Hair salons have long been something we’ve avoided like the plague. In years past, Ben’s had some truly awful experiences at them, as (when he was much younger) the sound and sensation of hair clippers buzzing over his head would overstimulate him and drive him nuts, and attempts as he got older typically ended in me dragging a screaming kid out because all he wanted to do was flush the toilets. It was all just too much for him, and even the salons advertising as “child focused” were just too full of activity and over-stimulation for the poor kid.

So for the past year or two, Ben’s had his hair cut at home, with clippers in the bathroom. It’s done the job, but as you can imagine, you get what you pay for – it’s really been more “shearing” than stylish “hair cutting.” I decided it was time to try venturing out again to get him a proper hair cut, so I hit Yelp to search out nearby barbershops (assuming they’d be faster, a bit more low-key, and would be able to buzz him with clippers rather than try to get fancy with a comb & scissors.)

I quickly found Cecil’s Barbershop and the reviews on Yelp looked positive, so I called at 9am on Saturday and asked if I could bring my two boys in for a cut at 10:00am. Appointment set, I let Ben know where we were going and right away he started obsessing on whether or not he’d be able to go to the bathroom there. He got pretty anxious for 5-10 minutes, which started to make me very nervous and wonder if I’d made the wrong decision to try this. I sat down and wrote out a social story for him (which is simply a series of simple lines about what we were going to do – i.e. “I am going to the barbershop. I will get my hair cut first. After my hair cut, I can use the bathroom 1 time. I will listen and not yell or cry.”)

We got to Cecil’s just before 10am – turns out it’s a converted house in Citrus Heights, which made me feel much more comfortable, as it’s far more low-key than a salon, and infinitely less chaotic than a child-focused hair place. Cecil (the proprietor) said his son Evan could take Ben right away, so Ben went in, sat down, and Evan got ready to go to work. First thing Ben told him was “no scissors” (not sure why – scared of being hurt? cut? – but Evan said, “No problem – clippers only.”) I told Evan that Ben was on the Autism spectrum (figuring I should be proactive in case of things going bad), and without even batting an eye, Evan replied, “No problem – I have the quietest clippers in the world.” That instantly set my mind at ease, as you never really know how someone is going to handle the mention of ASD, especially at a low-key barbershop that probably doesn’t see too many kids on the spectrum walk through their doors.

The haircut went so well – Ben was calm, quiet and even a bit chatty with Evan. I was so incredibly proud – all of my initial fears and anxiety disappeared, Ben did great and ended up with a really sharp looking ‘do. Cecil’s Barbershop will now be part of our regular rotation and I’ll be bringing the boys there monthly going forward.

Here’s to my boy Ben – so, so proud.

Addendum: in all my excitement, I forgot to mention that the bathroom was NOT a problem @ Cecil’s for Benjo — I think the fact that it was set up like a house (with a “regular” bathroom) and that there wasn’t the usual hustle & bustle we find at most public places (stores, restaurants, larger hair salons) helped to set his overactive mind at ease. He went to the bathroom one time after his hair cut and then sat and waited patiently while his brother got his hair cut. Pretty amazing, and yet another reason why we’ll be back to Cecil’s for haircuts going forward.

Tonight was an exceptionally great night with Bennie… With he & his brother having been at his mom’s since Friday, I was very excited to go pick them up after work and bring them back to my house. As is the norm, Ben was a bit angsty when I picked him up (transitioning is not so easy for him, plus I like to think the emotional excitement of seeing me and coming back to my place is a bit overwhelming for his senses) so he’s usually a bit loud on the drive back.

Once we got back to my house and the boys gave my fiance their big hugs and settled in for dinner, I was captivated by Bennie… He’s always a great eater, and loved the tasty GFCFSF beef veggie stew we made for the boys in the slow cooker, but the usual hyperactivity or giddiness that typically accompanies mealtime wasn’t present tonight. He wolfed his food down (per usual), but was quiet and happy while doing so. When he received his usual prompts to “eat slowly” (geez that kid can eat), he didn’t bark back as he normally does, but listened… and ate slower. He was also tickled pink to get to drink some new chocolate almond milk (2 glasses worth!)

