helping max find the calm.

Today was day 2 of Max staying at home in the morning instead of going to daycare. While yesterday was tough (Max got up at 4:30am and was all over the place emotionally and behaviourally), today was much better. Max slept until 6:30am and seemed to like being home. He even rediscovered some of his favourite books and we didn't see the outbursts that have become part of his repertoire. Reports from his therapists were positive this afternoon as well. Max is participating in a music therapy camp this week, which is a nice break from his intensive therapy. He has a therapist with him to support him, but it is good to change up his schedule and give him opportunities to try new things.

Personally, I am finding myself exhausted both emotionally and physically (I'm sure Scott is feeling run a bit ragged too). There have been a lot of changes for us to manage lately, and we are all doing our best to get comfortable with new schedules, roles and most of all, just trying to support each other the best we can. While I'd never ask time to speed up or slow down, I am looking forward to life settling into some sort of groove where we can operate in more of a comfort zone, at least for a bit. I think we're doing all the right things to get there and it is just a matter of time and keeping at it. Now I just need to figure out how to squeeze a few more hours into the day so I can get my work done!

do the right thing.

After much discussion and careful consideration, we have decided to remove Max from daycare for the remainder of the summer. This is by no reflection a statement on what we think about the daycare (Cameron goes there and she is doing terrific). It just wasn't working for Max this year. Over the past month we have noticed a lot of regression into behaviours we haven't seen in a long time. Toileting problems, inconsistent sleep patterns, increased stims and screaming in frustration are only a few of the things we have been dealing with. While it is easy to get frustrated with Max, these behaviours are the only way he has to tell us he is upset.

As the person who will be doing most of the care giving for him over the next month, it is going to be a challenge, but he's my kid. The thought of him being lost and overwhelmed in a room where people really aren't trained in autism or equipped to help him breaks my heart. Part of me wishes that he were at a point that he could handle being in an unstructured daycare environment. But he isn't, and that's okay. He's only five. He's a beautiful, smart boy and it is our job as his parents to make sure we are doing the right thing for him. We want to provide him with a calm, consistent environment so that when he starts senior kindergarten he goes into it from a place of happiness. Perhaps it will be a good way for Max and me to reconnect as we get some Mommy-Max time.

dreams are today's answers to tomorrow's questions.

At five years of age, Max has never asked me a question. Not one. Imagine that for a minute. If you have ever spent time with a young child, you have inevitably experienced the endless barrage of "Why? What's that? Are we there yet?" and "Where are you going?". I didn't know that was what regular kids do until we had Cameron (who more than makes up for Max's lack of questions).

I'm not sure why it is that Max doesn't ask questions. My guess is that his main focus is to communicate what he needs and wants, which he is able to do for the most part. Because this is still a work in progress, questions aren't really all that important. A sign of his development is that he is starting to look at me inquisitively when he knows something is different. His expression says "What's going on mommy?" or "Where is the girl that greets me every day?". In my eyes, this is huge progress. It shows a shift in how he thinks.
There is a little girl named Sophie in Max's daycare who was also in his junior kindergarten class. He immediately recognized her on his first day. I saw a look of relief on his face that said "Oh, thank goodness, someone I know". Every morning, Sophie, jumps up when Max comes in and greets him. She goes over to the reading centre and reads with him and gives him high fives. It is very sweet. I think this may be his first friend. This past Friday, when I dropped Max off, she wasn't there. He looked at me as if to say "What's going on? Where is Sophie?". It was awesome and heartbreaking at the same time. It is wonderful that he has formed an attachment with a peer, but it made me sad to see him bummed out that she wasn't there. I put words to his emotions so that he can start to apply language to how he is feeling by saying "Where's Sophie? I'm sad she's not here". I gave him a hug and said goodbye, feeling really proud of Max and how he is handling this transition into daycare. Also, my son's a player and he's only five.

the honey badger strikes again.

When Cameron is sweet, she is the absolute sweetest little girl you ever did meet. Really and truly – sugar and spice and everything nice, rot your teeth sweet. But, she can also throw a king-hell-tantrum that would put any tantrum you have ever witnessed to shame. I’m not kidding – even Max (who I thought had the market cornered on meltdowns) stands back and looks impressed. As her screaming escalates, that look becomes incredulous, followed by concerned, and finally he turns to me as if to say “can you make her stop mom, this shit is getting old!”.

