Just a bunch of Stuff

As always, it's been a busy few days for us and I have lots going on in my head.

Ryan

On Friday morning, I took Ryan to my family doctor to get a referral to Dr. Morgan, a pediatrician in our area who specializes in children with autism. I could not believe how well this appointment went. 

• It was pouring rain on the way there, and it stopped just as we arrived and walked to the building.
• Ryan, who is usually terrified of elevators, only shivered a little on the way up. He also, adorably, grabbed a stranger's hand.  Luckily, that stranger was a kind, pregnant lady who thought he was precious and let him hold her hand the whole way up, while reassuring him that he was safe.
• There was no wait to see the doctor. This was a miracle. Her office is usually about 1.5 hours behind.  Somehow, we had the last appointment of the day (they only do half-days on Friday), and they took us right in. We waited in the examining room for about 5 minutes.
• Ryan wasn't at all afraid of her when she came in. He usually freaks out as soon as he sees the doctor's white coat. On the contrary, he was all smiles and very vocal.  
• I told the doctor why we came, asked for the referral, explained why we needed it, and she said, "I don't think Dr. Morgan's taking new patients, but we'll push a little bit. I'm sure she'll make an exception for you."
• She listened to Ryan's chest with the stethoscope while he sat on my lap, and he was completely calm. He even tapped on the chest piece, and she thought it was cute, like he was tapping along with his heartbeat.
• And that was it. We left, with the knowledge the referral will be made for us. Ryan was once again only mildly agitated on the elevator ride down, and a kind, elderly lady talked him through the experience the way I would do. Strangers are so unexpectedly supportive sometimes. <3

On Friday afternoon, after a nice lunch break and some playtime at home, I took Ryan to the John McGivney Children's Centre to see the physiotherapist who assessed him at JK. She had recommended we get some therapeutic inserts for his shoes to help correct his flat feet and low foot tone (my other kids had that issue, too, but it was treated and resolved at a much younger age). Thankfully, that appointment went well, too.

• Ryan enjoyed the spacious and toy-filled Family Waiting Room. He especially liked the table with built-in spinning gears.
• He was a little nervous when we went into the PT room and sat on a treatment bench, but settled when L. talked to him soothingly and assured him we were just going to play with his shoes and look at his feet.
• We tried a few pairs, but finally found some inserts that fit his shoes.
• We struggled to remove the factory inserts from his shoes, and discovered a pile of sand hidden underneath in the process.
• She teased Ryan about his sweaty feet. (Again, all my kids have this. They inherited it from Daddy.)
• We got the therapeutic inserts in and had him walk around a bit to try them out. He was unsure at first, and walking kind of awkwardly, so she brought out a ball for him to kick and chase. He soon forgot the weird sensation and was walking and running in a way that pleased the PT.
• We had to take an elevator upstairs and pay for the inserts. The PT saw Ryan's hesitation and talked him through it, encouraging him to pay attention and press the buttons for us.  She also let him hold her hand, so he had one hand in each of ours.  I see now that he feels more secure in the elevator when both of his hands are being held. He only trembled and whined a little on the way back down. 

Andrea

Andrea is starting to get a lot of pleasure out of having fun with Ryan.  She spends much of her time trying to make him giggle with tickles and silly actions.  This morning, they were playing together in the boys' room. Ryan climbed down from the bed and plunked himself in her lap.  She loved it. I walked in to find Ryan giggling and cuddling with his big sister.  I can't put into words what a heartwarming sight that was for me.  I hope this special bond they are forming will last a lifetime.  I can tell Ryan is starting to regard her as someone he can trust as a helper and a friend.

Andrea is maturing in other ways, too. Physically, she is only about 2 inches shorter and 15 pounds lighter than me! The girl just turned 9 in July! Hello, early bloomer! Eek!  She is wearing size 6-8 shoes (depending on the style).  I had to take her clothes shopping today because almost nothing in her closet fit anymore.  And what a headache that was! Andrea was incredibly patient, and I was incredibly stressed out.  This girl doesn't fit in kids' sizes anymore.  So, we had to move into the adult department.  Yes, my 9-year-old is wearing ladies' size small.  Well, sort of.  We have the problem of shirts being too low-cut for a little girl and sleeves being too long, but she can barely squeeze into kids' XL. As for pants, her waist fits into ladies' small but her legs are just a little too short for them. Arrghh. Could this poor girl be any harder to fit?! We ended up with 3 pairs of stretchy pants and one sweater, plus 2 pairs of ladies' small pajamas (again, tops a bit low, but hey, it's just pj's for home). Oh, and one more right-of-passage purchase: yes, it's time for training bras.   However, again, I had to get something from the petite women's section.  Lord, help me.  When I got home, I went online and found 3 more tops from Old Navy that I think will work for her and also pulled out some training bras I had purchased a few months ago which, miraculously, appear to fit her for now.

I hate clothes shopping.  Especially when I don't know what size to get.  And even more especially when my daughter's body can't decide whether it wants to be juvenile or adult. ;p

P.S. Please don't mention to Andrea that I talked about her clothes sizes/shopping and training bras on here. She would be mortified.

Kevin

Oh, my Kevin . . . 

If you've kept up with my recent Facebook posts, you'll know he's really struggled this week with his autism and his identity and how it all fits together.

The irony is that the day this all came pouring out of him, I'd had a morning meeting with his ABA Facilitator who said his progress with his emotional regulation programs has been amazing, and that his goals are almost achieved, even though he's still got over a month left in his treatment time. And up to that morning, I totally agreed with her. The combination of his increasing maturity/self-awareness, medication, and the programs appears to have helped him tremendously over the past month.  But by that evening, I was cursing our ABA Facilitator. She totally jinxed us that morning with her effusive praise of Kevin's progress. Later that evening, it all went to hell, leading me to post this status on Facebook (I put it here to remind me not to take progress for granted, and to appreciate Kevin's internal conflicts):

Kevin and I are having a rough evening. After hours of arguing with/debating with/cajoling him about not following his electronics-use guidelines, he broke down and asked sadly, tearfully, "Why do I have to do all these programs? Why can't I just be like other kids? Other kids don't have to do this stuff! I want to be normal!"

Talk about a kick in the emotional gut.

I pointed out how all of this is to help him, and emphasized the great progress he's made the past few months, but still ...

He's right. It's NOT fair. I hate these programs, too. I hate that my little boy is unhappy and wants to be like "a normal kid".

F-you, autism.
It's an f-you, autism, kinda night.

Unfortunately, he continued on with this theme for a few days in a row.  It was so emotionally draining . . . for both of us!  He would say things like, "But I just want to be a normal kid," and "None of my friends have to do this!" This one just about broke my heart: "But I'm going to try and be like other kids. I promise!  I will only play video games a little bit each day. Then I won't need a program."

Oh, Kevin . . . I don't want you to be like other kids. I want you to be the best and happiest YOU that you can be.  

Because Kevin can be amazing: so funny, so creative, so smart.  When he has a great day, he lights up. Like yesterday, he had an awesome day at school. His teacher even wrote a note in his agenda about what a great day he had.  He continues to live up to his nickname of Mr. Math, doing work ahead of his grade level. He's also an excellent reader, and as much as I hate to admit it, it's from reading things on his video games and game videos.  He also has a great sense of comedic timing. After I told Rod about Kevin telling his principal that he had to ride to school with no seat-belt on Friday (it broke as we left home), and how embarrassed I was, Kevin shook his head and solemnly lowered it, intoning, "The SHAME." We howled with laughter! (FYI, Kevin got this line from a Pokemon episode we watched earlier in the week.) ;)

Oh, and one from just now: Kevin says, "I have a plan up my sleeve." As he is currently shirtless, Daddy points out, "You don't have any sleeves." Kevin responds, "Well, then I have a plan up my shorts!" ;)

Kevin is starting to interact more with Ryan, too.  I think he's following Andrea's lead.  He's not as hands-on, but he sometimes talks to Ryan, and he often makes suggestions as to why Ryan's laughing, crying, or what he might need or be thinking.  It's great that he's trying to relate to someone else's feelings.

