I Never Lost My Son…In A Way, It Felt Like I Never Had Him.

I want to talk about the first three years of Cooper’s life because they were the saddest of mine. I had dreamt of becoming a mother for years. It was the thing I wanted most in my life. And then in the blink of an eye I was a mama to a beautiful, healthy baby boy.  Except from day one something wasn’t right. Only, I couldn’t describe it and to make it worse it was like no one believed me.

My son didn’t need me for anything besides a bottle and a diaper change. In a newborn this might be OK except he didn’t want to be held or touched. He was never content. By nine months old he was watching television obsessively. I remember sitting in our living room chair and watching him…studying his every move. I could physically see him. His body was there. I could reach out and touch him. But beyond that he was like a robot. He wouldn’t look away from the television. He didn’t laugh or play. He didn’t interact. If the TV was off he would scream and self-injure. I felt like a failure. What seemingly healthy child only wants to watch television? What child doesn’t even notice their mother?  My heart was broken and I had no one to talk to about it. Doctors told me my son was fine. They told me to try harder. And I did…only it drove me crazy.

I became a frantic mother trying to figure out ways to get my son to interact with me. You name the game, activity, therapy…I tried it. I tried every single toddler activity out there. They all failed. No matter what I did I couldn’t get him to interact with me. And to make it worse he didn’t come to me for hugs or tickles either. In fact, he didn’t come to me at all. There were days where I doubted if he even knew I was there. The harder I tried the worse it got.

Looking back our relationship was almost dysfunctional. The more I needed him the less he needed me.

At age 3 1/2 , on my third Mother’s Day, Cooper built a block tower with me. It lasted less than a minute. It was the first activity we had ever done together. After he knocked it over and ran away laughing I sobbed for two days. I saw a glimpse of what our relationship should’ve been. Cooper didn’t play with me again for over a year.

In that moment I had to let go of what I thought our relationship was supposed to be. I realized and started to accept that my purpose was more of a caregiver; not a mother. I was there to change his diaper, feed him and drive him to appointments. And yes, my heart was broken. I will not lie about that. My son had the kind of Autism that was severe. No matter what I did I couldn’t reach him. And I felt that I had tried everything…and still failed.

Cooper is now six and it is MUCH better. There is hope people. Cooper now interacts with me every single day on some level. He shows me his trains on his Kindle. He laughs. He dances. We go for walks. I tickle him and wrestle with him.

My role as Cooper’s mother is still more that of a caregiver…but it is getting better. And now, with every interaction, my heart bursts with joy. See, I changed my mindset about it. I used to dwell on everything I was missing. Now, I focus on the improvements that I am getting. It took me six years to be able to do that. And I’m still learning. My advice is to be patient with yourself. This is hard stuff.

The Beginning is the Hardest

I want to talk about the first three years of Cooper’s life because they were the saddest and most confusing of mine. I had dreamt of becoming a mother for years. It was the thing I wanted most in my life. And then in the blink of an eye I was a mama to a beautiful, healthy baby boy. Except from day one something wasn’t right. Only, I couldn’t describe it and to make it worse, it was like no one believed me.

My son didn’t need me for anything besides a bottle and a diaper change. In a newborn this might be OK except he didn’t want to be held or touched. He was never content. By nine months old he was watching television obsessively.

I remember sitting in our living room chair and watching him…studying his every move. I could physically see him. His body was there. I could reach out and touch him. But beyond that he was like a robot. He wouldn’t look away from the television. He didn’t laugh or play. He didn’t interact. If the TV was off he would scream and self-injure. I felt like a failure. What seemingly healthy child only wants to watch television? What child doesn’t even notice their mother? My heart was broken and I had no one to talk to about it. Doctors told me my son was fine. They told me to try harder. And I did…only it drove me crazy.

Full post: https://www.findingcoopersvoice.com/2017/05/01/5499/

#autism

Posted by Finding Cooper's Voice on Monday, May 1, 2017

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Comments

  • Ana Marcyan

    May 1, 2017 at 6:55 pm
    Reply

    I had a devastating night yesterday. My heart broke for the millionth time...thank you for the blog...it captured the utter defeat of our lives as […] Read MoreI had a devastating night yesterday. My heart broke for the millionth time...thank you for the blog...it captured the utter defeat of our lives as our son becomes more impossible. The doors to hope closed last night. that is all I can say at this moment. Read Less

  • Keith (UK)

    May 13, 2017 at 7:29 am
    Reply

    Our non-verbal son David (severe autism ADHD, profound learning disability) is a handsome and very tall 12 yr old. I'm a trainer with the Challenging […] Read MoreOur non-verbal son David (severe autism ADHD, profound learning disability) is a handsome and very tall 12 yr old. I'm a trainer with the Challenging Behaviour Foundation. During one session with parent carers I spoke of our struggles with supermarket shopping. David had grown and wouldn't fit in the trolley any more. Another parent said try a wheelchair. I said that he didn't have a physical disability. It worked a treat! The shop have wheelchairs with shopping baskets in front. David was comfortable being wheeled around an ever changing scene and we could get the shopping done without him pulling stuff off the shelves, running away or throwing himself to the ground and refusing to move. Simple idea but has made this stressful task tolerable. Enjoy your blog. Read Less

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Finding Cooper's Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you're never alone in the struggles you face. And once you find your people, your allies, your village....all the challenges and struggles will seem just a little bit easier. Welcome to my page!

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When my son was first diagnosed with autism no one was talking about it. Autism was hidden. I vow to change that.
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