Stories

Advice and guidance from medical professionals and internet searches can only go so far, and the information and images are often scary. The best source of information, to know what it’s really like to have a child with a disability or life-long condition, is from another parent who has a similar child. We are honored and inspired by the parents who have shared their story with us. They inform and encourage others, in similar circumstances, just starting their journey.

We are actively collecting and updating new stories.

We welcome you to check back often, and to share your story. If you or someone you know has a story to share, please contact us to add your story.

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Most Recent Stories

Caitlin and Dallin: Spinal Muscular Atrophy, or SMA, Type 1

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Caitlin and Dallin’s daughter, Auni, was 4 months old when they realized she wasn’t developing typically. When Auni was 7 months old, she was diagnosed with Type 1 Spinal Muscular Atrophy, or SMA, which is a terminal diagnosis. Auni lived 22 months before she passed away. Caitlin and Dallin open up about the emotional journey they have been on, and the gift Auni was to them, and the joy she brought to their lives.

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Spinal Muscular Atrophy, or SMA, which is a terminal diagnosis. Auni lived 22 months before she passed away. Caitlin and Dallin open up about the emotional journey they have been on, and the gift Auni was to them, and the joy she brought to their lives.">

Posted May 2018 under Child Diagnosis, Child Loss, Spinal Muscular Atrophy.

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.

Georgia and Nick: Autism

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When Georgia and Nick’s son Lincoln was a year and a half, he was ahead in his speech, and in lots of different ways, he was a smart kid doing really well. The older he got, he started showing signs of Autism. He lost more and more speech and stopped interacting with his loved ones. He began showing sensory issues, like having a hard time being out in public, which are all signs of being on the spectrum.

“I didn’t really want face that he was showing signs of Autism, but I just didn’t have a choice. When he was two years old, we were at Nick’s family’s house. Lincoln’s first word was ball, and I remember saying, “Come get the ball! Come get the ball!” and he couldn’t say the word ball. That was the moment when I knew something was up and that he had lost so much speech that he couldn’t say that word anymore. That’s when I knew I had to get him checked out, and it was shortly after that when we had him diagnosed.

At first it was just getting to understand that even though I knew my kid, I felt like I didn’t know my kid. After that diagnosis, I didn’t know what to do. For me, the challenge in the beginning was knowing what to do to help him, because I had no idea. We went to early intervention, I absorbed as much material as I could; I got every book I could get, and I had wonderful neighbors who had kids on the spectrum who guided me as to some of the things that I should do. I really just consumed information. I started doing floor time therapy with him two-to-three hours every day. For a kid who doesn’t want to play and interact with you, it’s a little bit tricky. In the beginning, what was so hard was trying to figure out the right therapy. Then this miracle happened, and the state of Utah started a lottery to cover behavioral therapy for kids on the spectrum because they hadn’t covered Autism on insurance before. They decided to do this lottery, and my son was a winner; he won the lottery! We got free therapy after that, and it made a huge difference. He’s really not the same kid. He was low-functioning and had stopped talking almost entirely. He’d say mom and dad, but other than that, he stopped talking and was retreating into his own world. Now, however, most people can’t even tell he’s on the spectrum. The therapy has done so much. He has got his own little quirks, but every child does, and I love him and those quirks about him. In fact, in some ways, I feel like he’s an easier kid than my other children because he’s so predictable. He’s honest and has such a good heart; he’s an amazing kid, and I wouldn’t change him.”

 

 

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Stephanie and Andy: Anencephaly

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Newlyweds Stephanie and Andy were elated to find out that Stephanie was pregnant. During an ultrasound, their daughter Grace was diagnosed with Anencephaly- a condition that is incompatible with life. Doctors told them if Grace made it to term, she probably wouldn’t make it through her birth. They told them if she made it through the birth, she would only live a few minutes.

Although Stephanie and Andy were devastated, they made the most of her pregnancy- not knowing how long they had with their daughter. Grace made it to birth- and lived 10 hours and 32 minutes.

Stephanie and Andy have used their experience to help others, and have created the nonprofit organization Carrying To Term. Which offers support, resources, and tools to the medical community, parents, friends, and relatives.

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Carrying To Term. Which offers support, resources, and tools to the medical community, parents, friends, and relatives.">

Posted April 2018 under Anencephaly.

Cora and Trey: Rett syndrome

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When Cora and Trey’s twins were missing some developmental milestones, they asked to be referred to a genetic specialist. Through genetic testing, both girls were diagnosed with Rett syndrome– a very rare chromosomal mutation that effects motor, neurological, and behavioral issues among others. There are only 8 other sets of twins with Rett syndrome in the United States.

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Rett syndrome- a very rare chromosomal mutation that effects motor, neurological, and behavioral issues among others. There are only 8 other sets of twins with Rett syndrome in the United States.">

Posted March 2018 under Rett syndrome.

Sandra: ADNP syndrome

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After Sandra’s twins were born, they noticed one of the twins, Tony, wasn’t developing typically. Through testing, they discovered several brain abnormalities, heart abnormalities, vision, behavioral, feeding, and many more complications. Sandra’s genetic team told her it was unique to Tony- but Sandra thought differently. Tony went undiagnosed until he was six years old- but through some major research and dedication from Sandra, she found a genetic research study, and Tony was subsequently diagnosed with ADNP syndrome.

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Jessica and Johnny: Goldenhar syndrome

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While Jessica was pregnant with her son Griffin, she and her husband Johnny were informed he had a heart complication- Tetralogy of Fallot. It wasn’t until Griffin was born that they realized there were further complications. Griffin has been diagnosed with Goldenhar syndrome. He has scoliosis, facial differences, heart complications, and a limb difference. Griffin is very proud of who he is, he is extremely positive, and advocates for himself.

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