Sunday, September 27, 2009

These Boots Are Made For Walking.

Yes, it's September. And yes, Max is already wearing his snow boots. You would too, if you had boots like his. They are Geox Junior Boys Snow Boots. We call them "moon boots" because they look so technologically advanced that we would hazard a guess that they are the official uniform of astronauts at NASA.

Why, you ask, does Max need fancy "moon boots"? He needs them because this child, much like his father, will not tolerate cheap footwear. The one time I bought him cheap boots, he absolutely refused to wear them (plus he acted like he couldn't walk in them, but whatever). Scott ended up taking him out and getting him fitted for Geox boots. In the end we ended up buying him two pairs of boots. This year I just went ahead and bit the bullet, got him the expensive boots right off the bat. And he loves them. He loves them so much that the moment he catches sight of them, hidden the back of the closet, he demands to wear them. All day. On a sunny day in September. No pants, no socks, just a boy and his boots. Quite a vision really. He wore them from noon until bedtime, when he was finally willing to take them off for his bath. Good thing they are specifically built to breathe, so his feet didn't sweat. I guess that's part of what you're paying for.

Not to be outdone, Cameron also loves her boots. More on that later though. I have to dig my old boots out to take to the shoe repair place to get the heels fixed. No new boots for me this year!

Tuesday, September 22, 2009

Cameron: Human Whack-A-Mole In Training.

I have written before that Cameron is a gift. And not just a birthday gift either (though she was born on my birthday). She is balm for my soul. She is pure joy on the hardest days. She has a smile that warms my heart. I rarely worry about Cameron, though I do feel guilty about that fact that I don't worry about her like I worry about Max. Cameron loves her big brother. She puts up with a lot. For a few weeks she even tolerated being treated like a human whack-a-mole as Max decided a fantastic way to get attention was to bop her on the head and knock her on her butt at every opportunity. Lucky for Cameron, Max's Senior Therapist Valinda helped us sort it all out and Max has cut out the Rabbit Foo-Foo act.
Cameron wants to do whatever Max is doing and he finds this terrificly annoying. As she gets bigger and more insistent, I often sit back and observe, letting them work out their sibling relationship. Of course I would step in if either of them got out of hand. I've learned that Cameron has it in her to cry "wolf" and that we need to be aware of that. She is also not above biting Max, which is an issue because he is oblivious to pain and she could really do damage and we wouldn't know until we saw the evidence. Most of the time their relationship is normal though, and through thick and thin, I am so happy for Max that he has a little sister.
The thing that cracks me up the most about Cameron is her love of gadgets. This girl loves remote controls, blackberrys, cell phones, wireless mice, and laptops. Even when she isn't feeling well, she finds solace in capturing a piece of technology and claiming it as her own. My kind of girl.

Sunday, September 20, 2009

Max Update: The Lion Sleeps Tonight.

Max doesn't "officially" nap anymore. That's not to say that he doesn't find a way to catch a few zzz's during the day (usually in the car on the way home from blueballoon). On weekends he typically conks out for a few minutes around 4pm. I took this photo during this afternoon's Chicago-Pittsburgh game, which they were both clearly invested in.

Things seem to finally be settling down. This summer was a roller coaster. We increased Max's therapy hours, put him in 2 weeks of music camp, started therapeutic listening, potty trained him, and moved him into the preschool room at daycare. When I add it all up, it suddenly becomes very clear why it was a tough few months. Max's schedule is now set for the Fall. He is in daycare every morning, and spends every weekday afternoon at blueballoon. He also has a session at blueballoon on Saturday mornings. His weekday afternoon sessions start with either Speech Therapy, Music Therapy or Occupational Therapy and are followed by a three hour block of IBI. For the amount of time he spends at the clinic, I feel like he should have his own room with his name on the door. But if ever there was a poster child for early intervention and intensive treatment blocks, Max would be the first in line. When I think back to the child I brought in to be assessed last December, and the child Max has become, the comparison is night and day.