***

Okay, so I guess that's enough for now.  There's always more on my mind, but this is just some of the stuff that's come up over the past few days.  I'll probably think of something else I wanted to talk about as soon as I finish posting this!   

Intentional Communication?

Around 4 PM, Ryan was standing in front of the fridge/microwave area and fussing.

I asked, "What do you want?" and he signed, "More." 

I opened the fridge and asked, "Are you hungry?"

He leaned into the fridge and signed, "More." 

I gestured into the fridge and said, "Show me what you want." 

He reached in and grabbed a Mott's Fruitsations off the shelf! 

After I opened it, he gobbled it all up, and signed for "more." Since it was getting close to dinner, I offered him milk in a cup instead. He did a little happy-flappy dance while I got that ready, then gulped it down, too. Then he sauntered off to play. He was done.

The only other times he's reached into the open fridge it's been to pull out random things like condiments, and he played with the containers. He's never reached in and pulled out one of the few things he will eat.

I want to believe this was intentional communication. That would be very exciting!

Ryan's First FULL day of Junior Kindergarten

Ryan got to attend junior kindergarten for a full day today, which was as it should be. Of course, I didn't know that was going to happen for sure until I actually dropped him off at school this morning. But I had brought him in equipped for a full day.

Anyway, back to the story: Ryan had a late night last night. I'm not sure why, but he didn't go to sleep till about 10:15 PM. He was woken up at about 7:15 AM by his brother and sister getting up and being their usual loud selves.  This meant that Ryan was in a tired, so-so mood this morning.

When we went to get in the van this morning, he planted his feet, squeezed my hand, and got the shakes again, just like he did on Monday.  Again, I spoke to him cheerfully and soothingly, and loaded him into the van with his siblings. He was okay after that.

This morning, Andrea and I held Ryan's hands and walked him over the to the fenced-in play area by his classroom door where all his classmates go in each morning.  We saw the float EA on the way in, and she was all smiles, greeting Ryan and assuring us it "went really well" last time, and "He'll have another good day." When we arrived at the classroom door, Ryan hesitated and started to cry/whine a bit.  The ECE and EAs coaxed him in, and encouraged him to take off his coat and put it on his hook. I showed and explained to them the new communication book Summit had put together for Summit/Lassaline/Home, and they were comfortable with it, saying they'd had similar arrangements for previous students.  Finally, one of the EAs posed the question: "Is Ryan staying all day today?" They all looked at each other, uncertain, and I replied, "I brought him in prepared for a full day." The ECE turned around and said, "Yes, Ryan's here for a full day." Ahh . . . the magic words!  I grinned, waved bye-bye to Ryan, gave him a kiss, and went off to my day off housecleaning, errands, and germ-fighting. I thought of him off and on during the day, got inexplicably anxious once or twice, but mostly the day went quickly.

When I went back at 2:45 to pick up Ryan, I saw his morning EA first, waiting with another child. She told me, "Ryan had a good day. The morning was a bit tough for him because he had lots of visitors! The physiotherapist, occupational therapist and someone else [speech therapist] from John McGivney [Children's Centre] came by to see him. It was a little too much for him. He got upset and a bit overstimulated. But his afternoon was much better." I replied, "Oh, I knew they were anxious to get in and see him soon for assessments, but I didn't know they were all coming this morning! Poor Ryan!" And she said, "Yes, he was pretty overstimulated and worn out by the time they left, but he's been fine this afternoon."

As I was waiting for Ryan to come out with his afternoon EA, who should spot me but Kevin's teacher, and she needed to give me "a little update."  Apparently, lunch time is still a problem. He's saying "mean things" to other kids and "lashing out" during lunch, even with the change of seats. However, she pointed out that there's been a drop in the amount of lunchtime supervision from 2 teachers for 2 classes to 2 teachers for 4 classes, and Kevin's not the only one having behavioral issues during lunchtime.  So, they decided to put together a little lunch group in the Back on Track room with Mrs. Cb. (Child-Youth Worker), so she can monitor them and also work with them on appropriate lunch-time social skills. Again, this isn't meant to be a long-term situation, but I don't object if it's helping them help Kevin.

Back to Ryan: I saw his afternoon EA guiding him through the open concept area doors toward me. As soon as she said, "Look who's here! There's Mom!" he started to whine. He waved hi, and I gave him a big hug when they made it over to me. I think he was anxious to leave because he didn't want to wait for Andrea and Kevin, and kept fussing and trying to head for the door. However, Ms. R. (afternoon EA) said he had a great afternoon, and explained that he might be tired and "off" because of the morning interruptions. She also said, "He's such a LOVE!" and how "sweet" he is and that he's "such a pleasure." I think Ryan's already got Ms. R. wrapped around his little finger. :)

Because it was his first full day, and I finally got some details (!), I will share some information from his Communication Book today:

My Morning
Things I played with/worked on: Did some physical activity in the gym. Also had some speech therapy.
Things I had difficulty with: Coming back to the classroom after these activities was difficult.
[No kidding. More strangers, testing his limits, making him tired, even more transitions. Duh.]
I had fun with: He enjoyed relaxing at the Library Center and rocking in the rocking chair.
[Library Center? He's usually not a fan of books. But we know he loves rocking chairs!]

Lunch/Snack: Ryan ate very well, but he didn't finish all of the oatmeal.

My Afternoon
Things I played with/worked on: Ryan enjoyed the peg board and play-doh.
[He does peg board at Summit, and has recently been enjoying Play Doh there, too. The activities probably felt familiar and comfortable.]
Things I had difficulty with: N/A. Happy mood.
[Couldn't ask for better in this department. ;) ]
I had fun with: bouncing on the exercise ball.
[He loves bouncing on the kids' exercise balls at home. I pull them out as reinforcement/a fun-relaxing toy for Thursday home programming. I'm so happy they have one he can use at Lassaline. Ditto for the rocking chair.]

Comments: [time and contents of diaper changes noted]

"Ryan did extremely well today adjusting to our classroom environment.  He is a pleasure and delight to have with us." --Mrs. C. (his JK teacher)

***

I would say for his first full day, that's pretty darn successful. No meltdowns, no phone calls, and a fairly content (if somewhat tired and stimmy) boy at home this evening. I'm a happy mommy.  Now let's hope we can keep this transition flowing as smoothly as possible for everyone. :)

(I took the photo, above, in the car on Monday while we were waiting to pick up Andrea and Kevin. Ryan was happily playing with his Slinky after his first day of school. I don't know why, but this photo feels kind of symbolic . . . Mommy always watching over him, making sure he's happy. He might not ever notice I'm there, and I'm constantly looking out for his best interests, but I always will be.)

Ryan's First Day of Junior Kindergarten

I've decided to do this entry in two parts, before and after Ryan's school day, because there's so many impressions I want to record now, and I'm sure I'll have plenty to say when I've found out how his (half) day went, too.

Part I: Morning and Drop-off
This morning, Ryan's mood was so-so from the moment he woke up.  He wasn't really upset, but there were occasional whiny stretches. He ate and got dressed okay (some protesting), but it wasn't anything unusual.  I think he sensed something was up, though.  Andrea and Kevin were both a bit hyper, and Andrea was giving Ryan lots of attention, and kept saying things like, "You're going to Lassaline today! You're going to JK! Are you excited?"   To me, Andrea confided a few times, "I'm worried about Ryan. Will he be okay? What if he cries?" Oh, my little Mommy #2. I explained that although I shared her concerns, I know they have a good team to look after him. I also pointed out that she will probably be able to go see him during morning recess.

Anyways, I was doing okay until we went to go out to the van to leave. Ryan was holding my hand, and he planted his feet a bit, and started to tremble a little. He also had an iron grip on my hand. Oh, boy, I thought, He knows something big is happening today. So, as I loaded him into the van, I took a deep breath and chatted cheerily to him about how much fun he was going to have at JK today.

When we arrived at the school, I found a parking spot out back. Andrea decided to walk with Ryan and I to the front of the school.   I took the opportunity to get a few first-day-of-school pictures away from the crowd of arriving parents and kids. (Kevin didn't feel like waiting. He went to his play area.)

