I’m still active… (just on Facebook)

Misc

February 28, 2013

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In the off chance that anyone is visiting this blog, I wanted to (first) apologize for the lack of posts over the past year but (second) let you know that I am still very active… just over on the Walk With Ben Facebook page (click here to view).

Admittedly I’ve been doing less of the personal sharing about Ben and our journey together and more sharing of things I stumble across on the web & Facebook, but hopefully still relevant, interesting and helpful for everyone out there. That’s not to say I’m abandoning posting to the blog – not at all – but am just taking a break. An extended break.

So come on over to Facebook and connect with me/us there!

https://www.facebook.com/WalkWithBen

Some perspective…

Personal

May 11, 2012

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An epiphany I’ve had recently has knocked me back on my heels somewhat and brought new perspective to how I perceive Ben and the complex, amazing boy he is (as well as providing additional insight into the “how” and “why” he is the way he is):

Symptoms of Autism/Asperger’s/OCD/ADHD

  1. “Checker” – i.e. needing to check to ensure doors are locked, windows are closed, lights are off, faucets are off, etc.
  2. “Organizer” – i.e. everything has it’s place, must be organized and laid out in an orderly fashion (even items on a restaurant table)
  3. Focus on “even” numbers – i.e. volume knob must always ben on an even number (never an odd), sprinkler system duration has to be even number, etc.
  4. “Creature of habit” – prefer to take same routes every time, whether driving, walking, etc.
  5. Punctuality – never late, always planning way ahead, increasing anxiety as specific time approaches (travel, getting to work, social engagements, etc.)
  6. Inability to relax until everything is as it should be – i.e. once food has been ordered at a restaurant
  7. Mental checklists – constantly making, revising, checking off lists of to-do items throughout the day (and unable to fully relax and unwind until they’re all done)
  8. “Hoarder/collector” – strong compulsion to buy/purchase/own/collect extreme amounts of items of interests (comic books to sport cards to CDs to DVDs to books)
  9. Sensory issues – strong aversion to hot liquids (soup, coffee, tea, etc.)
  10. Very difficult time in social situations – idle chit-chat or meeting new people very challenging and stressful
  11. Inability to focus on one thing for an extended period of time
  12. Often detached and unemotional inside one’s head when the opposite should be true given the situation

All of the above are not characteristics of Ben – they’re my own. Quirks that I’ve never seen as a whole before, but now beg the question: who’s the Autistic one?

A letter to my son

Personal

January 29, 2012

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My darling son Ben,

I am sorry, sorry for so many things. It is so easy for me to get caught up in my day, in the hustle and bustle of my job, of the seemingly never-ending list of things I need to do around the house or for you and your brother or for Nicole or for friends or for family. I need to get dinner ready. I need to do the dishwasher. I want to play on my phone. I want to have downtime and sit on the couch and watch some mindless tv. I get frustrated when you can’t come home and simply want to do the same. I expect you to be more aware and understanding of my mood, of what’s “expected” of you, to not raise your voice or express your frustration or exhaustion or aggravation at the end of your day, a day that is so much longer, more involved, more difficult and more draining than any of us could even begin to comprehend.

So you raise your voice. You hit your hand on the table in frustration. You squeeze your brother too hard when goofing around. You say the phrases you know will trigger an outburst in me: “stop it” or “get out” (your own personal F-word). You tell Nicole you don’t want to answer her questions anymore and you “want to talk to Daddy” and then listen as I tell you you made her sad and it’s not okay. And then you feel bad and ask, repeatedly, “Nicole happy? Nicole happy?” because you know you said something that upset us, because I always make a point of telling you that you did. And then you get sad. And you apologize. And you withdraw into yourself and, at the lowest points, tears well up in those big beautiful eyes and you look at me, with the anguish in your heart painted on your face, squint your eyes as tears roll down your cheeks and do your absolutely silent cry, mouth open so wide, which absolutely tears my heart to shreds.

