Eosinophilic Night Before Christmas

 

Eosinophilic Disease Awareness

Eosinophilic Disease Awareness

EGID Night Before Christmas
‘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 Cara Koscinski

By- Cara Koscinski MOT, OTR/L

Mom to two children with Eosiophilic Diseases.  Her younger son is GJ tube fed with only two safe foods by mouth. Author of The Pocket Occupational Therapist– a handbook for caregivers of children with special needs. Questions and answers most frequently asked to OTs with easy to understand answers and fun activities you can do with your child. Order anywhere books are sold. http://www.pocketot.com

Organization Tips For A Successful School Year

OrganizationbyColor
I am often asked by parents, “What can I do to help my child to be organized?” Many parents tell me, “I feel helpless and overwhelmed every year because my child is so messy.” The best suggestion I can give is to begin organizing the homework area and start a daily routine at the onset of the school year. Be consistent! It may be difficult at first, but after three weeks you will notice a wonderful difference in the level of stress during homework and preparation time.

It is best to start by organizing the area near the door. Hang hooks for his backpack and jacket and as soon as he gets home from school encourage him to take them off and place them in this special area. Use masking tape if necessary to draw a box for younger children or if you do not have an area to place hooks. Any visual that helps to outline a place that’s uniquely your child’s area will be helpful. This is why pre-schools use cubbys and taped off squares for younger children. Make a list of items required on a daily basis. This includes things such as lunch box or lunch money; a planner/calendar; clothing; and homework. Use a white board or checklist so that your child can actually check or cross off the item’s name as he gets it ready.

Prepare an area for homework that your child uses every day at a designated time. When it’s time for desk work, ensure that the area is quiet and away from distractions such as the TV and radio. Clear the desk area from any items other than those which are school/homework related. Make sure the area is well-lit.

It’s always best to get in some exercise (at least 30 minutes) daily prior to beginning homework. Make sure to include gross motor activities such as jumping on a trampoline, dribbling a basketball, hula hooping, hop-scotch, or riding a bicycle to provide input to the sensory system. Provide crunchy/healthy snacks for your child. Often times, input to the masseter (a powerful muscle used when chewing) helps to organize us. You can try it out too! When you feel stressed or overwhelmed, try chewing on gum or crushed ice. You may already do this to calm yourself and not even realize it!

Color code each subject at the beginning of the year. Blue for math, red for Language Arts, etc. Each subject has a notebook and folder of the same color both at home and in the school desk so that the organization system carries over to the school classroom too. Every teacher could double-check and initial the homework assignment as your child writes it in the planner at school and the parent then signs as the child completes the assignment at home. I encourage parents to request (add to the IEP) that students are permitted to have a set of books for use at home. This entirely alleviates the stress of remembering which books to bring home daily.

Finally, the act of setting out clothing before bed each night will significantly help with the morning stress. Ensure that all pieces of the outfit are clean and organized the night before. This includes underwear, hair clips/ties, and socks. It is amazing how knowing exactly what will be worn the next day can help to calm anxiety.

Share your tips for organization with us….we may share them with our readers!

About the author: Cara Koscinski has her Master’s degree in Occupational Therapy. She is the author of The Pocket Occupational Therapist-a book for caregivers of children with special needs. She is also the owner of Route2Greatness, LLC-a company providing OT consultations and products for children with special needs. Cara is the proud mother to two sons with autism spectrum and sensory processing disorders. She has systemic lupus and strives to find the positive side of life. You can visit her site for more information at www.pocketot.com

(c)The Pocket Occupational Therapist

Developing Skills Through PLAY

Playground FUN

Playground FUN

Occupational therapists are fortunate enough to be a critical part of the treatment team for children with special needs. Any difficulties children may face as a result of having a developmental delay should be addressed by incorporating play into their daily routine. While working with the adult population, occupational therapists focus on remediating skills for daily living and for work related tasks. When assessing the skills of children, the therapist must look at the child’s play skills. After all, when children are not asleep they are learning about their environment through the various play activities they engage in during their day. Even completing the tasks of building blocks, completing a puzzle, and drawing pictures will yield skills that the child will use throughout his lifetime.

