Erase This Word, The “R” Word

I still vividly remember my daughters face as I watched from the stands. It was halftime and I literally saw color drain as she was listening to an adult speak during her basketball game. Anxious, I wondered, what this woman had to say?

I continued to watch, alone, in the stands, worried. As my daughter, too tall and old for her age began to walk out onto the court I saw her turn. Anxious, I began trying to read her lips as they began to move and I tried to make out exactly what she was saying. I couldn’t and it was inaudible over the commotion of a middle school game.

The rest of the game I ignored. I sat, wishing and wanting to go to my daughter and be there for her, to understand what had happened for I knew something was said. Something big.

Later, she would come off the court, after the talk with the coach, she’d lean into me and share that they had been called “retards”. It wasn’t by a coach but this volunteer chose to tell them that night, they were “playing like retards”. Her shoulders slumped, my heart hurt and in that moment, I realized this word, this word that seared through her thoughts and into my heart needed no place in our society today.

A year before, that word had little meaning. In fact, I hadn’t realized it was still used. As I buckled into my car, the cold I felt wasn’t the air but a society forgetting that this word, this slang that so easily slips from the lips of those around us packs a punch like that of a fighter in a ring, leaving pain and bruising that takes time to heal.

That night as we drove away, I thought about the word. I thought about my daughter speaking up, talking back, to an adult. I realized the pain I felt rifled through our entire family and the ripple effect of our reality was one that was experienced by everyone in our home.

For a child to understand and realize that a word, so vile and destructive was used that she felt compelled to speak up it can only be said that it needs to be removed. Normally, we condemn back talk, especially to those in authority but that night, I took exception. That night I chose to honor it because reality is, our world is made up of so many rich and incredible words, that word has no place.

Today when I see that woman in our community and on our streets, I no longer have the anger boil within me, instead, I feel sorry. I feel sorry that she has a world of language and yet chooses to use a word that takes away instead of builds up and for any parent, teacher or coach we know the words we speak help to build the strength of tomorrow.

Choose your words wisely.

#erasetheword

To the Parents Who Gave Up Their Lives So I Could Have Help in Mine, Thank You

Dear Mom and Dad,

Its nearly February when families will take down the snowmen scenes and begin decorating their home with red and pink hearts to symbolize the month of love.

This year as we enter into the month, I realize, no symbol expresses or explains the love you have shown and continue to show me. About a year and a half ago, you gave up your dream, the one you worked your entire adulthood for, to help in mine. My dream of being a mom. It hasn’t gone quite as planned and so you, in your retirement decided to be there, for me.

I remember as a child, traveling to Virginia and your plans to retire in Williamsburg, and that you did. You headed south a few weeks after I first got married and when you left, I think I must have felt much like you did the first time I set off for college on my own.

I was happy, for you but I was oh so sad for myself. Still, when the calls rolled in about a game of Train or a hole in one, my heart soared. My entire childhood you worked to give me the best life and I was grateful it was now your turn, to live your best life.

And then, autism.

You watched as my husband and I struggled through the diagnosis, weeping alongside us as we lamented the life we planned to have and cheering us on as we began to accept the new path we’d follow and we were excited when you visited and celebrated the growth you would see in our youngest child.

While we were thankful for those moments of respite. A dinner out. A weekend away. Someone to do dishes while I worked countless hours to get what my daughter rightfully deserved, you did so much and yet you wanted to do more.

About a year and a half ago, you left a church family you loved, a neighborhood that was more than a community of homes and friends who became family to be here, for me.

Today, you are always willing to be here. To listen. To give a hand. To show up with a bottle of wine, a box of tissues and some treats for the kids and knowing you are just a short car ride away, gives me peace and comfort.

Mom and Dad, this past year we celebrated 41 Years of GOTCHA’S for me, but really, I am the one who won out because not only did I get parents when you chose to adopt me, I found my best friends.

As we celebrate Valentine’s this year, I am thankful for the love you show, to me and anyone else who is lucky enough to be in your presence.

Always and forever your girl,

Bets

What Really Matters.

Sleep. Perhaps its overrated. Sleep that is, because last night, I didn’t sleep.

Yesterday was our re-evaluation at our Neurodevelopmental Pediatrician. It always causes me to pause.

Upon leaving I usually begin to try and recount what happened. I try to identify her suggestions and of course decide if they work. For her. For us. Her job is to identify my child’s shortcomings, to find areas to build upon and of course give recommendations of what she sees fit.

