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Tuesday, October 25, 2011

GBE2 Challenge: Ownership

Once upon a time, mama had a life outside of kids.

A little bit of a late bloomer, I'd finally come into my own in my late twenties. I started law school, and for the first time in my life was actually fascinated by the content of my classes. My husband, also a lawyer, and I married after my second year, and we were excited about the prospect of being YUPPIES for a while before starting our family.

Yes, of course, we most certainly were going to have a family. We are both family-oriented, and, truthfully, I expected that I would be a mother my entire life.

One Halloween day, shortly after completing law school, I learned that starting a family was to happen sooner rather than later. It was unexpected, and, yet, we were both happy. Okay, so our plan would have to be revised. I'd have to start my legal practice a few years later than expected. We can do this! I dug into that basket of Halloween candy and toasted my little one with a Milky Way (SShhhh! I did NOT just admit to that!) and abruptly changed the course of our lives.

By the time I went into the hospital to have our older son, I was mentally a card-carrying memeber of the Parent-Teacher-Student Association. I envisioned the next few years full of happy Gymboree classes, playgroups, sticky food, slurpy kisses and, yes, the weather was always sunny. Those were my notions. None of them came true.

We had been working up to a serious diagnosis for our older son for nearly two years by the time we learned of his autism. My head was still in the clouds as I walked into the doctor's office. Our son was a bundle of energy, running from the door to the sink and distracted only by things that were round and green.

"Well," I said defensively to the psychologist evaluating him. "What child WOULDN'T play with a sink in a small room?" He said most kids would not. To this day, I disagree. lol.

He pulled out bubbles. Those aren't really our son's "thing."

"Not every kid likes bubbles," I offered. Yes, I was told. Most kids like bubbles.

As our son paced from sink to door to sink to door, the psychologist would pull from his boring bag more boring toys. Obviously, I thought, someone needed to school him on what was considered fun these days by kids. However, when random green object came out of the bag--and preferably round and green--our son would stop dead in his tracks. It was as though the toy had some magic pull to him.

"Green is his favorite color." I offered. "He loves it."

"Most kids don't love a color as intensely as he does," I was told.

Oh, COME ON! Can't a kid just like a color without it leading to a diagnosis? Seriously fellow?

I had decided that I didn't like this man. And, when he so rudely diagnosed our son on the spectrum of autism, told us that the rate of mental retardation that accompanies the diagnosis was over 80% and that this was a life-long condition with which we would be struggling. Well, I thought he needed a refresher course in child development.

Don't get me wrong, I cried. I cried a deep, mournful cry that came from my core. However, part of that pain was because this jerk had his facts wrong. And, I was going to fight it. Go ahead, Early Intervention. Begin your bazillion hours of therapy in my home all day long. It can only help. But I'm not telling a soul about this diagnosis until our son has been given the chance to prove it wrong!

I buried myself into his intervention. I stayed up late at night researching treatment for autism, sleeplessness, chronic gastric issues as well as his sensory and speech issues. The autism community sees autism as a body in distress--reactive to affronts that have been made to an already weakened immune system and unable to
absorb them. I agreed. I dove into the theory, and I started throwing every natural remedy I could find to help brain function, motor coordination, strengthen his immunity, detox his body, nourish his gut...oh, I sure was focused!

All the while, therapies were being conducted in our home, and, when I'd see our son acting spacey or a little off, a red flag would go off in my mind. What's causing that? What's the pollen count today--we all know that he is sensitive to pollen. Did he sleep last night? He didn't eat anything he shouldn't have, did he?
But for any of the above circumstances, I know this kid can do what is being asked of him!

This went on for years. I think, during most of that time, we were all on edge. And, I'm not sure that any one moment shed light on the fact that this was no way for a little boy to live. However, I eventually saw that he was not a machine. He wasn't a simple case of input = output. He was living, breathing and THINKING all on his own. He had a say in his day, also.

Slowly, hesitantly, very cautiously, I took off my cape.

I stopped trying to cure every little thing about him, and I sat back and let it be. I couldn't will this child to live a certain way. Developmentally delayed or not, he was already living his life. He had opinions about those therapies. Sometimes, he didn't want to do it. Sometimes, he couldn't do it. Sometimes, his challenges got the best of him.

Watching him, seeing him as a person--HIS OWN person, I began to take ownmership of the situation. I realized that the legal career I'd worked so hard for was not going to happen. I'm a mom, and I'm going to be a special mom who has a buddy by her side a bit longer than most people. And the process of watching this child, learning who he is as he develops through life and within his own challenges has been part of my lesson in ownership.

Splashing this past week in a pool.


