Ciao

I started this blog a while back after spending a surprising weekend with a bunch of wonderful autism mamas. The majority of them blog, and they encouraged me to start. No expectations. Just put pen to paper (or finger to touchscreen as the case may be) and let things out. See where it might take me.

When I first started this adventure, I had years of bottled up hurt, worry, frustration, and even rage over so many things that had happened in my life. Most especially, I was devastated that my precious little boy was diagnosed with autism.

Time has a way of softening edges and blurring lines. Over the last couple of years, I’ve learned so many things. I’ve learned that autism may pose distinct challenges for my boy, but it will never define him. It isn’t cancer. It isn’t a death sentence. It isn’t anything to fear. I’m so lucky to have this child in my life who has taught and continues to teach me on a daily basis about how wonderful and miraculous life really is. He has taught me to slow down and not just look, but actually SEE the beauty in things that I may have otherwise rushed by. I’ve let go of the anger and the denial and replaced it with something wonderful.

I’ve replaced it with hope.

I wrote the following to the wonderful mamas who inspired me over that wonderful weekend;
“I’ve thought long and hard about what I want to project as I move forward in my life as a person and as a mother to two awesome special needs kiddos with a challenge of my own.
Things are hard.
Life is challenging.
That applies to everyone.
I don’t want to feel the anger anymore. I
certainly don’t want to project it anymore. My first blog name was all about anger and fighting whatever came at me. The second name was pulled out of a hat because I had a creepy stalker. This new name that I’ve chosen feels right.
It’s a new start with a very different perspective. I finally feel like I’ve grown into my skin and it no longer itches or has tags in places it shouldn’t. Both of my babies were born during December snowstorms. I’ve watched them both grow and evolve and blossom in their own special ways.
You have all helped to change my perspective towards so many things for the better, I believe. I will always be thankful for the impact that you have all had on my life. Especially (my dear friend) who started it all.
I hope I can make you proud.”

I’ve chosen to call this post “Ciao” because Italians use it to say hello and goodbye. I believe it’s a perfect ending to this chapter and a wonderful start to the next phase of my life.

I won’t be writing under this name after I publish this post. It’s truly time to move forward. I think perhaps I have three or four followers (thank you, you lone rebels!). If you are interested in following along with me, just send me a message and I’d be happy to let you know where my new landing spot will be.

I wish you well. I certainly wish you hope.

Ciao!

My Baby Turned Eleven

This post is a few weeks late but I couldn’t allow one more day to pass without writing it.
I had never spent a day in the city with my beautiful daughter. Just before her eleventh birthday, I decided the time had come.
I had an appointment scheduled during the week of winter break, a couple of days before her big day. When I asked her if she’d like to join me, she jumped at the chance! “Yes!!! Please, Yes!”.

I had a plan that she knew nothing about.

She, like many girls her age, loves American Girl dolls. She has a couple of them but had never really been to the store. We did a quick pass through on our way to the Radio City Christmas show a few weeks earlier but that was it. I saw the sadness in her face that we weren’t able to spend more than just a few minutes there. The look on her face made my heart ache.

My daughter has been through so much in her short life. She has always been forced to take a back seat to her brother’s needs and never complained. While we can all agree that life isn’t fair to anyone, it’s particularly hard for a little girl who deserves so much more.

While her brother was diagnosed with autism and her toddlerhood revolved around his therapy schedule (some days we had four different therapists in the house to work with him) she went on being the perfect little girl. She was always the helper, the easy child. She did her best to never cause any problems.

I can use that as my excuse to why I didn’t notice when she began to struggle in school but it’s not acceptable to me. There is no excuse. I screwed up big time. My daughter is an avid reader and loves learning. However, despite always coming home with good grades, I consistently heard how “lost” she seemed to be in class during every parent/teacher conference. It wasn’t until the summer between grammar and middle school that I decided to have her evaluated.
She was diagnosed with ADD and eventually auditory processing disorder. She is so incredibly brilliant that those two diagnoses went undetected for so long. The guilt I felt and still feel is tremendous.
The bright spot in this is that the first day we tried medication, she felt completely transformed! The summer assignment that she struggled with for weeks was completed within the hour. Things that were challenging suddenly became clear and focused. She actually thanked me for giving her the medication that I cried over for weeks before finally consenting to it.

Today, my girl is on the honor roll in her school. She is the science leader in her class. Her writing is thoughtful and creative and inspiring. Not even math poses much of a challenge for her anymore. Even if she weren’t experiencing such academic success, I’d be over the moon proud of her just because of the person she is.

That’s why I needed to make her birthday a day she would never forget.

