It has been one year since Max was officially diagnosed with Autism. A year of progress. A year of pain. A year of hope. A year of grieving.
Max has experienced tremendous growth over the past 12 months. When he started therapy he could not transition from the waiting room to the therapy room without having a complete meltdown. The reports from each session would include "50 minutes of behaviour" (meaning he was unable to complete tasks because he was screaming or throwing a tantrum). It's rare to see those types of notes in his reports these days. More often than not I get reports that he had a good, if not great session. In January he had no words. Now he greets people unprompted, tells us what he wants, and has mastered "no" with gusto. His therapists take such joy in reporting his progress, celebrating his wins with us.
The progress comes slowly. Most days it feels like two steps forward, one step back. We take tremendous pride in the wins and try not to feel devastated when Max's behaviour slides. It's a grind every day and it takes its toll on me, and on Scott. We try to have a sense of humour. It's dark and rude and sarcastic, and you probably wouldn't understand it if you overheard us. But it helps and it keeps us sane. We are burdened and blessed, tested and enlightened. I would never ask to be on this journey or wish it on anyone, but I will say I have met the most amazing people because of Autism, and my life is richer for it.
Here's to next year little boy. I look forward to our wins.
Every day, I get to make a choice. Do I sink or do I swim? Most days, it would be easy to say "I can't do this, this is too hard, I'm done". But really, that isn't a choice and who am I kidding? Every day I get up, push my heavy heart aside and look in the mirror at the tired and worn down version of myself that I never envisioned when I told Scott "I want a baby". I look in the mirror and triple-dog-dare myself to muster up the strength to battle through another day. To give Max what he needs, make sure Cameron gets the attention she deserves (and demands!) and that I leave enough left over for Scott (or at least try). I go to work and I do my best to do a good job. Most days I feel like I fall short on all fronts. I look at Max as he gets bigger and harder to manage and I worry. He is freakishly strong. We are now at a point where we can't physically force him to do anything he doesn't want to do. I'm only 5'4 - he'll tower over me in the not so distant future. What am I supposed to do then?
I've had to make some difficult decisions around Max over the past few weeks. I decided to remove him from his daycare (the one I worked so hard with to transition him to the preschool room). After spending a lot of money attempting to train their staff and get him into a consistent routine, it was all for naught. Their staff turnover made it impossible for Max to pair with his teachers and their programming just wasn't able to support a child with special needs. I feel like I failed. I wanted so badly for him to be in an environment where he would get exposed to "normal" kids. But after he got sent home with feces on his shirt and was allowed to eat mashed potatoes with his hands (he knows how to eat with a spoon and they didn't even give him one), I knew that this daycare was doing more harm than good and I needed to find something else for him.
That something else is to be determined. For now we are increasing his therapy hours, leaning on our respite worker, and calling in Super Bumpa and No Nonsense Nana. As I got ready to leave for work this morning, I looked out the backdoor at him, running around the backyard happily, his respite worker Kailee playing with him, and I felt so so sad. I want him to get to play with other kids. I want him to want to play with other kids. He isn't there yet. So I swim on. Of course I do.
Cameron and Max learned how to say "NO!" this week. Specifically, Cameron learned how to say "NO!" and then Max promptly followed (which led to a super fun weekend). I shot this video on my blackberry tonight. The quality is crap because the lighting is low and Cameron is jumping all over me, but the audio is loud and clear. Oy. Wish us luck!
When Fickle Feline gets quiet, you can safely assume that I am completely overwhelmed with life and just trying to hang on for the ride. I wish I could tell you I was out crusading against Autism, brunching with Dalton McGuinty to get him to see the light, but most days, I am just trying to keep my head above water and be a good mom. But I do need to update more, because there is a lot to say. I just prefer to be positive, so when I'm in a head space that is "cup is half empty" instead of my usual "cup is overflowing", I tend to get introverted and not want to put that negative energy out into the universe.
But... my kids did dress up for Halloween... And there are a lot of good things to focus on:
- tomorrow I am going to get to meet a mom who brought her son to blueballoon after reading my blog. - the trees in my neighborhood are beautiful (yellow and orange and red) - Max is having a lot of progress in his therapy and starting to verbally request things without a visual prompt (huge!!) - my custom Christmas cards have arrived and are ready for me to fill out and put in the mail (maybe that will help me get in the Christmas spirit?!)
