Watching Daniel Bloom

Today, after a long hiatus, I felt like writing again – in part because this blog has become a great way for me to keep a lot of close friends in the loop, and in part because I continue to find great solace through my writing.

In so many ways, a lot has changed since my last post, and yet in other ways, so much has stayed the same. The great news is that Daniel continues to make progress, specifically in some areas that I think may be the most crucial to his future.  At the same time, new “issues” have popped up, and as each day passes, the likelihood of Daniel just “growing out of all this” becomes less likely. I continue to have a very, very hard time thinking about that, and I also continue to have enormous faith in the fact that my kid will be the one to defy the odds.

Despite that, as time passes, I’m growing increasingly comfortable with the idea of Daniel being “the kid in the class with special needs”, and with me  being “the mother of the kid with special needs”.  If that’s not brutally honest, I don’t know what is. It’s also incredibly liberating to say out loud.

That became clear to me on a recent school trip when I was (once again) feeling stressed that other parents would question my parenting and (more importantly) criticize Daniel for not following rules or behaving in the “expected” manner. In a moment of self-preservation and an attempt at explanation, I found myself saying to another mother, ”that’s my son – Daniel – he has developmental delays.”

Saying it out loud left me nauseous, overwhelmed,  and relieved at the same time. But the response I got made it all worthwhile.

“Oh, really? Daniel has always stood out to me. He has such kindness in his eyes. I used to spend a lot of time in the classroom and Daniel has always seemed like such a calm and caring soul.”

My child, the same child who faced a parent petitioning for his expulsion from the school due to his “violent nature and biting,” just 2 months previous, was now being described as a calm and caring soul. (and no, I never wrote about the former situation because it was, quite frankly, too painful at the time)

I’m sharing this because it speaks so clearly to how different people can look at the same child, and yet see a totally different person.

I know that the child I see today is an amazingly loving, caring person. He has the deepest, funniest belly laugh I’ve ever heard, and when he knows you, and trusts you, he can look more deeply into your eyes – and into your soul – than anyone I know. He understands more than anyone gives credit for, and he’s smarter than any of us realize. He is moving forward every day in a way that continues to make me proud, and he is going to prove the world wrong.

Luckily for me, I have a whole team of people behind Daniel, supporting him and believing in him just like I do. I call them my “Team Daniel”, and I am so thankful for every one of them (Janet, Julie, Seana, Grethel, Susy, Kelly, Lisa, Laura, Maria, Vita…I’m sure I’m forgetting some but you know who you are). The phrase, “It takes a village” has never been more true.

We continue to push forward together. It’s not always easy, but it’s certainly worth it. Just last week, when I dropped Daniel off at school, another child walked up to him, took his hand, and said, “Daniel, come on, let’s play.” And Daniel, with a huge smile on his face, ran off after him.

It was the first time I ever saw a real “friend” engage with Daniel, and him engage back.  And I cried all the way to work, happy tears. Like I said, we continue to move forward.

I haven’t posted in a while – largely because I decided that we all needed a break from that subtle, but powerful, ongoing stress that had become such a constant part of our daily existence.

It’s a bit like water torture, really. I truly think that worrying about your children is the most painful, insidious way possible to break a person down. And I needed to shut it all down for a while, for everyone’s sake.

A big part of that break involved me stopping my nightly computer time – researching and writing – thinking and rethinking – about what is going on with Daniel. Not only that, but my work has been very busy and it’s required a lot of my attention. So I’ve enjoyed the break from my personal stress, while at the same time jumping in to a bunch of other, work-related stress.

But today, I thought I’d post an update, because it’s been bothering me that I’ve left things hanging here.

The funny thing is, the fact that I was able to put the “Daniel things” aside for a while, and switch over to worrying about work, speaks volumes about how well he is doing. After all, over the last (almost) year, it didn’t feel like an option for me. I was so consumed with Daniel,  and his health, that there was no room to take on anything else “extra”.

