World Down Syndrome Day according to Polly, an 8 year old with Down syndrome

World Down Syndrome Day is Saturday, March 21st

Did you know that Saturday (3/21) is the 10th Anniversary of World Down Syndrome Day? People all over the world are doing their part: speaking in classes, passing out brochures, posting about it on Facebook, to make sure the word gets out. People with Down syndrome are more like the rest of us than different.

My daughter Polly, 8 years old, explains Down syndrome…

Polly and I put together a little video to help celebrate! We’d so appreciate it if you would share it. In Polly’s words “Down syndrome just means you need a little extra help.”

To learn more about World Down Syndrome Day, check out WDSD 2015 and A Day in the life with Down syndrome.

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And have you seen our book Sun Shine Down? I wrote this memoir about Polly’s birth and diagnosis of Down syndrome while we were living in Kiev, Ukraine.

You can read an excerpt of it on NoiseTrade right now!

Happy World Down Syndrome Day!

Letting go of self-sabotage

Letting go of self-sabotage on the special needs journey

It took Polly, who was born with Down syndrome, a long time to walk. When she was around two and a half years old, her physical therapist loaned us a stander; this wooden contraption that looked like it may have been used for torture at some point in the past, designed to strap kids in while standing upright to build muscle mass, you know, the stuff that is critical for one to stand and walk. Because of the existence of an extra chromosome in Polly’s make up, she experienced extreme hypotonia, i.e. low muscle tone and gross motor challenges proved difficult and frustrating for our girl.

Our assignment was to strap Polly up in the stander for three hours a day, every day. Did I mention she was two-and-a-half?

At first, surprisingly, Polly was indifferent. I would tell her, “Polly, time to stand,” and hold out my left hand, palm down flat, two fingers from my right hand making an upside down V on top of the surface.  Polly would shrug her shoulders and we’d began the various steps required to get in the stander.

Soon after, though, she grew combative about standing. This is where the sabotage emerged. She figured out how to hike her little rear up over the thick leather strap that circled her middle, thus creating a ledge to sit on while she was supposed to be standing. She pulled the Velcro strap apart one handed, attempting to free herself. Eventually, it was all out war. Polly kicked the stander, pulled off the strap, and tried to push over the large wooden base. Thankfully I always got to her in time and she was unharmed. She made it clear she was sick and tired of the stander.

But we plodded on. Polly’s inability to walk frustrated her even more than that blasted stander, and I, being her mother, knew the grueling assignment was for her greater good. So, I made sure she ‘did her time.’

Letting go of self-sabotage on the special needs journey

Friedrich Nietzsche said, “What doesn’t kill us makes us stronger.”

Then why do I sabotage so many things in my life that ultimately will strengthen me? I ignore my Bible for Facebook. I focus on what other children are doing and compare them to the things my children aren’t even close to doing. I pick fights with my husband, and snap at the kids. I kick, I undo, I push.

The special needs journey can be difficult. Our daughter Evangeline, eight years old (Polly’s sister), has autism and Down syndrome. She is no where close to potty training, and her sensory needs, at times, causes her to lash out and bite, and scratch, and pull hair. I find myself at my wits end. I’m exhausted and unsure of how to help her. I’m unsure of how to help myself.

In the New Testament, the Apostle Paul writes about these struggles:

For I do not do the good I want to do, but the evil I do not want to do–this I keep on doing. -Romans 7:19

I can’t speak for you. But I know that if I continue to ignore good, profitable, and God-honoring things in my life, my proverbial ‘standers’ that help to strengthen and encourage me, I will lack muscle desperately needed, the muscle provided by God, to parent my children well.

I will sabotage myself and my family.

And that’s not what God has for me. That’s not what God wants for any of us.

So, let’s all learn from Polly, today. If you are a Christian, abide in Christ. Stay in his word, even when you’d rather peruse the Internet. Talk to others about your struggles. Kiss your spouse. Hug your kids. Tape scripture on your refrigerator… Do whatever it takes to let go of our sinner’s sabotage that Scripture says so easily entangles.

I’m trying… I’m failing a lot. But I am trying some more.

After a while, Polly gave up on sabotaging her stander. She grew stronger, and started climbing stars, pulled herself up on couches, and stepped out again and again, one shaky, muscle building step at a time, to a fuller life of participation and joy.

I want that for me. I want that for you, too.

And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. -Philippians 4:7

*This post was first published on specialneedsparenting.net. 