Andrea: "Welcome to Lassaline, Ryan! It'll be fun!"

Ryan: "But I don't get it. Why do I have to go HERE?!"
Andrea: "Relax . . . Take a deep breath . . . It'll be just fine."

Andrea: "C'mon, Buddy, it's time to go in!"

Ryan: "I'M NOT SO SURE ABOUT THIS . . . !"

Anyway, we walked around to the front of the building, with Ryan holding my hand on one side and Andrea's on the other. Andrea said, "He's got a death-grip on me!" I think he felt a little more secure flanked by his mommy and big sister.  However, he did fine when we parted ways with Andrea by the front entrance. He looked a bit confused but waved bye-bye to her when she waved good-bye to him.

Then, Ryan and I went into the main entrance of the school. They had quite the welcoming committee waiting for us by the front office! There were two EAs (his morning EA and the float EA), a representative from one of the board's Spec. Ed. teams, and the principal. They all introduced themselves (I'm so bad with names, especially in high-stress situations, but I do know the principal already) and said hello to Ryan.  Of course, we got the usual, "Oh, he has such beautiful eyes!" Then, they invited me back to the classroom to see the teachers and help Ryan get his things settled.

After we entered the coatroom in his class, the teachers came in to say hi. When we showed Ryan where to hang up his bag and encouraged him to take off his coat and hang it on his hook, then he got a kind of scared again.  He got confused and needed some assistance, and he was crying a little bit. But when Mrs. Cota (his teacher) started talking to him, he went right over and cuddled against her, and his whining settled a bit. Aww . . . I thought this was a positive moment to take my leave. The EA said I could pick him up around 11:30 today at the office (remember, he's only doing a half day today). So, we waved bye-bye to each other and the principal walked me out.

I think the principal could tell I was barely holding it together because she kept saying, "Call me if you need anything . . . If you want to check in you can . . . Call me if you have any concerns . . ." And it was the look of kindness and empathy in her eyes that almost made me start bawling as we walked down the hallway.

Anyway, I am proud to say, I managed to hold it together. I got choked up, but no tears.  And overall, Ryan did pretty well, too.  I mean, he whines and cries some mornings when he gets dropped off at Summit, so I'd say he did pretty well for this big transition morning.

As a treat/reward for myself, I made a run to Timmy's and got myself a pumpkin spice muffin and a pumpkin spice tea.  The muffin was fairly yummy (I liked the decadent filling),and the tea is making the whole house smell awesome. :)

Now, I just have to get through the next hour and 15 minutes (but who's counting?) until I can go pick him up and hear how he did. 

I'll admit, the phone rang a few minutes ago, and I immediately thought, "Oh, no, it's the school. What's wrong?!" But thank goodness for caller ID. It was just the dentist office. ;) I'll need to get over this jumping-every-time-the-phone-rings thing quickly.

Part II: Pick-up

When I went to pick up Ryan, the principal was manning the secretary's desk. She said, "It went well."  Then, as I was sitting on a bench waiting for them to come out with Ryan, she said, "That was really hard on you."  I kind of laughed in embarrassment and said, "Was it that obvious?" but she smiled kindly and said, "It's always hard."

A minute or two later, Ryan came out with his morning EA.  They were playing peek-a-boo through the door at me.  Ryan was half giggling and half whining like he usually does when someone's trying to cheer him up.  When he came out to me, he walked right into my arms and snuggled in for a big cuddle!  The EA acknowledged, "He definitely enjoys his snuggles!" She didn't have to much to say except that it "went well" and he'd just finished his milk.  She also mentioned that he'd folded his hands and put them up by his face, and asked if that meant he was tired.  (No, I've never seen him do that.) I thought it might be a different version of his "more" sign, but they thought he seemed kind of tired. Whatever.

So, I asked them (another lady had come out with her--maybe another EA?) if he was going to be doing a full day on Wednesday. They looked at each other and hesitated.  The principal had come over, too, and she glanced at them, then asked, "Are you coming back later to pick up the kids? If so, we'll talk as a team and have an answer for you by then." Okay, fine, so I guess I'll find out later.

Ryan waved bye-bye to everyone and we went out to the van.  He got a bit whiny and shaky on the way. I think it's because none of this fits his usual schedule. First he's brought to this new place, stays there for a few hours, then leaves with mom at lunchtime.  Hopefully, the new routine (with FULL days) will be more familiar, and less upsetting, as the weeks go by. 

As we were walking to the van, I stopped and snapped a post-first-day picture of Ryan in front of the school and the little grass patch with the school logo. The picture captures his mood pretty well: still-not-sure-about-all-this.

And neither is Mommy. I have so many questions. Why are they hesitating about full days? That was the original plan. What is their definition of "it went well"? Did Ryan cry a lot?  Did he try to do some of the classroom activities?  Did he eat all of his snack?  What did he think of the other kids? What did they think of Ryan? Did he go out for morning recess?  What did he do during recess?  Did he have any diaper changes? Were there any issues with doing the diaper changes at school? Did he stay in the classroom the whole time? Did he need a sensory break? Did he have any happy/funny/cute moments? 

All I know is since we've come home, he's been his usual contented self, wandering around playing and getting into stuff. So, that's a good thing.

happy, relaxing, and having fun shaking Mommy's bottle of Crystal Light ;) 

Part III: Vagueness

After school, I didn't get any more answers. I chatted for a minute to the lady who will be Ryan's afternoon EA (whenever he's finally there for a full day!), but she had no answers for me. She got the principal for me, who was busy and flustered, and said she'd call me tomorrow. Again, she reassured me that "it went well."

This evening, we had parent and sibling groups at Summit Centre. Many of the staff were still there, and eager to hear about Ryan's day. I told them, "Here's what I was told: 'It went well.' I guess that's better than them saying it went badly." The look on their faces was priceless. They had the same reaction as me: "Well, isn't that informative!" LOL I also shocked Ryan's senior therapist when I told her he'd only been in  for a half day, and they were hesitating on his schedule for Wednesday.   She immediately said she would a) like to go in to observe and see if there any issues (if they will let her) and b) put together a communication book with pages that can go between Summit, home, and JK.  I told her how I had tried to bring in one of Summit's communication book pages to show the staff at Lassaline (but they were too busy), and she assured me she'd put something together for Wednesday for us in the hopes that they would be open to using such a thing.  I assured her they are, as we used something with Kevin in previous years, but this would be even better, with a more streamlined checklist and daily info.

So, that was Day 1.  As with everything on this autism journey, we have a long, winding road ahead of us. ;)

Spinning Plates

This may seem like an odd title for a post, but that's the way I feel right now. I feel like one of those acts where the performer is trying to keep a bunch of plates on poles spinning at the same time and make sure they don't all come crashing down.

 

Thus, a forewarning: This blog post may be a bit rambling and all over the place as I try to touch on the various spinning plates in my mind right now.

 

In most cases, these are actually good things. I've gotten the ball rolling on a lot of issues on my long-term to-do list for myself and the kids.

 

Hmm, maybe it'll help if I break down the topic going by each child. I hope they will forgive me for putting all their personal business out there, but if Mommy doesn't share some of these thoughts piling up in her head, the pressure's going to cause an explosion.

 

Let's go oldest to youngest.

 

Andrea 



Something changed with Andrea the year she started school.  Until she was 4 years old, she always seemed like a very content, happy, outgoing child. Suddenly, she developed a lot of anxiety.  Every year since, this anxiety had grown exponentially.  It's the only issue the teachers ever have with her. She's intelligent, responsible, hard-working, reliable, kind, a good helper, and a good leader. However, I inevitably get the calls and the parent-teacher conferences about Andrea's anxiety in the classroom. The sudden breakdowns into tears.  The frustration.  The defeatist self-talk. 

