special needs parenting

Bringing Home Sam

Erica Bode, Ada

“I want to adopt a child,” I told my husband over the phone while running errands. “I want to adopt a child with Down syndrome. Actually, there is this beautiful boy on the Reece’s Rainbow adoption site who I am in love with.”

I have replayed this conversation many times since adopting our sweet Armenian, Sam. Sam was born in Armenia, given up at birth, and lived in an orphanage for four years before we brought him home in 2016.

Before we started the adoption process I knew nothing about Down syndrome. My heart always gravitated towards the beautiful Down syndrome children with almond eyes, chubby fingers, and a gap between the big toe and the rest of the toes. I knew nothing more about Down syndrome then what meets the eye. I knew nothing about raising a child with special needs. And I knew nothing about what it meant to become a parent of a special needs child. And here’s a little secret I’ll share with you – after having Sam for almost two years I am still learning what all this means.

My husband and I had great aspirations of bringing Sam home and changing the life of this little boy. But we never realized just how much we would change. We never realized how much we needed to change to raise this little boy. Sam has made great progress since April 2016, but our parenting had to change to help him be successful. We soon realized that we needed a team of people to help us. We couldn’t do it alone. This new parenting style required us to be vulnerable, humble, and intentional. We surrounded ourselves with some great therapists, enlisted family to provide us with much needed respite, and thanked our lucky stars for some amazing teachers and teaching staff who loved our kid even when he was hard to love. And lastly, we sought out an adoption counselor who helped change our mindset on what it means to be a parent, an adoptive parent, and a special needs parent to a boy who didn’t ask for any of this.

We are still learning, we don’t have all the answers. But the great thing is – we don’t have to. We are grateful for the other parents who share their stories and life lessons. We can only hope to one day pay it forward to the couple who is considering adopting a beautiful child with Down syndrome.

Photo credit: Sydney Kelley Photography

Thinking Outside of the Box

Katrina Curtis, Byron Center

When my daughter Cora was two years old she was still struggling with lack of physical strength, muscle coordination, and core muscle use. She was receiving PT and OT, but we were both frustrated with the results. Cora was doing the same thing over and over at every visit with little improvement. It didn’t help that I would diligently work with her between those therapy sessions on the homework the therapists gave me. I was being a great mama and helping my child improve, right? YES, I was being a good mama, but I was also boring my daughter to the point of frustrated tears on both our parts. I was so focused on her achieving the goals that were given to her that I totally ignored what was literally right in front of my face.

You see, I have been a professional horse trainer for over 30 years and with the birth of my daughter Cora I had taken a step back and cut down on the number of clients and horses that I had in training at my facility every month. Don’t get me wrong, I still rode and worked with others, but Cora was the new priority. She would often be in the in the house during most of my horse related sessions. Once she was strong enough, I brought her out to a play pen near the arena. It was seeing Cora light up while she watched the horses that gave me the idea to get her ON a horse.

You’d think that having her on a horse would have been my first inclination. The adage is true though, that we often don’t see what is right in front of our eyes. Cora started riding a horse after she received the required neck x-ray from the pediatrician. I felt like a failure and a success at the same time. A failure that I hadn’t tried this sooner, and a success because I finally did get Cora on a horse.

Long story short – Cora’s physical strength and core strength increased with the use of a four-legged friend that whinnies. She would ride at a walk gait with a side walker and I would lead the horse while giving Cora little tasks to complete. For half an hour at a time, life was filled with laughter, a child, and a walking horse. I immediately saw improvement in Cora’s strength and coordination.

How? It’s called Equine Hippotherapy and here’s how it works. A horse has a walking gait which mimics a human’s walking gait. As the horse walks and the child rides the horse, the movement that works through the body of the child is the same as the child physically walking. The brain does not process that the child is riding a horse. It instead processes the movements as physically walking and therefore the muscles respond in the same way. Cora is 6 years old now and is still riding horses. The physical strength and coordination this kind of play offers has been wonderful for Cora’s progress.

