Either way, a Gift

Most families who are blessed with a baby with Down syndrome come into that wonderful world by giving birth. Others feel led to adopt a child with Down syndrome. Either way, it seems to be a calling and a blessing.

For us, the suggestion came in stages. In 1982 we had an adorable 4-year-old neighbor with Down syndrome, her name was Wendy and I thought she was amazing.

In 1989 my first sight of our premature infant with upturned eyes caused me to ask, "Does she have Down syndrome?" and although she didn't, the seed was planted in my mind that it could happen.

In 1997 I noticed a black and white photograph of a beautiful Latino boy with Down syndrome in the book of waiting children at our foster parent training classes in Portland and I wondered secretly in my heart, "Why is this beautiful toddler still waiting? Could we parent a child like this?"

Finally, also in 1997, after having tried for 7 years to adopt from various programs without success but having finished this second round of classes, my husband and I sat together in the temple, praying sincerely, asking specifically, "Heavenly Father what kind of child should we adopt?"...... an impression came to my husband's mind that we should "learn about Down syndrome and other syndromes like it".

So we did.

We read books and watched videos about Down syndrome. We had to make another move at that point to another state and then went through a new round of foster/adopt classes. We went to Buddy Walks and conferences where we could meet parents of children with DS. We met children and adults with Down syndrome. Everything we heard and learned was positive. Every parent said that at first they went through a grieving period but then realized how much joy they felt in knowing and loving their child with special needs; they all felt that their child was a gift from God.

So we let our social workers know that our hope was to adopt a baby with Down syndrome.

At first we met with a lot of resistance from the agency, our friends and some of our family. We were so surprised and disappointed at that! But eventually we understood that our family just wants to protect us from pain and social workers want to be sure we are sure... a large family wanting to adopt was new to them, and that we wanted other than the healthy infant surprised them. To anyone who has not [yet?] been called to adopt a child with special needs, it's all such a new idea, so foreign.

But we felt led to do it.

And yet there were times that I had fears. I worried that there would be things I would find intolerable. Silly things, like the way children with DS tend to purse their lips. I wondered if I was really up to all of it, the therapies, the medical issues. I prayed a lot for courage and strength. Of course the drive to adopt continued. We went through more disappointments before finally being blessed with our first little son with Down syndrome. What an amazing journey it has been to parent him and in subsequent years another son and daughter, also with Down syndrome.

Since adopting, I've learned that all of the little things that I worried about are truly of no importance. I love everything about them! But I do wish they could be spared any pain or illness. I suppose every parent wishes that for their children. I feel that way about all of my kids, whether they have "special needs" or not.

The truth is, all kids have some sort of special need.

We can't predict what child may be given to us through birth. Or what may happen during their lifetimes, or how they will turn out. We can do the best we can, teach them what we know we should teach them, help them the way any loving parent would, always praying and hoping for the best. It takes faith and courage.

And likewise, for a birthparent who is not prepared to parent a child, it takes a lot of courage to make an adoption plan for that baby. We love our little ones' birth families, even though we don't know all of them. We understand the true love and strength it takes to place a baby when that's the best plan for the baby. We are forever grateful to them for giving our children life!

What do children with Down syndrome look like?

You probably recognize people with DS in your community by their appearance. The most common identifying feature is their eyes, which are often upturned at the outer corners, but not always. They usually have epicanthal folds which gives them sort of Asian-looking upper eyelids. They often have some puffiness below their eyes. And when they smile, their eyes often take on the shape of little crescent moons. Like this photo of a younger Joel, at top. Irresistible!

They have small noses, small ears, a narrow roof of their mouth which can make their tongues seem larger and often their arms and legs are shorter than average. Typically, a person with Down syndrome is fairly short. They usually have a simian crease, which means that they have one line horizontally across the palms of their hands. There is also usually a gap between their big toe and the others. Lower muscle tone throughout the body and mouth is a component in Down syndrome and plays a part in the fact that they can understand language long before they can speak. For this reason, physical, speech and occupational therapy is very helpful to babies and children with DS, as is teaching them sign language.

There are also some medical issues commonly associated with Down syndrome. Probably about 50% of children with DS are born with a heart defect ranging from a small hole that will heal on its own to no separation between the large chambers or several heart defects altogether. With our three, we got one of each situation. There can also be vision and/or hearing deficits. More often than not, a child with Down syndrome will have some strabismus or lazy eye which can be corrected with glasses, eye patching or surgery.

Associated with the lower tone and small ear canals comes the "lower tone" immune system, which means that children with Down syndrome tend to get colds and ear infections more easily. Often they have trouble with fluid in the ears and need ear tubes. Almost all kids with DS will need their tonsils and adenoids removed to help them breathe and sleep easier.

Oh, I almost forgot to mention that Down syndrome happens at conception when the cells divide. Somehow the baby gets 3 of the 21st chromosome instead of 2, so he or she ends up with 47 chromosomes instead of the typical 46. Those of us who know a child with DS like to think of this as being "chromosomally enhanced". Although every person with Down syndrome does have some level of intellectual disability, each reaches milestones and can learn. Most persons with DS are considered to be in the mild to moderate range. All have great potential to learn and develop if given the right helps and the love of a family. Each has an enormous spirit and great ability to touch the hearts of others.

Did I tell you how much I love these kids?

I've written a little book from the child's point of view, explaining why we love them so much, or why they are so loved in families. It was my intention to save up and have it printed to send to orphanages overseas where situations are still 30 to 50 years behind the US, where they are not yet keeping their kids with special needs in families but abandoning them to institutions.

Let me try to explain briefly what I see in these children that makes them so special to me.

First of all, their openness. They are without guile. If they enjoy something, they let you know and share their joy. If they don't like something they let you know. They love unconditionally. They also can be very stubborn, which is a survival characteristic. If you had to work as hard as they do to learn to walk and talk, you'd also have to be as stubborn and determined. They keep trying and I admire their tenacity and joy at success! One of the greatest things about these kids is that they help us slow down and see the little things that we take for granted. The things that are really most important. They teach us compassion. And they make us laugh!

I know we've only just begun and there are many years ahead of us. Those of you reading this who have raised children with Down syndrome beyond the years we have will have a lot of advice for us. Good! And there are more helps and discoveries every day! For instance, life-saving heart surgeries that weren't even available in the past are now performed several times a day in hospitals across the nation.

I hope if you have any questions you won't be afraid to ask me. We are far from perfect but we try very hard to be good parents to all of our children. If you're interested in adopting a child with special needs, take a look at the sidebar for some excellent links. I can also give some suggestions on specific agencies. This may be the longest thing I've ever written but I've invested my heart in finding homes for orphans who are amazing children like mine, so full of potential, just waiting for families.

I hope this post has helped someone in some way to understand why we love children with Down syndrome. Whether they come into your family through birth or adoption, they are a gift!

Thank you for reading and God bless!