Watching Daniel Bloom

10282067804_b07ab3070b_b.jpgI never expected – or even dared to hope – that I would ever write this update. It’s ridiculously long, but if you can get to the end, I think it’s worth it. I’m writing this in part for my friends and family, but mostly for the people who continue to stumble on this blog, most of whom I suspect are parents who are a lot like me.

The only way I know how to write this is by going back to the beginning, so I apologize if this feels redundant.

When I started writing here, I was petrified. I knew, with deep-down mother instinct, that something was wrong with my son.  But I also knew that there was so much more that was RIGHT with him.  Since my friends, family, and even doctors couldn’t give me any clear answers about why he wasn’t meeting developmental milestones, I found myself spending my days at work stressing and my nights on the internet researching, trying to find answers. I spent countless hours searching for a story about a kid that looked like mine with a happy ending .

Daniel was only 2.5 years old, but there were enough signs pointing to autism that I couldn’t ignore them.

Here’s the thing. Back then, I just wanted someone to let me know that despite my fears, things were going to be OK. But when I researched outcomes for kids on the spectrum, all I found were stories and stats that said independent living wasn’t realistic, employment prospects were minimal, and the chance of finding a life partner was even worse.

Looking at Daniel, I couldn’t reconcile the “lifetime of severe disability” message that I kept finding. I was convinced there were positive stories out there, but despite the millions of hits on Google for the term autism, I honestly couldn’t find them.

Around that time, I started writing here…and I very consciously chose the name, Watching Daniel Bloom.  I felt like if I put it all out there, and told the universe that we were absolutely GOING to have a happy ending, and that Daniel was GOING to bloom in front of our eyes…well, then I damn well better make sure I was doing everything possible to make sure that happened.

I also thought that maybe, just maybe, if I kept writing, documenting his progress through all the therapies, and believing …. I might just end up writing the story of hope that I’d been looking for during all of those desperate, sleepless nights searching on the internet. Crazy, wishful thinking, I know…but if positive thinking (and a lot of hard work on Daniel’s part) had the tiniest possibility of working, it was worth a try.

So that brings me back to today…

If you’ve read this blog or know us well, you probably know that in our world, January 2nd, 2013 marked much more than just the beginning of a new year. It was also when we visited a very experienced developmental pediatrician for Daniel to be assessed again… and it marked the day that we officially faced a new reality head-on.

Having already gone through 3 separate assessments for autism over the years, we honestly expected this new doctor to tell us once again that yes, there are substantial red flags, and yes, we should keep up with all the therapies, but no, there was not enough evidence to warrant a diagnosis. That’s not what happened.

Instead, within about 15 minutes of observation, the doctor turned to us and said in the most matter-of-fact way that Daniel “definitely has a lot of autistic traits and appears to be on the spectrum” and that we should go ahead and have the full ADOS-2 assessment.

She made it very clear that there wasn’t any question in her mind what the outcome would be.

After years of speculation, therapies, and assessments, I thought I was prepared for that moment. If you followed this blog, you probably thought I was prepared as well.

I can tell you now that I wasn’t. In retrospect, I don’t think you’re ever ready for someone to sucker punch you in the gut like that.

So, we walked out of the office, and I went from a state of shock to one of full-blown internal denial. Despite what I may have said at the time, I was on a secret mission out to prove that pediatrician wrong.

I spent hours reading medical journals, looking for any studies or research that would show that an autism diagnosis wasn’t final. I clung to the landmark study that was released in January of 2013 showing that a small minority of children (~15-20%) diagnosed with autism before age five end up “symptom-free” later in life. It became my mantra. Daniel may have a diagnosis, but he was NOT going to be autistic forever, damnit.

In retrospect, I was angry. Angry that someone would have the nerve to say that there was something permanently “wrong” with my child. Angry that I was being told that life was going to be harder for my kid. Life is hard enough already, for f@#$’s sake. And I was angry that my son was being put in this big bucket that I didn’t understand, and in so many ways didn’t seem to fit the amazing little person I woke up to each day and kissed good night every evening.

And if I’m really, brutally honest, part of me was angry that this thing they called autism was making life harder and scarier for me too.

But the more I read books and posts written by parents of children with autism, and even more so by adults living with autism, the more my attempts to prove that this was all a mistake – or a temporary situation –  felt wrong. Not just wrong, but negative and hurtful. I slowly came to realize that the things that made 3 different doctors agree on Daniel’s diagnosis were not flaws that he or I need to fix, but just some of the parts that make him Daniel.