So the fact that I’ve been able to  let go is huge.  And it’s been good for all of us. I can’t even tell you the peace I feel when I say that I finally, honestly and truly know and accept, that Daniel is going to do what he’s going to do – when he’s ready.  In the meantime, we are providing him with all the support (and therapy) we possibly can to give him every chance to succeed, and meet his potential. And that – along with my unending love and support – is as much as I can do for my precious little man.

Honestly, I know that nothing we’re doing is making any drastically life-changing difference – he’s going to be who and what he’s going to be – but I can’t help but wonder if he’s been waiting for me to finally relax and let go. Over the past few weeks, Daniel has continued to surprise me, making huge strides forward.It’s all relative – he remains nearly one year delayed in most milestones – but his progress is undeniable.

He moved up to the senior preschool class a week ago, and he continues to go to school each day with a smile on his face. They have adjusted the rules for him in some areas, but for the most part, he’s “keeping up” with the support of his amazing teachers. And he’s talking more and more each day.

I can’t always put my finger on it – it’s hard to explain the progress. But tonight, when I read, “Brown Bear, Brown Bear, What do you see?” with Daniel and his sister,  and I listened to him follow along, giggling and anticipating the next page, participating and trying to keep up with his older sister, while “repeating” the words in his own special way – looking to each of us for approval….well, that’s what I’m talking about. It occurred to me that this is what it feels like when most parents read to their two or three year old. And I felt so lucky to finally feel that.

Brown Bear, brown bear, what do you see? I see my little boy, finally, finally,  looking right at me.

Last week was big. Scrap that, I’m not going to minimize it. It was huge, actually. In fact, so much so, that it’s taken me some time to share with “my world” what’s happened, for a couple of reasons. First, because I needed time  to absorb it and second, because I was so desperately in need of a break.  The last nine months have been exhausting, and I needed so badly to be given permission to stop thinking, and worrying, and writing about Daniel –  just for a moment.

So the news….after an extensive assessment with an amazing developmental psychologist (who I am confident is as good as they get), we got the results last week.  I was absolutely convinced that she would reinforce what I thought- and what I saw in the faces (and in many cases explicitly heard in the words) of virtually every teacher, therapist, and doctor that interacted with Daniel in the past 6 – 9  months. In other words, I was convinced that I was going to get confirmation that Daniel was PDD-NOS (which is really just an autism spectrum diagnosis).

I nearly fell over when she said it. “I don’t believe he’s truly on the spectrum”.

WHAT?!?!? ARE YOU SERIOUS?!?!?

I know – and Andrew knows – and the doctor was clear – that none of this is cut-and-dry. And we have some very, very, very large (possibly huge) hurdles to cross. But this is nothing short of amazing news, and it reminds me that I wasn’t crazy in my hopes and my ongoing faith.

But that was the good news. There is also some not-so-great news, most of which was not a surprise.

The reality is that we have a laundry list of things to overcome – from severe expressive and receptive speech and language delays to fine and gross motor delays. We potentially have sensory processing issues to address and certainly delayed social communication . In short, we have our work cut out for us. But we have also been given a great deal more reason to hope.

We have the name of a therapist that will work with us in our home to help address Daniel’s challenges. We’re on a waitlist for the Bloorview-MacMillan occupational therapists to further assess Daniel in his daycare and start working on the gross and fine motor concerns, as well as some of the sensory stuff.  And we’re beginning to work with an amazing team of speech therapists in a two-child, two-therapist setting next week to work on everything from speech and language to social skills.

Even more encouraging, Daniel’s progress recently has nothing short of incredible. In three weeks, he’s literally gone from using his first 3-word sentence routinely (“I want ____”), to using 3-5 words on a regular basis to tell us what he wants (still hard to understand, but we’re getting there). Beyond that, his desire to interact with us has become insatiable – he simply won’t shut up (even if most of his words are incomprehensible). He hugs, kisses, and tells us he “u-vays” us (love you) more times in a day then I can count. It’s like he finally cracked open the shell that was keeping him locked inside.

I know we have a long way to go…and this is just the beginning.  But what an amazing beginning.  We will, absolutely, get there in the end. I always knew we would.

