Tuesday, October 15, 2019

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 everyone to do their best, to be their best and to succeed. I want our teachers, therapists and support professionals to be all in. That doesn't mean they won't get sick, their loved ones won't be ill, they won't face emotional bumps in the road and miss sessions.

You see, I get the big picture.

So often I see parents stating that people are out of compliance. Perhaps that is true but for me, my child is more than a legal document.

The speech teacher was out? Okay. I get it. Perhaps she had a sick child, or spouse or worse, a loss in her life.

The OT had to change schedules, well, maybe another child needed her. More. Maybe that shows growth.

I won't lie, four years ago, I was a micromanaging minute manipulator but today, I am far from it.

I want to see growth. I do. When I don't see it or I see my child slipping, I will meet with my team but it won't be confrontational. It will be to give my child HER best opportunity to succeed.

School is important. Therapies are important. Our world is bettered by those in the community who reach our differently abled children but that being said, its okay.

I get it.

To the teacher who has to call out.
No Worries.

To the therapist who misses a session, its cool.

To the para who isn't with my child one day because they had to cover another, I understand.

As someone who now works in a school, I get it. I give all of me. From the first sips of my coffee until my head hits the pillow, I'm in. I know that the others are too. Sure, there are a few teachers that tenure protects and I'll be honest, I am the first to disagree with it...but I will tell you every person I encounter isn't at a school for tenure or to get a paycheck and certainly not to break the law of an IEP.

Those that choose school are there to love, to support, to help your child achieve their best, whatever it may be. No matter what.

So here I sit, a special needs parent, working to learn to be a better advocate, asking the hard questions, expecting the most but understand that reality is life isn't perfect. Sessions will be missed. Classes will be skipped and in the end, that twenty or thirty minutes won't matter in the realm of life.

For me, I don't fit in. Anywhere. It used to bug me, but today I feel empowered because I am the type of square that doesn't need to fit in anymore. I am the one who gets the teachers, paras and therapists. I commend you. I know what it means to give an extra hug, to think about the child at night, to hope a child feels safe, connected and loved in school and to understand that a document that is considered legally binding means nothing if you don't have the desire to serve, push and drive each child to find their own best self and succeed to their best ability.

Saturday, October 12, 2019

Autism and New Jersey, Why Are We Number One

Recently a friend, a mom friend who is dedicated to children, their well being and making sure that our society creates a more friendly space for all children posted on Facebook asking why the rates of autism in New Jersey are so high? Her post stemmed from an article she read on NJ.com about the new Autism Cares Bill signed by Trump recently. Her post got me thinking as so many friends now have the courage to ask me questions and I am willing to answer. Its an opportunity to share our story, to grow others in understanding and to help seek a better education for parents who are living in a world where inclusion is key.

Some friends ask how my child can be on a spectrum with her challenges that is the same spectrum someone who has found success in a career as a public speaker, a lawyer or even a physician? They also wonder how my child can be on a spectrum that is the same as a child who is unable to communicate with spoken language has significant physical delays? The short of it is, its a spectrum, a continuum that has individuals both children and adults with varying degrees of the intellectual disability that is known as autism.

However, it does not stop there. So much goes into the status of the number one state for autism diagnosis. First, let us consider population. A quick google search allowed me to compare our small state with the larger state of Nebraska. We have a population of nearly seven million more people and Nebraska is nearly 69,000 square miles larger than our small state. That in itself identifies one reason New Jersey may have higher occurrence of autism.

Another thought is the change in the umbrella of diagnosis that are considered "on the spectrum". Years ago, many considered Asperger Syndrome to be different than autism spectrum disorder. While some self-advocates and parents of children who were diagnosed before the new leveling of autism spectrum disorder still identify as Asperger Syndrome as a more mild form of autism. Today however, physicians will diagnose autism on a leveling system. This includes Level 1, Level 2 and Level 3. It also is sometimes referred to as mild, moderate and severe autism. It is often also spoken of interchangeably depending on who you are speaking to.

