Autism: When Enough is Too Much
The story I am about to share, I am sharing because I made a pact with myself that I would do what ever was within my power to help prevent another family from having to go through what ours endured. I am also sharing this story because I was inspired to by a recent conversation with Ed Arranga, founder of Autism One. This is my own version. I’m sure my husband and his co-worker, who is a friend of the family, would remember details that I may have, for what will become obvious reasons, forgotten.
I think it is important for this subject to be talked about in our community. I’m pretty sure that most at one point have considered taking this action. A last action.
I had a dream for my own family, and my children, just as we all do. My dream, and our reality, for a long time were polar opposites.
On November 14, 2005, I decided I had had quite enough. There was much more going on in my life at that time than autism and being a military spouse. I’ll spare you the details, but it was a lot of weight on my shoulders, weight that I had been carrying for over 20 years. Autism on top of this? Now I have to carry this too? I felt a tremendous burden of guilt, that I had caused the boys to have autism. I couldn’t take anymore.
I went to the base that day to visit Dave at his office, and chatted with a few people in his office. I was on a mission. I stopped at the base store on my way out and bought myself a nice bottle of Vodka. True to my mission, I came home and made myself a vodka and cranberry drink. I began to clean the catch plates on the stove. I made myself another drink. Still cleaning those plates, they were gross you see, I made another drink. I have no idea how many I’d had by the time Dave got home. I’d had enough of life, but I hadn’t had enough vodka and cranberry, that was for sure.
When Dave got home, I had another drink. I don’t know if I was done with those gross catch plates, and that was my cue that I was done? I don’t remember. I was going to meet the porcelain God, and not in the way that you think. I think I may have had another drink. I needed to be numb before that “meeting”.
Dave greeted me, and went upstairs to change out of his uniform. I calmly stopped whatever it was I was doing, walked into the bathroom, got down in the puke position, lifted the toilet seat and proceeded to slam my head into the porcelain bowl. I slammed it so hard that Dave heard it all the way upstairs. There was more slamming of my head on that toilet I use every day, over the course of the evening. At one point I locked myself in the bathroom when Dave left me unattended to go do something, and he heard more slamming of my head. I remember him screaming at his co-worker that this person could not let me into the bathroom unattended. That is the only way I even remember that his co-worker was here. Dave had to take the door handle off to get to me. It’s still jacked up from that evening.
Yes, I am one determined bitch. I had simply had enough. Honestly, with how hard I hit my head, and how many times, I should be dead. I guess God had other plans. It was shortly after this that I made the pact with myself.
I had to deal with the grief, the guilt, and the burdens I’d been carrying around for so long. If I was going to live, then I had to get through this to be there for myself and for my family. About a week later I wrote this poem in my head in the shower one morning.
“I slam my head into the toilet,
Leaving visible the wound my heart feels.
My Brain takes a turn,
My soul snaps into place.
I realize guilt and grief are not my destiny,
Not my fate.
As the wound on my head heals, so does the one on my heart;
At times painful, but it is a start.”
I had no idea what was to come, but I put my damn boots on again. To do anything else would have been selfish beyond measure. I was done being selfish. It took about a month for the wound to finally just be a scar. It’s taken a lot of other things, including much humor, a lot of writing, and of course some sex (I wrote about that HERE), to bring things back to where they needed to be for our family to heal.
I wrote another poem right around that time. It means many different things to me.
“Judgment’s passed by those who don’t or refuse to understand,
Prevented our family from receiving a helping hand.
The pain this has caused, the agony untold,
The manifestations are beginning to unfold.
The song in my heart, extinguished like a flame,
The Karma God’s are looking to place blame.”
So, as I said, God had other plans for me. I guess maybe he heard the pact I made with myself, and gave me some extra strength to make it through all this.
