She Saw Things » Real Life. Crazy Love.

Wrinkle Fingers

In case you don’t know, my son is on the Autism Spectrum. The part of the vast, expansive spectrum that includes significant language delays, executive function challenges that manifest in a lack of impulse control, extreme bouts of anxiety, sensory processing difficulties, and global developmental delays. Please don’t feel sorry for him or for us. He’s amazing! And parenting him is the richest experience of my life, teaching me things about transparency, compassion, patience, acceptance, and LOVE that I would have never experienced had I not been honored with the job of being his Mother. And as true as that is, it is also truth when I tell you that some days are  REALLY HARD. Caring for a human being who requires 100% hypervigilant supervision and attention is an all consuming, often times exhausting position to be in. One that you really can’t wrap your head around unless you’ve lived it. We do our very best figuring out, day by day hour by hour what is best for Sam, his older sister and our family… we have custom designed our life so that that kind of creativity and flexibility is possible.

When you are Sam, you are sometimes thrown for a loop by things like getting out of the bath and finding your fingers and toes all pruney. Its upsetting and you might cry and wail and say you’re going to cut off the wrinkly parts of your body. Its pretty hard to feel uncomfortable in your skin and not have a grasp on the concept of time and not trust that your fingers and toes will be back to normal in a short bit. And if you’re lucky you have a Dad who will help talk you through it and eventually make you laugh and know that the world is an alright place to be.

 

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  • Katy TuttleAugust 4, 2013 - 7:35 pm

    you have quite the team… your challenges may be more in numbers, but your gifts both received and given are more than one could ever dream of… you are a love. and I feel lucky to (internet) know you. for realz.

  • Sherri DavisAugust 4, 2013 - 7:36 pm

    I love the way you have captured all of it so honestly. I completely understand what is going on in every one of those images. My heart goes out to all of you. He is so lucky to have two such loving and understanding parents.

  • Lili LoveAugust 4, 2013 - 8:29 pm

    these are wonderful and your family are wonderful. and what a gift you and your husband created in this moment. thank you for sharing this small but precious story.

  • Tara Pollard PakostaAugust 4, 2013 - 8:34 pm

    so sweet and special photos.

  • Jen Long LucasAugust 4, 2013 - 9:02 pm

    I felt it all here. <3

  • Kate DavisAugust 4, 2013 - 9:30 pm

    Thanks Jen. I love this. My nephew is on the spectrum and I love your blog.

  • Amanda O'DonoughueAugust 4, 2013 - 11:42 pm

    this. I just want to hug you and your husband for sharing him in his world with us. feeling so blessed to see his little fingers. Your images are so strong and beautiful just like your family.

  • Dina Divya ZuccaroAugust 5, 2013 - 2:26 am

    Gorgeous transition! What a beautiful thing to have seen through your words, photos, and heart. Thank you.

  • MeganAugust 9, 2013 - 4:43 pm

    I love this blog post. Thank you so much for sharing.

  • Efi panagoulaAugust 14, 2013 - 5:05 pm

    You have created one of the most treasured memories and passing along this gift this boy has, his family… Love every single one of them….

  • MichelleAugust 14, 2013 - 11:12 pm

    Oh do I understand this so so much.

    It’s an intense love and at night I’m tired.

    Beautiful images.

  • Sara KellyAugust 16, 2013 - 2:28 am

    These are amazing. Thank you for sharing them with the world.

  • Nina TantzenNovember 6, 2013 - 1:52 am

    beautiful! thanks for sharing these special photos!

  • Carrie ChengNovember 17, 2013 - 9:19 am

    Wow. I truly know very little about autism. Thank you for sharing this real life perspective on it in such a beautiful way. You must be such a strong person.

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