Zemanta Related Posts ThumbnailHave you had a chance to read my memoir about Down syndrome Sun Shine Down? If not, you can find an excerpt Noisetrade or pick up a copy of your own on Amazon.

Get Your JOY Back: An Interview with Laurie Wallin {Giveaway}

Some studies report as many as one out of every four families in the U.S. has a child with a special need. Parenting is stressful even when a child doesn’t have a physical, mental or emotional difficulty. One can imagine the stress on special needs families. Laurie Wallin meets these parents right where they are in her new book, Get Your Joy Back: Banishing Resentment and Reclaiming Confidence in Your Special Needs Family (Kregel Publications/January 27, 2015/ISBN: 978-0825443398/$13.99).

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Wallin strives every day to live out her message for families: that no matter the challenge, in Jesus they can have joy and confidence. Get Your Joy Back is full of biblical insights and practical strategies to help parents recognize and shed the resentments that leave them spiritually, emotionally and socially drained. Wallin sugar-coats nothing but addresses issues with honesty, humor and — above all — hope.

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Q: Get Your Joy Back comes from a very personal place for you. Tell us about your family.

I’ve been married for almost 16 years to a man who’s a tech whiz with a wicked sense of humor and an Asperger’s diagnosis. That keeps us on our toes as parents of special needs kid because their challenges exacerbate his and vice versa. But the loyalty inherent in his wiring has also been an immeasurable gift and stabilizer for me as his partner in our family. We have four daughters, ranging in age from 6 to 13 years old. Two are foster/adopted with a half-dozen medical, developmental and mental health special needs. We daily attempt to balance our pre-teens’ mood disorders (as if pre-teens weren’t already moody), therapeutic appointments, communication with teachers and “normal” family stuff like sports, making meals, doing homework, brushing teeth, wiping up spills and my desire to lock myself in a closet and watch entire seasons of Downton Abbey in a single night.

Like most parents reading my book, we wanted to be parents but never sought to parent high-needs children. When we adopted our older two, the papers said the girls were healthy, rambunctious toddlers. Their special needs became apparent throughout the following two years, as did their resourcefulness, emotional depth and tendencies toward art and living-room tickling matches.

Q: What makes Get Your Joy Back stand apart from other books written to special needs parents?

It’s not about the kids. It’s about the parents — the primary caregivers, specifically. There just isn’t much out there for the people who are parents of these special kids. Our lives become about getting our kids the best possible care, and we can nearly become invisible. It effects our health, life expectancy, quality of life, relationships, careers . . . and we often feel like that’s just how it is and there’s nothing to be done about it. This book says, from a fellow parent in the trenches: “You’re still there. I see you. And you matter, beyond your role as Mom or Dad.”

Q: What did you mean when you said this book will help parents “stop the madness”?

The madness is the treadmill on which we find ourselves as parents. The “keep trying harder, keep ignoring what hurts you, keep putting off your needs, keep doing, doing, doing” treadmill. This book gives parents permission to get off that treadmill and provides the practical tools to release resentments, lower stress and replace unhealthy thought patterns with ones that restore joy in their lives and relationships.

Q: Why do special needs parents often feel so isolated?

They’re isolated by their child’s needs and schedules, as well as by misunderstandings with people they know.  Every family is constrained by a 24-hour day, and even for families without a special needs child, there aren’t enough hours in the day to get everything done. However, for parents of special needs children, instead of the occasional doctor’s appointment or meeting, these families’ days are full of trips to therapists, doctors, pharmacies, meetings at the school and calls to work with insurance providers and medical suppliers.

Many of the parents I interviewed for the book have also felt judgment and misunderstanding from peers, churches and communities, such that they shy away from pursuing relationships. That was one of the primary reasons for writing this book: to invite weary parents to see a way out of the stress and isolation so they can feel whole and thrive again.

Q: Why is it so important for special needs parents to take care of their own well-being?

Airlines instruct passengers that when the cabin pressure changes and oxygen masks drop down, we’re to put on our own before helping anyone else with theirs. We lose that principle somewhere in the life-and-death, post-traumatic, stress-inducing experiences we have as parents of kids with special needs. At some point the diagnosis is made and our child’s new normal begins to form, but ours never does. We stay on high-alert forever. We know our kids depend on us, but we don’t translate that into giving ourselves permission to take care of ourselves enough to support that load.

Q: Do you have moments when you aren’t sure you can make it through the day? What gets you through?