And then, THEN I realize I was too hard on you, too quick to tell you what you shouldn’t do or did do your need to do. I was selfishly focused on my own personal pity party and how Daddy just wants some quiet relaxing time at the end of his oh-so-difficult hard day and has little patience when it comes time to welcome his beautiful, amazing, caring, sensitive son home. My focus is on myself, or on everyone else and how I feel you should be treating them, instead of putting you first, looking at the world, our home and each situation through your eyes, and not taking the extra second to contemplate the simple fact that you saying “I want Daddy” is not you being mean to Nicole or shutting her out, but instead is your way of letting us know that you want to talk to Daddy. Nothing more, nothing pointed, nothing mean. You don’t have the vocabulary that we do, and while your words may be limited, as your father I should know and take them time to realize that simple fact. You wear your heart on your sleeve and, of all people, your own father should be the one you can expect to understand, empathize and be able to accept how you express yourself and what it is you’re trying to express.

Ben, I am sorry. I am sorry for so many things. I’m sorry that I go through waves of diving into every single web site that talks about amazing treatments or approaches for “dealing with” Autism and get all hot-to-trot on what we should could maybe look at trying for you. On my computer or on my phone. While I leave you to watch Netflix on your iPad, right beside me. Instead of playing with you, engaging with you, taking the time to listen to you describe in minute detail the way the toilet flushes in the airport you went to months ago. You have your passions, you have the things that excite and make you happy, and while I feel I’ve come a long way in recent months in turning a corner from trying to force you to not focus on the things you’re passionate about to instead embracing them as what the are: things you’re passionate about, things that make you happy, things that comfort you, things that are of such burning interest in you that you DO reach out and want to share and communicate about them to others. And I promise you I will do more to be more understanding, and also genuinely interested. I want to engage with you more and, dammit, if talking about the function and sounds and colors and details of toilets is the topic that helps to build and strengthen the bridge between your world and mine, then I am all in, whole-heartedly. I want to know everything about toilets – tell me, talk to me, share with me your excitement.

This is not a pity party. I am not wallowing or letting myself get mired in apologies and promises to be a better daddy. I don’t doubt for a second that I am a good father to you. I know my love for you is as endless as the pride I take in every single thing you do. You are an amazing kid, so incredibly smart and gifted and insightful and amazing. I regret the fact that it’s all too easy for me to forget all of that in the day-to-day grind and instead only realize during the painful moments of loneliness I feel when the house is empty, when you go to your mom’s house for her half of the week with you… It’s only then that I seem to be able to sit back, with a calm head, and feel the hurt of loneliness because I miss you so much and pangs of regret over moments I lost my cool, didn’t see the world from your vantage point and instead tried to force the conventions of the “typical world” onto you. When it should be the other way around – you should be able to expect your father to focus instead on adjusting his expectations and his world to you.

You have the biggest heart of anyone I know. You feel more deeply, more passionately and with more purity than anyone I have ever met. Even in those moments when you’re expressing your anger or frustration or whatever negative emotion you may be feeling, I need to do all I can to realize what’s going on and reach out to you with an empathetic heart instead of slapping down your “grouchiness” and tell you that you’re not being a good boy or your making someone sad. And when you’re happy – when you’re so blissfully giddy with overflowing happiness – I should make sure you know how much I love to see you that way, to share even more in your glee….so that when you find that amazing singing & dancing Elmo doll on the shelves at Target, or you’ve flushed the same toilet in that public restroom for the 10th time and your eyes light up and your smile fills the room like a kid who just opened the most amazing gift on Christmas morning, you should be able to look at your Daddy and see a mirrored reflection of the same elation, the same boundless happiness, so you know that your bliss is shared. That I understand and want you to share your happiness and passions with me.

There is unyielding sense of feeling overwhelmed in my journey as your father, as there are always so many things I worry about. Should we try this treatment or that one? Should we more seriously consider the prescription for (much heavier) prescriptions that your neurologist prescribed several months ago but has set collecting dust on the counter because of my preconceived notions of it being a sledgehammer approach? Is all the research I do online make me fall pretty far too easily to the “autism cult” of false hope in magic “cures” (such an ugly word) or ways to make you, my darling and amazing boy, more “typical?” What does the future hold for you? What happens when you turn 18? What happens to you when I die?

