Posts tagged ‘parenting’
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!!
Tips for Preparing For School
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. Life is much like this-transitions are always approaching and some are easy while some aren’t.
Never fear! Here are 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!!
PS: Don’t forget about our new book, “The Pocket Occupational Therapist” due out in the UK in November and the US in December 2012!! Visit Jessica Kingsley Publisher’s site at http://www.jkp.com/catalogue/book/9781849059329, or www.pocketoccupationaltherapist.com for more information.
What is a “stim” or stimulatory behavior in autism?
We have heard of “stims” or stimulatory behaviors in children with autism. It is one of the signs doctors look for in making a diganosis of autism. Stereotypic or stimulatory behaviors include rocking, flapping, making noises, picking, rocking, or spinning. In fact, we all have behaviors that are considered stimulatory. What do you do when you are in a stressful situation to calm yourself down? Some people twirl their hair, chew their fingernails, or tap their fingers on the table. So, everyone has some behavior that is calming. So, what is the difference between you and a person with autism? The ability to determine the “social acceptability,” duration, and timing of the behavior is the key. In a meeting when you are stressed it is not appropriate to flap your hands wildly, twirl around, or make clicking or humming noises. You have learned that biting your fingernails or bouncing your leg is an acceptable way to deal with stress. Chewing gum or ice is another acceptable way to self-soothe in public.
Most people with autism also have some form of sensory processing disorder. This means that everyday noises, sights, smells, movements, and actions may cause a stress, fear, or un-expected reaction. The noise of a dog bark may sound like nails on a chalkboard. So, that person may need to engage in a stimulatory behavior in order to calm himself down. The “stim” is a way of soothing in a stressful situation, controlling negative emotions, or dealing with anxiety, anger or fear. So, when someone is hyper(over) sensitive to everyday situations, sounds, sights, etc. he needs to engage in more stimulatory behaviors to help calm himself down. It’s like a cycle.
When do we “break” the cycle? Personally, I think that our society makes rules that are difficult to follow. Why is it more acceptable to chew on your fingernail than to flap your hands? At what point is it no longer cute for a child to spin around in public? Someone, somewhere is constantly judging your actions and it’s that mold that we have to fit into that causes more stress. My older son makes noises with his mouth and flaps and tightens his hands in private only. We have taught him that it is inappropriate to do so in public. When he is stressed in a situation, he knows to go into a bathroom or away from eyesight of other people and stim until he’s calmed down.
This is much more difficult to teach children who have more severe forms of autism. When they may rock and flap, they get the staredown from people. I think this is sad. With autism on the rise, maybe the ones who rock and flap will outnumber those who don’t! Can you imagine???? Everyone else flapping around staring at YOU because you are the one standing still chewing your gum and biting your fingernails………….thoughts?
Thank you for traveling down the Route2Greatness with us! www.route2greatness.com
Sensory and Fine Motor Activities for EASTER….
Dear Readers,
As I hopped down the aisles of the stores this Easter season, I found some egg-citing ideas for our kids with sensory processing disorder. As I filled my basket to the brim, I thought I’d share some ideas for your little bunnies.
Straws of all shapes and colors are found in the spring aisles. Look for the straws that are “twisty” and shaped into all kinds of fun things. Ask you child to use them while drinking or put a few drops of liquid soap into a shoe box tupperware filled with water, and have him blow into the straw to make bubbles in the water! Also on shelves now are different scented liquid bubbles, soaps, and colored bubbles.
Use the boxes of Easter or spring themed stickers to make a scene for your Easter party. Make a sign out of the stickers and poster board to welcome the Easter bunny and your family to the Easter meal. The paper grass is fun to make by cutting small strips of construction paper and then glueing them to the sign or laying them into a basket as a filler. All GREAT fine motor coordination boosters.
Crumble up small 2 inch by 2 inch squares of colorful tissue paper and have your child roll them into small balls. Glue the balls into patterns on a construction paper egg to make fun creations. You can trace and cut a paper chick out and use yellow tissue paper to make the chick’s downy coat. Cotton balls can be glued to a paper cut out rabbit. Just find a pattern for any Easter themed item and cut it out of construction paper….the ideas are limitless and your child’s fingers will get a fun workout without her even realizing it!
Whistles of all shapes and sizes seem to appear in the Easter aisles. (Of course, be sure to check the age on the package.) There are many different bunny, chick, and bird whistles in multi-packages. Add them to a shoebox that’s made of plastic and make an oral-motor bin filled with all kinds of whistles. Around the holidays, stores seem to sell whistles that match the season. You can have quite a collection for great oral-motor fun!
Pipe cleaners can be formed to hold items such as candy. It’s fun to see if you can make different Easter themed shapes together out of colored pipe cleaners.
