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

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The Casserole Society

HOW CAN I SUPPORT A CAREGIVER OF SOMEONE WITH SPECIAL NEEDS/CHRONIC MEDICAL ISSUES?

Support

By: Cara Koscinski ,The Pocket Occupational Therapist

*Re-Printed with permission

The old adage says, “You never know what happens behind closed doors.” Everyone has struggles and triumphs. Some deal with their situations more quietly than others. Raising a child with special needs or dealing with chronic illness can bring tremendous joy for families as their child reaches his goals and takes baby steps toward a more functional life. On the contrary, there are many “bad days.” The amount of stress parents must deal with on a daily basis can be great. The same may be true when you find out that someone in your life (or even yourself) has a chronic medical condition. The fact is, chronic medical conditions and disabilities can change every day. Just when you feel you’ve got a handle on things, circumstances change. There may be feelings of isolation and helplessness. Often times, we think “No one knows what I’m going through.” These feelings are normal and are expected. Having a support system in place is critical in dealing with trials we face.

Our society has been trained to be supportive in the short term. For example, when someone has surgery, we bring them a meal and a card or flowers. As a therapist, I call this the “casserole effect.” Yes, it’s my own term and I’ve used it for years. The patient is expected to make a full recovery and everyone moves on with life and their own business. Here’s another example: A greeting such as, “How are you doing today?” can be a formality in our society. The greeter may not want to know how you are doing and if you’d begin to tell him, he’d probably look at you like a deer in headlights. Everyone wants to move forward and deal with their own problems. No one wants to hear about yours-repeatedly. So, what to do when you’re dealing with a chronic illness and things just don’t “get better.” Most families lose friends and even some family but there are a few faithful people who stay for the long haul.

As an occupational therapist, it’s my job to look at the person as a whole and to assess how disease and disability affects each person’s daily life. Since every person is different, every person experiences things in a different way. Hopefully you or someone you love may benefit from reading the following lists.

The DON’Ts of providing support:

1) Don’t make promises you cannot keep. Do not offer to help if you do not mean it. Remember that someone may be counting on you.

2) Do not compare your situation to theirs. EVERYONE is different and there is no need to talk about yourself while the other person is trying to vent or lean on you for support. It is extremely irritating to me when I am speaking about my child’s medical procedure and the listener begins to complain about her own paper cut.

3) Do not make a food that contains any allergen/food someone cannot tolerate. I can think of nothing less considerate than making a meal with nuts if a child in the household is allergic to them.

4) Do not say that the illness is in the person’s head or that they are faking it. *Even if you think it….keep it to yourself.*

5) Do not give medical advice or treatments you’ve seen on television that are “cure-alls.” Leave the medical treatment/information to the person’s care team and medical staff.

6) Do not belittle someone when he/she is having a bad day. Just be a quiet listener and offer hugs, a listening ear, or kind smile.

7) Do not ask how things are going or how someone’s day is if you do not have the time to listen. It’s extremely rude to ask as a formality when someone else is hurting and could use a listening ear.

8) If you cannot say anything nice-do not say anything at all. Rude, hurtful, or thoughtless comments can cut deeply.

9) Do not compare the person’s illness to someone else who you know has something similar. Most likely, there will be lots of similarities from person to person in disease symptoms BUT the difference is how the symptoms affect the person’s daily life.

10) Do not appear frustrated when the person is having a bad day. Some days are good and some are bad. They are sporadic and not at all predictable. The person with the chronic condition wishes for good days too, believe me!

Here are the DOs in providing support:

1) Try to listen-whenever necessary. Be a quiet listener without offering advice. A shoulder to cry on or laugh with is of utmost importance.

2) Send random messages of support, texts, or e-mails. It is great to know someone’s thinking about you.

3) Learn about the illness or disease and ask how it specifically affects the family. Showing you’ve researched can show thoughtfulness. (Be careful not to offer medical advice, though. Researching statistics on the disease or it’s symptoms is helpful).

4) Volunteer to do errands. It’s easier to volunteer for specific tasks, “I’m going to the grocery store, do you need me to pick up anything for you?” “I’m driving past the restaurant; may I pick you up a meal?”

5) Offer to go to an appointment or therapy session. Moral support is priceless.

6) Get a gift certificate for the caregiver to help relieve stress. This includes a magazine subscription, massage, manicure, etc.

7) Do ask about the person’s health or personal situation before you ask them for a favor. It’s not all about what YOU want; it’s about being considerate and caring.

