Monthly Archives: October 2012

It is hard, and it hurts

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I’ve heard from a lot of people in the last couple of days – thank you. As I’ve mentioned before, sometimes when I am weak, those who surround me bring me strength.

I just wanted to let everyone know – we are okay. Yesterday we were hurting, today we are hurting – but we are okay.

Our hurt stems from a place that can really only be described as helplessness. We are not hurting because Maddy is delayed in her language. Frankly, that is the least of our worries. We are hurting because Maddy’s delays are a sign of her challenges.

I know that often when we’re out and about, Maddy seems so typical. We have days at home where Maddy seems typical too. We have weeks, even, when she seems so typical.  During these moments, we often find ourselves wondering if she really isn’t delayed (well, until we’re reminded again by a new report).

We also have days and weeks that are tough. They are tough for us, but first and foremost, they are tough for Maddy. It is hard watching her struggle with transitions – something that happens over and over again every single day. It is hard watching her meltdown because she stepped on a small piece of onion peel in the kitchen and can’t manage to stay calm enough to take it off of her foot herself. It is hard watching her completely meltdown and not be able to take part in what seem like simple activities (say, a boat ride, or dressing up for Halloween). It is hard watching her toss and turn all night, not sleeping for more than half an hour at a time.  It is hard watching her vomit, simply from trying some ground beef. It is hard seeing how she struggles to interact with kids around her. It is hard watching her get worked up every single time we need to put a coat on her. It is hard listening to her scream, and watching her thrash on the floor, not wanting any form of comfort from us. It is just hard.

What Maddy’s delays signal to us, is that yes, indeed, she is having a hard time. That hurts. It hurts that the things she struggles with, we are powerless to help. We can try our best, offer her all of the therapy that money can buy, but her challenges are still there. They exist in an unreachable space.

Our end goal is not to eliminate her challenges (in my dream world, maybe). Our end goal is to learn techniques that allow Maddy to cope with these challenges. I know we will get there. I have all of the faith in the world that one day we will look back on this and see how far we’ve come. I see us proudly watching Maddy reach her dreams – dreams we don’t even know exist for her.

I know that these days are ahead of us. But, even though I believe this is our future, I still need to face today, tomorrow, and next week. I need to face the difficulty of our present, and that hurts.

These are a few of my favourite things

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As I mentioned earlier, we have had a lot of positive to focus on the past couple of weeks in our house. We got a summary of Maddy’s progress today and we were thrilled to see it. Tomorrow we start phase two of her behavioural therapy program. We’re also picking up occupational therapy again two times a week, and setting up an assessment with a speech language pathologist to figure out our next steps in supporting Maddy’s language development.

At home we have new strategies too. We have a home program to work on the skills Maddy has been learning in her behavioural therapy program, and we are also starting to make use of a visual schedule my sister, Lindsay, prepared for us.

In an earlier post I talked about ways in which Eric and I were working to deal with the stress of raising a child with special needs. Tonight I’m sharing with you another tactic we use – listing our favourite things about Madeleine.

Maddy, we love:

  1. Your sweet little pigtails.
  2. How you love wearing boots indoors, but hate wearing pants.
  3. Your love (and lack of fear) of all dogs.
  4. That you love “Smooth Road.”
  5. The way you sleep with your bum in the air.
  6. All of your hugs… but especially the ones where you squeeze our necks or squish your cheek right up next to ours.
  7. The way you give us your forehead when we say, “kiss?”
  8. The reddish tint to your hair and your grey eyes.
  9. Cuddling with you in the wee morning hours (even if your definition of cuddling is actually climbing on top of us, banging your head on ours, or sticking your fingers in our eyes, ears, and noses until you fall asleep again).
  10. Your love of music.
  11. How peaceful and content you look when you’re asleep, even if you found the day a tough one.
  12. How much you look like your daddy.
  13. The sweet baby smell you still have.
  14. Your squishy little legs and your pudgy belly.
  15. Absolutely everything!

