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Ten Therapy Tips For Parents in the Fast Lane

April 18, 2011 in Ask the Occupational Therapist, Featured, Insider Insight by Dr. Tiffany Showalter

Do you ever feel like you live in your car? Are you dashing to soccer practice, ballet classes, and the baseball field while trying to fit in your home program for your child’s fine motor skills?  Well, keeping a few simple items in your car or in your home, you can work with your child on hand strengthening, using both hands together, hand-eye coordination, grasp, and in-hand manipulation. These skills are important building blocks for handwriting, cutting, and other school related fine motor tasks. Try using a large Rubbermaid container with a lid to hold the items to make them easily transportable.
Materials:

  • Large piece of felt
  • Felt letters or shapes
  • Plastic containers with lid, Kool Whip or margarine
  • Plastic jar with screw top lid
  • Jumbo pop beads
  • Bubble wrap
  • Large uncooked macaroni noodles
  • Shoelace
  • 10 pennies
  • 10 clothespins
  • Old magazine

Activities:

  1. Place felt on vertical; for example, back of car seat or attached to wall. Let child make pictures, designs, or words using the felt letters and shapes. Good designs to try include making houses, people, the child’s name, or spell the signs that you pass along the way.
  2. Remove the lids of the plastic containers. Have your child pour macaroni noodles between the two containers, trying not to spill.
  3. Child removes and then replaces clothespins around the edge of the plastic container by pinching/squeezing the pins with their index finger and thumb.
  4. Pull apart and then assemble pop beads.
  5. Pinch bubble wrap between index finger and thumb to make popping sound.
  6. String the macaroni on a shoelace.
  7. Place lid on plastic container. Child picks up pennies on at a time and slides them into slit cut into lid one at a time. Next, have child use only one hand to pick up approximately three pennies, one at a time, while continuing to hold each of them in that one hand. Next, have child place them into the bank one at a time without dropping.
  8. Tear pages out of an old magazine. To make it more difficult, tear out pictures of blue things or things that start with the letter “A”.
  9. Place pennies and macaroni in jar. Remove screw top lid. Have child fish out the pennies or macaroni and place it into the other plastic container, leaving one in the container. If this is too difficult, only place macaroni in the jar and do not sort the items.
  10. Tear strips out of the magazine, scrunch up using one hand, and then toss at the open plastic container to make a basket.

Disclaimer:  I hope you enjoyed reading this article.  Please remember you are reading this information of your own free will and are taking the information at your own risk.  The author is the legal copyright holder of this material it may not be used, reprinted, or published without my written consent.  This information is for entertainment and informational purposes only and is not intended to provide or circumvent medical, legal or other professional advice.

How to make it through Spring Break without tearing your hair out

April 4, 2011 in Ask the Behaviorist, Featured, Insider Insight by Holly M. Adams M.Ed.

If spring break is bearing down on you, you might be thinking 5 more days of school and…THEN WHAT. Perhaps you are worried about the vacation to the beach you have planned with your family, or about the “staycation” you are planning. You and your child might even be using the week off to try some new therapies, or have a medical procedure that requires too much time off from school. Well I am here to tell you all of the above scenarios can be completed seamlessly, yes seamlessly, without meltdowns and tantrums using only a few simple tricks.

Trick number 1

Start talking to them about it NOW. Waiting until the weekend of the big trip does not allow your child enough time to process the information you are giving them.

Trick number 2

Peace comes in the details. If you are prepared, they will be prepared. Make sure you have thought through all of the activities you have planned and that you are taking or have access to all the necessary equipment. You have the ability to stop most anxiety outbursts by planning ahead and sharing the details with your child.

Trick number 3

A calendar can be your best friend. Use a weekly calendar with pictures to show your child what to expect each day. A calendar can also help them count down the days until they can return to school and see their friends.

Trick number 4

A stopwatch or a visual timer will help to make foreign transitions easier. There are a variety of timers that a can be downloaded onto almost any smart phone to help with transitions. ( I recommend Time Timer) Often on vacation, you are doing things that highly preferred and are followed by a non preferred activity. i.e. play in the ocean, then shower. A portable timer will help your child anticipate transitions and cut down on meltdowns.

