In an effort to build a platform for the book I am writing and to encourage an open dialogue for moms about special needs, this fall I will start speaking at MOPS (Mothers of Preschoolers) groups in three States: Illinois, Indiana and Michigan.
I am in the process of preparing talks that revolve around special needs.
1) Unexpected Beauty (our family's story based on my book)
2) Loss and Grief in Motherhood (focusing on having a child with a disability and miscarriage)
3) Us and Them: How to help our kids be good friends to individuals with special needs by being good friends ourselves.
Do me a favor, answer my questions:
1. Do you have a child with a disability? How do your friends with typically developing kids encourage you in your parenting?
2. How do mothers in your circle of interaction hurt you by their insensitivity to your parenting challenges?
3. How do you teach your kids to be a good friend?
4. If you grieved the loss of a child through miscarriage, how long was your grief process?
Showing posts with label Chicago Special needs parents Examiner. Show all posts
Showing posts with label Chicago Special needs parents Examiner. Show all posts
Tuesday, August 30, 2011
Monday, May 16, 2011
Busy-ness and trees
It's a crazy time at our house. Everyone in the family is moving into a new bedroom. The set up will allow Elaina and Zoya each their own rooms (desperately needed... the shared room just wasn't working; Elaina is a light sleeper and Zoya has been getting into trouble with her for horribles things in the middle of the night, like, for instance, ...coughing.) Polly and Evie will still share, but are moving into Elaina and Zoya's old room. Zoya gets the guest room, Elaina gets our old room complete with a big closet (the clincher for her) and Serg and I will move into the largest of the four rooms in order to provide a bigger writing space for me at home.
I cleaned out the basement. We have nine Rubbermaids full of clothes that will be sold (hopefully) at the end of May at a garage sale in Michigan. And I'm slightly obsessed with Craigslist. I've sold the guest bed and the bunk beds and a dresser and bought Elaina's bed, Zoya's loft bed and a dresser, all in a week. My poor husband has acquired a second job as a furniture delivery man. Two rooms are being painted, and I've purchased new bedding. At some point, this all should be finished and we may get back to some semblance of normal around here. Maybe.
We are busy in other ways too. Polly and Evie each have yearly checkups in May and June: Ophthalmology, audiology, spinal scans, neurology, pediatrician general check ups, ENT, what else?, I am probably supposed to be somewhere right now... crap, where did I put the family calendar? I am thinking about schooling for Evie and Polly next year and their upcoming IEPs, forms for the older girls' summer camps (Elaina, theatre camp, Zoya, day camp) and carving out hours to finish the second draft of my book.
I'm not showered, but I did brush my teeth. There are two loads of clean, folded laundry on the dinning room table. Evie is playing with a push toy (big progress!), Zoya is home from school with the flu, Sergei's at the church and Elaina is at a friend's house mommy helping.
To be sure, it's too much. As I write Polly sits beside me, working on her lines and circles. Pre-writing skills are coming slowly. She is poking me gently on the cheek with her pencil. "Mom, write with me?" she asks over and over.
And somehow, I am thinking today about trees. In Ukraine, after Polly's birth, there was a tall, lifeless tree outside my window at the hospital. It was the beginning of April. There were no leaves, no green, hardly any sunshine. A bird sat at the tip of the tree every day, all day, for twenty days, while I waited for my daughter to gain strength and be well enough to go home. The bird became my friend. My world had been picked up and shaken like a snow globe with Polly's diagnosis of Down syndrome. He was still and peaceful. His presence soothed me.
While I've been running up and down the stairs of our two story house, flowers have bloomed outside. The trees are full of luscious, green leaves. Dandelions are growing on the front lawn.
I am drawn to the trees. I position my writing desk to look out the window. The tall limbs help me to breathe. I watch for birds and think and write. I love to look at an oak tree against a bright blue sky.
We are busy. And most days I am stressed, and worried, and unsure of parenting and writing and the new pair of jeans I bought at Target and if I am giving my best to God. But we are in a good spot, a time of peace and joy. A time of sunshine and tree leaves and for that, I am truly thankful.
I have a secret, though, something I didn't know before Polly came along. Something I wouldn't have learned had my life gone exactly as planned.
