Posts in "Personal"

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…

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

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.

A long-overdue update…


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It’s been some time since I last posted to the blog, and not for lack of desire to do so. Truthfully, I found that I needed to pull back a bit from my immersion into all things Autism-related, as it was becoming all-encompassing for me, both mentally but also emotionally – i.e. I would get so excited about this article, or this possible treatment, or this something to try, and then would find myself getting worn down when I saw Ben was having a bad day, or the positive changes I’m so desperate to help him realize weren’t revealing themselves quickly enough (a relative term, I admit.)

That being said, my quest continues and my commitment is unwavering – I just need to learn to do a better job tempering my excitement, expectations, hopes and emotions as they relate to working with and for Bennie to improve all things in his life.

So, here’s what’s been going on (commence braindump):

Respen-A: Ben’s now been on Respen-A for several weeks and while he hasn’t experienced any negative side effects from the treatment, admittedly we’re also not seeing any dramatic improvements. In the first couple weeks, I could swear I noticed more complicated speech and questions from Ben (i.e. “Where did you buy it from?”), but (full disclosure) his ABA therapists had been focusing on “W” questions around the same time, so it’d be tough to credit that solely to Respen-A. Still – it hasn’t been hurting him any, and the FAQs associated with Respen-A do state that some kids can take several weeks for the positive improvements to surface… and other parents do a “vacation” from Respen-A for a few days (i.e. take a weekend off) to help gauge the positive effects of teh treatment (by removing it and seeing what, if any, repercussions there are as a result.) So we’ll likely try that soon, just to see.

Also worth noting is that the doctor who created Respen-A has come up with a new formula for it that they’re seeing some positive early results from:

We currently are working on a new formulation of the Respen-A to try and increase the effectiveness we have seen thus far. The new formulation is called 4X12C at this point (nothing of importance to you, but this is how you will hear it referred to during the trial). A few parents of long term Respen-A users have tried this new formulation and tested it in their children, and up to date, they are seeing much better results than with the original formulation of Respen-A.

So we’re likely to try that and see if we notice any positive improvements/results.

FOS: In all my reading online, I read about how it’s typical for some ASD kids to have “gut issues” – that is, build up of bad bacteria and/or yeast in their stomachs, which can leak into their bloodstream and affect their personalities/brains (“leaky gut syndrome.”) I’ve seen first-hand how Bennie can react within minutes to eating something and then get incredibly hyper and/or stimmy (giggling uncontrollably, hyper, bouncing around), so this seemed to resonate with him. As a result, we’ve put him on a daily dose of prebiotic FOS (fructooligosaccharides):

FOS: a Supernutrient Documented to Rebuild Intestinal Flora, improve mineral absorption, and more
• A naturally sweet, indigestible fiber derived from chicory roots, FOS (fructooligosaccharides) are one of the best-documented, natural nutrients for promoting the growth of Lactobacilli and bifidobacteria bacteria, a key to sound health
• Minimal impact on blood sugar levels
• Increases populations of beneficial bifidobacteria in the colon
• Reduces populations of harmful bacteria, such as Clostridium perfringens
• Improves calcium and magnesium absorption
• Improves liver function

Thus far, no negative side effects as a result, and it’s just 2 more (large) pills (poor) Ben has to wolf down in the morning (kid takes 10 pills every morning – wow.)

Strict GFCFSF diet: Probably the biggest, and most positive change, we’ve made when it comes to Ben these past few weeks is a much stricter adherence to a gluten/casein/soy-free diet (especially cutting out the soy.) Now that I’m reading the ingredients label of every single thing he eats (wow it’s amazing how many things you can find soy in), the frequent rashes and/or intolerance-triggered outbursts have basically been reduced to zero. There’s still so many yummy, healthy foods he can enjoy and, in fact, the menu choices have expanded dramatically now that I’m shopping at places like Gluten Free Specialty, Whole Foods and Sacramento Natural Foods Co-op – Ben’s now enjoying homemade pizza, tasty chicken or beef tacos, even friend chicken (and soon: perogies!) and he’s loving it. The kid can eat (I don’t know how he stays so skinny, but I’m envious, I’ll say that much.) Ultimately, it’s just great to see that we’ve managed to cut out the negative reactions associated with the food he’d previously been eating (SOY), and to see him enjoy so many tasty dishes.

Therapies: In the question to seek out whatever additional help there might be, we started to go with Ben to a therapist who supposedly specialized in kid and ASD/ADHD-related issues. She meant well, and I’ll definitely credit our (few) sessions with some eye-opening insights (mostly due to Ben’s mother & I talking about how we handle/do things differently at our respective houses so we could standardize to provide a more level norm for Bennie), but after just 3 or 4 sessions it became clear that this really wasn’t going to be all that helpful for us – and especially Ben – so we moved on.

We then visited with a child psychologist (also specializing in ASD/ADHS issues), but after he spent a 1/2 hour 1-on-1 with Ben, he regrettably informed us that due to Ben’s limited abilities to communicate (either expressing or understanding), he really couldn’t help “crack through” to Ben and help work through issues with him.

