Be Honest.

This is our today.

This is our now.

This is months of work, intensive work supporting her, listening to her, hearing her.

This is months of undoing the fear she had, the anxiety she felt and today, I sit, wondering what to do.

As a mother its our job to support our children the best way we know how and honestly, Covid has taught me that with her. We have had our daughter in our home constantly for a year. An entire years with our daughter as parents and as her educators. We have learned what causes her stress and that anxiety and stress often turns into meldowns and when she was in school, restraint.

I am afraid to send my child back to school. Its not about the school loving her. They do. I say it all the time. The staff at our district is the most compassionate, loving group of individuals but educating a child with autism, creating a behavior plan that is executed properly is more than love. Its more than that.

While some parents are counting down the days until all their children can be in school, my husband and I fear it. We fear the return, the inability of our school to support her, to give her what she needs. We worry that they will undo all we have done.

I don’t fault the school, when a child is having behaviors often they are scared. How do they protect the child? Other students? Themselves? I get that often they turn to restraint but I will tell you, it broke my child. As she became more verbal, as we worked consistently here at home with her therapists willing to get in to her world she spoke.

The first time she told us “please don’t restrain me” I knew, she had been scared. I also knew that when school said that they almost felt she needed to be restrained to calm, I understood that they did not understand her. In the moment she used her words it was obvious to our home team that in school, she escalated to that extreme because she knew once she was restrained, it was over. She knew there was a break. A trip to the nurse. The support of a counselor or the principal. She knew then there was down time.

In the last nine months, we have worked to implement strategies and she’s become a different child. Yesterday we met with school for what will be our weekly call. I voiced my concerns over her return. They heard me. They acknowledged me. They understood. They also realized that they could not predict how she would react, how her plan would transfer to school and so I am scared. They won’t say that they won’t restrain and that scares me.

I am scared for her. I am scared for us. I am scared that all the work, time, effort and money we’ve put into private therapies will be lost when she returns to her school.

Our school systems are broken. Our schools don’t meet the needs of all students, I doubt they meet the needs of most students. I hear it from parents all the time.

This is our story but I know we are not alone. As I write, tears fall. Not for my child, for all children. I ache for the administrators, the educators doing their best measured by standards instead of individual growth and opportunity for success. Children often don’t fit the box socially, academically, medically. How are we as parents calling for better? How are educators saying, we need more? How are administrators asking for change from those in power? Are we changing the system so other children have a different path, a path of peace, a path of learning, socially, emotionally and academically? Reality is, its time to speak up for change. Not just for those who are disabled or need more support, for our

As I prepare for my child’s IEP, I carefully consider what is right and I wonder, is it this school?

I Will Sit With You In the Darkness

In the darkness, quietly a caterpillar transforms. Using its energies, behind the scenes where no one can see. In time it carefully begins to break free, emerging into the world, a breathtaking beauty.

Seraphina, right now we are in our cocoon, in the darkness but we are not alone. So many people are enveloping you, with support, with love and my dear, I will sit with you until you finish your transformation and emerge, the person I see and know you will be.

I want you to know, I have watched as you have worked hard each and everyday to grow. Your work hasn’t always been easy. Its never gone unnoticed. Therapies in the house, your safe place, since you were young. Preschool before I was ready to let you go. Days spent at a center and therapeutic camp while other kids your age ran through the yard playing and basking in the warm summer sun. I held my breath as you attended kindergarten, knowing it wasn’t right but trying my best to trust the process. Learning along the way. I have stood by, watching, waiting, taking it all in to see where you need support and how I can get that for you.

In the darkness we have faced pain, emotional turmoil and the beauty of growth and success. You are not yet transformed but transforming each and every day. I want you to remember as we sit in darkness that you are not alone. Ever. You will be loved and supported always. By me. By others. Always. At night, I crawl into your room, look up over your bed and pray. I pray for your health, your well being and most of all that you know you are perfect for our family and that you are never alone.

