Saturday, June 16, 2018

Milestones

Recently, okay, well every few months I watch as posts pop up of children whom I shared a pregnancy with. At first, I take a deep breath because I know when I look, I will wish. I will wish my child was typically abled. I will wish that the mothers and I would still hang out, even if it is just at the park but then I sigh. Its not my life, nor the path that I have been given but I can still celebrate their accomplishments if I remember that my child's milestones are just as important even if there is no cap and gown nor shiny trophy or medal around the neck.

You see, two years ago, when Seraphina was diagnosed with autism, I hated seeing those posts. I was completely jealous about the milestones that the kids whom she was born with were reaching but truth be told, Seraphina is reaching her own milestones too and BECAUSE of her autism, I respect them. I respect them more than I ever respected my typical children's milestones in years past.

Today, we went to a Rugby "Festival". Its not like a festival one might expect. There are no rides, no ponies and no games to buy tickets for. Instead, this "festival" is a number of Rugby teams that join together to create a unique group of individuals playing a sport that seems to be receiving a cult following in our little state.

Last year, I tried to take Seraphina to said "festival". She sat in her wagon a little while but within moments she was gone. She dashed around fields, causing me stress and made me NEVER want to set foot on another Rugby field ever again, however my other kids, the children who came before her, they loved the sport and their dad, first generation American, born to a father of British origin, he too loved the sport that his dad played as a child and so, it called us back.

I tried to get away. I did. For me. It was easier but this year, those fields, that ball, the coaches called us back. With my middle child leading the pack, they begged once again to return to a sport that they hadn't grown to like but instead grown to love and the first festival? It would fall on a weekend when their father wasn't just away, he was out of the country.

In a week that was laced with illness and exhaustion, I planned to take these five kids across county lines to begin their playing season. I was apprehensive. You see, as I thought back to last summer I wondered how I would make it through one game let alone an entire festival, on my own.

I prepared. I had snacks, fruits, veggies, water, juice. I had iPads and phones, charged with downloaded videos of "Little People" and I had slept. I went to bed before 9 p.m. anticipating that I would spend a majority of the morning chasing my small, loud cherub around the fields as my older kids tried to pretend she A) wasn't their sister or B) was going to disappear into the abyss of the air conditioned  car.

Neither happened.

Neither needed to happen because as I prepared, I provided opportunities to success.

I set an alarm for hours prior to their wakeful moments.

I packed up, got dressed and woke them each with warmth.

We ate. We prepared. We drove. We arrived.

As we did, they embarked on yet a third year of Rugby and I prayed I could survive.

I asked a friend to watch my kids, the ones who may need help and I planned to focus on my own child.

Tuesday we met a woman who I will say became my friend.

Earnestly I told her about Seraphina and instead of questioning me, she listened and accepted me. She accepted Seraphina. As I posted on Facebook, another friend, a friend for years, from when I first had Seraphina told me to find her daughter so Seraphina had a playmate. I asked for prayers and people must have offered them because today, today was a milestone.

There was no cap and gown.

There were no shiny trophies.

No pretty pink ribbons wrapped around a bronze medal but still, I won.

Seraphina made it four hours. She played. She found a friend. As I talked to the foster family, he told me of his own journey with autism an his son's journey through special needs riding. It gave me hope and his suggestion of finding her a place to ride made me wonder.

Then, she sat. She waited. Patiently in her wagon as her siblings played. Each on their own team, four teams. She watched and snacked. Waiting for the right moment to visit each at their game.

She also asked her brother on his break to be with her, and he, as her protector and best friend, obliged.
Today, however as she rode on my back, one of the Coaches and I chatted. We chatted about Seraphina. we chatted about her special needs and we chatted about how she's changed our life and today he made a comment that will be with me for a while.

