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.

Keep the Faith

Parish Narthex decorated for Christmas

I should have anticipated a challenge in my faith journey when at 18 months I had to sprint up the aisle of our church and was met by a woman wearing beautiful heels and a red suit. Looking up I gasped the woman, beautiful, she smiled. Holding Seraphina she smiled at me, I was teary for she had already lapped the entire church twice during the Consecration. I was hot with eyes on me. I felt them. I saw them.

As I scooped her up mortified, I carried my wiley little love out and hoped the other four children would make it through mass in one piece, alone. Thank goodness that day it was daily mass or I may have been uttering swear words in a place of worship under my breath.

While I stood in the Narthex of the church I continued to cry but chalked up the crazy behavior to Seraphina being the fifth child and my inability to control here -exhaustion.

As time went on, our trips to church became more and more challenging. I still remember sobbing after multiple experiences in multiple churches where people asked us to leave and one experience where I was told never to return–not by a priest or deacon but a Parishioner.

As time went on, I believed I was beginning to lose faith. Truth be told, I needed to dig in deeper and rely on my faith more because my children, all of them were suffering with my anxiety each week as we piled in our car and headed to mass.

During the pandemic, we began attending another Parish, one in town. We had been there before, prior to sending our children to Catholic School. We returned. The first week, it felt good. The second week, it felt better. The third week, my sweet Seraphina had a day and while I exited the parish praying I wouldn’t cry, I was met with a woman who became a guiding light in our family’s return to religion because reality was we had never lost faith, we forgot to lean into it and ask others to accept our family, for who they are. Slightly messy but full of love.

I knew to make this work, I had to let go. Of my expectations. Of what others think of us and today it happened. She sat quietly coloring during the readings–as she always does but when it was time for the Eucharistic Prayer, she did something that blew me away. She stood. I walloped by husband smiling beneath my mask celebrating this triumph. She stood, unprompted. And when we knelt, she knelt too. I sucked in my breath to hold back tears. I tried not to cry and whispered a short prayer of thanks. Today, I was reminded I had the faith all along I just had to wait for His time and my heart being open to hearing Him and where he was inviting me. To follow his plan.

As I reflect, I am reminded of tonight’s homily. Simply put it was about The Holy Family, about Mary, rocking her infant, wondering about the future of the child she held. We were reminded of the way one feels with new life fresh in your arms, full of happiness, wonder and perhaps anxiety over what may be to come. We all feel it, and Mary said yes. To her husband, to God, to her Son and promised to be faithful in His journey because his journey will be better than any journey we have planned for ourselves.

Today I am reminded why I too, say yes. To parenting. To faith. To all my children. Even in darkness, He has a path that will lead me to His light.

Let us celebrate the joy in the moment, let us pray for strength and peace and as we leave this year behind, let us remember that His plan is greater than any we can plan for ourselves.

The Gift of 2020

Its nearly Christmas. As the house sleeps quietly, I have taken time to sit and reflect. This year has been a lot. I won’t lie, we have had more than our fair share–as everyone else has, but there has been beauty. Sometimes, when barely treading water or praying to be able to come up for air, we forget. We forget there is beauty.

When the pandemic began and we had our “two week break” from school, I was up for anything but after a broken collar bone, numerous tries to climb out a window and a child shaving her head, I realized I needed help. More help.

Our daughter has been diagnosed with autism since she was just two years old. Its been a journey. From not having an insurance plan that covered therapy, to a fight to obtain it and then realizing the insurance I had didn’t mean we would have the therapy right for us.

For years, since we had the therapies covered, we have tried to find a company that would work, for our daughter most importantly and for our family. We had found great therapists but for one reason or another, they never worked out.

Enter Covid.

Enter my need for help.

Enter Miranda.

Yes, Applied Behavior Analysis Therapy is controversial but for us, its right and the greatest gift we have been given this year is this young woman, trained in social work, who is with us, daily.