It's not just at school, either.  Well, yes, there is the related breakdown during homework pretty much every night.  But she is also extremely sensitive. Any constructive criticism and she's upset.  If you talk about anything medical, she becomes a panicked hypochondriac.  If I even raise my voice slightly, use a stern tone, or be sarcastic, I'm "yelling" at her or "being mean" (and consequently, she's in tears).  She also panics over things that seem unreasonable to the rest of us. And when I say panics, I mean basically has an over-the-top-nervous-breakdown-type-reaction with raised, high-pitched voice, anger, tears, and she will not listen to reasonable suggestions for solutions.  In terms of the anger, in her panic state she lashes out at whoever may be nearby. Kevin usually takes the brunt of this.  He'll come to see what's going on and she'll start screaming, "Go away!" and trying to shove him or threaten him.  Does Kevin act the instigator sometimes? Yes.  But lately, he's actually been there genuinely trying to cheer her up or offer suggestions of the type we give him when he's upset. 

Andrea and I have had some serious talks lately about what's been troubling her.  Her focus seems to be school. She feels she is too shy and can't make friends (but she does have a best friend, and generally gets along well with others). She feels like she can't keep up with the class work and the teacher will be mad at her. She says she's the only one in her school who gets upset and cries so much. (None of these things are true, but I can't convince her of that.) I also know she's dealing with a lot at home. Being the older sister of two brothers on the autism spectrum must totally suck (although she does sometimes mention the positives, like getting to go to the Autism Ontario picnic). Occasionally she'll show her true feelings with an outburst like, "You treat Kevin like a king!" and "You love them [the boys] more than me!" and "You don't care about me!" and "You don't understand me!"

We're doing our best to help her.  She goes to the sibling group at Summit Centre each month, and she really enjoys this special gathering just for kids with brothers and sisters who have autism. We've also signed her up for a second round of Sibshops this fall. That's a sibling group put on by Autism Ontario that lasts about 8 weeks, one night a week.  We did that last winter and she got a lot out of it.  She thought it was really fun, too.

As for the school issue, we've tried to teach her some relaxation techniques and encouraged her to voice her concerns to her teacher. Unfortunately, she's too wound up and too afraid to speak to her teacher. All of Andrea's teachers have been kind.  We haven't had one yet that we've had a problem with, that we didn't like, or who didn't try to help Andrea with her school anxiety. It's on my to-do list to have a good chat with this year's teacher about what we can do for Andrea. But first . . .

I've finally taken action on getting some psychological help for Andrea.  Anxiety and anxiety-related disorders run in my family.  It's been on my to-do list for a few years now, and about 2 weeks ago, I finally called the Regional Children's Centre and put in a referral for Andrea.  They offer free, individual counselling services with a child psychologist, as well as group therapy sessions for children with high anxiety.  There is a waiting list, of course, but as Andrea's anxiety-related issues have continued to become more intense with each passing year, I'm glad I've at least got that in progress. 

Andrea's an early bloomer, too, so puberty is going to hit within the next year. I see the physical and emotional signs. And emotions are only going to get more wild with puberty.  Her ups and downs are so erratic right now, I've honestly had some concern about manic-depression or bi-polar.

Anyway, as I mentioned, Andrea and I have had some deep discussions lately and when I explained what anxiety is, and how it runs in our family, and how I've put in that referral for her, it was like a huge relief came over her.  I think it actually comforted her to know it has a name, she's not alone, and we're seeking help.

Kevin
Let's keep the mental health theme going, why don't we?

This summer, when Kevin came up for eligibility in the Thames Valley ABA services program again, the greatest need was once again in the area of emotional regulation.  Of course, it had to be the toughest issue to tackle. We tried this the last time he had services (over a year ago!) with no appreciable changes resulting.  Anyway, in the course of doing his assessments for this round of ABA intervention, the coordinators expressed a great deal of concern over Kevin's violent outbursts (hitting, throwing things, screaming) and his high level of crying and anxiety.

Consequently, they set us up to see a child psychiatrist at Maryvale. I know, Maryvale has a reputation for dealing with "bad kids" or "troubled teens." Let me dispel that myth now.  Please visit the Maryvale page for more information: http://www.maryvale.ca/ It is a wonderful community resource which helps children and teens with mental health issues on both an in-patient and outpatient basis.

Anyway, back to Kevin.  We had an assessment at Maryvale with Dr. Ahmad, a child psychiatrist, last week.  She was very kind and did her best to get Kevin to open up and talk to her.  I tried not to interfere too much except to prompt him for answers a few times and explain some things he said which she didn't quite understand.  Overall, she said his emotional regulation/behavioural issues are totally consistent with his autism diagnosis.  She was extremely supportive of the ABA therapy program we are currently doing with Thames Valley focusing on Kevin's emotional regulation.  She basically said she would have suggested the exact same strategies as them, so she's not going to interfere in that.  As for Kevin's anxiety, after looking at our family history, she offered medication if I was interested.  Yes, I was!  I had been debating the medication route for Kevin for some time, but to have the validation of a specialist made the decision much easier for me.  She decided to put him on Prozac, at a very tiny dose, once a day.  It is in liquid form, so it's easier for him to take.  We are very slowly increasing the dosage each week until he's up to a possibly 2.5 ml per day.  She said it will take about 4 weeks before we actually start seeing any effects, as the medication has to build up in his system.

So far, there have been no side effects.  If anything, we've already seen an increase in the times he's been thoughtful and helpful towards others, and a slight decrease in his negative behaviours.  He's also making great progress with his three ABA programs to help with emotional regulation.  Well, it's one ABA program with three target areas: waiting, tolerating "no", and following a schedule to decrease his time spent playing video games. In our baseline data, we found these were the three things that usually triggered his negative behaviour.  He has difficulty waiting for things he wants or things he wants to happen, so we are slowly increasing the time he has to wait and using different prompts and reinforcements to aid in that.  He is doing excellent; we're already up to waiting for 10 minutes (we started at just 3 seconds!).   For tolerating when he is told "No," he is also doing great.  We're up to Step 3, where he simply accepts the "no" and moves on to something else.  We started at him accepting "no" in exchange for something he might want even more.  Then we moved to accepting something equal to what he wanted.  Now, he's just working on accepting the "no."  Finally, and the toughest one, is decreasing his video game time.  The reason behind this is that it is well-documented that playing video games increases agitation and anxiety. However, since this is Kevin's "happiest thing" (in his words), we knew we couldn't completely eliminate video game time. The idea behind the program is to let him play for designated amounts of time, and schedule other activities in between video games.  It's good because the less time he plays, the less likely he'll get frustrated when the game doesn't go the way he wants; also, it encourages him to try new activities or at least spend time doing other activities he enjoys.  Right now, we're at a half-hour of video games with a ten-minute break for something else. Being back in school has really helped this program because he's not at home so much and busier with school-related things.

Speaking of school, it's not all roses, but he had a very good start. There was some anxiety, but he got the teacher Andrea had last year, who is a very kind lady and familiar with Kevin.  Still, on Friday, I got TWO calls from his teacher. Ugh. She had "some concerns" to discuss, which unfortunately, are things we've dealt with in the past.  Kevin has been helping himself to his classmates' lunches, snacks, and drinks again. He's so impulsive; he sees, he wants, he acts. He doesn't take the time to think of alternatives.  The teacher doesn't like to isolate him, but she suggested he sit at a separate desk for now to avoid temptation. I agreed. It's not a permanent move; he'll get to try eating at his own desk again soon.  He's also had a few incidents of lashing out at people who accidentally hurt him at recess or gym class, or bumped into him in the hall or coatroom. We just can't seem to get the idea of, "If they hurt me, they need to feel my pain," (his words) out of his brain. The difference between accident/on purpose is meaningless to him, and the concept of forgiveness is lost on him.

The second call was because Kevin took another child's agenda and hid it. Did we have it at home? No. Did Kevin know where it was? "No . . . I put it back on his desk." Um, nope. It ends up Kevin had put it in another student's desk. Probably the one closest to his. Kevin is all about selective hearing and shortcuts.

