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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Inclusion Matters for Sienna

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

 

 

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Dear New Mom in the Down Syndrome World,

Dear New Mom in the Down Syndrome World,

Congratulations! Welcome to our community. If you’re anything like I was, that comment probably just evoked an eye roll. I wasn’t much of a joiner in the beginning and you don’t have to be either. Maybe you are a joiner and want to dive in. Do what’s best for you. No matter what, we will always be here.

You can do this. Maybe, you are devastated. Maybe, you don’t know what you are feeling. Either way, process your own emotions. Allow yourself to be disappointed. Allow yourself to be joyful. I promise there will be so many joys. This baby is more alike than different. Don’t feel guilty. You didn’t expect this, and you can’t be expected to accept it overnight. It will take time, and that’s okay. I promise you, that if you put one foot in front of the other, you will get to the other side. Some people get there quickly, while others arrive later.

People are going to overwhelm you with information. Do not put too much pressure on yourself to know everything. You have time to figure it out. Contact your local Down syndrome organization and listen to them. They will provide you with the local resources you need. If you are a social media person, join a DSDN (Down Syndrome Diagnosis Network) birth group. They will connect you with other moms who recently had babies with Down syndrome. You can go there and know it’s a safe place to ask questions. There will be questions.

Doctors will not have all of the answers. I hope your child’s diagnosis was delivered in a positive manner. The perinatologist who delivered the news to me did so in a negative way. He painted a very bleak picture of life with a child with Down syndrome. He was misinformed. There are amazing doctors out there, but you will meet doctors who don’t realize our kids’ worth. It is now your job to shout their worth right alongside us.

Our doctor told us that Sienna would be delayed in talking, walking, and all of her milestones. She just turned 2 years old. She can identify and say 10-15 letters. She can count to 5. She is speaking in 2-3 word phrases. She is not walking, but she is on the go. I celebrate every movement and it has made our days full of joy, laughter, and shouting.

If you want to breastfeed, we have the resources to help. You can do it. It might not be easy, but it absolutely can be done. Here is a link to my breastfeeding journey. I can help and get you connected to other moms who can help as well.

There are lots of unknowns and the medical protocol can overwhelm a new parent. Do not look too far ahead. Celebrate each day. You will learn to slow down and it will be a welcome change in pace. The dreams you have for your family do not need to change. You will have bigger obstacles to overcome, but you will have bigger celebrations. Life’s most ordinary moments will become extraordinary.

Below is one of our favorite essays about this journey you find yourself on. We hope you enjoy it as much as we do. We have been to Italy and Holland and we adore them both for different reasons.

Written by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.

It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!” you say. “What do you mean, Holland?” I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

 

 

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