A vacation is meant to be just that, a break from all the stresses of daily routines and structure. You only need to take a few tools from your daily life to make your vacation life fun and relaxing for everyone.

I have provided a social story to read with your child to prepare them. You can download it in PDF format by clicking here.

The Sensory Under-Responsive Child

February 21, 2011 in Ask the Occupational Therapist, Featured by Susan N. Schriber Orloff, OTR/L

Alex is 6 years old. Unlike his peers he is lethargic, minimally verbally responsive to engagement, has difficulty making eye contact and hesitates entering into gross or fine- motor activities.

He seems shut down as if enshrouded in a fog that limits his ability to interact in his world.

Children like Alex are often under-responsive to tactile, proprioceptive/vestibular input, poor body in space perception and awkward motor abilities both gross and fine. In addition they are easy bullying targets by their classmates due to the above-mentioned characteristics.

They are often unpopular because their motor skills lag behind their peers due to the sensory issues that limit opportunities for learning motor skills.

This under-responsiveness within the vestibular system according to Ayres, can have far-reaching consequences. The neurological connections within the vestibular system reach into the visual system, impacting receptors in the eye, (tracking, reading and visual responsiveness), muscle tone (large and smaller eye muscles as well) and balance (postural security).

These children often have emotional deregulation as well, making them cry more easily and becoming withdrawn. Observed to be sluggish, apathetic, or clumsy social interactions often become painful. It is easy to understand why others might perceive these children to be self-absorbed and inattentive.

In a classroom these children are often the ones who stay in from recess “to finish their work”, when recess is exactly what they need to jump-start their sleeping sensory system.

What can be done to help this child within the occupational therapy setting and as the OT consults to the classroom teacher?

First explain to the teacher that this is an issue of sensory modulation not a behavioral choice on the part of the child. Without getting too technical outline that there are systems that modulate input that are skewed and this child is getting “static” in his interpretation system of incoming stimuli.

For the practicing OT I have briefly outlined (an over simplified) chart to help make this clearer. These descriptions are valid for all sensory irregularities.

CNS SystemFunction
ThalamusActs as a relay between multiple subcortical/sensory organs areas and the cerebral cortex—It is part of the Limbic System
Think “Grand Central Station”
Limbic SystemComplex set of structure that is found on both sides of the Thalamus. Responsible for regulation of emotions. Amygdala (excitation) and the Hypothalamus (calming forces).
Reticular FormationArousal, attention, cardiac reflexes, awareness, motor functions (found in the central core of the brainstem). It creates a pattern of connectivity for convergence and divergence of sensory structures.

This snapshot should help explain why the child looks a particular way and why often-frustrating behaviors are unintentional and need to be addressed by alternative and modified methods.

Classroom suggestions to help teachers address these issues and more effectively teach and reach these sensory under-responsive children (SUR).

BehaviorsSuggestions for classroom teacher
Irregularities with:
• Child seems to be in a continual state of “chaos”
• Language irregularities (expressive)
• Cannot easily elicit rapid fine motor skills
• Slow auditory processing
• Oral apraxia
• Visual spatial dysfunctions
Be structured and present materials in small sections.

Have the child demonstrate what he is to do. Do not expect him to be able to verbalize the process.

Do not rush him, but do give him reasonable time limits.

Actually speak slower. Research has shown that children with auditory processing can synthesize information better when the speaker slows speech by just a few seconds

Present seat work with limited questions on each page.
Irregularities with:
• Impulsiveness
• Obsessive tendencies
• Skewed perspective of situations
• Limited ability to anticipate areas that might need help and/or potential outcomes of a behavior.*
• Labile behavioral reactions*
Provide a lot of structure preferably with 1 or 2-step repetitive processes.