We're also struggling with him lashing out at Andrea at the end of the day.  They are both dismissed a bit early, so we can pick up Ryan on time.  Now that Andrea's in a new area of the school (junior), their coatrooms are separate and they don't come out together like last year.  Kevin has this obsession with "being first" and "beating Andrea." His teacher says he's agitated for about 15 minutes before his dismissal time, eyeing the clock, anxious to leave so he can get to mommy first.  On the days when he sees Andrea reach me first, he either shrieks and/or threatens to punch her.  We discussed a plan to get Andrea to meet Kevin like they did last year, so they can come out to me at the same time.  On Friday, although they came out the main doors together, Kevin still ran across the hallway yelling, "I'm first! I beat you!" Sigh.

But somehow, he still manages to win everyone over. Because he's so darn cute. And funny. And smart! He's got an explanation and a story for everything . . . of course.  His teacher just loves him and has nicknamed him "Mr. Math" because he is doing the work she's giving the grade 3s (he's in a split grade 2/3). She also says his literacy is excellent.  In terms of the way autism was diagnosed before the DSM-V came out, I think Kevin is definitely an Aspie (Asperger's Syndrome). Actually, Dr. Ahmad suggested we look into having Kevin re-assessed within the next year or two as he has changed quite a bit since his original diagnosis of Mild Autism about 3 years ago.

Ryan
Oh my little Ryan, always so much going on . . .

Let's start with the biggest event on the horizon: on Monday, Ryan starts junior kindergarten at H.J. Lassaline School!  It's the same school his sister and brother attend.  It is fully integrated. He will be attending full days on Monday and Wednesday this year, and will still be at Summit Centre for the other weekdays.

At least, that's the plan.  And plans can change. Here's a good example:

The other JK's started in a staggered entry from September 2 to September 8. We decided to wait for everything to settle down and everyone to get settled in before bringing Ryan into the classroom. That's why we chose September 22 for Ryan's start date. Well, I got a call on Friday afternoon from the Board's Spec. Ed. Coordinator telling me there have been changes at Lassaline. Two new teachers have been added to to the staff (good for the school), but that means that some of the children will be changing classes on Monday, so there are going to be some upset/re-adjusting JK/SK's in the room.  So, would we mind cutting down Ryan's first day to just until first recess? Or maybe lunch? What do we think?

Well, I think WE PURPOSELY DELAYED HIS ENTRY TO AVOID THIS. NOW HE'S GOING TO BE IN A CLASSROOM WITH AGITATED/ADJUSTING KIDS WHICH IS EXACTLY WHAT WE DIDN'T WANT. YOU ARE ALSO INTERRUPTING HIS FIRST FULL DAY AT SCHOOL. IT'S NOT GOING TO MAKE AN EFFING DIFFERENCE WHETHER HE'S THERE A FULL DAY OR NOT. 

I said, "I'd like him to stay at least until lunch."

Then, he asked, "What time are you thinking of bringing him in? It might be better if you brought him later in the morning."

Well, I think WE'VE PLANNED ALL ALONG TO DROP HIM OFF AT THE SAME TIME AS HIS SIBLINGS SO HE CAN BE WITH FAMILIAR PEOPLE AND I DON'T HAVE TO CONFUSE HIM BY MAKING TWO TRIPS.  ALSO, WOULDN'T IT BE MORE DISRUPTIVE FOR THE CLASS FOR ME TO BRING RYAN AND ALL HIS GEAR IN AND GET SETTLED ONCE CLASS IS IN PROGRESS?

I said, "I planned to bring him in when I drop off my other two children, before class starts."

He hesitated, but said, "Okay, I understand, since you're already there for the other two children."

[Picture me, mentally giving him the finger.]

Let's just say, I'm very much like my autistic boys in not adjusting well to unexpected changes of plans, especially in a situation that is already new and already extremely stressful. :p

But let's look at the positives of this. I know Ryan is getting a good teacher.  I know they are prepared for his arrival because we've had meetings, they've observed him, and Summit Centre and I have sent the teachers and students all kinds of things to help them understand autism and get to know Ryan. I know there will be an EA to focus on Ryan (one in the morning, one in the afternoon).  I know at least one of the EAs has worked with a severely autistic child for a few years and the other I know from seeing around the school, and she's met Ryan.  I know a person from the Board's Spec. Ed. team was at Summit on Friday to observe Ryan, and that same person will be spending the day with Ryan at Lassaline on Monday. She will make sure they have everything they require to meet his needs, and may start making recommendations for what his school program will look like (IEP).

I'll be honest: every time I really let myself think about Ryan starting junior kindergarten, I start to cry. It is terrifying! Parents are always nervous and excited and emotional when their little ones start school. But this is so much more. I want him to have this experience. I want him to have this opportunity. I want him to be surrounded by dozens of children his own age so he can learn and imitate and socialize and have fun. But at the same time, it's like putting a baby in a JK class.  [By the way, I cringe whenever Andrea or Kevin refers to Ryan as a baby, and I even hate it when my brain makes the comparison. I feel like we're underestimating his abilities or belittling him. I know we're not, it's just . . . Sigh.] He can't speak. He's in diapers. He can barely feed himself. He doesn't understand concepts like ABCs and 123s.  He can scribble, but he has no idea how to use a pencil for writing.  He is still learning how to learn. He can cry, but how will they know what's wrong? I'm his mom. I can usually figure it out because he's my little guy.  How will they be able to help him? Will they be able to teach him? Will the children be kind to him? ignore him? overwhelm him? or hopefully, love him? So many unknowns. 

Thank goodness he's still with Summit Centre for 3 days a week. That is my rock. That is my comfort. I guess that's why we did it this way.  I know Summit Staff will be there to support Ryan's transition 110%.  THEY know Ryan.  THEY know how he learns best. THEY know his strengths, his weaknesses, his motivations.  And they'll be there to help Lassaline get to know Ryan over the next year, too. Summit staff are so excited for Ryan's new journey. They keep reassuring me, "He's ready." Maybe it's just me who's not ready. It's so hard to let your little one go into the hands of strangers, and trust those people will love and care for them as they deserve to be loved and cared for.  Especially when that child has special needs, and does not have a voice of their own, and it is your responsibility to be their voice. But a big difference between Summit and Lassaline is how involved the parent can be.  Summit is all about parent involvement: I can walk in any time I want and ask to observe what they're doing with Ryan. In fact, it is mandatory to do that for at least 2 hours a month. On top of that, they're doing programming at home every Thursday. Not only do I get to watch and listen for the whole day, I'm also expected to do an hour of active parent coaching each Thursday. I love this. I know exactly what's going on with Ryan's programs, how he's progressing, and how his day has been.  I also get detailed, daily reports in his communication book from Summit.  On the other hand, Lassaline is a regular school where parents are discouraged from visiting the classroom (it's disruptive, and they want to foster independence in the children), and the teacher has 30 other little people to worry about, so communication is spotty and not particularly informative.  Not knowing what Ryan's day-to-day at Lassaline is going to be like will probably kill me. Or at least turn me grey.

Okay, deep breath. Stop thinking about Ryan starting JK and mention some other things.

In my last blog update (in July!), I mentioned Ryan's uncontrolled crying outbursts and the possibility of some medical investigations to try and sort out that situation. The good news is that the uncontrolled/unexplainable crying had decreased dramatically since the end of August. It still happens occasionally, but it has gotten much better.  [*knock wood*] We finally got in to see his regular pediatrician on September 3.  Again, the good news was, after a thorough examination, the doctor couldn't find any obvious causes for Ryan's distress. He's in perfect health (besides autism and developmental delays).  The doctor suggested it might be behavioural/psychological and likely related to autism (duh!).  So, the bad news is, we sill don't have any answers.  The next step--it's on my to-do list--is to try and get a referral from one of our doctors to see Dr. Morgan. She's a highly-recommended pediatrician who specializes in children with autism . . . but also has a long wait-list. I've heard she might make an exception for us considering our circumstances.  We'll see.

