Friday, July 5, 2019

What About When You Are Grown?

Right now, you are cute. People laugh at your antics when you drop your drawers and pee at the pool. When I explain you have special needs and people smile and nod with understanding or at least empathy but as you grow, I see eyes beginning to shift. They are darting away wondering exactly what you are thinking or why you are behaving the way you are?

I want you to know I am doing all I can to help you. I want to teach you, so I bring you where we go, even if it means your siblings have to leave early or that we can't show up to the planned events of the day because you are part of our family, of our life, you are ours. We adore you. Completely, even with the disability that has changed our world in ways we never anticipated.

I am FINALLY at a good spot. You see, its taken me time to get here. Like today, when I heard you open the fridge and no matter how quickly I ran, coffee sloshing about in my cup, you had already haphazardly taken the pie out of the fridge and managed to create an upside down pie like no other. In months past I would have cried. Instead, I snapped a photo, sighed and began the clean up and though you apologized, I am not sure you actually understood.

Or there was yesterday, when you leafed through a Playmobil Pamphlet and insisted you needed the "lego house". You got dressed, got Daddy to do the same and insisted you go out to the "shop" to buy it. Yesterday. We all listened as the following hours you continued to beg for this toy at times screaming, crying and having a fit. Though we told you it was the perfect gift for your birthday, you couldn't comprehend what we were telling you.

Then there was the quick errand dad had you go on. He handed you four pennies, as I rolled change last night and asked you to bring it to me. Uneasy, I listened as you climbed the stairs. I feared you would eat the pennies and our 4th of July would be spent in the ER pumping your stomach but as your dad says, we have to try. When you didn't arrive in what I felt was a reasonable time, I called to you. No answer. Daddy followed you and you smiled as you told us that you put the pennies in the sink and broke the vending machine. Daddy grabbed tools, and I watched you as he took apart the sink to retrieve the money. You didn't understand. You kept apologizing for breaking the vending machine and began to script True and the Rainbow Kingdom. As you apologized you continued to lament the fact that you "keep messing up". My heart began to break as I knew that you didn't really understand what we were expecting of you.

As I continued to roll coins, I turned inward, worrying about what will happen when you are grown. You see, today, I got a glimpse of what may come if I cannot spread awareness about neurodiversity and for us, personally, autism.

Today we visited the town pool. Usually we know a number of people but the holiday had families in town hitting their typical jaunts, the parade, the fireworks and upon entering the pool it was immediately obvious there were at least two older individuals with autism, one was immediately drawn to our family. As she tried to communicate with us, our family welcomed her. I headed towards mom sharing that yes, we too live with autism and I got it. As her daughter, nearly my age began to hug you, she pushed your head under water and her mom nearly had a heart attack about to jump in the pool completely clothed. As I hoisted you out of the water, she apologized. I got it, but others didn't.

While you drew me away, I watched as this same person went to others and began to try and engage. The answer was simple. No. No one wanted to accept her and welcome her. Certainly, it can be an experience that calls us to be drawn out of our comfort zone to accept someone so different but it can make her day and allow her to live her best life, even if its just a few minutes of our time.

I couldn't shake the way I felt as I watched people trying to get away and I began to lament your future if I cannot make a difference, for you, for her, for others. You see, autism can be seen as "cute" when you are little but as you grow autism won't go away. Those tantrums that I can currently hold you through may destroy me. The meltdowns will become more obvious and your inability to cope with stimuli will be what holds us back, though we will always try. Perhaps, you may be able to deal with challenges more easily but perhaps you won't. Perhaps, like this woman people will scatter, they will be drawn away, afraid of what they don't know but if they don't take the time, they won't learn the obstacles you have overcome to live life in a world that isn't readily created for you.

So today, I am sad, I am worried. I am fearful. I am worried about what will happen when you are grown, but as I promise today, I will begin to look at ways I can continue to spread awareness, to help you and to help others like you. You see, sweet little one, I can't tell you what will happen when you are grown but I can tell you that you that I am here. I am going to work to make others see you, see your strengths, see how you get past obstacles, see how you have grown our family, in ways we could have never expected. You see sweet girl, while I am fearful about the future, I believe that you are the reason I am here. You are the purpose God planned for me, and for that, I am grateful. Until my last breath, I am yours.

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.

