A very bright star

autism She traces the words on my coffee cup over an over, until I’m certain that she’s going to wear a hole in it.  The mug is a “Dear God” mug that said “Dear God if I were a star I’d like to be a very bright star”

“Momma, if I were a star, I would want to be the very brightest one God made.”

My eyes water over and I hug her close to me and murmer quietly “You already are honey. You are already the brightest star.”

It started when she was an infant. I’d hold her to nurse and she’d push away until she was barely hanging on. Or she’d snuggle in so closely that I was certain she was trying to crawl into my skin. We had to swaddle her tightly even after she was walking. And after she was mobile, she’d push me off the couch and hang upside down over my shoulder to nurse, twisting around to get into a position she’d find comfortable. 

Airplanes would make her run in the door screaming that it was too loud. The vacuum cleaner would reduce her to a quivering mass, crying and huddling under a blanket in her bed. When she was 3, she started awakening at night, screaming that the beavers were eating her brain. It terrified us as parents, because we didn’t understand what was going on. The waking grew more violent, now with ducks pecking her brain and beating her with their wings, and the beavers beating her with their tails. It finally occurred to us, after she said she had Christmas in her eyes and then the beavers came, that she had migraine headaches. We took her to the pediatrician, who put her immediately on a medication to ease the pain. We battled with him, because we wanted to know why she had them. He refused to run any tests, telling us that “migraines just happen”. That wasn’t good enough for us. We found a new pediatrician who agreed that we needed to get to the bottom of the pain. Eventually, we discovered that she was tremendously far sighted and her eyes were trying to cross.  I still feel like a heel when I help her clean her 1/8 inch thick glasses today.

When she was 4, we went into a Walmart. The loudspeaker blared and she had what we call a melt down. She just couldn’t deal with the noise. A stranger stopped and told me that I should “deal with my out of control child”. I won’t repeat when I told her. It wasn’t very nice.

How DO you deal with a child that loses it for no obvious reason? She was never deliberately bad, just went ballistic at the silliest things. A rock in her sock-yet when we went searching, there was nothing there but a speck of sand. A loud noise. Or those dreaded days when she was just WILD for no reason. The days when she’d stumble on nothing and scream as if she’d been cut, or get a huge cut and watch the blood ooze with no reaction at all. Biting her shirts, breaking crayons while she colored, hanging over the edge of the couch(I KNEW we were in for a bad day when she did that one!)

When she was 5, we had her evaluated for speech problems. I’d hoped she’d just “grow out of it”, but they recommended we visit Stride Learning Centers. And she met the most wonderful speech therapist there. We spent a week going through paperwork while she played games to test and evaluate her level of need. One afternoon, she discovered a sit and spin. She flung herself on it with joy and started spinning. After 15 minutes, I thought *I* was going to throw up from being dizzy just watching her. She kept going. The therapist watched her closely and called her over. She stood and walked a straight line. I was stunned.

The next afternoon, she found a skateboard and a ramp that started it’s incline 10 feet off the ground(why they had that thing there I’ll never know) She raced to the top of the platform and hollered “Watch me go Momma!” and leapt to her feet on that board. The therapist and I grabbed her at the bottom before she could whiz across the room to slam into a wall. The therapist turned to me and asked “Is she always this reckless?” I nodded my head, still trying to slow my wildly beating heart. She gestured for me to wait a minute and left the room. When she returned, she had a stack of paperwork. She asked me to fill it out.

I started checking things off, rating the different levels of things they were asking…things like :

__ becomes fearful, anxious or aggressive with light or unexpected touch

__ as an infant, did/does not like to be held or cuddled; may arch back, cry, and pull away

__ appears fearful of, or avoids standing in close proximity to other people or peers (especially in lines)

__ becomes frightened when touched from behind or by someone/something they can not see (such as under a blanket)

__ complains about having hair brushed; may be very picky about using a particular brush

__ bothered by rough bed sheets (i.e., if old and “bumpy”)

__ avoids group situations for fear of the unexpected touch

__ resists friendly or affectionate touch from anyone besides parents or siblings (and sometimes them too!)

__ dislikes kisses, will “wipe off” place where kissed

__ prefers hugs

__ a raindrop, water from the shower, or wind blowing on the skin may feel like torture and produce adverse and avoidance reactions

__ may overreact to minor cuts, scrapes, and or bug bites

__ avoids touching certain textures of material (blankets, rugs, stuffed animals)

__ refuses to wear new or stiff clothes, clothes with rough textures, turtlenecks, jeans, hats, or belts, etc.

__ avoids using hands for play

__ avoids/dislikes/aversive to “messy play”, i.e., sand, mud, water, glue, glitter, playdoh, slime, shaving cream/funny foam etc.