Ryan has so much he's working on right now in terms of programs that I don't know where to start. I'll mention a few highlights.  At Summit, they've started his toilet training program (yay!). He will sit on the potty for a few minutes about 4 times a day and has even peed a few times. :) This week we tried it on his Thursday at home for the first time. He didn't pee, but he cooperated well and didn't seem too fazed by the change from school to home.  He is also doing well on riding a tricycle at Summit. They have moved him from the smooth hallway indoors to the parking lot outside.  It stumped him at first because the uneven pavement took more effort, but yesterday his therapist said he took off and rode away like a pro! :) We are also noticing he is making a lot more sounds lately, like "deedee, tick, shh, mum, ch, oh, ga," etc.   I encourage and repeat every little sound he makes. He is doing great with his PECS, although he still almost always requests Ritz Bits cheese crackers. ;) We're at a point though where we've got two items on the picture board, one preferred and one not, and he usually picks the picture of the (preferred) item he wants and gives it to us.  His pointing gesture had improved dramatically, and when he's in the mood, I've seen him do song actions during circle time that he didn't do before.  So yes, there is always progress, but it's on Ryan's slow and steady timeline.  We have to be patient.

At home, Ryan is also working on an ABA program through Thames Valley. Ryan's program focuses on food expansion, since that's an area Summit hasn't focused on. His program, like Kevin's, has three target areas: watermelon, bread, and food play.  We chose to work on watermelon and bread because they are foods he showed an interest in this summer, and they are healthy (a fruit and a grain). The food play program is basically designed to expose Ryan to new scents and textures, and also activities that will get his mouth/tongue/teeth working together to help chew and swallow food properly. Ryan's food programs are going . . . meh.  We had a bunch of progress with watermelon until about 3 weeks ago when he caught a bad cold.  After the cold, he had a set-back, dropping from step 4 (eating tiny, thin slices of watermelon) to step 1 (totally puréed with me holding the spoon).  In the bread program, he was at step 2 (ingest a tiny piece of bread with pureed fruit on it) and dropped back to step 1 (lick pureed fruit off a piece of bread). Recently, he's been completely refusing both at Step 1.  :( We tweaked it a bit, and I have Andrea to be a cheerful food model for Ryan.  We've made it back up to step 2 with watermelon, but no luck with the bread.

For food play, Ryan usually cooperates with handling new foods and squishing them and smelling them.  The toughest part is trying to get him to imitate the oral motor activities (smack lips, stick out tongue, tap teeth together, blow bubbles, etc.). He doesn't understand what I'm asking him to do and usually gets really frustrated. There has been a little progress, though. I've seen him try to purse his lips and blow bubbles, and he also puts his hands on his cheeks sometimes when I do "fill your cheeks with air and pop with your hands." I'm trying to find ways to make it more fun. He's usually more interested when I can get Andrea and Kevin involved (they like making the silly faces), or when I use bubbles as a reinforcement (although that usually ends up becoming a session of him signing for "more" bubbles).

You've probably seen my complaints on Facebook about all the data I'm taking for Kevin and Ryan's programs. It is a bit insane. But I know if I'm dedicated, it will eventually make a difference. We are seeing a little progress in Ryan and lots of progress in Kevin.

Eye Doctor
I put this one at the bottom because it involves all 3 kids.  A few days ago, I finally took Kevin and Ryan for a follow-up to see Dr. Moussa, their eye specialist.  We last saw him 3 years ago!  I let it go because it's about that time that they received their autism diagnoses, so we've been focused on dealing with that, and I felt the eye doctor wasn't a priority. Neither of them had a significant eyesight issue at the time and haven't seemed to develop any issues to date. Anyhow, I figured it was way past time to see that doctor again, so when his office called to book a follow-up this time, I agreed.

I took all three kids because the appointment was right after I picked up Ryan from Summit.  They (doctor and assistant) examined Kevin first.  They said he has a slight prescription but does not need glasses. His eyesight is fine.  However, they did note he still has that weak left eye muscle, and the left eye occasionally turns. It doesn't bother him or affect his school work at all, so we decided not to proceed with any treatment. There are therapies, but they would NOT be covered, so if they're not necessary, then no thank-you. He'll see Kevin for a follow-up in 6 months to make sure no issues have developed in the meantime.

For Ryan, it was much the same.  Ryan has a slight prescription, but no need for glasses. His eyesight is good.  However, Ryan has issues with his eye contact and tracking (clearly related to autism).  They also have therapies for that. These therapies are also NOT covered.  So, we decided to book a follow-up appointment for Ryan in 6 months. Ryan's appointment will be special, though. The doctor has specifically-scheduled slots for his autistic patients which make sure the waiting room is quiet and there are minimal sensory distractions, so the patient is calm and focused as possible.  (Good idea: Ryan was obviously neither calm nor focused at this visit. But he hates doctors, in general. And elevators terrify him. We had to take one on the way up to the office.) Hmm . . . I mentioned to his secretary when we booked the follow-up that Ryan was moderate-severe autistic, but she didn't book a special appointment then. *Shrug*

Finally, I asked the doctor if he'd be willing to see Andrea as a patient.  It's something I probably should have done years ago. You should've seen the doctor's face when I said, "She's 9. No, she's never had an eye exam." However, she's never had any eye problems (no infections, no problems reading or seeing the board at school, etc.).  Actually, I just asked him because she wants to get an eye exam because she read about one in a book, and she thought it would be fun. I didn't tell him that, though. LOL So, Andrea will see Dr. Moussa with Kevin in January.

Overall
Between the kids and I, we've had 10 appointments in the last 17 days. Yeah, I'm kind of over it.  That doesn't even count school meetings and such. But like I said at the start of this post, it's all really things that needed to get done, or put into motion, and there's
still more to do. There's always more to do. 

I haven't even bothered to get into everything that's going on with me (don't worry, nothing major, female stuff, TMI). ;)

Just more appointments and paperwork and phone calls and research and therapies and so on . . . as per usual. ;)

***

So, the next big update will be about Ryan's first day of JK! EEK!

Ryan's Homework, Progress, and Issues



Today seemed a good day to do an update, as I had Ryan's monthly meeting with his senior therapist yesterday, and he did some amazing things today, but we've also got some problematic behaviours to sort through right now. All in all, there's lots going on in Mama's head today.

 

Let's start with the positives:

 

This morning, Ryan had some pleasant surprises for me during his homework time. First, when we were working on tracking a preferred object, I noticed his accuracy has improved drastically over the past month. What we were doing before was having him pick a reinforcement (he almost always chooses his Ritz Bits). Then, I would place 3 clear cups out, and put the item under one of the cups, clearly showing him which one. Next, I would move the cup one time and say, "Find the cracker." He was usually accurate with the clear cups, so we'd start with those, and if he got it right a few times in a row, we'd move on to the same thing but with solid (opaque) cups. Now, the solid cups have a sticker on one to help him identify which is the correct cup.  Even with the sticker, his accuracy was usually hit and miss. Here's a video from a few weeks ago of him tracking the cracker.

 

 

He's been doing so well with this the past week or so that I decided to skip the clear cups, and go straight to the opaque ones. Then, he was doing so well (not a single error in all of his trials) that I decided to turn the cup with the sticker, so he couldn't identify it by the sticker as I moved it.  He was simply tracking where I had put the cracker (remember which cup it was under, and follow it, then choose the proper cup when asked).  I was amazed that when I removed the visual prompt, he only had one incorrect choice the rest of the time we did the program!  I was so thrilled.  Only two weeks ago, his responses were inconsistent even at the clear-cup level. [I don't think I'm supposed to increase the difficulty of his programs like that, but when he's doing well, I can't wait to test him a little more. Sometimes, like today, I get pleasantly surprised!]

 

 

 

But what really floored me today was what happened when I was setting up his PECS program. For PECS, he is at Stage 2-3, where he is taking a picture and showing persistence in bringing it across a distance and handing it to someone to request the item in the picture.  Normally, we do a preference survey where I take things out of his reinforcement basket to see what he's interested in, and when he picks an item, we use only the picture for that one item on his Velcro PECS board.  I give him the card, then take the item and go across the room. If he wants the item, he has to pick up the PECS picture, bring it to me, and give it to me (again, he almost always picks Ritz Bits). Here's a video of PECS homework from a few weeks ago.