Not today, not tomorrow but when she's ready, they are willing to welcome her. Special needs and all. It may not be right for her. It may not be "her" thing but no matter what his words resonated and meant so much. Her differences didn't mean she couldn't be or wouldn't be, no matter who she was, she was welcome and today, to me, that was a milestone.

Thank you Base Camp for your program. Thank you for your dedication to health and wellness and thank you for your ability to welcome kids who may not be your "picture perfect athlete". You see, in the words you shared, I hit a milestone. The first time there wasn't pause about my child being welcome, about my child being included and about my child trying to play.

Today, while her siblings enjoyed a day of play, and I tried to be where they were as much as I could, Seraphina also reached a milestone, without medal, without honor...to just be included for who she is, entirely.

Thank you.


Sunday, June 10, 2018

Welcome, You Are Home

In the past week, we as a human race, we as Americans have said good bye to two famous people. Thousands, perhaps millions mourned the loss of the life, the people they were and who they could have become. Those two were the "famous" Americans however I am certain there were tons of other Americans that were valuable, that were loved and were lost to suicide or another disease, mental, physical or even accidental.

All over the world, people are quick to find fault. Myself included. We are quick to point out short comings. We are quick to admonish, judge or exclude for one reason or another. Is that what we want the human race to be? I don't care if you are religious, spiritual or have no faith at all, we are here. We are present. We are valuable.

I return frequently to the fact that my youngest daughter, with her disability has pushed me outside my comfort zone. She has pushed friends aside, and gained us friendships that we never anticipated all because of who she is. She is differently abled. She has a host of disabilities but when I take a moment, stop and look at who she is I see the incredible value in ALL human life.

Yesterday at a fairly "big box store" she found a "beach set up". She stopped in awe of all it had. A beach umbrella, a beach chair, a towel, and even snacks. For nearly 10 minutes she identified all that was available. I was in awe of all she was. Present. Focused. She "swam" on the floor and as she did a man, a bit older than I was with grown children stopped and reminisced about his own parenting time. The gifts of his kids and passed along a great beach tip. As he walked away, I smiled. Seraphina sees the world differently. She has so many diagnosis, she doesn't fit. There is no one "group" she can find and learning the suicide rate of kids with autism spectrum disorder is 28% higher than that of their neurotypical counterparts according to Psychology Today. Knowing that she doesn't fit and observing all that I do, I am often shocked when I am in a group that has differently abled children, parents and families and one tries to ostracize another.

You see, none of us really fit, we are multifaceted complex individuals known as humans but as humans we all have something to offer.

Today in a special needs support group, a woman asked why a certain group posts about another co-morbid diagnosis when the page itself is identified to be that of one particular diagnosis.

To that mom, I would say the following: I get it. Your diagnosis is unique, in fact I have a kiddo with the same diagnosis and its all she has. Yes, it is very different than the diagnosis one of my other kids has which has 8 additional co-morbid diagnosis'. Personally, when I were in your shoes I felt the way you do. Exactly, and I in fact ostracized a number of amazing people for voicing that opinion to others. You see, in any group there are varying differences. Some kids with one diagnosis may present in a completely different way than another. Still, in that group, there may be someone that has something in common with another parent, another child another family. I can guarantee, these "sidebar" posts are NOT intended to lave you out and YES there are a TON of pages that focus specifically on autism but if I can be the lifeline to one parent, one child, one person struggling, allow me to be.

This word is much to scary to go at alone. I will tell you that I am grateful for the words of wisdom I read from all types of parents and those who aren't parents. I take the nourishment of their words, ruminate on it and allow myself to use these amazing pieces of knowledge when I need it, for myself, my husband, my children or even for those I may never meet.

So, my friends, I will tell you I am 100% unlike you. Our journey's though potentially similar have different intersections. We have different paths we choose to take and we may not even all agree. No matter what, when you are with me, if I am taking the time to answer or to be with you, you are are never alone. You are home.

Let us today reach out to all those, let us not ostracize those unlike ourselves and let us embrace our differences for in that embrace we often can find something that gives us support, the support everyone in this world needs.


