TAKING CARE OF YOURSELF – THE CAREGIVER

     TAKING CARE OF YOURSELF – THE CAREGIVER

It is so important for Caregivers of the Disabled to “Take Care of Themselves”, as I have been told many times.  Unfortunately, when you care for one or more disabled persons, you lose touch with yourself and actually do not know the meaning of it.  You are so busy taking care of the other person(s), that you lose touch with yourself.  There were times I didn’t even really look in the mirror to see what I looked like being so wrapped up in the care of others.  When I did look, I saw a disarrayed person, with my frizzed hair all over the place.  I looked aged, drawn, and very tired.

Many times this happens when you are too good at your job.  Often as is the case with raising Autistic Children, you have a certain degree of OCD and Anxiety, which is normal and common, but increased by giving care to this population.  I am strong and determined.  I became a perfectionist at what I did.  All these traits come with the territory and part of Routines and Strict Schedules.

Normally, when you deal with people with Behavior Issues, there is a degree of Behavior Modification that you learn which puts you on a rigid schedule.  You learn to become orderly and restricted according to the Disabled Person’s needs.  It is very easy to over-do it as you become more and more tuned into this life-style.

Sometimes it takes a major “change of life event” to jolt you to think more about yourself.  It often is not easy to do.  But, over time, when your own health issues become prominent, as you age, and have lived at least half your life or so as a Caregiver, this is the point of change.

Stress can do a lot of damage to our overall being.  Outlets have to be created in order to relieve some of it.  All things change over time, one way or another.   Some for the good and some for the not so good.   Establishing coping mechanisms can help along the way. 

Another way I learned to deal with my life’s trauma was to look at my whole life and not just the recent half that was a living nightmare.  You have to see yourself as a whole person with a whole lifetime, not what has overtaken you from all the stress and agony life has put on you. 

I always felt I had a Guardian Angel watching over me that comes to my rescue at my darkest hour.  We have to see that there is a light at the end of the dark Tunnel.

DAY PROGRAMS CAN BE DETRIMENTAL TO THE DEVELOPMENTALLY DISABLED

I just experienced a really bad situation with a non-profit Agency that my son is part of.
I resorted to writing the Governor of NJ and the Acting Commissioner.  I intend to call the Museum where the Art was to be displayed.   I also wrote Channel 12 News in hopes to help any other disabled person who is unjustly abused in this horrific fashion by a DDD funded program.

This is part of the Letter I wrote to Governor Chris Christie:

Arts Unbound really did a number on Anthony.  They took 2 pieces of his Artwork for a 3 month Show at Morris Museum.  They wanted the same 2 pieces that were in his last show at their Gallery in Orange, NJ.  They took these 2 pieces several weeks ago.  Last week the Director, Margaret Mikkelsen called me looking for the frames they were in.  I said we did not get them back in the frames.  The Director said, "They will figure it all out".   Now I get an email stating that they didn't know Anthony's Drawing Teacher used his own Frames and he doesn't have them anymore.  So, now they are NOT putting Anthony's pictures in the Morris Museum Show.  No one told us the pictures needed Frames to begin with.  

In any event, why did this Director wait until the last minute to inform us after holding the pictures so many weeks that they needed frames to be in for the show and just cancel him out without prior notice at all?   This was a very low blow to Anthony.  This Non-Profit gets a lot of Government funds to provide services to the Disabled to help these kids with their Abilities and promote them and help them reach their goals.  We're talking about up to tens of thousands of dollars per client.  So, how could they do such a horrible thing to a promising Artist?  The Frames were cheap, thin, black frames to just hold the picture to hang it.  Plus, there is supposed to be a budget for supplies.  What happened to that?   Also, they are always having fund raisers, and getting donations to increase their monetary budget.  It reaches a point that these Non-Profits become so Selfish that they become detrimental to these poor kids.  Unreal and unfair.  What a let down from the place Anthony least expected.

So, Arts Unbound gave him more Anxiety and Depression.  This is contrary to what they post on their Web Page as their Mission Statement and Goals for the Disabled.   Plus they are always promoting the "Chosen Few" to the neglect of the others.   What a waste of Tax Payer Dollars this Place is.  Especially increasing the Emotional Problems of a Disabled Child with this Outrageous Antic they just pulled on him.   My son does not deserve this.   You would do better paying for these kids to go to a real college program than wasting the Money to benefit these Greedy Non Profits who can't even put a cheap frame on a piece of Artwork for a Disabled kid to be in a Promised Show.