Regression and a Confession

As with everyone, certain song lyrics get stuck in my head…and a certain couple have been playing over and over lately.

“…Is this as hard as it gets? ‘Cause I’m getting tired of pretending I’m tough…” Yes this is in fact from a Josie and the Pussycats song…don’t judge, the lead singer from Letters to Cleo sang it!

But back to the matter at hand…it’s apparently common knowledge that kids with autism “regress”. Some kids have an initial regression that leads to the diagnosis, but apparently all of them have regressions along their journey…an ebb and flow with the tide. It’s known, it’s expected, it’s hell.

We had our first real experience with regression this weekend. And to bring the good with the bad, I truly believe the only reason we saw the regression was because we were seeing such awesome forward progress. Our plan with therapies, diets, schedules, etc. deserves a post on its own, but suffice to say, we were moving in the right direction…and then he got sick.

A little cold, no big deal, but he got sick and grouchy by Tuesday, and on Wednesday I took him to the dr. In the room, he was just in my arms, hugging me, snuggling, his warm little body content to have the comfort of his mother. It was one of those moments that you hate because that means he’s really sick, but one of those moments that I know I’ll think about someday when he’s too big to sit in my lap…

Our pediatrician walks in and immediately says “Oh, he IS sick”…mostly because tornado Kellen is rarely in one place for long in the doctor’s office. We constantly sit there watching him tear up the room thinking “Why are we here again?”, but this time he was really sick. Turns out it was a double ear infection. It’s his first season without ear tubes, but also the first time we’d made it all the way to November (2 days in!) without an ear infection. One tube has fallen out, the other one is on its way out. I was really hoping to not have to redo his tubes, jury is out on that one, we’ll see.

We get to talking, and I mention the diet changes we’re undertaking, and to my surprise she was nothing but supportive. We actually had a great conversation where she said that science and medicine still don’t have a clue about autism. She said she knew that I would thoroughly research any potential treatment/therapy, so she was happy to help wherever she could. She also asked me a few questions so that she could be informed for her other families with autistic children. I was hesitant to initially tell her about the diet change, but her welcoming attitude let me know that we’d have another partner in our journey, whatever path we chose to pursue.

Anyway, it’s common knowledge in my kids’ records that Augmentin is the only antibiotic that has worked without fail (amoxicillin and omnicef have failed miserably in the past for both kids). My biggest concern was how to get him to take it…if I’d only known.

Patrick was gone most of the day on Satuday…and truth be told…so was my Kellen.

In his place was what I would consider a stereotypical poster child for autism. He was angry and agitated. He was kicking, hitting, screaming, crying. He wouldn’t ask for his cup, he constantly wanted to be someplace else (much of the fighting was over wanting to go downstairs). I felt like I needed a class in restraining…and when I’d finally get him to calm down, he still wasn’t there…he was in la-la land.

Sunday seemed to start out a little better, but then more of the same. Patrick was there, and he saw it, too. There was some sort of fundamental shift. As I stared in the bathroom mirror, I saw a tired and frazzled woman covered in the almond milk he had just slapped out of my hand and I was of course doing the ugly cry. I was trying to pull myself back together to walk out there, and all I could think was “We’ve lost him. He was there, he was happy, he was present, and we lost him. How?”

It was the worst parenting weekend of my life…I did not measure up to the challenge like I should have. I fell apart and Patrick was left to clean up the mess (literally and figuratively). It felt like a terrible nightmare, which for me would probably involve large bodies of water…and I was most definitely drowning.

We both implicated the antibiotics…it was the ONLY thing that had changed. I found myself Monday morning wondering if another friend, who was also dealing with a regression with her son, had an antibiotic connection…and she did. So I start researching and guess what…this was basically “to be expected”. I’m glad I did not know this ahead of time…because the regression was SO obvious and SO terrifying that I came to the antibiotic conclusion on my own, both as a mother and as a scientist. This is truth, this is a valid hypothesis in my sample size of ONE (and potentially TWO).

It’s no secret that antibiotics alter the bacterial communities throughout your body…much of the science behind autism is based on the fact that these communities are out of synch, out of proportion…too much of one, not enough of the other, shifts wreaking monumental havoc throughout the entire body. I plan to break all this down eventually…as an actual scientist not a Playboy playmate (although I really did like Jenny McCarthy on Singled Out).

We lost him…but he came back. He woke up happy on Monday morning, and I left him at school cautiously wondering if I should leave a note for his teachers saying “Warning…”. When I picked him up, they said that KK was back to himself…their comparison being “sick KK” last week as opposed to the “disaster KK” we saw this weekend. As my mouth dropped in awe at their report, I see my KK, my actual KK, running full speed across the playground, looking straight into my face, big toothy grin…and my KK is back in my arms, hugging me tightly. He was back, and I was overwhelmed.

He was fine all evening, asking for his cup, gesturing emphatically while going on about everything, laughing, playing, singing…he kept getting my hand and taking me places all evening…just to have me where he was. At one point, he took me to his room. We played for awhile and then he turned to leave, got to the door, looked back to see if I was following, then smiled and doubled back to grab my hand as if saying “Oh Mama, come on already…you don’t want to miss this”.

I held my breath again this morning, but my happy boy was here…I hope he comes home again today.

In all of this, I learned that I’m not as strong as I’m pretending to be (see “almond milk covered ugly cry” above). I need to learn to ask for help, this much Patrick managed to get through to me this weekend. Because keeping in line with the “confession” title of this post, I won’t even let him help half the time. I need to let go of some of the guilt, I need to learn to weather the bad days, and I need to have faith that there will be more good days. I have a lot to learn…

And so we move on…and to tie back to my lyrical stance today…only my dear Sarah McLachlan can say it so beautifully. This is what I was singing to Kellen in the doctor’s office when I held my sick sweet boy, and I realized that this is our song…

"Answer"

I will be the answer
At the end of the line
I will be there for you
While you take the time
In the burning of uncertainty
I will be your solid ground
I will hold the balance
If you can't look down

If it takes my whole life
I won't break, I won't bend
It will all be worth it
Worth it in the end
Cause I can only tell you what I know
That I need you in my life
When the stars have all gone out
You'll still be burning so bright

Cast me gently
Into morning
For the night has been unkind
Take me to a
Place so holy
That I can wash this from my mind
The memory of choosing not to fight

If it takes my whole life
I won't break, I won't bend
It will all be worth it
Worth it in the end
'Cause I can only tell you what I know
That I need you in my life
When the stars have all burned out
You'll still be burning so bright

Cast me gently
Into morning
For the night has been unkind