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). ***