Why Did I Stop Writing….

6828e7c9770e27979a6b91092c5e2179I get so many emails from people wondering where I am. Emails wondering if Cooper is ok. If I am ok? People that genuinely care about Cooper and his development reach out to me on a daily basis. These emails and messages warm my heart. And I am so thankful for them. It reminds me that Cooper’s journey is helping others. That is amazing.

I can remember the blogs that got me through. I would read them from start to finish in a night while drinking a bottle or two of wine and crying. Autism blogs got me through the first two years.

But then I stopped responding to comments. And emails. I shut down.

I stopped writing. Why?

Quite simply, I didn’t know what to say to people. 

It got to hard to be honest. I forgot how. 

I have reached a point where I don’t know what to say anymore. Writing used to be so therapeutic for me. I loved putting all of my feelings towards autism into one place. And receiving no judgment. This blog was the one place where I could be completely honest about Cooper. Whether I was angry or sad. Or if I had something to celebrate. I could write it down and feel good about it.

One day I hated autism. And the next I could be thankful for the sweet, emotional, curious boy that is Super Cooper. Either way. I wrote with utter honesty. I didn’t hold back. Often I was judged. Or called out for my way of thinking by a stranger. That’s ok.

Because this was my place.

But, something changed. A few months ago I started to feel like I couldn’t be honest anymore. Family and friends didn’t want to hear the truth anymore. The ugly sides of autism got to be a bit much for people. Hell, the ugly sides of autism got to be too much for me.

I started to get insecure about what I wrote. I could no longer say the things I was feeling. I would write a little sweeter than usual. Or I’d sugar coat it. I felt like a fraud.

I wanted to write about what autism did to my marriage. And my relationship with my husband. And ultimately, what lead to my divorce. But I didn’t. I was too scared. I didn’t know how to deal with that level of honesty in real life.

I wanted to write about how Cooper sucks up so much of my energy that I have nothing left over for my other child. Or my job. Or myself. And there are times that I hate him. I hate what he has done to me. How he has changed my life. How my life is hard.

I wanted to write about how I know in my heart that Cooper is never going to speak. He is going to be nonverbal the rest of his life. And I want to be able to say that without people telling me I am wrong.

And I wanted to write about how I blame autism for my insecurities.

How I am sick of optimism. How I want honesty. How I want everyone to settle the F down and accept that fact that Cooper is Cooper. We don’t need to hope that he is going to change. We also don’t need to cure autism. Or carry the torch to cure autism. We just need to be human.

But every time I tried…I couldn’t.

I was paralyzed.

I think the other part had to do with Cooper turning five in December.

I expected his birthday to hit me really hard. I warned my closest friends. I told them I was going to be a mess. I asked for support to get through it. I planned on grieving the little boy I had dreamed of. That’s what I have done for the past 4 years.

I didn’t plan a party. I didn’t even consider having one. Cooper hates parties and crowds. He has no friends. He doesn’t care about presents. Or socializing. Or celebrating. He has no idea what a birthday is. Nor does he care.

The thought of celebrating this year never crossed my mind.

That, in itself, is awful. I’m an awful person.

The days leading up to his birthday I kept waiting for the sadness to wash over me. The depression. But it didn’t come. I didn’t imagine his future. I didn’t imagine what could be. I didn’t hope for it to be different.

Quite honestly, I didn’t think about it at all.

And that in itself depressed the fuck out of me.

What kind of person blocks out their child’s birthday? I think my mind had to block it out. I couldn’t handle it this year. Five years old is a biggie. We should be doing so many things together. I should be watching him grow up. But I am not.

Cooper is just here.

Cooper’s development is trudging along. I would say socially he is at the age of a 2 year old. And that might be a little optimistic. Now, if I was to say that to family or friends they would tell me I was being negative. I am not. It is the truth. He still wears a diaper 100% of the time. He has no words. He flaps. And hits. And squeals.

I have learned that he is severely autistic. Or low functioning on the spectrum.

That was a blow. It truly, truly was.

