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Oral Microbiota and Autism

Best of: Break My Stride

StrideNote: Cathy has the weekend off. She wrote this post this time of year in 2014. 

By Cathy Jameson

All I wanted to do on Thursday was vacuum.  At 10pm, as I made my way to bed, I glanced over at the vacuum and shook my head.  There is was.  Sitting in the same spot.  Untouched.  All day.  I hung my head and thought, Geez. Why can’t I get anything done around here?  Trudging the rest of the way to my bedroom, I added ‘VACUUM THE HOUSE’ to my list of things to do Friday. 

When I write my To Do lists, they tend to be a mile long.  I give myself an entire week to accomplish the tasks though.  Returning phone calls, scheduling appointments, sorting through paperwork and getting to the housework can’t be done in one day around here anyway.  With Ronan’s school and therapy schedule, and with juggling my other kids’ schedules, I’m on the go and out of the house more often than not.  Giving myself the entire week to check things off the list is more doable.  I can plan better and can usually get everything done.  This week, knowing we’d be hunkered down all day Thursday because of a winter storm, I looked forward to being home all day and to crossing things off my list.  That included vacuuming. 

But it didn’t happen.  And I was hard on myself for not getting it done. 

Dust bunnies and crumb bits under the table reminded me that my floors were screaming to be cleaned.  I was upset at myself for letting something so trivial bring me down.  But it was the one thing I wanted to do.  Instead of being able to look at the day as a success and remembering what I had gotten done, I only saw what I didn’t do. 

Midway through beating myself up about not getting this chore done, I stopped and laughed.  I had made a phone call earlier in the day (which was on my list of things to do) to my parents.  The topic:  me focusing on and worrying about what Ronan can’t do; not on what he can. 

More often than not, when I see what Ronan isn’t doing, I stumble and fall landing in a heap of tears as I go down.  That happened around the same time I could have been vacuuming on Thursday but didn’t.  It happened when I distracted myself choosing to read a story about a boy who’d recovered from autism.  It happened when I also beat myself up for not being able to provide Ronan with what this other family can provide:  an independent future. 

That family made it through the finish line.  They brought their kid back.  They did what others strongly feel is impossible.  They figured out what I’m still struggling to understand.  They did what I’m still waiting to do.  They reversed a lifetime of difficulties while I feel like I’m scratching and clawing my way out of an unlit tunnel heading nowhere. 

As thrilled as I was for this family, that recovery story did a number on me.  My excitement quickly turned to depression.  Not only that, I was instantly jealous.  Why them?  Why their child?  Why not mine?  Will Ronan ever get his chance to be whole again?

On that call with my parents, I compared Ronan to this teenage boy.  He’s got his life ahead of him and can live it independently without traces of what used to cripple his development.  I talked.  My parents listened.  I thought talking about it might help, but it didn’t help pull me out of my funk.  It pushed me further into the darkened hole I had mentally started to dig for myself.  I could only think of negative aspects of Ronan’s diagnosis.  I could only focus on how difficult life is for Ronan now and how it might continue to be in his future. 

Everything that Ronan can’t do flooded my thoughts and my side of the conversation.  Ronan can’t talk.  He can’t go to the bathroom on his own.  He can’t be left alone.  With the pace we’re going now, he’s going to be living with us and be fully dependent on us for the rest of our lives.  This is not how I had hoped our life or his would be. 

My parents let me talk as I shared my concerns and sadness.  Then it was my turn to listen.  They too have concerns but were able to calm me down to hear their perspective.  I had to get off the phone to make sure Ronan wasn’t getting into anything but promised to think about the sage advice they were able to give me before we hung up. 

Unable to fully shake the depressing thoughts, I putzed around the house a little bit.  People think I’m one of the strongest moms out there.  A day like Thursday proves the opposite.  I’m just as fragile and emotional as the next mom.  Having no time to be tripped up by my sadness, I went into the kitchen and made a snack.  Thinking I might finally attack some household chores, I was interrupted by Ronan.

Ronan came into the kitchen and asked for a hug.  Ronan loves hugs.  But he loves them on his own terms.  When he wants them.  And not all the time when I offer them.  I hugged him and he hugged me back.  The housework would wait.

CJ I hope meme
When he was done with his hug, Ronan sat down at the dining room table next to his voice output device.  I grabbed some activities from a basket we keep close to the table and sat down with Ronan.  The basket has some math and spelling games, some manipulatives for counting and a few LEGOs pieces we all hope Ronan will play with appropriately.  Interested in what I’d placed on the table, I created some turn-taking opportunities, a skill he struggles with and one we’re always working on. 

Back and forth, we played.  Every few turns Ronan requested something different on his output device.  I didn’t fulfill each request, which can quickly escalate into a meltdown, but Ronan remained calm.  He tried again.  He initiated contact, both eye and physical contact.  Reaching gently for my hand, he guided my finger to the keyboard.  He signed what he wanted, and we spelled words together.  Back and forth, word after word, creating sentences and listening to his thoughts, it was the most time Ronan had spent with me all week.  I stayed with Ronan as long as I could easing away only because I had to get dinner ready.  Ronan remained content at the table with the items I’d brought him until it was time to eat. 

