Sharing Life with Sienna

I made this video to show to a group of students studying to become genetic counselors. Genetic counselors typically deliver a prenatal diagnosis. A dear friend and fellow rockin mom and myself presented information to them about how wonderful life is with that little something extra. I think we truly made an impact. Our hope is that they walked out of that classroom knowing they can share some wonderful stories about our kids and the resources available to families. This kind of advocacy work is the most rewarding, because you truly feel like you are making an impact. The following video has been shared over 400 times and has close to 30k views. Please continue to share. This could help a mom struggling right now.

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Roadblocks

Today, I hit a small roadblock on my journey of advocacy for Sienna. If I am honest, these moments can set me back. My roadblock came in the form of an adorable little girl who had a perfectly normal question for a kid to have. She saw me walking Sienna and stopped. She looked up at me and said, “Why do her eyes look that way?” I responded by telling her that her eyes were shaped like almonds, because she has something called Down syndrome. She stared at her some more and then walked away. Haley was with me and she looked up at me and said, “I think Sienna’s eyes are pretty.” My eyes began to water as I responded, “Me too, baby. Me too.”

It doesn’t seem like much of an altercation, but it took me back to a moment last year when a little boy approached Sienna and I and asked why she looked like an alien. This was a little boy I had to see at a weekly activity. He called Sienna an alien baby quite a few times. At the time, I wasn’t strong enough to approach his mom or even correct him. I just ignored it, which I still beat myself up over.

Moments like these knock the air out of you as a mother. You know your child is beautiful, but the world only sees something different. I will not always be able to protect my girls from insensitive comments that come from others. It terrifies me. It’s inevitable that some day Sienna will be hurt by the ignorance of someone. I just hope when that happens she has enough self worth to know that she is a beautiful perfect person.

 

The only sense of control I have over Sienna’s future is to educate others on how to accept and welcome differences. Some days, I am Wonder Woman and I am ready to go into battle. Other days, the simplest comment can make my eyes water and send me into a puddle of tears. I know there will be challenges on this journey. It’s okay to have roadblock days. Tomorrow, I will wake up ready to take on the world for my girls again. I wouldn’t change Sienna for the world, but I will change the world for her.

“You may not always have a comfortable life and you will not always be able to solve all of the world’s problems at once, but don’t ever underestimate the importance you can have because history has shown us that courage can be contagious and hope can take on a life of its own.” – Michelle Obama

 

 

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Different but Equal Siblings

“Mooooommmmmy!!!! She’s doing it again,” Haley yells while uproariously laughing. I run in the room making sure they are both okay. I turn and see Sienna throwing her toys, while screaming no and ouch. Haley is in a pile of giggles on the floor with her eyes watering. “Haley go to your room. You are not helping,” I yell angrily. She busts out of the room. I turn to Sienna while gently saying no and cleaning up. I try to redirect and not react. She doesn’t stop. I get hit in the head for the fiftieth time that week with a toy. I keep my cool and walk away. I go in Haley’s room. Immediately, I am greeted with frustration, “Mommy, you never yell at her when she does something wrong. Why do you always yell at me when I do something wrong but Sienna never gets in trouble? It’s not fair.”

Do you feel that? It’s a guilt arrow and it got me.

To most people on the outside looking in, this is a normal disagreement among siblings. But most people don’t have one typically developing child and another child with Down syndrome. I need to handle their behaviors and our communication in very different ways, utilizing separate techniques. In the eyes of my five year old, this is not fair. I know she will understand someday, but that day is not today. In her little eyes, I am being unfair. I try to explain, but it’s complicated.

Haley doesn’t know that her brain functions in a way that is different than her sister’s. She doesn’t realize that I cannot lose my temper in front of Sienna. When Sienna sees me being very animated, she gets the reaction she craves. Anger and joy both come in at the same speed and it’s a stimulation that Sienna seeks out. She is craving that reaction, and Haley is the motherland of reactions. She laughs at every bad behavior Sienna initiates. It’s a viscous cycle and one I have to put a stop to now, before it gets worse. How?

One suggestion from a respected psychologist whose book I am currently reading is bribery. He uses some fancy therapy word to describe it and then goes into an explanation about how a paycheck is something you are rewarded with for positive behavior and this is the same thing. Soon enough, I will have an m&m jar on my kitchen counter, and when Haley controls herself and doesn’t laugh after Sienna exhibits a negative behavior, Haley will get an m&m. I know it might seem extreme, but these are the strategies we need to adopt. I am also hoping this helps Haley feel like she is an important part of Sienna’s behavioral discipline. I want to let her play a role in the process. For Haley, being appointed responsibility is a reward.

I believe in arming myself with information in order to help Sienna. The book I mentioned has been very helpful in developing strategies.

Here is an excerpt from that book, Supporting Positive Behavior in Children and Teens with Down Syndrome written by David Stein, Psy.D.

“When a typically developing child learns something new – either by hearing it explained or seeing it in action – her brain processes that information and then “encodes” it by transferring it to longer-term memory. Next, her brain “consolidates” the information, or stores it permanently. The most crucial difference for children with DS is the new information is not transferred into longer-term memory and stored as easily or consistently.”

I find this both fascinating and key to teaching Sienna. I have noticed that it takes Sienna constant repetition in order for her to remember things that Haley instantly remembered. Sienna and I spend time going over first word flashcards daily. We review the big book of first words. We go over new letters on the fridge and in the tub every day. It takes many more repetitive tasks for something to sink in. When I read this excerpt, I was so relieved to understand the differences in the brains of children with DS. I also started to realize that maybe having this one up on information is a blessing. Do you know how many children have behavior issues and parents just spin their wheels trying to determine how to help them? We have an early roadmap on Sienna’s brain.

When we understand the differences in the way our kids with Down syndrome function, we can give them the tools needed to succeed. And when I dig even deeper, isn’t this true with all children? I am sure you have different parenting techniques for each child in your house no matter what their capabilities. 

“We cannot be reluctant to lead and you cannot lead from behind.” -Condoleezza Rice

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