Do not react to the child’s over-reaction, give time to calm and then return him to the task. Do not get into “fair and not fair” discussions.*

Check on his work, he may go off on a tangent and not know he is doing anything wrong.
Irregularities with:
• Endurance
• Abstract reasoning
• Curiosity
• Low persistence with difficult or unfamiliar tasks
• Cognition
• Externalizing and internalizing affect appropriately
Give break times between assignments—this could be walking around the room to collect papers, etc. Just let the child have definite breaks between transitions.

Give him choices within a task so that he has to decide what to do next. Limit choice initially to 2 selections.

Intervene when you see he is “stuck” on a task.

Help him differentiate between what are his thoughts, ideas and feelings and the actions of others. (social skills group could help here).

Remember that the SUR child cannot go “faster”, talk more, transition better, etc. just because he is encouraged to do so. But he can with the right strategies in place.

Susan N. Schriber Orloff, OTR/L, is the author of Learning Re-enabled, a guide for parents, teachers and therapists and Write Incredibly Now™ 12 hours to better handwriting. She is the Executive Director of Children’s Special Services, LLC, in Atlanta, GA. She can be reached on the Web at www.childrens-services.com or through her blog at LDMadeEAsy@blogspot.com. Her WIN™ program is available through YourTherapySource.com.

Keeping Calm During the Holidays

December 15, 2010 in He Said/He Said by Celebrate Calm

How can we create calm in the midst of holiday chaos?

Calm Dad Says: This holiday season, practice self-care. Before throwing yourself into the myriad demands and expectations of the season, take time to settle yourself. When you are calm, you spread that to your family. Otherwise, you’ll feel frazzled and snap at those you love. Think simplicity. Make a list of what’s most meaningful and important. Say no to that which is extraneous. Your job is not to make everyone happy. You are not responsible for creating “the perfect Christmas.” When you focus on controlling yourself and creating calm inside, instead of trying to make everyone else happy, you will spread holiday cheer.

Calm Kid Says: When I am around lots of relatives, it feels suffocating and gets really loud. I get lost in it all and get overwhelmed.  So give your kids downtime and a place where they can be by themselves once in a while. Don’t worry about them being anti-social—we just need a break sometimes away from everyone else.

How do I stay calm when relatives judge me and my kids?

Calm Dad Says:  Instead of being defensive, let’s be proactive and point out all the advantages our kids have. Your sister says, “Wow, she’s quite a handful” which is her way of saying your daughter is hyper and out of control. You reply, “You know what I love about Sarah? She has so much energy and she’s so creative. You can’t believe the play she wrote last week and performed in front of her class. I really feel sorry for the kids who just wait to be told what to do, because Sarah is going to run circles around them in the job market one day!”

The grumpy grandpa smirks, “Does he have a hearing problem because he doesn’t listen?” Your reply? “You know what I love about Jacob? He has initiative, creative ideas and he’s a problem-solver. He’s not going to be some follower in life. Nope, he’s going to be a leader and that’s going to make him really successful.”

Calm Kid Says: I used to feel like such a bad kid compared to my “perfect” cousins. But when my parents started bragging about all my good qualities around family, I started to believe that maybe I did have a great future ahead of me. It felt good to hear my parents believing in me even when others were being negative.

What do kids really want for gifts?

Calm Dad Says: Don’t buy gifts out of guilt or because you think it will make them happy. Otherwise, we’re sending the wrong message and getting kids to equate happiness with presents. But you know thirty minutes after unwrapping the last gift, some kids feel disappointed and bored. Set very clear expectations about the kinds of presents they will and will not get. Focus on giving gifts that help cultivate your child’s natural strengths and passions. Your kids have huge hearts, so spend time serving the needy, buying and wrapping presents for Toys for Tots, and giving to others. That’s where real satisfaction comes.

Calm Kid Says: I think a lot of kids like me aren’t really into stuff; we really prefer experiences. I love doing things with my Dad and Mom, going places and experiencing different activities. Some of my favorite presents were gift certificates or gift cards for things like a ride in a sports car, special dinner with a parent, an hour of free game time, get out of a chore for a day, get out of school for a play day. I loved this time with my parents more than any gift.

