Sunday, June 30, 2019

Hope. Empathy. Forty.

Forty years ago today, almost to this exact hour, I burst onto the scene. I disrupted lives and changed them forever. For forty years, I struggled with what my purpose was, who I was to become and why I was brought here in this world. Yet, I arrived. I wasn't planned or wanted but within time, my purpose would be driven by the unexpected and at 40, although I never expected it, I feel more alive, happier and full of hope than I did even a month ago. What was the change?


I decided it was time to stop hating, stop waiting, stop wishing and start living. I decided it was time to accept, learn to be open, be aware of change and opportunities to grow. Today as I drove home with my husband from the most amazing day away, I realized it wasn't that life changed it was I changed.

I am not promised tomorrow. I only have the day, the moment I am in, the space I have now.

I can choose to lament. 

I can choose to be filled with the "what ifs", "how comes" and "whys" or I can choose to take those moments of self talk and say I choose, I will and I desire. We are the driver on our destiny. 

Certainly there are moments in my life when I will struggle, when I will be hurt, when I will succumb to the fear and anxiety that weighs me down but with each positive moment I will be the driving force of who I want to be, where I want to go and how I want to get there.

So often I watch as 40 is met with disdain, stress and frustration but for the first time in my entire life, I like me.

I like that I am open to loving all people, no matter who they are, if we agree, disagree or find ourselves somewhere in between. I like that I am choosing to say "no" when it means putting myself or my family first. I realize that my priorities are always to help others out others but I must do so with a kind and conscious heart. 

This weekend, the feelings that I began to cultivate during the month concluded with an experience that was so unique, so special and so empowering, I feel that I was driven to be at that moment in The Underground Experience at Blue Ridge Winery. As Randy spoke, I was reminded of what I wanted and where I wanted to be. I was reminded my wishes and wants were not only my own but better when driven for helping others for living to give of myself but only when I make myself a priority.

As I enter 40, I could lament the mistakes. I could recount what was and where I expected to be or I could celebrate today. I could choose to be overwhelmed with the moment, the opportunity to focus on hope and the gift of the time I am in.

I choose that.

I choose for my 41st year to be focused on Hope. Empathy. Time. I also hope that I can do what Randy and Tiffany do, choosing to bring others to their better life allowing them to live in the moment, hope for the future and focus on the gifts.

Sunday, June 9, 2019

I Thought She Couldn't, She Did

After I witnessed Field Day Friday, I began to question myself once again about today's Special Olympics Young Athletes program in Ewing, New Jersey. After all thousands of volunteers have worked tirelessly for the entire year to put together the Summer Games and I was certain that my child would or could ruin them in an instant.

I jumped onto Facebook and quickly posted to a private group for the Young Athletes. Within seconds, there were responses and minutes, a phone call. I didn't need to reinvent the wheel just listen to another parent who had been there, done that and learn from their lessons. It seemed like a lot and though I felt a little overwhelmed, I figured we'd give it the old college try.

At first glance, when her eyes popped open this morning I wondered if we should go but as we snuggled and I suggested that there would be running and riding of bikes, she was all in. Not knowing what to expect we hurried our kids into the car, early and began the trek South to the beautiful campus of TCNJ.

What met us there was far beyond what I could have ever imagined. From the flawless directions to the many volunteers, the day went along seamlessly. We chose to have a volunteer accompany our family and poor sweet Sophia probably had no idea what she was getting into. Still, she persisted and we even got another volunteer when her family left making it Team Serrie, 9.

Upon arrival, we were greeted by staff who understood it all and I had a personal hug from Andrea Moore, the woman behind the Young Athletes. We have never found a program here in Warren County so meeting her made the experience even better. As she explained the entire experience, Seraphina gorged on the numerous snacks I packed to keep her happy and satiated.

Once the gates were open and volunteers briefed we began our trek inside the softball field. There was so much to see and do. It was apparent Seraphina had two favorites, the bubbles and the bikes. It was a special place as we all stood in solidarity knowing we loved someone with extra needs. We worked together to keep our children waiting when necessary and trying to their best capability. Seraphina even gave us all a good laugh when she found a handsome college student, ran up and kissed his derriere. If that isn't love, I am not sure what is.

After she had her fill playing, we headed to the Shop Rite tent, where Boy Scouts were available to assist with Wakefern and provide meals for all attendees. From the burgers to dogs, chips to ice cream it was all available for everyone. While Serrie wasn't a fan of the cooked food, I am certain she got her dairy quota for the day scoring four mini-cups of Turkey Hill Ice Cream.

The day culminated with the Young Athletes Future Stars Race and the Strider Bike Race which was so well organized there was little waiting and it was accessible to ALL athletes in attendance. As the Troopers stood in uniform adorning our little loves with medals, parents, spectators and volunteers couldn't help but smile.

I have never experienced Special Olympics. I had never even considered attending prior to our sweet angel leading us on this journey but today I knocked something off my bucket list that I never knew I needed. As I reflect on the day, the numerous individuals who worked to support our children and the opportunities moving forward, I can't help but think we were blessed to welcome Seraphina for our own because I wasn't sure what to do with my life, and now, I understand.

A huge thank you to Andrea Moore, NJ Special Olympics and all who supported us today. If you have yet to experience Special Olympics in some capacity, put it on your bucket list...for me, its going back on in another capacity. I just don't know what.