We ate as a family and began to clean up from the day.  After dinner, the rest of the evening was spent in front of the fireplace.  Having a few minutes before starting the bedtime routine, some of us played UNO while others chose to read.  Ronan listened to his favorite School House Rock songs on Youtube and laughed at the parts he especially enjoys.  Completely forgetting about how frustrated I was after reading the recovery story earlier in the day, I was feeling grateful.  My family was safe, warm and happy. 

Once the kids were tucked in, I had some quiet time to watch a show with my husband.  It was a good ending to a long, snow-filled day.  Until I headed to bed.  Until I saw that vacuum. 

Until I remembered I didn’t do what I wanted to do. 

Until I compared that failed chore with my failed attempts to recover Ronan.

Until I thought, how much longer, how much more, and will he ever.

That hole I’d stopped digging earlier was opening up again.  Not now, I thought.  Please. I put those emotions to rest already. 

I changed into pajamas and got under the covers.  I wanted to sleep, not over-think or over-analyze Ronan this late at night.  It would do me no good.  I forced myself to push out the negativity.  I asked myself, Come on, Cat.  What can Ronan do?  Try to remember what he did do today instead of what he didn’t.  Think of one thing, just one thing that he did today that maybe he didn’t do so well yesterday.  Even if it’s a small something, can you at least remember one positive something, right?

Putting my emotions in check, I of course could think of a few things.  I could actually think of a lot of things:

- Ronan ate his meals while sitting down.  He did that instead of taking a bite and wandering away from the table like he usually does.

- Ronan played with me, not because I wanted him to, but because he was ready to.

- Ronan successfully completed therapy homework.  He did it with determination and without fussing or whining. 

- Ronan transferred beads from one hand to the other consistently, a skill I’ve been waiting a long time to see him accomplish.

- Ronan typed a full sentence on his new output device.  He typed a new word too.

- When he normally prefers not to be touched, Ronan raised his arms up and reached for me because he needed my comfort. 

What a list!  What a joy it was to remember each positive moment of my day and his instead of dwelling on a list full of cannots and will nots.  I went to bed happier and quite proud of Ronan. 

As much as I loathe the expression, “It’s a marathon, not a sprint,” in my heart, I know it’s true.  It’s true for a lot of things, not just recovery.  Plus, no one I know has recovered their child overnight.  No one has found a magic bullet that makes it all better.  Recovery, like many of our daily tasks and responsibilities, takes time, patience and perseverance.  It’s done while everyday activities like housework and vacuuming, work commitments and unexpected activities pull us in different directions. 

I went to bed laughing at myself instead of bringing myself down.  I remembered that yes, Ronan can, and yes, Ronan will.  It may always be at his pace, but it’s at a pace where I do see forward movement.  We may not have walked as far on this path as others have, but when I stop, think, reflect and refocus, I see that we are at least on a path.  We’ll continue walking down it stopping only for guidance and support from others along the way. 

Cathy Jameson is a Contributing Editor for Age of Autism.

 

Comments

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Gayle

Cathy-I love to read your stories of life with a son with autism as I identify with all the emotions you mention when hearing that some lucky mom's son has recovered. I feel the same frustration, anger, jealousy, regret, sadness and depression that you describe. I personally do not know anyone who has recovered their child from autism despite spending a lot of money and time on wasted meds and therapies. We need RESEARCH from the NIH, CDC, major drug companies, and smaller pharmaceutical companies to devote the necessary time and money to find a cure for our children NOW-not the distant future. I believe the smart researchers are out there and if we pray hard enough someone will find the CURE we all so desperately need for our children. God Bless you and you beautiful family. I am living the same life as you are as my son is now an adult and half our lives have been spent caring for him and we will never give up on him!

Cathy Jameson

A "Ta-da!" list. Pam, that's BRILLIANT! I'm going to switch to that kind of list starting today. Thank you!

Aimee Doyle

Cathy - this was so moving. I enjoy your weekly stories. You are so right to celebrate the accomplishments that Ronan has made - accomplishments that he would likely not have made without the support and dedication of you and your family.

I also understand your frustration about recovery. My son is 28 and we've spent a quarter-century in the autism trenches. We've tried every therapy out there and spent hundreds of thousands of dollars, almost all of which was out of pocket. I'm grateful we've been able to try so many things - and I'm grateful for his progress, although he will need lifetime care and support. I've seen some parents do even more, with less progress for their kids; some parents have done less, with more progress. So baffling.

I wish that someone would study recovery (dare I say cure?) in children with autism. I wonder what the actual recovery rate is? From what I've read I'm thinking way less than 10%? I'm wishing someone would study those kids that recover - and figure out how/why they recovered. Were they less damaged to begin with? Maybe, maybe not. Why don't more kids recover?

I also wish that someone would study autism in adolescents and adults - figure out exactly what's going on in their brains and bodies - and research effective treatments and therapies. These might be different from those used with children. But no one is doing this. Once a kid is past puberty, it seems that hope dries up. I haven't seen a new, effective, treatment/therapy in 15+ years.

Where to go from here? Hard to see the path, although like you, I try to focus on sunlight along the way.

Pam Byrne

What a beautiful essay! A few years ago, I decided instead of making to-do lists that frustrated me because I hadn't gotten everything accomplished, like you, I made a "Ta-da!" list of things that did get done and were worthy of celebration. As always, I find your writing inspires me and, I'm sure, other autism moms, as well.

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