Thursday, August 29, 2019

The First Day

This time of year is always a struggle. For parents. For people longing to be parents. For children too. So much change. So much hope. So much emotion.

Today I read an article on a favorite page of mine, Finding Cooper's Voice. It was a guest post that talked about "This Time It's Different". The blog written by a mother of 3, shares the story of her third child heading to school for the first time and it resonated so much with me.

Today, I watched as the school I intended my children to attend began. I watched as a most adoring, caring leader began her tenure as a full time Principal. I thought about my own children and how I envisioned them going through the school. I envisioned Rosary Group and I did in fact plan to one day be the President of the parent organization. No joke. I had this all mapped out.

Then it changed. Our lives. All of our lives and that plan that I had intended shifted direction. I still remember reeling from the official diagnosis. As I sat sobbing in car line, the President of the parent organization walked up to my window, I rolled it down and he asked how things were? I choked back tears and told him of Serphina's primary diagnosis. Autism. I remember my heart hurting. Physically. I remember his eyes, he looked hurt for me and then he took a deep breath and told me "If anyone can do this, you can". I carry those words. They were not "I'm sorry." or "Are You Sure?" but "If anyone can do this, you can." Still, I remember the warmth of that day. I remember the vision I had and the dream of my children being together in Catholic School forever, stolen. I realized that the dreams I planned, the path I mapped out, was not mine to choose but to follow.

Today, I watched as that school began. I watched as children I knew as babies grew up. I wished my kids had that small connected place that we knew. I will say having been pushed out, much like a mother pushes here babies out of her nest before they feel ready has taught us all to fly. Individually as well as a group. We are different than we were a few years ago. We have found a different and unique sense of self and we are all walking the path we are intended and one may even say liking it--a lot. That being said, there is part of me that wishes, wishes it were easier. I wish my daughter had her ICS Shirt and jumper. I wish there was morning gathering where a priest, layperson or deacon pumped you up while bearing witness to the beauty of our Heavenly Father and yes, I could do that at home but honestly, I don't and reality is I couldn't most days. Today, instead of one bus, we are catching five. Instead of an 8 a.m. start, its 7:30, 8:30 and 9:00. It isn't what was but is what should be on the path chosen for us.

Now, our first days, they don't consist of the pomp and circumstance they used to. I still try to make a fish dinner the night before in following my own mother and yes, we pack bags and pick clothes but until this year I couldn't even take Seraphina to the store successfully, so our first days were different.

There isn't a tradition of reading "The First Day of Kindergarten" or "First Grade" or whatever comes next, but instead the same routine we always follow. We bathe, brush teeth and of course read a story. I am not even sure she will wear the "first day outfit" we pick out or if she will return in the same clothes. Her book bag is packed and she DID in fact pick out her school supplies, but honestly, we don't know how much time she will be included in inclusion. It will be up to her.

Morning will begin early, with the high schooler and middle schooler waking little sis and my sleepily grabbing a cup of coffee while I try to keep Seraphina engaged until her bus comes over two hours later. There may be pictures, but the ones I envisioned with bright smiling eyes may happen or she may stand with her teeth clenched while she announces "CHEESE" through her pursed lips.

Our first day doesn't look like it once did and perhaps that is also a gift. On our first day, I am reminded of what it took to get us to THIS first day. It took a lot. Early Intervention. Preschool, Pre-K, Kindergarten. ABA Therapy. Occupational Therapy. Speech Therapy.  Hours upon hours of it all. It took supportive siblings willing to give up much of what they had. It took my own denial of what I wanted. It took physicians, nurse practitioners, medication and a host of teachers that walked this journey so far. It took an administrator willing to be real with me. It took me advocating for yet another year of school and reminding school of what my child needed and what I needed.

Our first day isn't where I thought it would be or whom I thought it would be with but it is the first day we are living now. So friends, as you feel the drudgery of the mundane, take a deep breath and realize there are so many of us who wish for exactly what you have.


Strider for Success

**This post is not sponsored by Strider, it is personal opinion shared because of our experience and sincere thanks to a company that isn't just looking for business but to better our world--thank you to Strider for our Sweet Super Seraphina's bike.***
Delight in the journey, follow your path, never give up.

Our bikes hung on the wall for years, collecting dust and while our other children spun around the neighborhood chasing childhood dreams, our little love tried her best to keep up. We were long past the wagon behind the bike but not able to go out as a family around the block and the once gigantic Bob Stroller now struggled to house our sweet growing girl.

That was until Strider Bikes walked into our lives. This year, we took a leap of faith and signed up for Special Olympics New Jersey. Truth be told, I had before but chickened out. When the packet came with maps of an unfamiliar campus paired with constant tantrums, I was afraid to even consider attending what is supposed to be an amazing event but this year, I chose to try again.
Seraphina takes the field long before anyone is ready for her.

Once we arrived, it didn't seem like this year would be much different but I promised myself I would keep an open mind and with four kids in tow and a family support guide, it couldn't be that bad, could it?

We started the day bright and early and as people arrived it was obvious to us that Seraphina wasn't so sure that she wanted to stay and while I watched kiddos standing, listening, understanding, I witnessed my own little one bounce from activity to activity. 
She gets by with a little help from her friends.


She didn't seem capable of what was traditionally expected but one thing I learned about SONJ was that they too, like us, expect the unexpected. It truly panned out for us here as well, when the once disinterested kiddo who learned to hate bubbles chose the bubble station as her "go to" spot. She basked in the glory of the bubble machine and it was amazing to watch her rekindle her once beloved past time of chasing bubbles and popping them. Our entire family sat back, relaxed and watched her begin to enjoy the experience of Special Olympics. The bubbles were one thing but none of us were prepared for the shock of a lifetime when we all witnessed what would come next.

