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

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 ...