A third idea as to our higher incidence of autism is accessibility to diagnosis. While pediatricians are now conducting early evaluations of risk factors for autism, residents of New Jersey have access to a number of large medical centers in a small space that allow for an opportunity to have your child diagnosed more readily than someone who may live in a rural space that has to travel and wait for an opportunity to have their loved one evaluated.

I do believe there are also a number of strong community sources that share information in our state, these include non-profit advocacy groups as well as grass roots movements that incorporate a number of parents working to increase awareness allowing for others to speak candidly with others and ask questions if they have their own concerns about their own children.

Finally, education. Northern New Jersey and the metropolitan areas of NY and Philadelphia are considered to be some of the best places to reside if you have a child on the spectrum. Personally, I will share my own experience here in small town USA. While we say we are ten miles from anything and an hour from everything, our community is one that is working to create inclusion, a cohesive learning experience and an opportunity to educate our children in the community where we reside. It allows my daughter to attend school with her siblings, to receive therapy services supported by a strong team of therapists and teachers that want include me in my child's planning and to grow and learn with her peers affording her the ability to learn where she lives and teach others to be a little more understanding and inclusive. That being said, we must ask ourselves if people are choosing to move to New Jersey to receive the same benefits we experience in our community?

I personally believe that there is no one correct answer as to why Autism in New Jersey has the highest rates but I do believe that there are some reasons why research shows that it is. I also believe that there is so much more that we have to do. For many years I never understood my purpose in life, I truly believe that I was gifted with the life of my daughter to show me my purpose and I couldn't imagine a better path to walk, even in the dark moments. I hope that some how we will be able to identify the cause of autism and work to create a life that allows every individual, with an intellectual disability or typical ability to learn and grow an opportunity to live their best life.

Feel free to follow us on Facebook at Behind the Face of Autism, or here where I promise to share the good, the bad, the ugly and the beauty of walking this road with my daughter.

Monday, October 7, 2019

Fired Up

Have you ever spent a weekend trying to sort out all the information thrown out at you regarding something that you have become so passionate about you almost stand still, like a deer in headlights?

I'm there but internally, I am fired up beyond belief.

This year, I have the privilege to sit in a room of individuals both family advocates and self advocates and participate in a program called Partners in Policymaking. This program, offered by Rutgers through The Boggs Center on Developmental Disabilities has left me sitting fired up without a clear path on where to begin. That being said, I am certain the individuals I am sitting by will have my back focused on their own areas of change that they hope to make.

The first month, I spent moments crying, revisiting the diagnosis, the life and the struggles that we face raising a child we only want to have the same opportunities as others. This month however I sit here strategically emailing, writing and calling individuals who can help me to make a change, for my child, myself and those who come after us.

I still remember the shock I had when I learned we had no insurance benefits for our disabled child, and I struggle still to get her qualified under New Jersey Performcare, trying to prove my child is disabled enough to receive help, from the state. I think about what I didn't know, four years ago, and also about what I do now and I celebrate the gift that autism has brought into my life.

This month, I am focusing on my project for Partners. I have so much swirling in my mind I almost struggle to get it out. I see the change I hope for my child and those behind me but feel as if I am trudging uphill trying to push so much out of my way. I am learning, about myself, about others and how to be a better wife, mother, friend and human being. Gosh, what I never imagined autism would bring to me.

This weekend however I dreaded our Sunday session. Honestly, I get overwhelmed with academics, long power point presentations and deciphering laws that will potentially impact me and those that I love. However what I was met with yesterday got me more fired up than my own journey, our journey to fight for Exxon Mobil to cover autism. I want to shout it from the rooftops and say so much but also dread stepping on toes, hurting feelings or even rubbing people the wrong way.

Sometimes choosing to do what is right means taking a road that may have bumps along the way but realizing that perhaps I can make a change that will help someone else who walks a parallel path with myself.

Yesterday, I had the honor of being in the presence of an attorney from the Center for Public Representation. As she spoke, I realized that there is no party affiliation when it comes to Civil Rights. I also realized from her talk that Disability Rights are Civil Rights. Those who are disabled are treated in ways that we abolished years ago for others who were different genders and races and we are now watching as individuals are fighting for those same rights that they are not guaranteed because they were born different.