It’s a more unusual day when I DON’T have moments like that! So, yes. How do I make it through while my teen who has bipolar disorder and learning disabilities is melting down over three math problems, and her sister needs my attention because her seizures are outrunning her medications? I do it doused in reminders of God’s grace, listening to inspiring music, the audio Bible, even spoken word slam poetry from my favorite Christian artist. (Notice the theme? Audio. I’m able to stream it while doing all the other parenting stuff, if needed.) I do it by talking to God like He’s standing there with me, complete with griping, begging, crying or whatever is needed in the moment.

I do it by getting a little more sleep on the hard days, eating balanced meals (and setting a timer if I have to, so I don’t dip too low on the blood sugars), getting into the sunshine every day, using lotions with scents that evoke calm, drinking tea and having a super-secret stash of salted dark chocolate with almonds.

I also applied to public programs for respite and money to assist in having a trained caregiver in the house who isn’t just there for my kids; she is my right arm in whatever way I need help in the house or if I just need a time out to walk a few laps around the block.

Q: You interviewed more than 70 families when writing Get Your Joy Back. What was the most common theme you heard while talking to them?

The most common response is that they felt misunderstood, by family, friends, church, professionals and even their own spouses. Being misunderstood leaves many feeling hopeless because they don’t feel sharing their needs or struggles will even matter.

Q: While you are very open about your struggles, that wasn’t the case for the majority of the parents you spoke to. Why do you think they had such a difficult time talking about their issues?

I believe it’s because as Christians we’re trained not to feel bad for too long because if we do, we either 1) don’t have enough faith, 2) didn’t pray enough or 3) must be the problem that’s bringing such trouble to our families. Somehow the unspoken doctrine, which many parents mentioned in their survey responses, is that you can struggle in church, just not too loud, too long or in ways we can’t explain away with Christian-isms.

After a while, parents get to a place where they don’t even acknowledge their hard feelings. They convince themselves they’re OK and nothing is too hard because they’ve grown accustomed to making it sound OK (read: Christian/faithful enough) to people they’ve tried to talk to before.

Q: You talk in the book about forgiving your child. Have you found that idea to be controversial in any way?

Yes, that’s bothered some people — mostly people who are still struggling with what we were just talking about. But also because the second we let ourselves say what we grieve about our child, we feel guilty for even thinking that. After all, it’s not like our child planned or asked for this or wanted to make our lives hard! We don’t realize that by censoring our emotions, we’re not being more spiritual; we’re being dishonest and short-circuiting the healing God will certainly bring when we take an honest look at the challenges.

Basically, any controversy I’ve encountered thus far hinges on the fact that typically, as westerners, we don’t understand healthy grieving. It feels so uncontrollable and so undefined . . . like a black hole. When it comes to our kids, that translates to “I don’t want to even THINK about my negative feelings about my child or her condition because then Pandora’s box might open and swallow me whole. My family needs me. I can’t take the risk to fall apart.” That kind of thinking robs us as parents of the joy on the other side of healthy grieving.

Q: What is the number-one thing you hope Get Your Joy Back does for special needs families?

I hope the book breathes joy and confidence into the deepest, weariest places in their hearts and lives and they leave it feeling recharged and hopeful in relationships at home and beyond.

Learn more about Laurie Wallin and Get Your Joy Back at www.lauriewallin.com and on FacebookPinterest or Twitter.

To win your very own copy of Get Your Joy Back, head on over to our Facebook page to enter or simply comment below with your favorite way to get your joy back! Ends February 1, 2015 at 12:01 a.m. CST!

Love pushes us to the front of the crowd, reflecting on a dual diagnosis

Love pushes us to the front of the crowd, reflecting on a dual diagnosis

love pushes us, living well with dual diagnosis

I belong to a private Facebook group for parents who have kids with a dual diagnosis of Down syndrome and autism. I think of myself new to the autism world but in actuality, my fourth daughter Evangeline has held the diagnosis for, oh my goodness what has it been? Two years?

Although I mostly lurk, the dual diagnosis group has become a place of refuge for me. I find parents sharing their days with one another in the midst of the challenge of autism, which, among other things, usually steals a child’s ability to connect with those around him or her, and Down syndrome, which in most cases among other things, includes a deficit in cognition due to too much chromosomal matter, i.e. that dangling, mysterious third squiggly line on the twenty-first pair of chromosomes in a person’s DNA.

