Posted by: debstake | March 24, 2009

Then and Now…

I have talked at great length about JR, the very reason for my involvement with blogs and the autism movement to begin with. I have talked about Samantha; JR’s older sister and I have talked some about my better half. It amazes me how much the spouse slips from the main focus when that first child is born. Add to that a child who will regress to eventually bloom like a rose, at a later time and with the aid of so many I would be hard pressed to remember them all.  It’s a wonder the spouse (typically the husband) doesn’t lose all identity. The person who can retain their self in all this has a healthy sense of self.

It is very easy to lose yourself in times of trial. When the focus is on the trial or the cause of the trial things get distorted. The “cause” of JR’s autism and my focus on it almost drove me over the edge and the group I had on yahoo was my therapy for dealing with the anger and rage I was feeling toward those responsible for his damage and those responsible for the cover up.

So much has changed in me, personally and the dynamics of my family. We were not in any way prepared for this autism, but again how does one prepare for this? It’s like a death of a beloved parent, it doesn’t matter how much time you have to “prepare”, whether it be a long drawn out illness or a sudden death, you never truly are prepared for it.

At one time I perceived autism as just that, a death. Certainly not in the physical sense but in every other aspect what I as a parent went through when autism became a daily word in my life wasn’t any different than the emotions I went through when my dad passed on. It is said there are five stages of grief. A website that contains this information can be found HERE. The five stages are:

  1. Numbness and denial
  2. Yearnings and anger
  3. Emotional despair, sadness and withdrawal
  4. Reorganization
  5. Letting go and Moving On

Now as a mom of a child who has autism, I remember as though it were yesterday going thru stages 1 thru 3 in pretty short order. Something like 3 weeks. The anger was directed at God not JR. I blamed God for a very long time for what happened to JR. It wasn’t until I realized that God didn’t cause this, but rather man’s own greed that I was able to redirect the anger to the group it rightly belonged to. But that anger is very real whether or not the person taken away from you dies in the literal sense or in a metaphorical sense. And along with the anger a yearning to turn back the clock in order to have things as they were is very real. Reorganization came to me about 3 months after JR was diagnosed. It was at that time that I realized there wasn’t anyone within the social services area that cares one wit about my son or that they were going to do anything to help. When I “reorgnized” my thinking on this was when I took a very pro-active approach to helping him myself. I began by writing an e-mail to then Governor Tom Ridge. After waiting for 3 months for services and realizing my caseworker at the MH/MR offices was incompetent to do the job she was hired for I knew I had to do something. So I wrote Tom Ridge and appealed to his sense of fairness. Many people don’t know but Ridge lost most if not all of his hearing in the Korean war. He was able to over come his own disability and my request was very simple. Give me the tools to help my son over come his own. I wrote this e-mail to him on December 4 2000. On Janurary 4 2001 I had the director of special education services on the phone with me asking what I needed. This began JR’s journey to recovery. When that call came to me was when I felt empowered to help my son. It was that day that I began moving on and letting go.

I have matured in ways that I never knew were possible. Because of my children, because of my husband, because of the circumstances that we all found ourselve in and because of the strength we derive from each other we have survived and flourished in more ways than I can count. It is much easier to walk this walk when you have others walking with you.


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