I learned that New Jersey is the second worst state in the Nation for inclusion. My child is here and while a recent post picked up by Yahoo garnered much chatter about my selfish ways, are we not humans wanting the same for our children and adults with disabilities as we are for our children and peers without? It has been years since Olmstead v. L.C. was passed and still we segregate our children and allow parents of typically abled children to dismiss our children from being included. In school. In sports. In experiences that we all dream of for our families.

I sat and watched, tearfully, with a pit in my stomach about the disgrace of our nation and what truly happened behind closed doors of institutions crushed by the PBS Documentary, "I Go Home: The Story of Pennhurst". We cannot change what we didn't know but we can in fact make institutionalization the exception, not the norm and when individuals are institutionalized allow them to make their own choices, as they too are humans. I am grateful for Judge Broadhurst taking what he saw and choosing to make sure individuals are allowed to live in the community and work towards living their best life. Still today, New Jersey is one of the most institutionalized states. Why? As one of the wealthiest should we not have the best supports and care?

Finally, I listened and learned about a rule passed in 2014 that may directly affect my own family one day. The CMS' HCBS Settings Rule currently on its way to needing full compliance to receive federal funding, allowing those living in places with government funding to have a voice, for themselves, to make choices, to plan their future, not to be treated as lesser or unwanted because they were born disabled. Still, New Jersey falls behind, in planning sitting as one of only a few states without transparency and a transition plan that is being shared widely with both family advocates and self advocates to share ways that they want this rule to impact them.

Why? Why am I fired up? New Jersey is my home and by the looks of it, we need change. Not just in schools or in communities, we need change in hearts and in minds. We need as a human race to value these individuals who share our roads, visit our churches, shop at our stores and attend school with our children to truly be seen as enough.

Years ago, my biological sister sat with me, I lamented that I was not the right person for Seraphina, to raise a child with a severe disability but she told me I was chosen for her because I was enough. Reality is, we are all enough. We all have value, worth and are deserving to live a life that we choose, that we enjoy and that we look back on with fond memories.

My call to you, my readers, my friends, my neighbors is to begin sharing, to spread the word that those who are disabled, mentally, physically or emotionally are as valuable as those who live typical lives. Together, we can choose to be fired up and often when people are fired up, there is change and I believe we can make great change.

Saturday, September 28, 2019

The Wishing Place

Friday night, the chill in the air finally felt like fall. As I walked into Streaks Stadium, nestled into the foothills of the mountains, I made my way to the stands. I stopped and chatted with a few friends and planted myself next to a couple of dear friends near the 50 yard line. A few rows below the press box, I stared off onto the field and watched the commotion of high school football. In front of those boys children danced and cheered. It was community night and although this is my community, our whole family won't be there together. Its a dream I have always had. A big family. Together. Always. Supporting each other. Celebrating successes, lifting each other up in difficult moments. A few friends asked, "is she here?" and I knew they were referring to Seraphina but like always, the answer was no. She's never there. It is too much. For her. For me. For everyone else in the stands trying to live that family dream that I once envisioned. Though my eyes faced forward, I zoned out into a space, a place only a mother with a child unable to be there can go.

The Wishing Place.

The Wishing Place comes back to me every once in a while in those moments when I think back to a time when I imagined what our family would be, what we could have been. Its a moment when I imagine what should have been, we all know the dream I had, its the one all parents imagine when they carry an infant into their homes across the threshold expecting a childhood of soccer games, Friday night lights, dance classes and tutus. In the wishing place, its different, its a place that creeps up into your mind reminding you of what you won't have, and now more than ever what it seems you need. 

I watched as young children, her peers jumped, spun and danced wearing their youth cheer gear and how I wished she too was there. I stared as high school girls scooped up kids her age and giggled, throwing their heads back into the cool air. Smiles that I wish I could see spreading across my own daughters face. Yet, it won't happen. Not this year. Not next year. Maybe never.

