Friday, August 23, 2019

David.

I'm not really sure WHAT to title this blog.

A child?

A child I won't meet?

A child who helped me see my path as to my God given plan?

Sounds hokey.

I know.

Let me tell you, its not.

A year ago, tomorrow, as I lay in bed, I scrolled though the day's feed. Facebook can keep my attention even when it seems no attention is needed.

I stopped.

His face.

I clicked.

I read.

David Leary.

There were words, a picture and so much more but as a mom of a disabled child, I sat and looked. Who was he? I had heard of him, yet I had never met him and now, I never would.

I couldn't do justice telling you about David Leary, I don't know, but I DO know what happened fr me in the wake of his passing.

I know I clicked on that "Meal Train" and I made some meal.

I know it probably tasted like cardboard to the parents who shoveled it in trying to sustain themselves so that they could care for their child at home and I know that driving up, I had a feeling that my life wouldn't be the same.

How right I was.

I left my kids at home.

I drove up to this beautiful home, quietly rang the doorbell and waited.

I stood.

In silence.

A freezer meal.

A vase.

This vase, it sat in my room. Mary. Our Catholic Mother. As I read the obituary, I felt called to bring it.

I talked to the therapists.

No parent at home.

There was his brother. We will call him B.

He stood.

He took my hand.

We locked eyes.

I set the dish on the counter, his own aide carefully shuffled it into the freezer and I stood, in awe.

Of the parents.

Of the child.

Of the therapists.

Of what I thought I needed.

Of what I wanted.

I talked.

I giggled and then I watched as their son, B, he stood opening the car doors and honking the horn. I stood. Elated. That I could take his mind off the thing that was probably impacting him most, at that moment.

Fast forward.

Therapists.

My own home.

My daughter.

Love.

She came. She entered. She hand not loved again, until my own child.

We sat.

We played.

I saw her.

She was what I wanted to be.

For my child.

For others.

For what children needed.

A year later.

Memories.

Strength.

Courage.

Perseverance.

Friends.

Support.

Love.

From a meal.

A simple meal.

One that celebrated a life yet supported a family.

Today,

New beginnings. New hope. New future. New dreams.

A child.

He began it all.

Today, we live, not for our own child, but for him, a child whose life touched those he never knew.

Happy Heavenly Birthday to a child who finally showed me the beauty of life.


Saturday, August 3, 2019

TENNESSEE becomes the 50th State to Require Insurance Companies to Cover ABA Therapy #AUTISM

**Photo credit, TN Holler**


I was tagged in a post.

It was about autism.

Not surprised.

It stated "Tennessee becomes the 50th state to require insurance companies to cover ABA Therapy".

Then I read the following from a follower on the page "ABA is an extremely abusive practice denounced by the vast majority of autistic people. This is horrible news for all autistic children in Tennessee. What is needed is coverage for actually supportive services to allow autistic people to reach our full potential, not funding to abuse us into behaving in a way that makes others comfortable."

Of course, I had to respond.

"While I agree ABA done ineffectively is in fact abusive, it can also save lives. ABA is effective therapy, the only identified through studies proven effective. that being said, it must be done properly with the appropriate therapists. While ABA for high functioning children may not be in their best interest, it can help teach self care and protocols to keep children safe. As a mother of a child with ASD, an ABA therapist and advocate I agree it must be the right situation for the individual."

I wanted to take a few minutes to talk about ABA on my blog as I am aware it is controversial. First, what is ABA Therapy? Applied Behavior Analysis is the only scientifically proven therapy effective for autism spectrum disorder. It utilizes a protocol that I refer to as a reward system, its carefully orchestrated to meet the emotional, academic and developmental needs of the individual that the treatment is targeting. While not all children are alike, nor are ABA therapists and ABA isn't always effective for every child on the spectrum. Like any decision, parents, therapists and the entire team that supports the child should carefully identify IF this is the correct therapy for the individual.

