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

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.