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I talk about Autism, a lot

The Invisible Girl

11/5/2015

12 Comments

 
Picture
Grace was born in the spring. She was our first. The moment she was placed into my arms and I looked into her eyes I finally understood the term 'soul mate'. For this little dark haired baby was surely mine. My heart ached when she was taken from my arms by the nurse and continues to ache to this day when we are not together. She is anxious and kind, timid and loving, sensitive and oh so smart. As she grew she would crush the milestones in the baby books. She spoke so early and so well that her father and I would often be approached by strangers who had overheard her detail her day. "My, she talks so well. How old is she?" We would beam, and answer "just two" and then we would bask in their compliments, all the while, feeling like fantastic parents. She was our star and we held her up to the world so proud and she beamed down on us, just as it should be.

Kate was born in the spring just two years after Grace. When they placed her in my arms I searched in her blue eyes awaiting the connection I had been expecting for nine months. I couldn't find it in her eyes. I looked to my husband and back to my baby. I looked to the doctors and nurses but they didn't seem to notice. She didn't snuggle in and grasp for me like her sister. I could tell she didn't know I was there and I was devasted.. I smiled and said all of the things I was supposed to say but I was terrified because my baby had not connected with me and I didn't know what to do. Soon my husband would return to work and I would be home with my two small children wondering what I had done wrong.. 

In those early weeks I would spend hours staring into Kate's eyes. I haven't admitted that, yet. I thought maybe she was blind, or deaf, or both. Why didn't she look at me? Why didn't she reach for me? 

During these weeks, Grace, our shining star, took a back seat like no other. It would be a seat she would quickly get used to. I had to fix my baby. Grace would be fine with her 'Little People' toys and her board books while I worked to get Kate to notice me. Grace was clever and a good girl. She would be fine if I focused some attention on her sister for awhile.

"There something wrong with Kate." I would say to my husband, with tears in my eyes.

"Don't be ridiculous," he would say :you're just hormonal."

"I'm scared." I would say.

"She is perfect. I promise." He would say.

It would be years before I would know that sentence to be true. Two years in fact until we got her diagnosis of autism and two more before we really wrapped our heads around what that meant for Kate and our family. I would finally find that connection I had longed for when Kate was baby, and those bright blue eyes did not disappoint once I reached her. She is the most loving and wild little spitfire. She loves with all her might and she believes that everyone and everything is amazing. 

What then, of Grace, while we spiralled into despair and fear and finally fierce protection for our child who would always struggle in a world built to overwhelm her? 

Grace would become painfully shy. Her new role as 'autism sibling' would take over. She would grow anxious about many things, with her biggest worries pertaining to her sister and myself. She sits silently at countless specialist appointments twirling her hair as one professional after another says things like: "Developmental Delays" and "Communication Disorder". 

She was there at Kate's first occupational therapy appointment when I cried because the weight of it can hit you at the most inopportune times. 

She was there the many times when Kate lost her words and would bite my cheek, or arm or back to tell me she was angry, confused, and overwhelmed. She was there when I cried then, too. Not because it hurt, though it did, but because it made me so unbearably sad at times. 

I compared the girls at every turn. Have I confessed this yet? I still compare. It one of my worst habits. 

Grace was talking so early, and shows such academic promise.  

Kate confuses words and their meanings and can be aggressive when she is afraid. 

Grace is fearful and cautious and won't step too far from me.

Kate is fearless and strong and won't ever look back.

Grace watches Kate as I do. She watches and wonders and thinks about her even when they are not together.

Sometimes Kate gets so agitated that she gets aggressive and unreasonable. This will sometimes happen in public. This is the quickest way for Grace to go invisible. 

She watches and listens and reaches for my hand every single time and she stays  invisible because she feels we cannot manage much more than what is on our plate.

She stays invisible whenever her sister acts out, which was and can still be so very often. 

She's become the invisible girl for her baby sister and it breaks my aching heart. 

She loves this blog. She is proud of it and proud of her baby sister. We've asked if she would like to be the subject or author of her own blog and she is thinking long and hard about it. She is shy, you see and it's always been easier to let Kate take the attention.

She is still our star, you know. She aces her math tests at school and she talks of becoming a teacher some day. I cannot bear a day without her kisses and hugs and I tell her so every chance I get. 

