fter a total of 140 rejections, 33 in the first month, by New York's biggest publishers, Jack Canfield and Mark Hansen found Peter Vegso, President of Health Communications Inc. Peter understood what Jack and Mark were trying to accomplish and took a chance on something most publishers said wouldn't sell – Chicken Soup for the Soul.
Named after grandma's chicken soup and for how the stories would ease the soul, the Chicken Soup books have sold over 80 million copies with 65 titles in 37 different languages. Not only did Chicken Soup for the Soul win the ABBY (American Booksellers' Book of the Year, based on books that booksellers most enjoyed recommending to their customers), in 1995, it was ranked #5 by USA Today in their list of top 25 books that have had the biggest impact on readers and the publishing industry in the last quarter century.
Not long ago the staff of WOW! proudly announced our Contributing Editor, Chynna Laird's essay Kids Amaze Me was included in a recent Chicken Soup release titled Children With Special Needs.
Having had my own "special needs" child, I know the difficulties Chynna faces each day. So, when pondering this month's Inspiration feature, Chynna and Chicken Soup seemed to be the perfect fit. Little did I realize just how inspiring her story would be. Sit back, relax and join me as I chat with Chynna.
WOW: Chynna, thanks so much for taking time out of your busy, busy life. Working with you, I've gotten to know you a bit, but how about telling our readers about yourself.
Chynna: I don’t know how far back you want me to go, but I’ll start with my feelings about motherhood and children when I was a little girl. I was never one of those girls who dreamed of getting married and having babies. In fact, that whole scenario terrified me.
My mother suffered with undiagnosed mental illness (bipolar) and alcoholism—both of which stemmed far back on my mother’s side. Mom was adopted and, once she found her birth family, we found out a lot of things regarding our health history. I decided quite young if such things floated around in our family genes, they would end with me. That didn’t mean I didn’t love children or had any maternal instinct—I believe I did.
I was the neighborhood babysitter; all the parents around us called me to sit with their kids. I was the oldest of six siblings (one full brother and four half-brothers and sisters) and adored them all. To psychoanalyze myself, perhaps I wanted to smother children with love I starved for when I was growing up. That’s all children want: love, hugs, kisses and giggles. But I felt more of a yearning to be a Mom when the choice to be one was taken away.
When I was in my late teens, I was diagnosed with cervical cancer. It was caught early enough that not much damage was done, but it still affected my ability to conceive a child or carry one. A few years later, it was discovered I also have a bicornuate uterus (in a nutshell that means my uterus folds down into two chambers instead of having just one big one.) This double-shot, I was told, would make it very difficult to conceive and carry a child to term (if the pregnancy even lasted beyond the first few months). Again, even this didn’t hurt me too much—until I met my fiancé Steve.
When I looked into his beautiful brown eyes, I knew I was supposed to have his children. I just knew. But with my health history, and the odds against us, we decided if my body wasn’t able to conceive and carry a child on its own, we’d adopt. After over two years of trying, I got pregnant. Jaimie is truly my “miracle girl.”
Photo (left to right): Jordhan, Xander, Jaimie
WOW: She sure is! In your Chicken Soup piece, you tell us Jaimie has SID. Tell us about Jaimie and just what is SID? How does it affect her?
Chynna: Jaimie is a beautiful, strawberry-blonde beauty with ocean blue eyes and white, porcelain skin. I often describe her as the spitting image of one of those babies from the 1800s we always see in black and white photos: wide-eyed with no facial expression. And her smile—when she lets you see it—lights up her whole face. She’s like every other five-year old: she loves to sing and dance, she cops an attitude when she doesn’t get her own way, she fights with her sister and loves beautiful things. But she fights things nobody else can see or hear and it’s torturous as a parent to watch her struggle.
Jaimie has SID, or Sensory Integration Dysfunction. SID is a neurological disorder targeting the autonomic part of the nervous system. This is the area controlling things your body does automatically without you being consciously aware of it. Essentially what happens is Jaimie’s brain takes in sensory information from her environment—the same way ours do—but instead of being processed and told where to go the information gets “scrambled” and the brain gets confused. And because the information is scrambled (or confusing), her brain perceives it as a threat. THAT’S what causes her to freak out. She has no filtering-out ability so not only does everything come firing at her at once (and doesn’t go anywhere), but her sensory organs are all screaming, “What IS this sound/smell/taste, etc.” all at the same time, she gets overwhelmed and melts down.
