Eosinophilic Night Before Christmas

Eos Night Before Christmas

          ©Cara Koscinski

  ‘Twas the night before Christmas, when all through the house     

The pump was a whirring, and waking the mouse;

His feeding bag was hung by his bed with care,

In hopes that some nutrition soon would be there;

The children were nestled all snug in their beds,

While visions of eating real food danced in their heads;

G and NG Tubes, each with their caps,

If they’re open, they’ll leak and disturb my kid’s long winter’s  nap;

When the pump started beeping, there arose such a clatter,

I sprang from my bed to see what was the matter.

Away to his side, I flew like a flash, Tore open the covers – saw a kinked line and a rash….

I think of the time that he could eat food.

When people didn’t judge us, some are just rude.

The cakes, cookies, and foods that he cannot eat.

The dream of giving my boy just one food treat,

Has vanished and won’t come back very quick,

No one can cure it, not even St. Nick.

More rapid than lightning the vomiting came,

Eosinophils cause this disease, EGID is the name.

In Greenville, Colorado, Pittsburgh, and Philly!

In Boston, in Texas, in Florida, in Cincinnati!

They work on research, so our kids can grow tall!

Now find a cure today! Please we pray!  Work together all!

Dreams of having a typical childhood away fly,

Because of this disease, our children must cry.

Vomiting, pain, diarrhea, and choking,

ulcers, fatigue, another doctor-are you joking?

Enemas, laxatives, surgeries, scopes,

Steroids, tests, biopsies, IVs-yet our kids have hope!

Just when you think this disease has calmed down,

Our kids are faced with another re-bound.

Insurance won’t pay for his special food,

We must fight for everything, we hate to be rude;

A pump and some formula flung on his back,

And another day goes by with him wearing his pack.

His eyes — how they twinkle! His laughter– how merry!

He cannot take even one taste of dairy!

Just a little bit of food he can’t chew with his teeth,

We must steal food away from him like a thief.

One or two safe foods, we learn to cook.

Expensive food stores, all of our money, they took.

Someday he’ll be chubby and plump, like a jolly little elf,

And I’ll laugh when I see him, in spite of myself;

Until then, we all will continue to fight…..

“Merry Christmas to all, and to all a good-night.”

© 2011  Shared with permission

December 20, 2012 at 4:08 pm Leave a comment

Holiday Sensory Overload

Right about now, my kids are on total sensory overload!!

Have you noticed increased stimulatory behavior?  Increased “scripting?”  Increased need for jumping, crashing, deep pressure activities?  This is a normal response to the overload of sensations that come from the holiday season.  Let’s dissect the Christmas tree:

1) It’s new to have a tree inside of your home vs. outside.

2) The smell of a real tree or the materials of an artificial tree….yes, the fake tree has a smell (ask your child with autism!)

3) The lights coming from the tree and bright ornaments cause the brain to process more visual input.

Then there’s the music, Santa in his bright red suit, the excitement of presents, the change in routine in school to special programs, concerts, and parties…..

Please consider that your child may need extra time to process and to complete homework and activities of daily living.  Be patient and try to maintain structure as much as you can.  My son’s need for a visual schedule with rewards is strong every year at Christmas.  Our kids with sensory processing difficulty may not wear the fancy clothing, ties, or sweaters that we’d like for them to….that’s OK!  Let them wear that seamless shirt, sweatpants, or comfy clothing if they want.  Make a nice handout for your family about sensory integration issues if you need to and kindly give it out as needed.  Your child will thank you for understanding and giving them a little extra patience this time of year!!

Please let us know what your child’s struggling with this holiday.  We can help each other out with ideas and suggestions!!

December 12, 2012 at 9:45 pm 3 comments

Holiday Sensory Overload

Anyone else overwhelmed right about now?

So many parents complain about their children’s behavior during the holidays.  Right about now, my kids are on total sensory overload!!

I’m re-posting the following from last year….hope it helps.