The skills, developmental stages, and all activities listed in this blog post can be found in our book The Pocket Occupational Therapist for caregivers of families with special needs. It’s PACKED with easy to read ideas and is like having your OT with you all of the time! Can be purchased on Amazon or anywhere books are sold.

When caregivers attend occupational therapy sessions, most inevitably ask, “Why does it look like you are playing during the session? How is this therapy?” The occupational therapist should explain therapy goals and how she will work to achieve them during the course of therapy. It is important for caregivers to feel comfortable asking questions about activities to complete at home to help to facilitate therapy progress. Most caregivers want to help their child to achieve his goals and are willing to participate if given the chance. It is by asking questions and through home programs given by the therapist that caregivers can be key partners in a child’s success on building skills that will propel him through his lifetime.

The most important thing to remember when working with your child at home is to begin at a level where he can be successful. Each success will help to build his confidence. No one wants to fail at a task and oftentimes, a child with special needs may lack the confidence to re-try something at which he has previously failed. Be sure to watch your child as he plays to determine which activities he prefers. For example, note if he prefers to engage in messy play or dry play. Does he enjoy colors, shapes, letters, or numbers? When seeking items for your home play time, be sure to remember his favorite color or movie character. His excitement will help him to have fun while learning.

Fine-motor coordination involves tasks of the hands and fingers such as holding a writing utensil, using a fork, buttoning, and shoe-tying. It is a good idea to help your child to strengthen his fingers for these tasks. Set up activities that you know he will enjoy and have success with. here are many different types of dough recipes that can be found on the internet. Make some dough and add his favorite color to it with a small amount of food coloring or add glitter. Mix two different colors of dough together and see what colors you can make. The addition of different scented oils can heighten the activity to a new sensory level. Peppermint and vanilla oils are commonly found at the grocery store. Note which scents your child prefers.

Most children love to open and close things. Be sure to save containers of all shapes and sizes. After cleaning them out, place a special prize inside. Ask your child to open each and find the prize. Prizes can be food, pom-poms, treats, or anything that will be motivating for him. Cut a slit in the top of the lid and ask him to put coins or bingo chips inside the container. This will give him the opportunity to develop good coordination skills. Also, use different eye-droppers or a turkey baster to transfer colored water from cup to cup. Switch from hand to hand or have a race to see who can fill the cup up first.

Gross-motor coordination and building up a strong core muscle system will be key factors in determining success with future activities such as bicycle riding, hopping, and playing sports in the future. Even when children are infants, supervised tummy time is important to help muscles work against gravity. Place a motivating object near baby so that he has to lift his head to see it. Use lots of praise and encouragement. To help develop core muscle strength as children get older, it is important to revisit tummy time. Ask your child to watch a small portion of his favorite television show while lying on his belly. As he gets stronger build up the time. Pretending to be animals like snakes crawling in the grasslands is a fun game for older kids.

Crawling is a stage often missed by children with developmental delays. The act of crawling helps to strengthens muscles, works to help to integrate the sensory system, and develops coordination of the arms and legs. Often, we need to give extra help to learn to navigate their bodies in the quadruped, or crawling, position. We can get down on the floor with our children and crawl together through mazes made of cushions; under tables; and along paths taped with masking tape. Make sure to encourage fun so that your child doesn’t realize he’s working on skills that may be difficult for him. Allow him to rest when he needs to.

Oral-motor skills are critical to eating, drinking, and speech. Often times the local thrift store is full of affordable tools for building strength in the muscles of the mouth. Straws of different shapes and diameters should be used for drinking or blowing bubbles into a pan of water. Have races by blowing cotton balls and other light items off of the table. The use of age-appropriate whistles is a fun way to get immediate reward as the child learns to produce sounds by blowing. Place whipped crème onto the child’s lips and ask him to look into a mirror and use his tongue to lick it all off. This will help him to strengthen the tongue muscles and become more aware of its movements. Try it with him and have a race. Use different tastes and textures such as chocolate syrup.