Usually I explain it this way: Picture yourself in your kitchen when suddenly the phone rings, the microwave goes off, your kids are running around you screaming, one of them flashes a flashlight in your eyes and you smell something burning all at the same time…what would you do? I know I’d scream, “STOP!!” That’s how Jaimie is every single day.
I knew something was wrong with her when she was very young—an infant. But being a first-time Mom I was told not to “read into things” and she was “just spirited.” At six months, Jaimie would scream endlessly and our hugs of comfort only seemed to worsen her yells. Seriously, it was like we were hurting her--the screaming was that piercing. One night after hours of walking with her I sat in the middle of our dark living room and placed her in front of me on the carpet. She settled down in a few minutes. When I tried to pick her up again, she yelled bloody murder. That was the alarm bell for me. But no one listened.
It got to the point Jaimie tried to pull her ears off, scratched at her skin, pulled her hair, scratched at her eyes or even whacked her head on the floor to stop…whatever it was that she fought. She was non-verbal too so she wasn’t even able to say, “I hurt” or anything. She became structured in her routine and something as small as a tag in her clothes or the ripping sound of her diaper Velcro set her off. I cried rivers of tears. It took until she was about two-and-a-half to find someone to listen to us.
SID affects Jaimie in many ways. If she’s seeking sensory stimulation, she runs around, spins and needs A LOT of noise and distraction. That can be stressful on the rest of us. When she’s avoiding sensory stimulation, she’s almost “zombie-like” and won’t want to leave the house. She’s frightened of her environment because things we don’t even notice actually cause her physical pain and distress. For example, think of a beautiful light breeze on your skin; on Jaimie’s, it’s like thousands of caterpillars crawling on her that she can’t get off (that’s why she scratched herself all the time and wore long sleeves so she couldn’t feel the hair on her arms move).
It’s also made her socially dysfunctional because she has no idea how to relate to other children. She can’t deal with people touching her, sitting too close to her, certain pitches of people’s voices, even the way a person’s face looks to her or moves when they talk to her scares her. She’s also been diagnosed with Social Anxiety, Separation Anxiety, General Anxiety and OCD (obsessive-compulsive disorder) because of her need to have things in order and using compulsive actions to relieve her obsessive thoughts.
It’s affected her relationship with us, too. Only once in her entire life has she ever hugged me. Usually she just sticks her head on you and says, “hug,” because she can’t deal with being close. And she has no relationship with her Dad. We’ve never been able to figure out why—she just can’t handle him being gentle with her, or talking to her and can’t stand him doing things for her. She’s relied on me for everything because I know her so well (but even I can’t predict what she needs or wants at times). So we aren’t able to comfort her, or cuddle with her…any of the beautiful forms of affection parents love to experience.
WOW: I'm so glad you finally figured out just what was wrong. Her SID must make life so different from what we think of "normal" family life. How have you and the rest of your family adapted to deal with a "special needs" child?
Chynna: Expanding on what I said above, I spend a lot of nights crying. I wish I could just make her SID go away. I watch her on the other side of the windows when I drop her off at Preschool (a HUGE step for her, by the way) and sometimes all she’ll do is rock and talk to herself. She does that sometimes to “tune things out.”
Steve was very hurt by her reactions to him. But I’ve always told him to keep telling her he loves her. She may not want it now but it’s important she knows he still loves her, despite everything. That’s crucial.
Jordhan, our three-year-old, LOVES her big sister. But Jaimie takes her aggressions out on Jordhan a lot. All Jordhan wants is to be like her big sister: play with her, hug her…but Jaimie can’t always deal with it. BUT…when Jaimie does hug, it’s Jordhan she hugs. I find that wonderful. They’re good friends but Jordhan is scared of her at times. That rips my heart out. She seems to be okay with our baby boy, Xander, but when he cries or screams…Jaimie can’t deal with it.
It hurts not to be able to love her the way a parent is supposed to but we’ve found other ways to help her show us. We play a game called, “The Touching Game” on her “seeking” days. That’s where I take my pointy finger and gently rub the bottoms of her feet, her hands, legs, arms, tummy and back. And recently, she’s let me add cheeks! That’s big! But she’ll only let me do it.
When she was very little, our whole lives revolved around what she can deal with. But that isn’t going to help her cope with her world. Yes, there are still days where all we can do is say, “Okay, Jaimie. Let’s just stay inside today. We’ll try to play in the front tomorrow.” It’s all about baby steps and applauding any attempt she makes to try something out of her comfort zone (which can be something as basic as going to a new park or visiting someone!).
WOW: Do you ever just get "you" time alone? ( I know this really helped me even though I could never get away from reality.)