After my appointment was over, we entered the American Girl store and lingered over each doll. We spent time admiring every created scene and all of the accessories they have. She really believed that all she would be getting that day was one of the miniature dolls. She had no idea that I had a different plan. After she found the miniature Addy doll she wanted, I suggested we take a look at the full sized doll. When I picked up the box and placed it in her arms, it was clear that she didn’t understand.
When I smiled and said “Happy Birthday, Angel”, it still didn’t register. In a store full of Veruca Salts running amok demanding everything they saw, my daughter was in a state of disbelief that she was actually getting the doll that she had wished for for months.
Her stunned silence continued as I asked the saleslady to help us find an outfit for Addy as well as a few other accessories and even a stuffed American Girl dog.

The look on her face was priceless.

We left the store with two completely full shopping bags and I don’t think I have ever spent money in a more fulfilling way. It was worth every single penny.

After we boarded the train home, I asked her how she felt. She said that it still felt like a dream and she hoped she wouldn’t wake up.
Naturally, I pinched her to prove it was indeed, reality.

Not yet ready to end our special time, we went to lunch at her favorite pizza place and chatted. She asked me if she really deserved everything she was given. It stung to hear her say that. Even after all she has been through, she still didn’t feel worthy. Though I did my best to assure her that she deserved all of it and more, I still wonder if she believed me. And it still stings when I think about it.

She still sleeps with Addy every night. She has made clothes for her out of felt. She take such wonderful care of her new friend.

I can’t wait to surprise her again. I’ve never known a child more deserving.
Happy birthday to my special angel.

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The Park Bench

Every day while I sit in my car waiting for my daughter to be dismissed, I do my best to avoid looking into the park that is next to her school. I don’t like to watch the perfect little pre-schoolers running and playing in the playground while their mamas sit and chat on a nearby bench. It always looks so easy for them from the outside. So… normal.
I never knew what that felt like. By the time my daughter was old enough to play in the park, I had a demanding newborn to attend to. I don’t remember ever sitting on a park bench calmly watching them, even after they got a bit older. I always maintained eagle eye focus, ready to leap to their aid in a nanosecond. Ever vigilant and awaiting that spark in my son’s eyes that signaled he was about to run out of the playground and into the street. I never had time for easy chit chat with anyone. That’s not a bad thing necessarily, as I find it tedious and painful, but having the option would have been nice. To have had a choice.
I’m angry and sad most the time that none of this is easy. It’s a rare day that I’m not trying to put out a metaphorical fire for one or both of my children. It seems like even when things are sailing along, a torpedo strikes us out of nowhere. I always feel like I’m on high alert and at times, it’s overwhelming.

A week ago, Sunday, my son came to me and said that his mouth was hurting him.
He never complains of pain. Ever.
As all of his baby teeth have needed assistance from the dentist to come out because of their extraordinarily long roots, I’m always looking inside of his mouth. I’ve rarely looked at the base of his gums in the front. When I pulled his bottom lip forward to visualize the source of the pain, I nearly fainted. I was able to see the entire root of his permanent front tooth. The other secondary teeth were pushing it out of his lower jaw. The root of the permanent tooth was barely contained by the thinnest sliver of gum tissue.

I made an emergency appointment with the dentist for the next day. After a brief exam and an X-ray, she knew the problem was too big to manage with just a shot of anesthetic. He needed an oral surgeon to remove two teeth- one on the bottom and one on the top as well.
We went straight to the oral surgeon and scheduled the extractions for the following morning. Thankfully the surgeon allowed me to hold my son on my lap during the procedure. I was able to feel his breathing and watch his heart beat and oxygen saturation on the monitor. My son is such a brave little guy and within minutes, thanks to the IV sedation, both teeth were out.
Unfortunately that wasn’t the end of the story. We needed to take him to an orthodontist the very next day. Three different dentists had previously mentioned that my son would likely need a palate expander to make room for his permanent teeth. The orthodontist we saw disagreed. He also looked like he was about fifteen years old so I’m seeking another opinion. While I surely don’t want to put my son through that torture device, I don’t want him to lose his teeth either. Once again I have to make an awful decision and second, third, and fourth guess myself.

I’m tired. I’m so very tired of making difficult decisions.

If that were the only issue I could focus on, it would be a lot simpler. As life dictates, it’s not. Our boy is also currently finishing up testing with another specialist to find out why he can spell a complicated word, can write that same word, and yet can’t read that word. The doctor believes that he suffered a small stroke during his delivery.

A. Stroke.

We get the results at the end of the week along with a plan to scaffold his learning with additional supports. I don’t have a clue as to what those supports might be. I still haven’t processed the possibility that my perfect little baby quite likely had a stroke caused by an incompetent obstetrician during delivery.