Thursday, June 7, 2018

My #AutismSucks

So today I got my first "dislike", though I am sure there is a long list of people that "dislike" none have verbally posted anything negative but honestly, its okay. As I grow and realize all that my life has been and perhaps where my life may lead, I realize that those who disagree allow us the opportunity to grow.

Not so long ago I posted a blog and shared it on Twitter. It had that hashtag #AutismSucks. I get it. That can sound harsh but I wanted to explain. Yesterday however I couldn't figure out just how to put my thoughts into words but today, those words came to me as tears flowed while I walked out of my daughter's school.

First and foremost, my daughter, my Seraphina is the GREATEST teacher I have ever met. She not only teaches me, her father and her siblings but I can't begin to count the number of people that tell me just how she has impacted their lives.


Seraphina is smart. She is funny. She is LOVING. She has the ability to light up a room Seraphina is also a challenge. Seraphina is a teacher, a sister, a daughter, a cousin and so much more but part of Seraphina is a neurological disorder called autism. That autism, though not always obvious has changed life for us in ways that I never imagined. I never fathomed. I never understood no matter how understanding I tried to be.



Seraphina is also a challenge. She is not always in control of who she is and some days my eyes burn so terribly because of the tears I have cried because of her and in honor of her. Like today.

Today. Seraphina had been fighting a cold and through the night she thrashed. I woke to feet in my face so many times it seemed that night never happened and as I wiped my sleepy eyes and woke for the day. As I did I contemplated school. Sure, its just a cold, but she's 4, has autism and attends school with kids who have siblings that are immunocompromised...she also doesn't blow her nose so she sucks her snots back up into her head allowing it to pour out of any crevice in her head (i.e. her tear ducts). Though I knew I wanted to attend her big sisters "LEAD" graduation, I also didn't want to impact the teachers and students she encountered. So I decided though I would have to take her with me, I would keep her home and that decision weighed heavily because not only would she miss school but it could impact her one therapy we get outside school each week. The decision was hard but made not for her or me but for those surrounding us.

So as she noshed on protein bites from Tone It Up and Oatmeal complete with the Nemechek Protocol I prepared to take the rest of the brood to school. Life seemed okay, until it wasn't. As we arrived at school, she played a playful game of "hide and seek" with our schools SRO (Security Resource Officer) and I was once again reminded how blessed we are to have this school. I also giggled as she ran open arms to her "TEASHER" Miss Debbie whom she has been with for nearly two years. I realized this school is more than a place for academics, its is family. I watched as these kids, 5th graders excitedly awaited parents arrival and then it happened.

We went in to the auditorium. A DEAR friend (Katie) helped me wrangle my little love as she ran around the room giggling. She danced up to the front of the room hoping to be the center of attention and when I took her to the back, hoping to quietly stand and witness this LEAD Graduation my daughter expected me to be at, my sweet Serrie thrashed. She clawed my face, bit my arm and pulled my hair. I walked out. I talked to a few teachers. I tried to find calmness. As she settled into my shoulder, I thought perhaps I could try again. Then it happened, again. She lost her ability to be present, I watched as her eyes darted, quickly and I knew what was coming.

A meltdown.

I asked a teacher to tell my daughter I was there. I tried to find her hoping I could let her know I made an attempt. The school psychologist stopped me offering to help and the secretary looked as if she might cry knowing the pain I felt. At that moment, tears fell. I walked out and Seraphina looked at me.

"Don't Cry Mommy".

Through tears, I smiled.

"I am sorry Seraphina, I am sad."

"I am sorry Momma".

"I know Seraphina, I know you can't handle it. I am sorry."

Slowly, she slid down my leg, her tiny hand fit into mine. We walked hand and hand to my car and I sobbed. I left.

I left that child who wanted me there. Desperately.

I left that child who wanted me to hear her friends speak. She specifically asked me to hear her friends.