I wanted to share my story with our community, because there are many signs of someone contemplating suicide. Although in my case, the only one was depression, and outwardly it was not that bad. I was really good at masking how bad I really felt. I believe it’s important for our community to have this brought to the table, because we all remember too well hearing the words, “your child has autism”, and just how devastating this can be. I know the guilt I felt about wanting to be done with it all compounded what I already felt.
I have not been able to locate any statistics on suicide in the autism community, but we all know we’ve see a few just this past year that made headlines. We need to be aware. We need to rally around those joining our ranks, and support them. And if we need help, we need to ask for it. I know every single person I’ve met on this journey would do anything they could to help a parent in crisis. Life is precious. Our children are precious, and they all need their parents there with them to make it through this journey called autism.
To learn more, please visit http://www.suicide.org
Angela Warner is an Air Force spouse and mom to four children, two recovering/recovered from autism. Ang doesn’t drink vodka, and she doesn’t drink the Kool-aid either.
Thank you for sharing this with the world, I know it took incredible courage to do so, and i'm sure it will help many people when they need it most.
The one thing that's always gotten me through having a daughter with PDD-NOS, is the thought that I wasn't given a child with autism. A child with autism was given me as a father. With that thought in mind, what am i going to do being entrusted with this special soul? Sometimes the burdens are hard to carry, and sometimes they go unnoticed, and even unwelcomed. but through it all, remembering that I am the one with the choice in how I react to and handle every situation and decision makes all the difference.
Posted by: Patrick | May 15, 2009 at 12:20 PM
Angela, Thank you for making me aware that I am not alone with these thoughts and feelings. I have been in a VERY dark place lately and have had thoughts I was embarrased (and mortified) to admit. Ironically, I found your story on Mother's Day so thank you. Thank you for the gift of hope. It has given me the strength to fight another day for my beautiful boy.
Posted by: Tracey | May 10, 2009 at 02:35 PM
You are preaching to the choir. When I received the diagnosis that my only child was afflicted with such a serious condition, I collapsed into a heap of such immeasurable despair and cried from a place so deep within my soul, I swear that the angels sat up and took notice.
It was my Mom who gave me the strength to perservere with the lament that having buried my sister way before her time, I was in the enviable position to at least be able to help my child. She lamented that she wished you had been able to do the same.
Where there is life, there is hope.
Not one of us is to be judged by our darkest hour. We all have had them. I beg forgiveness for mine and pray I am judged by the sum total of my deeds, not my moments of fraility.
Also, I believe that some of the same genetic dispositions that predisposes our children to the brain inflammation, also pertains to us. I have read articles by Dr. blaylock that describes anxiety and depression as inflammation of the brain brought about by vaccinations, virus, MSG, processed foods, heavy metals, etc. Research what he writes about excitotoxicity, anxiety and depression.
I swear when I get lazy and go off my organic diet, I experience more mood swings. Learn as much about good nutrition as you can. Exercise.
Remember the saying that God couldn't be everywhere so he created Mothers. Angels take the form of the right word at just the right time and the good deed that's just around the corner.
People of good conscience have the capacity to channel their "inner angel".
I believe you now possess the wisdom not to sqander it. Thank you very much for sharing.
Posted by: Handthatrocksthecradle | May 08, 2009 at 04:45 PM
Thank you for sharing your story - this will help so many moms who are at the end of their rope, who want to end it, who see no way out. They are not crazy they are overwhelmed and in despair.
Thank you for empowering them to live another day, by showing them there is hope, and that there is more goodness in living than they are feeling right now.