There were things we needed to do to help accommodate those parts – just like we’ll get him glasses if it turns out his eyesight isn’t 20-20 – but the more time I spent wishing those differences away, instead of understanding them, the more time I was wasting, for both of us.

I’m not sure exactly when I came to that realization, but I think it was around the time I had my own health scare and I decided that I needed to spend the summer with Daniel and his sister (and give up my job in the process).

That summer …last summer…well, it was great. Daniel continued making very slow, but noticeable gains…moving “up and to the right”. And over time, I realized that having the autism diagnosis was actually more helpful than not having it. At least it gave me some guideposts, and I think it ultimately helped me be a more understanding parent.

So when Daniel entered the public school system for the first time in September (in SK), I was optimistic. Things seemed to be going OK – he was happy enough when I dropped him off and picked him up, and when I asked the teacher how he was doing, she always told me he was doing fine, and that “we just need to give him a little more time”.

But things didn’t stay “fine”. Slowly, but surely, Daniel started to retreat. His meltdowns became more regular, and he spent most of his time frustrated, angry, or sad. By February, after 5 months in the classroom, he still hadn’t acknowledged his teacher to her face. When I dropped him off at school, I’d wait and watch until circle time, hoping and praying that it would the day that he’d participate. Instead, I saw him literally curl up into a ball (“turtling” I called it), with his hands over his ears, and his face in the carpet, day after day.

Worse still, he would come home and disappear off to a bedroom or the couch, or the basement, find a blanket to hide under, and stay there until we came to get him. When he started to seek out blankets to hide under after he got dressed in the morning too, I think I hit rock bottom.

Around that time, the teachers started to talk to me. We needed to think about next year, they said. Daniel was unable to leave the classroom for gym or music or anything else without going into a full-blown meltdown that required a one-on-one staff member to manage, they explained. He got angry with the other children easily and they didn’t know how to help him with that, they told me. There was no way he could cope in the mainstream grade 1 classroom, and it was best that we start thinking about how to get him a spot in the Intensive Support Program for Autism.

That’s when I got desperate in a whole new way. 

I went from having a child who was generally happy, to one who was shutting down and even losing skills. He was increasingly unable to answer questions, and would regularly look at me with a look of desperation in those big round eyes and literally say, “Mummy, my brain won’t work.” His skin was pale and he had dark circles under his eyes, and he regularly told me (and his teachers) that he was “sooooo tired” before collapsing on the carpet.

It broke my heart in a way that I can’t explain. It also made me think, more than ever, that there was something physical going on. I decided I needed to regroup and try to consider if there was anything, anything at all, that we hadn’t tried yet.

Within three weeks, three things happened that changed everything. A friend at school approached me and asked if I’d ever considered a gluten-free diet for Daniel. She had gone gluten-free and had read some research about it having a positive affect on kids on the spectrum. I told her I’d done the research on it, and the current thinking in medical circles was that there wasn’t enough evidence to support it as a treatment approach except in cases where there was obvious gastrointestinal concerns (despite substantial anecdotal reports from parents who saw positive results).

A week later, my sister embarked on a complete (herculean) “cleanse” – eliminating everything from gluten to dairy to even fruit – to help my nephew who had been struggling for over 10 weeks from e-Coli type symptoms. It was inspiring, to say the least.

Finally, Daniel’s teacher mentioned to me that she once had a child in her class who was similar to Daniel, who went on a gluten free diet, and saw dramatic improvements.

Despite my serious skepticism (I honestly felt like the whole gluten free thing for non-celiacs was another cabbage-soup, Atkins-style diet trend with little to back it up) I decided that I couldn’t live with myself if I didn’t at least give it a try.

I literally went that night to the health food store and started to stock up on gluten free foods. Honestly, I had no idea how I could possibly remove gluten from the diet of a child who spent his life eating bread, buns, pancakes, and plain wheat pasta (and very little else), but I was determined to give it a shot.

Within 48 hours of removing gluten from his diet, there was a noticeable change. Daniel wasn’t hiding under blankets anymore. He wasn’t crying. He seemed more patient. Both Andrew and I noticed the change, but we honestly thought it must be coincidence. He must be having a random good day. There was no possible way that changing his diet could seriously have that big an impact, that quickly.

Except the next day was good too. And the next day. In fact, the good days just kept coming. And getting even better. He started talking more. He started to tell me about the friends he was making at school. And he started approaching his teacher, every, single morning, to say hello and tell her something new. It all felt a bit like I was in a dream, waiting to wake up.

