Deciding to Be Brave

IMG_4676I 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.

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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.

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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.

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11 thoughts on “Deciding to Be Brave

  1. So glad that the surgery went well! I am sending prayers and hugs that the food and water issue gets better. My son won’t drink much water either but I sort of trick him into drinking the flavored water. I have had the same thoughts of life before “all of this” happened. You are human and those feelings are real. I admire you for your honesty.

  2. Thank goodness they were able to get Coop’s blockage taken care of. Poor kid…he is lucky to have you.

    I totally understand the need to “go home”…I have that feeling often (as in daily), despite the fact that my childhood was terribly unhappy. For me, “home” is this elusive, safe place that doesn’t physically exist, but the longing for it is real. I remember one of my old blog posts was titled, “I have no home,” and it addressed this idea that there is no stability or safe place to go anymore. One can struggle through this feeling and continue to move forward and go on, but there IS a sense of loss at the feeling of being homeless.

    Hang in there…you are not alone.

  3. I’m so very happy for you to have some medical help. Please know your not alone. So many kids with ASD are overlooked medically. Ironically most of them make huge progress once they physically feel better. My son took off once we treated his food allergies (dairy and gluten) and did other things to support his gut (probiotics, cleAner food.) praying the same over progress over Cooper!

  4. Yes, you are his voice. Loud and clear and please keep it going!
    My son was in incredible pain when he was little, starting from the age of 1 until his digestive system sorted itself out very gradually and although not completely OK, it is better now. There was no recognition. Non-verbal children express themselves using their behaviour. So, it was very easy to obtain antipsychotics, but not help and NO recognition whatsoever at all to find out what was really going on.
    A few months ago, my son was peeing blood. Initially it was assumed he had a UTI, but it came back clear….He had a kidney stone and it was huge! Most grown men are crawling over the ground in pain…but not my son. He is used to having pain. Thank goodness the stone was identified and removed. He healed fast. So, if anyone ever doubt that the “behavioural” issues are “autism only”, tell them this story. My son when little was in pain, and therefore he did not sleep and he did not eat and he screamed a lot.
    Another issue overlooked is the possibility of migraines and the not-so-obvious-seizures.
    All respect for those who do ABA only, but ABA does nothing apart from torture to a child who is in pain. Fix the pain…and you will see that a more gentle, flexible and individualized program (ABA type or whatever) is all that is needed to see happiness and progress increasing in your child.
    Hugs to all who fought (or are fighting this battle)!

  5. Wow, I am so sorry about Cooper needing surgery. Hopefully this will really help him though, I know it’s been a huge concern for you, and rightly so. You most certainly are brave!!

  6. I’ve been reading your blog for months now. My 2 year old was recently diagnosed and I can see my future in your blog, it’s scary yet comforting. If someone else can do it I can too right??? My son also has an awful diet that I constantly fret over. I found this nutritional drink for special needs kids called IQed (I know… One more suggestion from someone about something new to try) luckily for me he loves it, and it gives me a little peace of mind that at least one thing going down him is healthy! I hope things get better for you soon!

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