I have the severely autistic kid. God that sucks. Right? Other autism moms are celebrating victories and hearing words and I’m just over here on pity party island digging poop out of my kids butt.

So…ultimately…I don’t write because I don’t know what to say to help people anymore. I truly believed that Cooper was going to get better. I thought he would learn to speak and get through this. I thought we would be the family that came out the other side. We would conquer autism. We would find Cooper’s voice.

I no longer believe that is going to happen in the traditional sense.

I think my Cooper journey has changed. It was about survival. Straight up diagnosis and survival.  Now it is about adaptation and acceptance.

Onto phase two of this journey….And I promise to write more. Super Cooper’s journey is priceless and needs to be shared!

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21 thoughts on “Why Did I Stop Writing….

  1. Kate, I think you help people by just saying what you feel – good, bad or ugly! A lot of us don’t have the gift you have for putting down in words what we all think or know but are too afraid to share because, let’s face it, unless you live it, you can’t understand. I am so very sorry to hear about your divorce. On top of everything you are already experiencing, you seriously must be the strongest momma ever! Thank you for being you, for sharing and for coming back. I missed your writing!!

  2. I’m certain that we’ve all gone throught the range of emotions and a lot of them are very private reflections on our worth and future. Your worth has never changed but the future is yours to create. We never accept anything less than the best for our boy, fire the idiots, complain to the authorities if necessary, and build a future for him where we can go to the grave with some peace that he will be cared for. We’re working on building an accomodation group so families can band together and provide a home for similar children.

  3. Do you know how much I have waited to hear from you. Praying for your little boy and you. I am right there with you with the non verbal severely autistic kid. You know that. My arms are here for you over the miles, to hold you, to help you and to tell you you are going to be ok. Can we keep journeying together through this awful and tough stuff? I love you!

  4. Kate, I’m so glad you came back. You were greatly missed. I had no idea about your divorce/marriage. I am so sorry. Your honesty and gift with words helps all of us. Please don’t stop and keep doing what you do!

  5. Thanks for letting us hear from you. Just so you know, your writings help me even though I’m 27 years into the journey. Your willingness to let me peak into the “bad & ugly” help me. I hold back every time that I write, not wanting to put the personal out there about husband / marriage failure / divorce / personal failure / bad decisions, etc. It often seems that taking care of my Jess has made me old before my time, or at least it feels that way. Nothing prepares us for this, and it can be different every day. I always felt that the only way I could get through life was literally one day at a time.

    I have felt the most at peace since I accepted our situation last fall. This is what it is.

  6. My son is 4. He had words until 18 months and then lost all of it. I wait every day hoping to hear it again. I was convinced I would, but as he gets older I find myself thinking that he won’t talk again. I found your blog when he was diagnosed and it helped me so much ,as Cooper seems similar to my Anthony. I am in the acceptance phase of everything, but I still look forward to your posts. You put into words what I feel. Friends and family have been very supportive, but they always feel the need to tell me about the HF kids on the spectrum they know. I smile politely, but I really want to say that’s wonderful, but mine may be LF his whole life. I feel you understand that and it’s nice to know a person out there who can share that feeling. Thank you for sharing your’s and Cooper’s journey.

    • I often wonder what it would have been like if Cooper talked when he was a baby and then lost the skill….It is crushing whenever he regresses. Hugs to you! I totally understand what you are feeling. I’m here for you too!

  7. I too had wondered and checked the blog many times. I am so, so sorry to hear about your divorce. That hurts and is so hard. Your attitude amazes me – I hope you will keep writing the blog and sharing Cooper’s story, because it MATTERS. He MATTERS. All the best to you. And a big hug.

  8. I was wondering where you were. I’m glad you’re back. Over the years you have said some truly beautiful things…things that have moved me greatly. I don’t know what it’s like, I didn’t know everything you were going through, I don’t know now, but I’m pulling for you, praying for you. I love your perspective and how you are approaching this. I know there is a lot of ugly, I know it because you’ve said it…but I think you have helped a great many people to know they are human, with human emotions, human reactions, human desires and wishes and dreams. Your voice is important! I am thinking of you! Take care of yourself…

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