Three weeks after starting the diet, we had Daniel’s one-year post-diagnosis assessment with the developmental pediatrician. When we arrived, we told her about the change in diet, and the change in Daniel, and she smiled and nodded and basically told us that in the vast majority of cases, there was little evidence that it did much to help. Ninety minutes later, after assessing Daniel, she literally said, “I have to tell you, if I saw him for the first time today, I don’t think I would have given him a diagnosis.”

I cried in her office, again. This time they were the good kind of tears.

It will be eight weeks this Thursday since we made the change in his diet, and I’m just now ready to share it with the world. It still feels too scary, too dramatic a change, too quickly, to be real, and I have been petrified to “jinx it”. It’s kind of like when you’re driving in bad weather and you hit black ice, and you’re completely out of control of the car…and then suddenly your wheels grip again -and  there is this feeling of overwhelming relief, yet you’re still filled with fear and apprehension that you might hit another patch.

And yet, every day, literally, I pick him up from school, and without fail, he’s playing with the other children. And he’s SO HAPPY. And then, day, after day, he tells me again, “Mummy, guess what? I had ANOTHER good day today!”. And when I tell him he can’t have the bun on the burger because it makes it hard for his brain to think, he hands it over to me without a question.

He understands too.

Even more than that, we’ve started to have conversations. Real, full-blown, back-and-forth conversations, about the most random things. You have no idea how magical that is.

His teacher (along with other school staff) have decided that he should enter the mainstream grade 1 class with his peers next year, and we’ll see how things go from there. It’s also worth mentioning that 4 teachers, including the principal, were so inspired by the dramatic change in Daniel that they’ve all started removing gluten from their diets ;). I only mention this because it sort of validates just how dramatic this whole thing has been.

With all that said, I need to be clear – I have no doubt that Daniel is autistic. His language is still delayed. His has gross motor delays and struggles with receptive language. If you watch closely, you’ll see that in general, he absorbs and communicates with the world in a way that is not “neurotypical”.  That different way of seeing the world brings a unique set of challenges, but it also brings a lot of unexpected gifts.

I also have no doubt that there will be many more bumps in the road ahead, and maybe even the odd stretch of black ice when we’re not expecting it – but it’s nothing that he (or I) can’t handle. And I’m just grateful that we have a label that helps give us all a bit of a roadmap as we embark on this journey together.

Finally, I know that my kind, sweet, smart, funny, cuddly, awesome little man will continue to bloom, so far beyond my expectations. This IS the happy story I wanted to read on those sleepless nights. And Daniel has proven that yes, everything is going to be OK…not just OK, but amazing.

Bring on the Spring showers. I am so ready to watch him keep blooming.

 

 

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I waited and waited and waited to write this post. In fact, I wrote it numerous times, with different words, and deleted it every time.

My darling husband gave me the go-ahead to write,  but he wanted me to be 100% aware of what I was doing. I can’t take this one back….arguably, once it’s on the internet, it’s permanent, and he (and I) wanted to be very sure that I was sure that I was doing the right thing for Daniel, knowing that he isn’t in a position to have a say in this decision. I can assure you that this responsibility weighed heavily on me (for literally months).

In fact, for  a long time, I thought I just wouldn’t post here again, because I couldn’t continue to write honestly without telling this part of the story. But the more time passed, the more I knew what I needed to do – not just for me, but for him. So here it is.

I would like to introduce you to my amazing, incredible, loving, affectionate, sweet, chatty, social, adorable, smart, giggly…autistic son. And yes, those pronouns all go together. And yes, your image of autism is probably at odds with that description. And that’s why I’m telling you this, and hoping, that in some  small way, I can help increase understanding and eliminate any sense of fear or shame or preconceived notions around that word.

Because I never, ever want my son to feel that there is something about him that he should be afraid to talk about.

For that to happen, I need the rest of the world to stop projecting that fear, become more aware, and most importantly, to become more accepting, of those on the spectrum.  And I believe the only way to do that is by helping people to understand.

Plus, I need to scream out to the heavens how incredibly, unbelievably, passionately proud I am to be his mother – for very good reason.

But back to the understanding part…I think the easiest way to help you understand is by introducing you to Daniel. So if you haven’t had the privilege of meeting him, this is how you’ll know him….

