Watching Daniel Bloom

If I could go back 9 months, I’d tell myself…(a.k.a. My advice for parents in similar shoes)

Posted on: June 14, 2011

Over the past year, I’ve learned a lot – about myself, about my family, and a whole lot about dealing with a child that is struggling to keep up. More than once during that time, I wished there was someone who could tell me – clearly and simply – what I should be doing next.

I needed a manual that I could follow – a “What to do if you live in Toronto and you think your child may have autism but you’re not really sure and maybe it’s something else – like it could be sleep apnea or nocturnal epilepsy – and maybe it’s PDD-NOS or sensory integration disorder…but then again maybe it’s nothing and he’ll just grow out of it…” guide.  That’s not too much to ask, is it?

Unfortunately, that guidebook doesn’t exist, and no single set of advice could have answered all my questions. Despite that, as I look back now, there are definitely things I know now that might have helped to hear early on. I’ve pulled together that list…a letter, of sorts, to myself, if I could go back in time.

So here it is, my own personal “guidebook”. Maybe one day someone else will be searching online for their own guidebook, and this will help, even just a little…

  1. Don’t let the fear of a diagnosis stop you from acting – now.
    The moment those  nagging fears start, pay attention to them. Look for good resources like the Nippissing and the M-CHAT, and do your own quick “assessment” of whether there is any truth to those fears. Be honest with yourself and if milestones are being missed, that’s when it’s time to reach out to your doctor and push to get on “the lists”.  The waiting lists are going to be long – much, much longer than you think. If your “number comes up” and you realize that you don’t need the assessment/therapy/support after all, it’s very easy to remove yourself from a list. It is IMPOSSIBLE to get a fast-pass and jump the queue if you decide to hold off and realize later that your fears were warranted.
  2. Listen to others, but don’t let people tell you there’s no reason to worry – you are his mother, and you do know best.
    People will inherently want to reassure you and make you feel better – they also won’t want to believe that there’s something wrong. They will say things like, “he’s a boy” or “he’s still so young” or “I knew someone who didn’t talk until they were 4 and now they’re the CEO”. While these things may be true, the fact is that for every child that’s “just a late talker”, there’s one that isn’t. Now is not the time to be rolling the dice that you land in the first category.
  3. Take regular notes 
    You think you will remember now exactly what he was doing a couple months ago, but you won’t.  So, at least once a month, take the time to write down a few brief notes about how he’s doing. Find a way that’s simple and convenient for you – whether that’s sending an email to yourself, writing in a notebook, or creating a file on your computer.It doesn’t require much – just ask yourself a few simple questions like, What did he learn this month? Is he in a bit of a plateau? Or has he excelled and made great gains? What challenges is is having? What appointments (if any) did he have?Some months you’ll only have a few sentences, others will verge on a novel. Just make sure you write somethingdown. You will, instinctively, know what is important, even if it’s an anecdote about a trip to the park.These notes will be an invaluable guide in the future, and they will serve a few critical roles. First, every doctor, nurse, and therapist will want to get a “history” from you. You will tell this story over, and over, and over again. Sometimes, your head will be spinning and you’ll be on the edge of tears as you try to come up with this “history”. Having a piece of paper to guide you through those appointments will help to ground you, while ensuring that you don’t forget something important.

    Secondly, they will provide a guidepost to show progression, stagnation, or regression – all of which are important to be aware of. Finally, they may, at times, give you that reassurance that you will constantly seek, and help you to see that you really are moving forward.

  4. Doctors are not always right – trust your judgement (and get a second opinion whenever you can)
    At times, Doctors can have tunnel-vision, particularly the specialists. That may lead to you dealing with two doctors who give completely contradictory advice. If you’re exploring a number of possible diagnoses, try not to let one come at the expense of another. Daniel has been a new child since his surgery for sleep apnea; if we had held off on addressing that until we got the results of a separate set of tests (as we were advised),  his surgery (and resulting progress) would have been delayed by 3-6 months. Those were 3-6 critical months that we couldn’t afford to lose.
  5. Prepare to project manage
    Sadly, there are no “general contractors” to manage all the doctors, therapists, agencies, and appointments that you will be “subcontracting” to. This means it’s your job. It’s tiresome, and it’s so easy to sometimes let things slide, but try as much as you can to stay on top of things. Don’t trust that just because someone said they would do something (like put you on a waitlist, or call you back with a cancellation) – well, don’t trust that it means that it will happen. It sucks, but you need to be the annoying parent who calls back and doublechecks this stuff. Things fall through the cracks and the squeaky (gently pleading) wheel does get the grease.
  6. Take all the help you can get
    If your school or daycare or TPSL therapist mentions that they know of a resource that might be helpful – take them up on it. Sometimes, they may not be a fit, but once in a while, you may hit the jackpot and get hooked up with someone that will help you – or the little guy – more than you ever could imagine. The city has resources that are not obvious or easily available – such as the resource ECE consultants that can come in and help guide your daycare teachers about ways to improve the classroom to make it easier on your child. They can also help you to navigate the system and act as an advocate for you both – something you will need. They may even act as social worker/therapist, listening and providing a shoulder to lean on when you need it most. We’ve been very lucky in this regard and for that I am so, so thankful.
  7. Give yourself a break sometimes
    The waiting is the hardest part;  it will be incredibly hard not to feel like you need to be doing something at all times to ‘move the ball forward’. Don’t forget that to be the best mom you can be, you need to be healthy yourself. Staying up all night (night, after night) researching online is not “going to fix this”, and missing one week of therapy is not going to make or break anything. In fact, you both need a break every once in a while, just to enjoy being  – being a mom, being a kid, being a family. Be easy on yourself and when people tell you you’re an amazing parent, listen. When someone offers a hug, take it. And when someone offers to listen, talk. It helps, because this is not going to be easy.
  8. Finally, don’t forget to enjoy that beautiful child of yours
    Whatever you do, don’t get so caught up in a diagnosis, or in looking for symptoms, or tracking progress (or a seeming lack of progress), that you forget to enjoy watching your most precious child grow up.  Try, with all your might, to let him just be him, without all the expectations. Stop comparing him to the other children you see. Enjoy every hug and cuddle and giggle, and take the time to find the things he loves most and be a part of those with him.  Those little moments when you let it all go will be precious for both of you.Oh, and one last thing – don’t ever, ever, ever give up hope.
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3 Responses to "If I could go back 9 months, I’d tell myself…(a.k.a. My advice for parents in similar shoes)"

Eloquent and insightful and beautifully written, as always!

Thanks Rachel 🙂 I appreciate and value your opinion always. xo

What a wonderful help this will be to other parents dealing with similar difficulties.
I am so proud of you.

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