"I love you, Grace."

"I love you more, Mama."

"Not possible, Baby,"

"I know, Mama."

She is a good friend and fine student and the most lovely little daughter anyone could ever ask for. 

She cries when she thinks someone is embarrassed. She cannot bear it for them. I love her tender heart so much.

She is my best friend, and my greatest comfort. She is my baby and I don't want her to feel invisible anymore. 

12 Comments
Melody Ayer
11/5/2015 04:32:42 pm

This is beautiful. Thank you for sharing it. I have two older daughters whose younger brother has autism. They are all grown now. The girls are 29 and 25. My son is 23. :-)

Reply
Gina Hoefert
11/5/2015 04:36:27 pm

Absolutely beautiful.... thank you for sharing your heart.

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Randall Sandefer link
11/5/2015 04:37:27 pm

God bless you one and all!!! Awesome heart wrenching story,was hard to read because my eye's were leaking all over the place Grace is the BEST big sister I've ever heard about. More love at your house than most of the world

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Emma link
11/5/2015 05:10:28 pm

My goodness this brought tears to my eyes, for so many reasons. Wow, you all fit together as an amazing family xxx

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Liz Vaughn
11/5/2015 05:22:03 pm

I just want to tell you that your writing is so vivid and detailed it's like your telling me this face to face.your ability with words is amazing.your girls are so very lucky to have a strong funny loving ever so honest mommy.

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Faith D
11/5/2015 05:29:50 pm

So strange, we wrote of our big girls at the same time...very different tone, very similar message!

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alexandra link
11/5/2015 05:36:13 pm

that is really sad poor girl

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Marilyn
11/5/2015 06:10:06 pm

Oh my, I feel this so much! My older daughter sounds like she has so much in common with your Grace. And I still compare, too, even though it makes no sense to do so. Thanks for sharing.

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Lana
11/5/2015 08:25:07 pm

The uniqueness of both your girls is amazing!! Grace learned from a very young age compassion & empathy. These will help her to become a wonderful, caring adult. Kate will look up to Grace in awe, just you wait. I often wish my son had an older sibling. But it wasn't meant to be. I think Grace will be a very independant, well adjusted young lady. She may be shy & there is nothing wrong with that. I'd rather have shy than obnoxious!! Lol I just love Grace's picture, she is stunningly beautiful. Shanell I hope you and Grace write a book about your lives & how you lived it with Kate. Grace will have a lot to say I'm sure. It would give others the perspective of a sibling of someone with autism. It could be a great teaching tool for others. Grace is a very in tune with everything young lady. She just knows doesn't she? I know how proud you are of both your girls :) Grace this is your moment - Keep On Shining!! As always another great read mom. Your pride, love, honesty, openness, & warriorishness ( not even sure if that's a word) is so enjoyable. Stay strong & carry on you're doing just great!! :)

Reply
Hannah
11/6/2015 12:34:52 am

Hi that was a beautiful blog. My Louise is the older sibling at 9 and Naomi is 6 and on the spectrum. Louise is the same as grace she's there holds my hand when times are tough and goes straight to naomi as when naomi is distressed she calls out "where's my sisty" Louise has an amazing calming presence with naomi. She is my amazing doll love her so much.

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Deb Evans
11/6/2015 09:21:57 am

It's just the hardest thing.Autism has torn my family apart.Eden hs Autism.He has an older brother and sister and a younger sister.They all had their lives dominated by Eden.It was the only way to cope.Since Eden Ws put in residential at 15.Thn wnt into a unit under Section.Things were just torn in half and thy hav to b able to spread their wings.But Eden and my life stood still for the last 7 yrs.I am still trying to get him back nr home.My area just seem to write him off.He doesn't see them.Thy hav their lives and is 170 miles away.I go every 2 wks.Just a short visit.Its just broken mine and Edens life.

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Carol-Ann
11/6/2015 06:11:08 pm

I am a sibling of a person who is exceptional. Though my brother does not have Autism I know how it feels to be the "good" girl so mom and dad can work with my brother. I can say as a child I struggled with this but as I grew and saw other families, my struggle changed to empathy for my parents. I feel I was blessed to have a family that could be so diverse and inclusive. I think it has made me closer to my parents now that they are aging. I see in your story much of what my mother expressed to me.

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