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.

Why?

Insurance.

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.


Tuesday, April 9, 2019

An Open Letter to the Medical Professionals Who Get It

Dear Medical Professionals,

I remember long ago when I brought my first baby in with severe colic. I was blessed with a physician at Michigan State who got it. I had his email and phone number and while I struggled to manage graduate student life with a colicky baby, you were there. There was a nurse who brought me her own copy of T.Berry Brazelton's "How to Calm Your Fussy Baby" and yet another who told us about "The Happiest Baby on the Block".

Fast forward, I am well seasoned, kind of like a Thanksgiving Turkey and parenting a child with colic is a distant memory but today, I face new challenges I never understood, through all my years of parenting before autism.

Imagine your child being sick. Not knowing what is wrong. Noting a temperature and mood changes, perhaps other symptoms, vomiting, excessive coughing, difficulty breathing. Wait? You don't need to imagine, that is much the life of a young parent with an infant or toddler.

Now imagine that same scenario with a child, twice or three times that size, perhaps even full grown, unable to communicate exactly how they feel. Taking a temperature is a joke because you may get slapped or scratched, getting medication into a child may require a two parent suppository. This isn't what you imagined life would be and then, you see there are the medical professionals, who get it, or want to get it or are eager to learn exactly the life you live.

Today, I had that experience. First and foremost you must understand, years ago, when I knew something was different I sought medical care. The first physician dismissed me saying she was my fifth. He noted he'd been in practice longer than I was alive and told me I just didn't have time for me. What a blow. As a mother, I had spent countless hours with her tiny fingers intertwined in my hard nursing into the wee hours and to hear those words, my heart broke. I knew this child almost as much as her Creator.

Then, there was the Nurse Practitioner who listened. The one who took 30 minutes to review videos, listen to my own stories and poll my children about their experiences with their sisters and as she drew in a breath, she recognized my intuition and helped me to seek appropriate diagnostic testing. From that moment on, she has been my gold standard. In fact, not many could come near her intuition with my own child nor was I willing to see anyone else with this precious gift who now had more diagnosis next to her name than I could have imagined when I pushed her into this world. Yet, time, and trust lead way to the nurse who sat with me and shushed her as I tried to get her to use the bathroom when we suspected potential diabetes or the other Physician who told me he too understood and while his child was different from my own, to make sure I had support and that I kept pushing. He reminded me I was a good mom.

Then there was the nurse, last night, Kim, who listened to me, and took time to learn more about my "verbal" child's inability to be functionally verbal conveying exactly what was bothering her but giving me that chance to be mom and steer clear of traumatic experiences in the emergency room and then today.

I woke, my daughter, still lethargic but seeming just a little better from yesterday, was going in. She would see a physician whom I have liked but never knew personally, well. We walked in, to a nurse I know, and as she tried her best to get her temp and assess her, she knew to be mindful of my daughter's words.

Within a moment, the physician came in, seeing my daughter's fear, she allowed her to stay cradled in my arms, like the little fighter she is, she lashed about breaking an otoscope, launching additional medical tools across the room and instead of frustration, in her eyes, I saw love. I saw the reason people choose to become medical professionals. As she cleaned up and gave a chuckle, she listened to my daughter, kindly giving her sips of water and providing me with a bed pan as she was about to get sick. She knew, from my words, from my daughters fighting that I wasn't about to give up and I feared taking her in. She knew the trauma from a visit to the emergency room could potentially be detrimental to this child's well being and while treating her honored her oath of "do no harm".

She allowed us to go home, armed with a juice box, medicated with Zofran and holding an ice pop. As the sun shined into my windshield I prayed. I asked for His hand in her healing. I knew this illness was too big for me to do alone. All afternoon, I sat. I begged her for sips. I took her on a walk promising a block for a sip, and made it 3 miles. Then, a few hours later, she called. She wanted to know how she was and she insisted that I keep trying to get her to drink more.

We are now 3 full days into this virus that is ravaging my child. My mom called, feeling badly for me and honestly, part of me feels badly but I realize this is a blip, unlike that of a parent who has a child facing a real medical crisis. Still, tonight as I sit close, listening to her breathe, I cannot forget the medical professionals who choose this path, knowing it will be messy and sometimes painful, that it will cause them to pause and thank God for the healthy children they see. I am grateful today, for my daughter's medical professionals and hopeful that like the team I have found, other parents with kiddos on the spectrum can find the same love, compassion and understanding that their child deserves.

Thank you again for choosing to say yes to our children, who can be more of a challenge than your typical kid.

Sincerely,

The Messy Blessy Momma

Monday, April 8, 2019

One Thing I TRULY HATE About Autism

There are so many things that I have learned from this journey on our autism walk. There are so many blessings I try to recognize and count even when its hard to find joy in the moment. Autism is so much more than a diagnosis. Its a different way to look at things, its a mind that works in its own way on its own time. I was a parents for nearly 8 years before our youngest came along and in that time, I thought I understood. Now I can say perhaps I will never completely understand life but I am learning more living life with my youngest child. She's not only teaching me but my entire family and those whose lives she touches.

That all being said sometimes autism is hard. Sometimes its awful. Sometimes I hate certain aspects of it and this weekend reminded me of one.Sickness.

Saturday night, as my little love finished a busy day playing outside, I watched as our bathtub turned black and the joy she found digging turned my white tub into a mud puddle. While she played, I watched and she to shiver. Realizing she had been in the sun most of the day, I figured she was chilled and wanted warm pajamas to make her night better.

While she rested in my arms, I had a hunch. Perhaps she was getting sick.

"Do you feel okay?" I asked.
"Yes." She answered.

And so I finished my night and tucked her in. That night however, I couldn't sleep. I woke. I wondered. Was she sick? Did she understand what feeling okay way? I just knew. Something wasn't right. So quietly I slipped into her bed, cradled her and woke to the beautiful sunrise and felt the warmth emanating from its glory. Except, it wasn't the sun. It was her.

I knew it. I had trusted my mom instinct and realized that she doesn't yet have the ability to know when she is sick.

So, yesterday at day break began my vigilant watch to identify what she needed and what she had. A fever. That was all I could surmise but getting meds into her little body is like wrangling a full sized alligator. So I considered other options. Water. Sips. I didn't want her sick. Juice. Sugar that may cause her to want to eat. Popsicle treats that would cool her temps and give her the fluid she needed to fight. All day when I tried to move, she yelped begging me to return and so I diligently sat in bed, with her, unable to move and when I did to face her stink eye when I returned.

At my wits end, yesterday I shared on an autism page that I HATE when my child who has autism is sick. She can't identify what it is but I know she needs my help. She doesn't understand why she feels sick and moans in her sleep and while awake begging "mommy help me". I am helpless.

Today was no different, in fact even worse.  Today she began to vomit and my heart was in my throat as I realized she didn't even know to flip over and began to choke on her own vomit. Its something every new mom fears but honestly, I thought I was past that stage. I didn't even think to be worried about her choking on her own sick.

There is so much I take from Autism and use to grow myself and my family. There is so much that I cherish because its helping our family to be gentler, kinder and softer but still there are parts I just can't stand. They just aren't fair. In fact, I hate them.

Sickness is one of them.

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 ...