As I buckled my child into her seat, I reminded her I loved her. I told her she was beautiful and incredible and I was so grateful she was mine. I realize that her life is a gift, she doesn’t belong to me. She is ours to raise and parent, to love and teach and one day return to her ultimate Father but yesterday as I climbed into my seat I asked again. “Why her?”

As I navigated towards home, the first call was my husband. Then as tears fell, I dialed my mom. I tell her everything. While I lamented the lack of growth the doctor saw, my mom reminded me that others see her growth and progress and perhaps a 30 minutes snipet at the end of the day isn’t truly an evaluation but a picture at that time.

As I hung up and continued to drive I was alone with my thoughts.

It was Inauguration Day. Our Country, Divided. Our world in a global pandemic and this child that I’d give my life for deemed as not progressing. What was it that I was doing? What am I not asking for from others? What does she rightfully deserve and how do I get that for her so next year, next year there is progress.

As I continued to drive, she asked me “are you okay, Mommy?” Her voice strong. She was acknowledging emotion. That is new. Its progress but why didn’t the doctor see it?

While I wept I thought of this year and how its taken so much from so many, from moments in life to be celebrated to life itself. As I did, I thought of our diagnosis and how its taken so much as well.

In the last five years we have joined a club that no parent expects. A club where parents are given a shocking blow and are expected to reassess their dreams and goals for their child, their family and accept what is to be. Its so hard. What I imagined, what I head expected, changed.

Inclusion Class. Gone.

Childhood Sports. Nada.

Friends. Not yet.

I thought of the experiences we’ve lost and also the ones she deserves that she most likely won’t get.

A Driver’s License.

Prom.

A Diploma.

Stripped from because of who she was created to be, a child living in a typical world who is neurodiverse.

I realize life isn’t fair. It is our job as parents to celebrate the journey we are on and each child’s unique experiences but some days, some days you feel that punch in the gut and it takes a minute to see what you do have.

She’s healthy.

She’s beautiful.

She speaks.

She engages with others.

She is truly loved.

She is progressing, even if not seen in the snipet in time.

So I didn’t sleep. I wept. I held her close to me last night and thought of what a remarkable being she is and how while I can’t make life perfect for her, I can make it good.

So today, as I dry my tears, pour extra coffee and begin to contemplate what will come of her future, I am grateful. While I wouldn’t choose this, I am grateful that I am living an experience that allows me to see the big picture. It allows me to be more understanding, more tolerant, to accept others. It allows me to see what really matters.

Perhaps everything I thought I knew about what I wanted for my children, for their lives was wrong. Perhaps the gift of health, love and support is means much more. And sweet Serrie, we will walk this road together and when it gets too hard, I will carry you.

It Changed Me. Autism Has-for the Better.

Yesterday my daughter shared something. She shared that she feels like she and her sister lived through two moms in life. The mother before autism and the one that is raising them all now.

I won’t lie, it caused me to pause. Was this bad? Did it mean I wasn’t doing enough? I feel as a mom, its important to listen because when we listen, we learn. In the quiet moments, we can learn from our children. Sometimes I learn more from children about what matters in life.

My daughter talked about before autism. She talked about how I had everything planned. She talked about the summers. The summer of ice cream where we drove around and sampled ice cream. We rated the shops and blogged about it. The following summer it was supposed to be Pizza and then Fries. It never happened.

Instead, autism happened.

She talked about how our home was and is a revolving door how therapists and support persons walk in and out and how her room was once turned into a room for therapy.

As she talked, I listened and I expected to feel sad.

I didn’t. Instead I realized yes, I have changed. Yes, we have changed and yes, priorities have changed. That being said, if I look at what has changed, perhaps its for the better.

Autism has taught me so much.

First, its taught me tolerance and acceptance.

It has taught me to look for the good in each day, and yes, I’ve had to do a few resets, especially on those really hard days but still, I reset and see the beauty in so many more moments than I did before, autism.

Autism has taught me to say “no”. Or at least try to. One mom told me once to always say no. She said people like it better when you come back and say yes, rather than saying yes, and flaking.

Its taught me its okay to set boundaries, to reassess those boundaries and to let people know what they are.

Its taught me to be transparent. For so many years we faked perfection. The perfect family and honestly I thought I had it all together. Truth be told, none of us do.

Autism has taught me to accept help. THIS IS A BIG ONE. I am stubborn and I don’t let anyone in. I have had to because, well, I can’t do this alone. Five kids is hard, adding in autism is harder. We’ve allowed others to step in when I have to step out and while I worry people will think I can’t do it or shouldn’t have had so many kids, it allows others to serve and for me, I like to serve others so why not allow others to also support me?