More later - I promise not to take two weeks to update either!
One of the hardest things for any parent to do is look at his or her child and say "my child is not like the other children, something is wrong". Even harder is picking up the phone, and calling a doctor to schedule an appointment, telling a nurse why you are in to see the doctor, and then having a doctor examine your child to confirm your suspicions. And so starts the journey for many parents who have children with special needs.
Part of my job is taking those calls from parents who are just starting their journey. I listen to their concerns, document their child's case history, and figure out which therapist they should see, who can best assess their child's needs. It is a great job, and if I can be a positive part of someone's journey, a part that doesn't kick them when they are down, or leave them in tears in a parking lot, then that's a great day. Even better if I can make them feel confident that they are making a strong first step, or let them know that they are not alone.
It does take a lot out of me (hence the disappearing act), especially the parents who are calling because their child has a new diagnosis of Autism. It hits close to home. I want to take these parents and give them a virtual hug, tell them I know it sucks, I know their world feels like it is spinning out of control and that they feel like they don't know where to turn. I want to tell them that it will get better, and that I get it, that it will always be hard, and that no matter what is "wrong" with their child, he is still perfect in his own way. He is still their baby.
At the end of the day, it is so worth it to help people. It helps me take the focus off of myself, and to remember how fortunate I am. If I can lift someone up for even just a few minutes, that is a great thing. It feels good to pay it forward. Dog knows many parents have done it for me.
I was speaking with blueballoon's Director of Behaviour Therapy tonight, about Max, Autism, the journey, my frustrations. I have been feeling really anxious about Max lately. Wanting answers. To know where we are going. What's the plan? What about junior kindergarten? Is Max getting everything he needs? Are we doing absolutely everything we can for him? How does he stack up next to other kids in IBI programs? Is he having enough progress? Not enough? How does he measure up to the supposed benchmarks that are used to determine who gets funding and for how long? Yeah, I must be a real treat to deal with right now, don't I know it.
I was reminded that when Max started in January, his goals were very basic. He was unable to transition from the waiting room to the treatment room without having a meltdown. It took him a long time to bond with new therapists. He wasn't able to imitate or sit at a table to do work. And now, as frustrating and challenging as his behaviour can be at times, he transitions without a problem. He says "hi" and "bye" to everyone. He looks you in the eye. He is beginning to use language functionally. He is starting to tolerate his little sister. He can follow a visual schedule, sit at a table for 45 minutes of therapy, blow bubbles, and he no longer throws tantrums because he feels that nobody understands him. He is potty trained (for the most part), can walk down the sidewalk without bolting into the street, and most importantly, he is happy.
It's easy to lose the forest from the trees in this journey. I'm thankful I have such a great team supporting Max (and me).
It's been a while since I posted a bunch of videos, so I thought I'd show everyone what we were up to on this beautiful fall day.
Cam & I discussed Obama being nominated for a Nobel Peace Prize (we think he will absolutely do something to deserve it - other than being the 1st black president, but we question the timing of it). We also seem to agree that the Ontario Government really, REALLY mishandled the whole e-Health record situation. With all that money to piss away on consultants, it blows our minds that they don't have enough money for therapy for children with special needs. For shame.
Cam likes to dance. She also likes the old skool rap, and does a pretty solid MC Hammer impression (hum "Can't Touch This" as she dances to see what I mean).
Most of the time Max prefers to steer clear of Cam, unless of course it is to give her a bop on the head. He seems to have turned a corner as he climbed into the sandbox next to her today and played right next to her for about 15 minutes. He then proceeded to give her a loving thump. Ah siblings...
Happy Thanksgiving everyone! Remember to wear your eating pants!!
I've been feeling a lot of mixed emotions lately. Excited when I witness tangible displays of Max's progress, contrasted with moments of clarity where I see just how different my little boy is from all of the other little boys. Earlier this week, when I picked Max up to take him for his usual afternoon of therapy at blueballoon, I noticed that there was a note taped to his cubby at daycare. On further inspection I saw it was an invitation to a birthday party. I quickly realized that Max had not been invited because he was actually considered a friend, all of the kids in the class had been invited. For a second I thought "that's nice that they included Max, but he probably won't be able to handle it". Then I shook my head, and thought, "he may not be able to handle it, but we have to give him the chance to try". This party is at one of those big indoor madhouse-gym places, with slides and bridges to run across, places to bounce, and lots of ways to burn off steam. In actuality, Max will probably love it.