Celebrate Calm Founder Kirk Martin and his son, Casey (17), have trained over 100,000 parents, teachers and kids how to control their emotions through their newsletter, radio show and workshops. Sign up for their newsletter, say hi and learn more about their family-friendly programs at www.CelebrateCalm.com.

Great Big Wish List Giveaway: Wild! Science

November 18, 2010 in Giveaways by Admin Dawn

Wild! ScienceThis is a giveaway for the bigger kids: We’re giving away FIVE Hyperlauncher Rocket Ball kits from Wild! Science!

Make your own mass accelerating launch balls and discover the science of elastic collisions. Create almost impossible bouncing ball tricks and much more! Mix and mold a supercharged ‘planet collision’ accelerator which fires a small ‘moon’ into orbit. The kit includes 4 graduated size molds and over 6 activities. 10+ years.

• Make a scientifically calibrated series of explosive release super balls.

• Explore energy transmission, shock and momentum. A Big Force put into a tiny mass = huge acceleration.

People, this is serious science (note the included safety goggles). And it’s also serious fun! The good folks at Wild! Science also have extras for you once you have the kit. You can go here and get additional instructions along with information for teachers or other grown-ups who are into education. You’ll just need the barcode on your kit.

Wild! Science has lots of other terrific science-related toys, too, including an improvement on the traditional ant farm with the Ant-O-Sphere and bringing the science to cosmetics with the Perfect Perfume Lab.

So how do you win?

We looked at this kit and the incredible bouncing balls you can make and we said, “Wow, that totally reminds me of  our kids when they are dealing with changes in their routines!!!” You know, ricocheting off the walls? Lots of pent up energy exploding with incredible force? The need for safety equipment?

Yeah, that’s the holidays at a lot of our homes, isn’t it?

So to enter this giveaway, please go to the Behavior Issues group and comment here, to give us your best tips and dealing with kids who get all shook up when the holidays arrive. I think most of us could use the tips!

Sensory Diet? What’s food got to do with it?

November 3, 2010 in Ask the Occupational Therapist, Insider Insight by Dr. Tiffany Showalter

By: Dr. Tiffany G. Showalter, OTD, OTR/L

It’s not Weight Watchers, Atkins, South Beach or Jenny Craig… Despite what you may have thought, a sensory diet has nothing to do with food, fat, sugar, carbs or counting calories! A sensory diet is, rather, a “diet” of activities and sensory input for your body and neurological system. Just the same way your body needs food evenly spaced throughout the day, so does your body need activities to keep its arousal level optimal.

There are certain types of sensory activities that are similar to eating a “main course” and are very powerful and satisfying. These activities are proprioceptive and vestibular and provide movement, deep-touch pressure, and heavy work. They have the most significant and long-lasting impact on the nervous system. There are other types of activities that may be beneficial, but their impact is not as great. These “sensory snacks,” or “mood makers,” are activities that last for a shorter period of time and generally include mouth, auditory, visual, or smell experiences.

Sensory diets are very powerful tools and should be overseen by an occupational therapist; however as a parent it is essential that you are fully aware of what treatments are available and why they are recommended. So the next time you hear someone say, “sensory diet” rest assured that you can still eat a Twinkie if that’s your thing.

References

Building Bridges Through Sensory Integration, Yack, Aquilla, Sutton (2004)

Disclaimer: I hope you enjoyed reading this article. Please remember you are reading this information of your own free will and are taking the information at your own risk. The author is the legal copyright holder of this material it may not be used, reprinted, or published without my written consent. This information is for entertainment and informational purposes only and is not intended to provide or circumvent medical, legal or other professional advice.

