Friday, July 19, 2019

Always Acceptance. Always.

There is a lot going on in the news and honestly, as of late, politics sickens me. Period. That being said, I think politicians as well as some of us have forgotten how to treat each other. Always. Our world is diverse. Our nation a melting pot and living in it, one must learn to be tolerant if not accepting. Always.

I have said before how Seraphina looks typical. Some have even said she is the most beautiful of my children. They may just be saying that but either way, she truly is a pretty child. My own or not. Often she is dressed well (when she lets me dress her) and sometimes she has her hair up, braided, in bows and she looks just like any other five year old you meet. I have had a conversation with a number of friends about my thought that because of this, she is not given a pass. Ever.

Seraphina sometimes has headphones on, but its rare, unless she's in a space that is overwhelming or someone is vacuuming. So if you see us, my brood and I, out at a store, she's often by my side, holding my hand and toddling along much like all my other children have when they were her age.

Then sometimes, it happens. Something sets her off. Yesterday, it was the fact that at Michael's, there was a Beanie Boo that we had at home in the rack for sale. She was insistent that it was hers and she get it. Luckily I had her in a Target cart buckled or that rack would have been overturned and who knows what would have happened. When Seraphina begins to melt, trying to talk to her can set her off more. So I quietly and firmly said, "its not yours". She escalated but the other kids were in line and I wasn't going to stop them after driving from Flemington to PBurg for their own we waited.

As we did, I watched, the cashier, rolled their eyes, huffed and groaned and glared in our direction. I stood, I took it in. All we, as humans want is to be accepted. We won't like everyone, we wont be like everyone. That being said, we as humans are called to accept others. As they are.

You see, before Seraphina, that paragraph could have been written about me. I have often shared my own personal struggle with accepting others for who they are. I was raised Catholic and although Catholic means "all encompassing", I struggled with placing my own thoughts, feelings and beliefs on others not allowing them to be who they were intended to be. Seraphina changed that for me. I have learned that we as individuals don't always choose who we are, we can't change who we were intended to be but as humans we can support each and every person we meet on their journey.

I stood, unaware as to why Henry couldn't accept that my child, struggling, couldn't be like "typical" five year olds in that moment, even though I was trying to help her understand.

So I did it. For the second time in two days, I advocated, for Seraphina, for other children with extra needs, for adults with differences, for communities that are looked down upon, for those who are in a situation where they could use support in being who they feel they are called to be in life.

I whipped out a card, that I made, it shares my blog, my Facebook Page and the fact that I am an advocate of all with autism and other disabilities. I looked Henry square in the eye, slapped down the card and simply said "Seraphina has autism. I am sorry she interrupted your day, but she doesn't understand and she's doing her best, I am sure you understand being looked down upon, right Henry?"

In the moments since I have accepted that THIS is my daughter, autism and all, I realize that my job isn't just to love her, raise her and help her to succeed its also to raise awareness, support others and remind people that kindness, acceptance and understanding will make the world a better place.

Friday, July 5, 2019

What About When You Are Grown?

Right now, you are cute. People laugh at your antics when you drop your drawers and pee at the pool. When I explain you have special needs and people smile and nod with understanding or at least empathy but as you grow, I see eyes beginning to shift. They are darting away wondering exactly what you are thinking or why you are behaving the way you are?

I want you to know I am doing all I can to help you. I want to teach you, so I bring you where we go, even if it means your siblings have to leave early or that we can't show up to the planned events of the day because you are part of our family, of our life, you are ours. We adore you. Completely, even with the disability that has changed our world in ways we never anticipated.

I am FINALLY at a good spot. You see, its taken me time to get here. Like today, when I heard you open the fridge and no matter how quickly I ran, coffee sloshing about in my cup, you had already haphazardly taken the pie out of the fridge and managed to create an upside down pie like no other. In months past I would have cried. Instead, I snapped a photo, sighed and began the clean up and though you apologized, I am not sure you actually understood.

Or there was yesterday, when you leafed through a Playmobil Pamphlet and insisted you needed the "lego house". You got dressed, got Daddy to do the same and insisted you go out to the "shop" to buy it. Yesterday. We all listened as the following hours you continued to beg for this toy at times screaming, crying and having a fit. Though we told you it was the perfect gift for your birthday, you couldn't comprehend what we were telling you.

Then there was the quick errand dad had you go on. He handed you four pennies, as I rolled change last night and asked you to bring it to me. Uneasy, I listened as you climbed the stairs. I feared you would eat the pennies and our 4th of July would be spent in the ER pumping your stomach but as your dad says, we have to try. When you didn't arrive in what I felt was a reasonable time, I called to you. No answer. Daddy followed you and you smiled as you told us that you put the pennies in the sink and broke the vending machine. Daddy grabbed tools, and I watched you as he took apart the sink to retrieve the money. You didn't understand. You kept apologizing for breaking the vending machine and began to script True and the Rainbow Kingdom. As you apologized you continued to lament the fact that you "keep messing up". My heart began to break as I knew that you didn't really understand what we were expecting of you.

As I continued to roll coins, I turned inward, worrying about what will happen when you are grown. You see, today, I got a glimpse of what may come if I cannot spread awareness about neurodiversity and for us, personally, autism.

Today we visited the town pool. Usually we know a number of people but the holiday had families in town hitting their typical jaunts, the parade, the fireworks and upon entering the pool it was immediately obvious there were at least two older individuals with autism, one was immediately drawn to our family. As she tried to communicate with us, our family welcomed her. I headed towards mom sharing that yes, we too live with autism and I got it. As her daughter, nearly my age began to hug you, she pushed your head under water and her mom nearly had a heart attack about to jump in the pool completely clothed. As I hoisted you out of the water, she apologized. I got it, but others didn't.

While you drew me away, I watched as this same person went to others and began to try and engage. The answer was simple. No. No one wanted to accept her and welcome her. Certainly, it can be an experience that calls us to be drawn out of our comfort zone to accept someone so different but it can make her day and allow her to live her best life, even if its just a few minutes of our time.

I couldn't shake the way I felt as I watched people trying to get away and I began to lament your future if I cannot make a difference, for you, for her, for others. You see, autism can be seen as "cute" when you are little but as you grow autism won't go away. Those tantrums that I can currently hold you through may destroy me. The meltdowns will become more obvious and your inability to cope with stimuli will be what holds us back, though we will always try. Perhaps, you may be able to deal with challenges more easily but perhaps you won't. Perhaps, like this woman people will scatter, they will be drawn away, afraid of what they don't know but if they don't take the time, they won't learn the obstacles you have overcome to live life in a world that isn't readily created for you.

So today, I am sad, I am worried. I am fearful. I am worried about what will happen when you are grown, but as I promise today, I will begin to look at ways I can continue to spread awareness, to help you and to help others like you. You see, sweet little one, I can't tell you what will happen when you are grown but I can tell you that you that I am here. I am going to work to make others see you, see your strengths, see how you get past obstacles, see how you have grown our family, in ways we could have never expected. You see sweet girl, while I am fearful about the future, I believe that you are the reason I am here. You are the purpose God planned for me, and for that, I am grateful. Until my last breath, I am yours.

Choose To Act

Yesterday my daughter had surgery. It wasn't major but she was fully sedated. Today as I carried her out of mass kicking me and pulling ...