imagine you’re a stand-up comedian.

Your audience is comprised of people with Down syndrome and other intellectual disabilities.

Would you proceed to make jokes about riding the short bus or licking windows?

Would you say “that’s so retarded,” “don’t be retarded,” or “don’t be a retard”?

If you wouldn’t say it then, you shouldn’t say it ever.

Take the pledge to end the word: http://www.r-word.org/r-word-pledge.aspx

For a beautifully written article on the subject, read the following article: http://www.huffingtonpost.com/john-franklin-stephens/i-am-the-person-you-hurt-when-you-say-the-r-word_b_4904579.html?1394038063

MLK Day and Love

Being that today is  Martin Luther King, Jr. Day, I thought it would be a good opportunity to tell my four-year-old the significance of this day.

There is a lot I could tell him about Martin Luther King, Jr. and our nation’s history. There will be a time in a few years in which he can learn about the atrocities of the past and how we learn from history, but for now I will let him enjoy the innocence of being four. So I told him that there was a time when kids with different skin color couldn’t play together, go to the same school, eat at the same restaurants, use the same drinking fountain, or ride the same trains. (He LOVES trains so it seemed fitting to use train instead of bus. We will save that story for another time.) I explained that Martin Luther King, Jr. wanted to make sure that boys and girls could be friends regardless of their skin color. I told him that he had a famous speech in which he stated that he had a dream that one day people would not be judged by the color of the skin. And that boys and girls could play together and enjoy the same activities regardless of their appearance.

He was quiet for a moment. (I couldn’t tell if he was actually thinking about what I just said or contemplating what toy to play with next.)

Then he looked at me and said, “So it’s about love.”

I then thought of one of the most widely known definitions of love: Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. – 1 Corinthians 13: 4-7

Yes, my darling son, it is about love.

MLK

Sun Shine Down – Part 2

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Last week I posted a Q &A with author Gillian Marchenko regarding her recently published memoir, Sun Shine Down. Today I’m privileged to have Gillian guest post about where she and Polly are today, and the importance of noticing growth.

It’s a sunny Sunday afternoon. My youngest daughter Evangeline (adopted from Ukraine in 2009, and who has Down syndrome and Autism) swings in the adaptive swing while her Papa dutifully pushes her back and forth. Elaina and Zoya, our two older girls, with adult-like bodies but childlike hearts, swoop and slide on the monkey bars. I shadow Polly, who also happens to have Down syndrome, to make sure she doesn’t get hurt, to help her if she asks.

An elevated Chicago train rumbles above us along the perimeter of the park. I turn to watch it push forward for a moment. The sun blinds my eyes. I look down at my shoes.

My head raises and I glance around for Polly, who seized the opportunity to rush to another activity while her Mom is momentarily preoccupied.

“Polly, where are you?” I call.

“Over here, Mom. I’m here.”

“Where?”

I turn around where I stand. I don’t see her.

“Here.”

Her voice calls from above. The knotted rope ladder to my right shakes, and catch sight of my daughter’s blue and green Velcro tennis shoes command the ropes as she scurries up.

I had no idea she could climb like that, sure-footed, easily, without any help, on weaving ropes that bend and rock as she moves.

Polly is seven years old

Her diagnosis of Down syndrome picked up my world and threw it against a brick wall. In my memoir, Sun Shine Down (published with T. S. Poetry Press in August), for about a year I stayed drippy, unglued, apart, so very sad about the presence of an extra chromosome in my child, and so very, very frightened of the future.

I was as weak as a mom as Polly was as a new baby. Her infant body resembled a bag of brown sugar. For months, her arms and legs flopped around. She was unable to hold her head up for a long time.

As was I.

But Polly and I both have grown important muscles over the last seven years. Her: muscles to stand, and then run, and jump, and climb a knotted rope ladder. And me: muscles to love without fear, to trust God, to advocate for my daughter, and beyond all else, enjoy the crap out of her.

Polly’s growth astounds me. She works hard to acquire new skills. She makes friends with anyone who comes into her sight. She cracks one-liners, causing our whole family to burst our britches with laughter, and she continues to teach me about what is really worth paying attention to in life.

I am blessed to be Polly’s mother. There have been hard timesand there will be more, but I plan to follow the footsteps of my daughter. To take a step when it is difficult, to work until I am sure-footed and able to chase after whatever God puts in front of me, and to make sure there is enough time in my days to appreciate growth; in my family, and in myself.

Gillian Marchenko is an author and national speaker who lives in Chicago with her husband Sergei and four daughters. Her book, Sun Shine Down (http://goo.gl/3hFdH9), a memoir, published with T. S. Poetry Press in the fall of 2013.

She writes and speaks about parenting kids with Down syndrome, faith, depression, imperfection, and adoption. Her work has appeared in numerous publications, including Chicago Parent, Thriving Family, Gifted for Leadership, Literary Mama, Today’s Christian Woman, MomSense Magazine, Charlottesville Family, EFCA Today, and the Tri-City Record.

Gillian says the world is full of people who seem to have it all together. She speaks for the rest of us.

Connect with Gillian on her website www.gillianmarchenko.com, on Facebook (https://www.facebook.com/GillianMarchenkoPage) and Twitter (https://twitter.com/GillianMarchenk).

Amazon link for Sun Shine Down: http://goo.gl/3hFdH9