When the leaky faucet won’t turn off: dealing with drooling

November 2, 2010 in Ask the Occupational Therapist, Insider Insight by Dr. Tiffany Showalter

By: Dr. Tiffany G. Showalter, OTD, OTR/L

Drooling occurs as part of natural development in almost all young children, however not every child will stop drooling on their own. Did you know that our mouths are able to produce 2-4 pints of saliva every single day? Now imagine that you are not able to control what happens with all that liquid. Excessive drooling that occurs beyond the “cute” stage can be a real problem. It not only impacts a child socially, but is messy, can lead to dehydration, cause skin breakdown, result in infection, soil people and things nearby, and can smell pretty bad. Most children stop drooling after 18 months or when all of their teeth have come in, but some neuro-typical children will surprisingly continue to drool until they are 4 years old. Drooling is most common in children who suffer from disabilities that impair the nerves or muscles in their throats and mouths. Some examples include Cerebral Palsy, Down Syndrome, head injury, hypotonia, mental retardation, Muscular Dystrophy, seizures, stroke, and/or enlarged tonsils. Many sudden onset illnesses also can cause drooling, so a physician should always be consulted to determine the cause. They may suggest treatments like speech therapy, occupational therapy, biofeedback, medication and/or even surgery.

As I have mentioned, many different conditions can result in the problematic water works, but maybe some specific strategies can tighten the valve if not close it off completely. To understand how to manage it, let’s investigate it further. Saliva is produced around the clock in our mouths to aid in speech by providing moisture to the mouth, eating by moistening food, and digestion by beginning the breakdown of food. Drooling occurs when saliva falls from the mouth as a result of an overproduction of saliva and/or problems controlling that saliva inside the mouth. Researchers have proposed four main reasons this might happen:

  1. Awareness: Some children are not aware that they are losing saliva from their mouth
  2. Frequency of swallow: Some children do not swallow often enough
  3. Efficiency of swallow: Some children do not clear the mouth efficiently when they swallow.
  4. Poor seal formed when lips are closed: Some children maintain an open mouth posture or fail to form a tight seal when closing their mouth

These children may need a little help developing the coordination, awareness, and lip strength/flexibility in order to stop or reduce drooling and I have come across some activities which may help do just that.

First, gather some things you will need:

  • ➢ Straws
  • ➢ Cotton balls
  • ➢ Whistles, horns, kazoos
  • ➢ Lollipops
  • ➢ Chewy, sour tasting candy**
  • ➢ Peanut butter**
  • ➢ Bubble fluid
  • ➢ Dental floss and life saver shaped candy
  • ➢ Most of all PATIENCE!
  1. STRAWS require a child to use lower lip control and develop the facial muscles required to stop drooling. When appropriate, allow the child to drink from a straw, rather than a Sippy cup which can make drooling worse. Make it a fun challenge, like putting pudding or apple sauce in a cup with a straw. Milk shakes work great too. If your child needs help learning to use a straw, try using a juice box. Put the straw in your child’s mouth and squeeze enough to give them a taste of what’s inside.
  2. WHISTLES, HORNS, and KAZOOS are another way for your child to practice the lip control they need to stop drooling. It may not be music to your ears, but the result, a dry child, will make it worthwhile. Some earphones might not be a bad investment for your ears either.
  3. Blow! COTTON BALL races are a great way to help stop drooling and have fun at the same time. Place a cotton ball for each racer on a smooth, flat surface. On your mark! Get set! BLOW!!! It’s a great lip exercise disguised as fun.
  4. BLOWING BUBBLES is another great way to help stop drooling. Again, by practicing lip control, children develop the strength, lip range of motion, and skill required to help with the problem of drooling.
  5. For children without peanut allergies, PEANUT BUTTER can be a great tool. Wipe your child’s lower lip free of drool, and smear a LITTLE (not enough to choke on) peanut butter on your child’s lower lip. The child then licks the peanut butter off the lower lip. As they lift their lip to get all the peanut butter, they will be performing strengthening and range of motion exercises.
  6. Sucking on a LOLLIPOP promotes active lip stretching and lip closure which may reduce drooling.
  7. Chewing is a great activity for those children without swallowing difficulties to increase awareness within the mouth. Add sour flavors for the added POW! Sour flavoring has also been shown to increase the frequency of swallowing as well.
  8. Lace a LIFE SAVER TYPE candy with DENTAL FLOSS. While you hold both ends, place the candy inside the child’s mouth and play “tug-o-war”. Instruct the child to close their lips to keep from losing the piece of candy.