I can lose myself in those fearful questions for hours….and I often do. That’s not to say they’re not legitimate, or worth the time to think through and explore. But I can’t let them be all-consuming, and I sure as hell shouldn’t be thinking about those things or looking into those things or focusing on those things when you’re sitting right beside me, in the safe comfortable environment of Daddy’s house that you love so much, instead of talking with you, playing with you, engaging with you.

With your unbelievably crazy schedule, I’m lucky if I get 2-3 (waking) hours a day with you, and that includes getting you ready for school, eating dinner, bath time and tucking you into bed. That time is precious, especially when for half of most weeks I don’t get to see you at all. That special time we have together needs to be focused on you, engaging with you, being a good father and letting you be a happy and goofy and fun-spirited 8-year old. There’s all the time in the world in evenings and the days you’re not at my house to do my research and think about the bigger picture items that so often plague my brain, but never enough time to tickle or chase or play basketball or smash the tether ball together.

I miss you Ben, and I love you so, so much. I cannot wait to come home and have you back with me so I can start to do a better job of being there for you, seeing the world and your words and your behavior from YOUR point of view. So that when I give you that last (of several) good night hugs, or when you bound out the door to go to mommy’s house for a few days, I can send you off with a smile and know that during the time we had together I was a good father and not wrack myself with regret or guilt over what I should’ve done, or should’ve done differently.

That change starts now. No more regret or beating myself up if I, or you, have bad days. I love you, I know I’m a good father to you, and I want to make sure you know how loved you are and how you can always feel safe and secure and understood and happy when you’re with me. So come here, squeeze my cheeks and ask Daddy to talk like a pirate and say “Aaahhrrr, matey!” – let’s have some fun, together, every single day. Tell me about that toilet, what side the handle is on and if it’s loud or soft and how, after Target, if you’re a good boy, you get to flush the toilet one time. Tell me all about it. I want to know everything. My beautiful boy…

Gluten/dairy-free Parmesan Chicken

Diet

November 3, 2011

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Gotta admit – pretty damned proud of myself, as tonight I made yummy gluten-free parmesan chicken for the family (only difference being we swapped in real shredded cheese for the rest of us after I took Benjo’s piece out of the oven.) It was delicious – everyone (esp. Ben) ate every single bite and I realized (yet again) that it’s really not that hard to adapt normal recipes to be gluten and dairy-free.

Credit to this Food.com recipe, which is what I adapted to make it full-blown Parmesan (and gluten/dairy free)…

Ingredients:

  • 2-6 frozen chicken breasts (1 per person)
  • 1 1/2 cups gluten-free pasta sauce
  • 2 tablespoons brown sugar
  • 1 tablespoon honey
  • Italian seasoning & parsley flakes
  • gluten-free corn flake crumbs
  • shredded Daiya “cheese”

Directions:

  1. Preheat oven to 375.
  2. Mix pasta sauce, brown sugar, honey, Italian seasoning & parsley flakes together.
  3. Place frozen chicken breasts in dish.
  4. Sprinkle a light coating of gluten-free corn flake crumbs on top of chicken breasts.
  5. Cover chicken breasts with sauce.
  6. Cover entire dish with solid covering of corn flake crumbs again – not entirely covered, but more than a light sprinkling.
  7. Bake for 60 minutes (or longer, depending on how well cooked chicken is – it should be moist, but not pink, obviously.)
  8. Sprinkle Daiya cheese over chicken the final 2-3 minutes of cook time. This gives it time to melt and brown if you like it that way.
  9. Serve (to happy, famished family)
  10. Bask in the glory of a yummy meal served!

A guardian angel

Personal

August 22, 2011

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August 22nd, 2011
To: Horizon Airlines
Re: Christine G***, our guardian angel

To Whom It May Concern:

I am writing this letter to ensure that a Horizon employee who went above and beyond the call of duty today is given the special recognition she so justly deserves: Ms. Christine G***, working out of Calgary, Alberta.

Backstory: my 8 year old son, Ben, is on the Autism spectrum and traveling is never easy for him (nor for me as a result.) Any change in his daily routine is very difficult for him to adjust to, and when you add large crowds, loud noises and big line-ups at an airport, it’s incredibly rough on him (and for me, as a result.)

