Adrianne and Jason had two biological daughters and an adopted son when they adopted and their daughter Maria from the Philippines. Maria was born missing all 4 limbs, a condition known as Tetra Amelia syndrome.
Tetra Amelia syndrome: Exceeding Expectations
Adoption
After a rough second pregnancy Adrianne and Jason decided they wanted to adopt to complete their family. They have adopted two children from the Philippines. Their daughter, Maria was born missing all four of her limbs.
Upon first seeing Maria’s picture Adrianne questioned “Well what do you think?” Jason replied “I don’t know, why don’t we?”
Preparing for Maria
They had no experience with someone with disabilities, so they had to search and find resources, ask questions, and prepare to adopt Maria. They found several individuals with the same condition as Maria.
“..it seemed like almost every person we could find who had this Tetra Amelia was for the most part a very productive member of society, living a very good life. That really brought us a lot of comfort as to what kind of life our daughter could have.”
Finding Resources
Adrianne recalls “we were able to go online and find other families with kids with similar conditions and ask them questions, and find resources in our area. I guess for us that was the hardest part, just finding all our resources.”
“This was our first child with special needs, and we didn’t really know how that all worked and what resources were out there, so it took a little bit of research on our part.”
The Cost of Adoption
For Jason, his concerns were different, “How am I going to pay for everything? Adoption in itself is expensive, and then to adopt a child with special needs started my gears turning about what this is going to cost us. I had some reservations about that, but I think there are great resources out there.”
“We Got to Watch her Grow Up”
“When we first brought her home, she was just over two years old…. She didn’t know how to play or interact, so we’ve watched her grow and find ways to interact with us.” Jason continued “We found out what she enjoys; she likes being in swings, and she likes movement.”
Adrianne has found great joy in watching Maria overcome things. “We put limits on her abilities, and she just turns around and does things we don’t think that she is capable of doing. She surprises us every day with things that she learns how to do. She is just so smart, and she is so willing to try everything.”
“It’s Going to be Okay”
In her advice to other parents Adrianne says, “There are so many resources and different groups. Through social media, there are all sorts of different limb deficiencies or different conditions, and you just take it one step at a time, because they are going to start as a baby, doing the same things that all babies do. Then as they grow, you kind of grow with them, and you know learn how to do different things in a different way”
‘For the most part, they are really smart kids, and they figure out how to do things on their own. I’ll try to show Maria how to do something, and she kind of shakes her head like she doesn’t want to do it that way and she’ll find her own way to do it.’
Kids Just Want to be Loved
Jason added, “…like any other kids, these kids just want to be loved. All kids need a family. They want to be loved, and if you love them, they are going to love you back.”
“They really don’t know any different when they are born that way; we look at it as a deficiency because we were born and raised with arms and legs, and we learned how to everything just like every other kid, but they are born that way and don’t know any different, so they grow up that way and learn how to adapt.”
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