As Auntie Rachel always says, just listen to Dorie, and keep swimming, swimming, swimming my little fish.

Today, I just feel compelled to write about what a beautiful, bright, sunny day it is.  After what has felt like the longest, darkest winter ever, it finally feels like the sun is shining again – both literally and figuratively.

Two weeks ago, Daniel turned three. We had a quiet celebration with a couple close friends and their kids – a far cry from the 25 kids we invited to Charlotte’s third birthday a couple years ago, complete with over-the-top cake in a fancy rented indoor playground.

I didn’t talk about his birthday much – I didn’t even acknowledge it on Facebook, never mind writing about it here – and the truth is that it was a difficult milestone for me to face. For so long, I’ve heard the stories about the family members, friends, and friends of friends that “didn’t talk until they were three”. It seemed like everyone had a story that reinforced this, and every time I heard one of these stories it was like a little ray of light giving me permission to hope, even for just a moment, that maybe Daniel, too, would just start magically talking when he turned three.

So when his third birthday arrived, it was a bittersweet milestone. Not only did he not magically wake up speaking in sentences, but when I arrived at his school with an elaborate construction-themed cupcake-cake for snack time, he proceeded to scream, over and over, “No,No,No!!!!” as the class sang Happy Birthday, and then firmly refused to eat. That cake – with all its goopy frosting and bright yellow “diggers”, that I so carefully chose in the hopes that it would somehow, magically lead to a “normal” third birthday celebration with his friends – well, it didn’t make a bit of a difference. In fact, it did more harm than good.

As hard and upsetting as that was, the school “celebration” firmly reinforced my decision to have a small, quiet, simple party at home for his “real birthday party”. It also caused me to lower my expectations dramatically around how much he would actually enjoy that day. So when Sunday arrived, and the doorbell rang, it was such a great surprise to see him run to the door and greet his guests with a great big smile and a loud, “Hi!”, followed by a couple of excited laps around the living room. The next two hours were  great – Daniel had a fantastic time with his sister and the other four kids, and the whole “party” was just perfect. He even greeted his cake and the singing of Happy Birthday with appropriate excitement and some good attempts to blow out the candle.

For the past two weeks since that day, Daniel has been making great progress – so much so, that I almost feel like he somehow knows that he turned three, and he’s decided that “it’s time”. I swear that not a day has passed that he hasn’t shown me a new skill (or at least a new word). His mood has improved, and his willingness to accept changes in our routine is getting better and better.

That’s not to say that we haven’t had our bad moments (including some full-on doozy’s like the time when my mother was visiting and Daniel wouldn’t stop screaming or acknowledge anyone but me) – we certainly have. But the tough moments are shorter and less frequent, the happy times last longer, and I’m seeing that perfect little grin of his far more often. He’s even learned how to answer the question “What is your name?” with a smile and a confident, “Daniel!”.

It feels like just as the sun has finally arrived, and just as the flowers are finally starting to bloom, maybe, just maybe, my Daniel is too.

I’ve been feeling guilty recently, and wondering if we weren’t so focused on other possible diagnoses for the past 6 months, then maybe Daniel would have had access to therapy options earlier. Sadly, the reality is, it really wouldn’t have made a difference anyway. The truth is, we are on all the necessary waiting lists, and we really couldn’t have gotten on them any earlier than we did.

So I’m left sitting here with a sense of urgency about getting him appropriately assessed and into treatment, and the incredibly frustrating reality that our system does not share that sense of urgency in situations like ours. In fact, the only way to access therapy sooner would likely involve re-mortgaging our house, quite literally. And that is a frightening prospect, and a very, very bad sign for our community and our children.

So now I’m going to rant. Because one of the things this whole experience has made me is angry. Angry at a system that is convoluted and broken. Angry that some of the most vulnerable members of society are being left to sit on waitlists while precious time passes.  Angry that despite the fact that we have good jobs with comparatively good benefits and that we pay our taxes and do do our part and despite the fact that we’re well-educated and fairly well-connected and we have a lot of support/healthcare resources at our disposal…well, despite all that, we’re still feeling lost and we’re still sitting here, waiting, knowing that we have a lot more waiting ahead of us.