Warning

DROOLING can also be caused by an underlying physical condition, such as enlarged tonsils, or by facial structure. If your child cannot stop drooling, speak to his or her pediatrician. Sometimes the problem requires more intensive medical intervention. Additionally, swallowing difficulties can result in life threatening problems, so always consult a physician to rule out any complications.

Read more

How to Help a Child Stop Drooling | eHow.com

How to Stop Drooling by Pam Marshalla

Disclaimer: I hope you enjoyed reading this article. Please remember you are reading this information of your own free will and are taking the information at your own risk. The author is the legal copyright holder of this material it may not be used, reprinted, or published without my written consent. This information is for entertainment and informational purposes only and is not intended to provide or circumvent medical, legal or other professional advice.

Yoga doesn’t have to be a four letter word

October 13, 2010 in Ask the Occupational Therapist, Insider Insight by Dr. Tiffany Showalter

I will be the first to admit that I am not a fan of yoga.  I remember in OT school learning how to use “alternative” activities to assist patients with life threatening, progressive illnesses.  How through breathing, meditation, and control over your body, one could lessen their pain and help improve their overall function for persons suffering from Cancer for example.

We were actually required to take a brief course every Tuesday and Thursday for an hour during an 8 week period so we too could experience what some of our patients might be doing.  Our instructor was a former physics instructor of mine, Sigfried Blair, who reminded me of Gumby with an afro.  Not the best start, I’ll admit, but I digress.  For three weeks, I remember hearing “clear your mind, breathe, and let your body be one with the movement”.  Those who know me can sympathize that I have never been a “clear your mind type of person” and hearing those words really stressed me out.  I am a multi-tasker and proud to claim my “gift”.

I left each session with a migraine headache and set out to find a way out of there.  I easily obtained a permission slip from a doctor who said my headaches and stress were a direct result of these yoga sessions and for medical reasons I should be excused.  See, you can get a doctor to say about anything!

Last year I attended a continuing education conference entitled, “Motor Coordination Disorders:  Impact on Education” where one of the treatments investigated was using yoga to facilitate motor coordination.  The speaker showed us some cute programs with color coded cards and child friendly activities.  I thought I might give yoga another try.

I have since come to accept that even though yoga is not for me, it is definitely for some of the children I serve.  Yoga teaches children to breathe effectively which can improve concentration, learning, and vocal support.  It can also help with self-regulation.

Moreover, yoga encourages body awareness.  Most yoga programs for children focus on slow controlled body movements which require a body awareness of what the muscles are doing as they practice assuming different postures.  It can also help with strengthening, range of motion, and flexibility.  Finally, yoga may help children learn to grade their movements since many of the poses require children to hold at the midrange.

So, yoga may not be for me, but it might be a great activity for your kids.  Give it a try and let me know how it goes.

Disclaimer:  I hope you enjoyed reading this article.  Please remember you are reading this information of your own free will and are taking the information at your own risk.  The author is the legal copyright holder of this material it may not be used, reprinted, or published without my written consent.  This information is for entertainment and informational purposes only and is not intended to provide or circumvent medical, legal or other professional advice.

What frustrates me?

September 8, 2010 in Ask the Occupational Therapist, Insider Insight by Dr. Tiffany Showalter

As someone who works with children with special needs on a daily basis, I can only imagine how difficult it is to have a child or children at home with these needs. Doing everything you can for your child and keeping sanity in your house must be extremely difficult, resulting in many frustrations of your own. What I want to discuss are my frustrations from the other side, in an attempt to help you as the parent understand where we are coming from.Frustration

1. I enjoy frequent communication with you about your child and enjoy even more trying to help you problem solve an issue your child might be having at home or at school. What frustrates me is when I put forth great effort to help you with suggestions and activities for you to do at home and find out later that you haven’t even tried any of them and are still asking for help.