While I have seen ABA go wrong, I have also witnessed it go right. For example, our daughter cannot recall what things are or how to ask for something. If you label or tact an item, telling her what it is she may not remember it the first time or 10th time. When you go over it a number of times, pairing it with a reward, repeating and teaching eventually she has the capability to learn what the item is and what it will always be.  For my daughter, when we began ABA there was almost a direct 1:1 response/reward rate. Now, she can go for quite some time without a reward but she knows when she is "working" that she will rewarded for correct responses.

There are a number of individuals, including those who are on the spectrum themselves that do not agree with ABA, and that is okay, it may not be the right therapy for them. That being said, ABA can and will be effective for some population of individuals with autism spectrum disorder. Even with opposition, we as individuals in this great nation, deserve to have options available to us for medical treatment of our children. For a number of years, autism was not covered by my family insurance. While we paid our premiums and also our co-pays, my child did not have access to treatment necessary to help me, as her mother provide her best life for her in the future. This was not just excluding ABA therapy but also, medical visits to a neurologist, speech pathology, occupational therapy, etc. It was my cause for a number of years to spend countless hours creating dialogue with human resources at my husbands company, contacting our insurance provider and continuing to share our personal experience with local congressmen, senators and government officials.

It is proven that the best way to further your child's development with the additional needs of autism, one must access early intervention, appropriate schooling and therapies that will progress them as an individual. While it is not always ABA that a child with autism needs, it is something that must be accessible for those who are in need of it.

Another great example of ABA helping my own child is the fact that she has no impulse control. She is also a runner. This means at any given time she could take off sprinting faster than most Olympic athletes throwing caution to the wind. I have watched as she has snaked her way through crowded boardwalks, I have witnessed her run into the street in front of cars and I have heard of her taking off while at school. At ALL times someone must be vigilant and watch. Its exhausting. Through the use of ABA techniques I have been able to teach her that running from me is scary, dangerous and unacceptable. It has taken years. It has proven effective. Just the other day, I had her with me at the eye doctor. Located inside a busy Walmart not far from the exit, I watched as she began to elope. Standing, I firmly told her no. I told her to sit. I told her after we were finished we would look at toys and IF she stayed we could get one. This is ABA. There was no abuse, no confinement, not any treatment like "dog training". It simply told her my expectation, allowed her to choose and while I stood not knowing if the years of work would make a difference, she looked out the door, back at me and chose to sit in her stroller until I was done. Yes, my nearly 6 year old still rides in a stroller at times. It was ABA that kept her safe, it kept me from having to throw my credit card, purse and belongings to chase her hoping that she would not make it out the door. It was successful.

So, Tennessee, I commend you. For those with strong opinions, I listen. I read. I understand. You are correct, if done inappropriately or for the wrong child ABA is not effective and can in fact be abusive, but when carefully placed in a child's life it can in fact save it, so before you bash it completely, take a minute and listen to my story for ABA has changed my daughters life.





Thursday, August 1, 2019

Special Needs ISN'T always Special Rules...

This post will probably incite some pretty strong feelings, especially from those in the special needs community, but I feel it has to be said. These are my own feelings. I think there is a fine line between identifying your child as special needs and expecting special rules. Recently I have seen a number of posts about children or adults who may need accommodations for their disabilities and while there are laws to protect those individuals, some people seem to be taking a little bit too far.



As parents of kids with extra needs it is our hope that our children be accepted, have access to their best life and are given the same opportunities as their typical counterparts. That being said, it is MY responsibility to teach my daughter to follow rules so that she and others are protected and safe. Anyone and everyone who knows me, knows that I expose my daughter to every experience I can. I work to create a "normal" childhood for her, taking her to as many family outings as I feel she can handle or benefit from but I will always try to teach her what is appropriate and what the rules are. They are in place for a reason however lately it seems many parents who walk a similar path feel differently, especially with a HOT topic. Pool use. I agree, its hot, we want to expose our children to the joys of summer and allow them to be where they may find sheer joy but a pool can also be a deadly experience if rules are not followed. Often in public pools there are specific rules to keep all patrons safe.

Our local pool, which we love is a wonderful little watering hole that allows my kids to have autonomy but still be watched over by myself and the guards on duty. Our pool consists of a toddler pool, splash pad and bigger pool that has a small water slide. The rules are simple. They are posted and stated. Yes, there are times rules can be adjusted to meet the needs of those visiting but especially in a case such as this, rules are important.