I called and left a message to rsvp, thanking the mom for inviting Max, and also explaining that Max is Autistic, and that he will probably enjoy it, but if he is having a hard day that I hoped they wouldn't take offense if he wasn't able to stay for the entire party. It is important to me to give Max the same opportunities that his peers get, that he be included. The older he gets, the more likely it is that he will get excluded for being different. I hope and pray and wish for that not to be true, but I know that as kids get older, they are less accepting of kids who don't "fit in".
For now, Max seems to be well liked by the kids at his daycare. They don't mind that he doesn't really play with them. They accept that he seems to get special treatment at times, and that he gets visits from special teachers that are only there to see him, and not everyone else. They don't hold it against him when he acts disruptive, and they don't question that Max gets picked up during nap time every day. He even gets the odd hug from the girls in the room (we can't expect them to resist such a handsome boy now, can we?).
When I look back at pictures of Max as a baby, I remember very clearly all of my hopes and dreams for Max. I still have hopes and dreams for him, but they are different from what they used to be. I just want him to be happy, feel loved, and to have all the opportunities in the world. I never want him to feel like he doesn't fit, or that nobody "gets" him. I never want him to lose that smile, that pure heart. I want him to be surrounded by people that see all of his beauty and promise and love him for everything he is. These are the things I wish for.
Gadget Girl strikes again (checking my blackberry email and texting my boss, no doubt): I can't say "no" to her now, how will I manage when she actually starts asking for more than her "baba" and to be picked up? Was there ever any question who was running the show?
This past week has tested every thread of my being. I'm not sure if Max is coming down with something, is bummed that summer (what we had of it) is over, or is just acting like a three year old, but his behaviour has been off the charts. And not off the charts in a good way. Off the charts in a way that makes you want to scream "Okay Autism, I get it. Uncle. You are stronger than me. You win. I give up!". But that isn't an option, so you lick your wounds, gather your strength, and live to see another day, another battle.
If I had to describe Autism, I'd say Autism is a Mixed Martial Arts fighter, straight out of the UFC. Autism will kick you when you're down and thinks nothing about punching you in the back - right in the kidneys. I've been fighting this way too much by the books, more like an amateur boxer in the Olympics. I've been playing "nice", following the rules, and I keep getting surprised by the low blows. I have to remember that Autism takes no prisoners. Autism will trip me, spit on me, break my arm even after I tap out, and most of all, Autism seemingly never sleeps.
Sleep is my achilles heal, and Autism knows this. When Max doesn't sleep, he's off the walls, and I am left without the strength to manage him, to cope. Add to that a baby who needs me too, a full-time job, and a husband who is also worn out from being in the ring fighting Autism with me, and you have one beat down Katrina, who this week, was left cowering in the corner, my face a pulpy mess.
So, what to do? Try to get some sleep. Then gather my stamina, bring in the big guns, and pray that this next week I am stronger than Autism. After all, I can fight dirty too.
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!
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.
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.
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.
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?
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.
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...
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 providedfinancial 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.
As most of you know, my 3 year old son Max was diagnosed with Autism last December. He has been receiving intensive therapy since January of this year in the form of IBI, Music, Occupational, and Speech therapy at blueballoon. On August 20th 2009, after 2 weeks of participating in a Music & Speech camp in the mornings and IBI in the afternoons, and starting a therapeutic listening program, he had a breakthrough. He was "suddenly" able to imitate language and movement. He said the word "mama". He tapped his head when prompted, even stomped his feet upon request. These are things parents with "normal" kids take for granted. Me and Lionel, we danced on the ceiling.
Scott on his way to drop Cam off at daycare and head into the office:Cameron finding creative ways to sit in her chair:Max enjoying his favourite snack:Captain Cameron!:My beautiful soul Max:
The following is a guest post by my husband Scott who works for The Score and writes for his own blog Raptorblog.com. He wants to start writing about his experiences being a dad, specifically the dad of an Autistic child. I thought I'd give him a shot here on Fickle Feline, so let me know if you give him the thumbs up or thumbs down.
I took a vacation day today to accompany Max on a daycare field trip to Bronte Creek Provincial Park. Their website describes it as "a place to unwind and step back in time." If you know anything about me, you'll understand why that didn't sound appealing. Their attractions include "living history demonstrations in an 1890s farmhouse." Great, so you're telling me this place doesn't have modern plumbing, then? I half-expected to see their employees throwing buckets of human sewage out of windows.