As you think about your child, keep in mind that he is a child first and he learns critical skills through playing. It will benefit him many fold if you provide him with opportunities to work on his areas of weaknesses while he has fun doing so. Don’t be afraid, your child is happy spending time with you!

By- Cara Koscinki MOT, OTR/L

Author of The Pocket Occupational Therapist- a handbook for caregivers of children with special needs. Questions and answers most frequently asked to OTs with easy to understand answers and fun activities you can do with your child. Order anywhere books are sold. www.pocketot.com

Tips for Preparing For School

School Days

School Days

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.  This is life-transitions are always approaching-some are easy while some aren’t.

Never fear!  The Pocket Occupational Therapist is here with 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!!

By- Cara Koscinki MOT, OTR/L 

Author of The Pocket Occupational Therapist- a handbook for caregivers of children with special needs.  Questions and answers most frequently asked to OTs with easy to understand answers and fun activities you can do with your child.  Order anywhere books are sold.  www.pocketot.com 

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 diagnosis 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

By- Cara Koscinki MOT, OTR/L 

Author of The Pocket Occupational Therapist- a handbook for caregivers of children with special needs.  Questions and answers most frequently asked to OTs with easy to understand answers and fun activities you can do with your child.  Order anywhere books are sold.  www.pocketot.com 

Bullying

We Love Puzzles!!

Why is it that children get bullied?  It’s my personal belief that some children make fun of what they do not understand.  If a child does something that’s perceived as different that another child, he/she may laugh or make a joke.  Sometimes our children are called “weird” or “stupid” or “different” by their peers.  Yes, it is true, our little puzzles may do some things that others may think is odd.  We all do things that make us feel comfortable, bite our nails, chew gum, twirl our hair….Sometimes, kids just have bigger motions like hand flapping, twirling, interesting infatuations etc. that make them feel comfortable, but they just cannot hide them-they shouldn’t have to.

In a recent session with my son, his therapist asked him which words she should not use during therapy or words that he just didn’t like.  I was fully expecting him to say, one of the four letter words or the use of the Lord’s name in vein (which we do not permit in our home).  Instead he totally shocked me and said, “Please don’t say weird, odd, crazy, or different because the children in my school use those words about me sometimes in my face and sometimes I hear them whispering them when I walk by.”  My heart TOTALLY sank and I was shocked.  He’d never shared this with me before.  It’s such a shame that he must experience this from other children.  He’s in elementary school.  What will it be like for him when hormones and peer pressure kick in?

When we came home and since then, I have used the word “different” and “unique” and “special” in a positive way and want him to know that being his own special person is so very important.  We should teach our own children, especially those who are typically developing and aren’t used to our kids’ cool flapping, waving, and hand motions that just because something is different makes it even more special.   We should teach our children to learn from “different” and that everyone has something unique and special about them to share with others.

PLEASE share with us your stories of bullying and how you cope.  Let’s try to help each other!

By- Cara Koscinki MOT, OTR/L 

Author of The Pocket Occupational Therapist- a handbook for caregivers of children with special needs.  Questions and answers most freqenty asked to OTs with easy to understand answers and fun activities you can do with your child.  Order anywhere books are sold.  www.pocketot.com 

A Life Without Food, Joshie’s Story

Please watch and share this video we made to raise awareness for food allergies and EE (Eosinophilic Esophagitis).  This week is feeding tube awareness week and there are many reasons why someone may need a tube.  This is Joshua’s story….Thank you for your support!

Visit APFED (American Partnership for Eosiniphilic for Eosinophilic Disorders)

www.apfed.org  for more information on EE.

By- Cara Koscinki MOT, OTR/L 

Author of The Pocket Occupational Therapist- a handbook for caregivers of children with special needs.  Questions and answers most frequently asked to OTs with easy to understand answers and fun activities you can do with your child.  Order anywhere books are sold.  www.pocketot.com