 

This morning was different because Ryan took the initiative, literally, into his own hands.  I was setting up the program. I hadn't even done the preference survey yet. I had several PECS on the PECS board which was sitting on Ryan's work table. I was over by my bed.  Ryan picked up the PECS board and pulled off each of the pictures, one by one, until he was holding "bubbles." Then he walked over to me by the bed, and he handed me the "bubbles" card.  It was so exciting! A spontaneous request! Of course, I immediately ran across the room and got the bubbles from his basket, blew him a bunch, and went crazy with descriptive praise. ("Ryan wanted bubbles! What a wonderful job you did asking for bubbles!")

But there's more.  When I did the preference survey, I had put three of the PECS back on the board. I asked Ryan, "Which one do you want to work for?" and instead of reaching into his basket, Ryan tapped the Ritz Bits picture on his PECS board. He has never done that.  We usually only work with one picture on the board. And here he was, clearly making a choice and request from one of three items.  Holy smokes!

He wasn't done surprising me yet.  In the middle of our PECS program, I was across the room with the crackers.  He had the crackers picture in his hand, and as he walked by the place where I had put some other random PECS on the floor (out of the way, I thought), he stopped.  He put down the crackers picture, picked up the "bubbles" picture, and brought THAT one to me.  He clearly stopped, changed his mind, and made a spontaneous decision that he wanted "bubbles" instead. Wow. Just wow.

On the other hand, we've had some challenges, lately, too:

You may have seen my Facebook posts lately about struggles regulating Ryan's sleep habits, or how he's had some pretty rough home therapy days over the past few months.  Well, it isn't just at home.  Ryan's been having a lot of rough days at Summit Centre, too.  The main problem is crying.  It is very loud, very angry, uncontrollable crying.  The odd thing about it is that it doesn't seem to be negatively affecting his programs.  He is still making progress, and his data shows he is doing consistently well on all his programs. This video I got of him at the Centre this week is a good example of that.  He is upset for an unknown reason, and crying, but he still pedals his little tricycle down the hallway with the effort and accuracy expected from him at this point in the program. [By the way, I was thrilled to see this; it's the first time I saw him ride a tricycle!]

At Summit Centre, they've been tracking Ryan's crying to see if they can find a pattern. There are none. They have tried every ABA and calming technique they can think of, but nothing seems to help him on a consistent basis. Something might work or a while, but then it suddenly stops working.  They've adjusted his programs, reinforcements, work locations, expectations, and the amount of demands placed on him; they've tried the Snoezelen room, rest breaks, more frequent play breaks, quiet rooms, pleasant sensory input, etc.  There simply seems to be no rhyme or reason behind these outbursts, and unfortunately, we've been going through the same thing at home. Even when he's had enough sleep, he still has these days, so sleep issues clearly aren't the only factor.

As I said, our main concern about this is not its effect on his programs (which appears to be minimal).  We're concerned about RYAN.  What is bothering him so much? Why is he so upset? We don't want him to be unhappy. :( They also acknowledged that it has to be very overwhelming and stressful for me and the family (it is), and they want to help us, too.

Since we've exhausted all the therapy/behavioural/relaxation angles in this situation, Ryan's senior therapist made a good suggestion: it's time to investigate the medical.  We've got a sweet little non-verbal guy here. He can't tell us what's wrong.  What if it's something that we can't see? It's time to get him in for a thorough check-up by a good doctor.

Of course, nothing is that simple in our lives! I called Ryan's pediatrician as soon as I got home from the meeting and asked for an appointment. Their response: "Oh, it's been over a year since we've seen him. That means he's like a new referral. So, we're booking in September . . ." WHAT?!  I'm sorry my kid is generally healthy (besides the autism), so we haven't had to grace your office! I was not happy, but the receptionist was an "it's official policy" type.  I gnashed my teeth for awhile, then fired off an email to Ryan's senior therapist with this unwelcome news.  She was stunned, but made the suggestion that I call back and ask if we can be put on a cancellation list or something. I'm doing that on Monday, now that I've had time to collect my thoughts. Oh, and here's more irony: I might have been able to bring him into our family doctor, but SHE referred him to this pediatrician when she found out he was severely autistic because "his case was too complicated" for her.  Lord, help me.

Anyway, moving forward:

Good things that came out of my monthly meeting with the senior therapist: 1) Ryan continues to do well and make progress in his programs.  2) We're going to try and get another transition-to-school meeting together in August to iron out the final details. 3) We are seriously considering starting some potty training! Yes, you read that right.  They tracked his wet diapers for 2 weeks and did see a pattern, showing he seems to hold it sometimes, and we can work with that! They also noticed (and I have at home, too) that he is more aware of his diaper (grabbing at it if it's wet, that kind of thing). We've also now got him removing his shorts/pants by himself when prompted. Like everything else, this will start out simply. We will probably just get him used to sitting on the potty for short periods of time with no expectations simply to get him used to the action and surroundings.

Finally, Ryan was having a bit of a rough day today. Again, it was the angry crying for no apparent reason. :( I had been lax in my exercise this week, and it's such a beautiful afternoon out, that I decided to take Ryan out for a long buggy ride (well, as long as he would tolerate it). Pfft, no worries there!  We were out for an hour and 20 minutes!  I walked down to the Forest Glade baseball diamonds, past his future elementary school (to refamiliarize him), and back through the trails through the parks there. At the baseball diamonds, we stopped for 5 minutes to chat with one of Andrea's friends' parents. Later, we stopped at the park by the Forest Glade library for about 10 minutes.  Ryan and I climbed up the climber together and went down the twisty slide together (he liked that), played a little music on the piano keys on the climber, and went over to check out the swings.  Here, Ryan had another first: he was swatting at the baby swings like he wanted up, but I thought, no way, you don't fit in those anymore! You always get stuck! So, I took him over to the big kid swings and said, "Ryan, let's give this a try!"

 

He did great! I thought he would be scared, but he let me lift him and securely park his bum on the seat. Then, I helped him hold on and stood behind him. I supported his back and elbows and gave him some tiny pushes.  He liked it!  I felt that was enough for a first time, so then I let him just sit and get used to the feel of the swing. I would say he felt pretty secure because his toes were touching the ground, and he decided he only wanted to hold on with one hand (as you can see above). He let go with both hands just once, and startled himself into quickly grabbing hold again.  Don't worry; Mommy was right there to make sure he was safe. :)

 

He was ready to move on, so we headed back to the stroller. He paused mid-walk in front of this hippo, and I had to laugh at the angle. It looks like the beast is about to devour him, and he's oblivious! ;)  

We walked back home.  We'd been out for about 55 minutes.  I asked him if he was "all done" or wanted "more"? He just got mad so I figured, okay, he's done.  We got in the garage, I took him out of the stroller, and started to unload a few items from the stroller.  What does Ryan do? He climbs right past me, back into the stroller, parks his butt, and clearly signs, "More!" What could I do? I couldn't deny that clear request! So, I buckled him back in, and off we went again, for another 25 minute walk. Oh, that boy. I love him to pieces. <3

Ryan Visits "Big-Kid" School

At the end of April, when we had the transition-to-school meeting for Ryan, the principal had suggested I bring him in one morning to check out the school and get a little familiarity with what will become part of his new routine in the fall.  On Tuesday morning, I took Ryan to H.J. Lassaline Elementary School for a visit. Lassaline is the school that Andrea and Kevin attend, and Ryan will be going there two days a week next year for JK. [The plan for September looks like Monday and Wednesday at Lassaline, Tuesday and Friday at Summit, and Thursdays are still home therapy days.]

Ryan and I went into the school when we dropped Andrea and Kevin off on Tuesday morning.  He was a little hesitant as we walked up to the building, but stopped to watch the JKs playing in the Kindergarten area at the front of the building.  He smiled at them a bit, and I thought that was a good sign.  I told him, "That is one of the places where the JKs play. Maybe you will play there next year!"

Then we headed into the building.  As we came up the doors, he whined for a second, and I thought, "Uh oh . . ." But as we headed in, his curiosity overcame his confusion/anxiety.  The principal was waiting for us as soon as we came in the doors and greeted him with a cheerful, "Hi, Ryan!" She got down on his level, and explained to him that she was going to show him around some places in the school he would be seeing next year. She offered him her hand; he touched it, but wasn't quite ready to hold her hand yet. Instead, he held Mommy's hand, but followed Mrs. E. willingly.

