J-Bear and Me

learning to navigate the world, j-bear style

Oh, my dear boy.

Dear baby bear,

Today we sat through a far more brief appointment at the Center for Special Needs at Floating Hospital for Children in Boston. Today, they told us the particulars of what, where, when and how about you.

You are as of today diagnosed with autistic disorder. This is ‘classic’ autism. 

There is so much in the report these wonderful clinicians gave us that both gives me hope and breaks my heart. It hurts me to see words that, down the road, could be so painful for you to read about yourself. It hurts me to envision the challenges you are going to face. It heartens me to realize how far you’ve come and how well you’re cutting your own beautiful path. When you are compared to your neurotypical peers, you are roughly a year behind in social and communicative development. When you are compared to your own progress in this past year, you are amazing. 

… And we’re not stopping.

Clinicians who see you only briefly get but a snapshot of who you are. A lot of what they saw is very, very you and yet they do not get to see the side of you enjoyed by those who love you every single day. That’s a gift you save for us and a gift we want to open, slowly and gently, for the entire world to share in. You are inventive, dogged, determined, silly, joyful and above all so very, very loving. This is who you are and who I will do my best to always allow you to be. 

This diagnosis won’t diminish you. It’s going to be part of that which hones all of us, side by side, and part of that which makes you so utterly unique and amazing. 

The future is scary. You will be 3 this coming June and it saddens and scares me to think of you spending full days at school almost the whole year ’round. I ache to think how much I just want you to be a free spirited little boy, playing outside all summer and being just full of excitement and exhuberance… but we will find a way to have that AND have your very specific needs met. Your learning and growing will be fun even if at times it is hard. We have been so very blessed so far to have wonderful people working with you, people who bring light, laughter and energy to their sessions with you and make such hard work seem so much like play. It’s my job to make sure you always have people like them. 

You’re going to be a grown person one day and look back to read these things just to say “ma, you ramble”. And all I’ll say as I gnash my gums is “duh”. 

I ramble because I love you. I ramble because my gosh little boy, such hopes I have for your future. You don’t need to be president or win a Nobel Prize, though those things would be cool. My greatest wish for you is that you are a happy, secure, confident adult pursuing that which brings him the greatest peace and joy.

Just don’t make it puppy sacrifices or some such, okay? I might have to object.

I love you my little monster,

Mama.

Image

j-bear, 10/2011, visitor’s dugout at Fenway Park after throwing gluten free cookies in the outfield. sorry, grounds crew. 

2 Comments

  1. My prayers and best wishes to your family. It looks like there is so much more help now than when my son was growing up. It took us forever to get the right diagnosis. So, there is alot to be thankful for, and the “what ifs” will always be there. But God is there, with you and there have been so many times, when God had his perfect timing. I will always have sadness that my son was not “normal” but he has taught our family so much about life and how to be strong in the storm. And there are those moments that take your breath away. God bless you and stay strong.

    • Thank you for your kind comment and your prayers. There’s a lot of resources out there now, yes, it’s a lot of work to find some of them and you have to be very dogged to get the assistance in some cases but if a fight is what it takes, a fight is what it takes. I wish you all the best for you and your son!

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