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

Looking at TOYS through a therapist’s eyes!

Pocket OT- TOYSChildren of all ages learn skills through engaging in play. After all, when children are not asleep they are learning about their environment through various play activities during their day. They enjoy diving hands first into play experiences! Completing the tasks of building blocks, working a puzzle, and drawing pictures will yield skills that the child will use throughout his lifetime. Occupational therapists are fortunate enough to be a critical part of the treatment team for children with special needs. We have developed a specialty called “activity analysis.” This means we work by looking at how an activity is broken down into smaller steps. Therapists who work with children have become experts in looking at different games and toys to determine which skills a child needs to complete them. When the therapist finds a weakness in a particular skill, we can “prescribe” different games or toys to help improve the skill. It is a fun job to have, indeed!
Children are wired to use their senses to develop skills during play. A toy that gives the child something interesting that involves more than one sense will automatically be more enjoyable to him. More pathways to brain development are opened and used. Here is a list of things therapists look at when evaluating a toy:

fbpocketotresized-copy.pngOut of the POCKET Ideas!

• What does the toy feel like? What is the texture-soft, smooth, rough, hard?
• Does the toy have a scent to it? For example, certain dolls smell like fruits.
• Is the toy colorful? Are the colors bright and bold or pastel and dull?
• Does the child need both hands to manipulate the toy?
• Does the child need to read or recognize letters and numbers to enjoy the toy?
• Is there a lot of figure-ground information? Examples of toys where the ability to
determine what is in the front or background would be mazes, Eye Spy, Puzzles.
• Does the toy make noise?
• Is it a “social” toy? Like a doll house or card games.
• Does the toy require long periods of attention? Board Games
• Does the toy move, vibrate, or shake?

The list above contains a few areas we look at when examining a particular toy. Here’s an example of an analysis of a toy: A child receives a game of Hi Ho Cheery-O. He needs to be able to sit on floor or table for at least 10 minutes to play the game (control of his body) (attention); must be able to refrain from placing the small cherry manipulative into his mouth (impulse control) (age-appropriate mouthing), be able to count (number/cognitive (thinking) skills); be willing to interact with another player (social skills); be able to pick up and place the small cherries into the bucket (fine motor/coordination); be able to place the cherries into the correct colored bucket (color recognition); and be willing to accept that he may win or lose the game. Everyone knows that there are ages listed on most games, but they don’t think much about what skills are necessary and at what age those skills develop.

Remember to think about your child’s developmental age and not her ACTUAL age. For example, she may be 7 but her speech, fine motor skills, and thinking may be delayed by two years. Toys should be purchased for an 5 year old, then and not a 7 year old. Make sure that the toy is not too easy for her or she will become bored with it. I would encourage you to review the tips above and take your child on a fun visit to the toy store to see what interests her. Teacher supply stores are also full of ecuational treasures. Therapy catalogues and on-line stores such as FunandFunction offer wonderful toys in a way that’s easily searched and at reasonable prices.

Need helpful handouts?  The Pocket Occupational Therapist offers helpful FREE and for a fee handouts and webinars for you!  Also, we are having a SALE on our store items including our best-selling CDs for children who fear loud noises.  You can now purchase individual tracks, such as Fire Alarm and Thunder!  Enter 7EW6M8S9 for 20% off of your order and feel free to share.

It’s important for our children to be successful with a toy to build their confidence for learning newer, more difficult skills!

HAPPY SHOPPING!

~Cara
By- Cara Koscinski MOT, OTR/L

Mom to two children with SPD and autism. 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

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

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

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

Sounds and feelings

ChewPocketOTPromoImagine the sound of your mother’s voice.

What memories/emotions does the sound of popping popcorn bring?

Think of the sound of nails on a chalkboard. How about the sound of a bee buzzing near your  head?

Each sound evokes feelings within us.  Sounds are more than just noise.  Human beings make sense of our world from sound.  In fact, there are nerves in our ears which are connected to areas in our brains which involve memory, emotion, fear, and our basic alertness levels (among many others).  This is why we form feelings that are attached to sounds we hear.  What I find truly amazing is that our body remembers sounds to help us to determine if something is safe or dangerous and then our body reacts in response.  When the auditory system develops appropriately, we learn to make responses that fit the sounds we hear.

Remember that children with autism and with sensory integration/processing dysfunctions can have difficulty with forming a response to something that they sense.  When children hear sounds, they form an association.  For most of our children with hearing sensitivity, a loud sound they have heard in the past may have produced a fear reaction or, “fight or flight” response.  These sounds are now perceived as dangerous to them.  So many of my clients fear fire alarms because they are loud and unpredictable.  They have difficulty realizing that the fire alarm is meant to protect them.  In fact, for years my own son was so afraid of the fire alarm in hotels that we had to look in the room before actually booking it so that he could see the type of fire alarm being used.  This is not at all practical!  We simply had no idea how to help him.  The same can be said for any sound that may elicit an inappropriate reaction in our children.  We must try to work with them via a social story, empathy, and understanding to create a new or more positive memory of sound.

-It is always wonderful to do a Google search of pictures of fire alarms (or whatever it is that is making the targeted sound).  Print, glue, or draw pictures in the social story and review it often so that your child will be prepared.

-Several forms of earplugs and noise cancelling headphones are available on the internet.

-Encourage your child to list sounds that cause him to be afraid.  Make a plan for each sound.  For example, when he hears a siren, he can cover his ears, count to ten and take deep breaths.  Practicing in advance will help to give him confidence and lessen anxiety.

-Work with your child’s therapist to form strategies.  Fun CDs like Sound-Eaze and School Eaze are available on Amazon. The CDs have sounds set to gentle rhythm and vocals to help make sounds more tolerable. They are not part of any listening program and are a therapeutic tool.

-Therapeutic brushing and sensory activity diets can also help children to maintain regulation.

-Formal programs such as Therapeutic Listening may be used by occupational therapists to help integrate the sensory system.

Remember that not everyone is going to tolerate loud sounds. Many people simply need to avoid them when possible.

Please share your stories of fear of sound and what techniques you’ve used.

By- Cara Koscinki MOT, OTR/L 

Mom to two children with SPD and autism.  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