An Open letter to my Autistic son on his 3rd Birthday

Dear my sweet busy bumble B,

I can’t believe another year has passed. Really, I just can’t believe it. Now looking back, almost all the journals I’ve written for you this year start out saying just that and how busy we’ve been. Things just seem to be happening all so quickly for us. This year also contained so much for us. So many…changes. We both got our diagnoses (you with your autism and epilepsy and me with my narcolepsy). While knowing this has helped us to better our lives we of all people should especially remember to be kind to those we meet because every one really is fighting a battle of some sort, whether it be with their health or something else. I know things have not been easy for you. I feel like I haven’t been the best mom because I was often too busy thinking and viewing our situation from my own perspective that I rarely look at things from yours. I wish I had more energy but I need to remember to prioritize to get more time with you. That’s why this year I will be practicing more unplugged parenting. And when things do go wrong, when you do act differently or have a melt down, and people “tisk” me and make comments I’m just going to let it slide right off my back, because ultimately that stuff really is about as important as I let it be.

Be who you are and say what YOU feel because those who mind don't matter and those who matter don't mind. Theodor S. Geisel a.k. Dr. Seuss
What a difference a year makes

What a difference a year makes

As I was making your special birthday French toast this morning I was thinking about the word “autism”. I realized how much I hate they way people seem to use it with such a negative connotation. And how over the last year we’ve had people we know tell us not to label you, or that you don’t ”look” like you have autism, or a ton of other advise that is usually meant to be a sort of positive pep talk. It is what it is. And it’s not necessarily a bad thing.

 

3 years ago today, late in the evening I was feeling much like I am now. Emotionally and physically worn out. But the moment I first saw you, my very first thoughts were “My whole world is different now and you’ve changed everything the moment you arrived”. And the truth is, you did. You see, you changed me inside and out, and I was all to happy to experience it. Then year 1 passed. Your birthday was literally a circus and we jet set off to the good ole’ US of A. Everything seemed so picturesque when I look back. You were walking everywhere strutting your stuff in your first pair of walking shoes, and then you got that cold, which led to that fever, which led to the emergency room. 2 injections and a day later you had utterly changed and the little boy I thought I knew so well just didn’t seem there anymore. By birthday number 2 you had gone almost a whole year with out a word. No baby babble, “no mama”, “no papa”. We suspected something was off after returning home and had been diving into the system to get you checked out. We had read up on the diagnosis that you may be autistic and there were so many similarities that it made sense. And then just 2 weeks before your birthday you started counting. Counting out loud to 20. Counting everything, steps, blocks, chopsticks. You still weren’t eating normally or playing with your toys normally but change was a foot and that felt good.

 

And now you are 3. And you are uniquely you. You are bright, funny, and sweet. You are blonde, you have blue eyes, and you are autistic and an epileptic. You have likes and you have dislikes. You have high points and you have struggles. You are finding your own way. You like classical music, shapes and can read more than 150 words. You display some signs of echolia and can repeat back a whole television show. We don’t get to have silly massive conversations like I played out in my head before you were born. As a matter of a fact not very much has played out like I thought, but I of all people should know how life can go unexpected.

Today you are YOU, that is truer than true! There is no one alive more youer than you! Dr. Seuss

I see so many Auti parents using the anecdote from “Welcome to Holland“. It makes so much sense for parents of disabled children to relate to this. Things for us are such a struggle, and yes, your autism can be some what disabling in areas of your life at times, but I’m not sure if I can call it ”your disability”. I can relate all to well to “welcome to Holland” because my life is literally the analogy! I honestly hated Amsterdam when I first came. It was cold, and sometimes unfriendly, and difficult because it was full of change for me. I couldn’t understand what people were saying and didn’t always understand the cultural rules. I thought maybe I had made a mistake in being here. But I stuck it out, and for all the things I disliked about it, I now find twice the amount of things I do love about it. For all the grey days the sunny ones on a bike here are worth it. The people and our friends have a richness to them that can be determined in money and the creative vibe here is enough to light up the whole city! It’s the place for me, where I belonged all along.

 

I know the word Autism is supposed to mean something about “auto” and “into one’s self”. That could be used very much to describe you at times although I don’t think you get a choice in the matter. But when I hear the word “autism” I instantly think of the word “optimism”. And when I think of you, the word in itself is “Awe-tism,” because every day I am in awe of you. Even those really hard, no good, grey, frustrating rough days when nothing seems to go “right” or as planned. We celebrate every little milestone because you struggled and fought to get there. Most of the negative things are a blur but I remember with exact clarity the 3 times you’ve said “Mommy” or the moment you first discovered the moon. You make me smile and laugh every day. I wouldn’t change a thing about you and our crazy little quirky family. Because just like my Welcome to Holland, I believe all our struggles will be worth it one day.

 

 

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