When we had kids, we accepted a certain responsibility – we knew that we would spend thousands of dollars a month on daycare, untold amounts of money on clothing and feeding our kids and putting them in extracurricular activities, and eventually, an enormous sum to put them through school. But we never counted on paying through the nose for healthcare.

Living in Toronto/Canada, we have the advantage of a publicly funded healthcare system that provides “free healthcare”.  It does not, however, seem to give us the right to adequate healthcare in a timely manner. 

There is one therapy (ABA/IBI) that is recognized as effective for kids on the spectrum, and it has some promising outcomes; howeer, the outcomes are significantly better in cases where therapy begins early (ie. well before age 4). Here’s the problem – the waitlists to get access to ABA/IBI in Ontario are easily 2-4 years + from start to finish, which means it’s basically impossible to get a child funded therapy during the crucial window that drives those really good outcomes.  So we’re talking about a wait-time that could be life-changing. And that breaks my heart.

What bothers me even more is the fact that I know that if we lived in Connecticut or California (among many other places), Daniel would have received a full assessment long ago, and if he was diagnosed on the spectrum,  he would likely already be getting 20 – 30 hours a week of therapy at a minimum. The reality is, literally a full year after sounding the first alarm bell, we’re still waiting for the publicly-funded assessment by a developmental pediatrician, and the wait is likely to be another 2-3 months before our “number comes up”. Even scarier? I happen to know that if our house was 2 blocks east, the wait would be an additional 8-9 months + (I know this because there was confusion around which list we got on due to our location on the border of two “areas”). Fortunately for us, in this case, we happen to be on the “right side of town”. Despite that, we don’t feel that we can afford to wait, so we will fork out for a (another) private assessment to shave a couple months off the waiting time.

Beyond that, we haven’t even got on the “real” waiting list (ie. the one for ABA/IBI, which, as I noted above, is the only recognized and effective therapy for spectrum disorders).  When you call the Centre that administers most of this care, they basically won’t tell you anything until you have a formal diagnosis/report in hand. In fact, they outright refuse to get into a discussion about waitlist times at all, saying only that that the wait is very long  (that’s verbatim what the woman said on the phone). It seems that the reality is that the wait is up to 2 years (based on research I’ve done).

As it happens, we’ve been fortunate enough to be in a position to “go private”, at least on a couple of things, and we will continue to go that route as long as we can. It may mean giving up vacations, and other “extras”, but that is a small price to pay if it will help Daniel meet his potential. We’re already doing weekly private speech therapy (at $125 a shot/ ~$550 monthly), with PT (physio) starting next week (also $125 a shot/ ~$550 monthly) and a full spectrum assessment (which will run us close to $2000) in a couple weeks from now (note – I’m only sharing these numbers to give a true sense of the situation, and to give some perspective).

In order to accommodate appointments, I am only working 4 days a week, with the 5th day dedicated to doctors and therapists. So to top it all off, we’re also taking a salary hit . If you do the math, giving Daniel the most basic level of therapy will cost us approximately $15,000 over the next year – and we’re only scratching the surface of what may be warranted.

This is already taking a financial toll, and I cannot imagine how we’re going to manage if we need to add 25 hours of IBI/ABA to the mix, plus weekly OT and PT (this kind of therapy is typically $30-50K annually, depending on the number of hours). We’ll figure it out, and we’ll find a way – but it will change our family’s situation dramatically and it will involve giving up a lot.

Everything from the house we buy next year to the camps and extracurricular activities that my older daughter will be able to enjoy will be impacted. It’s a very difficult prospect to come to terms with, but I just have to thank God that we will have the OPTION to make those sacrifices if they are warranted.

What scares me is that our family income is significantly more the “average” family income in this country.  I share this because I’m so distressed about the lack of services available for the children in our community. What on earth would we do if we were living on an “average” income? What are all those families and those children doing?  It’s a scary thought.

I just don’t get it – is it just me, or is there something very wrong and unfair about all of this?