This week, for whatever reason, 2 out of 3 mornings Cameron has decided to have a tantrum just as we are attempting to leave the house. Shoes and socks go flying, she attempts to pinch and scratch anyone within reach, and she basically behaves like a little beast. It’s a lot of fun (right up there with a kick in the face). Since she recently moved up to the preschool room at daycare, her new teachers are not yet accustomed to Cameron “the honey badger” Carefoot. On Monday, as I unceremoniously dumped a screaming Cameron on the carpet and placed her shoes and socks next to her, the head teacher asked me “why is she upset?” I looked at her, paused and replied “because she is 2, and 2 year olds get upset sometimes. Let her work it out – she’ll be fine in 5 minutes, I promise”.

Rinse, repeat – today, same scenario. Again, the head teacher asked me “why is she upset?” I told her “she didn’t want to come here today. And she’s 2.” That wasn’t a good enough answer, so I was asked again “no, but why is she upset? They know why they are upset”. Sweet jesus on a trampoline. “Oh yeah – she didn’t want us to brush her teeth. And she’s 2”. I turned and left. As I walked to my car I got super pissed. This teacher works with 2 YEAR OLDS. She of all people should know that sometimes they just behave like little jerks and throw tantrums as a way of expressing their general displeasure with our economy, healthcare system, and lack of adequate public transit. I decided to speak with the daycare director, who is really awesome, so I figured she would at least humour me.

I poked my head in her office and asked her if she had a minute, and then gave her a run down of the situation. My basic request was that the teacher not look at me like I am the worse parent in the world, and that it probably didn’t help Cam calm down if her pacifier was unceremoniously ripped out of her mouth the moment she entered the classroom (no soo-soo rule in preschool). Also, the same question, every day was bordering on ridiculous and also I have a kid with Autism sitting in my car, and I really don’t need this. My point – Cameron is a penniless dwarf with zero control of her life – of course she is going to throw the odd tantrum to attempt to exert some control over her wee universe. That is why. The director said she would address it, and that she would ensure I no longer get looked at like I’m a dirtbag mom and asked why my 2 year old is acting like a 2 year old. Though I fully expect that from now on I will be flipped the bird as I exit. I’m okay with that. As long as they don’t teach Cameron how to do it.

cam's daycare pictures.

Cam's school pictures came home yesterday.  How do I pick just one?  She really should be in the dictionary under "imp".  Also, she should be the president of the "good thing she's cute" club while she's at it.  Thank goodness they got that friggin' pacifier out of her mouth! 

A few nights ago, Scott was getting Cameron into her pajamas, and when he zipped up the front he must have nipped her belly or something, because she let out a scream that would make you think she had been mortally wounded.  Upon further examination, she had barely a scratch on her tummy and was just fine.  Not so in her mind.  She yelled "daddy go away! you hurt me! I don't like you anymore!".  Wow. 

Having been told to go away, Scott followed her instructions and came downstairs to eat dinner with me.  She continued to moan and groan upstairs muttering things like "you hurted me daddy! I don't like you! my tummy has an ow-ey!".  We sat at the dinner table smirking at each other over our pasta, trying not to laugh at how indignant she was.  Finally she came downstairs and stood in the hallway glaring at us.  With one last salvo she had us in hysterics "daddy, I don't like you! mommy I don't like you either! I don't like either of you!!!".  I almost fell out of my chair I was laughing so hard.  Cam, ever the entertainer, also had a hard time staying mad because she is always trying to get a laugh out anyone who will listen and she didn't understand that this time, the joke was at her expense.  I swear this girl is 2 going on 13. 

Here are her last set of daycare photos, taken a year and a half ago. Where'd my baby go?

jk is a-okay. i think.

Today was day #2 of Junior Kindergarten and Max's last day of day care.  That's a lot of change for a little boy (and his mom).   Max is doing really well, all things considered (and I'm hanging in - thanks for asking).  Once again, I am blown away by "Team Max" - current members and new members alike.  Max's resource consultant, Liz, whipped together a social story ("Max's New School") - with pictures of every aspect of his day and all of his teachers.  She did this yesterday afternoon and delivered it to his daycare so I would have it for him that night.  Simply amazing.

Max's favourite therapist, Sarah, accompanied Max on his second jk visit today.  He was THRILLED to see her, and I was relieved knowing she was there to help him cope with this new experience.  She was also able to give Max's EA the 411 on all things "Max" (including how to deal with the huge meltdown he had for the first 45 minutes).  While I know it will take Max several weeks to settle in, I really think he is going to love it once he learns the routine and gets familiar with everyone.  Sarah will be with him for the first hour tomorrow, and next week if he needs it.  I couldn't ask more of his teachers and his EA's - they are all working really hard to make this a positive experience for everyone.