  • Look for the 5 year old with big round hazel eyes and a deep, infectious laugh who is telling the lady in the checkout line all about what we’re buying that day and where we’re going next.
  • If other children show up at the playground (or anywhere else), he’ll be the one hollering, “Mommy! Look! I see kids! Hi kids!!” which will likely be followed by random introductions, “Hi friends, these are my Mommy, Daddy, and my Charly”. If your eyes are watering because it’s so heartbreakingly adorable and unaffected and innocent and authentic, then you’ll know it’s him.
  • When you’re at the theatre, if you hear a laugh during the funny parts that rises above the rest – louder and longer, and entirely infectious – that’s him.
  • If you happen to be in my house at 7am sharp, look for the little guy climbing up the stairs and into my bed, melting into my arms and cuddling silently for exactly 10 minutes before saying good morning and requesting a pancake  (I so often wish I could press pause at 7:05 am…those are absolutely the most perfect 10 minutes of my day, everyday, without fail).

There are lots of other times that aren’t so easy – especially when the world gets a little too loud, or fast, or there are too many words and questions (questions are particularly hard)…or when things are unexpected…those times are tough for Daniel, and I don’t want to diminish the challenges. There is a reason why  3 different doctors agreed on the diagnosis, and why he works (so hard) with his amazing teachers and therapists every day to help learn new ways to cope with – and overcome – those challenges.

So now you know a bit more about my Daniel, who happens to have autism (among other traits)… the most authentic, gorgeous little soul you’ll ever meet. And hopefully you are a little closer to understanding that just because someone communicates and processes the world differently from what is “typical”, it certainly doesn’t make them any less intelligent, or important, or capable, or loveable than the next guy. In fact, in many cases, it’s quite the opposite.

And now for the apology. And this part is for Daniel.

I am so, so, so, sorry that I spent so many years wishing away this thing called autism. I am so so sorry that I didn’t understand that the things that would make you so beautiful might also include you seeing and interacting with the world a little differently from me. And I’m so, so sorry that I let a word – just a word – drive so much fear into me that I was unable to see that it might actually be helpful to you, my darling boy and the littlest love of my life.

So today, as you turn five, I want to celebrate your amazing, gorgeously authentic, beautiful self, and I want to tell the world how lucky we are to have you, exactly the way you are. I know you have so much to teach me and the world, and I also know you’ll continue to show us all how little we really know.

Happy, happy, birthday my brilliant boy.

**I need to caveat this post by saying that there is a vast spectrum of traits and behaviors that fall under the term Autism Spectrum Diagnosis (ASD), and I  speak only as a mother of a one child who happens to be at the “high functioning” end of that spectrum.  I realize that our experience is vastly different from many other families with ASD. I also believe that in a world where approximately 2/100 kids will receive a diagnosis, it’s important for there to be a greater degree of understanding of the large number of children like Daniel that don’t fit the typical media stereotypes of severely affected, rainman savant, or Aspergers genius (none of which describe D at all). As they say, if you’ve met one child with autism, you’ve met ONE child with autism . (with thanks to Deceivingly Normal for explaining it so much better than I ever could).

I’ve been planning to write this for a while. In fact, I was sure I’d post an update over the holidays – but something kept holding me back. Now I know why.

Today was hard. Like seriously, crush and pulverize your heart into 1000 tiny little dusty pieces hard. And so today, I’m writing – partly for me (because that’s what I do when I feel like this), partly for my friends, but mostly for all those parents who stumble here and keep reading and write to me and ask me how Daniel is doing (especially both of you who wrote me last week).

So our “number” finally came up for a 2-hr assessment with the developmental pediatrician today (the one we don’t have to pay for, for once), and I went in with great hopes – with good reason.

Daniel has been awesome – I mean just AWESOME – over the holidays. From the moment that he sang his heart out at the JK/SK holiday concert, with a huge (seriously, HUGE) grin on his face, to his insistence on building a “Frosty” in the backyard, and his absolute GLEE at seeing a stocking full of toys…it’s been pure, absolute bliss. It was really the first year he “understood” Christmas, and it was like combining age 2, 3, and 4 into one oversized explosion of happiness for all of us.

As I watched him over the school break playing with his sister – acting out elaborate scenes between the mommy dinosaur, the baby dinosaurs, and the ‘mean dinosaurs’ and hearing him cry out, “No, please don’t eat the baby dinosaurs !!” – I felt increasing confidence that, despite his atypical development, Daniel was making the kind of progress that would put him on a path that would allow him to ultimately catch up with his peers.

Beyond all that, Daniel’s been working with an amazing Occupational Therapist who we hired to work with him at school once a week, and his progress has been incredible. He literally went from being unable to copy a circle and a line in August two being able to copy all the letters of the alphabet and even full sentences in December.

