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.

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...