It's this:
The barren tree has purpose. How else could I appreciate spring blossoms without experiencing seasons of of emptiness? I've grown , my family has grown, and when I see a beautiful green tree I can give thanks. I realize more barren trees are in my future. That's just life. I hope I remember my secret about purpose and growth. The busy-ness of Spring will come back around for us in God's time.
And there is untapped beauty in empty trees.
I cleaned out the basement. We have nine Rubbermaids full of clothes that will be sold (hopefully) at the end of May at a garage sale in Michigan. And I'm slightly obsessed with Craigslist. I've sold the guest bed and the bunk beds and a dresser and bought Elaina's bed, Zoya's loft bed and a dresser, all in a week. My poor husband has acquired a second job as a furniture delivery man. Two rooms are being painted, and I've purchased new bedding. At some point, this all should be finished and we may get back to some semblance of normal around here. Maybe.
We are busy in other ways too. Polly and Evie each have yearly checkups in May and June: Ophthalmology, audiology, spinal scans, neurology, pediatrician general check ups, ENT, what else?, I am probably supposed to be somewhere right now... crap, where did I put the family calendar? I am thinking about schooling for Evie and Polly next year and their upcoming IEPs, forms for the older girls' summer camps (Elaina, theatre camp, Zoya, day camp) and carving out hours to finish the second draft of my book.
I'm not showered, but I did brush my teeth. There are two loads of clean, folded laundry on the dinning room table. Evie is playing with a push toy (big progress!), Zoya is home from school with the flu, Sergei's at the church and Elaina is at a friend's house mommy helping.
To be sure, it's too much. As I write Polly sits beside me, working on her lines and circles. Pre-writing skills are coming slowly. She is poking me gently on the cheek with her pencil. "Mom, write with me?" she asks over and over.
And somehow, I am thinking today about trees. In Ukraine, after Polly's birth, there was a tall, lifeless tree outside my window at the hospital. It was the beginning of April. There were no leaves, no green, hardly any sunshine. A bird sat at the tip of the tree every day, all day, for twenty days, while I waited for my daughter to gain strength and be well enough to go home. The bird became my friend. My world had been picked up and shaken like a snow globe with Polly's diagnosis of Down syndrome. He was still and peaceful. His presence soothed me.
While I've been running up and down the stairs of our two story house, flowers have bloomed outside. The trees are full of luscious, green leaves. Dandelions are growing on the front lawn.
I am drawn to the trees. I position my writing desk to look out the window. The tall limbs help me to breathe. I watch for birds and think and write. I love to look at an oak tree against a bright blue sky.
We are busy. And most days I am stressed, and worried, and unsure of parenting and writing and the new pair of jeans I bought at Target and if I am giving my best to God. But we are in a good spot, a time of peace and joy. A time of sunshine and tree leaves and for that, I am truly thankful.
I have a secret, though, something I didn't know before Polly came along. Something I wouldn't have learned had my life gone exactly as planned.
It's this:
The barren tree has purpose. How else could I appreciate spring blossoms without experiencing seasons of of emptiness? I've grown , my family has grown, and when I see a beautiful green tree I can give thanks. I realize more barren trees are in my future. That's just life. I hope I remember my secret about purpose and growth. The busy-ness of Spring will come back around for us in God's time.
And there is untapped beauty in empty trees.
Wednesday, January 19, 2011
A glimpse of how far Polly has come
This morning as I was making beds and searching for matching socks in the upstairs abyss known as the playroom, I caught a glimpse out of the corner of my eye of a painting my mom had done of Polly in her walker.
Her little face smiles a radiance in the painting. Her chubby arms clutch the metal bars on each side of her body. I remember. She was so incredibly thrilled with herself in the little walker.
In the midst of a usual, chaotic morning I stopped for a moment and breathed in a deep breath of gratitude for Polina's progress. She walks so well now. She runs! She goes up and down our steep wooden staircase carefully. Sure, she holds tightly to the rail. Sure, she's had a few scary topples down the stairs. But she does it. She can do it.
A lot of kids with Down syndrome have hypotonia: low muscle tone. Polly was like a rag doll when she was born. Her arms and legs just hung; she was flimsy and bendy like a stretched out piece of Laffy Taffy. She's almost five years old now, and she still feels like a sack of potatoes when I pick her up.