8) Offer to babysit or take the children out to a movie or the park. The break from caregiving can do wonders!

9) Do ask if there’s anything you can do for them today. Things can change quickly and an offer made last week may not apply to this week’s issues.

10) Do avoid gossip about the person involved, family circumstances, and any other personal information. Gossip adds to the stress of the situation and it has negative results.

Please remember that you have the ability to create or negate chaos in someone’s life. I’d like to encourage you to be the positive energy in someone else’s life. You never know, that somebody could someday be YOU going through an illness or disability.

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

He has a disability so he will never….

I’m re-posting one of our most popular blog posts.  Enjoy!

Recently, one of my children was diagnosed with Tourette Syndrome.  I couldn’t help but get the flash in my head that some of you may have right now….a kid screaming nasty words and slurs in public.  The media has indeed sensationalized this small portion of Tourettes.  In fact, according to the Tourette Syndrome Association, only 15% of people with TS exhibit this symptom.  With that being said, the judgement of my son immediately began.  Someone in my family said, “Great, well this means he will never get married!”  Another remarked that “it’s good that you have a nice home because it’s very likely that he will be living with you for his entire life.”  REALLY?!?!?!?!

I have never been a judgemental person.  I teach my children to accept everyone as they are.  God created everyone to be wonderful and He doesn’t make mistakes.  My husband and I try not to make derogatory statements in front of our kids.  Sure, we are not perfect but sincerely strive to teach our kids that bullying others or making judgements about others is not OK.  Some kids have obvious differences, such as my son.  He has a feeding tube and has frequent involuntary eye and body movements.  My good friend’s son has one arm.  Another friend’s son has Down’s Syndrome.  These children have SO much to offer those who get to know them- those who dare to see beyond the physical.  My son is the sweetest child that I have met.  When he sees someone crying, he immediately tries to console them.  He is smart and loving.  He is good at things that interest him.  He WILL change the world someday, and has already changed the lives of those who see beyond the things which make him “different” than themselves.

What about you?  What makes you different than others?  What do you do when you see someone different that you are?  Do you judge?  Do you make comments that may cause pain to others?  Are you aware that variety is the spice of life?  I encourage you to look at your reactions to others, to look at your children’s reactions to others.  What gives any of us the right to say negative things about others out loud or to their face?  You don’t have the right to tell someone that their child will NEVER do ANYTHING.  The fact is, you should not say anything to any mother bear like me who will stop at nothing to ensure that my children have every chance to do what they dare to dream!

Please leave a comment to give me your thoughts….positive or negative….

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 

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

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!!

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 

He has a disability so he will never….

Recently, one of my children was diagnosed with Tourette Syndrome.  I couldn’t help but get the flash in my head that some of you may have right now….a kid screaming nasty words and slurs in public.  The media has indeed sensationalized this small portion of Tourettes.  In fact, according to the Tourette Syndrome Association, only 15% of people with TS exhibit this symptom.  With that being said, the judgement of my son immediately began.  One person very close to me said, “Great, well this means he will never get married!”  Another remarked that it’s good that we have a big home because it’s very likely that he will be living with us for his entire life.  REALLY?!?!?!?!

I have never been a judgemental person.  I teach my children to accept everyone as they are.  God created everyone to be wonderful and He doesn’t make mistakes.  My husband and I try not to make derogatory statements in front of our kids.  Sure, we are not perfect but sincerely strive to teach our kids that bullying others or making judgements about others is not OK.  Some kids have obvious differences, such as my son.  He has a feeding tube and has frequent involuntary eye and body movements.  My good friend’s son has one arm.  Another friend’s son has Down’s Syndrome.  These children have SO much to offer those who get to know them- those who dare to see beyond the physical.  My son is the sweetest child that I have met.  When he sees someone crying, he immediately tries to console them.  He is smart and loving.  He is good at things that interest him.  He WILL change the world someday, and has already changed the lives of those who see beyond the things which make him “different” than themselves.

What about you?  What makes you different than others?  What do you do when you see someone different that you are?  Do you judge?  Do you make comments that may cause pain to others?  Are you aware that variety is the spice of life?  I encourage you to look at your reactions to others, to look at your children’s reactions to others.  What gives any of us the right to say negative things about others out loud or to their face?  You don’t have the right to tell someone that their child will NEVER do ANYTHING.  The fact is, you should not say anything to any mother bear like me who will stop at nothing to ensure that my children have every chance to do what they dare to dream!

Please leave a comment to give me your thoughts….positive or negative….

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