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“Mom, I changed my mind…” Just the fact that my six year old daughter can speak those words nearly brings me to tears. I find myself near tears a lot lately because Jacquelyn is becoming more typical and less special needs. She used to “make up her mind” in a nearly obsessive compulsive way. There could be no deviation from a plan without a major meltdown or anxiety-ridden tirade on her part. There was a time when every day with Jacquelyn was exhausting and miserable. Life isn’t like that anymore. I guess I should start at the beginning…

She was a beautiful baby with porcelain skin and strawberry hair. She looked like a china doll, but she quickly became a bull in a china shop. I bonded with her the moment she was handed to me, and I knew by the time she was six weeks old that she was different.

I began to describe her almost right away as “hypersensitive“. She could hear sounds that were barely audible to others. She couldn’t stand being confined in a car seat, and cried every time our car changed speeds or was on uneven terrain. Obviously, that means she screamed most of the time we were in the car. She didn’t like to be touched but she wanted to be held constantly. She screamed if she couldn’t see my face. She barely slept. Her stranger anxiety began at nine weeks old, rather than the normal nine months. At her nine week appointment, the pediatrician didn’t know what to make of it when she began screaming as soon as she was touched. I had to keep lights low, white noise machines on, and I couldn’t shut doors or cabinets in a normal fashion. She could not stand the sound of the sprayer at the sink. If I needed to rinse off a dish, she would scrape the sides of her face and ears while screaming. She began to hold her ears with her tiny fingers most of the day. She held them so tightly, she broke the skin behind her ears and maintained open sores.

Her stranger anxiety seemed to increase with age. If we were in a parking lot in the car and a person walked by, she would start screaming. If we were in the pediatrician’s office waiting on the doctor and she heard a voice outside the examination room, she would cry. She would dig her tiny fingers and toes into my skin from the anxiety and leave me bruised. But there were times, if I had her home alone and everything was quiet, that she could play, giggle, and interact with me in a typical way. She was meeting or exceeding all her milestones. Her pediatrician asked some pointed questions about autism, I quickly responded that she wasn’t autistic.

As a toddler, Jacquelyn began to exhibit disturbing behaviors. By the time she was 12 months old, she was running the show. Every morning was a choreographed “dance” where my every move had to be in the right order or she would panic. She wanted yogurt every morning, which wasn’t unusual. The weird part was that she wanted white yogurt only, creamy (not whipped or runny), fed with a blue spoon. The yogurt had to be retrieved from the refrigerator first, then the spoon. If I didn’t have the right spoon clean, or if I grabbed the spoon first without thinking, the screaming would begin. The yogurt dance went on for 14 months, and I have permanent hearing damage and tinnitus from her high pitched screams.

It wasn’t long before she was lining up toys over and over again, recognizing written words, obsessing about the number 10, the color blue, and circles – the perfect shape! Blue 10s were the pinnacle of all things holy for Jacquelyn. Once I stopped by a hardware store when she was nearing two years old. She began to clap and celebrate when she realized we were going through check out lane 10. The number 10 on the sign was blue… definitely not typical toddler behavior. Some of these behaviors were certainly autistic-like but I struggled with how to describe her behaviors to others and to accept that she may be a special needs child. Her second birthday was fast approaching, and so was my great epiphany. To be continued…

Read Part 2 of Jacquelyn’s Story here.

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  1. shari

    This is so great to see. Sensory issues are rarely recognized and other mothers always think we are coddling or letting our kids ‘get away with’ being ‘difficult’ My daughter went through very similar things and at 7 months when I went to the pediatrician asking if my child could be bi-polar we knew something was different. We are also (at age 4) finally returning to ‘typical’ after a year of OT and psychology sessions. My daughter is amazing, including her sensory issues, and i loved reading this. Thank you :)

  2. Margo

    Oh Jennifer! Thank you so much for sharing your girlie’s story. These children of ours are truly amazing. Amazing and shocking and difficult and lovely and sad and happy and the whole spectrum of emotions. But they are OURS and we are theirs….to love and figure out and hopefully laugh too.
    Thank you for reading my blog and leaving a comment. Feedback and comments from others really help on those days when everything is a struggle or when we as parents question ourselves, our abilities…even our sanity!:)
    I’m looking forward to reading more and learning more about Jacquelyn.
    Enjoy your weekend!
    M

  3. Laura

    Your daughter and mine sound like twins separated at birth in so many ways. I can’t wait to read more of your story and hear how things are going now for you and her both.

  4. Brandy Warlick

    Wow Jennifer! What an inspirational story this is. I already have more respect for the meaning of patience. I can’t wait to read about more of your journey. Please let me know when you post more.

  5. Mandy

    Jen, Thank you for sharing yours and your beautiful daughter Jacquelyn’s story. I can not imagine the everyday struggles the two of you have been through. This is such an honest eye opening story. I am looking forward to the rest. I want to hear how far you and Jacquelyn have come! Best wishes. Mandy

  6. Karen Doster

    wow Jennifer girl how in the world did you not go insain? I sit and think about how hard it was just when my kids were babies and they were both health, I can’t even image what it would be like with autism. Girl I really hope you had your husbands family an friends to help you go through this!!
    Thanks for sharing!! Can’t wait to read more!!
    Karen Doster
    (friend of Candy Philbeck)

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