I tried to be there. For the other children. For children I have grown to love. To be present. For them. I had to, I laughed, listened to conversation around me and tried to keep up with the game but that uneasy laugh kept returning. You know the one I mean, the one that sounds so real you almost believe it but you know yourself you are doing it to squelch the pain, to push the feelings of sadness deep inside so that tears will not surface, so they will not fall.

Into the second quarter, my eyes began to focus more, the littles left the track and what was to come was the real reason I was there. I had to return to reality, out of the wishing place and come back so that I could be mom to one of the other four children I am blessed with. I walk a fine line between a special needs mom a mom to the other children I have. Last night, I played the roll of typical mom yet my heart wavered in between. Walking into that stadium I knew for me the night would be tough. I struggle finding balance, not feeling guilty, overwhelmingly sad or distracted by the sadness of what I don't have. Allowing myself to celebrate with my other children because they are deserving. Although I am constantly working on those feelings, nights like last night take me back to the Wishing Place. As I climbed out of the haze I remembered why I was there. Cecily. I went to watch for one of my other children. I wanted to see her, so support her and there she was. Cheering. For her, its new. I want her to flourish, to smile to be filled with joy in her life. I wished her dad could see her, with me, like so many families sitting under the lights, together. Safe as children ran around together, as a community in this small hometown. I am a mom. Not just Seraphina's mom, but mom to all my other kids. I sat and focused the camera hoping to take a few pictures for memories, to show her dad, for his own opportunity to be a part of her joy. Her hopes. Her dreams. To be honest, she looked great, the light over her face, the joy in her eyes, the smile she beamed. Though it felt bittersweet, I was glad I was present, wholly when she had her time to shine, grateful I could come back to reality from that place.

The Wishing Place, its a place a where a parent of kiddos like mine are invited. Its bittersweet, where you want what others experience yet you know you cannot. Its a place where you choose to celebrate with others but you know you this is not your story. So you arrive at the Wishing Place, you stay a while, you mourn what could have been and then, you leave knowing that one day you will return. Again. You will relive this moment through life as you continue to accept the cards you were dealt, the journey you travel, the path you walk. 

It may be easier, you will find other steps to celebrate yet there will be moments you return again and again through your life. To those who never visit, be grateful you are not invited.

Friday, September 20, 2019

In Response to Ignorance

Earlier this week The Mighty posted a piece I had written about inclusion. It stemmed from a comment made to me by a community member. I wrote about inclusion and its beauty. I'll be honest, long ago, I was an uneducated human willing to ask my child not be in the inclusion class but that was before my oldest was. It was beautiful. In fact this past year we ran into a child she tried to help and both the mother and I spent an hour catching up in a parking lot reminiscing about the beauty of the group. Academically it didn't pull her down but emotionally and socially it made her a better person. I wanted to educate, to tell others that they too could have this experience and while I cannot speak for all districts, I can speak to ours, they are doing their best to make sure children's needs are met. Always.

Tuesday, a friend shared that it had been picked up by Yahoo and I was super excited to see that it got carried over to yet another place where the voice could be shared advocating for inclusion and children learning tolerance, acceptance and understanding and perhaps educating mom and dad about what true inclusive education is today. That afternoon basking in the beauty of daylight, I read that a friend said I shouldn't read the comments. Honestly, I have been too busy...between working, coaching and my five kiddos schedules, I haven't had time but this morning, I quickly looked. I saw one comment that made me want to post my own and so I did but this evening I got to wondering, how many others really didn't understand what I was trying to say and instead found it to be a great space to slam the beauty of children and adults with differences.

So I read. 

Here are a few responses. Some are honestly too vulgar to post on my family blog but its important I share to raise awareness. Without open, frank discussions we will not teach tolerance to tomorrows adults.

