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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5 Strategies to Focus on Your Child’s Positive Traits….

Positivity!Yesterday I was working with my son on a Social Skills app.  This has become a daily part of our routine…..Those with typical children may take for granted the social skills that our kids struggle with and must work to learn.  I spend a-lot of time and effort with my boys who have special needs working on what doesn’t come naturally so that they can have what I feel will be a better life.  As usual, I was proven wrong by my son. Just because these kiddos have to go to therapy, countless appointments, and work a little harder at things, doesn’t equal unhappiness.  This may be the life your child is used to and has grown to love.

This time he was struggling to name three things that are in a refrigerator, three things that are green, and three things you use a key for.  I was giving prompts and cues and he gently said, “Mommy, I am having the best and most fun life ever!”  Did I just hear that right?  You mean that he’s happy just the way he is?  I asked him what he meant.  He proudly said, “I love my therapists and the people who come and help me to learn.  I am SO happy!”  My son does not prefer social activities, has only one friend, doesn’t relate to most people he meets, etc. yet he’s having the best life ever!  Reality check for me!! While I may look at and sometimes focus on his weaknesses, he has embraced them and loves the wonderful person he is becoming.  I felt embarrassed for myself.

While I understand that children with special needs often do not prefer to work on areas in which they are weak, we must sometimes force them to in order to interact with their peers and be functional members of society.  As I state in my book, The Pocket Occupational Therapist, for caregivers of children with special needs, there are many times we are asked to list our children’s weaknesses.  The plethora of forms we must fill out all ask us what goals we would like to focus on.  This means analyzing weaknesses and listing those things we’d like for our children to be able to do.

Here’s a helpful list I put together to help focus on the positive traits of your child with special needs.

1) Make a list of your child’s strengths. The list could include anything you love about your child or what makes him/her unique.  List things that your child brings to your family and to the world.  Ask someone else who loves your child to list their favorite things too.  There’s nothing more special to a child than telling them what you love about them.  It’s a wonderful confidence booster.

2) Make a book with your child about what makes him/her special.  This should include pictures, words, drawings each of you make.  Make it in your child’s favorite color.  If possible, make it into an actual book.  This can be done via many websites or at your local office supply store.

3) Compliment your child daily and in front of someone else.  It’s amazing how much praise from our parents means to us!

4) Encourage your child to tell you when he’s done something he’s proud of.  Jump up and down or give a high-five.  Let your child know how proud you are of what he’s done.  Make eye contact with your child to show him you’re actively listening.

5) Create a special handshake or gesture that is unique between the two of you.  This could be a wink, special nod, a sign language gesture, etc.  Be creative and do this often.

I am working on doing the activities above with both of my boys….won’t you join me?

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 is an advocate for children with special needs and enjoys speaking publicly about OT techniques and strategies. You can visit her site for more information at www.pocketot.com

Back to School Tips

School Days

School Days

This is a re-blog of one of our most popular posts on preparing for school….enjoy!

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

GO Out of Your Comfort Zone

Self-LoveAs many of my readers know, I’m the mother to two children with autism spectrum disorders and to complicate things even more, my younger son has a terrible rare disease which renders him un-able to eat food by mouth. He must be strictly fed by a tube in his stomach to live. I can presume that no little girl dreams of this life I’m living when thinking about her future-I surely did NOT. Yet, I am extremely thankful for my children and the life I’ve been blessed with.

At one of my son’s countless numbers of psychology appointments yesterday, I was struck by something the doctor said. “We cannot grow or experience the beauty of things unless we travel out of our comfort zone.” I was immediately speechless (which does not happen often ;)). He was encouraging my son to work on eating fruits and veggies for a more healthy diet but I got MUCH MORE from his statement.

How many times in your life have you dreaded going to this or that event out of the fear of the unknown? Usually what happens is you attend the event and have a wonderful time and are thankful you went to experience something new. In fact, to learn and grow we must all move a bit out of our comfort zone. Think of a baby as he learns to sit up. He has not tried it before and he most likely will fall, yet he knows no fear and tries anyway. Our bodies are hard-wired to try new experiences from the time we are born. This is how we grow and develop new skills that we will build upon for a lifetime. Reflexes gradually disappear and we innately learn to rely on those skills we have acquired. With each success comes confidence to try again, and then we become skilled.

In my book, The Pocket Occupational Therapist, I provide many ways to help children to learn skills needed for daily living. Children with special needs may need a little more encouragement to learn new skills. We need to adapt the activity for them to achieve small successes so that they may build up the confidence to try again and again. It is through this process that skills are learned. When we fail (or our child fails) it is natural for us not to want to repeat the experience. Therefore, it is our job as parents and therapists to help to facilitate successes. However, we cannot truly understand what this means until we take a good look at our own willingness to try new things. Self-evaluation is important to grow and learn. It has been said by Socrates that “the un-examined life is not worth living.” This is quite drastic, yet rings true for us. We should constantly be examining ourselves and our ability to learn from our own experiences and from our children to grow as parents, therapists, teachers.

When we understand that we do not like to fail and sometimes need a little more encouragement to achieve our goals-big or small-we are more likely to succeed. Let’s take a look at ourselves as teachers and step out of our comfort zone. Go for it!
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

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

Oral-Motor Fun

There are many fun ways to incorporate oral-motor “heavy work” into your child’s sensory diet.  The activities you choose should be fun for your child!  The most important consideration is to choose an activity in which your child is SUCCESSFUL and then make it more difficult as his muscles get stronger.  You wouldn’t want to begin your first ever gym session by lifting a 100lb weight!

Here are a few fun things to try:

-use a straw to blow a cotton ball or small pom-pom

-blow bubbles into a dish pan of water with liquid soap.  Watch your little one laugh when the bubbles form in the water as a result of their hard work of blowing!  *Of course, make sure they don’t drink the water 😉

-hold a cotton ball in your hand or place it on the edge of the table and have him blow it off.  Make a silly sound as it falls

-whistles of all sizes are fun, each differently shaped whistle changes the muscles used by the mouth, so be sure to provide a variety of sizes for super great exercise

-sucking on candy canes of different flavors is a super activity during the holidays.  Not only does it provide work for the oral muscles, but it provides many taste experiences.

-use pixi sticks and place their contents around the child’s mouth at different places, allow the child to use only his tongue to lick it off in front of a mirror

-straws of different sizes can be placed into your child’s favorite drinks

**REMEMBER** the smaller the straw, the harder the oral muscles will work to get the air out.  Begin with a larger, straighter straw and work down to a smaller, curvier one.

Post some of your favorites to share.

Let me know how these activities work for your child!  For more information on oral motor, sensory processing, and anything OT related, purchase our book, The Pocket Occupational Therapist.

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. 

PREVIEW(3)Visit our website at www.pocketot.com for more information about OT, FREE handouts and resource  page.  Also click on the link to the right for more information on our store with downloadable handouts, cards, and lessons for children of all abilities!

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