So today, when we walked in to meet this new doctor, I’ll admit that deep down, in that irrational part of my mind (or is it my heart?), I was secretly hoping she’d send us on our way  saying, “You have nothing to worry about!”.

Clearly, that isn’t what happened.

Instead, I heard a doctor say the word that I’ve been dreading in reference to Daniel – the “a” word – the one that goes straight to your throat and makes it hard to swallow. And I gasped a bit and bit my tongue and told myself not to burst into tears in the office because God FORBID Daniel should think he made me cry. And so we kept on talking and I held it together as we worked out next steps and discussed all the things you do in the Doctor’s office when things aren’t quite right.

Here’s the funny thing. It was just a word. Nothing, but nothing, about my bright, loving, intelligent and quirky-funny-in-a-good-way kid had changed. It was just a label (and not even one that has been made “official” – we have more assessments to go through before anything is considered final). Yet that word – that label – holds SO MUCH POWER. It has the power to drop me to my knees, certainly, but far, far more importantly, it has the power to make people decide (without knowing anything about HIM), what he is capable of. At the same time, that word has the power to get him access to equally important services that could make an enormous difference to his future.

I’ve wanted to write about labels for a long time. In fact, I’ve started three separate posts that I never finished on the topic until now. I know there are people out there who question my writing so publicly, and they will now question me openly sharing the possibility of giving Daniel the label Autism (there. I wrote it.). I guess my struggle with labels has never been so intense or relevant as it is today, and that’s why I’m finally addressing it.

I don’t know where we will land in terms of a label for Daniel. The doctor who saw him today was clear that his cognitive skills are strong, as is his spacial awareness (in layman’s terms, his IQ is at or above average, which we’ve heard before). She was also clear that she sees him as being at the “very high functioning” end of the spectrum (if that label/Dx is to be applied following a more complete assessment – aka ADOS 2).

What I do know is that as a parent, the tug of war between protecting a child from preconceived notions associated with a label – and providing them with access to the best care that may be provided by that same label –  is incredibly challenging, and should not be underestimated, especially by someone who has not faced that struggle themselves. I also know that no label will ever, ever, define my child, regardless of how we may choose to apply it (or not).

Daniel 2012 Xmas ConcertFinally, I know that wherever we land on all that ugh-stuff…I know that the kid that comes running up to me with wild abandon screaming “Mommmmmmy” when I pick him up, and who can count to 200, and who loves dinosaurs and trains and cheese pasta and apples…and who sings a ridiculously adorable Frosty the Snowman….well, that kid should not be underestimated. I stand by my word – and I continue to write  here- because as I’ve said before, I promise you, he will exceed all of our expectations.

daniel

As I was talking with my mom the other day about Daniel and his progress, and about how proud I am of him, she brought up my blog (and the fact that I hadn’t written for a very long time).  I responded with my standard “work has been so busy since I went to five days a week in January, I just don’t find I have the time anymore” (which is true). But honestly, that’s not the whole story; in fact, I have started “update” posts a number of times over the past couple of months, but somehow, I just wasn’t ready to press the publish button.

I think that deep down, I was waiting, and hoping that the day would come when there would be a single, definitive thing that I could point to and say, “See? I told you! I told you he’s just going to be a late bloomer!”  But the thing is – it doesn’t work like that. You don’t just wake up and suddenly – poof – everything is great, and perfect, and all “fixed” now!

As much as I hoped and prayed for that “perfect ending”, I realize now  that just because it doesn’t work that way doesn’t mean its not still awesome – and i really do mean AWE some  – in its own way. In fact, I think in many ways, it’s so much better this way.

I (along with family, friends, teachers and therapists) have spent the last five months watching Daniel experience one little breakthrough followed by another.  And when you add all of those up, the result is pretty impressive.

Every time he takes one of these tiny steps forward, I get a jolt of giddiness, and I swear it feels like I want to explode each and every time. Like the way he will say “that’s right mommy!” when I correctly I interpret what he’s trying to say (seriously, my heart skips every time, without fail). Or when I arrive to pick him up at school and look out the window to see him playing with the other kids, happy and engaged, and clearly participating as part of the group. Or the time a few weeks ago when he was invited to a birthday party and the mother of the birthday girl told me that she kept asking if her friend Daniel was coming….

