Many of us woke up this morning with the need to find “joy”. These have been troubling days to experience - full of questions and “unknown”. Fear can make it tough to find a different perspective to feel joyous about.
Well, I happen to know of a young man who can teach us the proper technique for gaining a fresh perspective. His name is Simon, he is 5 years old, and I recently had the pleasure of sitting down with his mother, Mollie, to learn about their family. Before I tell you more about our conversation, let me first share Simon’s proven method.
It’s very simple; you stop, turn around, and look upside-down between your legs! Right away you have a brand new perspective to examine. Simon can also recommend placing your head in flowers to soak in extra joy! Go give it a try – and come back to read the rest.
Now that you’re feeling refreshed from your experiment, let me explain more about why I wanted to interview Mollie in the first place. I’ve known of Mollie for nearly 3 decades. We both grew up in the same community. Our paths crossed here and there as we grew older, got married, and had children. Our children attended the same preschool, and it was during this season that I really “attuned” to her unique gift of projecting truth and real life in such a way that it is positive and teachable. (as in “I want to be like her when I grow up”)
This is why I wanted Mollie’s perspective on a topic that is very important in my work: parenting children with special needs. Mollie’s youngest son, Simon, has a down syndrome diagnosis. I wanted to be able to share with those who don’t know, want to know, think they might know, etc – “what it’s really like” to parent a child with special needs, specifically a child with down syndrome. And I wanted to do so in a way that was truthful, non-sugar coated, yet told from the heart of Christ.
If you follow Children of the World, our founder Pat Lee, or have a connection one way or another with our agency – you’ll know that we are an adoption and relief organization with a focus on meeting the needs of children. The vast majority of children in orphanages, internationally, are considered “special needs”. For one particular diagnosis, down syndrome, I’ve come to realize that there are deeply rooted anxieties about the “needs” these children have, and what those could mean for the family who raises them.
In China alone, there are currently over 1,550 waiting orphans, diagnosed with down syndrome. Many factors contribute this large number. Yet, there is no denying that most adoptive families are not “seeking” to bring home a child with down syndrome. (True, there are some) Today, World Down Syndrome Day, let’s take an honest look at some of the challenges and joys having a child with down syndrome could bring into your life.
“Yes, it is a lot of work, and sometimes it can be super stressful and worrisome. And sometimes it’s really frustrating. But the Joys!”
Tell me about a situation or circumstance that you could say would “embody Simon”.
“The whole sensory world is his language.”
Well, just today when I dropped him off at preschool actually. One of the things he’s in to right now is inverting himself to look at things upside down. It’s almost like a little baby yoga pose. We say “oh there goes Simon doing his baby yoga”. But he wants to look at things upside down. He’ll look at something, turn around, make sure it’s lined up, then turn onto his head and look between [his legs]. And that’s just kind of his thing. It’s started this whole dialog between his teachers, and others in the family where we all say “what does Simon need to see upside down now?”. It’s just so interesting – because that’s not something you see typical kids do, you know? He’s found something that he finds really interesting. Being different, or people staring at him – he’s just completely unaware of that. So he just does it.
And what’s really beautiful about him being in public school, is that the kids who are in school with Simon, this is now just totally normal to them. It’s just really interesting to see the way he likes to feel and experience and see the world. He doesn’t have much need, in terms of thinking in an abstract sense. Everything is very very literal and physical. He wants to see and feel things. The whole sensory world is his language.
Parenting in general can bring about fears. Were there any fears you had, or have, specifically related to Simon’s diagnosis?
Oh of course! For the most part, it didn’t take long to realize this didn’t need to be a negative.
Initially there was shock. (Mollie explained that she and her husband were not aware of Simon’s diagnosis until after birth) We thought at first “this must be a really negative thing, and our family is going to change in a negative way”. But it really didn’t take much time to wrap our heads around “He’s a human, not a diagnosis.” He may have differences - but at the end of the day he needs the same things that everyone needs. He needs acceptance. He needs to be supported and loved. And we can do that – and we’ve been doing that ever since.
“I just have to trust in the love that we are building for him, and the life that we are starting for him.”
There are challenges. If I get caught up thinking about the future – when I’m older and he’s an adult, that’s when I might start to worry again. But I just have to trust in the love that we are building for him, and the life that we are starting for him. Whatever it is that he may need in the future, I just have to trust that our path that leads us from here to there will be more than enough.
What has been the biggest misconception you would like to “put to rest” about parenting a child with down syndrome?
