Here’s the Deal . . .

Here’s the deal. . . I probably hear that phrase about 100 times a day. It’s Elliott’s new favorite thing to say, and he has embraced it as such. I don’t know about you, but as a parent I find great humor and a pinch of discomfort when I recognize one of my odd habits or phrases emerging in my offspring.

Case in point – about a month ago, while outside watering Bob & Sally (Ada’s favorite flowers), she grabbed the hose and said “let me get this bad boy” – yeah, that was awkward. Perfectly appropriate use of the phrase, and while not necessarily typical Kindergartner speak, I recognized it as my own. Great, my 6-year-old is an observational learner – something we’ve worked so hard on for so long – and she’s dealt the hand of a Mother who is a bit unfiltered.

I remember several years ago driving with my friend Elliott who had just recently learned to talk. Yeah, autism had given me a few liberties in terms of not thinking about or worrying about my language on the same timeframe as other parents. It’s not like I walked around spewing the f-bomb in front of my children, but I certainly didn’t think about saying “crap” or something as Elliott only had 6-7 words until he was nearly 4 (one of which was clock without the “L” but that’s another story) and he was not in a place where he was paying attention to what I said. A car cut in front of us, and I reacted without even thinking about it – soon enough, a sweet little voice, a voice I had only recently heard for the first time after years of wondering whether he would ever speak said “Mom, why you say Jesus Christ like that”?

Yep – filter. I need to work on my filter.

Conversation skills are difficult for many people with autism. Elliott struggles with back and forth chat a great deal. Ada has made great strides of late with conversations, and if you want to know the latest gossip about what’s going down at morning Kindergarten she’s got the lowdown. Heck, I can tell you whose clip is moving up for good deeds, who has been sent to the Principal, and whose clip got moved down for shaking their butt in an unsafe way (this person’s name begins and ends with an A but that’s all I’ll say). Henry, our only child without an autism diagnosis is not always a terrific conversationalist either, though I’m guessing it’s not necessarily odd for 4th grade boys to begin each phrase with the word “dude” or respond to my questions with a standard answer of “blah, blah, blah”.

For Elliott, his difficulties with back and forth chat are far reaching. Some days, from the moment he brings me my coffee in the morning (not a bad gig, right?) to the moment he turns on his heart night-light, he is constantly talking. His leisure skills are lacking, and while we work hard on these skills each day, it’s never been easy for him.

Because I’m kind of his person, meaning, I’m around him a great deal, and he feels a connection and sense of security with me, I sometimes (ok, let’s get real – almost every day) feel completely overwhelmed by his constant talk, repetitive questions, topic-jumping, and need for constant attention. Sometimes, when I’m just feeling at the end of my rope, and will occasionally share my frustration, people will say “oh, but he’s so sweet and funny” – and yes, he can be. But, there is a difference in dealing with the intensity of Elliott for 10-15 minutes, versus 14 hours a day, 7-days-a-week.

Enter Prozac, Mom’s Cocktail Night Out, and my red couch . . .

That said, even when I am overwhelmed, I have a sense of gratefulness. Not everyone with autism learns how to speak, and Elliott did. I don’t take that for granted, (and for the record, he now pronounces clock with the “L”), thankfully. But I also never stop wanting more for him, and believing that with a lot of hard work, a great deal of patience, and more than a few mistakes along the way, he can continue gaining these skills little by little. One foot in front of the other. It’s a marathon – not a sprint – blah, blah, blah (wow, now I’m stealing Henry’s lines – awesome!)

Just for the heck of it – let me give you an example of one ten-minute period last week and the types of topics the E man can cover. I had a notebook with me and decided to record his questions with a timer just to see for myself. Here goes:

“Why is it expensive for dogs to fly on airplanes”?

“How come other people put their house number on garage sale signs”?

Why were you going to name me Lily if I was a girl – here’s the deal, didn’t you know I liked Ali better”?

“Mom – do you know I like shopping with you because here’s the deal, I’m an extreme couponer”?

“Do people die for other reasons than getting old”?

“Here’s the deal, I want you to buy French Onion Sun Chips and not Harvest Cheddar”.

This was 10 minutes. I’m still back on the cost of flying dogs, and he’s moved on to something light like death. Yikes! Now, multiply this times 24/7, and maybe you can relate to my enjoyment of the occasional margarita.

But then, something happened yesterday that I’m still celebrating. As we were chatting after school about what he was learning in math, and he abruptly segued to his feelings of love for our neighbor, Alicia, I said “whoa, I can’t keep up with you buddy, you’re topic jumping”. I’ve likely said this phrase a hundred times a day for the past 8 years (since he started speaking), and it’s never really connected for him. But yesterday, he looked at me, turned his head quizzically to the side, and said “now I’m going to change the subject” and again launched into his feelings of love for Alicia, and her lack of reciprocal affection for him.

A short time later, as he was discussing the differences between sockeye salmon and Atlantic salmon, he stopped, looked at me, and said “time for a topic change” and launched into chat about how unfair it is that other families don’t have exercise on their daily schedules after school. I was about as proud as any parent could be. You know what I mean, the pride you feel when your little person says “Mommy” or “Daddy” for the first time, or you watch them take off down the sidewalk without their training wheels. That kind of pride.

Because this has taken 8 years, and some days it feels really, really hard, and often it seems like our progress has just come to an ugly halt. Sure, it’s kind of weird to say “time for a topic change” every time you want to change the subject, but this has been 8 years in coming, and it’s a giant step in the right direction. Here’s the deal, I’m proud of this kid. Heck, I may even shake my butt in an unsafe way in celebration because my filter is a little off, and I own that.