Honestly, I have almost daily moments ranging from happiness to tears of joy (I really need to get a handle on that) as I watch Daniel break out of his little shell and start to really connect- and understand – the people and world around him.  Seriously though, how many people get to feel that kind if elation on a regular basis? It truly is a gift.

With all that said,  I know that each accomplishment is celebrated with such intensity because there are still a lot of questions about where we will “land”.  Daniel still has enormous difficulty with language (both receptive and expressive), his fine motor skills are very delayed, and his is a very long way from being “caught up” with his peers. By the same token, his improvement is undeniable…all of which leaves us in a situation where no one can predict what kind of outcomes we can expect (that sounds so clinical – seriously, who knows “what kind of outcomes to expect” from any child??).

What we do know is that Daniel once again completed the 4-hour ADOS assessment for autism spectrum without a diagnosis (*happy dance*), and that his “cognitive functioning” was found to be at or above age level (*even happier dance*).  However, we also know that he has a severe language disorder, and that he continues to show markers/red flags that put him at a high risk for ongoing learning disabilities and possibly a future diagnosis on the spectrum. So, we remain committed to providing him with therapy (right now that includes speech therapy & play therapy, and OT is next on the list for the Fall)  to support him in meeting his potential – which I know is enormous.

The good news is that we are in a daycare that is full of teachers who are loving and caring and have embraced Daniel and all of his unique awesomeness. He will enter the junior kindergarten class there in September and I know he is in the best possible place, and I’m confident that he will continue to thrive in that environment.

I also take some comfort in knowing that as the other children improve their understanding of upper case, lower case, sounding out letters, counting to 20, colors and shapes in JK…well, Daniel mastered all that months and in some cases years ago, which will hopefully give him the opportunity to catch up in areas that have not come so easily (like speaking, understanding conversational language, fine motor skills for writing and drawing, etc…). There’s no doubt that he has strengths that I believe will help him compensate for the challenges. Notably, his ability to memorize will likely come in handy at school – one of his therapists mentioned to me that during a game the other day, he  memorized his “grocery list” card – he didn’t look back once at his “list” and correctly identified the items he needed to complete it from memory (now if only I could learn to do that…).

So, life is good. And Daniel is, without question, GREAT. We (or more specifically, I) have learned to stop living on eggshells, and for the most part, I have consciously stopped measuring  Daniel against his peers (which is a totally unproductive, negative habit), and instead remain focused on his achievements. I guess that’s a pretty good goal for any parent.

So where are we now? Today, my dearest little Daniel is a lovely, kind, polite child, with a smile that can melt hearts. Of course he has his moments and his meltdowns (what 4-yr old doesnt?), and he still needs a fair amount of routine in his life (this from the mother who heats her milk for exactly 22 seconds before adding coffee to the mug every morning at work).

But overall, Daniel is a HAPPY kid who is learning new things every day, and who cares deeply about the people around him. And that is really all I ever wanted for him.

I realized the other day that I’ve been writing on this blog since 2010. Since it’s now 2012, I’m officially in my second year of blogging *gasp*.  From my perspective, that’s a pretty long time to stick to something like this on a reasonably (aka at least once a month) regular basis.  And then it struck me how much I really love writing here, and how much I want to continue doing this…but (there’s always a but)….

Looking back, and reading my posts, it’s really kind of sad…they’re all so deep, and heavy, and full of angst. Now, to be fair, they are all also incredibly honest. I spoke from the truest place in my heart and last year was a genuinely tough year (to put it mildly).  For me, each and every one of those posts was like having a huge, enormous, blabbering cry, and it was rewarded with all of these amazing, loving and caring virtual hugs. So it was raw and cathartic and therapeutic all at the same time – and it went a long way in carrying me through the toughest moments.

But the time has come to stop being so damn SAD all the time.

So this post is about a commitment that I’m making to myself – a commitment to looking forward, and to seeking out the bright moments, and recording them as diligently as I have recorded the tough times.  I will continue to update on our progress here, but I have resolved that 2012 will be a year with more happy posts than sad ones. I am, in effect, turning over a new leaf.

Part of this is driven by the fact that I am acutely aware that anything that goes online has the potential to live on through eternity, and if my children ever have the chance to look back and read this online diary, I want them to have the complete, balanced picture. I want them to know there were many, many, many good times as well as some tough ones, but we got through them all.

But the other driving force is the fact that I’m facing  a new reality with a new perspective. The reality is, Daniel is improving and he’s starting to talk and seek out social opportunities; while the challenges are not gone (severe echolalia, behavioral issues, sensory processing concerns and serious receptive & expressive language delays), they feel manageable in a way they didn’t before.