2. What frustrates me is when a parent expects me to fix their child. You have a wonderful child with both strengths and weaknesses. My role as your child’s therapist is to help your child participate and be successful with completing certain skills that they are having difficulty doing within his/her abilities. It is like the saying; “there is more than one way to get a job done”. In many cases, my job is to find that other way.

3. I know parents are often not experts when it comes to child development and developmental milestones. I can help you there and provide tables. What frustrates me is when you are expecting skills beyond your child’s developmental level. A simple web search can yield what is appropriate or ask me for that information…I am happy to provide you with it.

4. As a parent of one child with another one on the way, I am sure there will be many days when I compare my girls. What frustrates me is when you compare the skills of one child to the next. Even if your children were the same age, had the same abilities and disabilities, and participated in the same programs, there are still countless factors that contribute to your child’s development. It is unfair to compare them.

5. I haven’t had to deal with developmental pediatricians or other medical personnel explaining my child’s diagnosis to me, but what frustrates me is when I have to explain something essential to your child’s prognosis with you when you should have been made aware long before ever meeting me. For example, I have had to explain tone at least 4 times this school year. These were all situations where the children were receiving ongoing medical interventions to address such tone. The parents asked me what we could do to “fix” the tone. I am writing an article on tone itself but in a nut shell here it is. Tone is neurological and can only be permanently “fixed” with surgery or medicines. Various techniques including tendon tapping, casting, icing, vibration, and gentle rocking to mention a few can only temporarily affect tone. More appropriately would be to modify the task that the tone is impacting to increase your child’s success. In two of these four conversations, the parent was brought to tears in learning this information. I think knowledge is power and am happy to provide you with such, but how frustrating that the doctor did not explain this to you. I would cry too.

Just letting off a little steam! I really do love my job!

Disclaimer: I hope you enjoyed reading this article. Please remember you are reading this information of your own free will and are taking the information at your own risk. The author is the legal copyright holder of this material it may not be used, reprinted, or published without my written consent. This information is for entertainment and informational purposes only and is not intended to provide or circumvent medical, legal or other professional advice.

Betty: Learning to be her own advocate

July 25, 2010 in Featured, Future Glimpse by Julia Roberts

While we are preparing for the BlogHer Special Need Mini-Con, we are going to rerun several of our articles that have run over the past 15 months. We’re hear still, so let us know if you need anything.

—–

It is before my son is on dialysis. In fact, it’s before I can fathom that my son will ever be on dialysis. I am sitting in a conference room and listening to a teenager talk about her experience with ARPKD — the same disease that my kids have. She talks about the symptoms and how they make her feel. I listen intently while she explains that in school, she’ll raise her hand and by the time it’s her turn to answer the thought she was going to share is gone. I replayed that conversation over the years as I tried to understand my kids’ kidney failure and the impact on their learning.

Thanks to Betty I understood more. When I asked her to share her story so others could benefit from her experienced she didn’t hesitate. Here’s her story and how she learned to be her own advocate.

My parents got the diagnosis at my birth. I was born without amniotic fluid, with a pneumothorax. As soon as I was born they took me away from my mom and later looked up my symptoms in a medical book and told her that I had ARPKD and I would die within 2 weeks. I’m twenty now and I had my kidney/liver transplant December 12th 2009.

There have been different things throughout my life that I would say have been especially hard. I didn’t feel too different most of the time before I was 13. A lot of the time I looked different than other people because I had an enlarged abdomen. Then when I got sicker it was very hard to not be able to go to school and hang out with friends and go to parties and graduate high school and go to college. I just wanted to do regular teenage things. It was made even harder by people who were jealous that I didn’t come to school sometimes and said I was lucky. They didn’t understand that it wasn’t because I didn’t want to stay home; I just couldn’t make it through the day.