In the darkness, the emotions come, the realization that for so long I was searching for who I was intended to be, then the reality hits me, full force, you are my reason, my purpose and why. In your journey you have taught me more than I could have ever imagined and I know that no matter what, no matter how hard the road that I will sit with you in the darkness until you emerge, a beautiful butterfly.

To My Daughters During Women’s History Month

Dear Daughters,

I want to tell you about Women’s History Month, but more so I want to tell you about how you see women making history each and every day. I want to tell you how each of you inspires me to be a better woman myself.

Being a female is a gift.

True story.

We are able to bring life into this world, to nurture to show love and compassion without a second thought and to have the same rights men have.

We know this wasn’t always true.

In each walk of life, women have stepped up, stood up and spoken up for change. Some may have just made change for themselves or perhaps just for a small group while others made change for communities, states or even the world.

No act was too small and all had an impact.

To my girls, in Women’s History Month, I see you.

I see you making history.

Perhaps it won’t be on a grand scale, that is okay.

Perhaps it will be just in your family, I cherish that.

Maybe you have your eyes set on a group, as a leader, an activist, a voice for change, I honor that.

Each of you is unique and each of you has purpose and I celebrate that.

I want you three older girls to know something, you were each given to me to grow so that I could be the Mother that was needed for your sister, Seraphina. Without each of you, I would not be the effective mother I am today working to help her on this journey.

Each of you has taught me so much.

Simone, you have taught me patience, the value of honesty–even when its hard and the gift of awareness to acknowledge your shortcomings, find your strengths and go after what you believe in. I watch and I am sometimes taken aback by your voice, your ability to say what is needed, even when its hard.

Cecily, you have taught me to be strong and to fight for what you believe in. You have also taught me acceptance. You have taught me to accept adversity even when its not what you want or wish was different. You have taught me to feel the moment, to process it all and move on. Your determination and courage to honor new paths is something I respect more than I can ever say.

Felicity, you have taught me compassion and love. Not a day goes by you aren’t looking to help the underdog, to lead and teach, to grow others. Your heart is something that is talked about not just by me but by others to me, often. Honor that spirit, embrace that love.

Girls, you have become the leaders who have changed our history, called me to change, to be better, more accepting, understanding and to have courage to stand up even when its hard.

This March as we celebrate women and Women’s History Month, I want you to know, I celebrate you. With children like you growing into adults I look forward to a stronger, more compassionate future. Never stop living you dream, being who you want to be and calling yourselves to grow.

With Love,

Mommy

On Wednesday’s We Wear Pink

I was getting ready to shut down my computer when a friend posted about tomorrow, about wearing Pink. About Bullying. I was grateful.

You see, I wasn’t thinking autism or even my own children but back to life before we were aware of what bullying was.

I thought back to sixth grade, when I had my stretch pants pulled down. It was outside science, after lunch. I stood holding my backpack when the local doctor’s son pulled my leggings down and laughed.

Bright red, I put myself back together and walked in. The teacher told me if I wore button pants, that wouldn’t have happened.

Then there was seventh grade, I sat in class and began to itch. I realized that my classmate poured itching powder down my shirt. As it crept into my undershirt, I became uncomfortable. I was afraid to speak and went home to an empty house and showered in the darkness, sobbing about what had happened.

Then there were the comments. “Your dad will have to pay someone to marry you”. “You were so ugly your mother gave you away” and of course the cliche comments that meant nothing. “You are a carpenters dream”.

I remember walking through town, hoping to make it to CCD before the popular boys saw me and slammed me up against the wall and made comments about how no one would know and if they did no one would care if I was gone.

Silently, I held it in. My mom knew some of it but I always downplayed it, I didn’t want her to hurt and hurt she would.

I remember my hands being smashed in lockers and hoping the physical pain would continue because it hurt less more than the comments, the embarrassment and the shame.

Then it happened. My mom decided my school wasn’t good enough. I needed more and off I went to private school.

It saved me.