It wasn't long ago, when our son had escaped from our home and run down the street to a favored spot in a neighboring house's yard, that we decided we needed to tell people about him. Surely they already knew, but they needed to hear it from us. It was time.

There was going to be no beating autism in our home. We were more in an endurance battle, learning how to cope and grow with this child--disability and all. That distasteful fellow in the doctor's office years ago was right. I had been too defensive to process and take ownership of the situation that confronted me.

What did I learn from a process that took a few years? I learned that taking ownership of a situation, as distasteful as it might be to you, is ever so helpful in moving forward to a better place.

Halloween haride with buddy Kayla, our res hab worker.


Today, I am as honest as I can be about life with special needs, and I hope to show those on the path behind me that I wasn't always blogging it from any computer I could find. It was a process. I wish all of you luck with yours!


With his dad on his favorite carousel.

13 comments:

  1. This was a wonderful take on ownership. I don't blame you for trying to get around the diagnosis of autism. I agree that once you have accepted a certain situation and see it for what it is, then you can move forward.

    I hope you're off to a good start this morning and get a chance to escape into your mom cave for a short while this afternoon. 8)

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  2. I remember the day you posted about T's diagnosis on BiJ as clearly as anything. What rubbish I thought. Obviously a boy would choose to play in a sink. Ben certainly would and he's not autistic..... Oh, how that message echoed round my head for years, as I denied and excused and eventually admitted.

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  3. I was so defensive about that darned sink! LOLOL! Still am a little, but as a whole I see that the lack of skill I was really responding to was the psychologists poor bedside manner. I completely denied our son's issues--whatever they were but they sure weren't autism!

    It makes for a good chuckle now, but, my, it took a while to own who he was, who we were as a family and who I was going to be moving forward in life as his mother.

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  4. I had to do Ben's whole history from birthday for his new Educational Psychologist last week. As I was telling it it occurred to me that I used to cry my way through it - but not any more. I think I have finally come to a real acceptance.

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  5. I can relate to wanting the diagnosis to be wrong as well as the decision to own the situation rather than be owned by it. Very well said!

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  6. And who wouldn't know it was wrong? I would have totally done the same thing. I would have looked every which way but straight at it. Lucky for him you decided to own it and look for HIS best. Great post.

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  7. Ruth, I guess I can say that I'm happy for you. I'm sorry that you had to reach it at all; however the point of acceptance is a much more positive place for everyone. Keep me in the loop as you move the process of school for next year.

    Thanks to you all for reading. I appreciate the audience and the comments.

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  8. I really liked your take on this. I like how you show the progression of your acceptance. In my own life, I came from this from the other end. I KNEW that something was just a little off with my child. I wasn't sure what, but I knew that he was different from my older two. No one would listen to me. It wasn't until he entered school and I had documented evidence from teachers and counselors that anyone began to listen and we reached his diagnosis from there. And once I knew...it was this huge weight lifted off of us because we knew we could move forward from there. I also love reading your blogs....well done!

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  9. Yes, I understand the feeling of relief and validation when a suspected problem is finally diagnosed. I've had that with several of our son's medical conditions and also with our younger son's developmental issues. With our older son, I knew he had issues the day he was born. I knew it. I was just a young mom, and that thought felt so taboo that I wasn't ready to accept it. As the years wore on and he presented with more and more delays, I knew there would be a diagnosis...I never suspected autism. I was ignorant. I was blissfully in love. And, I was completely blindsided by that diagnosis.

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  10. YUP first chapter of your first book..yup

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  11. "Today, I am as honest as I can be about life with special needs..."

    Your whole blog was a wonderful testament to ownership, but that sentence resonated strongly because I think that all of us, no matter our individual challenges, grow best when we are able to simply be as honest as we can be about ourselves and our lives.

    I'm sometimes wonderful, sometimes I suck. I'm happy and positive and impatient and restless. Calm and anxious. Ridiculously cheerful and grouchy as hell. It's all a part of the truth and I'm fine with the whole package. I own it and because I do, I can be fine with it.

    I love your blog and just I adore you.

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  12. Taking off the cape was the most heroic act of all!

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  13. Hi, Mike! Thanks for stopping by! I always appreciate your words. Taking off the cape, for me, was scary! My peers in the autism community may see it as giving up on recovery. Sigh. I was just soo crazt~immersed in the idea of recovery that his quality of life suffered. I stopped, but I was also scared that I might just be givingg up on the potential I can bring from him. Instead, I opted to let him bring his own potential. While not a popular move, it fit our family. Our son is mentally intact. Even if he'Aa nonverbal, I have to validate the thoughts that are developing inside him.

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