Tag Archives: pictures of Down syndrome

Polly’s birthday, thoughts on celebrating with Down syndrome

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Polly’s birthday, thoughts on celebrating with Down syndrome

polly and kendall

Her first birthday and my struggle with Down syndrome

My daughter Polly’s first birthday was a great celebration. We had cake, and family, and friends, and ice cream, and pizza, and happiness. Lots of happiness.

But we also had uncertainty, a bit of sadness, insecurity, uneasiness.

Polly was born with Down syndrome, and on her first birthday, I still battled fear every day. What would life be like for my daughter? Would she do well in this world? Would she have friends? Would our lives be normal? I struggled. Oh, how I struggled because I loved my daughter more than life, but I wasn’t sure if the world would love her.

Polly’s sweet cousin Kendall sat next to her at our family party that day. Just six months older than Polly, Kendall’s development and ability were undeniable. I watched both girls grab handfuls of cake and smash it into their faces, and wondered, “what will Polly’s life be like compared to Kendall’s?”

Her seventh birthday and my thoughts about Down syndrome

Fast forward seven years. We prepare for Polly’s seventh birthday party, the first ‘school friend’ party we’ve thrown for our sweet girl. All the girls in Polly’s first-grade typical classroom receive an invitation. We plan snacks and land on the theme of ‘arts and crafts.’

RSVPs roll in. There will be a full house.

And so we prepare …
cupcakes

streamers

 popcorn

The day of the party, Polly can barely contain her excitement as she waits for her friends to arrive.

birthday girl

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

And as an added, extra special treat, it works out that her cousin Kendall is visiting from California and gets to be a part of the party!

cousins

Girls arrive. They craft. They eat.

friends

They sing “Happy Birthday.” They watch my little girl open homemade cards that say things like, “Dear Polly, I’m glad you are my friend.” They ooh and ahh over opened gifts.

Polly’s friends pile around her. They celebrate her. Happy to be at a party, happy to have friends. Just like my girl. There is no difference. My heart is full. Polly’s smile is a mile wide.

friendscouch

 What I’ve learned about Down syndrome

That first year, and time and again here and there through the years, I’ve wasted space in my head worrying about Down syndrome.

I should have, instead, just enjoyed my daughter. I should have known that others; both kids and adults would see so much more than just Down syndrome when they look at Polly. They’d see love, and joy, and life. And of course, they would want to be her friend.

And you know what? Polly and Kendall’s lives are similar. They both have loving families. They both participate in extra-curricular activities, they love dolls, and Strawberry Shortcake, and basketball.

polly happy

And they both have friends.

thanks for coming

 

Tomorrow’s a ‘no’ day, a needed reminder in parenting kids with special needs

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Tomorrow’s a ‘no’ day, a needed reminder in parenting kids with special needs

no day

“Have a great day, Polly! And remember, make it a ‘YES’ day!”

She stopped in her tracks and pivoted to face me.

“Ok, Mom, but tomorrow is going to be a ‘no’ day.”

My husband and I tried to hold it together, as we do daily with the one liners easily crafted by our funny little girl.

Once I shut the door behind my little family, wiped the tears of laughter from my cheeks, and relaxed my tightened stomach muscles from my gaiety, I started to think deeper about Polly’s words.

Tomorrow’s a ‘no’ day.

What an unknown concept to parents of kids with special needs. Saying no. Having a ‘no’ day.

Read the rest of this post at www.notalone.org.

Leading the way, thoughts about sisterhood and Down syndrome

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lead the way

(I’m on vacation this week … So here’s a post from the archives. Enjoy!)

Leading the way, thoughts about sisterhood and Down syndrome

When Polly was born and we learned of her diagnosis of Down syndrome, I grieved the child I expected. I didn’t know much about Down syndrome. My mind quickly flipped to un-flattering images of a child sitting alone at recess, or a mother in her golden years walking slowly through the aisles of Wal-Mart so that her adult daughter, still a child, could keep up. Sadly, it took me a while to let my guard down and fall in love with Polly.

Polly’s older sisters led the way. From the moment they met her, they dripped with love for her. They loved everything about her: “Oh, look at her pudgy little hands! Look at her wispy brown hair. Isn’t she just the cutest little thing ever?” When we later explained to them that Polly had Down syndrome, and that she would need a little extra help doing things, they didn’t bat an eye. “I guess it’s good that God gave her older sisters, huh, mom?” Elaina said.

Indeed.