There hasn’t been anything our family has had to change or give up in a negative sense. There have been no big lifestyle changes. We’re still outside, being active, out on the boat. It’s a huge misconception out there – that you have to give up so much. Or that your other children will have to sacrifice. Simon just comes along, like any other child or brother would.
Now, I will say – families can have a child with additional medical conditions. There is a long list of medical conditions that people with down syndrome are at higher risk for. You do sometimes see children who need medical or stability equipment. Simon does not have any of these needs. But, I can see where families who are facing some of these circumstances might initially feel overwhelmed, and expect negative changes.
I feel like we mostly look for barriers before we look for options when faced with something new. I often tell families to really reflect on the limitations they are placing on these children. Where are they coming from? Possibly misconceptions or lack of knowledge? Before a door is closed on a particular opportunity look at all options. And even if the answer is “no” or “this will need to be changed”, be open to the idea “maybe this isn’t a negative”. Maybe it’s simply “a change”.
“It’s a huge misconception out there – that you have to give up so much.”
Where can you see the impact Simon has on others?
In terms of my two older boys, and what it’s like to have Simon as a baby brother – I always tell people, “If every household could have a kid like Simon, or child with some type of difference, just how much better off everyone would be.” Because, it just creates this “normalcy” that’s not “normal”. It shatters the idea that things need to be about achievement. It just shatters that whole perception, which is a really powerful and beautiful thing.
“ It just shatters that whole perception, which is a really powerful and beautiful thing. ”
And in the preschool, with the kids that Simon is around, no one is having to teach them to be patient or to be kind. Teachers aren’t saying “oh make sure you’re extra careful with Simon”. It’s just this natural instinct. Because they’re so young they haven’t built up these perceptions yet. They haven’t created this idea of “oh that’s weird” or “things that are weird, we need to stay away from”. So, accepting differences is being woven into their normalcy.
Tell me some challenges for you, as “mom”.
He (Simon) does get a lot of my attention, in the same way that a toddler would. Because of his delayed development, he’s still in the “toddler phase” – and toddlers require a lot of supervision. For example, I cannot let him play outside unattended. He could walk out the gate or get into an anthill. Sometimes this is a struggle – because I do have two other children. Simon’s phase of needing mom’s full time attention is longer lasting. So, I try to make intentional space for my other boys, or in other ways. I do stay mindful of never ever wanting them (Simon’s brothers) to resent the extra time that he needs.
But I have to say, my oldest is a really beautiful caretaker for Simon. He’s just super proud. He’s proud of Simon being different.
Next year the three of them will be at the same school. I have a little bit of concern for my oldest, the struggles he may have with classmates and how they see Simon. I’m already preparing my heart and praying for the teacher in those situations – for her to be able to help in those situations.
What has been the greatest positive about having Simon as a part of your family?
Well, it’s been 100% positive. Not just for our immediate family, but for our extended family and friends as well. Everyone has just grown. We’re now in this place of just being more accepting and more open to anything. It’s shifted how we think, in a very good way.
Were there any unexpected positives you’ve found?
The humility he brings. Because you know, we all need a lots humility. It’s so important to be humbled. When I think about his brothers, and one day they bring home a girlfriend. Simon, he’s this filter for “really good quality human beings”. So, someone can look good on paper, but if they walk in and have the wrong attitude towards Simon – it’s really telling. I think Andrew and I will have lots of moments like that when we laugh and say “thank God for Simon!”.
Are there important people or professionals, that have impacted or supported you during this journey? Any important resources?
Absolutely, the resources! I couldn’t imagine not utilizing resources. Simon’s therapists, speech, occupational, and physical therapists, along with medical guidance from pediatricians make a really big difference.
The teachers that are part of our inclusion school system. I’m really thankful he’s accepted and loved for all his little quirks and gets to experience that. But also because it is so beneficial for the “typical” kids he interacts with. They really love him.
So, how do you answer the question “what’s it really like?” (to parent a child with down syndrome)
When people are trying to understand, I explain it in the same way I would talk with someone who has never had children. They’re also in this world of thinking “This looks like a lot of work. This does not look like much fun.”
So after you’ve had a child you can say “Yes, it is a lot of work, and sometimes it can be super stressful and worrisome. And sometimes it’s really frustrating. But the Joys.” You know that you can’t even begin to explain the joys. It’s the same way with having Simon.
The valleys can be lower, but the mountain peaks are higher. The challenges are a bit heavier sometimes and we have to put more thought into “what does he need?”. It’s this uncharted path. Whereas with raising my other sons, I was following a path that had been laid out before – paths I’d walked before, and everyone else around me has walked before. I take him to therapy, and engage closely with his learning. So, it is more work and more thought because I’m learning something new too. But then the joys! When he meets these milestones or when I see him standing on his head it’s an even deeper sense of joy.