On Friday, August 19th we were flying out of Calgary, returning home to California, and unfortunately the line up to go through customs was incredibly long. Ben was already having a tough time and this long wait was very difficult and frustrating for him, not understanding why we couldn’t just walk on up and through the doors. He kept trying to do so (with me calling out & chasing after him when he walked away from me & his brother, still waiting in line) and into the Nexus/special needs line (something I wish I knew had existed before today.)

He ended up right in front of Christine G***, who was pushing a lady in a wheelchair up the special needs aisle. Ms. G*** called out, “Beep beep beep” to give Ben a head’s up that he was in the way, However, and most regrettably, I thought I heard her speaking sharply at my son to get out of the way (likely a result of the loud noises all around us and, admittedly, my own frazzled brain trying to keep an ASD kid focused and calm in the midst of the chaotic world around him.) As a result, I snapped at Christine, barking out, “Ma’am – don’t yell at my son. He’s Autistic!” as I pulled Ben back into line with us.

Her immediate reaction caused my heart to sink: her eyes went wide, the surprise and pained look in her eyes evident as she responded, “Sir, I did not yell at your son… I didn’t yell…” and I realized I had made a mistake: she did not yell at my Ben, and my frustration with the day caused me to lash out at her in error.

Ben got even more upset after this, running away from me and curling up in the corner (undoubtedly as a result of hearing his father lose his cool and raise his voice, something I should know better than to do when he’s already frazzled.) While walking to get back in line after retrieving him, Christine showed her true colors when she asked me (note that this is immediately after I had snapped at her) “if we wanted to follow her and her guest, she would lead us down the ‘special needs’ line.”

I readily accepted, and quickly apologized for my outburst. She was gracious and understanding, telling me I needn’t worry in the least and letting me know that, in the future, I could coordinate with whatever airline I was flying to ensure we didn’t have to wait in such huge line-ups.

We made it through customs, only to find that the line-up for security was almost as long as the one we just passed. Unbelievably, and most fortuitously, Christine was again right behind us and instructed us to follow her again and she’d help expedite our passage through security…which she did, bringing us to the front of the line so we could quickly get through and my son could avoid his (now imminent) total meltdown.

Once we cleared security, I instructed Ben to go give Christine a big hug and say thank you, which he did. And then I did the same, with tears welling up in my eyes, thanking her profusely and telling her she was “our hero” for the day.

And she was. Not only did she handle being (falsely) accused of snapping at a special boy by his highly-sensitive father, but she then took that same family through two giant line-ups and helped us avoid a huge meltdown by my son.

I must have thanked her 10 times, but that’s nowhere near enough to express the sincerity of my gratitude – not only for her understanding of my snapping at her, but most notably for taking the time and showing the genuine concern and empathy for my son to help us like she did… and doing this all with a smile on her warm, caring face.

I literally was crying tears of happiness and gratitude once we walked away from her at security and immediately realized that she had helped restore my faith in humanity. As the father to a special needs child, it’s all too easy to feel (and/or imagine) the stares of unknowing passer-bys who can’t possibly understand why your child is throwing a tantrum about wanting to go to a bathroom, and to assume everyone just thinks you’re a pushover of a parent. Today was honestly the first time I snapped at someone I felt was being rude or ignorant to my son, and unbelievably, it turns out I was mistaken… yet this same person saw through my mistake and helped us out when I/we needed it most.

Christine G*** is truly an amazing person, someone who goes way past the extra mile to help others, and I hope that she can be the deserving recipient of any employee recognition programs you may have. Even as I type this, tears are welling up in my eyes once again as I think about the help and genuine kindness she showed us today.

I am forever, forever grateful. Thank you Christine – you are one of my absolute favorite people in the entire world.

Most sincerely,

Blaine W.