Chynna: I don’t get a lot of “me” time. And I know I should really take it. I guess I’ve always felt that since I’m the ONLY one she turns to; the ONLY one she trusts; the ONLY one who can calm her down; I’ve just felt I’ve always had to be there…in case she needs me. But it’s trying. And it can make me lose patience.
So I’ve started doing things I enjoy—but haven’t ventured too far away. I guess it’s something I need to do too. I can’t be the best Mommy I can be if I’m tired, cranky and stressed. It can make a person resentful. And it’s not Jaimie’s fault she is the way she is.
I work through a lot with my writing. That’s saved my sanity in so many ways.
WOW: Speaking of writing, how has having Jaimie influenced your writing and career choices?
Chynna: I wrote in many different genres at first. But I get most satisfaction from inspirational and writing about/for children with special needs. I want to help people with my writing. I want to help people see that just because we have struggles, we can use them to be strong and inspire others.
"The one thing I’ve learned from Jaimie is not to be afraid of feelings."
I’m also going to school to become a Developmental Neuropsychologist (try to say that five times fast! Haha). That’s someone who studies the brains of children. I want to see if I can figure out what causes SID or what’s different in a child’s brain with SID, Autism or Autism Spectrum Disorder as compared to “normal”—I don’t like using that word—children’s brains so we can figure out the best way to treat, teach and help them. I’ll be in school until I’m 100 but it’ll be worth it if I can help these children.
The one thing I’ve learned from Jaimie is not to be afraid of feelings. That’s what I must teach and remind her so I have to practice it myself. Embrace them, express them, allow them to fill you up but always remember to channel them properly. I was an angry person for a long time. Now, I’m grateful for every moment I have.
I’m writing both a children’s book (called, “I’m Not Weird, I Have SID”) and a “help” book about my life with Jaimie. These are my small ways to help and give back.
WOW: Jaimie sounds like a wonderful little girl and a special blessing in her own way. For the many others out there who have special needs children in their lives, what would be one bit of advice or piece of encouragement you can share with us?
Chynna: I don't think I could give other parents advice—every child is so different and so are their needs. But I think if I could give any words of encouragement it would be to know that no matter how desperate times may seem, no matter how much we ache when our child struggles, even on the most frustrating day when we think no matter what we do, nothing is making a difference...it is. Our presence in their lives means so much and gives them strength.
Jaimie's worst sense is touch. As I mentioned, it is so difficult because I've never been able to revel in the basic and most simplest form of bonding a mother has with her child: being able to feel their child's tiny arms wrapped around us. After months and months of different therapies, counseling, assessments, Jaimie still resisted touch and would have fits lasting for hours where all I could do was sit and watch as she screamed, yelled, and cried. All I could do was shove a pillow under her head to cushion blows between her head and the floor and make sure she didn't hurt herself in any other way as she tried to calm herself the only way she could. My heart ripped out every single day because I couldn't calm her or comfort her because even the offer of my touch was enough to send her into an inconsolable rage.
"Our presence in their lives means so much and gives them strength."
One day—just before Christmas—she was watching a movie with her father when she heard me come into the room. As she ran to me I knelt down so she could put her head on me and hug me the way she always felt comfortable (putting her head on me and saying, "hug." But to my surprise, she threw her arms around me and hugged me—a real hug!—then she said, "I love you, Mama." She doesn't do it often and rarely lets me hug her back, but that was the most wonderful Christmas present I ever had.
From that experience I can tell other parents this: never, ever give up hope or think what we do for them isn't working or is meaningless. They know we're there, even if they can't say so, and it matters.
WOW: I want to thank Chynna for letting me have a small glimpse into her inspiring life. This past month while working on this piece, I've let the special needs children featured in Children With Special Needs teach me about the beauty of broken shells. I've discovered the kindness of strangers who have also been touched by these wonderful children and been reminded that true beauty is often hidden inside.
“…the beauty of broken shells… true beauty is often hidden inside.”
There was a time when children with special needs were considered retarded and locked away from the world. Thankfully, our perspective has changed. We now embrace them for the special blessings they are. And while I'm not an expert on why this change happened, I think part of it has to be because people lowered self-imposed barriers and let those special needs children touch their lives.
I want to encourage each of you to purchase your own copy of Chicken Soup's Children With Special Needs. Not only will you be blessed by the stories within, but part of the proceeds from each sale goes to the Bubel/Aiken Foundation. The goal of the Bubel/Aiken Foundation is to create communities where all children can live, learn and play together. To learn more about them, visit their website BubelAiken.org.
Visit Chynna’s website at www.lilywolfwords.ca