When he started, he didn't have any words. He was unable to deal with the simplest transition without having a meltdown. He didn't respond to his name, wave goodbye, or play games, let alone games that required turn taking. He couldn't tolerate large groups of children. He bolted the moment he got the chance. His eye contact was hit and miss, as was his joint attention. He didn't say "mama".

I'm not saying he's got everything down perfectly, there is a long, long road ahead of us. But what a difference! The things that I love about Max, is that he has always responded to treatment, and he has always made progress (be it in little steps), and he has always started every day with a huge smile. He is smart as a whip, he loves to tease and flirt, and while many children need tangible or edible reinforcers, all Max truly desires is for you to cheer him on. I don't know where our path will lead us, but this journey teaches me something new everyday.

Tuesday, September 15, 2009

The Words Get In the Way.

As a social media junkie, I communicate with those in my world in many different ways. Gmail, work email, MSN Messenger, Gmail chat, Blackberry PIN, mobile phone, home phone, office phone, facebook, facebook chat (which is a crappy app), my blog, blog comments, youtube, yahoo groups, email groups, and my favourite of course, skype.Some people communicate with me through specific channels, while others have much more access and seemingly know how to tap into my deepest dream to find me when they need me. I'm not complaining - I've made myself accessible. One thing I've been thinking a lot about lately is for those that I communicate with across different channels, how do I decide which channel to use when I need to talk?

It seems that the channel I select is truly dependent on what it is I want to say. Quick questions for people I work with? MSN Messenger. More complex work discussions around sensitive issues? Phone or in person for sure. And if I want to make sure you get something done, I am not above emailing you and copying your manager. Yeah, I'll go there.

For the personal stuff though, that's different. In terms of Scott, I can find him many ways during the day. Typically I opt for MSN Messenger because we are both on it for work. We're both busy, it's quick, to the point and makes it easy to check in with each other. For longer conversations, I call him on his office phone, but that is typically kept to a minimum as he shares an office with a bunch of guys and probably doesn't need his lovely wife keeping tabs on him and having to say "I love you" in front of his coworkers.

The strangest channel for me is skype. I love skype. It makes me feel like I'm sitting and having coffee with a person who is across the continent, or even across the world. You get to see and hear people that in the past you only got to speak on the phone with. But does it give you an inaccurate sense of spending time with someone? In some ways it is better than the phone, but I find there are things I can say to someone in person, over the phone or via chat that I can't say over skype. There is a disconnect because while you can see and hear that person, you don't have the benefit of touch. You can't have a hard or deep conversation and then reassure someone, and give them a hug to let them know it's okay. You don't have the safety of hiding behind text, or hiding your face as you can on the phone. You are connected but disconnected. You are a part of that person's day but not part of their world.

What does this all mean? I guess that while we have more options on how we communicate with people, we need to make conscious decisions about what channels we use, and ensure the medium fits the message, and the message isn't changed by the medium.

Monday, September 14, 2009

Mental Health Monday: Delusional Ramblings.

This is what I looked like last week, before I got knocked on my ass with stomach flu. Turns out, not being able to keep anything in your stomach for 3 days, be it liquid or solid, will make you start thinking very odd thoughts.

Am I the only person on the earth who reads magazines from back to front?

Wow, H&M's fall collection is to die for.

This is a pretty awesome site.

I wish I had taken dance lessons as a kid.

I feel better about humanity since I stopped watching "Jon & Kate Plus Eight".

Having young children is a slog some days.

Once you go mac there's no going back.

I should not use my blackberry on an empty stomach.

When I was a kid, my biggest nightmare was the idea of being naked in public. Doesn't faze me so much now.

Jay-z looks old, but he can still rap his ass off.

And that, my friends, is why I haven't blogged in the last week.

Monday, September 07, 2009

The Early Days of Autism.