“Don’t give up on me…”

Personal

July 25, 2011

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Another touching song with absolutely heart-wrenching lyrics that resonate so strongly when it comes to darling Ben…


Victoria Boland – “Don’t Give Up On Me (Autism Song)”
It’s so hard for me to say “I love you”
The words just don’t come out the way they should
And I know you don’t believe me, when I’m being so bad
That I’m trying so hard to be good

And at those times when you reach for me
And I push you away
Deep inside I just want you to stay, ’cause…

You’re the light in my dark, the current in my stream
My sun when it’s raining and drowning all my dreams
Without you, I can’t make it … so don’t give up on me
There’s a whole lot of love inside the person you can’t see.

I wish I could say how much I need you
I want to show how much I love your smiling face
But something deep inside keeps holding me back
And I’m lost in my own little space

Forgive me if I’m screaming…I’m desperate to show you
Who I really am, I just wanna know you….’cause

You’re the light in my dark, the current in my stream
My sun when it’s raining and drowning all my dreams
Without you, I can’t make it … so don’t give up on me
There’s a whole lot of love inside the person you can’t see.

“You’re the most incredible thing…”

Personal

July 22, 2011

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No introduction necessary – listen to the song below, read the lyrics, and hope you do a better job fighting back the tears than I did…


Hey Rosetta! – “Welcome”
You’ll be a bright light coming out of the dark
All the doctors blinking hard
You’ll be lightning coming out of the storm
It’s a message, it’s a miracle

You’ll do all right
You’ve got your mother’s eyes
You’ve got your daddy’s head
Everything you need

For this hard ride
They’ll be strapping you on
All the ups and downs and you can’t get off
Yes, trouble we’re handing off
And you’ve got to do better than us

It’ll be all right
You’ve got lots of time
Got your daddy’s love
Everything you want

I can feel you and what you’re gonna be
You’ll be stronger, you’ll be smarter than me
Oh baby, I’ll say it again
You’re the most incredible thing

Sorry, this is it
It’s cold and hard and badly lit
And there’s no backing out of it
So forget where you’ve been
It’ll never be that good again
And we must only look ahead
Soon you’re 33
And everything you tried to be
Is pulled apart by fear and greed

Let young hands build you up
And carve your face in honest rock
With sunlight on your noble jaw
May young hands build you up
I’m happy that you’ve come along
I’m happy that you’ve come, I’m happy that you’ve come

Oh baby, I’ll say it again
I’ll say it again, I’ll say it
You’re the most incredible thing

A return to Respen-A


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It’s been a couple months since we decided to take Ben off of Respen-A. He’d been on for 4-5 months and while the treatment definitely wasn’t hurting him, we weren’t seeing any dramatic improvements, and we also were eager to try some additional treatments/supplements that seemed to have brought about positive changes in other ASD kids (i.e. GABA, fish oil, DMG, etc.) So, we took Ben off Respen-A.

At first, we didn’t see any negative effects in stopping – maybe he was a bit excitable or “stimmy” in the days immediately following, but that seemed to level out. Fish oil and GABA/Inositol were introduced, with no big/pronounced improvements as a result (unfortunately.) As covered in recent blog posts, we started to notice that Ben’s OCD tendencies seemed to flare up, then settle down, but something that seemed to stay escalated was his propensity for being easily upset – i.e. 0-60 in the blink of an eye. If he was told “no” or told to do something he didn’t want to (or to stop doing something he wanted to), he’d fly off the handle. This was what we brought up to his neurologist, who recommended putting Ben on Prozac. And that Rx still sits on my kitchen counter, a cold reminder of how we’ve apparently reached the end of the road (for now) with regards to what traditional medicine can do for us. Our paths have diverged from what Ben’s specialist thinks is best for him, and I’m not interested in continuing down that road (at least not with him.)

So we tried DMG. Within 2 days, Ben was so hyper/overstimulated/easily upset that we decided to stop. Apparently DMG helps most ASD kids, but can have these type of negative side effects for a small minority of kids. Lucky Ben. Truthfully, it could’ve also been lousy timing – his school year had ended a few weeks back (and the summer always brings a painful loss of routine and schedule, which is a nightmare for any ASD kid and their parents), he’d just got back from a weeklong trip to Santa Cruz with his mother (a fun trip, but again: a break in the regular routine) AND he had just begun summer school (new school, new teachers, no chaos.) In hindsight, clearly a lousy time to try introducing a new supplement. Still, his behavior did seem to settle back down after stopping DMG… and at least the full-on meltdowns dissipated. No more screaming/kicking/crying in his room – I hadn’t seen those outbursts in months, if not years. It’s so easy to forget that this used to be the norm and was so scary when it came back on full-force like it did. I was shattered inside – took such a heavy toll on me… and I can’t imagine what it was like for Ben.