First, we walked down the hallway to one of the JK rooms. It was pretty quiet because the kids were just lining up to come in for the morning.  We let Ryan walk in and look around a bit. One of the EAs and another little boy were in there. The boy was very excited because he thought Mrs. E. was bringing them a new student for their class, and he kept chatting to Ryan and asking his name. Ryan just smiled, but it was cute.

Next we headed back down the hallway into the gym.  Mrs. E. explained this was where they had lots of room to run around and play games. Ryan seemed kind of overwhelmed by this big, empty space. He just stood there, looking around with big eyes, and clinging to my hand.

Next, we headed into the open concept area to see the computer area.  Kevin was lined up with his class, so we stopped to say hi.  Ryan seemed pleased to see Kevin, but Kevin was kind of thrown-off by our presence. Having Mommy and Ryan at school is not part of Kevin's routine!  Anyway, we also saw Kevin's teacher, and she wanted to come and meet Ryan. So, we chatted with her for a minute or two.  Everyone was commenting on how much the two boys look alike, and how cute Ryan is.

I was pleased that Ryan was so calm and content, and even smiling at people, as we wandered around. It was a busy time, with the kids just getting settled in for the morning, in an open-concept school.  We only went a few steps further and encountered Andrea and her teacher. Andrea's teacher was also eager to be introduced to Ryan because she'd heard so much about him. Andrea later told me that her teacher thought Ryan was "so cute!"

Another great thing was Ryan's response to greetings. At Summit, they've been working lately to get him to wave hello and good-bye to different people when they greet him verbally (no waving).  At Lassaline, he amazed me by how many times he waved hello and good-bye to complete strangers who greeted him. Talk about excellent generalization of a skill! I was thrilled! [So were the people at Summit when I told them about it. ;) ]

Finally, we went down the hallway to the other Kindergarten area (the Kindergarten classes are not part of the open concept Lassaline). In there, we met the teacher, Mrs. C., at the door.  She invited Ryan in and we stood still for a moment or two for O Canada and prayers.  I had to chuckle when Ryan got noisy/excited during prayers, so I hushed him, and Mrs. C. said, "Oh, don't worry about that! These guys can't even be quiet right now!" (motioning to the many restless JK/SKs, who were, in fact, talking and moving around). Then, she got down on Ryan's level and asked me, "How are his sensory issues?" before she offered him her hand.  Now THAT is a teacher who knows her autism stuff!  Ryan took a liking to her; he smiled, made some chatty noises, took her hand, and even leaned against her for some cuddles!  The principal was impressed. She kept saying, "Wow, look how he's bonding with you already!" And of course, I'm thinking, "Mmmhmm . . . I know which teacher I want him to have next year! I hope the principal keeps this in mind (although I have no real say in the matter)!" Now, I could be mistaken, but through all the JK/SK hubbub I think I heard Mrs. C. (the teacher) say, "I have a son with autism."  If she does, that would explain why she totally seemed to get it right. :)

As we were leaving, we passed by Kevin's classroom again, and his teacher asked us if we could stop by for a second.  The class was intrigued when they heard Ryan was visiting, and they all wanted to meet Kevin's brother.  They were SO cute.  They were saying things like, "Aww, he's cute!" and "He looks just like a small Kevin!" By the time we left, they had officially nicknamed him "Kevin Jr."  Kevin, meanwhile, was sitting at his desk frowning and diligently writing the day's notes in his agenda.  As I mentioned before, Mom and Ryan invading his school space is NOT part of his routine, so it was uncomfortable for him. I said hi and gave Kevin a little hug, but we didn't stay too long because I didn't want to upset him. When we left, the kids said good-bye and Ryan smiled and waved at them!

Thus, our first visit to "big kid" school was a huge success. It left me feeling happy and confident that the staff and students at Lassaline are going to treasure Ryan as we do.

We are planning to do another visit in August, once we find out for sure who Ryan's teacher is going to be. Then we'll be able to take him to get to know his teacher and familiarize him with his classroom. The plan is to take Kevin, too, to meet his new teacher and see his new classroom. Kevin has gotten very attached to his teacher over the course of the year. Mrs. B. has been great with him, and he's going to miss her. She's been trying to prepare him for the changes in September, but he said, "Why can't you be my teacher next year, and the next, and the next?" She said, "Well, I teach Grade 1, and you're going to Grade 2.  You'll still see me, and besides, what happens when you get to grade 8?" Kevin responded, with a big sigh, "Well, I guess I'll just have to move on." LOL! :)  

The Road Less Traveled . . . Part II

About 10 months ago, I wrote a blog post about big changes ahead in my life, especially in terms of my teaching career. I decided to take a year's leave of absence to focus on my health and my family with the possibility of it being a permanent move. I suggest you read that post again to refresh your memory regarding my motivations and concerns at that time: "Big Changes Ahead: Taking the Road Less Traveled." Really, my motivations and concerns are the same now as they were then, leading me to make a final decision.

On Monday, June 2, 2014, I submitted my official letter of resignation to the Windsor-Essex Catholic District School Board. Effective June 30, 2014, my formal teaching career is done.

It has been an amazing year. This has truly been one of the happiest years of my life.  My gastric bypass surgery went well, and I've achieved my health and weight-loss goals.  I'm down 115 pounds, and running 5K almost every other day. I'm much more relaxed. I don't feel guilty anymore about not being there enough for my children, especially not dedicating enough time and energy to Ryan's therapies.

Still, not everyone understands this choice. Andrea and Kevin are too young to fully appreciate the benefits of having mom at home.  Andrea sometimes hurts my feelings when she says things like, "It's not fair! You get to stay home all day and do nothing!" She also doesn't like that we don't have as much money as we used to, so we're not getting that in-ground pool anymore.  :p

My principal and union president don't understand, either. They've both very kindly presented me with several options that might lead to staying on with the school board.  I think they're just unsure how to handle my situation since there's very little precedent for it.  It's kind of like retiring at age 36. I get it. It's weird. But it's what I need to do for me and my family.

Admittedly, in one of my early emails to the principal indicating I'd like to resign, I vented a little about my unhappiness with the continuing end-of-year-staffing struggles at St. Michael's and a few other staffing choices made by the Board this year that were questionable (I won't get into the details of those).  My goal was simply to make it clear that I care what is happening at that school, and although I'm leaving, I want what's best for our students and original/core group of staff. Both my principal and the union president were concerned that was my major motivation for resigning.  No, it's not; it just makes my decision so much easier and satisfying, putting that stress and negativity behind me. Again, I would probably be a supernumerary teacher; if I had a position, I was offered only a half-time schedule at St. Michael's and a half-time schedule at another school to make a full day. Ugh.

How on earth could I work that crazy schedule with Ryan's new, complex schedule which starts in September?  He's going to Summit two days a week, Lassaline (integration at Andrea and Kevin's school) two days a week, and there will still be home day on Thursdays. Plus, all of the time and parent involvement commitments at Summit (and home) continue.

People ask me, "So, what are your plans?" Um, I think it's pretty clear.  I'm a full-time Autism Momma. That's my plan. Trust me, with 2 little guys on the spectrum (one on the more severe end), I'm not sitting here twiddling my thumbs or looking for things to occupy my time. Do I need to list it all for you?

And you know what? Maybe I do have a little more ME time. But I need that. Desperately.  I think it's the number one reason why Rod offered this choice to me last year. I was suffering from caregiver burnout. Now, I certainly can't claim I never get stressed out,  but it's manageable. I don't feel hopeless and overwhelmed.  I'm so much healthier than I was at this time last year. And I need to be mentally, emotionally, and physically strong for the long haul because my children, my boys especially, are going to need me to be around to advocate for them and take care of them as long as I possibly can.

I am content with my decision. I am taking it day-by-day. I no longer have a "big plan" for where my life is going. I'm just going with it, doing the best that I can for my family. On to the next chapter! :)