You can wrap colorful crochet string around a balloon and then dip it into starch. Be sure to wrap it in all directions, leaving only small spaces to give it stability later on. When it’s dry, pop the balloon and you have a cool, egg-shaped design! The starch is messy and you’ll have to dip and roll the balloon covered with string until it’s saturated. Let dry in a pan (12-24 hours) and then after it’s dry, cut out an oval in the front and center. Fill with Easter grass and you have a cool basket shaped like an egg! This activity is fun but very messy. It may be great to do this craft together and not focus on how messy your child’s hands get.
Paper plates can be used for a bunny’s face and you can glue bunny ears onto the top! Use crayons or markers to decorate your bunny’s face. Use pieces of felt to glue on eyes, nose and mouth!
Have more ideas? Share with us….. HAPPY EASTER!! Thanks for hopping down the Route2Greatness with us!!
What is Sensory Integration?
What is SI or Sensory Integration?
The first step to learning how to help your child is to get a better understanding of what’s really going on. The way each of us views the world we live in is totally subjective. Every opinion, reaction, or idea we have is based on our experiences in life. We have several senses that help us to learn about our world. The five most known senses are: touch, taste, hearing, smelling, and seeing. However, there are additional senses that most of us forget about or aren’t even aware that we have.
Proprioception Is a sense that uses receptors on nerve endings found in muscles, tendons, the inner ear, and in joints that relay information about our body position and movement in space. These proprioceptors detect subtle changes in movement, position, tension, and force within the body and allow muscles to contract quickly and help protect us from injury. Here’s an example of proprioception in use: You wake up in the middle of the night and walk to the bathroom. How did you know where your body was in space when it was dark?
Vestibular The vestibular system is believed to be the single most important sense we have as it affects each and every area of our ability to function in everyday life. It’s center is in the inner ear and it involved the visual, auditory, and movement receptors. If you’ve ever had an ear infection that affected your balance, than you know the importance of the vestibular system. If there is a problem with this system, results may be extremely disruptive to our bodies-headaches, nausea. The vestibular system controls our balance and movement. In fact, we can think of this as: Am I moving? Is something around me moving? Is something I’m on moving? Spin around in circles for a minute and try to walk a straight line! Another example: You are sitting on a boat in rough water. Close your eyes and you feel your body moving about with the boat. How did you know you were moving? It was your vestibular system telling you!
Tactile I mentioned touch above, but want to give you a little more information. The tactile sytem involves recognizing temperature, pressure, hard/soft. If you walk into a dark room, you need to find the light switch. You know to feel for a rectangle that’s smooth and hard. You know that it has a smaller switch in the middle of the switchplate. Your hand finds it by feeling for it along the wall. Example: You walk in the park, you feel a light tap on your shoulder. You immediately turn around to determine the source. OR You walk in the park, someone accidentally crashes into you while texting and running. You feel the impact and judge it accordingly.
When senses develop correctly, our bodies are able to take information in, process them through our nervous systems, and react to them. We touch a hot stove accidentally, we seemlessly and quickly remove our finger. We didn’t think about how we were going to do it, it just happened. Our sensory system is much like a computer. It takes in information, processes it, and gives our bodies a job to do or an output.
What happens when things go wrong? More posts to come….
My child chews on EVERYTHING!! Help Me
Thare 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.
Let me know how these activities work for your child!
Post some of your favorites to share.
The Power of a VISUAL..Happy New Year!
Few things excite us and cause a feeling of starting new and fresh like New Years holiday. It signifies a new beginning. The visual image of the ball dropping on midnight is so powerful that people make resolutions to make actual changes to their lives. Imagine that! What’s the actual difference between today and tomorrow, nothing. We aren’t different, our lives aren’t different. We don’t see the time changing in reality…..BUT……the visual symbol of the ball and the change in the calendar carries real POWER.
I encourage you to examine your own reactions to the New Year-wheather they are positive or negative. Then, look at your child who is a visual learner. WoW! The visual stories that you can create to help your child have the potential to create REAL change to their daily lives. Giving a visual along with your verbal praises, directions, and emotions can be a great help! The visual image you assign can help your child immensely. I have made a great many social stories for clients (and my own children) and have seen big changes in their ability to transition and complete activities of daily living with greater ease. We all need visuals from time to time and don’t think much about them in our own lives. We all experience the changes that come with New Year’s Day and I’m hoping that you take a minute out of that day to reflect on your child and the potential you have to make a positive difference in his/her life!
Happy VISUAL New Year to All!
Wishing you many blessings in 2012……..from your friends at Route2Greatness.
Resources/Fact Sheets
BJU press has a super list of Fact Sheets with helpful statistics and information for parents, professionals, and teachers. Many different diagnoses are listed.
http://www.bjupresshomeschool.com/content/special-education-document-resources
Welcome to Route2Greatness! 