Watching Daniel Bloom

This Autism Story Has A Happy Ending

Posted on: April 27, 2014

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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6 Responses to "This Autism Story Has A Happy Ending"

Tears are streaming down my face right now. First, thank you for the email (i’ll respond to that too.). Second, I finished your post and then saw the video from Daniel’s birthday. I can’t stop crying. I love him! I want that for Cooper so badly. Daniel gives me so much hope. I honestly think I am struggling more with my grieving than the diagnosis (lack there of) itself. I just want and pray and hope that Cooper can have a normal life. And it scares me so badly. Thank you so much friend! I love!

Thank you so much! Nothing means more to me than knowing that other parents can get something positive from Daniel’s story. I’m rooting for Cooper (and you!!) and if you ever need anything, you know where to find me. The grieving part is hard, but I think a necessary part of the whole process. You will come out the other side, I promise. xoxo

Hi, I stumbled into your blog.

How is Daniel now?

Hi Julia…I have been thinking about doing a New Years update – then I saw your comment :). I will write a more extensive update, but I thought I’d respond directly to let you know that Daniel is fantastic. He continues to exceed every expectation – he is doing well in school, he has a lovely group of friends, and his language is slowly but surely getting to the point where you don’t really notice a difference between him and his peers. Meltdowns are almost non existent, he accommodates change extremely well, and his patience is remarkable. There are still things I see in him that could be considered “spectrumy”, and I’m grateful for the insight that label provides, but to the outside observer, those things would be difficult to identify. I have stopped worrying about autism as a disability, and I have come to understand it as a different way of learning and perceiving the world. I don’t know if Daniel will always relate to the label – he is not yet aware of it and his progress makes me question whether he would “measure on the spectrum” if he were tested today. Having said that, I believe it has done us far more good than harm up to this point, and I feel like he is the kid he is today partly because of the therapy and accommodations that the label allowed us to provide.

Hi, it’s Julia again.

Thank you for taking time to write. I look forward to your update on Daniel in your coming post, if you do blog again.

I have a boy who has just been diagnosed with PDD-NOS a few months ago. It is shocking and I’m still in a ‘grieving’ period I guess.. While searching for ‘answers’, I reached your site.

By now after I’ve read several parents’ claim, I’m aware that not all kids manage to thrive or really do so much better to ‘look normal’, and it is not something that’s really on my mind for the time being. His speech is what worries me the most at the present.

All I want to say is I am so glad, SO SO GLAD that Daniel, your beautiful boy is blooming and your love has found him a happy ending. You’ve done so well, mama! I’m hoping that my love and effort for him pay off someday too…

Hope to talk again if it’s not too much to ask.

Julia – I’m going to email you directly. You can always, always reach out to me personally.

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