Special Needs Highlight: Down Syndrome Awareness on World Down Syndrome Day!

The advocates here at Red Thread are committed to providing information about special needs adoption from China that helps prospective adoptive parents decide if adoption is right for them.  We are also committed to highlighting individual children who are waiting for their families to find them.  Special needs highlights are a way to bring together those two missions of this blog.  Because many of the children we advocate for have medical or developmental special needs, Red Thread will be providing special needs highlights from time to time to give readers a better understanding of the need from the prospective of a parent who is already parenting a child with this diagnosis.  Each special needs highlight will take the same format, answering basic questions that help readers gather information for further research.  These highlights are meant to be a jumping off point for information gathering.  

Today we’re chatting with Tina, mom of Karsynn, who has a diagnosis of Down Syndrome.  Today is the perfect day to chat with Tina because March 21st is World Down Syndrome Day.  Children with Down Syndrome have an extra (totaling three) 21st chromosome, hence the celebration taking place on 3/21.

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Thanks so much for helping us out today Tina!  And, Happy World Down Syndrome Day to you and Karsynn!

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What is your child’s special need?

Down Syndrome with a Congenital Heart Defect (CHD).  Children with Down Syndrome are more likely to be born with CHD then children without Down Syndrome.

What has been easier than you thought about parenting an adopted child with this special need?

By far, the attachment. We have adopted three times and Karsynn has been the easiest attachment wise. She loves with her whole being and finds joy in every day. Also, the lack of her ability to communicate has been easier than I imagined. She honestly didn’t even say very many words in Chinese so she basically pointed, etc. to get her word across. We quickly learned what she was needing/wanting and she very quickly learned what we were telling her and asking of her.

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What has been the biggest challenge you’ve faced, so far, parenting an adopted child with this special need?

Her stubbornness! It is hard to deal with her refusal to do some things daily. She is getting better but it’s still a challenge when an almost eight-year-old sits herself down and boldly says “nope, don’t want to”. She also likes to run off and thinks it’s funny to have you chase her. She can be very fast and has no concept of danger (cars, etc) and so keeping a close eye on her is sometimes challenging. Also, a challenge has been church.  We are very involved with our church and Sunday mornings have become a chore and sometimes a headache. We go to a fairly large church and yet they do not have a good program for children with special needs. I often feel like our daughter is a burden to the volunteers who watch her. Many families with special needs children simply do not go to church. This is not going to be an option for us. Because of this, I am currently working on changing this area in our church. These children deserve that.

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What has been harder about parenting an adopted child with this need than you thought?

The amount of appointments we have already had to deal with between the schooling system and doctors/dentists and advocating for her needs.

What does day to day management of their need look like?

Because of her stubbornness, we have to help her with things like getting dressed, bathing, brushing teeth, etc. She fights us on things that she doesn’t like doing (brushing teeth, washing hair). She constantly touches things she shouldn’t be touching and thinks it’s funny to run off with them. She has zero concept of danger so we have to always have an eye on her and I have to make sure her teacher and aides do as well. She also will not sleep in her own room (with her sister) so she has been in our room since coming home. She doesn’t sleep well and so I am woken up a few times during the night most nights. Her heart condition is something we were not prepared for because her file made no mention of it. She has a leaky mitral valve which will eventually need replaced. In the meantime, she is doing great and shows no signs of difficulty with her heart so we just continue to monitor her with echocardiograms every six months.

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When families consider this special need, what specialists should they look for be in their geographic area?

Since coming home have seen her pediatrician, cardiologist, ENT doctor, eye doctor, and dentist…all multiple times. Her dental work will all need to be done in the hospital because of her heart condition. We have also had lots of blood work done. Even with insurance we have racked up the bills for her already.  A family would want to make sure they have good specialty insurance coverage.

Have you had challenging interactions with the general public about your child’s special needs? How have you responded?

Really just stares because she has her own language and so people wonder what is “wrong” with her. We have not had anyone say anything to us directly yet, thankfully.

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We always save the very best question for last.  What is the very BEST thing about parenting a child with Down Syndrome?

I’m not entirely sure of the reason God asked us to adopt a child with Down syndrome, but the special need didn’t worry me one bit. Only God can do that. I wouldn’t of even had considered Down syndrome 8 years ago, or even 3 years ago. I wish I would have, because she is teaching us so very much about joy, love, and living in each and every moment! All those who spend any amount of time around her will agree. Although she is not happy ALL the time, she is happy most of the time. She will sing or dance at the drop of a hat. She is not afraid to try anything and everything and gives the best hugs and kisses. I pray that people can set aside their fears of Down Syndrome because what you receive is far greater than what you may think you’ll lose!