July 24, 2010

May Peace Be With Us

I am not sure how to completely make peace with autism.

I am not the same mom I was four years ago, back in the days when I would lie next to my son in his bed and pray to God to just help him go to sleep. Why did it take him so stinkin' long to fall asleep, I would wonder. After everything we did during a day -- school, therapy, swings, slides, wagon rides through the neighborhood, etc., etc. -- why in the heck was he so wired at night? It sure as heck wasn't from too much napping. My son stopped napping WELL before his first birthday. So, why, why, why would I be praying at 10 ... and 10:30 ... and 11 ... and frequently much later ... for him to fall asleep?

Some nights I was almost frantic. My baby daughter would be waking up at any moment, needing to be fed. She woke up several times a night for the entire first year of her life.

I was so tired.

If I were to get out of his bed and leave him, I would later find my son atop the furniture or -- dare I mention it -- in the middle of a poop disaster.

When he finally would fall asleep, I would look at his gorgeous face, at the extra-long lashes, at his thick, dark hair .... and I would let loose with a sob that rose up from the depths of my soul.

And I sobbed and I sobbed ... all alone. Alone, even though two children and a husband were sleeping under the same roof.

I internalized my grief.

What had I done??? What had I done to make God so angry at me that he would allow my child to have such a disability. I was too harsh, too prideful, too quick to judge. I should have given more of myself to others. You name it, I thought it ... all the reasons why it was my fault that my son had so many challenges.

Yep, I was full-out crazy.

No, I am not the same mother I was back then ... when I wondered if my son would always bite me, if he would ever be potty-trained, if I would be taking care of him until the day I died.

I am a different person than that miserable, mopey woman.

I still sometimes wonder if I will be taking care of him until the day I die. But I don't think the words with the same level of despair, even though they still weigh heavily on my heart.

I suppose I have traveled through those five stages of grief, although my path was crooked and winding, and I certainly have not unpacked my bags.

I spent plenty of time in denial. Frozen. Paralyzed.

When I looked at my gorgeous baby, I saw perfection. He smiled and laughed on-time, and his days were filled with happiness. I knew exactly what to do to get that belly-laugh out of him. He crawled and explored. Walked at 13-months and could have much sooner if he had not been afraid to let go of the furniture. He would run to me, arms outstretched, when we ventured out for a neighborhood stroll and he heard me holler his name.

I remember the mornings when I would lift him out of his crib, in the days when we finally made it past the horrible all-night colic, and, oh, how his eyes would light up at the sight of me. His little arms and legs would squirm with excitement ... all because he saw ME. It was the best feeling I had ever known.

To even THINK about the "A-word" in relation to my child felt, for such a long time, as if I were insulting him. He was too wonderful. No, it was not possible.

But something was wrong with my child. He didn't point. He didn't nod. He didn't imitate at all, a sign I know now was a giveaway. Oh, yeah, and he didn't talk.

When we actually got the diagnosis, it was not a surprise. But nor was it any kind of help.

I will never forget the developmental pediatrician -- an "expert" in the field of autism -- who spent some time questioning us and then maybe 5 minutes trying to interact with Daniel.

It was all the time she needed.

Your child meets the diagnostic criteria for autism. Good luck to you because you are going to need it. And now it is time for you to get out of my clinic, because there are many children waiting to see me, and goodness knows I was at least an hour late in seeing you guys.

OK, so those weren't her exact words. But they don't stray too far from the script -- or the feeling she gave me. Gotta love a good bedside manner.

And you can forget that "Welcome to Holland" poem they handed out. Screw Holland, I thought. Take your sentimental BS and shove it. I just want to know WHAT TO DO!!!

But nobody was going to tell me that. Because the one thing most of the white coats won't tell you is that, for the most part, when it comes to autism, they don't have a clue.

I have bounced around the stages of grief and, thankfully, I have found a way to the "other side." I can laugh at a friend's joke. I can get out on a dance floor with some wonderful friends. I can survive what has been the absolute worst year of my life, a year when my very foundation was split, cracked, and pulled from under my feet.

But peace is a relative thing, you might say.

Why am I writing all of this tonight? I am not entirely sure. But it has something to do with a woman who was arrested last week. Her home is probably about 15 minutes from my own.

I know nothing about her other than what has been reported on the news.

She is -- or, rather, was -- an autism mother.

She committed the unthinkable.

I can't even bring myself to link to the stories.

Words fail me.

Many people I know have commented about it -- about the horrible thing she did. Some of them have children on the spectrum; some of them do not. I can't help but notice, generally speaking, that the two groups have very different tones.

