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.

Monday, September 9, 2019

On the Eve of Your Sixth Birthday

Dear Seraphina,

It is the eve of your sixth birthday. I remember this night clearly.  Strangely, I remember it more than my other births. Perhaps its because you were the last or perhaps it was because I was finally willing to welcome my purpose in life. Advocacy.

You were born into a perfect family, as someone once said "its about time we had something go wrong". No joke. There are people like that in this world. You see however, we are proving to them that you are far from wrong.


Seraphina, you jumped into this world without waiting for doctors, nurses or the end of day. You had us off and running before you even made your appearance. Today, you still keep us on our toes however now, you have increased our endurance, grown our hearts and strengthened our mindset.

You were born with purpose.

We all are, however in six years you have shown our family and many surrounding and supporting us just how important one life can be educating, challenging, growing and of course advocating. You have taught children how to be selfless, how to live with disappointment and how to accept adversity far beyond their young lives. You have nestled your way into the hearts of strangers and found yourself a family of friends who would give all they had for you and love you, unconditionally, as extended family does. Seraphina, you have made this town, one we had never heard of, our home. Calling us to reach out to our community and seek help when we felt too proud to accept. You have changed our lives in ways we never thought possible, never dreamed would happen or never knew that we wanted. We did.

In six years, we have had an upheaval that would break some families. We have dealt with diagnosis, therapies, having to leave schools and churches. We have had to ask others to help and realized that its okay to be sad, angry and feel the feelings that surround our lives. You have opened up a line of communication with people we never knew. You have taught people to be selfless and continue to teach us as I recently learned that I need to seek what YOU want for YOUR life and learn to support each of my own children to be their own best person not the person I wanted them to be.

In six years my love, you have done more than most in a lifetime and yet you still teach. Daily. You give life lessons that remind us to find beauty in the moment, celebrate small success and understand that life isn't fair and that is okay.

God chose me to push you into this world, as he knit you together in my womb but he also chose you to change me and I have no words that I can write, speak or shout that have the ability to tell you how grateful I am to be the one you call Mom.

Seraphina, as we enter into your seventh year, I pray that you are happy. You are healthy and you know that I will be your voice until you can share your own.

You are my purpose, my gift and the reason I advocate for people like you that live with disability and teach in their every action.

Happiest Sixth Birthday,

Mommy



Sunday, September 1, 2019

To The Teacher Who Knows Her Limits, Thank You

Recently I was made aware of a teacher in Mooresville, North Carolina who publicly shamed her special needs student. While the video went viral and multiple advocates weighed in on the video, I think that its important to bring up a very important REAL topic. Not ALL educators are created equal and NOT all educators are created to teach children with additional needs, however due to funding, budgets and LAWS made by individuals with little or no experience in this field (as parents, educators, or otherwise) our schools are changing. Most schools are only hiring those with dual certifications and in the end doing a disservice to themselves, their typical students and yes, to students who are disabled. This letter is to those who are willing to say "no, its not for me". We all have unique gifts, talents and skills and not everyone should work with kiddos like my own.

To The Teacher Willing to Know Your Limits,

Thank you. Yes, you, the one who got an education degree without a special needs endorsement. Thank you for realizing that you are not made to educate children like my own. Thank you for owning your own strengths, should they be math, science, social studies or even an enrichment topic but knowing that kids with special needs are not for you. As a mom of a disabled child, I honor, applaud and understand you. In fact, I thank you.

Let me tell you, in this day and age, you are brave. Truly brave. You have cut down on jobs for yourself. Perhaps others look at you in a light that isn't as favorable but to me, you are brave. Why? You realize that you cannot give my child what she needs and you own it. For you, I am grateful. I have seen teachers who are in positions of educating kids with special needs and its apparent when they don't want to be there. Its obvious to me as a parent and I am not in the classroom all the time so just think about the potential impact it could have on that child who is in fact disabled but still able to understand that you don't know how to manage their behaviors, work with their learning style or help them to succeed.

So many of us in life want to cover all our bases. We all want to people please and be who we are not. I have long been one of these people but as of late, its just not that important. I will be honest and tell you I never wanted to work with kids with special needs and somehow always found myself in their presence. Today, I know why and I do believe I have that knack but I wanted to deny it out of fear. If this is you, don't fear it, embrace it, heck even reach out to me but if its not you, continue to speak your truth.

Choosing to teach our children with extra needs is exhausting. Heck, teaching students is exhausting but when you throw in extra needs, limited mobility or speech and then the advocate mom that stands by their side, you are just asking for a load of work no 18 year old goes into school for, yet that is what Special Education Teachers and aides do each and every day.

As a parent of children with special needs, my expectation for a special needs child is so much more. I don't expect you to babysit. I don't expect you to just teach, I expect you to be my partner. I expect that you will work with me as we drive to give my child her greatest opportunity to succeed and its a lot. I know not all teachers can handle it nor should they be made to. I also promise all my daughters staff, I will give you all of me. Always. When I say "team", I am in!

So to you, the elementary education teacher, middle school teacher, high school teacher that isn't called to teach kids like mine, I want to thank you. Thank you for knowing your limitations before we all have a difficult time. Thank you for not letting a year go by when my child may have made strides with someone who wanted special education. I know my child may NOT be what you are looking for but I truly believe that there are other children that you will reach, empower and strengthen and your ability to share your own limitation is truly a representation of the character you hold.

As we embark on a new school year, I wish you well, I remind you to stay strong and I empower you to continue to know your limits...for education isn't the same for everyone nor is teaching.

Sincerely,

A Mom Who Has One of Every Kind

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.


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 ...