We herded the lil' ones onto a school bus at the daycare at around 9:30 and I was pleasantly surprised to discover that Max quite enjoyed riding on a bus. He didn't squirm or run up and down the corridor, he just sat next to me and looked around in wonder. At the time, I considered it a good omen for the rest of the day.
Then we arrived at Bronte Creek. I'm sure there are people who appreciate the rare modern experience of gazing at the majestic glory of ducks, goats and pigs, but it so happens that Max and I are not among those people. Aside from the fact that they're boring as hell, they stink much worse than Katrina's dumps -- and that's no small feat (edited by me to add: "what are you talking about Scott? I poop vanilla ice cream!!"). Max quickly expressed his displeasure and after an hour of almost dislocating his shoulder from literally dragging him through various mundane displays and barns, I realized that four more hours of this would be a living hell for both of us and called upon my wonderful father to rescue us from this nightmare.
If I had been more realistic, I would have followed the bus in my car so that I could leave the park whenever I wanted, but I was trying to be optimistic that Max could make it through the day without melting down. I've been trying to work on my inherent pessimism about his Autism and I reasoned that giving myself an "out" was an excuse to bail out of the field trip without giving it a fair shot. In retrospect, I should have known better. I could have gone there by myself and I wouldn't have lasted much longer than Max did.
For example, let's talk about the pigs. Look, I know they're smelly and ugly. My love of pork doesn't disavow me of that notion. But what exactly is the point of taking a bunch of pre-schoolers on a field trip to meet these reprehensible creatures? Perhaps the daycare owners were trying to persuade the kids to swear off delicious bacon by witnessing the filthy swine that provide this magnificent foodstuff. I nearly vomited directly onto one of these creatures and I'm still not regretting the Tim Horton's Bagel B.E.L.T I had for breakfast.
Back at our modern, air-conditioned house, Max and I proceeded to chillaximum to the maximum for the remainder of the afternoon -- which is really the only sensible way for me to spend a vacation day. At the time, I assumed the highlight of my day with Max would be the surprisingly pleasant bus ride, but Max had a treat in store for me during one of our many potty trips.
After a successful pee, Max stumbled while trying to disembark from the toilet and bashed his head off the cupboard door beneath the bathroom counter. Naturally, he started crying. Not so naturally, I started laughing hysterically. Look, I know from experience that the kid inherited my hard head and I knew he wasn't badly hurt. This was funny stuff and I won't apologize for it even though he's my own son. As Mel Brooks once said: "Tragedy is when I stub my toe. Comedy is when you fall into an open manhole."
Max turned to me for sympathy and saw me laughing. He tried to put on a good show of being hurt but his tears quickly became intermingled with laughter from the natural infectious quality of a parent's emotions to his or her child. Within seconds, he was flat-out laughing hysterically right along with me, and I hugged him while he tumbled on the floor pantsless -- his supposed cranial agony completely forgotten.
That was the highlight of my day -- sharing a hearty laugh with my 3-year-old about his head trauma while he was naked from the waist down. Go ahead and judge me. I'll just fall back on that old cliche and insist that you had to be there.
I gotta get off the sauce. Really. I thought I had kicked this nasty habit. I even blogged about how I was done with it. Little did I know it was waiting to prey on me when I was my most tired, my most vulnerable. I know I'll try to kick it again, I just have to find the strength. It won't be today. Today I had two.
Turns out Cameron has also developed a taste for the stuff, or at least she thinks it's hella fun to shake up the cans and roll them around on the floor. Hmmm...maybe I shouldn't let her play with the enemy. Or maybe it's okay, just so long as I don't let her drink it. I equate it to playing with Barbies. I played with those big-boobed, tiny waisted, gravity defying dolls well into my teens (shut up) and I turned out just fine. Sure I have a fetish for padded bras and corsets, and I am oddly attracted to men who shellack their hair and sport those orange spray tans, but I'm sure that has nothing to do with my 10 year Barbie love affair.
I know I am not alone - there are many others who love them some Diet Coke. And they don't hang their heads in shame either, they embrace it, wave their freak flag high. For now I am going to join in, until I am stronger and don't have such a deep seeded need for caffeine. One day... but not today.