Thursday, May 30, 2019

Autism Changes our Path and Directs how We Can Help the Future

Tuesday I received an email inviting me to my oldest child's school. So often I forget to embrace the "typical" moments with my kids but since autism, I don't let one moment go by. Perhaps that is a gift from autism. I arrived at school not sure what to expect, as my daughter had only casually mentioned she was entering a contest. A contest. Knowing our family and our luck I wasn't so sure how the contest would go but I didn't have to work so no matter what the results, I'd be there.

The National Kitchen and Bath Association awarded our school a grant to help facilitate a contest that would grow their students through STEM work in their interdisciplinary studies as well as gifted and talented programs. This isn't my thing. I'm not STEM or STEAM and I certainly wasn't gifted or talented so I always enter these experiences not sure what exactly will follow. I was utterly shocked with the innovation that the children explored through their classes and it made someone like me excited to see science in motion and the opportunities of the future. 

I giggled with a favorite teacher of Simone's who suggested I visit her project. She and I have become close, first through my daughter, then through her daughter who visited me weekly while I watched her each week. There, in the center of the room, she stood. Her poster wasn't exceptional and as I squinted I could see very little of what she had to share but as I walked closer, she began to explain.

My daughter created a refrigerator that would have facial recognition to not only benefit those of us who have a few pounds to lose protecting us from ourselves but also providing protection for someone like her little sister who has been known to gorge herself on foods that were not safe for her. She does this at all hours of the day and night and after a few years all of us are exhausted, pulling her out of cabinets, down from shelves and out of the chill of the fridge and freezer. For us, her allergy is physical. She gets sick. She then becomes what we have graciously noted to be "babyzilla" BUT for other their reaction is not so mild. For other children, their parents lament the loss of their own offspring because they could not protect them from themselves. 

Perhaps our world is not yet ready for her design, perhaps some adult twice or three times her age is already working on this design but today, I learned that once again, autism is calling my family to grow, to reach, to climb those mountains that seemed to shadow our world and create darkness in the early years of my youngest child's life.

Today, I watched as my daughter beamed, with pride as she was selected as a winner of this contest that I had no idea about. Today, I learned my daughter worked for two months on this project, working on programming, researching technology and discovering a price point that she felt her product could be sold at to make it affordable (ish) for families. Today, I saw how autism, though its taken us into uncharted territory has the potential to push us to find who we were intended to be.

A huge shout out and thank you to the National Kitchen and Bath Association for giving my child an opportunity to shine. Each child, no matter what their gift has a talent and today I realized that my daughter's talent may be empathy and understanding that we are not only called to live our life but to make lives of others better. I am grateful that I had the opportunity to watch my daughter to celebrate her success and to imagine who she may become, all because autism changed our path.

Saturday, May 11, 2019

She's More Than Money to Me

This week has shown me a lot about people, about beliefs and about the reason people choose the path of what they hope to do with their lives, it also shows me how our system is broken, how money drives too many and how as a parent with this challenge standing, staring me straight in the face I realize how important it is to keep fighting even when I couldn't sleep because I was sick, all night long.

On Monday, I got a call from our BCBA, It was one that I didn't understand the impact of until later this week. When our BCBA is in our home, I listen as laughter fills the house while she works with Seraphina. I smile as Serrie plays chase manding for attention and the want for attention, something we didn't know if we would ever see is precious. I knew it was only time and I was waiting to see the incredible growth and guidance that this woman was going to give to my daughter and my family. We have started to see change in just five short months and I was certain in two or three years, that my child may in fact be a completely different child than the child she is today. Then, that call. The one that said this June she would be leaving, taking a promotion to move to Texas. While tears welled up and flowed from my eyes, I thought of the number of children she could help and as a clinical director what could she do for others that she has already started for us? Then it sunk in. I would need to find someone new, someone to accept our family. Someone to accept her. That wasn't going to be as easy.

I worked quickly giving call to a BCBA that had a relationship with our sweet Serrie. Dead end. Endless calls. Would someone take us? Oversee her? Choose to help her?

So far, the answer no.



For those who have followed this journey, insurance has been a struggle, from day one. Denials. Limitations. Lack of coverage. It was all in my repertoire. I spent hours, researching, calling, crying, and hoping something would change. I traveled all over New Jersey asking Senators, Congressmen and Representatives to listen to the fact my child and others like her were not getting the care they deserved even though they lived in New Jersey where children, like my own are supposed to be safe, protected and helped. In January that changed. Finally we had coverage. Here we are.

