Immediately after Tiffany and TJ’s son Austin was born, Tiffany noticed Austin’s almond shaped eyes, and she knew this was a sign of having Down syndrome. She immediately knew he was born with Ds, but they got the official diagnosis from their doctor a week after he was born.
We sat down and talked with Tiffany and TJ about their experience being special needsparents. They told us the challenges and joys they’ve experienced, and the impact he’s made on their immediate and extended family.
Tiffany said “He was three before he really walked. Potty training a child with Down syndrome can be challenging. We potty trained him before he could walk on his own. People with Down syndrome have low muscle tone, so he used a walker. He did really well at potty training for a good year and a half, but not great. He’s currently going through a potty training regression, which is common in kids with Down syndrome.”
Tiffany: “I definitely think some of the joys are when he hits develop mental milestones, because that takes a long time. Those were precious and more important than I had remembered before with our other kids, that some things came to them quickly and they knew how to do that. We didn’t feel the triumph of it as much, but those have been some really big joys. He loves people, and he loves to entertain. He’s a big people-person; he wants to be with people and learn. He loves books; that has been a huge joy. Some basic things are appreciated more than with my other kids that came easier to them. I’ve really found a lot of joy in small things.”
Tiffany: “For our daughter Jade, it has made her a lot more open and aware of her surroundings. I can see how she interacts with other kids who have Down syndrome, or kids who have any other kind of disability. She’s very cognizant of how she can help others and how she can interact with them. For James, one of the things that was interesting to me was that soon after Austin was born, we had a friend whose son has SMART (Spinal Muscular Atrophy with Respiratory Distress). It’s a very rare disorder, and so shortly after Austin was born, James decided to do a birthday where instead of getting gifts for himself, people would donate to this organization that helped kids with SMART. For our children, it has made them more aware of the world around them and how they can help other people.
They’ve seen us enough with advocacy, working with Down syndrome awareness monthand with World Down syndrome Day. I think that recognition made them want to participate. There was a time where I thought they didn’t need to do anything, because I didn’t want to pressure them to do stuff, but they said they wanted to do something. Even today, we were sharing about something at school so that they could celebrate it with their friends. I think that’s a really good opportunity.”
Impact on their extended family–
Tiffany: “They love him; they just cherish him. TJ and I are both only children, so our kids are spoiled rotten by grandparents and great grandparents that live close by. Most of them live close; TJ’s mom lives in Houston, so she’s not too far away. There was some hesitancy at first — not in loving, they’ve always loved him so much — trying to understand what Down syndrome isand what that diagnosis means, and a lot of questions to try to understand better. They really just want to help him and love him and be with him. I don’t see a lot of difference between Austin and our other kids as to how they’ve treated him or loved him more. He’s the youngest, too, so he’s the cuddliest of the three.”
TJ: “It has been interesting to watch, because there’s a generational viewing of Down syndrome, or really any intellectual disability. We were never really bummed about it; it was something that we were thought, “Okay, here we go and this is fine.” For them, watching how their preconceived imaginings of what it might be like to have a child with Down syndrome change because of how we’ve treated Austin, and how Austin has grown up with our other two children has been really interesting to watch.”
Next, we asked them what advice they would give to parents that have just received a new diagnosis for their child-
Tiffany: “They’ll bring so much joy to your life that it’s not something to worry about or have a lot of concern about. Austin hasn’t had medical issues that have caused him to be in the hospital a lot, and there are some who have to deal with that. My personal experience has been that I have no regrets, not that I had a choice to change my mind, but I feel like I’ve been blessed to know him and to be his mom. It’s not something I would worry too much about, because I try to treat him as closely as I can to my older kids. I know he may not meet the milestonesat the age my other kids did, but wherever he is, we work on the next step, whether it’s learning to get dressed himself or potty training. He has always been a good eater, so that hasn’t been a big issue, but there’s a variety of issues, and you don’t know anything really. You can’t plan out your life perfectly; there is no way to do that. Accepting a diagnosisand learning and growing from that has helped us to embrace who he is as a person and not just think about his diagnosis that often. Most of the time, he’s just part of our family. I would tell another parent that same thing. I wouldn’t worry, I would just let life come and do what you need to at different times, but don’t worry a lot. It’s never as bad as you think. There’s so much joy to experience that you won’t miss out on what you think you might be missing out on.”
TJ: “I would agree with what Tiffany said. I think a lot of people find themselves with maybe this vision in their head of what this perfect family is going to be like, and a lot of people don’t envision having those challenges that come with having a child with a disabilityor Down syndrome or whatever it might be. I think that just accept and understand that it’s okay and that it’s different than how you thought it was going to be. In a lot of ways, it’s better, because you get to meet a whole group of people that you wouldn’t have gotten to meet otherwise. You get to learn a whole new set of skills and come in contact with people who really change your life, so don’t sweat it; it will be okay.”
Tiffany: “We started attending (their local Down syndrome association group) after Austin was born. I went to the first meeting. I’m a social worker, so I like group things and support. I thought, okay, he has Down syndrome; let’s go meet some people who have children with Down syndrome and learn from them. I started attending, and I worked for the group for a little bit part-time; now I’m just a volunteer again, and that’s a good place to be, too. It’s amazing the connections that you make meeting people through that group, finding good friends who understand things differently than most. I still have lots of friends who don’t have a child with a disability, but with the friends that I’ve met through the group, I can call them about something, and they will understand something that somebody else wouldn’t. Facebook messages or finding ways to connect with them has been really helpful along the way. I’m a big advocate of life-long learning, no matter who you are if that’s helpful, so I just felt like when Austin was born, that this is something else we need to learn about. We can do it if we reach out. We’ve gone to national conventions and learned a lot from experts and other parents. It has an been amazing world to step into and to learn from so many people.”
Tiffany and TJ are now heavily involved with the local Down syndrome associationin their community, East Texas Down Syndrome Group, where Tiffany has served as the Executive Director, and they have put together many Walks/runs to raise awareness.
Austin is proof that there is nothing down about it.