Have you noticed increased stimulatory behavior?  Increased “scripting?”  Increased need for jumping, crashing, deep pressure activities?  This is a normal response to the overload of sensations that come from the holiday season.  Let’s dissect the Christmas tree:

1) It’s new to have a tree inside of your home vs. outside.

2) The smell of a real tree or the materials of an artificial tree….yes, the fake tree has a smell (ask your child with autism!)

3) The lights coming from the tree and bright ornaments cause the brain to process more visual input.

Then there’s the music, Santa in his bright red suit, the excitement of presents, the change in routine in school to special programs, concerts, and parties…..

Please consider that your child may need extra time to process and to complete homework and activities of daily living.  Be patient and try to maintain structure as much as you can.  My son’s need for a visual schedule with rewards is strong every year at Christmas.  Our kids with sensory processing difficulty may not wear the fancy clothing, ties, or sweaters that we’d like for them to….that’s OK!  Let them wear that seamless shirt, sweatpants, or comfy clothing if they want.  Make a nice handout for your family about sensory integration issues if you need to and kindly give it out as needed.  Your child will thank you for understanding and giving them a little extra patience this time of year!!

Please let us know what your child’s struggling with this holiday.  We can help each other out with ideas and suggestions!!

December 12, 2012 at 9:03 pm Leave a comment

Thanksgiving Thanks from Tom Turkey

This Thanksgiving is another special one.  We are blessed to have our family together.  We are blessed that our children have a special nutrition to drink/be fed that is safe and totally hypoallergenic.  Tom the Turkey is especially happy that we saved him this year.  We won’t be purchasing a turkey because our children are both allergic to it.  I’m not opposed to eating turkey and plan on joining our friend’s family for the holiday. But, in our home the smell of g-tube food and Dum-Dum lollipops will prevail.

We are thankful for each precious moment with our children.  It’s not easy to raise children and is even more difficult when they have special needs.  God has blessed us with the opportunity to learn how to use sign language, feeding tube, PECS, and behavior charts.  We have met wonderful therapists, friends, and other parents who have children like ours.  Facebook and blogging have brought us even more helpful connections.  Indeed, we have MUCH to be thankful for.

HAPPY THANKSGIVING from Route2Greatness to your family!!

November 20, 2012 at 8:11 pm Leave a comment

Tips for Preparing For School

School already?!?!  Yes, it’s that time of year.  When I saw that first back to school commercial, the anxiety of preparing for school came upon me.  I knew that the transition from shorts to pants, from casual dress to uniform, from free-time to structured learning was approaching quickly.  It seemed as though I just transitioned the kids into summer activities and they were finally comfortable with the routine.  No matter, school and end of summer arrives whether we (and our children) are ready or not.  Life is much like this-transitions are always approaching and some are easy while some aren’t.

Never fear!  Here are some tried and true suggestions for your family.  Anxiety comes from not knowing what is coming ahead.  Giving your child control of anything possible is a good way to build confidence and decrease worry.

1) Lay out pants, dress shirts, or school uniforms at least three weeks before school.  Habits can take at least 21 days to be broken.  Allow your child to shop with you and make choices if possible about school attire.  Often times, uniform material is much more stiff and “pinchy feeling” than lighter summer clothing.  Make a schedule and encourage your child to wear school clothing for a brief time each day and gradually work up the time.  Be sure to offer a reward for a job well done!  Having another child such as a sibling or friend complete this activity with your child can be especially fun.

2) Do not wait until the last-minute to purchase school supplies.  Take your child to the store and allow him to make choices of color of notebooks, folders, brand of pencils, etc.  Any choice you are able to give your child encourages feelings that he’s in control of the situation.  This is important as so many aspects of school are beyond his control.

3) Ask your child to help you to label items.  This is a good way to practice writing his name.  Allow him to  choose the color of the marker.  Use of an “old-fashioned” label maker is a good way to increase hand strength.  Squeezing the tool can work those hand muscles.

