Gina



                               

The dread of last summer visited us already this spring.

Nights filled with tiny bumps about J’s feet, legs and arms that delivered the unsatisfiable itch. No anti-itch lotions or creams could touch it. The “brush” usually reserved for sensory processing disorder related therapy was now used to give temporary relief to the insanity. Of course it only did so for the time it was being used, as the moment we stopped the scratching, the itch would return.

It would drive J crazy. It would drive us crazy. Every single day and night filled with the routine of constant itching.

Towards the end of last summer, we visited our immunologist for suggestions. Puzzled, he was of what it could be. It wasn’t a food allergy, these were already ruled out. Interesting for where it would happen…all parts of his body exposed to the sun. Actually, just his limbs with his face and neck being spared.

It couldn’t be detergent, since it wasn’t the parts his clothing touched. Same for lotions, sunscreen, bug spray etc. It was decided that J had an extremely rare occurrence of Porphyria…in this case, in the form of an allergy to the sun.

Really?!?!?

Well, we thought, why not. He has Cerebral Palsy, Autism, Epilepsy (a rare form of epilepsy at that), Sensory Processing Disorder…why not hit him with an allergy to the sun just for giggles (we would say in our most sarcastic jokes). All the testing that could be done was only for a final determination that he was NOT allergic to the sun – which wasn’t finally figured out until the end of the summer when the bumps simultaneously disappeared with the disappearance of our sun worshiping traded for winter.

Until a couple weeks ago.

The bumps reappeared. Within the outside arches of his feet. Unsatisfiable itching. No lotion subsiding the need to scratch…We were up all night.

Feet in Grass by John Kenzer via FlickrThen it dawned on us….he went running through the grass. Barefoot. That day. And now he’s itching exactly where his feet would have touched the grass. Not on the tougher, rougher underside, but on the part of the foot that begins to turn into the delicacy of skin. It itched there.

He’s allergic to the grass’s touch on his skin.

Not the sun. No rare diagnosis or disease was due to bring us even more exhaustion and him even more care…it was the grass. Simple, though, quite honestly somewhat a pain in the a$$ during the summer fun. But. Simple. Grass.

Sometimes we forget that even though he’s a Special Child…he’s also a child. A child who is still susceptible to all the “normal” things that any other child is susceptible to.

Has something like that happened for you?

(Photo By:  John Kenzer / Flickr)



                               

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Anne Moore Burnett’s “Step Ahead of Autism” Reviewed


“Autism is not a puzzle but an opportunity to step up to the challenge and be the best parent you can be.”
                                           - Anne Moore Burnett

How many of us have thought about staying a step ahead of Autism instead of trailing behind picking up the pieces?  Anne Moore Burnett, author of “Step Ahead of Autism: what you can do to ensure the best possible outcome for your child” has….and she’s passing along what she’s learned.

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SPD Foundation Conference : International Symposium, Parent Workshop & Scientific Workgroup

SPD Foundation Presents in Boston

This March 16th – 18th, the SPD Foundation is raising the bar of information available to parents, caregivers, therapists and physicians alike.  It’s the 14th International Symposium & Parent Workshop – Celebrating the 10th Anniversary of Sensory Processing Disorder Scientific Workgroup.

This event is a ‘must attend’ for anyone involved with Sensory Processing disorder as this offers a unique opportunity to get updated on the recent research findings and clinical implications.  This SPD event also includes:

  • an introduction to Sensory Processing Disorder with examples from Diana A. Henry, MS, OTR
  • Carrie Fannin will be facilitating a parent networking meeting on the Friday before the conference
  • Other keynote speakers include:

Lucy Jane Miller, PhD, OTR
Alice Carter, PhD
John J.

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Do Teachers Know Your Kiddo As Well As You Do?

They know him almost better that we do….in a way.”

There was a time when C would have never said this.  A time when, should someone utter these words to either of us, the emotions would swell.  Our eyes, my eyes, would betray my immediate offense to the statement – the anger.  How could anyone think they know our son better than we?