Its taught me (and my children) that life isn’t fair. Simone eluded to that in our chat. Life isn’t fair but life is good. It has good moments. Always.

So yes, autism has changed me. I may not be the mom that packs up the kids and heads to the shore spur of the moment but I am the mom that they need. I am the mom that was intended for them and while it may not be perfect, its enough.

So parents, parents of any type, I want you to read this and realize, that we will change. Change is okay and as we change we will become who we were intended to be, the best parents for the children we are given.

To The Girl Who Made Me A Mom

Dear Simone,

I could go back to the day you were born. The cold air slapping us in the face as we hurried out to a vehicle that had been running just to make it warm enough to take you home. I could go back to colic, the first months when your body writhed in pain all day and night and the sleepless weeks that lead me to question parenting, mothering and why I had a child born with colic.

We could go back to our first experiences with early intervention. Your struggles with sensory avoidance and of course your strong willed nature that caused me many phone calls, tears and worries about today but that was all the path needed to get you to where you are. Today.

Today, you are 16, you tower over me with a presence that is most often calm, understated and aware. You feel. Wholly. Entirely. With all of your mind, body and soul. You are determined. Driven. Empowered and willing to put your neck out on the line for what you believe in, even when I may not believe in the same thing.

You are kind. A kind and compassion that can’t be taught, one that has to be born.

Simone, at 16, you are growing into the person you were intended to be. I watch as children flock to you, as your smile exudes joy when you approach others. I see your heart. The one that is willing to step up and support me when I need a little extra help.

You are the oldest. You have paved the way, you lead by example with your siblings. Your relationships with each of the littles is unique. I have watched as you have learned to support others who need it, even if they aren’t able to tell you they do. I have witnessed your choice to choose another direction when you know its right to choose a different path.

Thank you for making me a mother. Thank you for allowing me to learn. Always remember no matter where life takes you, I will be your biggest cheerleader, your strongest supported and your greatest advocate. The world will open a path for you, choose to follow it, to find the good and to go far, for you my dear have the opportunity to make the world a better place.

Love,

Mommy

When Labels Go Wrong

I remember the day of diagnosis. “High Functioning Autism”. To me, either way it was in fact an autism diagnosis but as weeks went on and people around us found out, the words “high functioning” seemed to soothe my shattered soul.

Reality was, SHE had no idea she even had autism but to me, saying “high functioning” meant something. Perhaps I felt comfort thinking she’d be the next Tim Burton or Bill Gates, heck maybe even Temple Grandin, changing the world for those living with autism and those raising and education people living with a diverse mind.

As time went on, at support groups, in communities with families of children and adults with autism, every time I introduced myself, I identified my daughter as “high functioning”. What I didn’t see was the rift that began to separate those families and myself and what I didn’t understand was that my daughter wasn’t a label.

As my mom shares “labels can limit potential and expectations, I see [kind of] a fluidity in autism so labels can’t, really shouldn’t stick in many places”. Sure, as an educator who assimilated children with challenges into her classroom long before “inclusion” was a thing, she’ll be the first to tell you that watching our lives with Seraphina is nothing like she understood in her classroom.

That being said, in our lives as time has gone on that fluidity has become apparent in our world. That once “high functioning” child is limited at times. Her behaviors preclude her from being in an inclusion setting at this time. Not just for her own safety but for the safety of others in the world but that doesn’t begin to explain all of who she is.

Our daughter is fierce and strong. She’s firey and truly has a personality to be reckoned with but she’s also bright and beautiful, she loves intensely and wants to engage with everyone around her. She is an artist. She loves babies and small animals. When I talk to others about her now, I tell them she’s everything that no text book or hours will prepare you for and she will make you a better para, teacher or therapist than you ever imagined.

I understand the need to have a diagnosis. I get it. You are privy to services you wouldn’t necessarily receive without one. I’m aware in a school setting that it helps educators meet the children’s needs but I also understand that employing these subsets of the diagnosis such as “high functioning” or “level 1” will only lead to hurt and limitation and reality is, just like a parent of a neuro-typical we want our children to be their best not the best that a label will allow them to be.

To The Mom Hiding, Come Out, You Are Not Alone

Dear Momma,

I see you, driving down the road with tears in your eyes. I see the deer caught in headlights look as your hands firmly grip the wheel. You sob, uncontrollably, afraid to utter the words that well within your body. I know you utter how much your child is loved, how you wouldn’t change them for the world, that you will get through it together but I know you’d give your life in a heartbeat to have it so your child didn’t struggle with aggression.