Three years ago, when Evangeline joined our family, Elaina and Zoya took the lead once again.

Elaina stayed with me for seven weeks in Ukraine until the adoption was finalized. She spent long, Kiev days tickling Evie and helping me take her outside for walks as we waited for the paperwork for the adoption to go through. Once again, I struggled, and my kids led the way.

Snapshot from today:

A toy came home in Polly’s backpack today from Kindergarten. It’s one of those birthday favors. You blow on it and it flings out in front of you. What fun! Polly figured it out right away, and I was thrilled that it wasn’t the one with sound.

A little while later while I was finishing up an email on the computer, I saw Polly bring her new toy into the kitchen. Evie was sitting up on top of the table (one of her new favorite perches in the house), kicking her feet off the edge.

“Look, Evie,” Polly said, moving carefully, climbing up on the bench and then sitting down next to her on the table. “Look, Evie, it blows out,” she said, and then promptly gave a demonstration. I fought the urge to intervene. Evangeline is easily spooked and she is not Polly’s biggest fan. Most people love a happy, in your face five-year-old but Evangeline could do without. But I took a breath and waited to see what happened.

“You see that, Evie. It’s red. It’s pretty. It’s fun.” Polly blew on her toy again. “You like that, Evie. Do you?”

And the most amazing thing happened. Instead of reaching out and grabbing the toy. Instead of crying. Instead of getting the heck out of dodge (read: getting down off the table and away from Polly a.s.a.p.) Evie laughed.

She laughed.

Polly blew her toy again. Evie kept laughing. And for about five minutes they seemed like they were, I don’t know what’s the word?, playing together.

It was magical.

When Polly was born, I worried that she would feel alone but I learned quickly that her sisters would never let that happen. When Evangeline joined our family, I worried, I still worry, that we won’t be able to reach her. Some days she is very far into her own world. And then today, Polly initiated a game with Evie and Evie, just a little, for a few moments, let her in. Polly had Elaina and Zoya to prod her along in her development, and now she is starting to lead the way for Evie.

The magic is now gone. Polly broke her toy because she kept twisting the blow out part. Evie stole all of Polly’s pretzels out of her favorite ice-cream bowl. Polly is running circles around the house yelling, “hey, Evie, leave my snack alone” and Evangeline has climbed off the table. As I type she is eating pretzel bits off my, um, super clean kitchen floor.

But I don’t care. I’ll take the five magical moments when I saw Polly work her sister mojo on Evie.

Sisters are the best therapists in the world.

World Down Syndrome Day 2013, RAISE YOUR FLAG

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World Down Syndrome Day 2013, RAISE YOUR FLAG

AUTHOR

Today is World Down Syndrome Day 2013 …

And I have no idea what to write, let alone the message I want communicated in the words I type.

Why is this?

I’ve been advocating for my daughters with Down syndrome for seven years. Even in the beginning, after my daughter Polly was born, as I grieved the child I expected (mostly out of ignorance), I still picked up whatever flag I could and waved it vigorously for Down syndrome.

That first year, when my eyes were still rimmed red from crying, and my hands shook a bit when I talked because I couldn’t get this feeling of dread out of the pit of my stomach when I considered my daughter’s life and the effects of that extra chromosome, I still wrote a letter to the editor of a local newspaper about World Down Syndrome Awareness Day. I still joined my voice to countless others fighting to help the world see their children as they should: children. Normal children who may need a little extra help in certain areas, but who  have so much to offer, who are productive members of society if only those around them would take the time, and provide opportunities for them to display it.

I guess this year I’m just tired of convincing the world of my children’s worth.

As a special needs mom, my life is filled with advocacy, and fighting, and working to help my girls reach their God-given potential, and making sure they get fair shakes at life.

I’m tired.

My friend wrote this great post the other day about how Down syndrome must lead to action. To paraphrase (and you really should go read her post, because it puts much, much better), it is nice when kids with Down syndrome are acknowledged, and even appreciated. But what they need, what WE as their families need, is for society as a whole to pick up the flag of advocacy.

Yes.

If you are reading this post today on World Down Syndrome Day 2013, and you like, or love, or appreciate Polly and Evangeline, then I ask you to raise your flag. Appreciate my girls. Love my girls. And please, stand up and fight for my girls.