My children are my life. I would walk through a hungry lion’s den on fire for them. I don’t have a single regret about having them. I love them more than I ever thought I could love anyone. They are my reason for living.
Once in a rare while though, when it gets to be so hard and there doesn’t seem to be an end in sight… there isn’t much I wouldn’t give to be one of those mothers on the park bench.
Just for one worry free afternoon.

*** I completely suck because my daughter’s birthday post is still sitting in my draft folder, unfinished. It will be completed shortly. It was too wonderful to not write about (see? I’m not always misery and pain, I promise). ***

Nine

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Yesterday morning, my little dude jumped into my bed and greeted me by accidentally slamming his skull into my nose while I was still asleep, jolting me instantly awake. It was an appropriate metaphor for how he arrived into the world on the same day, nine longshort years ago.

It was a most wonderful ninth birthday. While he still had to attend school, it was far from a regular academic day. The entire third grade was participating in a “Dances of the World” exhibition. Nine years to the day after my baby was born, he was dancing in a show with the entire third grade! Despite missing an entire week of practice due to the flu, he did great! He sang the songs and danced all of his steps in perfect harmony with his classmates. His Daddy and I were so proud.

After the show, all of the parents were invited to a buffet lunch with all of the third graders. It was extremely crowded and very loud so after snatching a few sweets, we headed out into the hallway to sit in a calmer environment. My little pal crawled into my lap to rest. He had definitely earned it. I’m more than happy to have him in my lap any time he wants to be there. I know that the days that he will be able to fit on my lap are numbered and I wish I could freeze time, just for a little while. Here, in my arms, he is safe and protected. It’s calming for both of us.

His dad and I were able to join him when he and his friends headed back to the classroom. We brought cupcakes and sang happy birthday with his friends and wonderful teacher and para.
We watched (from across the room) as the class made special gifts to surprise their families with for Christmas.

When we arrived home it was gift opening time! The Hess helicopter, a Lego set, some books, and the long awaited Nintendo 3DS were waiting for him. His requested “favorite” dinner (a cheese quesadilla) and his favorite ice cream with nine candles in it (he was definitely “caked-out” at this point) finished off the day.

We are so blessed to have this little boy in our lives. He is funny and kind, smart and creative. He loves everyone he meets and charms all he encounters with his toothy smile.

Raising a child with autism comes with some tremendous challenges. Our kids learn and interact differently than typical children but they aren’t any less loved. They aren’t any less miraculous. My little boy danced his heart out on that stage and the thing that stuck out to me the most was how easily he blended in with everyone else. He fit perfectly into place with every other typical third grader.

Today especially, I feel incredibly blessed.

Happy Ninth Birthday, baby! We love you!

An Open Letter To My Child’s School

The following is a copy of the letter I sent to my child’s school this morning (minus identifying details of course).

An Open Letter to the Entire Staff of (my child’s school),

There are many words that one can use today but the word that I choose to use the most right now is thanks.

To all of you who work at (the school), I’ve watched you. I’ve seen you smile at our children. I’ve seen you reassure a child who is sad. I’ve seen you gently guide a child who has gotten into a bit of mischief. I’ve seen you even offer a hug to a distressed child when today’s society dictates distance. It makes you human. It makes you heroes.

I know when I send my child into your building for the majority of his day, that I am sending him off to be with people who love and care for him. I know that every one of you would protect your charges as though they were your own because in so many ways, they are.

Teachers, secretaries, therapists, and school leaders should never have to consider themselves in the role of first responder. And yet in today’s world of disturbed individuals, we all need to be prepared for everything.

Today I say thank you – to every single employee at (the school). Thank you for practicing drills to keep our children safe. Thank you for offering kindness to our children and demonstrating kindness with one another. Thank you for putting our children and their safety first.

Thank you for the peace of mind I have knowing that my child will be as safe as possible in his classroom today because every single one of you makes it so.

With gratitude and respect,

TenaciousCee

Note:
I received the following email from the principal of the school later the same day-

Dear Mrs. —–

Thank you for taking the time to acknowledge my staff. Your letter was beautiful and heartwarming. I had a full faculty conference today after-school and I read your letter aloud to my staff.

Safety and education are our two main responsibilities! As you know, we take both of them extremely seriously.

Thank you!

(name withheld to maintain his privacy)

Catharsis

I’m tired of the bullshit.
I’m tired of the lies.
I’m tired of the phony smiles that come with dagger eyes.

I’m sick of people in our lives
Who try to knock us down.
I wish things could better
But I end up as the clown.

I wanted so much more
For the children that I have.
I wanted unconditional love
To be a healing salve.