Posted by: chantal Sicile-Kira | May 07, 2009 at 09:35 PM
Angela, thank you. I remember sobbing into my cell phone to my mother in a random parking lot I'd driven to with the sole intention of crying my guts out while a babysitter watched my kids. Nick had just been diagnosed with Autism and my mom had some really wise words.She said "this will always be harder on you than it is on him". Aside from the endlessly invasive medical crap he has to deal with, I think she's right. I'm glad I heard this from the start. My feelings that go along with this journey are raw - fleeting thoughts of ending it all and taking my little crew with me (beautiful irony here, I'm a psychotherapist) vacillate with constant worry that I'm not taking good enough care of myself, I'll die soon (and that will be my fault too) and no one would be willing to care for Nick as I do. About a year into he diagnosis I had a another powerful thought...my little family is living life after one of the worst things has happened (Nick's vaccine injury and subsequent ASD diagnosis) and that means that all the rules have changed. This felt wildly freeing to me. I'm not sure what in the grand plan is responsible but the parents of kids in the same boat as I am are the most amazing people I have ever known and the more time I spend with them the less time I want to spend with anyone else. Thank you, Angela
Posted by: Alison MacNeil | May 07, 2009 at 06:57 AM
This is what it's all about Ang. I find such strength in our community. I think of the "Amanda Peets" of the world. When and if this ever happens to their child(ren) we will be there with open arms. When their fear leads them to us, we will not scold and say "I told you so". Some of us would probably like too but we won't because that's not what this is about. We are an Army. We are not only warriors but soldiers. The carnage from this war will last for decades.
Years ago, I was diagnosed with kidney cancer, November 28 of 2002. Two years to the exact date that my mother (my best friend) died. I met my husband on November 30, 2002 in a bar. I was a single mother going to school, trying to make a living and I had just got slapped up side the head with cancer. I was 30 yrs old. That evening, I was drowning my sorrows. I had taken some pain killers (more than I should have) and drinking top shelf. Then this angel in a leather jacket with long hair and a goatee sat down beside me. He walked me home that night. He deposited my drunk ass on my couch, covered me up and walked all the way back to the bar. He didn't even try to sneak a kiss.
This is Riley's father. If it wasn't for him, I may have...well I didn't, so the moral of the story; angels come in all forms. When I had my surgery, he was there. When I found out I was pregnant with Riley, he was there, on his knees thanking me for making him a father. When Riley was diagnosed with autism, he was there, telling me, it's alright babe, one step at a time. He's always there. Always here.
I had a scare this past couple of months. They thought my cancer was back but this time in the bone and liver. This was the first time I had ever seen Tom let his guard down for even a second. We sat in the room (you know the little office where they give you bad news?) I heard the doctor say, "This needs to be checked up as soon as possible. This looks like cancer." I also heard Tom's breath catch. I turned and looked at him and he was swallowing hard but still looked at me and smiled "It's ok babe, one step at a time."
We had a party at my house tonight. GFCFSF and egg cupcakes for all. I have a clean bill of health. Everything came back normal and I only need to be checked every year.
The most important thing I have is my beautiful and absolutely perfect family.
There have been times when I have felt the despair of autism and the crushing weight of it all. It's hard and it's so wonderful to know that I'm not alone in my feelings.
Thank you , Angela. Thank you so much.
Posted by: rileysmom | May 07, 2009 at 03:14 AM
Thank you so much for having the courage to voice our emotions and to move through those emotions in the way that you have.
Posted by: Twyla | May 07, 2009 at 02:18 AM
Girl, I know where you are coming from. If my boy didn't need me so bad, there are times I would have been tempted to end it. Now I feel like the boulder ( his autism) is starting to budge a little bit. God bless us all.
Posted by: Julie | May 07, 2009 at 12:11 AM
Thanks for your authenticity. I feel, as a single mother of three, that I want to be around for every moment. However, its really interesting that I was heading to the accupuncturist today to request a treatment for dealing with the feeling of guilt that I caused this because I knew about the concerns of vaccines but did not follow my intuition or empower myself, and caved in to the pressures of the pedicatrician and school requirements thinking, we'll be okay, chances are slim, perhaps I'm overreacting to the research, perhaps they're right/I'm wrong, etc. I want to be able to somehow let go of that guilt as I believe it causes illness to be left incomplete on an issue so intensely.