As my friend so eloquently put: 

I ask you to act on what you now know, what you are aware of. The next time you are in your child’s classroom, look around. Do you see any children with Down syndrome or other Neuro or physical differences there? No? Ask the teacher, ask the principal, “Where are they? Why are they not with my kids?” Tell them that you believe in the equality of all people, and the rights of children like mine to be educated in regular classrooms alongside their peers (your children).

What I love about my two daughters with Down syndrome, and what I want others to know about them is simple:

They are normal little girls, made of the stuff other little girls have, flesh, blood, love, laughter, selfishness, wonder, mischief, curiosity, impatience … When Polly was born I ignorantly assumed she would not be a typical little girl. I made the mistake of thinking she would not be the little girl I wanted. But her presence in my life and the God-ordained appearance of her sister Evangeline through international adoption from Ukraine daily eradicates my pre-conceived notions about individuals with disabilities. Sure, my girls have special needs. But they also have what I call “special powers,” the ability to love without limits, to smile at a new day without drudgery, and to teach this Mama over and over what really matters in life.

On World Down syndrome Day, I ask you to remember that regardless of a child’s ability or disability, she is a child first, and should be empowered and celebrated all the days of her life. If forced to point out differences about my girls, well then, they have ample supply of the good parts of the human heart, gifts from God himself to reveal his glory: joy, love, kindness, courage, endurance. Pay attention to my daughters, and to what they have to offer, because these are the things that most of us find wanting in ourselves.

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Want to read more about WORLD DOWN SYNDROME DAY? Here’s more:

Mothers share truths learned because of Down syndrome at NotAlone.com

3 for 21: A Bite Sized Blog Hop for Down syndrome and Change

Amy Julia Becker’s Down syndrome around the world series at Thin Places

International Down Syndrome Coalition: parents who blog about Down syndrome

She stands tall, not trying to fix the child I adopted

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She stands tall; not trying to fix the child I adopted

Stands

When we adopted Evangeline from Ukraine in 2009, she hunched. She cowered. She chose to spend her time hidden in little pockets of the house, behind the sofa, under the comforter on her bed.

How would I bring her out of her shell? How would I get her to not only make eye contact with me, but to trust me and let love in after two and a half years of a myriad of caregivers, confined to a crib a lot of the time, and no real person in her life to call her own?

I resolved to fix her. My love would break through.

Oh, I tried. And failed. And tried some more.

As her mom, I started to hunch too.

Guess what? I couldn’t do it.

I could not fix my adopted daughter. There were too many things at play: her diagnosis of Down syndrome, abandonment, autistic tendencies, fear, distrust.

But with time, fixing Evangeline fell by the wayside. God started to show me that I didn’t need to ‘fix’ Evangeline. That wasn’t my role.

She did not require fixing.

He pointed out to me through pools of tears and feelings of failure as her mother that I simply needed to love her. Not fix her.

Once that thought occurred to me, the pressure eased.

Sure, I still try to help Evangeline break out of her shell. I drive her to therapy. I read to her, do hand over hand with her to complete a puzzle, teach her how to use pictures to communicate since she is non-verbal, and encourage her to look people in the eye, to give high fives, to realize her surroundings and engage.

But I am not desperate to fix her anymore.

Would I like to hear her voice? Absolutely.

But am I content being her mom, and loving her for who she is. A resounding yes.

Today I spent the morning in Evie’s classroom for observation.

I saw a little girl happy to be at school.

I saw a little girl who still doesn’t really acknowledge those around her. And I’d be lying if I didn’t say that my heart ached to see that she was one of the lower functioning students in her special needs classroom.

But I also saw her standing tall. Confident in herself. More willing to look people in the eye. More open to returning smiles and allowing people into her world.

She watched me gather my things to leave for home. And something amazing happened to this Mama who all along simply craved her love, and let that drive stoke the fire to try to fix her to our relational detriment.

She walked over to me, and raised her hands for me to take her. I picked her up, and she wrapped herself around me tight. A smile lit her face.

She did not want to be put down. She did not want me to go. She knew I was her mother.

And that she belongs with me.

I cuddled her for a while, whispered love and peace into her soft little ear.

And when I put her down we stood, my daughter and I, looking at one another …

Both standing tall.

Down syndrome through a dad’s eyes

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treyton-arnold-ball-glove

(Join me in welcoming Rob, who writes thoughtfully and beautifully about Down syndrome through a dad’s eyes, at Treyton’s Posse. Welcome Rob!)