Even though my child is on the spectrum -- even though he is severely affected by autism -- I would NEVER suggest that I know what her days were like before she committed this horrible crime, this unimaginable sin. It appears she and her husband did not have many resources -- i.e. "money" -- and any parent of a child on the spectrum can tell you just how essential money is when you are trying to find qualified help for young children with autism. Especially in the South, especially in Texas. Did she have any help? Did she EVER get a break? Her children were young. (It is not clear whether both of them had autism, or just the older child. But either way, did she feel like no matter how hard she tried, she was never going to be able to give them both what they needed?) Were they ever even in school or was she with them 24 hours a day, seven days a week? Did cultural differences make her feel uncomfortable about reaching out to others?

Did she feel isolated? Did she feel entirely alone? Did the stress and the exhaustion and the hopelessness take away every last bit of her sanity?

I am so sad to know that this mother was so desperate, so depressed, so lonely ... and that she lived in a city bordering my own.

It is nauseating.

Yes, I have made some peace with autism.

But I could do so much better.

It is a daily struggle to be all that my child needs. I always feel as if I should do more for him.

It is a CHOICE to find happiness, in whatever ways I can, and it would be much more difficult to make that choice if it weren't for the support of so many mothers who are there to listen and share. Mothers who can understand because they know what it means to REALLY worry about a child.

May God, in whatever form He exists, bless the little souls of those two children. And may He guide us all to the ones we need in our darkest times -- to the people who will keep us from drifting deeper into isolated waters, to the people who will help carry the weight of our sorrows when our backs are close to breaking.


  1. Hi there,

    I've only just recently stumbled across your Blog and wanted to say Hi :) My youngest son was diagnosed with Autism at the age of 2 and for the past 8 months (since he's diagnosis) I'am still trying to accept, still trying to take postive steps forward, still trying to learn, still trying to get resourses and founds to help us, still weeding my way through various types of early interventions and therapies....I just wanted to say your Blog has been a huge support to me personally, although we live in different countries (I'am from Australia) I have found myself nodding my head to your thoughts, your dreams and your realities. Thankyou for sharing your very inspirational and heartwarming Blog :)

    Take care,

  2. I don't know of the news story you are talking about but it sounds devastating :( . I wanted to say though that I relate to so much of this post and I think that you wrote it beautifully. Thankyou for sharing this :)

  3. Hello,
    Your father is the one who first introduced me to your blog. He recently tutored me a few months back and gave me a copy of your blogs. I had been so busy with school and senior year activities that I hadn't had time to post a comment and let you know what I thought about your amazing blogs. Your posts are truly inspirational. Every post has warmth and meaning that is inspirational to all who read it. I shared your blogs with a couple of my friends, and they were amazed at your writing. Thank you for sharing all of your stories!! You have wonderful parents!!!
    Hillary Howorth

  4. Thank you, Peta. You have a BEAUTIFUL blog. I tried to leave a comment yesterday but am not sure it went through. I am so very glad you left me a note. I always love to hear more from moms who can relate, so please feel free to email me personally at any time. Also, I am an open book about Daniel, so ask me as many questions as you might like.
    Your children are absolutely gorgeous.
    Hugs, Leah

  5. Thank you, Jen. It always amazes me when people actually want to read anythign I write. I jsut found your blog and look forward to catching up. Laughed out loud when I saw the one about hiding from your kids when eating a donut!!!! omg -- Have I done that!


  6. Hillary,

    THANK YOU for your sweet words. I am just honored when anyone wants to read what I write. The blog helps me to connect with other moms who can relate to my worries, that is for sure. It gives me a wonderful feeling to know that my words lso ahave meaning to people outside of that group -- and to a YOUNG person nonetheless. Good luck with college this fall!

    HOOK 'EM,

  7. this is an amazing post. i love your writing, as always :)

  8. U r a excellent Blogger:-....i KNOW exactly of what u r saying 2..i still cant or dont know how to make peace with this ( thing called Autism) it sux..it makes u wanna cry, shout, scream, hit..i just sometimes wonder what i personally have done to make God punish me soo...when i c kids @ Burger king when we play...o the difference...when my friends ask to bring my kids over..y do i always bow out..when they want to go swimming y is it my son the only 1 on the shore playing the sand while all the other kids including my dd in the water...??y??y???Glad your folks made it..tell all i said Hello...safe travels..and u take care of yourself..and please know u r not the only 1 in this boat...:(