Recently I was denied by PerformCare once again. Instead of fighting a fifth time, I let it go because I didn't want to be greedy. I didn't want to take money from another child, services from someone else who didn't have any services available to them.

Now this.

I am back at square one. And its pretty obvious that there are two types of people. There are those that have chosen this path to help children, children with extra needs, children with autism, children that need them and there are others who have chosen this path strictly for money. Last night our last hope insisted that the least she would accept is $85.00, an hour. Our insurance pays $48.00. That last hope denied my child based on money. I wonder exactly who these people think they are choosing money over helping a child?

I am shocked.

I am saddened.

I know many teachers, they choose the profession to help children. Certainly, they need a living wage but they would never say "no" because nearly $50.00 an hour wasn't enough.

Last night, I was up. Physically ill. Vomiting out the pain that I feel fearing I cannot give my child what she needs, fearing that she won't get what she deserves because I haven't been able to provide it and I wonder, is she not more than money to others? Its apparent she was to our first BCBA, now if only I could find someone that would accept that pay once again.

Thursday, April 25, 2019

I Want To Help You Understand

Dear Sweet Child,

Today, I saw you at the park, as my daughter played in the sand you casually walked over. You needed a friend. I didn't see your parent or caregiver but you really wanted to play. You squatted down beside my daughter and the questions began.

"What is your name?"

No response.

"I said, what is your name?"

Seraphina (in a slight whisper)

I knew you didn't hear but you see sweet child, I rarely get to see her interact so I wanted to understand what the world looked like from a child's point of view.

"Hey, are you okay?"

No response.

"What is wrong with you?"

I glanced in the direction of my friend. I didn't know what to say. I wanted to tell you her name was Seraphina, she's 5, she has autism and a number of other disabilities and she may want to play, she may want to engage but she may not know how. Yet I stood. Quiet. You see sweet child, once I told a child and their mom admonished me, she asked me not to tell her child such personal things. Today, I still hurt from that conversation. Autism is a part of Seraphina. Its what makes her special. She sees things differently. Brilliantly. She's aware. Always. She's listening. Intently. More than we know. She may not always tell us what she hears or what she is thinking but its there. It comes out, in bits and pieces.

As the beauty of the sun beat down on our faces, you asked again.

"What is your name?"

I could see you were getting fed up, and then you asked something else.

"Are you a baby? Why don't you talk?"

I was hurt. Not by you. Your innocence was beautiful. Your desire to connect was incredible. I was hurt by my own reaction. I longed for her to answer, to see that piece of her I know come out from her being and be shared with you but she chose silence. I respect that. For her, its safe.

I decided this was stressing you both out and I moved her to the swing.

Later she scurried with a friend, a friend who knows her, always has, to the sand again.

There you found us. Again, no parent in sight.

You squatted next to me. You began to ask me questions.

"Do you like Spiderman?"

"Sure, he's fine."

"Do you like playing in the sand box?"

"Not really but I like to see my daughter happy."

You remembered and once again, began the dialogue with my daughter. Her silence deafening.

This happened at least once more in the hour we were there and I wondered, how I could help you understand.

Should I find your parent? Did you want to know? You seemed inquisitive and like your sweet little mind was insatiable for information and I thought you would like to know, about Seraphina, how her mind is just a little different but how she's special, just like you.

Instead, I sat, quiet. I watched her play.

My best friend came over. She made me feel safe. I needed her there. The warmth of my tears quickly faded when she sat by my side. She's walked this journey with me and few know me like she does. I felt like I didn't have to continue to guess how to handle the situation with you when she was by my side. I could be otherwise engaged and honestly, ignore you. Eventually, you ran off.

Sweet child, I want to teach you. I want to teach all the children who want to learn. Our world is special. Its special because each person is in it and this world is unique because each of us is unique.

I'm sorry if I let you down, if I kept you from learning today, because perhaps you could have been a child advocate, supporting, loving and accepting others, different from yourself but you see sweet child, I'm just not sure how to help you understand.

What About When You Are Grown?

Right now, you are cute. People laugh at your antics when you drop your drawers and pee at the pool. When I explain you have special needs a...