This is Going to be Okay…

Most days I think this is going to be alright. I can give my autistic, nonverbal son the best life ever. He can live with mom and dad forever and we will be OK. I tell myself I can do this. And I’ll find someone to care for him after I’m gone. I am a fighter. I will never give up. But even more than that I am an advocate for a little boy with autism that deserves the best life possible.  And I’ve quickly realized that when you have a kiddo with a disability most things come with a fight. It’s strange. I’m fighting for him to be included. For healthcare. For supports. To be noticed and taken seriously. That’s my life. I accept that.

Cooper and I are an unbelievable team. I refuse to fail.

But then there are some days where the fear overtakes me. Something will happen, a 30 minute meltdown maybe, and I’ll spiral into a serious fear. I’ll start thinking about how vulnerable Cooper is and how the world will never be able to accommodate his disability. The world is not ready for severe autism. At least not yet. I’ll think about how he doesn’t understand safety or danger. How he is getting bigger every single day. How some of his needs seem to be getting more severe. I wonder how am I going to be able to watch over this boy when he becomes a man. I worry about shaving his face? And possibly changing and adult mans diapers. Someday my little peanut is going to be 200 pounds. And while I feel strong now I know that someday his size is going to overtake me. It’s a scary reality. What if there comes a point when I can no longer care for him.

Most parents are planning for college and I’m over here thinking about lifelong care. And while I choose to be the greatest optimist possible the weight of that often catches up to me. This is hard stuff. No denying that.

I walk the fine line of hope and reality every single day of my life. And quite often, the low points come out of nowhere. Grief is not linear my friends. It sneaks up when you least expect it.

And then tonight I came home from a much needed night out with my son’s dad and saw my beautiful boys playing outside at Grandpa and Grandma’s. Sawyer was biking and telling stories about his night and sweet Cooper was chasing after him laughing. It was so blissful. So natural. And it often doesn’t happen in my world. I instantly teared up.

Nights like this remind me it’s going to be OK because Cooper is surrounded by so much love. His village will MAKE his world be OK. Seeing how much he has changed our lives takes my breath away sometimes.

Autism may be hard. I’ll never deny that. But the fierce love it has brought into all of our lives is unbelievable.

 

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  • Ali

    July 13, 2017 at 6:32 pm
    Reply

    Wow. You seriously just put into words every thought that goes through my head. I have a 3 year old autistic daughter and a 4 […] Read MoreWow. You seriously just put into words every thought that goes through my head. I have a 3 year old autistic daughter and a 4 year old non verbal autistic son and I think those exact thoughts. Thank you-I am not alone ❤️ Read Less

  • April

    July 13, 2017 at 7:32 pm
    Reply

    Just found your blog through a post on a special needs Moms Facebook group I am part of. Reading your posts, your descriptions...they remind […] Read MoreJust found your blog through a post on a special needs Moms Facebook group I am part of. Reading your posts, your descriptions...they remind me of my son when he was younger...and you articulate so well the world of autism. Thank you. My son still does the wandering in the beach...we go on vacation on Cape Cod every summer. I pick more isolated and scenic, private beaches. He used to play with the water, but as he has gotten older, he just likes to wander up and down the coast. I have never really asked him why. I may try to this time. Read Less

  • Linda

    July 18, 2017 at 10:49 pm
    Reply

    He reminds me of my son Patrick who is autistic and non-verbal. I got him potty trained by having him go commando (no pull-up) […] Read MoreHe reminds me of my son Patrick who is autistic and non-verbal. I got him potty trained by having him go commando (no pull-up) when he was 5 years old. It took me a summer vacation. I would just pull him into the bathroom when he started to go. He learns by doing. I must admit I would scream a little bit each time I caught him peeing, and he may of just started using the toilet so that I would stop-LOL. Potty training him is one of my happiest, proudest accomplishments in life EVER (very few moms understand that- well not ones that do not have autistic children). We later had a setback when he developed severe constipation/leaky gut (megacolon) but after several different doctors, we finally got it fixed with Miralax (this took a few years). He will be 15 in September and goes to the bathroom on his own (sitting down all the time). I still tend to have him wear pull ups because his wiping needs a little work (but he gets/does most of it especially with verbal prompting). But he does not go number one or two in the pull-up at all- he stays dry. I was also worried about shaving him. My husband bought a hair trimmer and is using that on him and it is working very well. Just wanted to tell you what worked for me. It was messy and stressful but the result is priceless to me!!!! Read Less

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About Me
About Me

Hi, I'm Kate. I am the mother to a little boy with severe, nonverbal Autism. This is a glimpse into our heartwarming, sad, scary, funny, loving and secret world. Check out my video tab to hear me ramble about Autism.

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