Someone named "Sock" said "Puke. Don't drag down the academics and social environment with a misbehaved, mentally ill, or special needs kids. Regular kids are being robbed enough of their academics, they don't need more destractions in the classroom." (note "Sock" can't spell distractions)

Another reader named "Zoey" said "4 days ago
So, she's basically saying "My child is far more special than yours, because she's not a 'normal child' like your child, so she's gotta be in a far different class than you. Haha!". Or am I wrong here? Because I always fault the parents, when it comes to them having children with disabilities that cannot function in life properly, because of their stupid views in life for their child or children." (note "Zoey"begins a sentence with the word because)

Finally so you see that its not just a few comments but far surpassing 100, "Nosferatu" lets us know his or her opinion with clear and concise wording "3 days ago
Please keep the ‘tards away from normal kids!

I sit here wondering honestly where their parents went wrong? Perhaps they never experienced failure, struggle or defeat. I am certain my mom is reading this with tears streaming down her face (stop MOM) because I finally have a road to walk, its windy, bumpy and full of turns I never expected but its the road I am walking to make tomorrow easier for parents like myself.

So let me tell you a little about my "tard". She just completed her first 100 sight words from Kindergarten. She tested out yesterday. She's already mastered her numbers 1-40 and is far more capable than most of my other kids were at her age academically. In fact, my son, whose recently been tested for G & T couldn't write going into January of his Kindergarten year and probably had four words under his belt. Children are children. A person with a disability is a person first. My mother taught me to treat others as they wish to be treated and I pray that Zoey, Nosferatu, Sock and all their naysaying buddies are not treated the way they chose to treat my daughter behind a computer screen because no one, typical or atypical deserves that.

Thursday, September 19, 2019

My Dreams for You

Dear Seraphina,

This month I began a journey, with you in my heart and on my mind. I still remember the day I found out that you were on your way. We had Indian food. Usually, I love it but that day, it seemed off. As we drove home on that blustery winter night, I shivered knowing that I in fact was pregnant. It hadn't been long since we lost your cousin Clare to cancer and I truly believed you were a sign that she was with us, her presence, her spirit and her life carried on through you. Your name comes from her.

Let me tell you about Clare in case I ever forget. Like me, Clare was adopted, into my biological family. Watching her mother love and care for her actually healed a part of me that was forever aching for true understanding of what adoption was and what my own mission in life was. I always thought it was to advocate for adoptees, but most adoptees are so wanted and so loved, I saw in Clare that I knew my life was truly wanted. Clare shined bright. Always. She danced, in an amazing way. She had a talent, a smile, a personality that was light hearted, carefree and truly a gift to anyone she met. When cancer walked into Clare's life, her spirit didn't walk out, it strengthened. Again, Clare taught me the meaning of strength, courage and faith. As I watched her face her battle with beauty someone twice her age could only wish for, she taught me that you can find beauty in each challenge in life.

I knew the moment we knew of your coming, you were a part of Clare. I never knew that you, like Clare would teach me more as a child than any adult or life lesson ever could. When I knew something was different about you, you taught me to speak up. When I was told "no", I trusted my gut. You taught me to keep pushing for what we know is true. That you are a gift, a blessing and something so unique that each day you teach. You have purpose. You challenge others to grow through your own journey with autism.

Seraphina, we are four years into this journey and I am not afraid. Like Clare so easily did, I see beauty in each moment of your life, yes, even when you are so upset, unable to control yourself and hoping that someone can help you calm you body, you are perfect. Perfectly made. Earlier I spoke of a journey, a step I have taken with some courage and risk of failure because of you. I began to truly bare witness to my new purpose in life. Advocacy. As I sat at New Jersey Partners in Policymaking, we listened, we learned and then we created.

