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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Kindness for the Win

Reflecting on this past month, I realize how challenging it will be to put into words the impact it has had on not only me, but my kids, and our community. Watch the video below for more perspective and be sure and read the rest of our post for more about our wonderful experiences this past month.

It all began with a trip to the store on a Saturday afternoon with my 5 year old, Haley. I had a list of items we needed to purchase in order to fulfill our 21 acts of kindness for the month. For those of you that don’t know, Sienna has 3 copies of her 21st chromosome. During October, one of the ways we celebrated her uniqueness was by performing 21 acts of kindness.

As Haley and I were driving to the store, I asked her what she thought we could do that would be kind. At first, the usual stuff came up. ‘Let’s make cookies for our neighbors. Can I have some too?’ Then I chose to dig a little deeper. Sometimes, I think we shelter our kids too much. I know I am guilty of it. We want to protect them. This was one of those times that I decided Haley was mature enough to handle reality. I asked her what she thought it meant to be homeless. We discussed the homeless men in our neighborhood that hold up signs asking for help. I love the innocence of children. Everything is so simple to them. ‘Why don’t they just get houses, Mommy?’ This led to a discussion on economics, war, and poverty.

On the opposite side of the spectrum, sometimes I am too transparent with Haley. I am too transparent with everyone. Just read my blog. She could handle it though. At first, she suggested giving them money. She even asked if Dada could give them jobs, since he had helped Uncle Dave get a job. I told her it wasn’t that simple, but that she was on the right track. I asked her, “If you were homeless, what are some things you might need?” We went up and down the aisles as she picked out t-shirts, water bottles, toothpaste, socks, coloring books, and deodorant (my suggestion). We walked around the store, going through our list, talking about how what we were doing was going to make other people happy. We were in WalMart (the epicenter of LOL dolls, Haley’s favorite toy), and as we walked by the toy section, she turned to me and said, “Getting an LOL doll isn’t about being kind to other people, so let’s not get one today.” My mouth dropped and I said, “Okay.”

We went home and made our treats. We dropped them off to neighbors and friends. The next day, Haley brought them into school along with flowers for her teachers. We spent an afternoon in a shopping center handing out flowers and Starbucks gift cards. People thanked us and one lady told Haley that she had made her whole day. We got in the car and Haley said, “Mommy, you are right. Doing things for other people does make me feel good.” She meant it. This whole experience has had a positive impact on Haley. She thinks about kindness often now. She isn’t perfect. She’s a kid, but this exercise opened the door to meaningful dialogue about the joy of giving.

For another act of kindness, we spent a morning at a local school reading our favorite Down syndrome advocacy book to a first grade class. I brought Haley along for the ride. I wanted to introduce her to the ways we can advocate for her sister. This also brought up some meaningful conversation. The concept of Down syndrome is really hard to grasp at 5 years old. She just knows that her sister does things at a slower pace, but she doesn’t care, because she’s her sister. When other kids ask why Sienna isn’t walking yet, it baffles Haley. One of the kids asked that question during our visit. That same question is always asked by her friends. When we got in the car, she said, “Why do people care so much about Sienna walking?” I explained that it is something that makes her different so sometimes people notice it, but that’s okay. We like different in our house, right? “Mommy, everybody is different. Nobody is the same. So, why does it matter?” Again, my kid is buddha. You want some insight? Spend an afternoon with a kindergartener.

We really did enjoy our time at that school. The kids were all scooting on the ground with Sienna at one point. They loved playing with our little spider monkey. We made tie dye socks and talked about their differences. I walked away feeling positive about the experience, but it is sometimes hard to tell if you are reaching kids. That night, I got home and had a message from a mom of a child we had read to that morning. It reaffirmed my belief that advocating on Sienna’s behalf is rewarding and meaningful. This mom said her little girl had fallen in love with Sienna. She wanted our mailing address to send a picture her daughter had made for Sienna. She thanked me for introducing differences to her daughter and said it opened the door to a powerful conversation.