Today was Max's first day of Preschool, and he rocked it. There were a lot of reasons that it went well, and a lot of people involved in setting Max up for success. We pulled Max out of daycare for the three weeks prior to the big move to get him ready. The first week was for potty training (which he has mastered, thank you very much) and the next two weeks were for an intensive therapy block at blueballoon where Max receives all of his Autism therapy. In his three weeks off he was potty trained, participated in a daily 2.5 hour block of music camp (based on speech and music therapy) and had a huge breakthrough - he started imitating movement and words when prompted. I swear his teachers almost fell over when he returned, looking them square in the eyes and said "hi".
I was worried that he would struggle being with a new group of kids, in a new room, with new teachers. I was worried that he would have a huge meltdown when we arrived (after all, he hadn't been to his daycare in almost a month). I didn't need to worry.
The kids in the preschool room all know Max, and for some reason, they seem to really like him. I even heard one little girl yell "Max is back!" when she saw him enter the playground. Max loves the bigger playground, and did a great job of exploring it (a big improvement from the past where he would have just run in a big circle around the perimetre or gone up and down the slide over and over again). Transitioning back in? No biggie. Peeing in the potty at daycare? Aces. Nap time? Not so much, but we're working on it! It seems that in these past few weeks, Max has exhibited progress on a daily basis. With that also comes challenging behaviour, because he is processing a lot, and being pushed outside his comfort zone. But I'll trade a temper tantrum for a poop in the potty any day. And when I hear Max say "Mama", I swear I'm ready to give him the keys to my car. He already has the keys to my heart.
You like? I'm feeling so much lighter since Max has started talking, I wanted to make a change physically that would reflect this. Seriously - I'm sittin' on top of the world - you could not bring me down if you tried.
Today started out like any other day. I was tired, a bit cranky... lots of work to do, not enough time to do it, the whole nine, you know how it is. But when Max came out of his IBI session this afternoon, running down the hall towards me with a smile that could solve the US Healthcare Crisis, I noticed that Brian had a glimmer in his eyes. After Max gave me his SuperHug(TM), Brian proceeded to tell me that Max had done incredibly well in their session today. Max had started imitating all of the vowel sounds upon request and also imitating Brian's movements when prompted. I wasn't sure what to think, and then Brian asked Max to repeat a series of vowels - AH, AY, OO, OH, EE, WHY - and he did it! HE DID IT!!
Talk about the best day ever! EVER!! My boy is starting to really talk! On the way home, I started asking him to say different words - Da-da, Kitty, and best of all, Mama. And he said them all, clear as day. He said Up, Down, Yes, No, Duck, Ribbit...Cheese! Holy Sh!t (that was me, not him)!! I called Scott and got Max to repeat the same words again so Scott could hear. Then I called my Mom so she could hear too. Then when we got home, Max said "Hi" to Scott's parents. Pure joy. And why now of all times? Max is just finishing up his intensive block at blueballoon - mornings of Music and Speech camp, afternoons of IBI, and increased Occupational Therapy time where we have started Therapeutic Listening. I can't think of any better proof that going hard at something for a set period of time works. Max is potty trained and talking, in less than 3 weeks. Excuse me while I go dance for joy in the rain!
I feel like I've been writing about Max starting Preschool for ages. Wait. I have been! Since March! If you're new to Fickle Feline, you may not understand why Max starting Preschool is such a big deal for me. It's a big deal because Max is Autistic. He will be 40 months old on August 23rd. It's time for him to finally move up into the room that all of the other kids move to at 30 months old.
We've waited to move him for a lot of reasons. The daycare changed ownership in the Spring, so we had to get the new owners up to speed on all that is Max. Then there were new teachers hired for the Preschool room, so they had to get settled in before we threw dealing with Max at them. Of course, it also took some convincing of all parties involved that Max was ready, that in fact, he was bored to tears in the Toddler room. I'll admit to fighting an internal battle about this move. It broke my heart on a monthly basis to read the Toddler Newsletter with farewells to other kids in the Toddler room who were moving up as Max stayed behind. The kids around him kept getting younger and younger, and as he grew, he literally towered over them on the playground. I tried to keep what was best for Max in focus, and not let my desire for him to be "just like the other kids" (because he's not), override doing what was right for him, but I struggled.