I still years later, cry privately in the shower where the kids cannot see me. I know they perceive my pain. I too have had my own share of "stuff". I hold it that all the prior strife in my life was to build the resiliency it takes to travel through the recovery process with my son and family. And as crazy as it sounds, the passage has taught me more about life, its frailty and at the same time, its strength.
Thanks again for being a stand sourcing parents as possibility. Be great!
Posted by: Dawn Loughborough | May 07, 2009 at 12:02 AM
Angela, thanks so much for sharing your story. I think it truly does help to know we are not alone, we are not the only parents feeling those low points.
Posted by: Dana G | May 06, 2009 at 09:56 PM
Being with you hasn't always been pretty, but very, very real. Your family has grown so much, and I must acknowledge the biggest growth has been in you, the Mom in you. And now this, too. I am so proud of you!
Posted by: co-worker and neighbor | May 06, 2009 at 09:42 PM
I swear, my husband is usually a man of few words, but when he speaks, he says something.
Thanks babe, for making me cry :D That night did change us both forever, and we have been through so much since then. I know when we are old we will be able to sit in our rockers on our front porch and both of us know that the sacrifices and experiences we both have made will have helped countless families and children around the world.
I think I have just found myself a new mission, along with all the others I have LOL... I am so grateful for the positive response from everyone who has commented thus far. There is a great need for effective mental health help in our community, and who the hell has time to spend two or four hours a week with a therapist (including travel time). This is something I will be continuing to work on.
My love and thanks to all those who have gone before me. When I found you all, you gave me the strength to pull it together once again to help my own family. My love to those who follow. We are all here for you.
Posted by: Angela Warner | May 06, 2009 at 07:29 PM
Angela, I may never know your complete perspective from that evening but it obviously affected us both deeply and in ways we may never fully be able to explain to each other. It is human nature after all; I mean the ways we perceive our experiences are unique to us and us alone. I too have carried the guilt but like I have told you many times before, guilt is like a suitcase…when it gets too heavy just set it down. It’s easier said than done of course.
That night was extremely painful for everyone (even though your physical pain was most likely - numbed). For me it was heartbreaking, and I had never felt so alone in all my life. However, that night was not about me and all I could do for the next 6 hours or so (yes, it was that long) was to try and keep you from hurting yourself. It was physically and emotionally exhausting. That night set the tempo of my anxiety for the years to come, catapulting me to your then current level of exasperation and depression with one blow to the head. Again, this is not about me, all I’m really trying to say is, that night changed both of us forever.
I have always respected your ability to write and also think it was very brave of you to want to share this part of your life, exposing this part of your inner struggles. It is never easy but again you put others before yourself. Realizing that this vulnerability may help others, even it only helps one family it will have served to expose once again your greatest strength, your ability to understand and seek truth where there seems to be only fear and despair.
Posted by: ~d | May 06, 2009 at 06:11 PM
During our worst and earliest days,I thought about just crossing the center line into some poor oncoming trucker more than once. I at least had the where-with-all to restrict these thoughts to times when I was alone in the car. And most importantly I had the where-with-all to let such an idea be only a momentary flashing thought.
What saved me...I knew there was hope...biomedical treatment was working. I knew how much love I had for my kids and my husband and them for me. I also knew I was not alone. Suck it up and DEAL!... I told myself.
I am so glad I sucked it up and hope won out. Today my precious girl is thriving yet still recovering. Despite the darkest days and though I would not want to go though it all again, this difficult journey has brought blessings and beneficial life changes to our family too numerous to describe.
Posted by: Pamela | May 06, 2009 at 05:05 PM
Thank you Angela. Telling your story in this way makes you a stronger person and it tells parents who might feel the same kind of despair that they are not alone.
I always find it laughable that the press continues to describe autism as a disorder featuring "a lack of communication skills and an inability at social interaction." One dad once told me that it sounds like the kid just can't get a date. We need to recognize the toll autism takes on parents. They are truly the most heroic people I know.