I've lost track of how many times I've been asked "when did you know Max was Autistic?". That's a tough question to answer. Scott claims to have known from a very early stage. I knew something was "up" with Max, but it took me a long time to finally get to the point that I could accept it, to actually say the word. Once I did it was a big relief to Scott who had long since felt I was burying my head in the sand. It was a big relief to me too, because it is a lot easier to fight a known enemy instead of licking your finger and putting it in the air to see which way the wind is blowing.

When I look back at video of Max, I can see symptoms of Autism from as early as 6 months old. He never really made strange with anyone, didn't get upset if I left the room or put him down, and his highs were super high (hysterical laughing fits), and his lows were devastating (especially when he was hungry because he refused to take a bottle and I wasn't home because I was running late). Being first time parents, we thought Max was just a laid back little dude, happy to be held by anyone. We thought we were lucky. Now that we have a second child, the difference is glaring.

Max never played with his toys. Not functionally or creatively. He liked to throw them, or push them across the floor. He didn't play peekaboo, wave hello or goodbye, or attempt to make any sounds except "dadadada". He liked to bounce on the couch, rocking back and forth, with quite a bit of force. He did this in this crib and against walls as well, to the point that he gave himself a welt on the back of his head, and his hair fell out in that one spot. We had to move him out of his crib and into a pack 'n play so that he wouldn't hurt himself and he wouldn't keep the entire house up all night with his rocking whenever he woke up. Other things we noticed were that he didn't respond to his name when called, (but he did respond when I sang), he didn't reach his arms out to be picked up, and he didn't point at all.

When we brought Max to our doctor at the age of 14 months, Autism checklist in hand, we weren't taken seriously. When we pointed out that he wasn't reaching any of his communication or play milestones we were told that these milestones were just guidelines, and that some kids reach them early, and some kids reach them later. We were referred for a hearing test (at my request) and told to come back in a few months. To this day I wish I had demanded a referral to a paediatrician. If I could turn back time, I would have refused to leave until I got Max into a doctor who would have taken our concerns seriously instead of brushing us off as nervous, first time parents. Instead, we continued our journey, wandering aimlessly, struggling to find services for Max, searching for an answer which we didn't find until December 2008, a year and a half later.

It's easy to have 20/20 hindsight. If we were to have another child with Autism, we would see the symptoms right away. Now that we've had another child, one who does all the things that babies are "supposed" to do, the difference is glaring. While I'm thrilled to see my daughter imitate, point, make strange, wave goodbye and play functionally and creatively without prompting, it also stings that Max didn't do these things, and when we expressed our concerns we weren't taken seriously.

What I would say to any parent with concerns about their child's development is that if you feel something isn't quite right, or that something is "up", explore every avenue, rattle every cage, and don't give up until you are satisfied that your concerns are being addressed and that your child is getting the care that he or she needs and deserves. And never accept being patted on the head and told not to worry because you area first time parent. Nobody knows your child better than you, so go with your gut.

Friday, September 04, 2009

As Time Slides By.

This was one of those weeks where I couldn't keep track of the days, where I was supposed to be, or quite frankly, what my name was. As I'm fond of saying, "call me Bob, just call me". I was actually surprised when I realized that today was Friday. And while most people are thrilled it's a long weekend, for me, not so much. For me, Labour Day will be a day where Max will struggle because his usual routine has been interrupted. By Monday night, Scott and I will be relieved that we "get" to go back to work on Tuesday. I'm not proud of that, but you try 3 days at home with an Autistic 3 year old who is used to being in daycare all morning and therapy all afternoon, and you see if you aren't ready to say uncle by noon on Day One.

My Fall is filling up fast, and I feel like time is moving faster than I can process it. Max is having progress daily, which is wonderful. Cameron too (words!!, play, running, you name it, she's doing it). My work is awesome, full of new challenges, completely inspiring, and for the first time in my career, my work day flies by, every day. My "to do" list is so long I can't possibly get it done, I learn something new every day, and I have ultimate respect for each and every person I work with. And what I do matters. Most nights I fall into bed, already thinking about what the next day will bring. Now if I could just talk my kiddos to BOTH sleeping through the night, on the SAME night, that would be excellent.