Saturday, June 8, 2019

Inclusion, I Don't Always Agree

There is a great push to incorporate inclusion for most kiddos with extra needs. As the child of an inclusion teacher, I would have to say that I was all for inclusion and didn't understand why parents would shy away from this "perfect" dance that allowed kiddos with extra needs to emulate their typical peers and help to grow kindness for children through their educational days. I watched as my mother worked to create individualized plans for each child to learn. I witnessed beauty as children fell in love with children who had numerous diagnosis and came out the other side of the school year more aware, more understanding and more empathetic. Since then, I have also seen children who are set aside, staying quiet while no true learning is being done and the child with extra needs isn't getting the support they need and perhaps the kids from that class are walking away with a negative feeling about kids with extra needs and perhaps worse, they are in fact teasing, ignoring or distancing themselves from kids who just want what they do, friends.

Fast forward, adulting, a few kids being witness to friends who have kids with disabilities and finally becoming the mother of a child with a significant disability and my tune has changed. I understand I may be in the minority in this post but while my heart yearns for my child to be included as I watch her in situations with typical peers I realize that there is a time and a place but I personally believe our society is pushing too hard. In fact for me, I don't know if I support inclusion. I believe in opportunities for typical kids to learn from children with extra needs but I don't know if the classroom or school setting is always the place to do it. Hear me out.

If we as parents taught empathy and true understanding, first by modeling it ourselves and then by being honest in our answers to questions our sweet cherubs have perhaps the desire for inclusion in the classroom may not be as intense. What most parents of typical kids don't know is that there are laws that allow for the least restrictive classroom and that causes administration to have to place kids into the class as often as the child with extra needs can tolerate. I don't pretend to speak for other parents but for me, this is how I see it.

I have a daughter. She's amazing. I want you to meet her, to watch her, to take in her beauty. I want you to know that this is a long road, a marathon, perhaps in fact a triathlon, one that I need a team behind me giving me support as I raise my child, like my typical children to be her best self. I also know she can be a challenge. I have sat with her, under a weighted blanket as her body writhes in pain, her neurons firing in a way I may never understand. I have sobbed, and wiped tears as I treated wounds that have turned into physical scars I will always wear. I have seen my own children vanish, hiding in their rooms afraid of their sibling and her meltdown and I have fallen into a heap wishing I could change the disability that has taken so much but then there is the flip side and the beauty of the disability. We have walked a new path, having to choose to bring our children to a different school and in doing so we have met our village. We have watched as each of our kids have brought their friends into our home and we have seen kids, like our own that have embraced our daughter and her differences. Certainly school has done their best, giving their entire heart to my daughter and all the children in their care but I have also wondered, does my child negatively impact others. This year she has caused two shelter in place situations. My own children were fearful, were others? I have heard that my children and others have heard her scream (its getting better) and I wonder, has she taken away from your child's education? Have your children come home negatively impacted for her presence in their typical classroom. I also know that she has found love in her class. I know that kids have embraced her and she's made typical "friends" who feel drawn to her and she allows them to grow socially and emotionally perhaps even feeling that they can help her and become more confident in the person that they are.

Two days I woke in a sweat. We were a day away from Field Day. Its a day most typical kids look forward to with anticipation. In fact, one mom I met said her kids were up by 6 a.m. ready to go and participate in a day full of fun and games. For Seraphina, I worried it would be her hell. Assaulted by loud music, busy children, water, heat and games with distinct directions and turn taking that she often gets to avoid when she's in her own little classroom, her little safe haven. I also didn't want to impact other children's fun, nor her aides, teachers and of course the staff and administration by her presence at the day. I called late in the day on Thursday and gave them permission to keep her back. I had a hunch it wasn't going to work but they wanted to try and I am grateful. I think they had to try to meet the legal bindings of her educational plan but my heart was heavy hoping that I was wrong and she could handle it. It started well. She came in beaming. The games were set, the music on and she was flanked by her team. They love her. With the first event I thought I may have been completely wrong. Then it happened. She couldn't wait anymore, the sun rose high in the sky and I lost sight of her. She was cared for. With love. With support but my heart sunk. It was too much. I put her in that situation and put those who love and care for her in that situation as well. While I wanted her to be included, to be with her peers, it wasn't the time, or the place. Luckily they were able to swoop her off and take her inside. She snuggled with those who love her. She watched chicks and she was loved by those who are her team. Still, I wondered, was I right? Perhaps we want inclusion at the cost of our own children whom we are trying to help.

Yesterday I vlogged on my Facebbook Page, Behind the Face of Autism. I tried to open a dialogue about inclusion and perhaps where we as a society can do better. In parenting, in modeling in educating so that our law makers don't feel they need to protect the children with extra needs in the end potentially creating situations our children can't handle. So this, is my thought, inclusion isn't always right. Its not always right for my child. One day it may be, and I hope she will develop so that she can spend Field Day, social outings and even academic experiences with her peer but for now I wonder how we as parents, administrations, teachers and lawmakers can work to change tomorrow to be softer, kinder, more understanding, more accepting. Perhaps inclusion ins't needed in school but first in our hearts.

Square Hole In Round Peg

I don't fit. Yup, its me. Not my beautiful child with autism spectrum disorder. Why don't I fit? Its simple. I want everyo...