I had a friend ask me yesterday what made me decide to be brave. I love that question. I don’t feel brave. Ever. I feel afraid. And unheard. And lost. And completely unprepared and unequipped to handle what autism is throwing my way. But this sweet friend of mine saw it as bravery. And I loved her for it.
I was filling her in on the whirlwind of the last week.
I had my mini meltdown at Cooper’s pediatrician. I demanded that he helped me. I was a cross between a toddler stomping their feet and a super advocate spouting off about quality of life all while sweating like a pig and being hit in the face by Cooper. I got my point across.
Cooper’s pediatrician called me every day at home for 6 days straight. Boom. I think he was slightly worried about me. He even told me that the medical system failed us. He was right. It had. I’ve been saying that for years.
Whether it was my fault or a doctor’s fault or no ones fault…we all failed Cooper. Because of the nonverbal component his medical issues have continued for 5 years. I firmly believe that Cooper only knows pain. And his pain tolerance is very high. He doesn’t know what it’s like to not have a tummy ache. Or an earache.
How did I let this happen?How does a good mother let their child be in pain?
Obviously his autism masked some. And his inability to tell us that something was wrong masked everything.
BUT, the adults in this scenario failed a few ways too. I personally had too many battles to fight. I couldn’t take on the county, and the school district, and the medical stuff, and the potty training, and the diet, etc. I never got ahead of any of it. I was ALWAYS REACTING. I was never prepared. Nor did I feel equipped to prioritize it. I needed the help financially so I worked with the county. I need to services so I worked with the school. And it goes on.
I also felt like no one believed me. Or they believed me but they didn’t want to take up the fight with me. That was lonely.
And the doctors failed in the fact that they never saw past the difficult, challenging child. I also should have pushed more. Blah, blah, blah. The list goes on.
So, a week ago I had enough and the super mama bear advocate came out. Mostly out of desperation.
My specific concerns were Cooper’s constantly popping, bloody ear drums and his inability to poop. Cooper is five and he hasn’t had an unassisted poop in years. These two problems were completely changing this kids personality. When either one is happening he doesn’t sleep and he hits and he won’t try and he won’t play, etc. I describe it as a caged animal that feels attacked.
We decided to tackle the pooping issues first. The doctor sent me home with a plan that involved giving Cooper enemas until his tummy was cleared out and then meeting with a Gastro doctor. After one enema I knew there was a blockage.
Well….I’m no a doctor. And I have zero medical skills. But I am smart enough to know that a when something goes in and comes out clear….we have a blockage. We went in for an immediate X-Ray. And there it was. The exact thing I have been spouting about like a crazy lunatic for 5 damn years. Cooper’s stomach was messed up. The intestines were really large and full of poop and gas. And even more disturbing was what appeared to be a melon size blockage in the center of his stomach. And like that we were fast tracked to surgery.
The roller coaster was set in motion.
The surgery went really well. Blockage removed….or as the doctor described it….10% of the problem. He educated us extensively on how pooping is actually a really complicated process.
First, diet is huge. Cooper’s diet is atrocious. Like, really, really atrocious. He refuses 95% of foods.
Second, water is essential. Cooper drinks no water. Like, none. And there is no forcing him. He will dehydrate himself.
And lastly, the even bigger issue…..DRUM ROLL PLEASE….Cooper does not know how to poop. He does not stop moving or sit. And apparently pooping standing up is impossible. Also factored in were a few common diseases like Thyroid or Hershbrungs. The doctor tested for these during the surgery although he seemed positive the issues were diet, water and not knowing how to poop.
I received this education as Cooper woke up from the anesthesia. Now mind you, I was lying on his body as he kicked me and hit me and screamed in my ear. It was lovely.
The rest of the day went fine. Lots of pooping for Cooper and zero rest although he was very, very happy. Imagine the relief he felt from having the blockage removed.
That evening I started making mental manic lists and plans. Food, veggies, fruit, water. I know water is key. He won’t drink it. He refuses. The doctor said that we were giving him lethal constipation amounts of milk. He more so scolded me in a nice way. I didn’t feel attacked but I did feel like autism was not being factored into the discussion. I felt like my world was about to get harder and it was a really awful feeling.
Autism to me is a bunch of mountains and I have to decide which ones I want to climb. And it’s apparent that food and water are huge. Fix that and hopefully other things fall into place. Like sleep, rest, relaxation, pooping, etc.
That night I sat there and I had this really weird feeling of wanting to go home. You know that feeling I’m talking about? I was sitting in my new basement, watching a movie, in the dark, completely and utterly exhausted from the day, and I had this overwhelming feeling of wanting to go home. And wanting to see my mom. I guess it’s not all that weird since I had just moved a few days prior. Except, as I sat there and thought about it, the feeling of wanting to go home wasn’t a place. It was a time. I wanted to go back to before Cooper was born. I wanted to go back to Two Harbors when I was blissfully pregnant and life was simple. Back to when I thought you had babies and celebrated every single milestone…on time. Back before I knew that really sad, unfair things can happen to your child. And back before I became an advocate.
I felt like a fraud. What kind of mother thinks that? How did I appear as brave on the outside when I felt like I was fighting a losing battle?
Years ago I thought I was fighting the fight against autism and apraxia. I thought if I got Cooper into the right programs and therapies he would start talking and we would go on with our lives. But it morphed. Learning to talk went to the back burner.
Now, I am fighting this down and dirty battle for Cooper’s quality of life. When did that happen? Fighting for a new therapy or a better treatment is one thing. Fighting for your kid to feel better is another. This felt personal. And bigger than me.
So, when did I decide to be brave? It was the moment it became a quality of life issue. Living silently with chronic pain is not okay when there is help out there. Also, when I realized that Cooper was just accepting the fact that his body hurt. That’s not right. That’s when the advocate bubbled up.
I am his voice….brave or not.