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