How I Parent: This Mom Wants You to Know that Down Syndrome Doesn't Define Her Son

How I Parent: This Mom Wants You to Know that Down Syndrome Doesn't Define Her Son

Name: Becky Bindernagel
Location: Orange Cove, California
Occupation: Consultant/Grant Writer
Family situation: Jacob (a.k.a. “JJ”) is our only child, unless you count our dog (his partner in crime). Both Daddy and I work remotely from home when we’re not traveling for work. JJ goes to regular school in a regular classroom where he’s mainstreamed all day and his grandmother works as his aide. Both sets of grandparents watch him in the afternoon after school.
Parenting “philosophy” in a sentence: Be open to new possiblities and adventures along the way. I wish people knew that no matter what my son goes through, he is probably the happiest person alive — full of smiles and energy. He gives people that special feeling when he hugs them. I would love for people to know that there is a spectrum with Down syndrome, just like many other disorders. Just because my son has Down syndrome doesn’t automatically mean that he is going to be delayed in one area or the other; he’s absolutely no different from the rest of the world. Please don’t write his future for him; Down syndrome does not define who he is.

What was your journey to having the family life you have today?
My husband and I were in our late twenties when we got married. Soon after, we decided that we wanted to start a family. But after trying for about a year, I was diagnosed with a pituitary tumor and I had to get surgery to get my pituitary gland removed. The neurosurgeon that we had worked with knew us on a personal level and told us that he was going to try every way possible to leave the healthy part of the gland in place so that we could get pregnant on our own. But he warned that having children after the surgery would take longer, and it did.

It took us 10 years to get pregnant. We went through two unsuccessful IVF procedures, different types of fertility treatments, shots — you name it, we tried it. We went all the way up to about $33,000 in debt and nothing seemed to work out. At the very end of it all, we decided that we were going to adopt. As soon as we got the approval from the state for our application, we started interviewing with mothers. Then suddenly, during that time, we found out that I was three months pregnant.

We were totally ecstatic about it and felt like two teenagers that got in trouble when we asked the doctor, “How the heck did this happen?” He laughed at us and said, “Sometimes, these things just happen.” Finally, after 10 years, I was pregnant and we were so happy and excited. But it’s funny how certain dates just stick with you … On September 28, 2009, we got a phone call from the genetic counselor from our doctor’s office saying that something was indicated in the blood test that we both took with the baby. He said our child had a 90-something percentile of being born with Down syndrome and from that day on, everything changed. It was quite devastating.

Although the news was hard, it didn’t take away from the fact that we were finally going to have a baby and we were going to see it through. My husband and I, along with my parents and his parents, went to counseling all the way up until delivery. We wanted to be ready. We researched, we talked with other parents, we joined a support group, met with the pastor of our church. We really involved both sides of our family and let everybody know about what was going on. It was a journey that we weren’t on by ourselves:  Everybody went on that journey with us and that was one thing that made all the difference in the world. Everyone couldn’t wait to meet him. At that point, it didn’t matter that he was going to have Down syndrome. What mattered was that we were finally going to have a baby after trying for so long.

How did your upbringing influence your parenting style?
My husband and I come from a family that’s very rooted in Christian values. I have a younger brother, who is adopted. I also had a sister who was born before me but was a stillborn so my parents pretty much went through a similar journey, struggling to have that first child. My mom eventually got pregnant with me and since they knew at that point they wouldn’t be able to have more children, they adopted my brother. It was funny because when we started filling out paperwork for adoptions, the agency asked me so many detailed questions like, “What type of child are you willing to accept?” My mom and dad were like, at this point, you just don’t care. We also didn’t care. As long as the child was healthy, that’s all that mattered to them and for us, we were going to accept whoever was going to come our way, too.

Once I was pregnant with Jacob and we had to tell my parents that their first grandchild was going to have Down syndrome, they were shocked. They were hurt. But, after the news settled, the first thing my dad said to me over the phone — and this still sticks to this day — is that it doesn’t matter. He’s my grandson and God was going to see us through. God has plans for his life no matter what, and my dad still repeats this today. Now my dad and my son are best friends.

