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,  Spring Valley, CA

Related Resources and Further Reading

Real Stories Of SPD Families - It's time we told the REAL stories of SPD Families. The struggles, hardships, pain, sorrow, hope and strength of parents willing to share their personal journeys.

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