You can’t help but want to know more when you talk with Lindsey Strickland, founder of “Worth the Conversation” and mom to four kids, including one adopted son with Down syndrome – so that’s what we did, sat down to learn more about Lindsey’s family and her work.
How did you and your husband decide to adopt your son, Ben?
Daniel and I had always talked about adopting. My parents were foster parents when I was in high school, so adoption had always been close to my heart. We had three biological children and discovered our youngest had some neurological diagnoses. From there – being in the world of therapy and medical appointments – we started to discuss adopting a child with special needs. As we researched adoption, we knew we wanted to adopt a child who wouldn’t otherwise have a chance at a permanent family and we found China had many waiting children with lots of medical needs.
It was really scary! Just like having a biological child, you don’t really know what you’re getting into! We had a small medical file and a few videos in which we could see Ben was spunky and had a strong personality that would fit with our family. Although we didn’t have much experience with Down syndrome, we were smitten by this chubby toddler on the other side of the world. But still, we were terrified to enter the unknown!
(for more of the Strickland Family’s adoption story, read the NBC news article here https://www.nbcnews.com/news/asian-america/abandoned-asia-orphans-find-hope-new-day-n523181)
Fast-forward four years and how has your family’s story played out?
Given that Ben was three years old and had lived in an institution, there was a lot of trauma to overcome. He needed to learn how to be in a family and have a mom and dad who were his primary caregivers – to learn to trust and depend on us. He’s very independent and was not interested in relying on anyone! There were a lot of new medical diagnoses – we did all the routine tests for kids with Down syndrome – cardiology, hearing tests, etc. and discovered some pretty serious things in the process. He needed total airway reconstruction and would not have made it had he stayed in an orphanage. We didn’t know that going into it, but he wouldn’t have.
Honestly though, all the attachment and bonding needs – weeding through the trauma of not being in a family for so long – was probably harder than the medical stuff. My other three kids have never once doubted bringing him into our family. They’re obsessed with him! Have you heard of ‘The Lucky Few?’ My kids call everyone who doesn’t have a child with Down syndrome ‘the unlucky few!’ Unknowingly, this child opened up this entire amazing community to us.
When did you seek out the community of families with Down syndrome?
Initially, it was other adoptive families that we really felt connected to. But once the initial struggles lessened, that’s when we really sought out the Down syndrome community. We were trying to sort out – What is trauma? What is Down syndrome? And what is just his personality? He’s so resilient! There’s a unique resilience in kids with Down syndrome that makes them survivors and he’s made us all stronger.
What are Ben’s other great qualities?
Ben’s not very verbal but he can make friends easily. He’s the first kid with Down syndrome at his school and everyone loves him. We are so thankful for that. It’s so interesting how people with Down syndrome instantly win us all over. Ben is very compassionate and is the first one to notice when somebody is hurt and run to them. But he also likes routine and keeps everybody following the rules! And Ben loves babies. He was around so many babies in his first years and knew how to take care of them – I think a lot of his compassion came from that experience.
Shifting gears just a bit, will you tell us how “Worth the Conversation” got started?
Because of my background in child advocacy and sexual assault intervention, I was vigilant with my older kids in educating them about body safety. After adopting Ben, I learned children with developmental disablities are at three times greater risk of sexual abuse. I knew educating Ben would look different than I’d been used to and I wanted to figure out a way to educate him that was developmentally appropriate. While sitting around a campfire at a retreat with 25 other moms of children with Down syndrome, I asked if they knew of any sexual abuse prevention resources for children with developmental disabilities. Everyone agreed that it was something they worried about but didn’t know how to address. There were great resources out there for puberty and healthy adult relationships, but nothing for young children. After months of research, I realized the education needed to be aimed at the parents. Our kids need so much repetition and consistency that it is vital to equip parents early on how to set healthy boundaries and advocate for safety.
What are your plans for “Worth the Conversation?“
I’m excited to be in the process of obtaining non-profit status and want to make the information as accessible as possible! It will be a lot of online education and social media awareness. I want to bring information about “Worth the Conversation” to the places and events where parents are already going, so I will be giving talks to Down syndrome groups and attending conferences as well.
This is a hard topic. What is the conversation like?
A lot of times kids don’t have the language to say what they need to say, even typical kids, so I recommend starting early with correct names for body parts. Even if a child isn’t verbal, it’s still important they learn about their bodies! Being comfortable with talking about bodies, especially private areas, lets kids know they’re not going to be in trouble if they need to come to you with a question or a problem. Another important thing is to teach the difference between surprises and secrets. We don’t allow secrets in our family – there is never a good reason to have a secret! Really, above all, the most important thing is to understand how abusers groom children in order to gain their trust. We have to be adamant about having clear boundaries and understanding that anyone can abuse. If parents are willing to learn just a little more about sexual abuse – that awareness alone will increase their child’s safety. I want “Worth the Conversation” to empower parents to talk about this with the adults and teachers in their child’s life – which will ultimately create more allies and people keeping our children safe.
How is the conversation going with Ben?
I am more intentional with my actions with him. For instance, he was just potty trained, so I’m trying to give him more privacy. Also teaching him appropriate boundaries with personal space – which takes a lot of reinforcing! I think people often see individuals with Down syndrome as public property and are affectionate as a way of showing acceptance – so I am teaching Ben he doesn’t have to hug everybody and can say no. He can give a high five instead. Our kids like routine, so I’m helping him create an age appropriate routine by having him change in his bedroom or bathroom. It can be challenging since he still relies so much on us for help, but I’ve seen him respect our privacy when we respect his, so I’m trying to remember to set an example – it’s so easy to overlook that!
Overall, what is your approach?
There are so many things we’re “supposed” to be doing as special needs parents. The list is endless! So, I want to take the approach of educating and empowering parents to adopt an overall mindset of safety rather than dictating a list of rules to follow. I believe the Down syndrome community is such an amazing group of people and we can change the statistics for our kids!
Read more about “Worth the Conversation” in a recent article. https://familyapp.com/preventing-sexual-abuse-in-children-with-special-needs/