Motherhood Archives - Page 8 of 10

We Have A Walker

October 18, 2018 No Comments

108 Early Intervention Physical Therapy Sessions at home

62 Aquatic Therapy Sessions at the Children’s Institute

62 Land Based Therapy Sessions at the Children’s Institute

For those of you counting, that’s 232 hours spent in physical therapy leading to this moment right here:

I have been desperately searching for the right words to stress the importance of this monumental occasion. When any child walks for the first time, it is something to be celebrated. For our family, this is one of those examples of ordinary moments becoming extraordinary.

Some days, this life is challenging. There are days that I want to cancel every therapy session and go do something spontaneous. Then, we have a moment like this, and I remember why we work so hard. I have had the privilege of watching this baby progress on this journey. I saw her struggle and fight, with grit and determination, like no one I have ever seen. I am gifted with this unique experience that very few people get to witness in a lifetime. She has had to fight to roll over, to sit up independently, to cruise, to stand, to crawl, to creep. Nothing came easy to her. It has been brutal work and taken loads of time.

Did you know that the body uses approximately 200 muscles to walk? These muscles must coordinate and communicate with your brain in order to hold you upright, put one foot in front of the other, direct your motion, and get you from one place to another. This is something that parents wait for, camera in hand, to capture. Every parent can recall exactly how old their child was when they began to walk.

Now imagine that your body worked a little differently, and your muscles were so relaxed that you possessed superhuman flexibility.

Could you put your feet up over your head? No problem.

How about a split in your stroller? Piece of cake!

Could you use those 200 muscles to work together and walk?

Yes! It just might take you a little longer….27 months to be exact

But it would be that much more exciting to finally achieve your goal. It would take vast amounts of energy, time, and determination to succeed. Your mommy would be by your side the whole way and when you finally walked, she would celebrate this life changing moment. She would record it and watch it over and over.

At 2 years and 3 months old, sweet Sienna Mae became a walker. I ugly cried like I had just watched Toy Story 3. Congratulations to my precious girl.

I’d be leaving out a huge part of this puzzle if I did not mention Sienna’s therapists. I cannot say enough positive things about their dedication and commitment to my child. They have been a rock for our family. They have given us the tools that led to this moment. If I didn’t acknowledge them, I wouldn’t be sharing our true story. They are the unsung heroes. Thank you, Peggy, Amy, Lydia, and Sammy! We love you.

“Great people do things before they’re ready. They do things before they know they can do it.” -Amy Poehler

Down Syndrome, Girl Power, Motherhood, Parenting, Siblings

Different but Equal Siblings

October 9, 2018 3 Comments

“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

Down Syndrome, Girl Power, Inclusion, Motherhood

Inclusion Matters for Sienna

October 5, 2018 2 Comments

Sienna is 2 years old and the differences between her and her typically developing peers are not obvious. She may not be walking, but from a developmental perspective, there isn’t much of a gap, yet. I have no doubt it will become more obvious over time, but I envision her future surrounded by friends of all abilities, much like it is now. We are blessed to have so many friends and family members that embrace Sienna for everything that makes her Sienna. I love watching her play with other children. I wish we could all be more like them. They are so accepting. If they have a question, they ask it. I love their honesty and purity.

Sienna in music class with two of her best pals, Susie and Ellen. Susie’s tshirt says My bestie is Downright awesome and Sienna’s shirt says More Alike than Different

Our goal for Sienna is to educate her in a mainstream setting with her peers. When I say peers, I mean other children. In my opinion, separate is never equal. Separate is separate. Equal is equal.

Children with Down syndrome are frequently asked to attend segregated programs for students with disabilities. More than 40 years after the federal government guaranteed the right of students with disabilities to a free and appropriate public education in the least restrictive environment, more than half of students who are classified as having an intellectual disability (typically the official special education designation for students with Down syndrome), are educated in classrooms segregated from their typically developing peers.

School officials often claim that attending a specialized school is in the student’s best interest.

Research suggests that this is not true. In fact, there is clear and consistent evidence that inclusive educational settings can offer benefits for students with and without disabilities. These inclusion-related differences can be substantial, with one study reporting that included students were approximately two and a half years ahead of their segregated peers on measures of expressive language and more than three years ahead in reading, writing, and literacy skills. In addition, included students with intellectual disabilities were nearly twice as likely as their non-included peers to enroll in some form of post-secondary education.

There is also evidence that participating in inclusive settings can yield social and emotional benefits for students with disabilities. Such social and emotional benefits can include forming and maintaining positive peer relationships, which have important implications for a child’s learning and psychological development.

Despite the clear evidence of the benefits of inclusive educational placements for students with Down syndrome, it’s possible that some parents may fear that inclusion will impede the development of their typically developing children. Again, research suggests otherwise.

In fact, in some cases inclusion may bolster the social and emotional development of typically developing students. One research study suggested that middle school students attending inclusive schools demonstrated less prejudiced, patronizing, or pitying behaviors toward students with Down syndrome. Another research study found that students who are educated in inclusive classrooms have more friendships and higher levels of peer acceptance than similar students in non-inclusive classrooms.

Sienna and another one of her accepting buddies, Ruby.

Sienna has the right to an inclusive environment. It’s what is best for her future, and moreover there are benefits to her typically developing peers. Don’t we want a world that fosters patience, love, and understanding?

My inspirational quote today comes from one of my favorites, Mr. Rogers.

“Love is at the root at everything, all learning, all relationships, love or the lack of it.” -Fred Rogers