What’s your favorite thing about parenting?
I would say the snuggles and the never-ending hugs and love that I get from him. I love when he looks up at me with those soft brown eyes whenever he asks, “Why Mom? Why can’t I have it?” His cute attitude and personality seem to develop from week to week.

A little while back, we lost our home during the California wildfires. Since we’ve been displaced, he’s been at a new school and we love how quickly he’s been able to make friends. Everybody wants to be his friend. It’s so darling how the kids support and encourage him to participate in things. He recently performed in his first Christmas program, singing onstage with the rest of his class!

Now that he’s nine and enrolled in school, I’ve been working to advocate for Jacob to be in classes based on his developmental level, instead of his age. At 9, he should technically be in third grade, going into fourth grade but developmentally, he’s not ready for it. We want Jacob to learn and we want him to retain what he’s learning so he can continue to build on that.

It took us several months to convince the school district and eventually, the county got involved. We told the adminstrator straight up, “We want him to be in an educational environment but we also want him to learn at the same time.”

The teacher he’s working with now sees that potential in him. We know that he’s coming along just fine, his own way; he’s just beginning to reach a second grade level. That is perfectly fine with us because we know deep down, he can do it.

What’s the hardest part?
The hardest part is having patience. When I graduated from nursing school, my instructor gave me a pen that I still have today. It says, “Grant me patience Lord, but hurry.” That’s what I think about when it comes to my son. We knew from the very beginning that developmentally, he was going to be delayed. We were ready for that but sometimes, I would get so anxious. I remember wanting him to roll over or to sit up or to start eating on his own or to start talking. I had to learn to work with his timeline and to have the patience to deal with that. But we also celebrate every single milestone because they’re all milestones.

When people say he should be at this level at this age, we had to toss that out the window and say, “You know what, he’s on his own schedule. He makes his own time.” We always try to encourage him and help him along the way, and we’ve done that in more ways than one. Many, many times we’ve told him, “Jacob, if you want do this particular thing, you have to do it. Mommy and daddy can’t do it for you.” He’s come to understand that because he works so well with others and does well just watching them. He started eating on his own when he saw his other classmates using a fork and spoon. He just picked it up and started doing it. Learning from his peers has been awesome but having the patience to wait for him to want to do it — that’s probably the hardest thing.

How do you find time for yourself and your relationship?
For my husband and I, we’ve always considered time with Jacob as our own personal time. We usually plan our trips around him and we love seeing how he reacts to new places. That’s our family time and no one can take that from us. We travel with him quite extensively. He’s the greatest traveler. We’ve taken him to the Philippines twice, to Korea, to Mexico, to Canada, all over. It’s so funny because he knows the routine. He carries his passport in hand and gives it to the customs agent, says thank you and goes on his way.

What’s the best advice you can share with new parents?
The biggest things are having patience and not limiting yourself or your child. There were many times when I thought, “There’s no way he can do this,” but my husband would take my hand and say, “He can do it and he will do it on his time.”

He has so much potential and sometimes, it’s easy to get trapped in that box that says he has this particular disability and he’s only going to be at this level. That’s wrong. You, as a parent, and he or she, as an individual, are responsible for setting what that level’s going to be. When my son is ready to decide what he wants to do in the future, we’re going to work on it together.

This coming summer, he’s going to camp for the first time. I’m having a hard time with it but there’s a special needs camp up in Idaho that we’re going to send him to and we’re excited. Anything new that he loves to do, we want to try it out. We want to see how he does but I think as any new parent, I know it’s hard. For me personally, I had to put all those worries and negative thoughts aside so I can prepare him to be ready for whatever he wants to try.

How do you embrace the most unpredictable moments of parenthood?
We do it with a lot of laughter. There have been so many times when Jacob has done something unexpected and we just have to laugh about it. We laugh because sometimes, he shows us that he knows more than we do. But again, a lot of patience is key. We used to keep a notebook of little milestones or things that he’s done. We would keep a record of things so we could keep tabs on how he’s doing and share that with his physicians but these days, it’s hard to keep up because he’s growing so quickly.

What would you want your kids to say about you as a parent?
I would hope that he would say that we’re funny, that we love him, and that we never held him back with anything he wanted to try. That we were the kind of parents who hopefully gave him the world on a platter and it was just up to him for the taking.

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