But the search continues – we’ll find someone.

Allergist: long (long) overdue, but Ben was finally tested for the full suite of allergies. (I would love to regale you all with how epically BAD the allergy testing went and how it took me + 3 other people to hold Ben down as he screamed while getting blood drawn, but truthfully I’d rather just forget about the whole awful experience.) Turns out Ben has a mild allergy to eggs. That’s it. Nothing else. On one hand, I wasn’t surprised, but on the other hand, what about gluten? Soy? Milk? The allergist explained that just because he doesn’t have a physical allergy to these things, it doesn’t mean he doesn’t have an intolerance to them (see “leaky gut” above) – so: we remain on the strict GFCFSF diet. But good to know he won’t be going into anaphylactic shock anytime soon.

Doctor: we had our quarterly session with Ben’s specialist (a neurologist focusing on ASD kids) a couple weeks back and he could see that Ben was doing “better” compared to our last visit. He suggested not changing anything (treatment or prescription-wise) for the next 3 months, to give his brain & body a chance to level out and process the recent changes in treatments. I realized then – and in light of the many things we’ve tried/changed in Ben’s treatments these past couple months – how much his initially being on Risperidone helped him overcome his stimmy and obsessive behaviors… but the side effects of up’ing those meds are just too damn scary to risk (in our minds)… so the hunt continues.

OCD: the one area that really hasn’t improved, and has stayed regrettably regressed, is Ben’s uncontrollable obsession with public restrooms (flushing toilets and running water in sinks) and the stimmy repetition of songs, tv show songs & dialogue, etc. These were all things that were really pulled into check when he first went onto Risperione, but now that his body has built up a tolerance to his current dosage, they’ve come back full force. And it’s really hard – formerly “safe” places like our weekend forays to Sky Zone or Target have now ended with me literally carrying a screaming, crying, kicking kid out while he wails for the bathroom and passerbys pass judgment with their searing glances (just say 1 thing to me, I dare you.)

We’ve talked about this with Ben’s ABA lead therapists, who’ve suggested going back to doing social stories every time we go out anywhere, even if it’s to normally “safe” places:

Social Stories are a tool for teaching social skills to children with autism and related disabilities. Social stories provide an individual with accurate information about those situations that he may find difficult or confusing. The situation is described in detail and focus is given to a few key points: the important social cues, the events and reactions the individual might expect to occur in the situation, the actions and reactions that might be expected of him, and why. The goal of the story is to increase the individual’s understanding of, make him more comfortable in, and possibly suggest some appropriate responses for the situation in question.

As well, I’ve noticed some (hopefully positive) responses in Ben when I tell him “no more bathroom talk” when he brings up restrooms in conversation – this seems to register with him, and while he may not stop entirely, he pauses for thought, acknowledging the request, so that’s something. I’ll take whatever little, tiny wins I can get.

Super Proud Daddy Day:
the most positive thing I have to share is March 10th, 2011 – on that day, Ben did me proud in 3 separate ways:

  1. He had to do a school project “all about Ben” and in the portion where he had to write down what he wanted to be when he grew up, he wrote “Daddy.” Wow.
  2. At his school assembly, Ben was presented with an award for “Citizenship & Character” (the only one in his class who received the award) – you should have seen the smile on his face when he stood in front of the assembly to receive his award!
  3. Unexpectedly, I received an IM from Ben’s mom mid-afternoon, which began with “Hi Daddy – it’s Ben.” I then proceeded to have an instant messaging conversation with Bennie with him doing the typing! (obviously with his mother’s help, but his answers & his typing!) I was astounded. And beaming.

So there’s an update over the past couple weeks – lots going on, lots of positives, but many miles yet to go. Still – it’s about the inches won, not the game, and step by step we’re getting there. He is, and remains, the happiest and most loving kid on the planet, and I am the luckiest father as a result.

A journey bright and pure

Personal

February 28, 2011

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I am not a “man of faith” in any way, shape or form, yet despite the religious undertones of this song, I find myself thinking of my Bennie every time I listen to it. The poetic lyrics seem to perfectly capture a father’s love for his child, and all the hopes, dreams, fears and compassion I feel for my darling boy… “I don’t believe in the existence of angels / But looking at you I wonder if that’s true…”

Nick Cave & The Bad Seeds – “Into My Arms”
I don’t believe in an interventionist God
But I know, darling, that you do
But if I did I would kneel down and ask Him
Not to intervene when it came to you
Not to touch a hair on your head
To leave you as you are
And if He felt He had to direct you
Then direct you into my arms

Into my arms, O Lord
Into my arms, O Lord
Into my arms, O Lord
Into my arms

And I don’t believe in the existence of angels
But looking at you I wonder if that’s true
But if I did I would summon them together
And ask them to watch over you
To each burn a candle for you
To make bright and clear your path
And to walk, like Christ, in grace and love
And guide you into my arms

Into my arms, O Lord
Into my arms, O Lord
Into my arms, O Lord
Into my arms

But I believe in Love
And I know that you do too
And I believe in some kind of path
That we can walk down, me and you
So keep your candles burning
And make her journey bright and pure
That she will keep returning
Always and evermore

Into my arms, O Lord
Into my arms, O Lord
Into my arms, O Lord
Into my arms

The magic of a cheeseburger.