Perhaps she knew more than I thought she did. Perhaps she didn’t want to let on to what she saw in my eyes.

Bullying.

It is real. Thankfully there are things in place today that weren’t before. Thankfully kids speak more openly. Thankfully I grew up and grew out of what was.

On Wednesday’s We Wear Pink. Tomorrow I wear Pink for the 1 in 5 bullied today.

Life isn’t fair.

Its just not.

We all have our burdens to carry.

Its okay.

If you need help, I am here and one day I may need help too.This journey is unique to each of us.

This year is challenging all of us.No matter what, I want you all to remember each and every one of you is valuable.

You are strong.

You are courageous.

You have purpose.I know some days look dark.

Here too.I know some days you want to give up.

Here too.

We are more than a pandemic, a government party, a religion.Each of you has the ability to make life better for those you meet.

I do too.

If you need me, I am here.

Yes. I am struggling too!

Today was hard. Really hard but it doesn’t change my support for you if you need me. If you are on my “friends” list, I am here.

For you.Always.I won’t ever ask for repayment.

I will just ask you to “be kind”.

Let us extend that kindness all around and to risk being cliché, throw kindness around like confetti.

To the People Who Choose to See, “Music”

I want to take a minute to write to you. I have hesitated to write on this topic but I figured I should as I am sure no matter if you planned to see the movie “Music” before, with all the controversy now, it has peeked your interest. I can’t blame you. If I didn’t know autism my interest would be peaked too.

When the chatter initially began I started to research it a bit but honestly, I like Kate Hudson and Leslie Odom Jr. and so I didn’t want to tarnish my views on them. In fact, I wanted to believe that the people who had seen it or even the trailer were being over the top because they lived or were raising a loved one with autism.

Then this week I spent some time with other moms, like me, raising children with autism and based on their words, their comments, their opinions, I had to look.

I queued up the trailer and almost instantaneously I wanted to vomit. Within a few moments it insinuated that there would be a restraint. I couldn’t watch anymore and so I turned it off.

Quickly.

You see, my daughter, my beautiful daughter has severe autism. In our world, sometimes there have to be restraints. To keep her safe. To keep others safe. Its happened both at school and once in a while at home.

Each and every time I hate it. I hate that I have to stop her, to hold her from hurting herself. Its the most difficult part of autism.

I remind myself and tell others, I could do autism all day, if there was no need for restraint. I think any person in on a restraint with any child would tell you the same.

The restraint is hell. For us. Maybe even for her and we all suffer after. During the experience and after.

Watching the trailer my eyes welled with tears, I began to imagine my child, out of my sight with someone restraining her.

I couldn’t watch.

To those who take your time to watch this I want you to know that restraint, unfortunately is real and while sometimes necessary, is one of the most painful moments in a family’s life. You need to know that this movie, being shown is causing every mother, like myself living with a child like “Music” to be impacted. Emotionally. Negatively. Knowing others will now view our child differently and knowing this is how children like ours are being portrayed.

I’d ask you not to see the movie but I get it. We are human and this is part of who we are. People, looking to learn and often to look at the difficult moments in life.

If you do see the movie, I want you to know, I don’t hold Sia in contempt. In fact I think she was simply trying to bring light to something and was misguided, uniformed, under educated because the reality is her story is not right. Its not what we all live and if you look at the cast, the writers, they don’t know autism the way a person with autism does, the way a parent raising a child with autism does.

Sia is right. We do need to bring light to the situation. We do need to educate others. We do need to teach and learn to share our world but we need to do it our way, on our terms with respect to those who live this life day in and out.

To Our Paras, Thank You

For parents of children with additional needs, sending them off into a school building is hard, perhaps harder than sending a typical child–at least it was for me. I will never forget watching that little bus pull away, my daughter’s face pressed to the window and wondering “would she be okay?”.

For many of us, that worry continues day in and out, there is reason to worry too. Often our children cannot communicate in a way that is effective, to us, even to their teachers and once in while the fury boils within the community of moms with special needs when they learn of the way a child, like their own was treated.

