Down syndrome- Trisomy 21

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Tiffany and TJ: Down syndrome

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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 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 needs parents.

Here’s some of what they told us-

Tiffany: “He was three before he really walked. Potty training a child with Down syndrome can be challenging. They potty trained him before he could walk on his own. People with Down syndrome have low muscle town, so he used a walker-  he did really well at potty training for a good year and a half, but not great. That happens with all kids; they can have regressions.”

I definitely think some of the joys are when he hit develop mental milestones; because that took 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.”

When talking about the impact Austin has had on his two older siblings-

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 month and 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.”

When talking about the 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 is and 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 more cuddly 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.”

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 milestones at 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 diagnosis, and 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 disability or 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 association in 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.

 

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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.  ">

Posted May 2018 under Down syndrome- Trisomy 21.

Gina- Down syndrome and Spinal Muscular Atrophy

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Immediately after Gina’s daughter Larkin was born, Gina could tell she had Down syndrome. When Larkin was 10 weeks old, she was diagnosed with Spinal Muscular Atrophy Type 1, which is the most severe type. Gina says one of the hardest things is not being able to give her other children as much attention. Larkin is now 12 years old, and is the only known person to have lived with both Down syndrome and SMA.

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Nikki and Alan: Down syndrome

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Nikki and Alan were shocked when their newborn son Wil received a Down syndrome diagnosis. While Nikki immediately felt peace, Alan felt his entire world was crumbling. It took Alan over a month of grieving before he was able to move forward.

They now raise money for worldwide special needs adoption, and continued education for people with disabilities by selling “Wil can fly” calendars. You can find out more by visiting wilcanfly.com

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Mercedes and Andy: Down syndrome Adoption

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After a heart breaking year, Mercedes and Andy went on a mission trip to Haiti and served at an orphanage with special needs children. Shortly after, they decided to adopt a child with Down syndrome. 6 months later their beautiful daughter Sunflower was places in their arms.

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Jennifer- Sibling: Down syndrome

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Jennifer has a little sister that has Down syndrome. She also got a darling son with Down syndrome, when she married her husband. Jennifer talks about how her sister shaped her life, influencing what Jennifer studied in school and who she eventually married.

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Down syndrome. She also got a darling son with Down syndrome, when she married her husband. Jennifer talks about how her sister shaped her life, influencing what Jennifer studied in school and who she eventually married.">

Posted October 2017 under Down syndrome- Trisomy 21, Sibling Stories.

Will-Sibling: 3 Siblings with Disabilities

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Will has 3 siblings, all of whom have a disability. His sister, Heidi, has Down syndrome; and is brothers Barrett and Fritz have Autism.

Will opens up about how it’s been being their sibling.

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Karen: Down syndrome

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During her pregnancy Karen saw a high risk obstetrician- because of her age. She had routine prenatal ultrasounds and screenings and all results came back normal. Shortly after her son Caleb was born, Karen was shocked to learn he had Down syndrome.

Karen is a fantastic support and advocate for her son, and all individuals with disabilities.

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A Snapshot Story- Jessica: Down syndrome

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When the  doctor called Jessica  with test results that showed her unborn son would have Down syndrome, she immediately felt a sense of fear and anger she had never experienced before. Negative thoughts flooded her brain for days and weeks. She felt resentment and anger towards her pregnancy.

When she told her closest friends and family the news; their reactions were overwhelmingly positive and supportive. They showered her with love and told her how amazing he was going to be. And they were so right.

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Down syndrome, she immediately felt a sense of fear and anger she had never experienced before. Negative thoughts flooded her brain for days and weeks. She felt resentment and anger towards her pregnancy. When she told her closest friends and family the news; their reactions were overwhelmingly positive and supportive. They showered her with love and told her how amazing he was going to be. And they were so right.">

Posted June 2017 under Chromosome Abnormality, Congenital Heart Defect, Down syndrome- Trisomy 21, Prenatal diagnosis, Snapshot story.

Sasha and Gary: Down syndrome

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Sasha and Gary went to a prenatal doctors appointment where an ultrasound showed enlarged ventricles in their baby’s brain, as well as holes in her heart. An amniocentesis revealed their daughter, Zoey, would be born with Trisomy 21- also known a Down syndrome. Zoey is now 7 years old, and her life has inspired Sasha and Gary to adopt a little girl from China with Down syndrome.

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