In July when we first onboarded with the company, I was concerned. The first therapist left without returning, if she could have run while screaming she would have. We know, our daughter is a lot. She’s not anything like any BCBA or ABA Therapist has ever seen but she’s ours and she’s incredible.

Finally, the call, the company found what she felt was a perfect fit. Enter, Miranda. She was right. She is perfect. Since July, almost every day, Miranda makes the hour long commute to love our daughter, where she is that day.

Yes, there is work. Yes, there are challenges. Yes, she pushes her but in four short months, we have seen so much growth. Not only have we all fallen for Miranda but we have seen Miranda give us the greatest gift we could ever receive, glimpses of the daughter we once knew, the one we once had. One that interacts, one that laughs, one that plays and one that is beginning to understand more and more each day.

We could all focus on what wasn’t in 2020. We could focus on the loss, the pain, the suffering. Its been here. For all of us. However, I won’t. I will choose to see the gift of 2020.

Dear Miss Miranda, you have made our world the best it could have been this year. We truly are grateful to you.

The Christmas Gift

As a child, did you ever wake early with anticipation? Were you one of the children who rushed to see exactly what was under the tree? I was. Patience was never a strong suit and surprises are something I am still not a fan of. In fact, Christmas memories are some of my favorite from my childhood. My mom, her sisters, sometimes her brothers, their spouses and up to 11 kids crammed into one home for up to a week celebrating not only the magic of Christmas but the blessing of life, of family.

We had some crazy times, from almost losing a child in the snow to my all time favorite memory waking early to meet my cousin face to face crawling around long before we were “allowed” to be up. As we faced off under a pile of gifts we both startled and then gulped in as much air as possible to keep from blowing our cover. The belly laughs and joy we held within continues to resonate in my mind nearly 30 years later.

The excitement of Christmas and preparing our hearts and mind for the holiday season could be compared to the preparation for parenthood, for the dreams you create for the children you expect. Sometimes however, you receive the unexpected. In those moments, emotions swell. Perhaps your weighed down by disappointment, fear, anxiety, pain, sadness. Perhaps you wonder how you will feel strength or find a way to be thankful for a life you didn’t anticipate? In those moments however, if you take a deep breath and step back you may begin to see it, to feel it and to understand the gift is so much more than what you actually wanted it was in fact what you actually needed.

Autism is like that. The last five years have changed almost everything in our lives. While it has taken so much, in the end, when I choose to look its given.

Today, I reflect and see how much I have grown, how much this wasn’t supposed to be a journey but my destiny to challenge, change myself and walk beside a child who was intended for me.

In dark moments, I have found what matters. People who care have come out of places I never expected. True friends have stuck around and I have been blessed to meet people in my life I never would have encountered if it weren’t for autism.

Autism has taught me patience. Its taught me to be present, to acknowledge the small moments of growth. It has taught me that unwrapping the most precious gift may not look like what I wanted or expected but in the end its better than I could have ever imagined.

As this holiday season is upon us, I could choose to be sad, to be mad, to be angry for what could have been or what I wanted–I spent too many years like that. Instead, I can choose to seek the joy in what is, in the moments that matter and cherish what we have because reality is, there is a gift when you choose to unwrap it.

Those Precious Hours

If you have a child anywhere on the spectrum, chances are once or twice you have wished for just a few more hours of sleep. Heck, who am I kidding. Hours? Minutes or seconds would suffice.

Its no secret that children who have autism often have difficulty sleeping. It has been estimated about 80% of all children with autism struggle with sleep issues which often lead to other issues in these children’s lives. I do believe that its because they are constantly thinking, learning and wanting to know more however I am no scientist and recently scientists have been looking at a correlation between melanin and persons living with autism. For years, my daughter was one of those children who struggled. Even though her infancy had passed, myself or my husband would blearily wake and try to care for her at all hours of the night. That works for a short time but one can only take so much. Once in tears I told my husband I just couldn’t go without sleep anymore. His response? “You know they withhold sleep as a form of torture sometimes”. He’s right and honestly after a few months its a challenge but years into this journey, we finally found what works for us.