My youngest, who lives her days with autism is not able to understand the rules surrounding the slide. They are to wait at the bottom until the slide is clear, to move out from the slide as soon as you surface and swim to get out, protecting both the individual sliding as well as the one who has just slid. I don't let my daughter use the slide. It isn't that they are discriminating against her but she cannot comprehend the rules and could potentially go before it is safe and cause a scene when clearing the bottom of the slide. Its not safe. I don't expect accommodations for this and will revisit the experience next year when we join the pool.

As parents of kids with special needs, its important that we distinguish between making sure our children have opportunities and the best environment for their own personal growth AND learning that rules are often in place for a good reason. Inclusion, understanding, acceptance is necessary and I will continue to advocate for my child as well as other children who need my support but expecting special rules be made for our children in every environment isn't helpful for our children or others in that environment.


Friday, July 19, 2019

Always Acceptance. Always.

There is a lot going on in the news and honestly, as of late, politics sickens me. Period. That being said, I think politicians as well as some of us have forgotten how to treat each other. Always. Our world is diverse. Our nation a melting pot and living in it, one must learn to be tolerant if not accepting. Always.

I have said before how Seraphina looks typical. Some have even said she is the most beautiful of my children. They may just be saying that but either way, she truly is a pretty child. My own or not. Often she is dressed well (when she lets me dress her) and sometimes she has her hair up, braided, in bows and she looks just like any other five year old you meet. I have had a conversation with a number of friends about my thought that because of this, she is not given a pass. Ever.

Seraphina sometimes has headphones on, but its rare, unless she's in a space that is overwhelming or someone is vacuuming. So if you see us, my brood and I, out at a store, she's often by my side, holding my hand and toddling along much like all my other children have when they were her age.

Then sometimes, it happens. Something sets her off. Yesterday, it was the fact that at Michael's, there was a Beanie Boo that we had at home in the rack for sale. She was insistent that it was hers and she get it. Luckily I had her in a Target cart buckled or that rack would have been overturned and who knows what would have happened. When Seraphina begins to melt, trying to talk to her can set her off more. So I quietly and firmly said, "its not yours". She escalated but the other kids were in line and I wasn't going to stop them after driving from Flemington to PBurg for their own goodies...so we waited.

As we did, I watched, the cashier, rolled their eyes, huffed and groaned and glared in our direction. I stood, I took it in. All we, as humans want is to be accepted. We won't like everyone, we wont be like everyone. That being said, we as humans are called to accept others. As they are.

You see, before Seraphina, that paragraph could have been written about me. I have often shared my own personal struggle with accepting others for who they are. I was raised Catholic and although Catholic means "all encompassing", I struggled with placing my own thoughts, feelings and beliefs on others not allowing them to be who they were intended to be. Seraphina changed that for me. I have learned that we as individuals don't always choose who we are, we can't change who we were intended to be but as humans we can support each and every person we meet on their journey.

I stood, unaware as to why Henry couldn't accept that my child, struggling, couldn't be like "typical" five year olds in that moment, even though I was trying to help her understand.

So I did it. For the second time in two days, I advocated, for Seraphina, for other children with extra needs, for adults with differences, for communities that are looked down upon, for those who are in a situation where they could use support in being who they feel they are called to be in life.

I whipped out a card, that I made, it shares my blog, my Facebook Page and the fact that I am an advocate of all with autism and other disabilities. I looked Henry square in the eye, slapped down the card and simply said "Seraphina has autism. I am sorry she interrupted your day, but she doesn't understand and she's doing her best, I am sure you understand being looked down upon, right Henry?"

In the moments since I have accepted that THIS is my daughter, autism and all, I realize that my job isn't just to love her, raise her and help her to succeed its also to raise awareness, support others and remind people that kindness, acceptance and understanding will make the world a better place.

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?

Me. 

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.

David.

I'm not really sure WHAT to title this blog. A child? A child I won't meet? A child who helped me see my path as to my God giv...