__ will be distressed by dirty hands and want to wipe or wash them frequently

__ excessively ticklish

__ distressed by seams in socks and may refuse to wear them

__ distressed by clothes rubbing on skin; may want to wear shorts and short sleeves year round, toddlers may prefer to be naked and pull diapers and clothes off constantly

__ or, may want to wear long sleeve shirts and long pants year round to avoid having skin exposed

__ distressed about having face washed

__ distressed about having hair, toenails, or fingernails cut

__ resists brushing teeth and is extremely fearful of the dentist

__ is a picky eater, only eating certain tastes and textures; mixed textures tend to be avoided as well as hot or cold foods; resists trying new foods

__ may refuse to walk barefoot on grass or sand

__ may walk on toes only

__ may crave touch, needs to touch everything and everyone

__ is not aware of being touched/bumped unless done with extreme force or intensity

__ is not bothered by injuries, like cuts and bruises, and shows no distress with shots (may even say they love getting shots!)

__ may not be aware that hands or face are dirty or feel his/her nose running

__ may be self-abusive; pinching, biting, or banging his own head

__ mouths objects excessively

__ frequently hurts other children or pets while playing

__ repeatedly touches surfaces or objects that are soothing (i.e., blanket)

__ seeks out surfaces and textures that provide strong tactile feedback

__ thoroughly enjoys and seeks out messy play

__ craves vibrating or strong sensory input

__ has a preference and craving for excessively spicy, sweet, sour, or salty foods

I was in a daze. Many of them were “Sometimes”, such as the idea of being in severe pain one injury when it was really nothing, or not feeling any pain at all when she hit her head on a door knob. Baths were insane. Water in her face was the worst thing that could happen. She hugged as if there were no tomorrow one minute and then screamed about being touched at all. They were all either 1 for completely avoids or 5 for seeks out this activity.

When I was done, the therapist read through the list and said “I think your daughter has sensory processing disorder.”

Oh. Okay. Wait, WHAT? She has what?

The therapist started to try and explain it to me and I stopped her. I asked her if she had something I could read. I do better if I can read it for myself. She handed me a book called The Out of Sync Child by a woman named Carol Stock Kranowitz and a book called Sensational Kids: Hope and Help for Children with Sensory Processing Disorder by Lucy Miller and Doris Fuller. I took them home and started reading. Things started to click in my head as I read them, but when I read Sensational Kids, I was screaming for my husband to come and read. The way they described SPD was exactly what we were dealing with. I called to schedule an appointment with the pediatrician and the nurse wanted to know what her “symptoms” were, why we needed the appointment. I tried to explain and she insisted we’d be put with the ADHD doctor. I was frantic. I didnt’ want my child on medications. I wanted answers, solutions, strategies. Nowhere in these books had anyone mentioned medication-but occupational therapy. We fought to get with the same doctor who had helped us figure out the migraine issue 2 years before.

She saw our daughter and after evaluating our daughter diagnosed her with sensory processing disorder, and told us that there was therapy that could help her. We started working with the same people at Stride. They helped us put together a sensory diet for her. We built a crash pad by buying a duvet cover and stuffing it full of pillows we begged from church friends and family. We bought her a mini exercise trampoline, and spent an inordinate amount of money with a company called Abilitations on squeezy balls that vibrated, had texture, or lit up. Squishy things, smooth things, scratchy things. We would start her mornign with “hard hugs”, hugs that make most children cry out in pain, but she craved. She would fling herself from the back of the couch into her crash pad with glee, and then go stand on her head in the corner, or lay with her feet over the back of the couch while she watched television.

Eventually, she was able to ask us for what she needed, right down to foods that fit her textural needs better. It took a long time for her to be able to eat tomatoes, but now she can eat raw tomatoes once in awhile without too much stress. She still avoids milk(it feels funny, she says) Crunchy foods are her delight in life. She stands on her head to read her school books, and bounces on a ball when she does math. She has a weighted blanket named “Princess” and a weighted snake for her neck named “Happy”.

She started music lessons recently. We were surprised when she chose an instrument that she had typically avoided before-a violin. She always complained that it hurt her ears. Today, she tells us the “scratchy” sounds make her happy.

They make me happy too. She’s a happy 8 year old, the brightest star in the sky. She’s my Sour Pickle and I love her just the way she is.

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How is your child the Bright Star in your life?

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0 thoughts on “A very bright star

  • June 8, 2009 at 9:46 am
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    Wow… you are so describing me as a kid… LOL Even as a teenager, I would sit “upside down” on the couch to watch TV. I would love to meet your daughter. My son is the same way, but almost opposite. He is overly cautious. It took him until he was nine and a half to even try to ride a two wheeler. My daughters are the reckless ones.

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  • June 7, 2009 at 3:51 pm
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    What a great story, thank you. Your child sounds like she will be a very creative person in life. I think although some children start life with difficulty when they are young that later they achieve exceptional things. She sounds exceptional and special. Not special in a disabling way but more in touch with life than most. What a loving mother you are.

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  • June 7, 2009 at 1:23 pm
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    She really does sound amazing! Hopefully those music lessons will be a wonderful experience for her.

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  • June 7, 2009 at 11:17 am
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    Awww!  That’s really sweet.  Good luck with the violin lessons.  ♥

    Reply

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