While our daughter may have a day or two each year where she struggles with sleep, we have found what works for us at home and now she will even begin her bedtime routine herself when she feels tired. Our process may look different from your own but I can you a few tips about what worked for us and perhaps you can use what works and create your own routine and hopefully find yourself and your child better rested for it.

For us, we have made a conscious effort to make sure we have the same routine putting her to sleep each and every night. Each night before she heads to bed, she takes a warm bath. We add a drop or two of lavender oil. While we don’t set her exact bath time, she begins to calm herself and she knows that this is the beginning of her bedtime routine. Once clean we head to the bedroom and get cozy in dim light. I have found when all the lights are on her body struggles to begin calming. Once dressed, she knows its time to brush up and floss up. Then she snuggles into bed with a book or two. We read together and tuck her in. If she’s had a busy day and seems overwhelmed we may use melatonin however most often after books she drifts to sleep easily.

Sometimes staying asleep isn’t something she can do and being a child who elopes and gets into trouble we needed to set up a system where if she woke, she’d stay in her room and stay safe. A friend told us about something she used for her toddlers and we had to give it a try. For kiddos with autism, many find boundaries and schedules to be of comfort and so we picked up Mella by Little Hippo. This little alarm has been a gift. With varied colors that allows your little one to know when its okay to leave the room, even when they wake, they stay safe in their room until Mella turns green. While this took a little practice–read lots of trips BACK to her room when we first got it, its now common knowledge until Mella turns green, our sweet girl is in her room, even if its the middle of the night.

While no sleep plan is perfect, with a plan in place and consistency in following that plan, you may find yourself a better nights sleep! Here is hoping for a Silent Night this Holiday Season.

To the Friend Who Makes this Journey Okay

I won’t ever forget the day we met. Your quiet presence was something that was beautiful. It was apparent from the moment I saw you that you were a gift. As we sat, wide eyed, entering our first year of school with our babies I wondered if you felt the same way I felt? I wondered if you longed to have that time that seemed to be stolen from us. When our babies should have been home playing with toys, going to library story time and joining Gymboree, we were putting our toddlers on the bus for support.

I knew moms who had children on the spectrum but finding someone in the stage I was at seemed almost impossible. Then there you were. I remember exchanging numbers and the delicate dance of “mom dating began”. After school one day we had our first play date for the kids who barely acknowledged each other and I knew I wanted this to work but little did I know that instead of work, I was finding more than a friend, a sister whom I had never had.

We have been through more than the average pair. Pair of friends that is. From late night phone calls to a weekend of respite, we have a bond that has grown through the years. We see things most parents never will. We have hopes most parents won’t understand we have a bond that can’t be created but is given because we are in this, this life, together.

Often I lament what autism takes from our family. Its takes a lot but it also gives. Sometimes you have to sit and focus on what it gives to realize how lucky you are. Autism has given me you. A friend that understands the life I live without explaining. A friend that listens as I fearfully cry and worry about what tomorrow will bring. A friend that celebrates the moments that seem insignificant to others. A friend who has an understanding that others never will, because they can’t.

As we sit within the holiday season I realize that there are things to be thankful for and one of them is you. Thank you for being the friend I wouldn’t have without autism. Thank you for becoming my family. Thank you for accepting my daughter as she is, for loving her where she is and in turn loving me as well. Thank you for your listening ear, your honest voice and your presence that soothes and calms me.

Truth be told, I couldn’t have picked a better friend to walk this journey with and honestly I don’t know if I could do it as well without you. No matter where we are in life, I will be here for you. I will be here for your family. I will be here for your boys. Always. My friend, thank you for making this journey one I can handle especially with you by my side.