The perspective is, well, it’s just that – perspective. After over a year of living in what amounted to a continual state of low-level panic, I’ve come down from the ledge and reached a place of peace. It’s not that I think that “this is all going to go away”, it’s that I’ve realized that it’s going to be OK, regardless of where we land. And with that perspective comes an ability to stop and smell the flowers, enjoy the good moments, and stop worrying about what it all means.

So enough of that, and back to my resolution to be more positive. I’ll start with this.

Today, I was awoken by the most awesome thing…Daniel, standing at the side of my bed,  with a big grin, saying “Hi Mommy!”. When I responded with an equally effusive, “Hi Daniel, good morning!”,  he responded, in the most natural way, “Goo mawnin!” And I did what any mom would do – I grabbed him and hugged him and squeezed him tight and said, “Oh Daniel, I love you”. And as if all that wasn’t good enough for one morning, he responded with a “Wuv u do,” looking right in my eyes, with a goofy grin. In our world, that counts as a full-blown conversation – and that’s huge.

I think this may be one resolution that will be easy to keep.

As usual, I’ve been reading…and reading…and reading about the many (possible) challenges we’re facing with Daniel (autism spectrum, apraxia, echolalia, speech delay, specific language impairment….etc.etc.etc)…and for once, something seems to be appearing again and again that is resonating with me. Specifically, I keep seeing references to studies about Omega 3 and other essential fatty acids, and their effect on children with speech delay. It’s not just speech delays that are referenced – ADHD and other neurodevelopmental disorders seem (in studies) to often respond positively to Omega 3 supplements (see below for some studies – I’ll add more when I get organized).

Beyond the studies, in the feedback I’ve read from parents who have given their kids Omega supplements, I consistently see references to increased attention, decreased frustration, and overall better mood/attitude. In many cases, the response was seen very, very fast (almost immediately).  This is incredibly important because for kids like Daniel to really respond to/benefit from treatment like speech therapy, they must first have the patience to sit, listen, and participate in back-and-forth communication.

As the daughter of a pediatrician, I tend to rely on traditional medicine (and remain skeptical about homeopathic medicine). As a result, supplements are not a natural “go-to” reaction for me. However, I also believe that traditional medicine doesn’t have all the answers, and I believe that there are some simple, natural supplements that could be very beneficial that may be overlooked/underestimated by our pharma-driven medical world.

With that in mind, we’ve started on our own little fishy trial. The stuff (we’re using Nordic Naturals) tastes vile…and cannot be hidden in any food without making the food taste equally vile. So, I will continue to torture my little boy to get the rancid stuff down his throat with a medicine dropper, and hope that the chocolate chip cookie afterwards takes away some of the pain.

We’re four days in…and as crazy as it sounds, I swear I hear a difference – Daniel sounds clearer, seems to be saying more words (in a more advanced way), and is far more readily trying to repeat my words to improve his pronunciation. I realize that it’s impossible to draw any conclusions (you never know when a “growth spurt” is coming and this could be – in fact likely is – a complete coincidence); but when I mentioned it to my darling husband, he agreed. Even more powerful, this morning, Charlotte (who knew nothing of the new fishy regimen or what it was for) cried out to me, “Mommy, guess what? I can understand now what Daniel is saying to me!”

Placebo? I wonder….

“Biological Psychiatry”; Omega-3 Fatty Acids Supplementation in Children With Autism: A Double-Blind Randomized, Placebo-Controlled Pilot Study; G.P. Amminger, et al.; February 2007

“Omega-3 fatty acids in ADHD and related neurodevelopmental disorders.”


“Listen to the mustn’ts, child. Listen to the don’ts. Listen to the shouldn’ts, the impossibles, the won’ts. Listen to the never haves, then listen close to me… Anything can happen, child. Anything can be.”

– Shel Silverstein

I saw this quote and I thought it was so beautiful, I wanted to share it.  This year has been long – probably the longest of my life – and marked by many long, dark days and nights. Days where I’m running low on hope and high on frustration with Daniel, where it’s hard to remember the good times, and even harder to believe they are going to get better. Days where all I can hear is the mustn’ts, the don’ts, the impossibles and the won’ts.

But as the year comes to a close, we have so much to look back on and be thankful for – and many, many reasons to continue believing that anything can – and will – happen. Anything CAN be.