I let her down.

I quietly buckled my daughter into her seat, unaware of how to handle her emotions but knowing it wasn't okay.

My heart broke.

My heart broke for my daughter inside, without a mom to take pictures (thank God for friends).

My heart broke for my daughter in my car as I video blogged on my Facebook Group, and honestly, my heart broke for myself. Missing that moment.

I have never had a "LEAD" Graduate. We didn't have it at our former school and I was looking forward to today. My daughter was looking forward to today. We chose to have me stay home so I could be present in these moments and yet, there I was, missing. I was sitting in a car, wishing, wanting, hoping that this life I was living was different.

I got that picture. The one I wanted to take. From two friends. I am grateful but still, I wish I had been the one there.

So when I say #AutismSucks, I am NOT saying my child sucks or the lessons learned suck, I am saying that the things autism takes from my other children suck. My daughter couldn't control her feelings, her mind, her brain and it was no fault of her own but no matter what, I wasn't there and I feel sad. I feel sad I wasn't there for my child and that feeling, the feeling I had, the feeling my older daughter has, its one that I won't forget, not today, not tomorrow, not in the future and I will hate #Autism for what it robs me of.

So to the person who hates me for the hashtag, I get it. I do. I don't hate what autism has given me, but autism does suck because you see, I want to be the best mom I can for all my kids and lately, autism is sucking all my "momming" out of me and I feel like I am missing the mark, not with my kiddo who has autism, but the kiddos who went before and honestly, that is why in my mind, #AutismSucks.

Tuesday, June 5, 2018

You Don't Need An Award, I See You

There is this little boy. He has turned our world inside out. Not upside down. That is Seraphina's job but still Jude has his own hopes, dreams and his own agenda. Never have I met a more stubborn person than my son and his ability to shoot me down and use his vocal abilities to scare off the nearest crowd is something to be reckoned with. He's never had a "perfect" report card and on occasion has been seen running from school(s)--yes, more than one school noting that its boring and he wants to be with "mommy". He is the epitome of momma's boy and never did I ever think smelly socks, dirty worms and fishing would be my thing.

Enter Jude.

From the moment he arrived, I was awestruck. I knew girls but never had a little boy stolen my heart. Here he was. In his glory. Red hair and rolls for days. He was the most content child I had ever seen. He lived to nurse and sleep. His nickname? Sir Tubington. He was spoiled by all who met him. Why? His rolls were kissable and who can resist the worlds cutest chubster?

Fast forward a few years and he got incredibly challenging. I questioned my parenting. I questioned him and I realized that his unique self was helping me to grow and see the world a little differently. He didn't love sports as I had envisioned yet loved to fish and getting me near a worm wasn't something done without fear. Still, he did it. I did it. For him.

Last year I called on my little anxiety ridden creature to change schools. After his sister was diagnosed with autism, I couldn't make the 30 minute drive at least 3 times a day to the school he called "home" and to the teachers who loved him, completely. I uprooted him, away from his very best friend, the girl he knew as his wife and told him it was time to jump a grade too. This little love, he lost all he knew, and as his mom I questioned why he had such adverse reactions.

This little man who knew only what he had lived was plucked from the life he knew and asked to transition with no emotional support from his overwhelmed mom. He did it, not with grace, more like a bull in a China shop but we are a year past that transition and slowly, I see maturity. I hear stories of his kindness to others and though he does what is expected at school while kicking and screaming he is working every day to become more complacent but not to lose the inner being of who he is.

Recently he asked, why wasn't he ever the student of the month. Part of me knew. He is challenging. Not everyone gets a turn. The first half of the year he spent trying the woman he was placed with. She loved him. She cared for him and today, he loves her. He respects her. Still, there is no award. Not all kid deserve awards but that being said, it doesn't make them lesser beings.