4) Obtain the daily school schedule and post it on the refrigerator or a centrally located area.  Review the schedule daily and use words such as, “It’s 9:00 now.  When you are in school you will be in reading class with Mrs. Jane.”  Do this frequently throughout the day.

5) Begin to practice handwriting and keyboarding with your child. Have him help you to make the grocery list, daily schedule, or write cards to relatives.  Making handwriting fun is important to build confidence and strengthen those hand muscles in preparation for school.

6) Begin bedtime routines at least three weeks prior to school.  It won’t be easy so do not fret!  Gradually work up to the desired bedtime and make a written “wind-down” schedule of activities that are calming and the bed time routine.  Allow your child to help make the schedule and give rewards for every little success.  Use calming music, massage, and soothing scents in the bath to encourage the body and mind to relax.

7) Meet with your child’s teacher prior to the first day of school.  A trip to his classroom with a camera is an excellent preparation activity.  Allow him to take pictures of the classroom, desk, cubby/locker and make a scrapbook of his school and room.  We had a child who was extremely fearful of the fire alarm/drill in the classroom.  We permitted him to take pictures of the fire alarm and used the Sound-Eaze and/or School -Eaze CDs to listen to the sounds of fire alarms.  Giving him the heads-up of what sounds to expect was a good tool to decrease his anxiety of the un-known.                                                                                                                         Some schools have summer camps.  If the school permits it, allow your child to sit in on a camp day/class to get used to the noises and bustle of the classroom.  The more preparation you can give your child, the more likely he will be to make a successful transition into the classroom.

8) Encourage your child that he should try his best and that he does not have to be perfect!  Mistakes are the best way to show that your child is trying.  Review errors with him and encourage him to problem solve.  Many of my clients believe that their child is trying his best, but often get too busy with life’s events to take time to reward for the good qualities and times when children succeed.  We fill out repeated questionnaires asking what our child’s weaknesses are that we often forget about their strengths.

What activities does your family have to prepare for school?  Let us know!!

PS:  Don’t forget about our new book, “The Pocket Occupational Therapist” due out in the UK in November and the US in December 2012!!  Visit Jessica Kingsley Publisher’s site at http://www.jkp.com/catalogue/book/9781849059329, or www.pocketoccupationaltherapist.com for more information.

August 6, 2012 at 11:29 am Leave a comment

What is a “stim” or stimulatory behavior in autism?

We have heard of “stims” or stimulatory behaviors in children with autism.  It is one of the signs doctors look for in making a diganosis of autism.  Stereotypic or stimulatory behaviors include rocking, flapping, making noises, picking, rocking, or spinning.  In fact, we all have behaviors that are considered stimulatory.  What do you do when you are in a stressful situation to calm yourself down?  Some people twirl their hair, chew their fingernails, or tap their fingers on the table.  So, everyone has some behavior that is calming.  So, what is the difference between you and a person with autism?  The ability to determine the “social acceptability,” duration, and timing of the behavior is the key.  In a meeting when you are stressed it is not appropriate to flap your hands wildly, twirl around, or make clicking or humming noises.  You have learned that biting your fingernails or bouncing your leg is an acceptable way to deal with stress.  Chewing gum or ice is another acceptable way to self-soothe in public.

Most people with autism also have some form of sensory processing disorder.  This means that everyday noises, sights, smells, movements, and actions may cause a stress, fear, or un-expected reaction.  The noise of a dog bark may sound like nails on a chalkboard. So, that person may need to engage in a stimulatory behavior in order to calm himself down.  The “stim” is a way of soothing in a stressful situation, controlling negative emotions, or dealing with anxiety, anger or fear.  So, when someone is hyper(over) sensitive to everyday situations, sounds, sights, etc.  he needs to engage in more stimulatory behaviors to help calm himself down.  It’s like a cycle.