Last week I learned of a child in a district in Ohio that had a paper stapled to their head. The manner in which the child was treated is in fact a gesture to intentionally embarrass this child, visibly, for what forgetting a water bottle? I was reeling with frustration and anger. First, would they want their child treated that way? Second, the district “reprimanded” the aide. In my opinion, its grounds for dismissal-at least.

Then I thought about our school. How would they have handled a child who didn’t have a water bottle day in and out? I am sure a note or two would have gone home. In a folder or backpack. Maybe the Case Manager would call and make a request but if there was no movement, I am certain I know what would happen. One would be bought, for the child. Without hesitation.

I am truly grateful to say that I can’t relate to the way this child was treated. Why? Our district chooses to hire the best paraprofessionals they can find.

Each Paraprofessional my daughter has encountered has walked into our school with the opportunity not to just change the day for her or other children they are working with but with the mentality that they have the capability to change their lives-forever. Its apparent they don’t see this as a job but as a commitment to make the world a little bit better because they have touched some of the most vulnerable of our community population. I am in awe of their efforts day in and out to support, love and nurture growth within each individual to achieve their greatest potential.

Often I see comments about Paras and I count myself lucky because I never have to worry. While they feel the exhaustion other teachers do at a pay much less, they continue to show up and work. Hard. Every. Single. Day.

So to my daughters Para, the Paras she’s had before and the Paras I know in our district, thank you. Thank you for choosing this, the path you are on here and now. I see you. I watch you and I know you are making a difference. Thank you for making it so I never have to worry that my child will be demeaned, embarrassed or treated as anything less the beautiful child she is.

Do I Worry?

Yesterday, I stepped out of my car and into the brisk air, I felt a feeling of joy radiate within me. The sun worked its way out of the thick clouds and the snow insulated the earth making it feel warm even though it was frigid. This day had been one I had been longing for since this pandemic began.

For a moment, I paused and looked around, it was obvious I was one of the youngest there and I hesitated for a moment wondering if I’d take a vaccine of someone who needed it more than I did? Yes, I have a heart condition but more than that, I have a child that needs me.

Sure, all children need us but when you have a child with additional needs, there is the true fact that they need you, more.

As you have children and begin accepting the reality of what could be, most parents take time to plan who would take their child in their absence but since having Serrie, I really don’t know.

I have my parents, but they are getting older and her strength, at times is too much for me to bear. I have a friend, her extra mom, who has said she will but can you place a child with so many needs that would add additional strain on a family that isn’t her own?

I’ve always wondered what would happen? What would the reality be if I passed before my children were grown? Since Serrie was diagnosed, I that wonder has changed to worry. How do you ask someone to say “yes” to so much more than raising a typical child? And so, I worry.

I have listened to my children as we drive devising a plan, from the “rich” sister who sends money, to the brother who has a trampoline and pool for sensory input, but today, they are too young and losing us would be too much, for them, for her. For anyone to take on a family of five.

The pandemic has weighed on us all and there have been moments when the strain in our home is palpable as my husband was determined to keep us safe. There has been extra strain on those of us who have children who have additional needs. What if they get sick? Will we be able to support them in the hospital? What if we get sick? Who would care for them if we were hospitalized? That reality has been one that is nearly too much to bear.

As I moved through the line, tears began to well within my eyes. The moment of getting vaccinated sent a wave of relief, the weight lessened. I’m aware that the vaccine isn’t a sure fire way to protect myself but in this pandemic it makes me feel better, more confident that with appropriate safety measures, we will in fact be safer.

After the vaccination, as I sat and waited. I looked around and saw a family, what my family could look like in 40 years. The mother, stood stoic beside her daughter while she was vaccinated. Shaking, she steadied herself and I thought, “she will be safer”, I knew, the mom will have less worry and I had hope that this worry I have held within myself will subside and hopefully, one day I will be here to guide my daughter like that mother when she’s 40 through anything that life may throw her way.

