Tag Archives: therapy

Imperial River with FWF

We were blessed yet again to have the wonderful not-for-profit Freedom Waters Foundation

Whispering Pines Clydesdales

Another special needs mom I know through Lee Schools: Parents As Mentors encouraged me to invite an amazing gentleman and his organization to visit Riley’s Functional Skills classroom.   I am grateful that she did.   Ken Craft kindly brought Tally of Whispering Pines Clydesdales to visit the five ESE classes of Rayma C. Page Elementary.  It was an amazing morning as I watched each childs’ elation grow with the interaction Tally afforded.

>A Long & Rainy Weekend

>The boys had a long weekend.  We filled our time very well.  They even got to make an Arbonne sales call with me, my customer was so sweet to let me bring them along.

The house begins to look like Halloween with Ronan’s homemade decorations.  When he was just old enough to hold a crayon, we would create homemade crafts and art to decorate for each holiday.  I am not creative so I usually turn to the internet for inspiration.  I was out for a little while and returned home to find John and the boys immersed in Halloween decorating activities.  Now, Ronan begins the process without prompting and creations I would never have imagined adorn our home.  Below is the first of the planned flying bat, ghost and jack-o-lantern.

Window stickies compliments of Miss Donna.

Lots of therapy for Riley to Dr. Steve Stohler’s new chiropractic office location.  We are so fortunate to have Dr. Steve give his time and expertise to keeping Riley healthy.  One day soon I will share our introduction to Dr. Steve.  Then on to horseback riding at Naples Equestrian Challenge.  For the 3rd session in a row Riley performed beautifully, working hard without even being asked to push up and sit up, smiling all the while.  He does appear to perform better on the cooler, rainy days.  No pictures again… I was busy being Riley’s sidewalker.

My mother has returned from up North.  We are all glad to have her back.  Ronan brought back another tradition the moment she returned… games.  We may all be a little gamed out after quite a bit of Monopoly Junior and Rummicub which he expects to play again this evening, I suspect the day will be full enough.  I’m glad he enjoys that time together:-)

Today he has Physical Therapy and later a school conference.

When I wonder where my time goes and how I accomplish not nearly as much as intended, I can look back and remember how these moments ate up my time.  I do need to get life on track.  But, all this care for Riley is invaluable to our future.  The healthier Riley is… the healthier our family is… it’s worth every moment.  Admittedly though, I am quite challenged to put it all in perspective and time budgeted.

So, how do you all balance the needs of your special child with health care and educational needs which dominate the family life?

It is ADHD Awareness Week.  Here is a link to the current CHADD (Children and Adults with Attention Deficit Disorder) newsletter with helpful articles.

We are all special.. by Stacie Wiesenbaugh

Riley Met A Goal!

“Riley met a goal!” Miss Emily announced when we arrived for Physical Therapy at All Children’s Monday afternoon.  Now this is a statement that I am rather unfamiliar with hearing.

Every movement Riley makes takes incredible effort.  In the past year, John and I have marveled at his new skill: Riley at the age of eight learned to lift his left arm up to his face and with the back of his wrist rub his own eyes.  Now, depending on your experiences this is either the one of the saddest skills you have ever heard or you are at this moment incredibly jealous that my child can now rub his own eyes when they itch.  What is life like if you cannot do this for yourself.

If you can relate to this being an amazing milestone, you understand the difficulty of meeting therapy goals in order to qualify to keep therapy.  Our goal will not keep us in therapy.  But our goal does show that Riley is working and working hard to improve his abilities.

Are you ready?  Here it is.  While maintaining a weight bearing position on his elbows, Riley held is head up without help for 10 seconds.  10 Seconds!  It’s a beautiful moment to see my child improve and become stronger.

Next, we get to maintain this ability.  So much work to do.

To do all he does, Riley is Superman.

We are all special… by Stacie Wiesenbaugh

Today’s Inspirational Post is at kidz – I Know Different.  Please check it out.

Please visit my fellow blogger at It’s Just Lifefor Comments for A Cause for October

  • For every comment on any post during October I will donate 50 cents to UNICEF!

Reconnecting – Guest Post By Donna Lee

This morning we remembered my good friend’s husband with a memorial brunch.  His good nature and smile is always in our memories. His 2 sons, Ben and Dor are the images of their dad. It was a pleasure to see the boys and their cousins, who grew up with and my youngest son, Dan. Barak, a cousin, 19 years of age, was present too and his beautiful smile filled the room with joy.
I met Barak when he was 6 months old (if my memory is correct).  Hehas cerebral palsy, which affected his vision as well.  He was one of our early intervention children at Beit Izzy Shapiro.  I cared for him on land but also had the privilege to teach him to swim, once the pool was built and I joined the hydrotherapy team (aquatherapy). Today he is a young man and has avery busy schedule. As well as attending school, he belongs to many clubs and activities, like extreme sports summer camp, and a teens group that have weekly meetings.
Barak has a new computer which assists him in communicating.  One of his compositions was posted in the newspaper (see photo). Each symbol represents a word, which isautomatically printed under the picture. Barak describes his friends from school, tells about his new computer, teachers and the music he especially likes to listen to. 
I am looking forward to visiting him and conversing with him more, with use of hishi-tech computer.  As well as dancing with him and his friends at the beach party.
Shabbat Shalom,
donna lee

A Moment to Breathe

My greatest challenge is simply the constancy of being a special needs mom.