Children are uniquely who they are called to be. We are called to find and identify their unique qualities, embrace them and help them flourish. I am finally getting that with Jude. I may never see him playing quarterback. He will most likely NOT be the leading scorer in basketball. He may in fact be fearful of being perfect but he IS in fact PERFECT. Perfect for HIM. He has been created to be who he is with purpose. He is created to call others to be more tolerant and understanding. He is called to question and challenge and I am certain he is called to do so much more.

He and so many other kids will not see posts on Facebook about their academics, their winning season in sports or the fact that they have become the "Bucket Filler" or "Pawtastic Character of the Week" but they are still valuable. They are still worthy. They are still a gift. Perhaps there is no paper to document or identify their growth but their is growth. Perhaps your child sat next to a child that felt alone. Perhaps your child played with a kid who had no one on the playground. Those actions may not receive extrinsic awards but we as parents and adults are aware. We are aware of your unique qualities and abilities. We love you for who you are and who you may be called to be. We love you for who you are teaching us to be and who we will become because we have had you in your life.

So to the child who will get no trophies this year, I see you. I acknowledge you. To the child who prefers video games to sports, I see you. I acknowledge that you are good and worthy in your ability to see the world through engineering and programming. To the child who gets terrible grades but tries their hardest, I see you. As a mother, I see you. I see your mother beaming with your growth and with her, I beam. Don't ever forget child, that you are worthy and a paper or outward acknowledgement is just that. One day, maybe soon, no one will remember who had an award or why but someone will remember the kindness you extended to them. Your mother will remember the growth you had and for all the kids like my son, a BIG SHOUT out to you for sitting as others get awards, accolades and opportunities. What restraint, what character, what kindness you show as you cheer on your friends as you wish you too were standing at that podium receiving an award that though meaningful does not negate the meaning of who you are.

Sunday, June 3, 2018

Dear Friend, I Understand.

Its the end of the school year and administrators are sitting with teachers working to create the best classes for the coming year. Its no easy task with children who have individual likes and dislikes as well as their own little minds, teachers are called to carefully consider teaching style, classroom make ups an of course those kiddos with extra needs. This year, I sit on the other side of the table and I am the parent who understands my child, with autism may be placed in your class. I have heard a few "friends" of mine have requested they not be with my child or children like mine, and I want you to know, I understand.

Really.

I do.



Friend, I remember being in your shoes, when my first born was placed in the inclusion class. I worried about her. I worried she may say the wrong thing. I worried she may not get the attention she needed. I worried that the child with disabilities may impact my child negatively, and I sat back and watched that year as she lived and learned through being in the that class, that class that had kids with identified needs and children whose needs were identified through the year. I can tell you that she was not the only one who learned, I learned too.

I learned that having a child in an inclusion class CAN and will mean that my child may have to wait a little longer, they may have to progress a little slower and they may struggle with frustration at times but I learned how these lessons can be valuable.

I learned that sometimes I would be in the classroom for parties or to help out (I was the room mom that year) and I may be scared or overwhelmed at times with other children's behaviors or lack of self control but I also learned that it made me a better mother. I learned to have more understanding and empathy for what that parent was going through. I also learned how lucky I was to have a fairly typical child.


My child took away valuable lessons that she has carried with her today. She is often looked to as a partner or a leader because of her ability to work with children who are differently abled and what an honor it is to have a parent of a special needs child email, call or stop me and thank me for her kindness because truly, that first year, that year with the inclusion class is the reason she is who she is today.

Recently I have learned of more than one of my "friends" who don't want their children in inclusion class. Perhaps its for similar reasons that I held in my heart. Perhaps you have your own reasons. Either way, I want you to know I don't judge. I live with my daughter and I know just how hard it is to be with her. I know how scary it is when she's having a difficult melt down and that she can overwhelm other children and adults when she loses self-control, I get it but I do want to tell you a little about her.