Once dinner was done, I was so excited to surprise him with the special treat I had found for him: hemp vanilla ice cream! I’d tried every variety of non-milk ice cream I could find – rice, soy, tofu, coconut – but each would cause either physical reactions in him (rashes) or lead to emotional outbursts. I’d read about “Tempt,” a hemp-based ice cream, and knew that he had seemed to enjoy hemp milk in the past, but hadn’t been able to find this product at any of my usual shopping haunts. However, I was recently able to pick some up at Whole Foods and I was very excited to get to let Bennie try yet another type of his favorite snack food. (You wouldn’t believe how rough it is to not be able to let your kid eat ice cream – every kid should get to enjoy that simple pleasure…)

His eyes lit up, he raced over to the table with his bowl with eager anticipation, and he devoured it. Then the attentive wait began… Rash? Hyper? Screaming? I am so overjoyed to say that none of those typical symptoms appeared – the Holy Grail of GFCFSF had been found!!

Even better (icing on the proverbial cake): we also noticed that he was more communicative tonight than usual, asking questions and putting longer sentences together. For example, when I showed him the ice cream, he asked me where I got it from. Read that again: he asked me where I got it from. Could this be the (positive) effects of Respen-A (which he’s been on for 10 days now?) I hesitate to get too excited or read too much into it just yet, but it was a very positive observation nonetheless.

We then took the boys to play in the playroom, with Bennie and I playing “Headbands,” a fun thinking game I got him for Christmas in which the players put a plastic headband on their head and place a picture card in it (without looking at the image) and then ask for and respond to clues from the other players. It’s been fascinating to watch Ben’s mind work as we feed him clues and help him guess “who am I?” and then how he tries to do the same for other players. He was on fire tonight, banging out correct answers to his cards, but my proudest moment came when he wasn’t sure what card he had on his head, but had the presence of mind to lean back and look at his reflection in the glass cabinet door beside him. That amazing little bugger cheated! I cannot express how proud I was in that moment – he had the realization that he could see what the card was and then use that (cheating) edge to correctly say what card he had in his headband. I wish someone could have taken a picture of my face at that very moment – it was a mix of excitement, glee, pride and sheer exuberance.

We then went and tackled his homework – 1 sheet of simple math addition problems and 1 sheet of reading comprehension. He nailed both – more calm and focused than I think I’ve ever seen him while doing homework (no frustration or anxiety whatsoever.) I swear he was more thoughtful and engaged than usual, especially with the reading comprehension, which is never easy for him, as he can read pretty much anything, but doesn’t usually retain the knowledge of what he read… but tonight seemed different. Tonight he was able to correctly understand and assign different names under the categories of “people, pets or places.” I was proud, and amazed.

Finally, we finished the night by bouncing a plastic ball of the wall back and forth, with him knocking it out of the air and/or kicking it (usually straight at my head), and one time he even motioned for me to cover up and protect my face before he kicked the ball at about 100 miles an hour at me. Again: another indicator of Respen-A helping his brain be more cognitive? Perhaps, but another exciting observation either way.

What a fantastic, amazing evening on all levels. A happy, beautiful kid got to enjoy some tasty kid treats (chocolate milk & ice cream!), had fun (and cheated!) at a game, hit a homerun with homework, and did not display any of the too-typical outbursts of emotion we typically have to tip-toe around in an effort to avoid.

Tonight was great, truly great. Here’s to working towards a repeat tomorrow, and the day after that, and the day after that. I’m not so deluded to expect that this will be the norm every night, but tonight proved that his anxiety and irritability are not constants, but rather seem to be reactions… So continued attentiveness to both his diet and our interactions with him can only help to make tonight more the norm.

And that is ridiculously exciting.

My darling boy,

Words could never express just how much you mean to me. I still remember the excitement I felt when you were soon to arrive into this world, and the sheer joy and elation that accompanied your delivery into my arms. To look down at this amazing, wondrous, remarkable little child and know (but at the time not be able to fully appreciate) that my life had forever changed was a realization that humbled me on that special day nearly 8 years ago… and continues to resonate with me today.

I know how tough things can be for you sometimes. I know your days are far harder than anyone – your daddy included – could ever imagine having to deal with. I know your schedule is terrifyingly full of school, special programs, therapies, routine, (forced) order, medications, schedules, rules, can’t-have’s and constant “you need to do this.” Any “typical” child would struggle under the sheer weight of all you’re forced to endure, so the fact that you have to handle all that you do with your special challenges is even more difficult… and makes me empathize with, and love and respect and admire, you even more.

Do you have any idea how special you are? Do you know just how amazing you are? You have the warmest, most loving and trusting soul of anyone I have ever met. Even with all that you have to deal with, you are always so quick to smile, so quick to hug, so quick to trust, so quick to love. No one I know emanates as much radiant warmth as you do, and I wish I could have even a tiny portion of the joie de vivre that you have.