When I see you, I see a beautiful child. One who finally turned "6" with hopes, dreams and goals. I see your love of babies and animals. I see your nurturing, kind spirit that is so beautiful when you share it, I sit back and watch in awe. Recently I have witnessed care far beyond what others told me to "expect" out of autism. Your wishing children don't cry, you empathy. Your own need to be included. You amaze me. As I watch I continue to hope. I hope you find peace. I hope that you can control your emotions and I can teach you to control them as well to help you facilitate what you need from your own body, mind and spirit and all of those supporting you. I hope that you find friends. One friend is fine, but a true one. A peer, perhaps a child to go to ice cream with or the movies. A child to share laughter with giggling late into the night until I shout "enough". I want you to find your perfect. If its working as a cashier, receptionist, day care provider or even as an aeronautical engineer, I want you to "do you". I hope one day you have all the "puppies" and "kitties" in the world. I want you to keep singing and dancing even when the words are inappropriate or just plain not the lyrics. I want you to have faith, to know that although your road is more challenging, it has the ability to be more of an impact on the world than most. I want you to know, I am here, until my dying breath. I am your biggest fan. I will of course have to discipline you and teach you right from wrong, disabilities do not take away conscience but I want you to know, I am here. Always.

Seraphina, please know that when Clare died I lost a piece of my heart. I felt part of my own direction was gone. It was but when God chose you to be mine, he just gave me a bigger gift to have as my own. Thank you for helping me to see what I am meant to do and meant to be as a person, mother, advocate and friend. This is not a battle yet an opportunity to find the beauty in the journey of life.



Sunday, September 15, 2019

Choose To Act

Yesterday my daughter had surgery. It wasn't major but she was fully sedated. Today as I carried her out of mass kicking me and pulling my hair, the warmth I felt was true embarrassment. While her body worked through the chemicals, it reacted. There was the climbing of the fridge that sent her falling, bruising herself and my wondering why they didn't send her home with her "fall risk" tag that they carefully attached to her bed.

To be honest, I was more afraid of losing her yesterday than I have ever been in my entire life. As we waited for surgery she pulled my hair, pinched my skin, kicked my stomach and screamed. When the anesthesiologist walked in, he told me to "pick her up". He wanted to get this surgery done. That day. I stood, in shock, knowing chances were he was an amazing doctor but that he missed the wine and dine before the act that he was about to perform.

On our ride home, my daughter began to come out of her haze and enter back into the world. While the nurses and doctors insisted she'd be tired, rest and slow down she didn't get the memo so today, we were back to life as usual.

In our house, that is morning CCD, church, sports and hopes of having the house look some way inhabitable as tomorrow CMO arrives to work with us to create a family plan.

As we sat in mass, I had all the goodies. I had coloring pages, Shopkins, LOL Dolls, Hatchimals and a few books from or friend Olivia that would keep her occupied as my older kids, my husband and I celebrated mass. Yet, it didn't work.

By the time the homily ended, Seraphina was aggressive. She insisted she was done. I sat there asking, "why?". Why do I live life with aggressive autism? To learn? To teach? To grow my own self into a world that I never expected? Perhaps all of the above.

As mass went on, she was more and more agitated. She began to stress pulling my hair, pinching my face, punching me. I wanted to know why? I didn't. I knew people were working to divert their eyes, to try to pretend they didn't see her, hear her and that she didn't impact their own mass experience. It was then I scooped her up, she had two fists full of my hair, I inhaled deeply, taking in all she was, who she was and hoping that God would grant me peace. I gingerly set her down on the floor in the Narthex. I began to stroke her arms, untangle her fingers gripped in my hair. I said a quick prayer, hoping that God would give m the strength I needed to handle the looks, the stares the judgement and the strength her siblings needed to handle the embarrassment of life with a child who has special needs.

Then it happened. This woman followed me out of mass. She stood over us, she asked about Seraphina. She recognized that she had autism. She asked to help me. She asked to touch her. She held her legs quietly while we got her to come down from a melt down she could not control and as we quietly spoke I realized I was not alone.

Her actions, they didn't change her world, they did however change mine. I felt like  had support. I felt my child had love and I felt we were not alone.

So many times I stand in my shoes, alone, feeling they are too big for me to wear. When I feel like I am alone, I am weak but when I have someone by side, I am not alone. Today, I am grateful for the woman who chose to act, who taught me I wasn't alone and my daughter is loved.

To the woman, the one I don't know. thank you. I know your daughter is named Victoria. I am grateful to you. For your love, your support and your kindness to give me your time. Thank you.

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...