For some, my optimism may seem odd. After all, Daniel is still not talking to any real extent, and communication overall remains a big challenge. However, he will now ask, when prompted, for what he wants, in his very stilted (and pretty adorable, remarkably polite) way….”I..waaaanT Waaan Apple. peese”. (Always “one” , and almost always “please”). Language continues to be our biggest barrier – and it’s a pretty huge one.  But we also continue to make improvements there, and for the most part, Daniel is able to “tell us” what he wants and needs, through a combination of pointing and 1-2 word expressions, which makes life much easier on everyone.

As his expressive language (a.k.a. talking) has slowly improved, his receptive language (a.k.a. understanding) has also grown, but still remains extremely delayed. I actually find this the hardest part; not because he doesn’t understand me…but because he doesn’t understand the world around him. While we (Andrew, Charlotte and I) have learned to speak in a way that he will understand, the rest of the world continues to expect so much more of him.

He is still a very tall kid (97th percentile), and that doesn’t help the situation. So often, I see people shake their heads, or roll their eyes, or show some other overt sign of disapproval as Daniel either doesn’t respond to questions, or acts out in way that seems inappropriate for his age and size. While my own skin grows thicker each day, I admit that I still routinely go home and bury my head in a pillow to hide the tears after seeing someone look at us with that look of disgust, and I just pray that Daniel doesn’t see and understand what I see. There have been many,many days that I have been tempted to just go ahead and put a sign on my forehead saying “yes, my child is developmentally delayed and may not meet your “expectations” for appropriate behaviour”. Other days, I’ve wanted to write a similar sign saying “Before you judge my child, go F-*&% yourself”.

But with all that said, the truth is, as the year comes to a close I am overwhelmed with pride, for both my children. Charlotte has proven herself to be the most incredibly loving, and supportive, and PATIENT sister, that Daniel could ever have asked for. She is his little rock – she keeps him grounded in a way no one else can. She also somehow manages to exceed expectations on virtually every front (she’s a pretty outstanding little girl, in my highly biased opinion), and I remain eternally grateful that we were blessed with her as she continues plays a huge role in helping us in our journey with Daniel.

Daniel has also made enormous gains. Most notably – and the thing that keeps me going on the rough days – is the way that he has learned to connect with other children. While his close adult relationships remain limited to those in his “inner circle” (Andrew, me, his teachers and to a lesser extent extended family), he clearly and overtly craves interaction with other children, well beyond just his sister (whom he clearly and absolutely adores). Daniel has developed strong bonds with his cousins, and he is the first to run up to other (random) children at the park and holler, “Hi Guys!!” (in a totally uninhibited, super excited and ridiculously adorable way).

He also shows incredible empathy towards other children – another hugely positive sign – and is the first to go over and console someone who has been hurt. I don’t know if it’s good or bad – but Daniel remains anything but a “textbook case”.

While it’s clear that he struggles with severe developmental delays, he also continues to learn and grow to some degree cognitively (he can now count items up to 20, spells out random words “C-A-T…cat”, occasionally sounds out words, and repeats math expressions – 2 plus 2 equals 4! 3 plus 3 equals 6!). While I believe most of that is just memorization, it is still strange coming from a child who is so delayed; and I also believe it’s a good sign for his future.

He’s also so incredibly loving – he absolutely craves physical hugs, love, and “cuddles” as he calls them. His (AMAZING) teachers routinely comment on how affectionate he is, and tell me that they cannot resist his requests for cuddles, any more than I can.

All of this adds up to a huge question mark – there are still no doctors or therapists willing to openly guess on his prognosis – and it means we just have to keep moving forward, trusting our gut that we’re doing the right thing and providing him with the right supports. It also means that the door for hope has been left wide open – and I have my foot  stuck out, firmly keeping it propped in that position.

It’s funny – as the year comes to a close, we are so far from where I “imagined/hoped” we’d be, and yet, I am so at peace. Just think – a year ago, Daniel had never said “Mama” – now, he won’t stop saying it.  A year ago, he sat in the corner and played entirely on his own, with no “imaginative, pretend play” – now, he loves nothing more than to play hide and seek with his sister (even if that entails hiding in one place only).  A year ago, I questioned whether he would ever really interact with others – today, he has “friends” at school who will run up to him when he arrives and say, “come on Daniel, let’s play chase!”.

At the end of the day, I am so blessed to have Daniel as my son, and I know that there is truth to the statement, “God gave you this child for a reason.” We continue to learn and grow together – and I’m certainly a better person for having him in my life. As I have said many times before, that little boy of mine will continue to defy the odds, and surprise everyone, including me. You just wait and see.

Happy New Year.