Posted by: Anne Dachel | May 06, 2009 at 02:39 PM
Angela, you deserve a prize for being the bravest mom out there. We all go through very dark moments but few of us have the courage to put it out there. I applaud you for that.
And your poems rock, especially the second one.
Posted by: militant :) | May 06, 2009 at 02:09 PM
You are amazing. You are a true warrior--one who really did pull themselves up from their bootstraps. What you shared has truly touched me and makes me very proud to know you, be it only through email--but what a Godsend email has been! Autism--well, somedays it's like "thank you, Sir, may I have another" and other days, well, they are better.
Keep on writing and fighting--your words are inspiring and I'll fight on the front lines with you any day!
Posted by: Jenny Wirth | May 06, 2009 at 02:07 PM
The strength it took to share that story is amazing. We are all lucky that you have been able to pull up and find yourself again, but your children and husband are far luckier that us.
Think about the parents who have not been able to pull themselves out of the despair that hits when they are told there is no hope for their child. Some parents make an awful choice to end not only their own lives but the child's as well.
Autism affects every Mom,Dad,Brother and Sister of the child who gets the diagnosis. We need to keep talking and telling the world that being told there is no known cause and no cure for Autism is unacceptable. The word is getting out.
In 1995 when we heard the word Autism, we were also told that most of these children will end up institutionalized.
But I knew my son was in there, he had been with us for almost 2 years before he disappeared within himself. And he *was* in there and continues to amaze people everyday.
Angela, you will make a difference in someones life today because you have been brave enough to tell your story. Thank you.
Posted by: K Fuller Yuba City | May 06, 2009 at 12:22 PM
I read the story. I share the sadness and feeling of hopelessness. I have a son of 13 with PDD-NOS. It's such a challenge for us parents with this. I suspected something After his 9 month immunizations. October 5,1996 is a day I'll never forget. An unexplained spike in fever of 105 a trip to the children's hospital in Atlanta, GA; hearing my son screaming in the exam room where I wasn't allowed to be with. They poked and stuck him with a Lumbar Puncture only to find nothing. I went through Febrile seizures until he was 18 months old. Now after many years of school training and reading every thing I can on Autism,plus many nights of crying and coming to grips with this horror, I have resourced myself to finding a way to help my son in his qwest for life. Speech was delayed as well as many communications problems, social skills are under skilled; The other kids in the school pick at him because he doesn't fit in with them. Now puberty is onsetting and we have many challenges yet to overcome.I thank God for the fact HE has sustained my through the roughest of all this. My son is a kind and sensitive boy and he given a different perspective for life. I view life with so much more of appreciation. He is indeed different, but I believe God has a plan for him and all of the other children who have this.It is up to us as a society to allow this children the opportunity to be normal as possible. We need to educate other kids and adults, in more tolerance of kids with disabilities. They are human and need our love and support. May God bless all of the families with Autism and other disabilities. I pray HE gives the courage and tolerance and endurance it takes to get through and to never give up in our qwest to find the answers we need to explain this.
Posted by: Mary Miller | May 06, 2009 at 11:56 AM
You are incredibly brave. By sharing your story other parents will see they are not alone and that there is hope. Parents everywhere- we must stop blaming ourselves. I am guilty of that as well, but is not fair and I am sure our kids do not blame us either.They see how much we love them, how hard we work trying everyday to heal the everday.
Angela you are an amazing Mom!
Posted by: Katie Wright | May 06, 2009 at 10:14 AM
Jeanne - you are too f'ing funny.
Angela - thank you for sharing (yet another) very intimate moment with us.
Posted by: Cathy | May 06, 2009 at 09:56 AM
Angela, I am glad you survived your pain and feelings of guilt, and that you had the courage to post your very personal story.