Simon is your biological son. What would you say to anyone who is considering the choice to adopt a child with down syndrome?
It does require work. But, not in a way that is different from the work you give other children. It just has a different tone to it. I don’t think the parenting “work” would be too much for anyone.
“Our culture is just so fixated on “super early independence” and “high achievement”. ”
They’re probably thinking of “the burden”. Our culture is just so fixated on “super early independence” and “high achievement”. Those are the number one things our society focuses on when it comes to raising kids. We want these super high achievers and independent as soon as possible. So, when we think of any type of development or neurological difference, there is automatically the jump to “well how dependent will they be on me?” and “will this be burdensome”. You have to shift how you look at taking care of someone. If you want to look at it as a burden, I suppose you could. But, if you want to look at it as providing love and support for a human – which you, as a mom, know feeds you as well – then it isn’t a burden.
So, it really comes down to the perspective. And the perspective that they want to have, or want to allow. It’s the same with being a mom –period. We could look at being a mom to any child as burdensome. Sure, you could wake up each morning with those thoughts – but you’d be pretty miserable.
There is no denying that kids are a lot of work and they definitely change the way you live your life. But anyone who is a parent will say “we wouldn’t trade them for the world.”
“It’s the same when you parent a child with any type of differences. You get in there and do it because you know this child is worth it. This child is worthy. ”
It’s the same when you parent a child with any type of differences. You get in there and do it because you know this child is worth it. This child is worthy. There is this huge love that is enough to support you through. I wouldn’t trade Simon for the world.
For those who may be considering adopting a child with down syndrome, if you could give them a sneak peak at what’s coming their way, what would you share?
I mean, there is a lot there – really. Where to even start.
Being able to see their tenderness. Simon, for example, he doesn’t demand any kind of care. He’s very passive. So, every bit of care that is given to him – there is this really instinctual “love driven” response and exchange from human to human. It taps into this different level of “tender” love that you never knew you didn’t have before. I’ve even grown in how I administer love myself, in the way Simon has shown me how. My compassion for humans in general has just exploded.
“If you have room in your home for another child, you have room for this”
I’d also say that families who live in larger communities will most likely have really well organized resources like “Gigi’s Playhouse” or “The Bell Center” in Birmingham. So to families who live in those communities I’d say “If you have room in your home for another child, you have room for this” because it’s already been built, all of your pieces are already there. Those organizations have done a beautiful job paving the way for families. That might be my one regret is that we don’t live closer to a center like some of the ones they have in say Birmingham. But even without those, we’re doing great!
“It didn’t take him long to see there was something peaceful and a little extra happy with those families”
We wrapped up our conversation with Mollie telling me a beautiful story of how she can remember her mother’s attunement with the down syndrome community, even deeply considering adoption. She encouraged Mollie’s father to pay attention to families in public with a down syndrome child, for him to understand better what she had already seen. Mollie described “It didn’t take him long to see there was something peaceful and a little extra happy with those families”. Mollie’s mother passed away before the couple could further explore adoption.
“When Simon was born, that was one of the first things that came to me. It was a gift. It was like a hand-picked gift that our family is now able to experience.”
I’d like to thank Mollie for her insight, and acknowledge the admiration so many of us at Children of the World have long felt towards her.
It’s important to keep in mind, while most of us wake up needing to find joy – Simon and many like him wake up with overflowing joy and the gift of sharing.
Written by:
Children of the World, China Program Manager
More about our new series: Just As: I am / You are
Many are not aware that the vast majority of orphans waiting to be adopted (Internationally) are considered “special needs”. These children have differences ranging between disorders, delays, surgical needs, traumas, disease exposure, and many other conditions. However, if you spend any length of time around those in the adoption community, you will quickly recognize something familiar within the hearts of these children - the desire to be loved, just as they are. Differences do not diminish a child’s need for love and family.
In this spirit, we wanted to begin breaking down barriers between those who are waiting for a family - and the families who are waiting to take the first step. That is why Children of the World will be sharing stories, information, and resources over the next year that are designed to strip away the misconceptions formed about international and special needs adoptions. We hope to remove some of the fears and “what if” thoughts that prevent individuals and couples from opening their arms.
“1 John 4:8 There is no fear in love. Perfect love puts fear out of our hearts. People have fear when they are afraid of being punished. The man who is afraid does not have perfect love.”
