So What's The End Game Here….
I think about that a lot. How is this blog going to end?
When I first realized Cooper was delayed I became obsessed with finding another kiddo like him. And to take it one step father onto the crazy train that I was riding…I wanted that kid to be healed. Or fixed. Or however you want to put it.
I needed to find a kid that was nonverbal at 3 who ended up talking and leading a normal life.
Now, don’t freak out on me here…but I have yet to find that kid. And I gave up looking since Cooper was diagnosed. My heart couldn’t take it anymore. That shit’s emotionally draining. The ups and downs and hopes and blah, blah, blah.
I would find a blog and read the whole entire thing from start to finish.
I remember one time specifically.
I was hiding in the basement and I stumbled upon this post on Bringing Up Boys. This women doesn’t blog anymore and you can see by the date that she hasn’t since May of 2013. This post was the end for me. It was the realest thing I have ever read. She says, “I wish I could tell you that Cooper has made some miraculous recovery.” Yes, her son is named Cooper too. Maybe that’s why I love it so much.
And then she wrote…”but he’s not.”
I read her whole freaking blog that night. I remember she would blog about other topics or her NT kids and I would get mad. I needed more about her Cooper. I needed to know exactly what he was like. I became obsessed.
And then I remember I made a deal with myself. I was like…‘they way she is describing her Cooper sounds a million times better than what I could ever imagine my Cooper’s life to be.’ I’ll take it. Please God let my Cooper turn out ok. I don’t need him to be perfect. Or the smartest or whatever. I just need him to be ok. Not perfect. Just…ok.
I want my blog to be hope for people. I have a lot of readers. I can see that in my analytics. And I can also see when when a person reads my blog from start to finish. And I ALWAYS picture them sitting in a big recliner with a glass of wine or cup of coffee. It’s usually a mom in my mind. And she’s varying between crying and laughing and hoping. Maybe her child is nonverbal. Or Autistic. Or maybe even has a hearing loss. For whatever reason she found me and Cooper’s story.
And she’s looking for hope. God I wish I could give that to her. I want to be that for her.
But I don’t know if I am there yet.
Cooper is going to have autism for the rest of his life.
It’s not fucking fair. Sorry. It’s just such a heavy diagnosis to put on a 3 year old. He’s just a baby and he has this thing…this stigma…that will ALWAYS be with him.
He will be autistic at 6 and 10 and 40. It won’t go away. As much as I hope it just won’t.
Cooper had an amazing week and then Thursday he had meltdown after meltdown. He was exhausted and he couldn’t take it anymore. I felt like saying. “Hello autism. Oh, how I haven’t missed you.”
I don’t know what the end game is here. When do I allow myself to accept that that his future could be nonverbal one. He might not have friends. Or a girlfriend. He might never care about life.
Someday I want to post on here that we made it. That my family survived autism. I want to say that Cooper is thriving and that he has the most loving and protective brother ever. I want to say that my marriage is so much stronger because of this. And that I wouldn’t have changed it for a second. And that I wouldn’t change Cooper.
I can’t see it yet friends. But I’m sure as hell trying.
So hang on with me. I even promise to throw in a little hope now and then.
And you know my son is about to turn six and we are still struggling. He is STILL in nappies, STILL non verbal, STILL needing me to dress him, wipe him and do everything I did when he was a baby.
But hopefully people find hope in my blog too. We had our first word last week. Struggling to keep it this week. But tomorrow we keep trying. You are doing a wonderful job. And looking back you will see so many positives yourself. Cooper will do great…I just know it! I know one day I will be reading at what he has said, what creations he has made at school and how he has friends. And until then…I will stick with you, pray for you all and enjoy your blog 🙂 keep writing 🙂
First…I read that he said his first word! I seriously did a happy dance for you in my living room. I call that a victory. Second, I can relate to so much that you write as well. We are a million miles apart and going through something so similar. Sigh. Life is so hard sometimes. Hugs friend!
I read every blog you post. I cheer the small victories that Cooper makes (like making the transition in his new classroom) with you. I cry with you when he has a rough day. But hang in there. This journey is different than the normal path parents follow, but that doesn’t mean it has to be less fulfilled. There are stories of non-verbal children finding their “voice” by typing and using PECS (picture exchange communication systems). As technology continues to improve the voiceless has the chance to speak. As they continue to research autism, they find new things all the time to help those people on the spectrum. Don’t lose faith in Cooper… and yourself. All things are still possible.
Thanks friend!
I enjoy your blog very much :)! We are both on this journey together. Juli will also always be autistic and I’m ok with that. Knowing there are other moms like you out there really helps. I hope my blog can help another mom feel “not alone”. You are a great mom and I look forward to continuing on this blogging journey with you, xoxo
I enjoy yours as well!! I can think of so many moments where I have read a blog post and felt helped. I think words from other moms are way more reassuring then a book on autism. Hugs!
I wish I had a magic ball to look into to see the future for you and Cooper so you would have something to cling to. All I can do is to just say that by reading your blog you have him in a good program to help him. He’s probably being challenged at school now and by the end of the week he’s going to lose it. Friday’s I still walk on egg shells at my house. My son will always be Autistic and some days that drives me crazy too. End game? Have you heard of Carly? She is Autistic, has Apraxia and OCD and is completely non-verbal. She is in first year University and wants to be a journalist. She is also determined to learn to be able to speak. She is amazing and when you read her story she gave her parents a run for their money. Here is her Facebook page https://www.facebook.com/carlysvoice
Awesome! Checking her out now!
She also made a video that she stars in to show how it feels to be autistic nonverbal and having sensory issues trying to go out with your dad and your sister at a café http://www.carlyscafe.com/ it’s really awesome and really puts things into perspective
It’s a very hard job being a parent of a special needs child. Your doing a great job. Hang in there. It seems to me your a doing it right and have him in a program to help. Stay strong.
Hi Katie. I started to read your blog from the beginning recently. You came in my suggested pages on facebook. Anyways I’m just reading on your entry on Oct 2014 so I don’t know what happens later, but before I forget I wanted to tell you about a man of 25 years old who is on one of my Disney groups and he said he wasn’t verbal until he was 5 if I remembered correctly!, anyways I just thought to tell you because you were talking about the future. By the way I have a Cooper as well with physical ” disabilities” and I love to read your blog because I can apply a lot of of your thoughts to our situation. The other day I shared your blog to the group of my son diagnosis ABS. Thank you for writing and I hope you don’t stop!