Never give up – one foot in front of the other, marathon not a sprint, blah, blah, blah . . .

Exhaling on the Red Couch

Friends – the red couch needs a bit of dusting off.  Yesterday, as I gathered the trio and sent them off to their various schools and classrooms, and my last Kindergartner took her teachers’ hand looked back at me and said “you need to go now”, I came home and plopped down on the red couch for a moment and just exhaled.  Wow, I’m filled with a mix of emotions – not unlike most parents this time of year I’m guessing. 

We’ve had our ups and downs this summer – moments of greatness, and moments that leave me feeling anxious about what the future holds. 

This summer was the first where Elliott had no therapy – and knowing that, I tried to plan for him to have enough activity going on that he could get away, and yet not be overbooked.  We started out strong, especially considering that spring had been a particularly challenging time for him at school, and while we love his school and the tremendous team of educators who work there, Tom & I were very worried that public school just may not be the place for E.  His academic gains last year were minimal at best, and he struggled a great deal adapting to a school setting that was huge by comparison to what he was used to (home and then a small 2-room setting).  He didn’t “connect” with any students (though he can tell you every single faculty and administrative staff member and most of their birthdays), and when we attended a family game night, we overheard students making fun of him.  It left us feeling as if even with all the tools we’ve tried to give him, that he was just not yet equipped to make it work. 

By late spring, in the midst of his most serious challenges and a series of medication changes, he got angry one morning and hit me.  It wasn’t hard enough to hurt me physically, but having lived through the hell that we did in Elliott’s earliest days of autism, it was enough to scare the crap out of me and send me into a deep depression.  I can look back now and recognize I was in a place no parent of autism ever wants to be – the “what if” zone.  What if everything we’ve tried to do to help him wasn’t enough?  What if we made some wrong choices, and they have affected his future?  What if we never discover a way to teach him reading comprehension beyond a 1st grade level?  What if he’s not going to be ok?  Thankfully, the hitting was a one-time incident, and likely attributed more to medication changes than anything else.  (He’s now off stimulants, and while struggling with distraction, is a much less anxious dude).  But throughout the spring and early summer, I struggled with the “what if” syndrome more than I’m comfortable admitting to. 

In the midst of all of that, we were trying to decide on Ada’s Kindergarten placement – should we send her to our home school with Henry, or to Elliott’s school where they have an ASD program?  Should she be placed in the ASD room, or was the regular ed. setting a better fit?  How would our decision affect Henry & Elliott and Ada’s home-based therapy program?  What if spending all summer with Elliott would cause regression for Ada?  Tough choices to make.

And so, as summer started, I was in many ways just going through the motions – getting everyone where they needed to be, feeding them (no easy task with the boys now eating like a football team), and doing it all again the next day.   I felt sad, tired, overwhelmed & a bit lost.  Thankfully, the trio was as jazzed about summer as ever, and as June began, their enthusiasm began wearing off on me.  Despite the questions and challenges we faced as parents, the kids & I had moments of genuine fun and “connection” that have never been possible in the past.  Small dorky things like art projects, slip ‘n slide time or really connecting with their cousins and having genuine fun (& fighting) together. 

And then, something wonderful happened – her name was Ms. S.  Thanks to a referral from an awesome educator at E’s school, he began working with a tutor that has helped him in ways we could not have imagined.  Her specialty is reading recovery, and when we met, and I tried to explain the myriad of challenges he experiences with reading comprehension, I thought for sure we would scare her off.  Then, when Elliott & Ms. S. met for the first time, and I heard him tell her he “hates” reading, I thought with certainty she would tell us to get lost (let’s get real – it was her summer vacation too, and we’re no picnic) – but she didn’t. 

Even as I thought – from my dark place at the time – that this would likely be one more failed attempt at helping him grasp comprehension concepts, there were glimpses of hope.  Things like he liked going to see her, and would get excited on days he had tutoring sessions.  He began asking to go to the library (I think I fell over the first time he asked), and didn’t have a meltdown when she sent home reading and writing assignments. By August, when she got him “hooked” on the Mercy Watson series of books, and all 3 kids & I would be huddled together and take turns reading about this crazy hot-buttered-toast-eating-pig – everyone laughing, enjoying and (get this) understanding the story, I realized something crazy awesome had happened.  In that brief, miraculous “everything is right with the world” moment, I knew what we were experiencing was far more amazing than any standardized test could ever capture.  It was pure awesomeness.  (Ok – truth is they started fighting 5 minutes later, but you likely already guessed that, right?) 

And so, as I take a few deep breaths, and fluff the pillows on the red couch, I have to smile.  I own that I’m a worrier and sometimes have difficulty enjoying the moment & I need my kids to remind me how.  I own that even as autism has been a part of my parenting journey for nine years now, I still have days that are as fresh & raw as in the beginning & I hate that.  I own that I’m embarrassed that I lost hope last spring, and that it took a toast eating pig for me to realize it.  And I own that I have no idea if Ada will be successful in her mainstream classroom Kindergarten this year, if Henry will struggle as much in 4th grade as he did in 3rd, or if Elliott will make a friend.  I own all of this because my kids reminded me this summer what hope looks like, and even though we will face any number of challenges this year, we can always throw a bad 80’s music dance party and move on.  One foot in front of the other. 

Today, as I dropped Elliott & Ada off at their school, I watched my 5th grader take his little sister’s hand, and walk proudly into their school. They were both filled with such purpose and hope that it made me smile.  I’m grateful to have such inspiring teachers . . .