In my opinion, when we experience the day of diagnosis (or days of diagnosis), or just recognize with our own eyes, what has happened to our children, it is no less tragic than any other catastrophic event that can happen in this world. Dreams about the future for our children are shattered hideously. Downgrading hopes of brilliance and success, to those of mere independent living and subsistence (or perhaps more, for the lucky ones) is painful, and sickening. The further insults we receive from the medical community are disgusting, and intolerable. (And some doctors wonder why we do not embrace them?) Our children are not trash to be thrown into a garbage bin. Our children need to be given the exact same level of respect and care shown to the typical children by the doctors who profess to do no harm. If the doctors do not treat all children with equality, then they do not deserve the right to treat our children with ASD diagnoses.
Posted by: Gayle | May 06, 2009 at 09:48 AM
Wow, Angela, thank you so much. What a gift your honesty is to our community. I know we've all had the dark days on this journey---and you're absolutely right---we have to talk about them, acknowledge them and get help to navigate them. "I realize guilt and grief are not my destiny, not my fate." I love these words! Thank you again for keeping it real. Big hugs to you and yours.
Posted by: Sunny | May 06, 2009 at 09:42 AM
angela, as our lives forever changed the moment before autism,all the moments after.. and i find myself trying to remember the precise moment it got all f....ed up..it is burned into our souls. the shame, guilt..anger..the hyper- awareness ..I told everyone I knew I was not available for anything else except working on helping my son..I pretty much remained there...there are no dinner parties, no shopping sprees, no long chats on the phone..but there is hope,and healing everyday..and the sence that i have grown up especially because of this autism..it has humbled me to my knees..and i am a better person than i was, because like you i am part of the walking wounded..we see and know what really matters...candace
Posted by: candace passino | May 06, 2009 at 09:21 AM
Ang, thanks for sharing this story with us. Those who know you know how strong you are... if autism can break you, we better all watch out.
You know I love you and am ever so glad you made it through your personal storm.
Oh, and thank God you have such a hard head. LOL
Posted by: Jeanne | May 06, 2009 at 09:18 AM
Thank you for sharing - I know I'm not alone in the "lows" of my life, but knowing there are others out there, pulling up their boot straps, coming back lick-after-punch, makes me stronger knowing I am not "an Army of One".
Posted by: Deb in IL | May 06, 2009 at 08:55 AM
Thank you Angela for sharing, and thanks Tannersdad for remeinding me today is f day.
Posted by: kathleen | May 06, 2009 at 08:11 AM
When They Tell Me
the nurse practitioner,
and the intern,
we are crowded
in one office.
what air is left,
they collectively take
each time the diagnosis
Why do we say given
when so much is taken away?
I take my time to respond,
my eyes wandering to the art
of children framed
along the wall,
and I can not stop myself
reading the labels
telling me these drawings
were done by autistic
children in Russia.
I am the only one
standing, the rest
still waiting. Suddenly I laugh,
and I am not sure
if I have laughed to myself
or aloud in front of them.
If I could just at this moment
lead them home to my room,
show my bedside table
piled with books overdue:
the woman who talks with gorillas,
the one who thinks in pictures,
the son who loves windows,
those who see smells,
the girl who paints prismatic paintings
If I could open my journal
point to the pages
where I have dared
to write the word.
I have known for so long,
I wonder if I have brought this on.
Poem from poet Grey Brown. Brown teaches writing at Duke University. She is the author of the book, "When They Tell Me," which chronicles her family's struggle with her daughter's autism. Brown joins public radio host Frank Stasio to read from her work and discuss the therapeutic power of poetry. The podcast is online at http://wunc.org/tsot/archive/sot0430c09.mp3/view
Posted by: bensmyson | May 06, 2009 at 08:06 AM
Thank you I know you have saved some lives with your story. I have found that Faith Family Fun and Friends go a long way to help stay the course.
Today is F Day. Talking about fun. In the name of Autism Awareness and Action pick some thing that starts with F and boycott it today in the name of Autism action. Join one and all. http://tinyurl.com/dx32ar
Posted by: Tanners Dad | May 06, 2009 at 07:15 AM