John, my husband, would prefer that I not use that term, “special needs.”  Everyone has their issues and he is correct.  I see this one issue as unique and something which should certainly be address.  We have one special needs child and one typically developing child… there is definitely a difference in raising the two.  For instance, Ronan, the typical child, is out at a Pokemon Tournament with “Kappy” (my mom Kathy).  John is fossil diving  in preparation for a presentation tomorrow morning at The Village School.  Riley is naturally right beside me.
Riley has been right beside me all day and all night.  He requires constant vigilance.  Even as I write this post I am half aware of my task while I watch and listen to his every breath.  He is working very hard in his stander, because as you may remember that is very important for his well being.  This is however, my moment to breathe as he is not actually in my arms at this moment nor am I holding his hand while he sits beside me.  Only recently have I gained these precious moments and I remember all too well what it is like to exist without them.  We have come very far… especially Riley and I am proud of his amazing achievement to be able to process and live in this challenging world.
There will be more on this… I am not really certain how to communicate this constant alertness.  Fortunately, as I mentioned before, this is a blog and I have time.   Though I was kind of looking forward to the end of the world yesterday… oh well, guess we keep on going!  Perhaps there is another parent out there who knows how to explain this who may be willing to share?
Better go now… he has been in that stander long enough and must be quite thirsty by now!
We are all special… by Stacie Wiesenbaugh

Tender Foot Meet Orthotic

 

Bony little feet sounds like something we all may want.  If you happen to not walk, does it really matter?  Riley and I are discovering that yes, it does matter.  It matters because of the great benefit of standing.  Without use in the early years of life, the foot develops without strength, size and flexibility.  Several months ago, I debated the reasons for Riley to continue wearing “AFOs” (Ankle Foot Orthosis).  Previously I had mentioned the tender skin on Riley’s feet.  Since he never stands or walks, he has no calluses upon his feet.  Without any callous any footwear rubbed and his skin was quickly breaking down.  This situation is naturally unacceptable.  After going back and forth many times and trying to adjust these devices to not cause injury, I was pretty much done with AFOs.
Now I send Riley to school sans shoes.  Yep, aren’t I the “crazy woman” asking for trouble.  Challenge me on that would you.  Most everyone respects my choice… or should I say has remained silent.  Who is really going to argue that this sweet child in the chair must have foot coverings?  School or not.  Well, challenge I get, because he does need support so as not to collapse in stander.  Standers are so very important.  So, the school PT has her priorities and I have mine.  Back to AFOs again.  But this time she arranged for an Orthotist to see Riley at school.  Relief!  No making an appointment.  No loading the wheelchair and Riley, no long drive, no long fitting, reload, going again to pick them up… on and on.  The Orthotist came to school.  What a great way to go.  Why didn’t we do this the first time around?
We are all special… by Stacie Wiesenbaugh

A page from EasyStand.com

Health Benefits of Standing

Individuals who rely on a wheelchair for mobility should also look to a standing device or standing frame as a way prevent the secondary complications that often result from prolonged use of a wheelchair. For years physicians and therapists have recommended assisted standing for a variety of medical and health benefits that occur when maintaining a natural standing posture. However; in addition to the physiological health benefits, many people also experience significant psychological benefits from being in the upright standing position, such as improved self-esteem and social development.
Many of these health and physiological benefits of standing are listed below. Or you can review any of the clinical case studies, articles, and research studies found on additional pages for further assisted standing benefits and information.
Medical Benefits of Standing
Passive standing has been demonstrated to prevent, reverse, or improve many of the adverse effects of prolonged immobilization.
The most widely accepted medical benefits of standing include:

  1. Prevention of contractures (ankles, knees, and hips)
  2. Improvement of range of motion (spine, hips, knees and ankles)
  3. Reduction in spasticity
  4. Prevention or reversal of osteoporosis and resultant hypercalciuria
  5. Improvement of renal function, drainage of the urinary tract, and reduction in urinary calculi
  6. Prevention of pressure ulcers through changing positions
  7. Improvement in circulation as it related to orthostatic hypotension
  8. Improvement in bowel function
  9. Normalization of respiratory function
  10. Improve Hip Integrity
  11. Develop or improve motor skills
  12. Maintain or re-gain bone density

Other specific reasons that people stand include:

