Shadows to Shade

18 01 2012

I’m scared.

There. I actually wrote the words down; I wasn’t sure if I could. Many know I’m grieving right now, but few know how scared I am. Not a panic that I feel when I try to sing in public; not my posttraumatic stress disorder panic and anxiety related to certain medical procedures that remind me of an assault that occurred in my 20’s and/or my recent hospitalization for whatever happened to my arm that resulted in that horrible infection I had. This is…..something else.

I’ve been in denial about it for several months, believing from head to toe that if I thought it was NOT true, it would turn out not to BE true–the power of positive thinking. Names have great power; I did not want this to have any power.

When I found out last Monday that my friend, Diane, died, it snapped me back to semi-reality and I accepted that my test results on Friday would come back positive (as my doctor had informed me they would), but the question of what it was and to what degree still lurked in the shadows.

Shadows remind me of my childhood in our tenement in Brooklyn where this spine-chillingly vicious dog lived that would lurch out and try to bite me every time I went up the stairs. Shadows were the bad things that were about to happen to me in the rooms of my home most of my so-called childhood. Wondering, when I was age 4-5, if the wife could survive the beating from her husband in the shadows under the neighbor’s door. Shadows are the terrors that torment you, the face you see in every person after you’ve been told at age 9 that your stepfather may show up one day and try to kill you. Shadows of the life you would never have had when your mother tells you she wished she had aborted you (and meant it). Shadows are the abandonment you feel at age 14 when she tells you to leave and take only what you have bought with your own money with you. And the shadows that stretched from her grave to crush my heart one last time when my sisters found their baby pictures while going through her stuff, confirming that when she laughed in my face when she said she threw mine out, that I guess she really did. The only evidence of my existence that I was in her life are in those pictures I happened to be in with my sisters. Thrown away into the shadows of garbage she felt I was.

I was about 14 months old here; the earliest picture that exists of me now. My sister, Eva, holding my hand. I was a cute baby!

After all I’ve been through and all I’ve seen, to say I’m scared now seems illogical. The tests did come back positive, but there seemed to be more questions now after the kidney biopsy than answers. A lot of blood work was drawn after that visit–more shadows.  Yet, there is a difference.  There is trust, great trust, in those caring for me that is helping to keep the shadows in their place.

On February 3, I hope we will be able to modpodge some of the puzzle.  Names have great power, even names things are not. Until then, I remain in….shade.





Patrick Turns 15

17 12 2010

At 11:57 a.m. today, December 17, Patrick will turn 15 years of age. It is a day worth celebrating, especially given the progress he has made since his diagnosis of autism when he was about 18 months of age. There were times then he retreated into a world of almost catatonia, where a low hum was the only sound coming from him. We used to call it his mantra chant. The path has been fraught with ups and downs. We were like ants on a mountain, fighting for every piece of territory gained, always being undermined by the elements. A parent would not give up on their child if they had cancer; they would seek out whatever treatment their child needed regardless of whether or not it was covered by insurance, regardless whether or not it would lead them to bankruptcy. Such is true of parents with kids with autism. The only difference is that the cancer (the autism) is a lifelong battle.

Patrick as a baby

 

True to our beliefs, we have mostly lived in the present for Patrick. I stopped blaming myself for his autism. They were not all happy days, especially during 2004-2010 when we battled the school district for every little thing; anger was the only thing to which they responded, so we used whatever was in our arsenal to help Patrick.

I cannot help by feel incredibly blessed by the miracle that happened to us. We made the decision to cut the school district out of his life, especially after listening to some digital voice recordings we made over the summer to see exactly what was going on in his classroom. Two teachers engaged in extremely unethical behavior. We had planned to homeschool him, but an opportunity arose for him to attend a private school in the area. In just a matter of 9 days, they accomplished more than the school district did in 6 years. I love the shock and awe coming from my friends and family as they witness his metamorphosis. In this Christmas season, it is the second best Christmas present we have ever gotten, the first being my son’s birth.

Patrick's first day home; getting acquainted with Sam, our golden.

We would not be good parents, however, if we did not think of Patrick’s future in some shape. In the climate of the current state of affairs in Texas, it does not look bright. There are some very grim statistics: Approximately 70% of kids with autism like my son (especially those who are considered nonverbal) will be sexually abused in their lifetime. Texas has the distinction of the notorious “Fight Clubs” in state institutions where the residents were made to fight each other for the entertainment of staff. In a report dated December 1, 2008, the Department of Justice sent a letter to Governor Rick Perry about their investigative findings. Texas lawmakers have known about the abuses and deaths in the system for years and never did a thing about it–until the DOJ threatened to cut off federal funding. In their report, they noted that between the fiscal year 2004 and the current investigation of 2008 more than 800 employees across all 13 facilities that serve nearly 4600 residents had been suspended or fired for abuse, neglect or exploitation of the residents. Over 200 had been fired in just the year 2007 and another 200 had been fired in 2006. Fifty-three residents in the state facilities died in just the year 2008. The state took legislative action, but things have actually worsened.

Our extended family all live out of state. As we age, so do our siblings. We cannot ask the children born to our siblings to take on the responsibility of taking care of Patrick as he ages if we are no longer capable of doing so. The sheer amount of information that would be required of them to understand is mind-boggling. The second hindrance is that the money does not follow the person. For example, if my husband and I were to die, if someone in the family decided to take on the responsibility of care, they would have to leave him in the state of Texas. If they took him to another state, he would go on the bottom of whatever waiting list that state had. It took 10 years for my son to get off the waiting lists in Texas; with funding about to be cut this year, the people still on the wait list are going to have to endure even longer waits. If we decided to leave this state to be closer to family, the same problem occurs.

People with disabilities face job discrimination. In November 2010, the Department of Labor released a report on job statistics for people with disabilities. The percentage of people with disabilities in the labor force was 21.5. By comparison, the percentage of persons with no disability in the labor force was 69.8. The unemployment rate for those with disabilities was 14.5 percent, compared with 9.1 percent for persons with no disability, not seasonally adjusted.

Stereotypes of the homeless and unemployed plague people with disabilities. Too many people conjure up in their minds a drunk or drug-filled person who chooses to live the lifestyle they do. In fact, in 2008 more than 40% of the homeless are people with disabilities. These stereotypes lead to cuts in state and federal funding that could help these people become contributing tax-paying citizens.

It is unlikely that Patrick will ever be on a cognitive level to ever become a father as he can barely care for himself. If Patrick was a girl, I would be able to obtain birth control pills to protect from the incidents of sexual abuse that might lead to pregnancy. Because he is a boy, a vasectomy as a method of birth control is considered controversial. This is different from the controversy of routine sterilization of people with disabilities in the past.

All these things lead my husband and me to the conclusion that we have to outlive our son. If we do not, there will be no one to protect him.

Me and Patrick; I could look at him all day.

As we celebrate all of his accomplishments today and rejoice in remembering the day of his birth, we keep a wary eye on his future.

Autism Awareness