To Therapists, We See You

Dear Therapist,

I want you to know I see you. I see that this year, in the middle of the pandemic you were assigned to my daughter and going in you probably had a lot of questions. Her reputation precedes her. I learned that earlier this year. Unfazed by what you had heard, you jumped in, head first and in less than two months we see so much growth and we know you are impacting her life, our lives for the better-forever.

I know my daughter is a lot. Working virtually, I know, is so hard, especially in speech. You show up. You jump online, you engaged and you get your students to progress no matter what stands in your way.

I want you to know, I was worried. I worried about this change. You see, you had big shoes to fill from our last therapist and I wondered what this change would mean. What I didn’t realize is although I had doubt, I didn’t had never witnessed you in action and my doubt turned to wonder which has turned to awe. You inspire me. It is apparent when a teacher, a therapist, a support person is in their element and you, you are not only in your element but gifted in your profession.

Every morning, you are the first face we see outside our family and no matter what type of mood my daughter is in, you step up. You are there. You rock the session. Every day. Your peaceful presence sets the tone for her day and we can’t put into words what that means to us. Yes. You have a plan but if she’s not in it, you can change, quickly on a dime and you do it gracefully.

It is easy to say thank you to teachers but so often, therapists are left out, we don’t get the ability to see the work they do, the efforts they put in or the growth that they bring to your child, but in this pandemic, in this time in life when things seem so wrong, seeing your support of our child is so right.

If ever you are feeling down, I want you to know, our entire family is blessed. Blessed to have you on our team, by our side, helping grow our girl. We look forward to walking beside you on this journey and growing into a better tomorrow.

Thank you. For not giving up. For being strong. For staying the course even when our daughter is tough. You are truly a bright spot in our lives.

Much Love

The Messy Blessy Momma

You Are Enough

Hey Momma, I know you just got a diagnosis. You are wading through paperwork and trying to discern what you need to do RIGHT NOW. I know that you are pouring your entire self into the diagnosis, your child and how to help them. You are up, with the light on into the wee hours of the morning reading studies, joining support groups and identifying ways that you might be able to help your child. I was there but I want to tell you to slow down, maybe even stop for a moment.

This is no sprint. Its not a marathon. This is an IRON MAN and Momma, you are in it for the long haul and you are strong.

Us Momma’s,we all have different paths on this journey. I don’t know which way your path will curve or if there will be medical complexities, if you have support of a spouse or if, like me, you are a Momma with a big family. No matter what I want to tell you something important.

I want you first, to breathe. Put on YOUR oxygen mask first. Sit down and remind yourself what makes you happy. Hold on to that. Cherish it. Then, if you are married, focus on that marriage. The coming months and years will be rocky. You will be faced with challenges most marriages aren’t and Momma, these challenges may almost break you or you and your significant other. It did us. I won’t lie. It was hard but we didn’t want to be a statistic. We made that choice and today, we still have to work on it because this journey is easier when you aren’t alone.

Momma, I also want you need to take the time for your other kids. Your little one, the one who has been diagnosed is going to need you but your other children, they still need you too. Maybe even more. Their world has been rocked too and while maybe their lives didn’t change that much, that diagnosis is weighing on their little hearts.

I’m not trying to break you down, not trying to shatter your spirit. I know you have high hopes. Heck, in our first year, I dreamed of being one of those Headline Stories that you see on TV or read about in the paper, about how determination, therapy and support gave my child her best chance and now she’s Prom Queen or going to college or maybe even becoming a Lawyer or Advocate. I’m not. I won’t say my daughter will never be, but today she is not and while I was driving myself with desire and determination to “fix” our journey, I lost sight of who she was and who she was teaching me to be.

Momma, as you enter this journey, there is no right. There is only right for you but while you are buried, I want you to remember to come up for air, to put on your oxygen mask first and to remember you and your family are more than this diagnosis.

Much Love,

Another Momma

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