When Haley Met “Julia”

As some of you know, we recently went on vacation in Jamaica and spent time at Beaches Ocho Rios. Beaches is owned and operated by Sandals and they have a partnership with Sesame Street. A beautiful highlight from our vacation was the character breakfast. For all the reasons you’d expect, but also because I experienced one of those rare mom moments that instantly fill your eyes with tears and your soul with warmth.

I have always been a fan of Sesame Street. When I introduced my children to television, this is where it all began. Sienna and Haley both learned their letters and numbers at an early age, and while I did spend a great deal of time working with them on that, Sesame reinforced what I was already teaching. They also demonstrate valuable lessons about kindness, friendship, and acceptance. Plus, unlike some of the other crap cartoons out there, I actually don’t mind watching it. I also feel less guilty hoping my kids are gaining something from screen time.

Haley fell in love with Sesame all over again when her sister started to watch it. She’s in kindergarten now, so some of the life lessons apply more now versus when she was 2, and it went over her head. Sesame recently introduced the character, Julia, and she just happens to have autism. I was thrilled when they announced her as an addition to the show, and I could not wait to see how they portrayed her. Like everything Sesame does, they handled it with grace and beauty. If you know me, you know that I strongly believe that when we normalize differences from an early age, it lays the foundation for a better future for all of us. Kids learn empathy, and they also learn not to pity children of different abilities. That’s an important distinction and one that was not a part of my childhood. Haley had lots of questions during that first episode with Julia. Some were easy to address and others were tough, but Haley immediately drew the connection between Julia and Sienna. At one point she said, “So Julia works a little different, just like my sister, right?” My heart swelled with pride and I said yes, but stressed that Julia is more alike than she is different, just like Sienna. And that was that.

The day of the Thanksgiving Macy’s Day Parade, Haley immediately noticed Julia wearing headphones on the float, and asked if it had to do with her aversion to loud noises. She’s noticing things and reflecting, which will lead to compassion and understanding at a future moment in time. Sesame opened the door to meaningful dialogue. I picture families with typically developing children having these same conversations and my heart bursts, because we are evolving.

The character breakfast worked like they all do…..character plates, party bags, Cookie Monster cupcakes, photo opportunities with all the characters, a dance party, everything you’d expect, except for one part.

The host made an announcement to the children letting them know that Julia was about to join us for breakfast. He explained that Julia has autism and went on further to explain some of what that meant. He asked if all the children would clap quietly when she entered, because she didn’t like loud noises. He also said that Julia gives the best hugs. He asked if any of the kids would volunteer to receive one, but they’d have to ask for her permission first. Haley’s arm shot up in the sky and when I looked around the room I realized she was the only one.

They welcomed her up, and she knew exactly what to do. She asked Julia if it was okay and when she was given the green light, her arms wrapped around her. She came back to our table confirming that Julia did indeed give the best hugs. She asked if she could get one of the Julia dolls because she wanted to snuggle with her every night. Big mom tears filled my eyes, and I, of course, said yes. In every picture from the breakfast, Haley is proudly holding her Julia doll.

Haley and her new Julia doll

I’m not saying it’s as simple as watching an episode of Sesame Street, and boom your kid understands what it means to be autistic. I am saying that it was a starting point for us. It’s an ongoing conversation, and I always tell Haley that I don’t have all the answers, but I encourage her to keep asking them and we can learn together.

I think we, as adults, hesitate to discuss this stuff with our kids, out of fear that we will say the wrong thing. We need to dispel those fears, because our kids pick up on them. In my experience, the difficult conversations have led to some of the most satisfying moments in parenthood. Watching your child evolve into a good human being is rewarding. As a mom of a child with unique abilities, I can promise you that I won’t get offended if your kid and you stumble along the way to understanding. I’ll always do my best to help if I can.

Sometimes we choose the path of least resistance because it’s what’s easiest, but life isn’t easy. It’s complicated and so are all of the people living in it. I challenge you to start a dialogue with your kids about differences. You might be surprised by their sheer brilliance and the profound questions they ask, and you might find yourself watching your kid hugging someone like Julia, and if you’re like me your eyes might fill with huge tears of pride.

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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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Full Circle

It may look like an ordinary bench with two cute little girls sitting on it, but to me it’s so much more than that. Today, I found myself coming full circle, to a point in my life that I choose not to think about, often. Hospitals hold so much power over us. Life can begin and end in a hospital. It’s a place that forces us to look at our vulnerability. Sometimes, we have to look back on a time that we were our most vulnerable, in order to see how much we’ve grown. I had that experience today.

 

 

For those of you that don’t live in Pittsburgh, I will try and explain this as simply as possible. Basically, two health insurance providers own this city. They don’t play nice with each other. You either have UPMC insurance and use all of their providers OR you have Highmark insurance and use all of their providers. Well, after a brief respite from UPMC, we now have their insurance again. Today, I had to get an ultrasound to check on some things. I had to revisit a hospital that I have not been back to since having many of my miscarriages. 

I found myself outside with the girls, waiting. As I sat on the bench, I thought about the many times I had sat there, without them. I remember sitting there wondering if there would ever be a “them”? I was here at some of the hardest moments in my life. I also sat here at some of life’s most wonderful moments. All of Haley’s ultrasounds were done here. We had a few scares with her, but she is a fighter and she came out on her due date, with no complications. A little over a year later, I was back here again. I sat here for an hour one afternoon, with my legs carelessly drooped on top of Jason’s lap with the sun shining down on us, in that courtyard. It was a carefree time in our lives. Haley was 1 and a half, and life seemed perfect. The bottom fell out right after that moment in the sunshine. I came here and sat back down, that same afternoon, after being told that the baby had no heartbeat. I sat here trying to decide whether or not to get a D and C.

During some even tougher moments, I found myself back here wondering if Haley would ever be the big sister. I wondered if I was pushing too hard for something that was not meant to be. I remember a cell phone conversation with my best friend, while I sat on this bench. “One day, this will all make sense. You will be holding another baby, and you will know why you had to wait so long. It will all make sense.” I remember it not making sense, even after I had that beautiful baby.

I sat here during my blighted ovum pregnancy, which took weeks to diagnose and several ultrasounds. It was emotional torture. I sat here and prayed before each ultrasound. I prayed that the baby had grown. I sat here after finding out the baby had not grown. I sat here many times, before and after getting blood work. I switched insurance, some time after that and the nightmare memories have since flooded Highmark facilities as well. No place is safe.

Today, I sit here with such perspective. I have my babies. They are life’s greatest gifts, and they were worth the wait. Both of them, and every perfect cell of their bodies are gifts from heaven. They were made from us and given to us, to treasure. I am grateful for their existence, in this beautiful world. I will be brutally honest, and tell you that when Sienna was born, I thought that this perspective would never come. I will even go so far as to tell you that I thought God was cruel. I, now, realize that he was sending me on a journey. I think he could have cut a little bit of time off that journey, but we did arrive at the destination, finally. The destination is not where I had planned on taking us, but I am loving it just the same. #disabilitymomlife #holland

Women are so tough. We fight through emotional and physical pain on a daily basis, without anyone knowing. I think of some of the situations that I worked and mommed through and I know that I am a serious badass. I used to be a pretty big wimp, so I am glad the journey brought me here. That being said, I am tough enough, so I’d be happy if I never see this damn bench again in my whole life.

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