We Are MOVING!

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Please follow us….we’re on the move!

Hello and Happy Spring to our faithful followers!

I have decided to move The Pocket Occupational Therapist blog to the BLOGGER network.  Here’s the link to the new blogsite.  Thank you for helping us to spread the word!!

http://thepocketot.blogspot.com/

Cara

 

You CAN do this and we’re here to help.

Supporting, advocating, parenting…..from handwriting to hair washing, The Pocket Occupational Therapist……THE book for caregivers raising children with autism, SPD, and special needs. Filled with Out of the POCKET Ideas and answers to YOUR most frequently asked questions about raising a child with special needs.

Coming in May….The SCHOOL Survival Guide for Children with Autism, SPD, and Special Needs.

By- Cara Koscinski MOT, OTR/L

 

 

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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

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

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

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

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 

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!