I blog a lot about our challenges… mostly because that’s what’s most therapeutic for me, but also so that people with similar experiences can read what I write and not feel so alone. And to be honest, if I had a magic wand, I would take SPD away from Maddy. I would make the way she senses our world less scary, anxiety-provoking, and painful than it is for her on a daily basis. I would make it not as challenging for her to reach the milestones that so many parents take for granted. I would make it so that she feels safe in our world. But, first and foremost, what I want you all to know, but especially what I want my sweet little girl to know is:

Madeleine, you are perfect in every way. You are the light and joy of our life. We hurt because we love you so much, not because we think anything less.

Monkey see, monkey do

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Maddy has been learning a whole slew of new skills in her intensive therapy program ‘Getting Ready to Learn’. The last couple of days we almost don’t even recognize her — we’ve seen that much progress (and I promise I’m not exaggerating).

For the first time this weekend, Maddy looked at me when my Uncle approached her to determine if he was okay or safe to interact with. We also saw her looking at the people in the room while I was playing a game with her, you know, to make sure they were all watching what she was doing. If you’re thinking whoop-dee-doo, she should have been doing that ages ago, you’re right. But, she wasn’t doing it ages ago. These are new skills she’s developing from her therapy program. Exciting, right?

Another of her new skills, which is a favourite of ours, is imitation. So much fun!

Uncle Scotty says, “Monkey see monkey do! Eric’s such a quick learner!”

This is another skill she should have acquired long before now, but for whatever reason, she didn’t. It is so much fun watching her imitate movement, and she was attempting a few vocal imitations too.

Ah-ma-zing!

We have no idea how close she’s coming to mastering these skills, or whether or not they’re up to where they should be for her age. But, in this moment, we don’t care. We’re taking the time to celebrate some important developmental skills that we might have otherwise taken for granted. These are stepping-stones to future milestones that we will patiently wait and watch for one day. For now, we’ll just live in the moment and enjoy.

It takes a village

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It takes a village to raise a child. A common proverb, but, if there’s anything I’ve learned in the past 15 months, it’s that not only does it take a village, it takes a very special village. We’ve been so fortunate that our village has not just included our family and friends (including my virtual friends whom I only know through facebook groups or online forums), but also a ton of professionals: osteopath, naturopath, homeopath, chiropractor, physiotherapist, occupational therapist, behavioural consultant, instructor therapist, speech-language pathologist, holistic nutritionist, dietitian, family physician, pediatrician, and pediatric gastroenterologist – whew! Many of these professionals we still see on a somewhat regular basis. Each of them has helped us with some piece that has led to improving and supporting our parenting for Maddy.

Most recently, we’ve been participating in the ‘Getting Ready to Learn’ program at Blue Balloon – we’re just over half way through the sessions of the first phase. It targets a variety of social and play skills that Maddy is delayed in – playing with toys purposefully, playing independently (that is, not on someone’s lap) responding to her name, following a point, imitation, etc.

The program has been an amazing experience so far. We have already seen some improvement in Maddy’s eye contact, social referencing, joint attention, pointing, responding to her name, imitating, and playing. As we understand, she still has a way to go before she’s mastered most of them, but it’s such a positive experience to see how much she’s already improved. Last night Eric and I felt as though Maddy was interacting with us in a way we have never experienced before. It was so incredible. Even her daycare has given us positive feedback – for the first time today, she was pulling toys out of a basket and giving them to the workers! At the advice of our behavioural therapist, we’re trying not to make any long-term judgments based on this progress, but it is so encouraging.

Now, it’s not all sunshine and rainbows, tonight she cried from the moment she got home from daycare until she fell asleep, skipping dinner along the way (let’s face it, she does have SPD). But, we feel purposeful – we’re tracking these difficult moments and the behavioural consultant will help us create strategies after reviewing our data. Our days range from 3-4 tantrums the entire day, to 25 tantrums in the time before and after daycare (about 5 hours). Some of those tantrums still last 30 mins or longer. However, surviving the tantrums is not quite as stressful when we’re documenting them, because we know that help is on its way.

We’re now in the process of setting up our appointments for the second phase of the Getting Ready to Learn program, and submitting our intake forms for an ASD screening program.

They say it takes a village to raise a child, but I think it also takes a village to keep parents focused and sane. Without our village, not only would Maddy not have made the gains she’s made over the past 15 months, but our days would be a lot more gloomy and we wouldn’t feel the happiness and hope we feel each day. It sure does take a village, and we’re so thankful you’re part of ours!