Her gross motor skills have been the slowest to come. She started using sign language early. She had a fantastic pincer grasp. But her body did not want to move. Her legs had no interest in walking. Every new stage was work. She cried through three years of physical therapy two to three times a week.
Part of her strengthening regiment was using a stander. She was strapped into a large concoction of metal and leather straps for three hours a day. She needed to get used to standing upright. Her muscles needed conditioning. I broke up the time throughout the day; an hour first thing in the morning while she watched Signing Times, another hour later in the day during speech therapy and an hour at night before bed while her sisters read her books and danced around her stander keeping her entertained.
Her desire to walk finally came once we acquired a child sized walker. After she got the hang of it, we'd slowly walk down to the edge of the corner of the block. A few steps forward in the walker. Stop. Look around. Mumble a few unintelligible words. Keep going. The length of our block took her about forty minutes with her walker. She tired easily. She'd almost always start to cry. We took breaks. And then we kept going.
That's how it was for me, too, by the way. I tired easily trying to coax Polly into walking. Thinking about it, I almost always started to cry. I kneaded the crap out of the notion that she may never walk.
But she did. It took a long time. She was almost three years old before she really started taking steps on her own.
Now, most days, I have to catch her to help her put on a pair of socks. After a quick kiss she runs away from me, laughing and luring me into a game of tag.
I am thankful for that glimpse this morning. She's come so far. I needed to remember all the physical therapy, the stander, the walker. Not even a stroke, temporary paralysis and Moyamoya disease have slowed her down.
I needed the reminder of how far we've come. Parenting a child with Down syndrome can be heart wrenching and exhausting. It also can be magical. It gives you a deeper appreciation for little things. It can make you feeling like cheering for making it to the end of the block.
It feels good.
Her little face smiles a radiance in the painting. Her chubby arms clutch the metal bars on each side of her body. I remember. She was so incredibly thrilled with herself in the little walker.
In the midst of a usual, chaotic morning I stopped for a moment and breathed in a deep breath of gratitude for Polina's progress. She walks so well now. She runs! She goes up and down our steep wooden staircase carefully. Sure, she holds tightly to the rail. Sure, she's had a few scary topples down the stairs. But she does it. She can do it.
A lot of kids with Down syndrome have hypotonia: low muscle tone. Polly was like a rag doll when she was born. Her arms and legs just hung; she was flimsy and bendy like a stretched out piece of Laffy Taffy. She's almost five years old now, and she still feels like a sack of potatoes when I pick her up.
Her gross motor skills have been the slowest to come. She started using sign language early. She had a fantastic pincer grasp. But her body did not want to move. Her legs had no interest in walking. Every new stage was work. She cried through three years of physical therapy two to three times a week.
Part of her strengthening regiment was using a stander. She was strapped into a large concoction of metal and leather straps for three hours a day. She needed to get used to standing upright. Her muscles needed conditioning. I broke up the time throughout the day; an hour first thing in the morning while she watched Signing Times, another hour later in the day during speech therapy and an hour at night before bed while her sisters read her books and danced around her stander keeping her entertained.
Her desire to walk finally came once we acquired a child sized walker. After she got the hang of it, we'd slowly walk down to the edge of the corner of the block. A few steps forward in the walker. Stop. Look around. Mumble a few unintelligible words. Keep going. The length of our block took her about forty minutes with her walker. She tired easily. She'd almost always start to cry. We took breaks. And then we kept going.
That's how it was for me, too, by the way. I tired easily trying to coax Polly into walking. Thinking about it, I almost always started to cry. I kneaded the crap out of the notion that she may never walk.
But she did. It took a long time. She was almost three years old before she really started taking steps on her own.
Now, most days, I have to catch her to help her put on a pair of socks. After a quick kiss she runs away from me, laughing and luring me into a game of tag.
I am thankful for that glimpse this morning. She's come so far. I needed to remember all the physical therapy, the stander, the walker. Not even a stroke, temporary paralysis and Moyamoya disease have slowed her down.
I needed the reminder of how far we've come. Parenting a child with Down syndrome can be heart wrenching and exhausting. It also can be magical. It gives you a deeper appreciation for little things. It can make you feeling like cheering for making it to the end of the block.
