Learn to bend!

My daughter is about to be 12. In 19 short days she will be in her last preteen year. She is beautiful, smart, lives in her own world that we proudly insert ourselves in everyday and she also has autism. Severe, non-verbal, complicated autism. And this world we live in is not designed for her.

We have to make constant alterations to the environment around us to make it tolerable for my girl and her needs. But unfortunately the environment and the people in it, don’t always want to bend.

The older Sloane gets, the more obvious the judgement of the world around us becomes.

You see my girl might almost be 12, but some of her needs and wants are those of a much younger little girl.

These things that she loves soothe her. They calm her down. But they also bring her judgement.

But they make my girl feel at peace in a world that gives her so little. So I challenge you to alter your perspective, withhold your judgment and your transparent facial expressions towards others like my girl.

My girl’s mind sometimes needs the compassion and wants of a toddler. And that is okay.

My girl likes soft words, baby talk if you will, it puts a huge smile on her face. Which her smile could cure so much pain!

My girl likes a bottle of warm milk to ease her stress, her meltdowns and sensory overload. Yes, a bottle.

My girl likes to sit in her Daddy’s lap like she is a tiny little 2 year old girl and get hugs and tickles.

My girl loves to swing without a care in the world.

My girl loves to listen to Baby Einstein and any baby music toy that you can find. She drowns out the world and hums into hers.

My girl used to love a pacifier to soothe her when she was upset. I can recall so many looks and stares. She made the decision she didn’t want it anymore.

My girl has had the hardest time with potty training. She still wears a diaper. We will get there one day.

And in my eyes, all these things, and so many more, they are okay.

My girl’s life does not always have easy, it comes with pain, and it comes with hard. She has little control of so many things and very little independence in this unforgiving world.

So as her mother, her biggest fan, I chose to let her keep some of the things that may seem inappropriate for a 12 year old to you, but to me these things bring my girl happy and ease. They bring her joy, and they put that cure all smile on her face. And I cannot and will not deny her of that just so you can control your stares and your judgement. I will not alter her happy to fit in a world that rarely bends for her.

So please learn to bend, withhold your judgement and think of my girl.

Lots of love,

Shelley

6 Comments

  1. Beautiful post Shelley. I was friends with your beautiful Mom in junior high. I now work at Arkansas Children’s Hospital and am a Molecular Genetics Specialist. I work in a lab that extracts DNA and performs genetic testing. It’s so good to hear from the family side of living life with genetic disorders. Sloane is incredibly blessed to have the love and support you obviously have and give to her. You rock!!!

    Liked by 1 person

  2. Hi Shelly, this story just touches my heart! Don’t let others change your thoughts about your beautiful daughter, don’t rush anything, they grow up too fast anyway. We should all learn to enjoy each other exactly where we are. Nobody knows what’s happening with someone else! Myself, I say take the attitude, I don’t care, she is my only concern! Your an amazing Mom. I pray God shows you daily blessings. ❤️❤️

    Liked by 1 person

  3. Shelly and JT,
    When I look at your pictures I see the cutest little family. I see two adorable kids. I see a daughter growing and becoming a gorgeous young woman with that beautiful mane and a sweet little boy with a mischievous twinkle in his eye. I see parents who have the most amazing look of love on their faces for their children and each other. So, if someone gives you a weird look in public I think they just don’t understand what love looks like and are confused. Don’t let them upset you. View them with pity; they’re the ones missing out. They’re the ones who don’t get to snuggle with your sweet Sloan; to celebrate her success, to comfort her in the dark. Most likely they’ll never know that depth of love and commitment. As I watch your family grow I am awe of all four of you. Enjoy the ride! I say this as someone with a disability who got lots of stares as a kid that hurt me to the core; of schoolmates not understanding and saying mean things and their parents who didn’t understand how to teach them about the differences in all of our abilities. As an ‘old’ adult I learned to love and accept myself and finally learned to be ok. Keep your head up and keep moving forward with your beautiful family. You guys rock! ♥️

    Liked by 1 person

  4. My Grandaughter my son. My daughter n law My grandson. I’m so proud of them all. I don’t walk in their shoes, I don’t live in their daily life. But I will tell u u I am behind them. 100%. My 4 year grandson knows when his sissy is upset. He will tell you sissy’s upset it’s ok. He loves her unconditionally, so why can’t You? If you don’t know or understand it then I beg you not to judge because Sloanes kisses are The Best kisses in the world

    Liked by 1 person

  5. your daughter and my son were born a day apart 🙂 she’s beautiful, you are so right to let her keep her comforts, you don’t have to explain anything to anyone.

    Liked by 1 person

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