Watching Daniel Bloom

Anything can happen, child. Anything can be.

Posted on: December 28, 2011


“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.

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3 Responses to "Anything can happen, child. Anything can be."

What a wonderful update. I am so glad for you that Daniel (your beautiful boy) continues to gown and move forward. And that you can see and rejoice with his progress. Hats off to you and your family for keeping positive and finding joy in all of Daniels steps forward.
Best wishes for 2012.

You’re a wonderful parent. God bless.

Thank you so much Lisa! What a lovely thing to read out of nowhere. 🙂 All the best.

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