So I started to search for “what next” – B6/magnesium? Super NuThera? Then it dawned on me: instead of lucky Google searches and seeing what shows up as as being the most popular treatment from other parents, I should talk to a professional, someone who works with kids and gives professional opinion on what biomedical approaches we can try. So I’m going to look into that more this summer – it’s expensive (as DAN! doctors – “Defeat Autism Now”/biomedical practitioners – are not traditional doctors, so their fees are not covered by health plans), and it’s inconvenient (in that there are only 3 DAN! doctors in Sacramento, but I’m leaning towards going with one in southern California who seems to be at the top of this field)… but ultimately, if it gives us any help/advice/insight on different approaches we can take with Ben, then it’s all worth it. Even if it doesn’t, I’ll feel good knowing we went down that road and exhausted all avenues, and didn’t rely solely on my Google searches.

Which leads me to Respen-A, and it’s new blended chord formulation (different formula, apparently more effective.) In hindsight, it’s clear that a lot of Ben’s ‘setbacks’ as of late coincide with him going off Respen-A. At the time, we weren’t seeing any huge improvements, but obviously got used to the “normalcy” of Ben’s even-keeled behavior. Seeing how things have been the last few weeks (granted, with school ending, etc.), I think the Respen-A was really helping him maintain that steadiness that he’s now missing. I had read that some parents take a “Respen-A vacation” to see if their kids even notice or react when the Respen-A treatments stop for awhile, and I’d say it’s clear that Ben has been affected by going off. So now he’s going back on – shipment should arrive this Friday, and we’ll get those little patches back on his back and see how he takes to the new formula.

Obviously, I’m hopeful and optimistic, as that’s all a parent can be. It’s not a matter of trying to “fix” Ben, only to help him be as comfortable in his own skin as he can be, and lately he has not been. And that absolutely tears me up inside. So the journey continues, 2 steps forward and 1 step back… but always moving forward.

An update on my beautiful boy


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Sadly, it’s becoming all too common that I begin my posts with a “it’s been quite awhile since my last update…” The reasons remain pretty much the same as in the past: on one hand, lots going on with Ben (and when I step away from the blog for a few weeks it’s somewhat overwhelming to think about trying to capture and document it all, which just becomes an endless loop the more time that passes), and also the realization that I don’t feel as compelled to share every single nuance and detail of what’s going on with Ben these days. There’s middle-ground, however, and that’s what I’ll try to focus on with this post. Where to begin…

In general
Bennie’s been doing great these past few weeks: happy happy happy, finished out his school year strong and with more awards for citizenship (which means others recognize just what a sweet, warm-hearted boy he truly is), and starting summer school starting next week. Usually that’s a recipe for disaster, as typically summer school is staffed by student teachers, with little organization and lots of chaos (recipe for disaster for ASD kids who need structure and routine in their days.) However, thankfully, Ben’s regular year teacher will be taking the reigns on Ben’s summer school class this year, which will be fantastic.

Ben also just “graduated” out of his ABA (applied behavior analysis) therapy. For the past few years – actually, pretty much since we moved to California – Ben’s been fortunate enough to receive in-home ABA therapy 4 days a week (provided by the excellent staff @ Learning Solutions and funded by ALTA.) Ben’s come so far over the years thanks to this intensive therapy – it’s amazing to think where they started (teaching him how to properly hold & use scissors and button his shirts) and now where he’s ended up (engaging in back-and-forth conversations, problem solving skills, reading and answering questions about what he just read, etc.) It’s also a bit scary, as not only has the therapy helped him every single day, but (frankly) it’s also been a regularly scheduled block of time 4 days a week that Ben could count on and we knew would fill his time. Now that it’s over, we’re going to have to fill the time and find new ways to engage Ben and keep his development moving forward. Thankfully, he will still continue his weekly “group play” group sessions @ Learning Solutions once a week.