The reason I like the private group of parents is because I can be real about life with a dual diagnosis and know there are others walking a similar path.

Imagine, if you will, two scenarios:

Scenario one: Your eight-year-old child walks into the living room while you are entertaining guests, looks people in the eye, possibly reaches out a hand, and says “Hello Mr. and Mrs. So and So. How are you?” or “Nice to meet you.” He then sits and listens to the conversation for a moment before getting bored, and heading off to find something else to entertain him.

Scenario two: My eight-year-old child walks into the living room while we are entertaining guests, looks around, but stares through the people. She walks over to the couch with large areas covered in duct tape because it had been shredded, climbs up on the couch, reaches up and grabs the floor lamp and smashes it to the ground. She then leans over, as her parents scurry towards her and the lamp, grabs a chunk of one of the guest’s hair, and pulls with all her might.

Living well with dual diagnosis

Fairness

I have a childhood friend who, although we laugh about it now as adults, was obsessed with the concept of fairness. If you are eating a green apple in front of me, than you better have another one to share, otherwise that wouldn’t be fair. In my youth, fairness was a bit of a foreign concept. I’d like to think it was because I was just that evolved as a youngster, but it probably has more to do with the fact that I was the youngest of three kids, my brother and sister were years older, and there just wasn’t a lot of need for ‘fair.’

As an adult, as a mom to four, as a mom to kids with disabilities, can I be honest? A dual diagnosis isn’t fair. Evangeline received a double whammy; she struggles to interact with us, is nonverbal, and at times aggressive in her behavior. She’s been robbed of both sides of the coin; sociability and cognition. No, it’s not fair.

But I try not to focus on the difficult aspects of raising Evangeline publicly. I don’t share all the hard things she does at home often. I don’t want people to think she is a burden. And I don’t want to damage the cause a lot of parents work to put out in the world; that our children are valued and hold meaningful places, just like anyone else, in our families and in society at large.

So I play down the hard parts.

But if I always play down the hard parts then the narrative of our family’s life is incomplete because Evangeline and the wholeness of who she is falls into the shadows.

Love pushes us, living well with dual diagnosis

We host a Bible study in our home on Tuesday nights. Last night, in continuing our study on the book of James, we talked about the importance of cultivating patience in our lives. We were challenged to consider impatience on a day-to-day basis: waiting for a meal at a restaurant, standing in line at the airport, wanting to know TODAY if you got the job.

And we concluded that one of the reasons for impatience is a deep seeded belief that people around us, (and even God himself) love us for what we do. If that’s true, we best do as much as we can, as well as we can, and be seen in the best possible light.

This can be an issue in regards to disability, as well.

The world is going to love and accept our kids based on what they do, so we best scoot the ones who are doing the most towards the front of the crowd. We are going to showcase the child with autism who is a music prodigy, not the one who sneaks out of his house at least once a week nearly scaring his mother half to death. We are going to talk about the adult with Down syndrome going to college, and not so much about the adult with Down syndrome who wasn’t able to get potty trained.

I have two daughters with Down syndrome who function very differently from one another. I know firsthand what it is like to put forth more attractive attributes of our kids. I’m guilty of doing this, too.

But what I hope to do, what I am trying to do…

What I’m convicted to do is to put forth all my kids, to bring them all to the front of the crowd and share with the world that they are loved by their father and me not for what they do… but simply for who they are.

My belief system is wrapped up in the person of Jesus. I know not everyone reading this post shares my world view. Regardless, though, I think the message applies. If you read Scripture, especially the Gospels, you can’t help but notice that Jesus loved people not for what they did. He loved them because of who they were. His love had no conditions. He simply loved.

Love pushes us, living well with dual diagnosis

So, I’m going to try not to hide all the hard parts of parenting Evangeline (and Polly, and their older sisters Elaina and Zoya, for that matter). I’m going to try not to downplay the dual diagnosis. I want people to know Evangeline has immeasurable value in being herself, today, right now, smashed up lamps and biting included.

And I am pushing my relationship with Evangeline to the front of the crowd, albeit imperfect, challenging, and at times frustrating (just like all her other sisters), because she deserves it as much as anyone else and because our lives equal out. Not only does Evangeline smash lamps, but she also gives kisses now. Sometimes she lets me rock her to sleep. She smiles when I walk into a room. There are good parts to our story and hard parts, but most of all, there is love.

And love pushes us to the front of the crowd.

Should you throw a birthday party for your child with special needs?