I know things aren’t always easy. I know there are days when all you can do is yell, or cry, or lash out and try to quell the tempest in your head. Please know that I will always do whatever I can to help you do so. I know I’m not always as patient as I should be, but I’m working so hard on that. I know all too well that there are times when we all just need to let it out and have someone there to take us in with a warm, loving hug and reassure us that “it’s all going be alright…”

… and Bennie: it’s all going to be alright. I’m here for you, now more than ever, and I am going to do anything and everything I can to help you smile. You are beautiful, you are amazing, you are loved, and I am going to make sure you know that each and every day.

I happened across this amazing blog by an amazing woman, and her nearly 2 year old-post (perfectly) entitled “Welcome to the Club,” written for parents of kids diagnosed on the Autism spectrum.

This post is incredible, heartfelt, sincere and empowering. I am floored by the sheer power of her words and how perfectly she captures the emotional whirlwind that comes along with an ASD diagnosis.

Here’s how she ends her blog post, and brings tears to my eyes in the process:

You will help your sweet girl be far better than OK. You will show her boundless love. She will know that she is accepted and cherished and celebrated for every last morsel of who she is. She will know that her Mama’s there at every turn. She will believe in herself as you believe in her. She will astound you. Over and over and over again. She will teach you far more than you teach her. She will fly.

An amazing read – be sure to check it out.

I was very excited tonight, as I finally had an early (6:45pm) hockey game, which meant my boys could finally come out and watch their daddy skate around like Gretzky (at least in their eyes – thankfully they’re too young to know just how off that comparison is.) They were very excited to get to come, but my spidey sense tingled when the first thing Ben asked – and really, the only thing he asked – was if he could go to the bathroom.

See, Ben used to have a real fixation with bathrooms – more specifically, with flushing toilets. Something about the rushing water used to fixate him to the point where going anywhere in public was a (futile) exercise in patience and typically ended up with dragging a screaming kid out of a store (much to the disapproving looks of passer-bys, who didn’t know just what they were witnessing.) Over the course of the past year or so, and thanks to Ben’s (many) therapies and (admittedly) the positive effects of the medication he was/is taking (Risperidone), he’d been able to get that fixation in check, to the point where he may still want to flush the toilet at new places, but he’d be good with a single (okay, double) flush and then we could carry on with our business.

Tonight was a painful reminder of the severity of Ben’s recent setbacks, as the poor kid just couldn’t help himself. Before I’d even gone to get suited up for the game, he’d insisted on going to the bathroom several times (to which I acquiesced, doing whatever I could to try and deliver a fun and positive night for the boys.) Plus, my fiance was with the boys solo at the game (with no one there to help or to at least be able to focus on Ben’s little brother so she could attend to Ben) and I really didn’t want to leave her to have to handle Ben’s fixation by herself.

From the bench during the game, I kept looking at the stands, and more often than not, the 3 of them weren’t anywhere to be found… and sadly, I knew what that meant. Turns out Ben sat very still (with his headphones on and music playing to help drown out the loud sounds of the game and the buzzer which overwhelmed his senses), but once the first period was over, he (logically) assumed the game was over and it was bathroom time again. Which then continued through the next 2 periods.

He was happy – he wasn’t throwing a fit, he wasn’t making a scene – but it was clear that the poor kid just couldn’t help himself. He was fixated on that damn bathroom and just couldn’t shake it’s pull on him. Add to that the pointed stares from others in the stands (who apparently couldn’t fathom why my fiance wouldn’t let the poor kid go to the bathroom) and the commentary from (hopefully) well-intentioned strangers in the bathroom who insisted that he wasn’t done and still had to go when she was trying to call him out of the men’s room… Suffice it to say it was a difficult night.

It was a quiet ride back to drop the boys off at their mom’s house, and more than once I broke down in tears after I got home, as tonight just further demonstrated how much Ben has regressed (how I loathe admitting that) and the challenges he’s facing.

The positive is that it wasn’t as bad as it could’ve been – or has been in the past – and other than his uncontrollable fixation, it was (I suppose) an overall positive public outing. But my poor Bennie – how I wish I could reach inside your head and just flip off the switch that controls your obsession with toilets so you could look up and around at the amazing world you live in and not lose yourself to your fixation.

We’ll work on this, together, my beautiful boy. Daddy’s here, always.