Becoming her own advocate

I’m not sure what my first memory of advocating for myself is but I think I started out by telling nurses things like where or how to take my blood or give me an IV. Little things like that just slowly turned into bigger things — things that would affect my treatment like when I was misdiagnosed. I did research and tried to explain to my doctor what I thought and when he didn’t listen to me I went to a specialist in ARPKD to see if I was right. She said I was and sent my nephrologist a note.

A few times if I had not advocated for myself I would have been seriously injured or could have died.

I think I started advocating for myself because I saw my mom do it so often. She wasn’t like one of the parents that just sits there and listens to the doctors without ever trying to learn or question them; she always tried to do what was best for me no matter what. She also always supported me. It was easy to advocate for myself when I always had someone who would believe me and advocate for what I wanted when people weren’t listening.

Making her way in school

For school, I tried as hard as I could for as long as I could. For all three years I was in high school I had trouble going a full day. In the second semester of my third year the biomedical academy kicked me out for having an incomplete in AP US History because I was absent. The school had been trying to make me go to home bound until I turned 17 . By then so I felt no use pushing myself too much at school.

I finished out the year in home bound but decided that even it was too hard at that point, especially because I still had to go up to school to cram physics and take all the quizzes and exam. After that I decided I would just get my GED. My parents were completely supportive of my decision. It seemed like a waste of time to go back to high school after all my friends had graduated since I had such a low GPA from all of the incompletes in my classes. So one of the counselors from my high school and I decided that I was going to get my GED and then go to college.

Invisible disability

Nobody really treated me like I was sick because most people couldn’t really see that I was. They treated me differently because I couldn’t come to school all the time and so I wasn’t reliable for things like group projects. Most of them also didn’t get close to me because they didn’t see me every day like all their other peers. The ones that knew I was sick were my friends. Those few real friends treated me just the same.

My recovery seems never ending to me. My scars are completely healed now and my encephalopathy is getting better every day. My balance came back just a few days after my transplant but my memory, concentration, reading, etc. are getting better still. I am still trying to get my strength and stamina back, but there is a huge difference in what I can do now and what I could do before transplant.

The hardest things in my recovery have been medicine related. I gained a bunch of weight and acne from the Prednisone and I had to take a lot more Prednisone than the average transplant patient since my liver rejected twice a month after my transplant from not having the brand name of another immunosupressant.

“I plan to be a doctor”

My future plans are to get as healthy as I can. I want to get my driver’s licence and GED and then go on to college. I plan to be a doctor. I want be a nephrologist and a hepatologist that specializes in ARPKD. I really think that I could identify with and help other people with my disease and educate other doctors further on it. I would really just like to live my life to the fullest now and enjoy it since I have gotten it now.

For both parents and teens I would really say that educating yourself on your kid’s or your own medical problems is one of the best things you can do. It is easier — and people take you much more seriously — when you have an idea of what your talking about.

You need to think about what the best thing is in the long run after you educate yourself. Think about the past experiences that you have had and if anything like that is happening or applies in the current situation.

I’m not sure what my parents did differently from other peoples parents, but some of the people with my disease that I know just wanted their medical problems to go away so badly that they ignored them and that lead to greater problems. I’m not sure what else I can say for the parents to do besides just supporting their kids. Everyone is different and some people just have an easier time with medical things and advocating.

Advice to other teens

For teens having challenges, my biggest challenge besides just being seriously ill in general was getting depressed from constantly not being able to do things and feeling bad and feeling like it was all never ending. What really helped me with all that was surrounding myself with people and activities. I would go to book clubs and women’s groups and youth groups and girl scouts and games nights with people.

If my friends were doing things I couldn’t do, I would hang out with adults instead. Most adults were able to treat me normally and I was able to relax and have fun that I could handle. It all really helped a lot. Reading books about similar situations, talking to people with my illness or other illnesses and their families, talking to people who had similar experiences and were now doing better, were all helpful things I tried to do.

-Betty Foreman (ARPKD/CHF, kidney/liver transplant Dec ’09)

Do you have any thoughts to share with Betty? Comment here and we will forward them on to her!

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