A Letter to My Child with Autism on His 18th Birthday

17 12 2013

At 11:57 a.m. on Sunday, December 17, 1995, you came into this world. Your birth was difficult. There were just a few months between 5 months and 14 months where I thought things were ironing themselves out. Life for your young 18 years has been grueling as you tried to navigate a world that overwhelmed you every minute of your waking day. My heart always aches for you. As your mom, I tried my best to try to make it better for you, like a mother putting a Band-Aid on a boo-boo. But your boo-boo is so deep and consuming that the task was just impossible. This was nothing I could fix and that has been the hardest thing for me to accept. I am not sure that I will ever be able to accept that you will not get to experience all the things my friends’ children will–college, a career, a significant other, marriage, children of your own. My faith in God is challenged at every turn. How could a God exist that allows you to suffer so much? God did not do this to you. I think it was a perfect storm of genetic predisposition and human errors. As what happened in my own life, God said, “Okay, this has happened to you–but trust me to find a different path for your journey.” Your path just happened to be through a tropical jungle that required a machete to move forward.

Either the day after you were born or the week after you were born.

Either the day after you were born or the week after you were born.

I have no doubt that we have pursued every avenue that gave you the best chance to overcome your challenges. As my mind tries to focus on all the things you cannot do for yourself, all I need to do is watch the video from Son-Rise when you were 3 years old where all you did was “mantra chant” and turn pages of your book. There was very little eye contact.

I am so proud of all the work you did coming from your world into ours. How scary that must have been for you. I think of the scene from Lord of the Rings where the fellowship crosses the bridge in the Mines of Moria, all the forces around them trying to stop them from crossing.

Autism is the Balrog.  YOU SHALL NOT PASS!!

Autism is the Balrog. YOU SHALL NOT PASS!!

I have described you often as my life teacher. I have thought that I was the conduit to help you achieve whatever your purpose is in this life. If it were not for you, I would not have created the special needs ministry at St. Anthony’s–the countless numbers of people who were helped that may not have been. Your life and struggles have been shared with thousands of people. There is no doubt in my mind that you have influenced some decisions they have made in their own lives. Perhaps they are grateful for things they never thought to be grateful for–like the gift of just eye contact. Because of you, I have met extraordinary people. I have achieved a superhero level of patience. I have become a warrior not only of your rights, but the social justice rights of all people. I have learned not to make judgments of people. I have more compassion. I have always had a survivor’s strength, but your issues caused me to find strength even deeper than I could ever imagine.

Patrick & me at his 16th birthday party.

Patrick & me at his 16th birthday party.

The tears that flow so easily from my eyes today are a mixture of joy and pain. No parent wants to see their children struggle.  I don’t know what our future together looks like, but as long as I breathe, I will do everything I can to make sure you have the best life possible and to help you fulfill your destiny in this lifetime.

The seas may be smooth or rocky, but we will navigate them together.

The seas may be smooth or rocky, but we will navigate them together.

I love you pumpkinator. Happy 18th birthday!

 

 





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