I wanted to know laughter,
Happiness, and joy.
But instead we just hear criticism
Tossed upon our boy.

Know that I slay dragons
I will fight you to the death.
I will make this world a better place
Until my dying breath.

You will never be permitted
To cast harsh judgement upon my babies.
For if you do, you must know this-
I shall see you burn in Hades.

You had a choice, you made it.
You only want to see the bad.
I feel only pity towards you.
You knew not what you had.

My babes are light and love and joy
And full of happiness.
You are dark and miserable
And will die of loneliness.

My girl makes this world better
With all the good she has inside.
My boy melts strangers that he meets
With his smile, bright and wide.

Understanding and compassion
Are ideas you just don’t get.
It must be awful to be you
On that, I’d surely bet.

Autism and ADD are not things
That bring us shame.
They are simply only challenges
And we will win this game.

You tell us that you love them
Then you judge behind our backs.
What you fail to understand
Is that I’m made of sharp, brass tacks.

You can no longer hurt me
Long ago you died to me.
I will not let you hurt my kids
You’ve made an enemy.

Our world is so much better
With our children part of it.
You should try to see them as we do
Instead of being full of shit.

The Schools Are Failing Our Kids

As a parent, I’ve watched the NYC public school system change rapidly over the last few years. I’m both saddened and frightened to say that I feel those changes will be detrimental to the majority of today’s students.

Our government is so determined to keep up with the Chinese that we are forgetting that it is just not possible. The change in the school system that includes lesson plans geared towards the top fifteen percent with the hope that the rest will “catch up” is a disgrace. Unlike China, we don’t have the employment opportunities for those who simply cannot keep up in the academic world. We don’t have – nor will we ever again have factories and areas of industry for those who just can’t cut it in school to fall back on for gainful employment. Our labor laws and minimum wage salary have priced us right out of a production industry and there is no going back. Those in Washington who are trying to sell you a different story are LYING to you. Don’t believe them.

So what IS happening inside of our children’s classrooms these days?
Well, for starters, our children are expected to know how to read basic picture books by the end of kindergarten. They will also soon be required to sit for mandatory state testing. Those who cannot keep up will be held back. Kindergarten has always been optional. Now parents are seeking out academic programs for their three year olds in the hope that they can keep up by the time they are five. How wonderful to discover a fear of failing at the tender age of FIVE.

Fiction is also being phased out in favor of non fiction. The theory is that since most of what we read in our adult lives is theoretically non fiction, we no longer need an imagination. Our children will no longer require the creativity inspired by great authors such as William Shakespeare, F. Scott Fitzgerald, J.R.R.Tolkien, Lewis Carroll, and of course Dr. Seuss. We are raising robotic, literal minds now. Check your creativity at the door, please.

What was once ninth grade mathematics is now fourth grade algebra. Buckle your seat belts, parents. You are embarking on Mr. Toad’s wild ride.

So what might happen to our children when faced with insurmountable pressure? Well, we will have to just wait that out but I have a few predictions…

1. Burnout.
Our children will be under so much pressure to succeed that only the most competitive will do well. Many of the rest will find themselves so stressed that by the time they are ready for college, they will be too exhausted to attend. I also fear that the drop out rate will increase as a result.

2. A World With Less Beauty.
How can we ensure the future of such things as visual art, music, dance, theater, and literature when we teach our children that those things are nothing more than extraneous variables?

3. An Expanding Lower Class.
Without extra help and expensive tutoring, many of our children will be lost in the educational cracks. What happens to those kids who can’t succeed in high school and go on to college? They surely won’t be able to qualify for most jobs. Most civil services jobs now require a college degree. How are individuals who struggle with their education supposed to gain employment in civil service? Quite simply, they won’t. Then what?
No cops.
No firemen.
No paramedics.
No transportation.
No sanitation.
No parks.
THAT’S what.

Our education system has been broken for a long time but these new developments have it spiraling downward at warp speed. The control group for this educational experiment is OUR children. As parents, we need to be the change. We need to insist on change. Our children deserve that much. We need our voices to be heard in unison because pressuring our kids like this is not the answer to our economic problems. Our kids deserve to enjoy the process of learning. They should be filling their minds with possibilities and stretching their imaginations. After all, weren’t some of the world’s most innovative discoveries imagined first? What happens to our future when we crush that at such an early age?

I don’t have the answers on how to fix these problems. I have some ideas but it will take more than just my voice to make a change. We need to join together for the sake of our children and their future. I’ve spoken off the record with teachers who agree with me about everything I have posted here. If you agree, start a discussion of your own with other parents. Get more on board with this. We have the power to change things if we come together to make it happen. Let’s make our voices heard so that all of our children will have a bright and successful future.