  • Facilitation of a natural symmetrical standing posture
  • Development & improvement of upper body balance & strength
  • Alleviation of pain caused by prolonged or inappropriate position
  • Development of standing tolerance & endurance
  • Lessening progressive scoliosis
  • Assisting with skeletal development (in children)

Psychological Benefits of Standing
Although funding sources rarely recognize the psychological benefits of standing, they can be some of the most important reasons to stand, especially for kids. Clinicians, parents, and EasyStand users also recommend standing for the psychological benefits, including:

  • Stimulate play
  • Increase independence & self-image
  • Being active and mobile while standing
  • Be more alert
  • Increase cognition
  • Enhance social development & interactions with peers
  • Participate in activities that are meant to do standing up
  • Increase activities of daily living
  • Be more vocal & responsive
  • Look peers in the eye
  • Give & get hugs easier
  • Encourage inclusion in school
  • Decrease fatigue from inactivity
  • Help prevent depression

Tender Foot

Physical Therapy has returned!
Most children with multiple disabilities see their therapies come and go over the years.  There is a variety of reasons why this happens.  To mention a few that I understand: insurance/Medicaid budgets and changes, caregivers should learn therapy throughout the course of sessions and learn to continue the therapy independently, and a very large demand on the therapy resources.  The reason that usually ends the course of therapy for Riley: he cannot demonstrate measurable improvement on an ongoing basis.
As a mother and caregiver it does help to return for a refresher course of my own.  Yesterday, the lovely Miss Emily reminded me to pay more attention to Riley’s feet.  Oh, those poor little tense feet.  In actuality, it is quite easy to give attention to Riley’s feet.  He sits in my lap and they are an easy reach.  are also amazing.  Since Riley does not use his feet, they are amazingly soft.  Unfortunately, they are also very tense… his toes are always curling… a little more all the time especially after tonic posturing.  They do not receive the input and pressure from general use and it shows in the narrowness and lack of callous.  He can barely where shoes because in no time the pressure points will begin to break down.  Generally I simply move them around and stretch out his toes.  Yes, reminders are always a good idea.
There are quite a few demonstrations online.  It really does not seem to need anything so complicated as I am finding.  Any few moments available will do.  As I remember it…. being no expert, just a caregiver needing to apply useful information.  Begin at the bottom of the heel with your thumb.  Apply a little pressure moving upward along each tendon.  Continue on to lengthen the toes and gently stretch each toe back without reaching the point of overstretching.  Next put your thumb under one of the long bones in the foot and the index finger above the same bone and gently wiggle it up and down.  One at a time repeat this with each of the long bones.   Another helpful move is to move the whole foot back and forth from the ankle only as far as remains comfortable.  Over time, more motility will be gained here.  Foot rotations and gentle toe pressure is also welcome.
More suggestions welcome!  Stacie Wiesenbaugh

Gunk and Change

“Gunk and Change” feels most appropriate to my past week.  However, to “maintain” is often the goal here. 
Maintain: Maintain Riley’s health, maintain Riley’s schedule, maintain Riley’s meds, maintain a healthy environment, maintain Riley’s flexibility… these and more take much of our time and energy.
Change:  Change this week has been a little sad.  Many, many wonderful individuals enter our lives through Riley.  This week we say goodbye to two of them.  Goodbye to Riley’s PCS from Hope Hospice, Miss Sandy. She is moving on to try new things in life.  We wish her every success and are proud of her for taking this leap!  Goodbye to Miss Krystal.  Riley’s substitute bus driver stands out as the most caring driver (not to say the only caring driver:-) we have ever experienced and the only one to actually “maintain” and have repairs (that have existed there for years!) made on #27126. 
Gunk: Yep, there’s plenty of gunk around here, however I’ve just discovered a necessary gunk.  We returned to Physical Therapy with an eval this week with the adorable Miss Emily and her latest FGCU intern.  She recommended I stop by The DME Shoppe on the way home for address our wheelchair issues.  What a great reception to drop in unexpectedly to a shop where I haven’t been in months and immediately hear from Miss Jessica “Hi Stacie, how are you?  I’ll get your notes about the head rest for Riley.”  They know they’re customers.  Marcie came out to greet Riley immediately and make adjustments to his chair.  Checking over my last email, she knew all the issues.  A spray was applied to the runners and already the chair moved smoothly.  “What is that?” “Gunk.”  Thanks, I’m thinking, how do I know what to buy in future?  Turns out, it was really called “Gunk.”  Well, now I actually need “gunk.”
I would really like to hear you all share your “change.” Please feel free to comment or send a story for a Post.  My audience button tells me some of are from China, Indonesia, New Zealand, Hungary, Israel, UK, France, Japan (Aki?), Canada, The Netherlands and Romania (that better be Claudia:-)).  Your special needs experience must be so very different from ours… please do consider sharing!

 The boys on Saturday with Debra Frenkel of Freedom Waters Foundation.

 Yesterday aboard a replica of The Nina at Tin City, Naples.
Hurry and visit, this season’s market ends with April.

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