One of the greatest blessings that this journey with Down syndrome continues to teach me is to look outside of the box for the answers that Cora needs. After all, Cora doesn’t do anything the usual way. She traditionally finds her own way and achieves a goal in her own time. Another thing this journey has taught me: Cora will achieve any task handed to her if given the respect to achieve it in her own time.

If you are stuck in a rut with your kiddo’s therapy, think outside of the box. A task usually has at least five ways of getting it done. Society has taught us that there are only two ways to do something – the right way and the wrong way. I encourage you to shake that theory up a little bit just like our kiddos do daily. That extra chromosome they were born with? It comes with a “thinking outside of the box”, “watch while I do it upside down and sideways” genetic makeup. It’s a positive attribute in a stringent world.

Down syndrome is a blessing which allows us parents many opportunities to walk along side our kiddos and ENJOY life – one moment at a time. But, we should remain open to the unseen blessing that will be delivered in a different way. And if a horse is involved, even better!

Katrina Curtis and her husband Scott live in Byron Center, Michigan on a few acres they call We-N-Us Ranch. Their slogan is “Where Courageous Kids and Special Horses rub elbows”. If you would like more information on Equine Hippotherapy and getting your child involved, you may contact Katrina on her Facebook page or email her at plexuskatrina@gmail.com.

To My Daughter’s Heart Surgeon – Lindsey Kloeckner

to my daughter’s heart surgeon,

my daughter was born with Down syndrome.
and as many other children with that beautiful extra chromosome,
she was also born with a congenital heart defect.
a sizable ventricular septal defect,
more commonly known as a VSD.

we met with you prior to her surgery.
we wanted to interview you and ask all of our questions.
you humbly answered each one.
you took your time.
and acknowledged our mommy and daddy hearts.
acknowledged what a big decision this was for us.
and for our family.

you gave us your personal email address,

and encouraged us to email you with any additional questions that we had.
you told us that no question was too small,
and encouraged us to ask as many as we wanted.

we emailed you on three different occasions,
and you responded.
answering one of them within twenty minutes!

you calmed our frightened hearts.
and we scheduled the date.

and a week ago today,
you fixed our girl’s heart.
i know it was just a typical tuesday at the office for you.
but for us,
it was a monumental day.
one that we will remember for the rest of our lives.

and when you came into the family lounge,
to give us an update at the end of her surgery,
i asked if i could hug you.
i hope it didn’t make you feel uncomfortable.
it was the only way i could think to thank you in that moment.

you see,
you didn’t just fix my daughter’s heart,
but you fixed mine, too.

as it turns out,
i also have a heart defect.
but the hole in my heart is hidden.
it can’t be seen by the trained eye of a cardiologist.
or by the hands of a skilled heart surgeon, like yourself.

i didn’t know the defect was there until she was born.
i could feel it the first time i held her.
a hole in my heart.

a hole that kept a distance from people that were different than me.
a hole that made me look at other families like mine with a shred of pity.
and the thought, “oh that must be so hard.”

my defect can’t be fixed with a surgery like hers.
it can only be fixed with education.
and the understanding of others.

before my daughter was born,
i was nervous around people with disabilities.
i didn’t want to say the wrong thing.
or be offensive in anyway.

and over the last seven months,
she’s forced me to acknowledge my heart defect.
she has stitched it up.
day by day.

she is educating my ignorance,
and is healing my heart with shattered expectations.
and a smile that radiates pure joy.

so you see,
while you were fixing our daughter’s heart,
you were making sure that she could continue to fix mine.

her work isn’t done.
not in our family.
or in our community.

we know that the sky is the limit for our girl.
she is going to grown and thrive.
she is going to do great things.
and she will continue to help us heal our hearts.

because i know that lots of other people have holes in their hearts,
just like mine.
and together we can fix them.

so thank you.
thank you for fixing her heart.
for saving her life.

it is because of her,
that i now look at ‘typical families’ and think,
“you wish you had our girl.”

thank you.
thank you.
thank you.

lindsey-natalie

You can follow Lindsey’s journey on her blog, Things I’m Learning Now.