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

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

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

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!!

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 

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