I know the type of day you had. The one where you listened carefully as little feet hit the ground and you cautiously walked on egg shells trying to figure out just what kind of day you may have. You tried to find the perfect clothes, that didn’t tug or pull on your little one’s body. You gently brushed their hair avoiding any snarls for fear that one misstep would send you into a place no parent ever imagines you could be. I know you spent the day offering tokens for positive behaviors and lavishing your child with the love they need to know they are so precious, so wanted, so exceptional that they haven’t been put here just to change your world but to help you change the world for them and others who will walk in the same shoes.

I know its late in the day. You’ve iced the bruises and yet your heart is broken. You carefully cradle your child and secure them in their seat to drive. A drive might fix it, or at least keep your child safe and allow you to release the pain that has built up inside, all day. As you head into the darkness I know you wonder if anyone gets it. I know you have been told you are “too much” by friends because well, maybe you are. Maybe the pain and suffering you live with is too much for others to bear, not me. I am here Momma, I am here for you.

I’m driving too, my child is buckled in. I look in the rear view mirror, I see you. I see your eyes, darkened with sadness, your cheeks, tear stained from not just the physical pain but the emotional pain. I know your fear. I live it too.

Aggressive autism isn’t talked about a lot. Most parents fear coming out, afraid to be honest with others or even themselves. They fear of saying it out loud because then, its true. They fear judgement. They don’t believe they will ever be understood and so, they live in hiding, covering up their bruises with make up, wearing long sleeves and perhaps going so far as to get tattoos to hide the scars, at least the physical ones that others can see.

Momma, I want you to know, I see you. I am here. I am you. Except, I am tired. Tired of doing this alone. Tired of hiding. Tired of being ashamed because, ashamed I am not. My daughter is more than her aggressive autism and when the autism aggression takes hold of her, she, the child I birthed is gone. She is morphed into a being that she cannot control.

As I rock her, try to gain control of one arm or another to keep her from hurting herself or someone else, I whisper, I am here. We will do this. Together. You are special and I will work through this by your side. She flails and screams unable to control herself, in that moment I find myself in what feels like an out of body experience, turning my mind away from the searing pain of the bites, pinches and hair pulling because I know this is not my daughter. And sometimes, sometimes as quickly as it started, that autism aggression escapes her body and she is left limp.

I cradle her in my arms. Rocking. Rocking her. Reminding her I am with her. She is mine and she is so loved.

Momma, come out. You are not alone. You need love. Your child needs to be celebrated, to be shared, to be lavished with the same gifts of other children who don’t live with aggression because her aggression, she can’t control and Momma, there is nothing to be ashamed of. You show up. Daily. You walk beside your child. You show them love and you my friend are their greatest advocate and there is no reason to hide any of that.

To the Siblings Who Remember How it Used to Be, I’m Not Sorry

For many years I have sat lamenting what was. Not just for myself, for you. I have asked myself if I was selfish to want just “one more child”. I have wondered if we pushed our luck saying we’d be open to whatever life God provided for us? Recently I realized that His plan was far greater than mine and while I have moments of missing what was, feeling guilty for what you lost, I am grateful for what is.

Often I think back and remember life before. In fact, I remember the day your little sister arrived. We drove nearly 30 minutes to pick you up from the school that you loved. Your Vice Principal gathered you up and scooped up your belongings, much like a grandparent and shuffled you to our car.

I remember being present at your school ALL THE TIME. From taking time to tour families with hopes of joining our incredible school family of students to coffee talk and morning prayers, I was there.

You all speak most fondly of Trunk or Treat and while I spent hours planning it and executing it with extreme exhaustion, I know when I showed up dressed as an 8th grader or with your father in tow in a light up Bumblee Bee Costume, you delighted in our family time, together.

And then, autism impacted our lives. I couldn’t be there as much and in public school, heck, you just can’t be there as much. I tried my best to be involved but there were moments I just couldn’t give what I did before.

Autism has changed the way we do things. Family outings are minimal and I sat back in awe of each of you as you transitioned nicely to the local public school. I was proud of you as you each found your niche with friends and extra curricular activities and academically, I see you. Each one of you is blossoming and finding your own way. Through the changes you never complained, even when you tearfully left the life you knew and the school you loved.

From the beginning you were each all in. It was obvious in your wish to work along side any therapist that entered our home and each day as we spent hours driving to sit in a cubicle, all 5 of us watching a closed captioned TV from a secluded room, you were captivated as your sister worked hard through countless hours in speech therapy so we could hear her words. You all dug in deep, giggling together and cheering her on every step of the way.

