This Post is scheduled to post on the early morning of Friday February 3, 2012. It is My Daughter Birthday today… and I am sad …..
It is a sad post actually… it is about my daughter. While the happy news is that on this day she attains the milestone of 21 years of age…. and I will abide by her wished to give her the first legal drink in her life (I have been instructed by her to make sure it is sweet) ….. the sad news is she faces a glib future.
My daughter is Autistic.. and hope as I may have I hoped and prayed that she would develop enough to be at least minimally self sufficient…. but that is not going to be the case for her. If I am no longer able to care for her then I fear.. really fear…. that the Government , in its efforts to care for her.. will in fact fail her like they have…. many others. WORSE, my own republican party has taken on an ANTI-NEEDY stance….. and if you know anyone on a fixed income you will know that the “COST OF LIVING ADJUSTMENT” that Social Security Recipients Get is NOT true….NOT real.. and their costs of living are far far greater than the adjustment they get every year.
I have thought of putting my assets into a specified Trust Fund…. but who will administer it…. I do not know anyone that is related to me or my daughter that I can trust to do what is right for her and to safeguard the money… and I mean that….. NO ONE related to us do I trust…. and that is a sad state of affairs in itself.
Lawyers charge too much to do this over time….. and if the assets were placed in my daughter’s name I fear she will not qualify for aid until all of that money was used up… and I wanted her to have that for the simpler things in life… Ruffles Potato Chips , Pepperoni Loves Pizza cut into half-inch squares so she can eat them without having any front teeth, the newest Sims 3 or whatever version is current expansion packs. I tunes, and Music players and the occasional new computer and TV set… and Movie and game rentals…. it sounds like a lot.. but it is not cost wise….
But then it is things that Insurance does not cover.. like dental… and Medicare does not cover dental.. or who will help her chose a good Medical plane if Medicare goes private.. and how will she affords it.
I am NOT going to outlive this child/Adult… so what is going to happen to her… where is she going to live… and because she is 100% NON VIOLENT and is not the personality that can even stand up for herself.. and gets upset if she is confronted and buckles like a house built of cheap cards….. She really is the most sweetest, kindest, caring, compassionate, empathetic young lady you would ever want to meet.
She is able to achieve intellectually to some extent. She even was able to earn a REGULAR ED diploma and pass the STATE High School exam…. but some days she cannot remember the days of the week and always has trouble with the months of the year. She is spatially challenged.. meaning she cannot see things in her mind.. so when it came to learning how to drive… she had to look down at the pedals to look at them before she wold put her foot down on one to stop or go…. Same with brushing her own hair.. she can not envision it by feel or concept and can’t brush it as a result.. Bathing, the same… and even if she could in some ways her dexterity and coordination is so awkward that she gets frustrated and gives up trying….. ohh and she is just 4 foot 8 so even kitchen cabinets are to high for her…. In the simplest terms she needs help in her every day living.. so even finding a good place to live is extremely difficult and I have not found that place yet.
I cold go on about my troubles with getting her her own Medicaid… she does not qualify because she lives with me and our HOUSEHOLD income is too high… or the supposed Medicaid Waiver Program that Congress refuses to fund so I can get her additional help and services… but what is the use.. there are a lot of people in that position and I am not alone…
What I am alone in and have been for almost 9 years now is taking care of this sweetheart. No ONE has really helped.. and respite care … I have no idea what that is.. even family ignores my needs to have real-time for myself… and so I am tired… and have literally lost my will to live.. no I am not going to kill myself… First because I have this obligation to this great person .. but second because i am a Cowardly Catholic… and help has no appeal for me.
And last….. which may seem the strangest thing of all is I am afraid….. NOT OF DYING…. For that Concept I fully embrace…. BUT BECAUSE MY OWN REPUBLICAN PARTY HAS BETRAYED ME AND MY FAMILY…. They have gone so far as to actually now believe the lies they have been telling the public for the last 4 years.. and I am DISGUSTED by their lies, distortions and worse….. their heartlessness…. and remember I AM A REPUBLICAN!! …… and it is for this reason I have to live longer.. because of their hubris…. their complete disregard for the human condition… because they have become something I do not recognize…. and maybe the 2012 doomsday prophecy will be true if my party wins the Presidential race based on this platform of hate.
Some of you will say.. ohh then you’re a Democrat… I say no way I am not that compassionate and soft on people who need to take responsibility.. so others say ohh your libertarian….. I say no there is a need for government and regulations because humans by nature are greedy and selfish and if left unchecked hurt all of humanity.
I AM A REPUBLICAN… and I am an ANGRY Republican…. but my party does not care.. they have only one goal…. not America.. not Americans.. Not humanity…. no …. ONLY ONE GOAL….. BEAT OBAMA….. Stupidity reigns in my party!!
Life is HARD.. it is an uphill battle for all of us.. and more so for those like my daughter who are disabled and disadvantaged…. WHO WILL BE HER ADVOCATE when I am not able to do it anymore….. Obviously not my family, my party, or my country.
So while this is an auspicious day for my daughter turning 21…. and I will make it as special as I can for her.. it is also a sad day as it only makes me sorry and care about what will happen when I can no longer be her advocate and care giver….. and I want to just sit her and cry when I write this………………….