It feels good.
Wednesday, December 15, 2010
Radio Interview
I am doing a radio interview on parenting children with special needs this Thursday, December 16th at 7pm central on WSTC 1400 and WNLK 1350 on a program called Let's Talk! with Bianca Tyler out of Fairfield county, Connecticut. Thanks to my friend Becky Mills Daye for the hook up!
Click here for more information about the show.I will also be talking about international adoption and my memoir.
It's going to be live. I'm a tad scared.
Wednesday, October 20, 2010
The Cornish family and their amazing adoption story
My friend Meredith and her husband Michael have put together a video chronicling their adoption process. This family puts their yes on the table for God. They take seriously the Biblical mandate to care of widows and orphans.
I met Meredith through on-line Down syndrome support sites and later she was instrumental in her work with Reece's Rainbow in helping us bring Evangeline home.
Check out this video. Pray for these guys. Give towards their financial needs if you can.
Also, 'Wesley' in their video is a little guy from Evie's groupa in her baby house. When we were there last summer we were able to get information and pictures of three kids with special needs to Reece's Rainbow.
The other two children are already adopted and home with loving families. It's Wesley's turn next. Makes me want to cry.
What a story.
I met Meredith through on-line Down syndrome support sites and later she was instrumental in her work with Reece's Rainbow in helping us bring Evangeline home.
Check out this video. Pray for these guys. Give towards their financial needs if you can.
Also, 'Wesley' in their video is a little guy from Evie's groupa in her baby house. When we were there last summer we were able to get information and pictures of three kids with special needs to Reece's Rainbow.
The other two children are already adopted and home with loving families. It's Wesley's turn next. Makes me want to cry.
What a story.
Tuesday, October 12, 2010
Prenatal diagnosis of Down syndrome resource
I have an article up for the Examiner here about a wonderful new resource for parents with a prenatal diagnosis of Down syndrome or who are waiting for the birth to know whether or not their child has special needs.
The website, WWW.DownSyndromePregnancy.org offers a free e-book to download and other useful sources for a sensitive time in life.
Check it out! Oh how I wish I had this resource when Polly was born four years ago.
*Also, remember friends, if you subscribe to get my articles on Examiner.com, it helps build my platform for my memoir and I get paid :). I am the Chicago Special Needs Parent Examiner and my articles pertain to special needs topics.
Have a great Tuesday that feels like Monday because of the holiday!
The website, WWW.DownSyndromePregnancy.org offers a free e-book to download and other useful sources for a sensitive time in life.
Check it out! Oh how I wish I had this resource when Polly was born four years ago.
*Also, remember friends, if you subscribe to get my articles on Examiner.com, it helps build my platform for my memoir and I get paid :). I am the Chicago Special Needs Parent Examiner and my articles pertain to special needs topics.
Have a great Tuesday that feels like Monday because of the holiday!
Saturday, September 25, 2010
A am now officially a Chicago Special Needs Parent Examiner!
I have a new gig to add to everything else going on in my life. I am a Chicago Special Needs Parent Examiner for examiner.com. I will write 1-3 short articles a week (God willing and the creek don't rise :), journalistic pieces about special needs.
This is a great opportunity to get my writing name out there a bit more and make a little revenue. If you would be so kind to go to my page and subscribe. You'll receive my articles in your in box and I'll make more $$. Thanks so much!
Read my first article and subscribe here.
Also, if you are interested in becoming an examiner (there is literally every topic under the sun and it's in every city) email me at gillian@rcn.com and I'll give you the details. If you sign-up through me, I get a reward!
I could also use ideas. If you think of a good article topic, leave me a comment or email it to me.
Thanks, you guys are the best!
This is a great opportunity to get my writing name out there a bit more and make a little revenue. If you would be so kind to go to my page and subscribe. You'll receive my articles in your in box and I'll make more $$. Thanks so much!
Read my first article and subscribe here.
Also, if you are interested in becoming an examiner (there is literally every topic under the sun and it's in every city) email me at gillian@rcn.com and I'll give you the details. If you sign-up through me, I get a reward!
I could also use ideas. If you think of a good article topic, leave me a comment or email it to me.
Thanks, you guys are the best!
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