Should you throw a birthday party for your child with special needs?

When the time is right… YES!

We did it. We finally had a ‘friend’ birthday party for our daughter Evangeline when she turned eight years old a couple of weeks ago.

I know some of you are probably thinking, ‘why is this even a question?’

I get it. I really do. Of course all kids deserve parties. But for some of us, it just isn’t that simple.

The thought of a party frightened me. I wanted the party to be fun for her but I worried it would all be too much. Evangeline has a dual diagnosis of Down syndrome and autism, she can get overwhelmed easily, and so far at best hasn’t shown much interest in her birthdays; presents, singing, the whole thing. At worst, she gets spooked by it all. She hates lit candles, and for some reason doesn’t care for the birthday song.

Except for cake. This little chick loves cake.

But I wanted a friend party for her because nonverbal doesn’t mean she doesn’t understand. I wanted to show her we were gathering to celebrate HER. I wanted her to feel our love, to know how thankful we were to have her as our daughter, sister, and friend.

I wanted the friend party for my other kids, too. I would hate for them to wonder why they get some things and my kids with special needs don’t. They know it is Evie’s birthday. They love her. They want to celebrate her. To them, she isn’t Evangeline with Down syndrome and autism. She’s simply Evangeline, their sister.

I wanted the friend party for the people in the world who still, for some mind-boggling reason in 2014, don’t think individuals with disabilities deserve things like inclusion in schools and communities, birthday parties, and yes, sadly sometimes, even life itself.

And I wanted the friend party for me. Because I worry that sometimes our family life gets too small, because things like friend birthday parties can be difficult and disappointing and so we choose not to do them. We don’t want to fail. We don’t want bad memories for our children. We don’t want bad memories for us.

But I fought those feelings, and planned a party. And we attempted to do it in a way that would be enjoyable for all the kids who would attend, both special needs and typically developing.

The Party

We had it at our church. The room is set up for kids with special needs. The building has an elevator and ramps and a quiet room for people who need a break. Plus, Evangeline knows the space and is comfortable in it. She is used to a lot of noise there and a little chaos because she attends Sunday school every week. I wanted to make sure there was enough room for everyone and that our little one was at ease. This space was perfect. If you don’t have a space like this available in your community, get creative. Maybe a room at the library would work, or perhaps your home is big enough. Just think about how many kids could comfortably fit and then invite like three less.

Evie's 8th birthday

Evangeline’s teacher, Ms. Stephanie, attended! She was a great help and is an amazing advocate for Evie. I’m so glad we invited a few adults who love Evie and who could pitch in.

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We had snacks and mini cupcakes, but overall didn’t make a big deal over food. On the invitation I made it clear that a full meal wouldn’t be provided. Eating can be stressful for some kids, and others may get nourishment through tube feeding, or have certain allergies. So we played down eating and just put out things like yogurt and grapes for people to snack on.

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We threw out the birthday song and candles. Evie doesn’t like it, so we didn’t do it. But I did plan a few activities: coloring sheets on the tables, a ‘pin the hat on Barney‘ game without blindfolds that every child could participate in, even if that meant they needed help, and a dance time complete with “Head, Shoulders, Knees, and Toes” and “The Hokey Pokey.” Again, kids could participate or not, and the ones who preferred being in another room during that time were paired up with a buddy willing to initiate quiet activities or just to hang out. (My husband wants everyone to know that although he could only find neon pink poster board, he still drew a kick-butt Barney free hand.)

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About seven or eight kids attended with their parents, plus our family, and some other friends. We all had a great time! Afterwards, we helped Evangeline open up her gifts one at a time throughout the next few days. That worked out way better than overwhelming her at the party, and attempting to get all the kids to sit and watch. At the end of the party, each child received a goody bag with stuff Evangeline likes; chocolate, a harmonica (kid loves music!), and bubbles. When I throw kids’ parties, I do it Dollar Store style!

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It was a great day! So great, that we were too busy having fun to get any pictures with the birthday girl as a family.

But the memories are in our hearts.

And they are good ones.

Evie

Should you have a birthday party for your child with special needs? A resounding yes. You can do it! When the year is right for your little one (and don’t feel bad if this year isn’t right. I don’t think the party would have been as successful last year. No mom guilt, now. We know our kids the best), just throw out all the ‘shoulds’ you can think of regarding a kid’s birthday party and build it around your child. I’m cheering for you! So is Evangeline!