But it's finally time. He's ready. There will certainly be challenges. The biggest hurdle will be transitioning him back into daycare after having him out for the past 3 weeks - one week for potty training, and 2 weeks for an intensive therapy block of Therapeutic Listening, Music Camp and IBI (Autism) therapy at blueballoon. We've seen amazing progress in this past month, including Max getting potty training down faster than any neurotypical kid I've ever met, increased requesting, and a slew of new words. That doesn't mean it is going to be easy for him to go back to daycare (it won't be). And it certainly doesn't mean that moving into the Preschool room will be a cake walk. It's going to be hard on him.
To help Max through this big change, we're bringing in his IBI therapists from blueballoon for 3 solid days to make sure he feels secure through the transition, that his needs are looked after, and that the staff is trained in how to work with Max and 100% comfortable in handling his challenging behaviour. For the most part he is a lovely well-behaved little boy, but on his "off" days he can be quite something to manage if you've never dealt with him before. It will hit our wallets pretty hard to pay for his therapists to help him transition, but making sure we get it right the first time is imperative, so it's worth it.
And of course, like every other mom on the first day of school (be it Preschool or Grade 12), I am asking myself the question "Where did my baby go?".About This Post
In an effort to lighten the f*ck up, I thought I'd write about one of my favourite topics: boobs. What's not to like about boobs? They are beautiful, soft, curvy, multi-purpose, and fun! Scott hipped me to a new site this week - Why Mommy Drinks Rum (very funny), where I was directed toward my new favourite site, Boob Emancipation. All I can say is "thanks for sharing ladies!". Scott thinks that Why Mommy Drinks Rum looks like Gianna Michaels (an adult film star), except with smaller breasts. This led to all sorts of interesting google searches, conversations and looks of shocked amazement (me not him). I highly recommend you do any internet research regarding Ms.Michaels after your kiddos go to bed, and certainly from home. You can thank me later.
Max is half way through his first intensive block at blueballoon. He starts his day with Therapeutic Listening, has a morning of Music Camp, and then an afternoon of IBI therapy. No nap unless he sneaks one in during his car ride to and fro. It's hard on him. It's hard on us. I really believe that he is going to come out the other side of this with a tonne of progress. But damn, it's a roller coaster. Today he sang "Twinkle Twinkle Little Star" in its entirety. Then he came home and threw a king hell tantrum that left me exhausted, and the entire family super stressed out. When Scott got home, Max walked into the bathroom, tried to pull down his underwear on his own, then sat on his potty, and peed. My baby boy is working so hard, he blows me away. I can't wait to see the progress that is bubbling below the surface. I know this is all worth it, we just have to keep the faith. I believe in Max, we are going to get him through this.
It was inevitable. I could put it off no longer. So once the kids went to bed, I strapped the sisters into my über sports bra, put on my workout gear, laced up my sneaks, and headed to the *gasp* gym. I've been thinking about it for a while, putting it off, finding excuses why I couldn't go (I'm tired, I had a long day, I don't want to), but the time had come.
I entered into the gym, punched in my client number into the keypad and my picture came up with a bit "ALERT" warning in red, with a picture of a red stoplight. Wow. I knew it had been a while since I'd been there, but COME ON! That is completely unnecessary humiliation. Geez...way to make a girl feel self-conscious! Turns out there is something messed up with the billing and I'll need to sort that out with the gym manager tomorrow. I talked the girl at the front desk into letting me workout anyway by telling her "you have no idea what it took for me to drag my ass in here". She looked at me, seeing that I clearly needed to be there, and let me enter.
I kept it pretty low key tonight. I did a half hour of cardio (walking on an incline and a fairly bright clip and the elliptical machine to work on my booty). I want to hit the gym 3 to 4 times a week, and I know I need to ease myself into it. I got home, feeling pleased with myself, and more relaxed than I've felt in a while. I'm hoping that some regular exercise will help me sleep better, clear my head and get me toned up. As promised, I'm going to do my best to stay off the scale and judge my progress solely based on how my jeans fit and how I feel. We'll see how long I can resist!
I should probably be working, or sleeping, but instead Scott and I are hosting Alana and her boyfriend Jay. But you know what? It's good. We needed this. To just relax and laugh and share some Thai food with friends. They brought Max a cabasa and caxixi (they're musicians) and they brought me lots of wine...and Alana drew me an original piece of art too. Love it. Also, Alana brought me 4 used novels (one of which I have already read) that I am not allowed to give back to her. That's the good shit. Now, if I'm tired tomorrow, that's okay, because my soul got a little healing tonight. Plus, Alana and I got to talk calmly, peacefully, and professionally about our Autistic sons while Scott and Jay geeked out watching videos on Youtube, debated the merits of iTunes, and passionately argued about basketball. Now they are talking about glorified telephones and the digital era. Right now Alana is leaning on my shoulder with a full glass of wine...speaking of which, I need a top up.