Don’t think that your sacrifice for this new life has gone unnoticed. Each an every day I am in awe of you. I know you have had your struggles but every day you get up and choose to be in this journey with us, as a family. As you each continue to grow, developing into your own beings with your own dreams and desires I want you to know I see a better you because of autism.

I see your gravitating to children who need extra love and support, even when its not a disability. I see you looking to find ways to help the community through social outreach and justice. I see you standing up for your beliefs–even when I may be afraid to stand up myself.

Children, this journey isn’t just a journey for your sister or your parents. This journey is for you too and I see the beauty its drawing out of you.

Often I wonder if you miss our old life? I want to know if you wish autism wasn’t part of your story but I am afraid to ask. I am fearful that I have let you down, failed you. I want you to have all that you did before and maybe what you have is better than I could have imagined.

Yesterday as I walked in our neighborhood with one of you, I watched as you began to teach your sister about mailboxes, about community service, about how to interact with children who could become her peers and I realized you may miss our old life, and that is okay, but in this new life, I want you to know that the plan laid out before you is better than anything I could have given you before. His plan to get you to your greatest self is beginning to be obvious and I am grateful I am along for the ride, watching you each give of yourself for the the greater good of the world.

Its Time For Forgiveness

The gift of forgiveness for what is and the opportunity to focus on the joy of what will be.

I still remember when I heard my daughters diagnosis, autism. In what felt like mere seconds, I reviewed every moment of my pregnancy and my daughters early life in my mind.

I wondered, was it the fact I used hairspray to go to a dinner dance before I knew I was expecting? Was her autism because I actually allowed the doctor to give me medication to alleviate my severe morning sickness? Was she living with this diagnosis because of the additional ultrasounds in the last few weeks of pregnancy to make sure my daughter had enough fluid to continue her growth within me?

As the nights passed, I listened to my husband snore. I felt more alone than I ever had and I would lie awake trying to identify the cause of her autism.

Was it genetics? I am sensitive to too much commotion. I don’t like change. I’m anxious. My husband well, he’s incredibly intelligent and has some characteristics that he and I had both discussed before her autism diagnosis that caused us pause.

Or was it the reaction? The one where my son told me that his sister had hives up and down her body within moments of a vaccine. Was that the cause of her life changing and the life she was now to live?

No matter where we were or what the reason was, we didn’t love her any less. In fact, if we loved her any more, our hearts may burst but how my own guilt washed over me every single night as I lay in bed. The warmth of my tears and salty taste, the only thing keeping me grounded to this space and place in time. While I wanted to lay in bed, forever, but I knew I had to keep things, normal, or as normal as they could be. For her. For my other children. To salvage my marriage.

In the coming years those sleepless days and nights dragged on. but this year I knew it was eating time to stop. This year there was no turning away, no break, no vacation, even during the school day from autism, it became clear.

I couldn’t live this way.

I wasn’t the mom I once was and I didn’t want my children to remember how they lost their sister and their mother to this diagnosis.

So recently, after years of pain, I decided, I may never know and truth be told, I don’t need to know. I needed to forgive myself. I didn’t choose this and genetics or bad luck, it didn’t matter, I always only wanted what was best for her.

My daughter is my daughter, first. Autism is a part of her for sure but she’s so much more than a diagnosis. She is beautiful. Her smile lights up a room. She’s silly and inquisitive. She is cunning and smart. She’s got the ability to wrap virtually anyone around her little finger.

She’s growing each and every day. She’s developing a personality, not anything like I’d ever dreamed but one that I cherish. I love her, not for her autism but for who her autism makes her.

I have decided that no amount of time revisiting the past will change who she is. I also know I am doing everything I can to support her and so its time. Its time to forgive myself. Its time to stop focusing on what was or what could have been or why and focus on what is and what could be and how.

And so this year, this year, I have done it and more than that I have chosen to focus on something outside the autism. I have chosen a word to represent her life, my life, our year and her future and that word is “joy”.

Joy in the moment. Joy in the experience. Joy in what will come because living in the past will never allow that nor will it change what could have been and what is today is starting to feel incredible.

I was chosen. Chosen to be her mom. I don’t know how or why but I she is a gift I never expected to receive.

And so, I hope, you too can forgive. Yourself. You can forgive the “how”, the “why” the what could have been and find the joy in each moment, in the little things, in the things you used to take for granted because this life is the only one we have and is reason to be grateful for the present and have hope for the future.