December 8, 2005


During the DAN! Conference a month or so ago I heard Jaquelyn McCandless speak. She said that the number one thing that pregnant women can do to prevent autism in the child that she is carrying is to avoid milk. My first thought was, "Well there is one more way I screwed my son". I could not get enough milk when I was pregnant, and that was just one more thing I could add to the long list of things that I have done that made me feel like I failed Chandler.

I know that I am not alone in this, as it is a frequent topic of conversation when parents of autistic children gather in a safe place where they can share how they really feel.

If only I had taken better care of myself when I was pregnant.
If only I had not eaten tuna.
If only I had not taken terbutaline.
If only I had breastfeed.
If only I had not vaccinated.
If only I had asked for mercury free shots.
If only I had been paying closer attention.
If only I would have listened.
If only I had not waited so long to get help.
If only I had tried this intervention first instead of last.
If only I had known.
If only I was stronger for him now.
If only....

There is so much guilt to go around, and after more than a year and a half I am only now starting to feel some freedom from it. Surprisingly the freedom from the guilt does not come during the times Chandler makes big improvements, but when I am able to focus on the fact that God had a plan for Chandler to become autistic, has a plan for where Chandler will go from here and has a plan for our family that will make us better people, autism or no autism. Specifically, in that plan, both in the painful parts and in the happy parts, God has something really rich for us, something of true beauty that we would not have been able to see were it not for the specific road he had set us on. It is when I am able to be that person of focus, that I can see our family’s story with perspective, and know that even all my mistakes will be used for beautiful things, if I can yield them to God.

I know that this week is one of those yielded times for me because when I read my email from Children of Destiny this morning I didn't feel that small knife turning in my gut when the subject of my own guilt was brought up. I actually felt joyful and grateful.

Thursday, December 8, 2005

Let us draw near to God with a sincere heart in full assurance of faith, having our hearts sprinkled to cleanse us from a guilty conscience and having our bodies washed with pure water. (Hebrews 10:22, NIV)


Heavenly Father,
We thank you for all that you do for us. We especially thank you for cleansing our conscience and our bodies. We pray that you would cleanse us of all guilt that we may feel because of ________’s autism. So often we worry that we may not be doing the right interventions for him/her and sometimes feel guilty. However, as we draw near to you and you show us which path to take, we are set free. So, help us draw near to you. We pray too that our bodies would be washed so that we would be strong and healthy. We again thank you for the destiny that _______ has in you. We pray that your plans for him/her would manifest today. We pray that your anointing would rest on him/her and bring new levels of healing and development to his/her brain. We thank you for each new day, and for the restoration you bring with it.
In Jesus’ name,
The idea that God wants me to be free from my guilt, even well deserved guilt, is both humbling and freeing. I want to know that kind of freedom as I walk through life and as I parent my special needs son. I want to have that freedom from the past so that I can be available to make my boys present all that it can be for them.

I feel like this is one of those moments when I can see the person that I am meant to be, but I know myself well enough to know that I forget all to easily what good things are possible when I really listen to God allow him to give me perspective. So I write this down and publish it out loud so that in six months time when I am freaking out because I am focused on my failures and the failures of others and the insurmountable odds, you, my loyal readers, can cut and paste this blog post into an email and remind me that when I am yielded to God what freedom and humility and joy are possible. Regardless of the circumstances.

If you are a person of faith with an autistic child and you are not currently on the Children of Destiny mailing list, get on it.


Wade Rankin said...

This is a great post, Ginger.

It’s so ironic that some people say that we, who believe environmental factors may have triggered our children’s autism, only believe that because we feel guilt because we did not produce genetically perfect children. They just don’t understand that most of us feel no guilt at all about genes we can’t control, but we do feel guilty about not learning more of the dangers to which we exposed our children. Thanks for putting that guilt in its proper perspective.

Moi ;) said...

13 years ago, I didn't eat tuna (still don't). Ugh. :PPP

I DID all the right things I was supposed to do when I was pregnant. It Made No Difference. Bug is still autistic.

In 1992, the internets were in their infant stage ;) - 99.9% of homes did not have personal computers. I had one in my office that had a 2400 modem, lol. (Talk about perspective!)

No one told us anything about the mercury in vaccines. You see, no one realized how many kids were being affected by the doubling of the thimerosal in 1991 until years AFTER that. The kids born in the early 1990s are the ones who were not able to access the interventions, the therapies. We Did Not KNOW.

Bug is and will be my only child. I did not know what normal development looked like, I had no other kids to compare him to, none of my friends did, either. I trusted the doctors (whom I so carefully selected) and THEY were the ones who were supposed to tell us about this stuff. My GYNECOLOGIST told me she thought something was wrong with Bug, when he was 2. My GYNO. Is there something wrong with that picture?

If there had been a buzz about ANYTHING back in 1992....but there wasn' 1991 when they took thimerosal out of the DPT, you started hearing things....

THAT is what is unconscionable. Because the government knew about it way before that.....

I feel no guilt. NO parent should feel guilt. I feel ANGER. To this very day, I am Angry. Angry that the drug companies care so little about the people who make them so rich....that the government would cover for them.....etc. etc. etc.

We should ALL be pissed as hell. Because it's the only way anything ever gets done. When people get mad enough to DO something.

Whether this is "God's plan" or not, the evil that has been done to our kids - by MAN - will come back at them in spades later. That's a definite.

Kristina Chew said...

Stop! The guilt thing comes to us also thanks to the enduring influence of Bettelheim and the refrigerator mother theory. We've learned to let go, but there are myriads of cultural stereotypes out there saying "it's our fault."

Offer it up, as my mother-in-law says.

Derek's Mommy said...

I'm with Moi, I did it all "right" (is there really a right way?), I took all my vitamins, I had a homebirth with no drugs, and breastfed. Yet Derek was born with autism.

I'm angry too. I'm angry that mainstream media and most mainstream doctors pooh-pooh the idea of vaccine and enviromental links. I'm angry that most states have terrible coverage for services ranging from ABA to biomedical. I'm angry that I feel like I talk until I'm blue in the face and I'm just a crazy wacko in the eyes of most.

The only thing I feel guilty about now, is not trying hard enough to advocate for my son.

María Luján said...

Thank you for posting a so wonderful pray. You reproduced exactly our feelings ( my husband´s and mine) about our son.
As you say, I always think in a plan for us so , following our Catholic faith, we accept our probation to do our best for our son.
Thank you from the bottom of my heart
María Luján