Down syndrome through a dad’s eyes

If I close my eyes and concentrate I can almost hear the voices like I was there. I hear my wife Leigh Ann asking me, “Rob is he all right? Is the baby healthy?” I can hear the nurses whispering as they work through the Apgar score for my precious baby boy. Treyton is my fourth child, my first son. He is perfect.

The new normal

I went through similar paradigm shifts with the birth of each of my four children. Prior to their births I could not imagine our family with an additional member. At first it was just my wife and me. I could picture us having a baby, but really, I didn’t have a clue about what it would be like.

Like all new parents we made a few adjustments and settled into life with our new baby. But, when Leigh Ann told me we were going to have a second child I was blown away. How could I love another baby like I loved Bailey? What would our family be like? Soon after Taylor came into our lives it all seemed so natural. Then we had Lindyn. No, I didn’t transfer the lesson I learned with my second child, I went through that same process again with her and then finally with Treyton.

For me, I was content with my family as it was and never thought we needed to expand it. However, once I gazed into the eyes of that little miracle that just entered my life I no longer could imagine life any other way. What I considered normal for my family the day before was no longer normal; we had a new normal in the Arnold house.

One tiny little extra chromosome

I heard them say, “It’s a boy!” All I could think was, “wow, this is going to be different.” Yes, this was our fourth child but our first boy. I like change, it is exciting. This was exciting. As they handed me my son I could hear Leigh asking me if he was okay. As I looked into his eyes I saw perfection. He was perfect, this is my son. He is exactly how he is supposed to be. I did not want any other child, I wanted this one.

Leigh Ann’s concerns about Treyton’s health were unique to our fourth child; she did not ask me that with our three girls. She was worried about what the doctors called “possible indicators” discovered during the pregnancy. The indicators weren’t strong but there were a couple of things that pointed to the potential for Down syndrome. We were told there was a 3% chance that the baby had an extra chromosome, Trisomy 21.

This is the whole men are from Mars thing right? When we were told about the 3% chance I heard that there was a 97% that nothing was wrong. That is an “A” on the grading scale. My wife does not think like me and did worry throughout the pregnancy.

No man left behind

When we were given the official diagnosis of Trisomy 21 I did not care. I was and still am thankful for my son – he is a blessing. The way I see it, each of my kids have unique needs. As parents we work to make sure each child has what they need. This was no different.

My son has Down syndrome and with that come needs that my other kids did not have. As their father I am simply trying to provide the best for each child whatever that is. Down syndrome or not, I will be there for each of my children in whatever capacity they need. No matter what.

About the author

four-color-clover-clear-bac

Like most people, Rob Arnold wears many different hats. He is a husband, a father, and a business person to name just a few of them. When he and his wife were told their fourth child had Down syndrome he began to see things to which he had previously not paid attention. Now he also wears the hat of Down syndrome advocate. You can learn more about Rob Arnold and his journey into the world of Down syndrome at www.TreytonsPosse.com.

 

 

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Special Needs Parents: I give you permission

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happy plain

(I’m over at Not Alone: Where Special Parents Find Community, talking about how sometimes as we parent kids with special needs, we need permission to say it’s hard. Read the whole post here … It’s my first time there. I’d love for you to stop by!)

Special Needs Parents: I give you permission

Are you a parent to a child or children with special needs?

If so, I have a message for you today.

I GIVE YOU PERMISSION.

I give you permission to be tired.

I give you permission to cancel a therapy session.

I give you permission to feel weak.

When it comes to your child with special needs, I give you permission to allow a little grief to co-exist with other emotions like love and joy.

Are you a special needs parent? Then it’s my prayer this post will encourage you today.

READ THE FULL POST HERE …

Ugly prayer turned pretty

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Ugly prayer turned pretty

God, I am attempting to draw near to you, I know that in order to do so a lot of shit needs to be drained out of my life. I seemed to have clogged up at some point.

Call it depression, call it exhaustion, call it caregiver burnout, call it what you want. I’ve lived numb for a while, but now you are awakening me. My limbs tingle, there’s a bit of a rumble in my belly, my heart is beating a tad louder, enough to show me I’m alive – and that my purpose is to give you glory with what you’ve given me.

I pray that you show me what I need to change, and good luck with that, because I’m afraid my heart could probably when a spot on HOARDERS these days.

I see cars drive by out the window. I hear the heat tick on here in the house. I have a lump in my throat when I dare myself to be still and look to you. My hair is greasy,  I’m weary, and unsure.

Sheets on beds desperately need laundering.

And so do I.

Here I am.

And the best thing about all of this is you are here too.

maya angelou