Like you carried your child, I carried her, I was blessed to carry her full term. Like you, I rocked her, nursed her and held her close. Like you, I had my own dreams and hopes for her. I had ideas for who she was and what she was going to be. Like you, I imagined that she would be amazing. She would obviously dance at 2, play soccer at 4 and would be smart just like her father. Sadly, my dreams were not realized as easily as I had hoped but what I will also tell you is living the last 4 years with my child has made me a better person than I ever was before her. I have become a better mother, wife and friend. Her struggles and her issues have made me a better daughter, teacher and support. I have become a better coach, I have become a better person, because of her and mostly because of her disability.

I will also tell you about her siblings. They have learned to be selfless-because of her. They have learned not to fear children unlike themselves and how to embrace them. They are the first kids to comfort, console or CHOOSE to be with children with disabilities. I get calls, emails and have face to face conversations with teachers, therapists and parents that thank me and it was nothing I taught them, it was their sister. Those calls, those emails and those conversations are so much more valuable to me than grades on a piece of paper that mean nothing after school concludes and they become the leaders of tomorrow.

So friend, I understand. I understand that if you learn your child has been placed in my daughters class you may be scared or even worse, you may call and ask your child be placed differently. I get it. Its scary. I don't judge you. That being said, I will tell you, if you choose to pull your child from that class, you will be missing out. You will be missing out on your child learning valuable life lessons that will not only impact them during the coming school year but you will be missing out on your child learning valuable lessons that they will carry with them long after we are no longer walking this earth. If I were you, I would take the opportunity that the inclusion class offers. The opportunity to grow, the opportunity to flourish, the opportunity to live a better life for having a disabled child in it.


Still, if you choose that that class is not right for your child you, I understand. I get it. I don't judge but I urge you to take a moment to teach your child compassion, empathy and understanding because you see, school isn't just about books or tests as much as the outside world would like you to believe. School is about growing in knowledge that is both academic and empathetic and what better way to learn than to practice it each day?



The Reason for Sports

In the last couple years, I have had the honor to stand by, work with and coach children from precocious preschoolers to kiddos about to hit middle school. It has spanned four different sports and as I watch and witness, my favorite part of it all is watching the children develop. They develop as athletes, they develop as people and most importantly, they develop as teammates and there are some amazing lessons learned from that experience.

Today I woke up once again to news of parents who are ruining what sports are for children these days. Parents that ridicule, harass and embarrass their children. I will be the first to admit, my awful squeaky voice can be heard across courts and fields but I am working on that (especially when I am not coaching)...often its to push kids in a positive way but sometimes I have to check myself and I listen and realize other parents have to do the same.

I also woke up today and witnessed a picture of a child, a child of a high school classmate comforting his teammate after a hit- sitting by his side, most likely in silence with ice. His presence though not removing the pain was most certainly helping that child to feel comfort. That picture, that act of kindness is what sports is all about. Chances are MOST of our children will NOT be recruited by Big 10 schools an even if they are, chances are their academics will pull more scholarships than the sports they play. Chances are MOST if not ALL of our children will not be watched on TV during the Olympics but chances are that our children will go on to grow up and be adults. What kind of adult do we want them to be? What can childhood sports instill in them to help them be the BEST adults they can be?

Adults will need to be kind, comforting and consoling. They will be adults who will be called to be leaders who are called to be teachers and perhaps one day coaches. Earlier this year I saw a sign that made an impact, in fact the woman I coached with that season took a picture. I can't seem to find it so I created my own.

As we parents go into the summer and perhaps have some travel sports that we are playing or even a new season, like Rugby, let us not forget why we sign our kids up for these sports.  Its not to be a "killer" or a "bulldog" but to be a team player, to be a teammate, to be kind, to play hard, to try to get better on their own path and to learn to be a leader on and off the field. And in case you forget, I made a very simple reminder.


David.

I'm not really sure WHAT to title this blog. A child? A child I won't meet? A child who helped me see my path as to my God giv...