Wednesday, May 21, 2014

Needs Versus Wants When You Have a Child with Special Needs

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We've all heard from time to time... you must separate your needs from your wants.   Usually this speech is given by well intentioned people trying to make you feel better about something you want that you just can't have.   But what if you have a child with special needs?  Separating needs from wants isn't as easy as people think it is.   We're all familiar with those people who live above their means.   Those who think that they need a 9 bedroom 6 bathroom house with only 1 occupant or need a new car yearly.   And then wind up complaining when they can't pay their mortgage and their car is repossessed.  In general we do live in a society that constantly has the need to always have more and more, never satisfied and content with having their needs met.  Yet do we really care all that much if someone has the ability to financially pay for their wants?  No, not so much.  We only want to point the finger in judgment if we think a person should only focus on their needs  when their wants have landed them in a financial predicament.

So naturally the assumption is special needs parents must be living above their means, especially if they cannot separate needs from wants.   Let's just take a look at some of these theories that have evolved:

I've honestly lost track of how many people have told me my child does not need alternative forms of therapy, because PT, OT and Speech are therapy modalities covered by most insurance companies. (Keep in mind some families even struggle to have the basic PT, OT and Speech services covered.)  They think that if an insurance company fails to cover or recognize another form of therapy then it must be because it's a want and not a need.   This school of thought implies your child does not need any other form of therapy if it's not a covered benefit.

There are a wide range of alternative therapies available:
*Conductive Education   * Feldenkrais Therapy
*MNRI (Masgtova Method Therapy)
*Stem Cell Therapy  * Dolphin Therapy   *Reiki Therapy
*Gesret Method Therapy    *Hippotherapy 
*Cranial Sacral Therapy   *ABA Therapy (Applied Behavior Analysis)  
*Warm Water Therapy    *Music Therapy   *Dance Therapy
*ABR (Advanced Biomechanical  Rehabilitation Therapy) 
*ABM Therapy (Anat Baniel Method)
*Acupuncture    *Bones for Life   *Therasuit Therapy
*MBS Therapy (Mind, Body & Soul)     *Massage Therapy
*Chava Shelhav Method Therapy    *Color/Light Therapy
*HBOT (Hyperbaric Oxygen Therapy)    *Vision/CVI Therapy
 *Movement Therapy *Therapy Through Art    *Yoga Therapy
*Vital Stim Therapy  *Aromatherapy    *Tactile Therapy
*Animal-Assisted Therapy
All forms of therapies are costly.  One session can on the low end be $50 per hour, on the high end $500-$600 hourly.   Some forms of alternative therapies have therapy centers, in which you have to pay thousands for a week or two of daily attendance.   It is easy for a person who doesn't have a child with special needs to say, these therapies are not a need they are a want based on price tags alone.  The majority of special need families look at it from the perspective that if there are certain therapies that work for their children and will offer them a better quality of life, the opportunity to improve, whether that be so ever slightly then it's plain and simple.   That therapy is a need.  

Adaptive Equipment may just likely be the most controversial aspect of needs versus wants in relation to a child with special needs.  

Fact:  A child who cannot walk is in need of a wheelchair
Fact:  A child who cannot walk also is in need of a gait trainer/walker
Fact:  A child who cannot sit unassisted is need of comfortable adaptive seating (even if viewed recreational for lounging purposes)
Fact:  A child who cannot crawl is in need of an assistive crawling device

Most generally don't dispute the above facts, unless you are of course an insurance company trying to dodge funding those needs.  However, the perception that children with special needs for instance don't need the following:

Fact:  A child who cannot sit or walk, who has limited head and neck control needs a special needs sled to play in the snow
Fact:  A child who cannot walk independently needs an Upsee by Firefly
Fact:  A child who does not have good use of their hands needs costly toys that are switched adapted to play

Now those types of things people are going to shake their heads at.  They'll say really does your child need a $600 special needs sled or is that just a want?   You should be able to build one right, with some cardboard and tape! Or you should be able to just use a walker or gait trainer and don't need the Upsee to allow your child a chance to walk alongside you and participate with in the world easier.   Or why can't you just rig a string to a toy and wrap it around the child's wrist.  Surely he doesn't need these costly adaptive toys?

It's very different on viewing needs or wants relative to a child with special needs.   It's all a need because they cannot participate in the world any other way.  And because many children with special needs are so severely physically limited they require devices and pieces of equipment that allow them to the opportunity to engage in the world where they otherwise couldn't.   As special needs parents we are rather resourceful with DIY (Do-It-Yourself) projects.  We can build and rig some really great things.  But sometimes you really need a product specifically designed by experts.  

Home Modifications/Handicapped Accessible Vans
Parents hear all the time:  You can just lift him everywhere you don't need a handicapped accessible van.   An adaptive bathroom?  What for?  Just have someone hold your child on their laps and hose them down...  need a ramp for your doorway?  You're not strong enough to lift a wheelchair in your house?   Yes people really think these things.  

Granted if you don't have a child with special needs it may be hard to appreciate our daily struggles.    It starts to become a safety risk when you are trying to load a growing child into a car seat, unloading and transferring a child from place to place has it's own safety risks.  I remember a time in fact when I fell trying to self-correct my son's spastic movements and landed hard with my elbow and my child's head smacking the pavement.  Something that wouldn't have happened if he was already in a wheelchair that I simply wheeled out of a handicapped accessible van.  But I had to transfer him from a car seat and then to a wheelchair.   Bathing a child with special needs also comes with challenges.  Standard bathrooms are not designed for a child who you wash while hitting your back against a toilet, a child that you have no where to lay down after a bath because he's now too big for the bathroom floor.   A child who cannot even wash his own hands because he doesn't have access to a handicapped accessible sink.    And although most parents with special needs children have a strong threshold for pain and endurance, we still lack the ability to carry a 100lb stander up the stairs or a 250 pound power wheelchair into the house.   There comes a point in time where all these things become a need and not a want.

Without question if you just utter the words "special need"  it's attached to some hefty price tags.   You'll find those that say well if you cannot afford, therapy, equipment, home modifications and a handicapped accessible van then it's not a need it's a want.  After all you have to be able to afford something for the finger not to be pointed in the want direction.  Unfortunately, you just can't classify the everything as a want when you have a child with special needs.  Every single special needs parent wants to be able to financially provide all these needs.  And without question they are needs.   But we can't always do it alone.  We have to rely on foundations and grants, we have to ask for donations, we have to hold fundraisers.  Because we know that we we must find a way to meet our child's needs.   We are not trying to live above our means. We are the families doing without, to put any extra we can towards assisting our child with special needs.   We think twice before we buy new shoes for ourselves even when the soles are worn and broken,  we think twice about spending money on recreational fun activities because we know that we need to save every penny for our child's needs.  Yet even though we 're doing all we can, yet we still have those telling us that we don't need any of this for our children.  We only want it.  It's an important distinction that stares us in the eyes each day as parents who have children with special needs.


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.