OCD
While Ben’s overall mood continues to remain pretty much in check – i.e. he rarely gets upset and irate and flips out anymore (something that seems like a distant memory, but really was just a few months ago that he could absolutely fall to pieces and take up to an hour to regroup.) However, the OCD and perseverance remains – not too extreme, but noticeable, especially as his emotional outbursts subsided and these OCD tendencies (previously lurking more in the background, but overshadowed by the outbursts) were now able to come to the forefront.

Bennie had his quarterly doctor’s appointment with this ASD specialist/neurologist in late May, and we took these concerns to his doctor to get in his input. Almost immediately, he recommended putting Ben on Prozac. That was like a punch in the gut for me, as it seemed like a sledgehammer approach. I don’t doubt for a second that his doctor is knowledgeable and only has Ben’s best interests at heart, but given my concerns with the amount of pharmaceuticals already pumping through Ben’s body, and truthfully I went into this appointment thinking we could hopefully cut back the amount of meds he was taking… so adding a jackhammer like Prozac into the mix just knocked me back on my ass and sent my brain spinning. We talked it through with the doctor, took the time to understand his point of view and appreciated how he addressed the fact that any chances of negative side effects were dramatically outweighed by the likelihood of positive effects. Even still, I walked out of there in a daze… but confidently knowing that we were not going to get that prescription filled anytime soon.

New treatments
Instead, we decided to try some other treatments that I’d read had been effective in helping kids with OCD, ADHD and/or anxiety control their impulses (not to mention hearing from friends who had seen positive effects in their kids dealing with similar issues.) We finished up Ben’s last package of Respen-A, deciding to stop that treatment (as we hadn’t seen any dramatic positive results from it, unfortunately), take a week off, and then begin introducing GABA+Inositol capsules into his daily intake of horse pills (geez the kid takes a lot of pills, but does so like a champ.) Here’s a quick overview:

GABA is a neurotransmitter in the brain, thus it is an essential substance that supports proper brain function. GABA is naturally produced in the body from glutamic acid with the help of vitamin B6. Glutamic acid is an amino acid that helps decrease the activity of brain cells. GABA also works in synergy with other nutrients such as niacine and inositol to reduce symptoms of stress and anxiety. Some anti-anxiety drugs such as benzodiazepines stimulate GABA receptors, thus delivering the same relaxing and calming effect as a GABA supplement.

Basically, my thinking was it can’t hurt to try this first… see if Ben realizes any positive results… and if not, then consider going down the stronger (pharmaceutical) route. So we started him on a formulation called GABA Plus, which combines GABA with Inositol.

The first week, we didn’t really notice any big difference (and truthfully were wondering if we were perhaps seeing a slight regression due to taking him off Respen-A), but by the 2nd week (and slightly upping the dosage), the subtle-but-visible indicators started to appear. Yes, he still perseverated on toilets – going any place new in public immediately resulted/results in him asking if he can go to the restroom – but that’s kind of always been the case, and while it’s difficult to put a longer-term view on things (so hard to remember a month ago, let alone a year ago), summers are always tough for Ben, as school is out, routine is busted, and now ABA is done and his daily reality is changing… which is always when his toilet fixations ramp up. Anyway, the toilet fixation remains, but the stronger OCD tendencies we’d been seeing as of late – always hugging 3 times, aligning the kitchen chairs just so, getting upset if I didn’t throw a ball to him 8 times (and he caught it every time), etc. – appear to be vastly dissipated, if not gone entirely.

I can’t say for sure that these positive changes were solely the result of introducing GABA+Inositol into his body, but sure as hell it hasn’t hurt and the timing seems to suggest it’s helping. He’s still happy, he still sleeps like a rock, he’s more social and communicative than ever before, so it seems we may have a good mix of medicines, treatments and therapies on the go right now. The last thing I want to do is rock the boat, and that prescription for Prozac looms large in the background: a last resort, but also something I’m desperate to avoid if at all possible. I will say that if it/when it comes time to try, I will be positive about it – if it helps Ben, no one will be happier than me. Just right now, with other non-medical, non-pharmaceutical options available, I want to try those first before taking the big step into big meds. I also have purchased a literal library of books from Amazon over the past couple months, and now it’s long overdue that I dive in once more to absorb and learn all I can on new ways to help my beautiful boy.