I have a lot of people I owe phone calls and emails. I look at my message light beeping and think to myself, if it's really important, they'll call back, right? Not my norm at all, but an indication of where I'm at right now. So, things are good, but I need to find a moment to catch a breather and regroup. But not today...still work to do today...and tomorrow...

Tuesday, September 01, 2009

Giving Thanks: Super Bumpa.

Scott and I are very blessed. Through all of the challenges we face, we know this, and we give thanks for these blessings every day. One of our biggest blessings is Scott's Dad, Dave. He is also commonly known in our house as "Bumpa". He got that nickname at Max's first daycare. When he would arrive to pick Max up at the end of every day, all of the kids would rush him and say "Max's Bumpa is here!!". Somehow the name stuck. He doesn't seem to mind. After all, there can only be one Bumpa.

I'm not sure where to start when it comes to all the things that Dave does for us. He retired right around the time I had Max. When I was on maternity leave he would come and pick me up to take Max and myself to doctor's appointments. When I went back to work he picked Max up from daycare every day so that Scott and I didn't have to rush home or stress out when we were sitting in traffic. He has changed his share of poopy diapers (for both Max and Cameron). And it was Dave who was first given the information that Max's first caregiver thought that Max was Autistic. Talk about a burden - this woman casually mentioned it to Dave as he picked Max up one afternoon. I'm sure he struggled with how to handle it. It would likely have been easier to just ignore it, push it down, and not mention it. But he didn't. He told us what she had said, and I'm sure that was incredibly painful for him. But it was the right thing to do, because it meant that we were able to get Max the help he needed from a very young age.

As Max's doctor's and therapy appointments increased, and the juggling of needing to be at X location at Y time began, Dave was there for us. He never made us feel as if he was doing us a favour, and was always happy to jump in. I'm sure there were days when he was relieved to go home. I'm sure there were times when he didn't feel like going above and beyond. But we never knew it. The bonus was and still is that Max and Cameron love their Bumpa more than tall tall buildings. He can do no wrong in their eyes. He comes with fresh energy, makes funny faces and sounds, and is always up for a good time. Even on the days when Max's behaviour is most challenging, he takes a deep breath and is more worried about how Scott and I are coping than his own stress. On the day that I got Max's official diagnosis, he asked me how the appointment went, and when I couldn't talk about it, he looked me in the eyes and said "it's okay, you don't have to say it". I know that he and Scott's mom went home and shed their own tears, but in that moment, he was my rock, and I will never forget that.

He has seen us at our rawest, on the days when we have nothing left to give. He has sent me up to my room to have a nap when he sees I am about to fall over. I am fairly certain that Scott has not mowed the lawn in over 2 years. I know I have not trimmed one hedge or pulled one weed. Yet our grass is cut, our weeds are pulled, our recycling boxes are brought in from the curb. We say thank you thank you thank you, but I can only hope he fully understands how much his love and support mean to us.

Max's Bumpa is one of his biggest champions. Dave loves his grandson with the ferocity of a papa bear. He sees the tiniest progress as a mile in a marathon. He has been a part of this journey from the beginning to the present, and he shares in our vision for Max's successful future. I know that there are days for him that are hard. That watching us implement some of the behaviour strategies we have to use is stressful, and hard to cope with. But he stands by us, works through the hard stuff, and is someone we lean on every day. He gives us his time, which is his most valuable asset, and he has also provided financial support while we wait for government funding for Max's therapy.

So many people with special needs children struggle in this journey without any help. They are not blessed with a Bumpa. And some family members may not be strong enough to travel a journey with so many ups and downs, beauty and devastation. We are blessed to have the love and support of Scott's dad, Dave. We can't possibly say it enough, so I'll say it once again: Thank you Bumpa.