Karla's SPD Journey: A Family Affair
This whole thing really started when *I* was little. I had so many
issues as a child that no one REALLY picked up on...
- I hated clothing- especially socks, shoes and shirts.
- I had a speech problem and went to the school speech therapist for
treatment.
- I struggled in math so I was pulled out for tutoring.
- I had a problem with noise- my mom said I cried every time a firework
would go off for 4th of July.
- I hated the sound of my own mother's voice. (she is a VERY loud talker
and laugher).
- I hated the sound of laughter.
- I hated crowds.
- I HATED hugs and kisses.
- Even the thought of school gave me a stomachache.
- I gagged when I brushed my teeth, toothpaste was "too spicy".
- I hated meat (and still do).
- I could never wear dresses or jewelry.
- I would get very hyper and never shut up when family would come over.
- I had one friend all thru middle school and high school.
- Having my hair tied up HURT my head.
- Having my finger nails cut HURT.
- I would and still do get headaches from the TV and computer screen or
headlights on cars.
- I can hardly listen to music- the sound of hissing that no one
else seems to hear but me- the sound of a high hat drives me crazy.
- Fluorescent light hurt my eyes and ears in school. I often would put my
head on my desk and cry.
- Baths ALWAYS felt too hot.
- Ketchup and mustard are too strong for my tongue. (LOL)
- Certain sounds bother me so much that I could hit or throw whatever it
is that's making the sound- someone laughing, someone's voice, certain
music, a baby crying, someone screaming...
But I somehow have made it to an adult.
I'm VERY anti-social. Unless it's one on one. I NEVER went to one party
and only a few concerts in high school.
It wasn't until my daughter started HATING socks that I said to
myself- "hey, whatever- I was the same way when I was little", just joking
about it and blowing it off. Then came shoes and certain shirts and
"those" pants.... I still thought that I could deal with a few quirks.
Well... we moved and then preschool let out for summer (too much
change for an SPD 4 yr. old) She went into full blown sensory overload
like nothing I had ever seen.
Now instead of a few things bothering her- ALL clothing bothered her.
And by all, I mean ALL. Her underwear was a big one.
Smells started bothering her, even flip flops... I didn't know what to
do. She cried and screamed and yelled ALL day long. She was so angry- all
the time. I told my friend that I didn't think it was normal for a child
to spend the majority of their day THIS angry and frustrated. She was
sitting in the corner of her room crying- naked.
So, I went on line and googled "kids who won't get dressed",or
something like that. A ton of things came up but one father had written on
a message board about his daughter and all her extreme fits. Another
father wrote back and mentioned SI. That was the 1st time I heard/read
about SPD.
Then some how (God) I was sent to this web site and I was
literally screaming "OH MY GOSH!!! This is my kid! This is ME!" I felt
relief and disbelief and sadness all at the same time. I felt like finally
we had an answer. I felt like this couldn't be happening. And then I felt
the guilt of ALL the times I had punished my poor baby for things she
couldn't help!
I printed up the
SPD Symptom Checklist and filled it out- I called the Dr. in
tears. She said to wrap her in a blanket and come on down. I did and she
referred her to an Occupational Therapist- the Dr. had heard of SPD!
(Thank God)
She is doing so much better now- we've only been to 8 or 9 OT
appointments but the improvements are amazing. She gets dressed on a
somewhat regular basis now. She still has issues with socks, shoes and
underwear but not as bad as before. She still has A LOT of issues
that I'm not sure will ever go away. (public bathrooms [or ANY bathroom]
come to mind) But, at least we're on the road to recovery.
Looking back at her babyhood, I can see now that NOT ALL babies act like
she did. Everything made her mad. EVERYTHING EVERYTHING EVERYTHING!!!!
Leaving somewhere was always a fit. But not just any old fit- she would
scream and cry and yell. She would hit and kick in the air, it would take
2 or 3 people to hold her down.
She was a horrible eater. She lived off a bottle until she was 3 1/2
and a Nuk until 4. She chewed on her Nuk more then anything. She stuffed
her cheeks, never swallowed, gagged on foods. She would over stuff her
mouth and then spit it all out. She is, and was, a picky eater- it not
only had to be a certain food but it has to look right to her.
I couldn't take her anywhere- she was impossible. (still is sometimes)
But looking back it all made *sense*.
She would complain about the temperature of her bottle.
I would literally have to sit on her to change her diaper (we still
have potty training issues).
The apple doesn't fall far from the tree...
It's weird... when this was all really explosive, my ex-drug abusing,
alcoholic father called. I told him everything we were going thru. He said
"I hate ANYTHING touching my neck or a suit and tie. Or long sleeve
shirts. After my mom would put me in my p.j.'s at night and leave the
room, I'd strip down naked. I can't stand having my hands dirty" and it
goes on. He's ambidextrous, has sloppy handwriting, was a poor student,
bad at math, bad speller, dropped out of school, and eventually turned to
drugs and alcohol to escape and deal with his issues.
And then there were two... I have another daughter. She was
born a normal weight. But lost "too much" right after. She had a hard time
nursing, she NEVER ate baby food, stuffed cheeks, gagged on foods, would
never swallow (sound familiar?). She was dropping weight and her
doctor was worried. So he sent me to a GI specialist. They did test after
test after test and could find nothing wrong other then she was too small-
2nd percentile. They were throwing around "failure to thrive, Celiac
disease, mal absorption problems, and so on. They threatened to admit her
into the hospital 3 times- if she didn't gain weight within a week. She
was still too small but the GI wanted her sent to an OT for an evaluation
regarding her food issues. (She didn't want to admit her to the hospital
if it wasn't needed and neither did I) Well. I told the OT what was going
on and that her sister has SPD. The OT thought that my other daughter has
SPD too.
NOOOOO!! I wanted at least ONE "normal" kid! Why can't I have
one "normal" kid? It's not fair! Don't I deserve a "normal"
kid? Don't I deserve a break!? After all...I got over it!
(or did I?)
But, now, I accept that this is just how things are and it's okay. I'm
helping my kids before they end up like me or my dad. We are making
progress and headed in the right direction... at last.
Author: Karla
SPD Parent SHARE Host Spring Valley, CA
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