So here’s to the summer – play dates with classmates, fun summer school, swimming in the backyard pool, trip up to visit Grandma, Auntie & cousin in Canada, and many more good things. Ben is still the happiest, most beautiful boy in the world and every day I look for ways to make his life that much better, easier, more rewarding for him. He makes me smile every single day. Every. Single. Day. I treasure him more than words can say.

Yet another long overdue update…

Misc

April 18, 2011

4 comments


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Yet again I begin a post with “it’s been awhile since I last posted…” and feel the pangs of regret over that fact. For whatever reason, my self-imposed vacation from immersing myself in all things ASD has continued, which is not to say I haven’t been focused on my darling boy, but just that my obsessive reading, exploring, pondering, etc. has subsided as of late, so as not to overwhelm myself as I managed to do a couple months back. I’m still avidly following my many sites and blogs, and bookmarking away (one day I’ll build out the “Links” section of this site), and also buying up damn near every Autism-related book that Amazon.com sells… but they’re piling up, unopened, waiting for me to dive back in (at a more manageable pace.)

But enough of the mea culpas.

Bennie has been doing great these past few weeks – no change in any of his treatments or medications (trying to maintain status quo likely through the summer.) He’s been doing very well at school – still loves going every day, still tells us about who he plays with at recess, what books he reads as part of his daily visits to a “typical” 2nd grade class for reading time, and is always bringing home new songs he learns at school to sing to us around the dinner table or at bedtime. Last week (after a very positive dental check-up), when I was dropping Ben off at school, his school principal approached me in the office to introduce herself to me and to tell me just how great Ben is doing and how much they love him. The sincerity of her words made me swell with pride, as it’s so wonderful to know that others in Ben’s life also see and respond to the beauty and happiness he radiates.

He also (finally) lost a tooth “naturally” – that is, didn’t have to go get a baby tooth yanked at the dentist because the new tooth was coming in at a wonky angle because the baby tooth just wouldn’t let go. The tooth was really, really loose and wobbly, and I was just getting ready to brush his teeth at bedtime. I started to put the toothbrush into his mouth when I thought I saw a blob of toothpaste on his tongue. Just as I put the brush in his mouth, it dawned on me that it couldn’t be toothpaste (as I hadn’t put the toothbrush in his mouth yet)… realized his tooth had come out all on it’s own… and then…. *gulp* He swallowed his tooth! My initial uncertainty was calmed when some quick Google searches proved that it’s not dangerous that he did so, and obviously his body will take care of moving the tooth through him… much to his younger brother’s delight, as he expressed great merriment that “Ben will have teeth in his poop!” shortly.

Food wise we remain on track – very very strict with no dairy, no wheat, no soy, and the results of this strict vigilance are evident daily. Ben simply does not have bad outbursts anymore. Period. He may get grumpy or ornery at times – but who doesn’t after a long day (especially days as jam-packed as his are) – but the lashing out, the screaming, the inconsolable outbursts are a thing of the past. He is always happy, singing, cuddly, affectionate and, even when grouchy, he’s well-behaved. Amazing to see, hard to remember what it was like not that long ago.

He’s also fanatical about basketball – he’s always liked “shooting hoops” and loved playing in his weekend league (which is now over, sadly.) He’d play quite a bit at his mom’s house, so with his 8th birthday coming up (!!), I suggested to my mom that maybe he’d like his own basketball net at my house, which she quickly purchased and had delivered, so it was ready for him when he returned to my place mid-last week. Since then, I can’t even count the number of hours we’ve spent outside, shooting hoops, cheering for each other, (trying to) play games of 21, and just watching him make the most impossible shots with this wholly-unique sideways lob. Kid is amazing.

Amazing, beautiful boy, who continues to do so well and be so full of life, love and happiness. I couldn’t be prouder.

“Not in my castle… ON… THE…. CLOUD!” (Love you Ben)