Another hard part about all of this is that Max is no longer attending daycare (today was his last day).  He really loved it there, and his teachers Eva and Nicky were a key part of that.  When Super Bumpa picked Max up today Eva wouldn't let Max go until she gave him a big hug.  And then Max wouldn't let go of her when it was time to leave.  As a parent you hope that the people caring for your children will at the very least like your kids and be nice of them.  When they love your kids, that is magic.  We are blessed to have found a place for Max where he was embraced and accepted, not only by his teachers, but all of the staff and his classmates too.  Cameron still attends this daycare so we have promised to bring Max back for visits so Eva doesn't go into hug withdrawal.

The hardest part for me in all of this is seeing Max through the eyes of people who don't know him yet, who haven't fallen in love with him.  They don't yet understand that even though he doesn't have the vocabulary of his peers and needs a lot of support, he is funny and charming and super smart.  He takes so much in with those big blue eyes, and he looks right into your soul when he locks his gaze with yours.  I am looking forward to watching his new teachers get to know Max.  I doubt it will be long before he has them under his spell.

How to Choose a Daycare For a Child With Autism.

I consider myself an expert on selecting a daycare for a child with Autism. Specifically because Max, who is turning 4 years old in one short month, is now entering his fourth daycare in three years. Hmmm...perhaps what I am actually an expert in is how not to pick a daycare for a child with Autism. If you are interested in the background on Max's daycare saga, I have written about our traumatic adventures here and here. I want to point out that his last daycare was quite good until the ownership changed last spring. Since then the staff turnover has been brutal so I have not only removed Max, but Cameron as well.

It took a few months to find the right childcare setting for Max. It needed to have "integrated spaces" available (meaning it was a centre that Halton Region was working with and had Resource Consultants already in the facility). It needed to be a place that was open to having a child with Autism in its care and was willing to work with us to make it a successful experience for Max. It needed to have a great playground as Max LOVES to be outside. And most important, I needed to know that he would be safe and treated respectfully. For now, Max is only attending two mornings a week. His main IBI therapist, Nicole, has been supporting him for the past month, and helping him learn the routines of the room, and providing support to the teachers so that they understand what expectations they can place on Max. He has a new Resource Consultant at this centre (welcome Liz!), and the centre has received funding from Halton Region for an extra support person in the room when Max is there. As you can imagine having a child with Autism in the room is extra work. This is a very special centre and the teachers are phenomenal to welcome Max so openly.
Max's Resource Consultant took a bunch of photos of Max so that when a transition is coming up, his teachers can show him a picture of what is coming to support their verbal prompt. His receptive language is very strong so he understands what is being said to him, but the photos will help him prepare himself mentally so that it isn't so hard for him to actually follow through with it.
Max has trouble with understanding that when his teachers say "it's time to go outside" that this doesn't actually mean that they are going to open the door and allow all of the children to barrel down the stairs into the great wide open. It's all the in between steps that frustrate him (this centre is quite large, so there are more doors, stairs, waiting as children are counted, and that's all before they have even reached the cloak room to get their coats on!). Add to that when they are coming back in, they are told it's "time for lunch" when in fact, they have to go into the cloak room, go upstairs, wash their hands, and sit for circle, all before they get to eat. I'd find that hard too if I'd been told I was going to get to be fed!
The good news is that the kids in this room are fantastic (one little boy in particular seems to have decided that he is going to be Max's buddy through thick and thin). Max is drinking from a straw at daycare, helping set the tables for lunch, and has even been successful at toileting in his new room. I'm thrilled that he is getting this experience to be social with children his own age who can model appropriate behaviours for him. But I'm over the moon that he is getting the chance to be a kid and have fun.

Back To Work: 21 Days & Counting.

I'm back to work in 21 days. I suppose I could just say 3 weeks, but that seems too quick for me. Don't get me wrong, I am ready to get back to working full time, really, really ready. But I have a lot to do between now and then to get everything lined up so my family doesn't fall apart once our days get a lot fuller.

Part of the transition is getting Cameron used to daycare. We lucked out and a spot opened up for her at Max's daycare. Good thing too because I didn't bother getting her on the wait list anywhere else. I didn't have the emotional energy to deal with yet another childcare centre, and I just had faith that it would all work out. I mean, something has to go our way now and again, right?
Since today was Cam's first day, I opted to just visit with her and not leave her. Everyone was outside when we got there, so I plopped her in the sandbox and chatted with her new teachers. Cameron, ever the lady, promptly took the other child's shovel and pail away from him. I guess after months of having Max take her toys away from her, she figured it was payback time. Max was also outside in the Toddler playground during my visit, and he wasn't quite sure what to make of the fact that I was in the Baby playground.

Tomorrow will be the true test as I'm going to leave Cameron (gasp) and go run errands for a few hours. I suspect after tearing my heart out with her wails of desperation upon my leaving she'll be just fine. In fact, I'm willing to bet she'll be all smiles until I return, when she'll promptly turn on the waterworks for my benefit. That's my girl.