Strider Bikes sponsored events at SONJ 
After a few failed attempts to follow directions and find the right fit for our girl, outside the bubbles, we witnessed magic, a magic that continues at home, today. Our sweet girl zeroed in on bikes. While at first glance I didn't see what she was after we all made a B-Line hot on her trail. She threw on her bike helmet, and was off. I broke rules, chasing her inside the roped off corral and she found the place she needed to be the entire time. Strider Bikes.
She would have stayed on the course ALL DAY

If you have yet to see a Strider Bike, its time to acquaint yourself because these bikes aren't just for kiddos with extra needs, in fact I would find these bikes to be a great alternative to traditional training wheel bikes and with the new transition pedal kit, your child can advance as they grow and learn to balance.

After a few laps around the course, we were able to corral our sweet girl and take a break for lunch before the traditional Special Olympics races, and we decided it was apparent our girl would want to do the bike race too, and so as we lined up, we hoped that she would find personal success.
Finally Willing to Park...we think.

With tears in my eyes, I realized how silly I once was to be disappointed over typical recreational game races and how I put too much into things that may never matter and realized that sometimes we typical parents don't begin to understand the value of seeing our children struggle and find success. That hot afternoon, our girl sped off as the race began and we all laughed when one of the volunteers had to chase her down the track as she eagerly raced pass the finish line. 
Family is EVERYTHING

Special Olympics turned out to be a great day, but then, we had the opportunity to talk to the Strider Family and learn about their mission to support kids like my own. I realized that sometimes we are given opportunities to grow within ourselves and that weekend, our family did, not just in experience but in number as many of the Special Olympics employees and volunteers became "friends". 

Later that week, a package arrived for our sweet hot pink loving gal, her own Strider bike with transitional pedal set so she too could follow her siblings and race around childhood. I won't lie, its been a slow go. She tires more easily and sometimes needs more help than my other children did but now, when my kids go out to ride, she can too and although our bikes are still hanging, collecting dust on the wall, I have renewed hope that one day our family can bike, together, as the family I envisioned long ago. 


There is no doubt in my mind that Strider isn't just creating bikes for business, they are creating them for success and celebration of personal success has new meaning for myself and my family and of course Super Seraphina.

Monday, August 26, 2019

To the Parents Who Don't Understand, Just Ask...

Last year about this time I posted a blog about inclusion. See, I am not a strong proponent either way as I feel everyone should be included to the best of their ability no matter what their extra needs or disabilities. Certainly, a child with disabilities should not bring trauma to your own typical child but reality is, my own children have had more struggles with typical children than they ever have with a child with extra needs and actually have learned more from them than their typical peers.

That being said, I know that when paperwork came out regarding your child's teachers, some people received notification that their typical kiddo was in an inclusion class. I also know that it upset some. How do I know? Truth be told because some people don't know WHO I am and share their feelings unaware that MY child is the inclusion child in YOUR child's class. Yup. That is her.

First, let me tell you a little about her. She's beautiful. Inside and out. She cares for babies, animals and puppies. She has an innate sense to want to support those struggling or suffering and has an empathetic heart. You've read that children with autism don't have typical social emotional feelings? Perhaps that is true for some, but like the vast array of children typically speaking, its the same for kids on the autism spectrum. She likes to eat pizza, but has to eat it gluten free and has a preferred pizza shop, just like your child. She enjoys being outside, riding her strider bike, blowing bubbles, coloring with chalk, she wants to play soccer but doesn't understand you can't pick up the ball. My daughter is my everything. Yes, all my kids are my everything but she brought purpose in my life. I have learned to stand up for her, for others, I have learned to reach out to lawmakers and sit in a meeting where you hear the worst and work with a team to plan for HER best. Just like you hope for your own child. Like you, when she was born, I imagined dance recitals, tutus, field hockey sticks and lacrosse. I imagined like her siblings she'd be bright and she'd complete our family. She does. Just differently. She wears tutus and dances to Sing at home. She can light up the room with her smile and her ability to remember far surpasses that of any person I have ever met. She's exactly as she was meant to be.

So according to the comment said "word got around" just what the class was your child was placed into. Let me tell you a little more about "that class". My other children are often in inclusion. I wouldn't change it for the world. They learn to be more patient, compassionate and you as a parent will learn too. You will learn how lucky you are to have the day to day struggles you have with typical kids. You will learn that your "bad days" and losses at football, soccer and field hockey don't mean so much. Your child will come home and cheer for the child with extra needs who finally wrote their name, answered a question or was able to play with them. In fact, you know, your child was probably chosen. When your child was placed in the class, the teachers, administration and support staff saw something. Something beautiful in your child. Most likely they saw the capability to love, you taught them that.They most likely saw the ability to go with the flow, to roll with the punches, you taught them that too and they probably saw something in you. Acceptance. Understanding. Compassion. What an honor to have that seen in who you are and the child you are raising.

I understand, we fear what we don't know. We fear what we don't understand, so I am coming to you with a plea. Please, just ask. Take a moment to learn about the beauty of having differently abled children in your class. As a parent, when we hear that word got around your child is placed in "that class" and "that class" is because of our own children, it hurts. We know you don't mean it but lets talk, let me introduce you to my daughter and I promise, I won't judge your child either.

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.


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...