Diet, Personal

February 23, 2011

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Hamburger!Tonight I made a special treat for Bennie and his brother: homemade hamburgers from scratch (first time I’ve ever done it, and surprisingly quick and easy to do so), seasoned up with yummy spices, and grilled to perfection on the BBQ.

To make it even more tasty, I added some (Daiya) faux-cheese on the patty when it was close to being done and toasted some GFCFSF burger buns I found at a recent excursion to Whole Foods (from a bakery in Davis whose name I can’t recall at the moment.)

Slam them all together and I presented Bennie with a whopper of a cheeseburger (no pun intended) – and he was in heaven! The poor kid has gotten used to eating plain ol’ patties, with no seasoning, cheese or buns wrapped around it… but tonight, he gorged himself on a huge, fresh, tasty, seasoned cheeseburger WITH bun. His eyes said it all (see the attached pic!)

The smile on my face during dinner was permanent — it’s the little things, but it felt great to let Bennie have something that most people take for granted… but to the best of my recollection, he had never before enjoyed: a cheeseburger.

Adventures in pizzaland

Diet, Personal

February 16, 2011

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Just like his father, Ben’s absolute favorite food is pizza – the kid can eat, but he takes it to a whole new level when it comes to this yummy, tasty treat. Every Friday night (pizza night at my house), he’ll sit down and plow through an entire medium pizza himself (always 3 slices at a time, as there as to be order to everything.)

In the days prior to him moving onto a gluten-free, casein-free diet, Mountain Mike’s pepperoni was a favorite. Once he had to go both wheat (crust) and milk (cheese) free, we found Amy’s Pizza, which was a popular and readily-available gluten-free frozen pizza available in most grocery store shelves. And so it went for a year or two, until my recent re-awakening when it comes to Ben and ASD — literally, one night I was laying in bed and it hit me like a ton of bricks: even though Amy’s Pizza is gluten-freen, it’s still got regular cheese on it. Cheese = milk = casein. I was horrified (and admit to immediately breaking down in tears) – all this time I’d been thinking I was providing a non-agitating, tasty pizza treat for my darling boy, and all this time I’d somehow managed to be oblivious to the fact that he was ingesting MILK every single time…

That weekend I went on a mission to find a GFCF pizza and found another variety of Amy’s Pizza that was dairy free. I was elated, but also curious as to how Bennie would like this new variety, as it had all kinds of fancy foo-foo veggies on it. I shouldn’t have been surprised that pizza is pizza in Ben’s eyes, and he wolfed that one down just as quickly as he ever did.

Then last week, literally just before I was about to put the pizza in the oven, I thought to take a look at the ingredients. Yup, no wheat, no dairy… but wait – what’s this at the bottom? Soy lecithin.

DAMMIT!!

Per my previous post, soy is kryptonite for Bennie, and the fact that soy lecithin also affects him means he’s affected hormonally as well as physically to soy (as soy contains “estrogen” but most are only affected to the soy protein in an allergic reaction.) However, at that point (again – I was literally just about to put the pizza in the oven), I made the decision to let him have his pizza, as I felt that whatever reaction he might have would not be as bad as me taking away his favorite part/meal of the week right when he was expecting it. Boy, did I make an error in judgment there.

This was Friday night. After eating the pizza, he got a bit of a rash on his inner elbows and cheeks, but not too bad. By Saturday the rash was worse and his behavior was pretty stimmy and obsessive (typical behavioral reaction to him eating something he shouldn’t.) By Sunday my poor boy was a mess – the rash was awful and red and itchy, but even worse he was an absolute wreck emotionally – it was almost like he was delirious, unable to focus, talking (and not understanding) in repetitive loops, sad & crying without reason, etc. Just gut-wrenching. All because I tried to give him his Friday night of happiness, fresh from the oven.

Never again.

That night, I sent an email to my favorite local gluten free shop in downtown Sacramento, Gluten Free Specialty, asking for help in buying ingredients to make Bennie GFCFSF pizza, and I quickly received a reply letting me know that they stock all types of tasty foodstuffs that would let me make Ben a fresh(ish) homemade pizza. So today I ventured out at lunch and had the proprietor, Melanie, guide me around her store to help me pick out exactly what I needed: ready-made/frozen GFCFSF pizza crusts, organic GFCFSF pizza sauce packets, GFCFSF shredded “cheese” (not really cheese, but a tasty replacement) and some organic canned items (such as pineapples) to decorate the pizza with.

This Friday I will transform my kitchen into a pizza-making factory and will prepare for my Benjo the most delicious, (near) fresh and safe pizzas for him to wolf down. I’m thinking I’ll even have him help me prepare the pizza, to make it that much more fun and exciting for him (and me.) And I can’t wait.

Special thanks to Melanie @ Gluten Free Specialty for all your help in making this possible – please know that you’ll be making a beautiful young boy very happy, and his father even happier.