Potty training damn near killed me. Seriously. Who knew it was such a nightmare (and so exhausting - as shown by Max's siesta on Sunday afternoon)? Well, everyone, actually. I was warned that it is tiring, completely stressful, will drive you to drink, and make you think terrible thoughts about your child. I still had no clue.
We're just shy of the 2 week mark - 13 days to be exact. I am proud to say that Max totally gets the peeing in the potty business. He has it down, pretty much. We take him every 20 to 25 minutes, he sits down on the singing potty, looks thoughtful, looks down, makes the magic happen and then smiles at me like he just laid a golden egg. Then I cheer, and give him a chip. Then he looks at me, pees a little more, and I give him another chip. Wait a minute...I think he's playing me. But who really cares? Point is, kid is peeing in the potty - woo hoo Max!
He still has a few accidents here and there, and pooping in the potty, well, let's not get crazy now. He's done it twice by accident, but prefers to soil his pull-up before we get him up in the morning. I can live with that. I know he'll get it soon enough. I told Scott the other day that a year from now, we could be diaper free (assuming Cameron potty trains around 2 years of age). Think of the bliss! No more diapers. No more spending the equivalent of great concert tickets on landfill waste. No more diaper pail. Hey, a girl can dream, right?
The older I get, the wiser my mother gets and the more I understand her. As I raise my own children, see them grow, picture them as teens, adults, parents themselves, I start to understand that Max and Cameron will always be my babies. Therefore, I must still be my Mother's baby. Perhaps this is obvious to most, but it wasn't to me. Not the intensity of it, the love and concern of it. I look at my children now and I know that no matter how old they are, they will always be my priority, they will always be at the front of my mind.
I write a lot about the pain I feel, the things I am working through in dealing with being the mother of an Autistic son. I have never stopped to think what it must feel like to be the mother of a woman with an Autistic son, or a grandmother of an Autistic grandson. I have no idea what that feels like. I imagine that there is quite a bit of sadness involved is seeing your own baby worry so much about her baby. Not only do you worry about how your child is coping, but you also grieve for your grandson. At least, that is what I am guessing.
My mother is such a source of strength for me. She gives me hope on days when I am at rock bottom. She tells me she believes in me. She slips me money to go get myself a new pair of shoes and makes me promise not to spend it on diapers. And she sings a message of hope and optimism that lifts me up and gives me strength to continue "fighting the good fight".
Mom, I get it. Thank you for being my mom and I know I will always be your baby.
For the first time since I was in university, I am working on Saturday mornings. I figure since I have to bring Max in for therapy, I might as well get some work done while I'm here. As my Saturday morning treat (because I feel if I have to work on the weekend, I certainly deserve something special) I go to Starbucks and get myself a latte and bagel with cream cheese. A bit pricey for my pocketbook, but I only hit Starbucks once a week, so it's manageable.
This morning, as I sipped my blessed lactose-free, no foam, vanilla latte and waited for my bagel and cream cheese, the barrista told me "sorry! we are out of cream cheese!". Sigh. I was too tired to get riled up about it, not that I would anyway, I mean, come on, it's just cream cheese. But I'd already paid... and the alternate toppings didn't seem very appealing. Bagel with butter it is. I didn't have it in me to ask for my 50 cents back, so I got my bagel and was ready to go when I was pleasantly suprised. The barrista handed me my 50 cents and a coupon for a free beverage. Huh. Colour me impressed Starbucks. The coupon stated "A cup should never be half empty. We apologize if your Starbucks experience was anything but wonderful. We want to know how we can make things better and always invite you to share your thoughts with us. The next time we see you, please enjoy a beverage, on us. We hope your next visit is better." And I hadn't even complained! Imagine if I had...maybe then I would have gotten 2 free drinks (kidding). Anyway, #Starbucks #Wellplayed. So nice to see a company figure out how to improve the customer experience.
It has been one year since Max was officially diagnosed with Autism. A year of progress. A year of pain. A year of hope. A year of grieving.