Truly, I am just giving you the Cliff Notes version of this month. People have asked me if I make any money doing this blog. I don’t, but this month I feel I was paid far and above anything money could do for my soul. The feedback I have received in letters, messages, and emails have brought tears to my eyes and fulfillment to my heart. I have heard from other parents in our community, parents and siblings of adults with Down syndrome, students in the genetics counseling session I presented to, and people in general just thanking me for educating them and opening their eyes to the beauty of our unique life. So, I might not make any money doing this, but I will take payment in kindness any day. Thank you for following us and we hope you will continue to come back for more as we progress into the holidays.

“I have found that among its other benefits, giving liberates the soul of the giver.” -Maya Angelou

Here are some highlights from our month.

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Transitions are Hard

I sit in my living room, which is now full of strangers, thinking that this has to be some nightmare that I will wake up from. I see Haley on the steps playing quietly by herself. Tears fill my eyes. Is this her life now? Will she have to sit on the sidelines while strangers come in our house and examine this baby?

I observe as they do test after test on my newborn. They move her arms and legs which instantly flop down. They make loud noises to see if she responds. They ask to watch her nurse to see if they can determine why she won’t latch. I was up all night with her trying desperately to get her to breastfeed. I am severely sleep deprived, and if I am honest, I am still in a state of shock. I cannot do this. Everyone keeps telling me that I can, but I am not sure I believe them. I feel utterly alone.

The therapists and coordinator leave after a couple hours with their recommendations for which therapies we need to begin. How can a newborn need therapy? Thank God, my cousin is here. She works in this field, and is familiar with the emotions I am experiencing. She tells me that this will become our new normal and that it won’t always feel this overwhelming. I still want to run out the door and never look back.

Fast forward to now. Those strangers I was talking about…. Well, they certainly are not strangers now. They have become a crucial part of our family. Our coordinator has been there for me since the day Sienna was born. She has provided resources, insight, and support at every turn. She has been a vital piece of our puzzle. She took the time to find the right therapists for Sienna. Not everyone was a great fit, and she assisted me patiently until I found the team that worked best for our family. And, oh what a team we have.

Imagine if someone visited your home on a weekly basis for over two years, with the intentions of helping your child. I don’t know if it is the therapists we have or the time they have spent in our home, but they are so important to our journey. They have been a support system for me. Sienna’s nutritionist was pretty much my therapist during that first year of Sienna’s life. I called and texted her so many times, and every time she responded immediately with a resource. I could not even tell you the amount of times she’s seen me cry. Then there’s our physical therapist. Every time she arrives at our home, Sienna’s face lights up with joy. This woman is one of her best friends.

Yesterday, our coordinator and physical therapist performed an evaluation on Sienna. It doesn’t seem so foreign anymore. In fact, my cousin was right….it has become our new normal. I expected this to just be another evaluation until our coordinator pulled out the Transition Handbook and started talking to me about Sienna transitioning out of Early Intervention and into the world of IEPs. An IEP is an Individualized Education Plan.

When Sienna turns 3, her EI services will be cut off. This is how it works. It is something that has terrified me for a long time. There will be a whole new set of challenges for us. I will have to fight for inclusion. I will have to fight for services. I will need to prepare a binder and insist that my child is seen as valuable. I will have to do all of this without the support team I have had in place since Sienna rocked my world.

This is me after Sienna’s evaluation yesterday.

When our coordinator mentioned it, a pang of fear hit me immediately. Again, eyes watering and tears flowing, but for completely different reasons. I cried at the idea of them being in my house examining my newborn baby and now I am crying at the idea of them leaving us. The irony is not lost on me. Until you have sat in my shoes, you have no idea how this feels.

I know I will tackle this new challenge and I will continue to advocate for my girl. I will learn all I need to in order to ensure her success, but I am still allowed to be sad and scared. Transitions aren’t just hard for kids.

“If you are successful, it is because somewhere, sometime, someone gave you a life or an idea that started you in the right direction. Remember also that you are indebted to life until you help some less fortunate person, just as you were helped.” -Melinda Gates

 

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