We who have raised him, helped fight his demons cried with, held down for medical procedures, given therapy to, laughed with, cried with, marveled over and advocated for!  How could anyone know him better?!?  But on the day of this statement, he is correct…not that “they” know him better, but similarly or as well as we do.  Who?  His educators.

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This Year’s Medical Goodie Bag

  • Alternate Tylenol and Ibuprofen every two hours
  • Alternate daytime / nighttime cold / cough remedy OR
  • Allergy antihistamine – whatever seems to work well or that particular kiddo
  • Vicks Vapor Rub (aka Mentholatum for other ‘old school peeps’ like me) on the chest and slathered about the feet at night with socks
  • Warm mist humidifier
  • Cold damp cloth on the forehead
  • Albuterol breathing “treatments” as needed for wheezing
  • Antibiotics when they’re finally granted

Medical Goodie BagThis is my new routine – my sick routine of the last month or more. It started with J’s strep which was quickly and painfully eradicated with a bicillan injection.

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Insurance Advocate: Why You Need One and How To Get One

Remember that list of caseworkers I told you about? Well, in my haste to count on all my fingers the number of caseworkers in our life, I neglected one very, VERY important caseworker / liaison we’ll call “Miss W, The Insurance Gal”.

I could tell you a lot about “Miss W, The Insurance Gal”; give a number of examples of how this woman has made our life easier, insurance more accessible, has caught mistakes, gained us two more IVIG treatments (yes you heard me, two more) that she said was ‘owed’ to us. I could tell you about how she singlehandedly has the Children’s Hospital working for HER (thus for us) to get more approved…I can tell you just how much I want to squeeze this woman with shoulders a little less weighted…but instead, I want to encourage you should get one.

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Don’t Over-Think! Just Do It!

With J’s ‘improvements’ rapidly sliding down hill with the more time that passes between his last IVIG treatment and the present, we’re headed back down the road of massive meltdowns. Some of these are from our own doing. Case in point:

We headed to a local large store for FREE Santa photos. We left early enough to be there shortly after they opened. Apparently so did everyone else. It’s a large, large store, huge ceilings, lots of tasteful things on the wall. Festive lighting (not fluorescent), and stuff to see everywhere! Clothes, fish in HUGE fishtanks, Santa’s “area”, race car tracks, carnival style shooting ranges, train tracks and a carousel.

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How Many Caseworkers Do You Have?

My calendar this time of the year gets a little cramped. We have a few birthdays (read that as all three kiddos), obviously Thanksgiving, Christmas, New Years (which also happens to be our anniversary). There’s only two annual events I attend for any given year…both this month – what AM I going to make for that cookie exchange anyway?!?

Of course we always have EEGs this time of the year too…one already scheduled this month….not to mention the one in October.  Our annual IEP’s, etc., etc.

Looking at this particular calendar in this particular year, I noticed something else…I have appointments for the next 3 Tuesdays all at the same time (ironically).

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Don’t Forget An Important Part of Your “Thankful For” List

Thankful

A Day to remember why you’re thankful. What you’re thankful for.

Thankful for partners, the few (or more) supporters that surround you, jobs / careers, friends, insurance, making it this far in your journey. This year, this time, I encourage you to reach within, look within – to you. Inward to your strength, your drive and determination.

This year, I hope you’ll take a moment to acknowledge yourself, acknowledge that you are a very large piece of your child’s puzzle…and you are someone to be thankful for.

Happy Thanksgiving!

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Do You Wonder What Life Would Be…

When you watch other children, the same age as yours…when you watch other children in the movies, through the streets, wherever you might be, do you ponder? Do you compare?

Do you wonder what life would be if only things were just a little different? Do you wonder what your largest struggles could be? Stop for a moment and consider…what do you really think would be your biggest worry, your stressor that runs with you, haunting your days…haunting your nights?

Children Playing

Children Playing by Rakka via Flickr

Do you yearn for the day your little one will run the streets in a group of friends up to what kids should be up to, just before crossing the line of no good?

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