When do we “break” the cycle?  Personally, I think that our society makes rules that are difficult to follow.  Why is it more acceptable to chew on your fingernail than to flap your hands?  At what point is it no longer cute for a child to spin around in public?  Someone, somewhere is constantly judging your actions and it’s that mold that we have to fit into that causes more stress.  My older son makes noises with his mouth and flaps and tightens his hands in private only.  We have taught him that it is inappropriate to do so in public.  When he is stressed in a situation, he knows to go into a bathroom or away from eyesight of other people and stim until he’s calmed down.

This is much more difficult to teach children who have more severe forms of autism.  When they may rock and flap, they get the staredown from people.  I think this is sad.  With autism on the rise, maybe the ones who rock and flap will outnumber those who don’t!  Can you imagine????  Everyone else flapping around staring at YOU because you are the one standing still chewing your gum and biting your fingernails………….thoughts?

Thank you for traveling down the Route2Greatness with us!  www.route2greatness.com

April 14, 2012 at 1:01 pm 4 comments

Sensory and Fine Motor Activities for EASTER….

Dear Readers,

As I hopped down the aisles of the stores this Easter season, I found some egg-citing ideas for our kids with sensory processing disorder.  As I filled my basket to the brim, I thought I’d share some ideas for your little bunnies.

Straws of all shapes and colors are found in the spring aisles.  Look for the straws that are “twisty” and shaped into all kinds of fun things.  Ask you child to use them while drinking or put a few drops of liquid soap into a shoe box tupperware filled with water, and have him blow into the straw to make bubbles in the water!  Also on shelves now are different scented liquid bubbles, soaps, and colored bubbles.

Use the boxes of Easter or spring themed stickers to make a scene for your Easter party.  Make a sign out of the stickers and poster board to welcome the Easter bunny and your family to the Easter meal.  The paper grass is fun to make by cutting small strips of construction paper and then glueing them to the sign or laying them into a basket as a filler.  All GREAT fine motor coordination boosters.

Crumble up small 2 inch by 2 inch squares of colorful tissue paper and have your child roll them into small balls.  Glue the balls into patterns on a construction paper egg to make fun creations.  You can trace and cut a paper chick out and use yellow tissue paper to make the chick’s downy coat.  Cotton balls can be glued to a paper cut out rabbit.  Just find a pattern for any Easter themed item and cut it out of construction paper….the ideas are limitless and your child’s fingers will get a fun workout without her even realizing it!

Whistles of all shapes and sizes seem to appear in the Easter aisles.  (Of course, be sure to check the age on the package.)  There are many different bunny, chick, and bird whistles in multi-packages.  Add them to a shoebox that’s made of plastic and make an oral-motor bin filled with all kinds of whistles.  Around the holidays, stores seem to sell whistles that match the season.  You can have quite a collection for great oral-motor fun!

Pipe cleaners can be formed to hold items such as candy.  It’s fun to see if you can make different Easter themed shapes together out of colored pipe cleaners. 

You can wrap colorful crochet string around a balloon and then dip it into starch.  Be sure to wrap it in all directions, leaving only small spaces to give it stability later on.  When it’s dry, pop the balloon and you have a cool, egg-shaped design!  The starch is messy and you’ll have to dip and roll the balloon covered with string until it’s saturated.  Let dry in a pan (12-24 hours) and then after it’s dry, cut out an oval in the front and center.  Fill with Easter grass and you have a cool basket shaped like an egg!  This activity is fun but very messy.  It may be great to do this craft together and not focus on how messy your child’s hands get. 

Paper plates can be used for a bunny’s face and you can glue bunny ears onto the top!  Use crayons or markers to decorate your bunny’s face.  Use pieces of felt to glue on eyes, nose and mouth! 

Have more ideas?  Share with us….. HAPPY EASTER!!  Thanks for hopping down the Route2Greatness with us!!

April 4, 2012 at 8:21 pm Leave a comment

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