Kevin's Thoughts on Autism

We had a tough morning.

Kevin was in tears, and refused to participate in any of his morning routine, because he simply couldn't understand why he has to go school. To him, it is unfair.  Why do we only get 2 days for the weekend, but there are 5 days of school?  Why can't he stay home and play on his computer, where he is happy? Why do we force him to eat breakfast, get dressed, brush his teeth, and put his coat and shoes on EVERY SINGLE DAY? 

In my mind, it was more like, why do I have to go through this debate almost EVERY SINGLE DAY? Why can't he simply accept that some things just are the way they are, some rules must be followed, that sometimes, we don't have a choice in the matter? Sometimes, life ISN'T fair, but that's too bad; being a part of society requires we fulfill certain responsibilities, whether we like it or not.  

Still, it breaks my heart every time the anxious, harassed, overwhelmed mom in me doesn't have the patience to deal with these meltdowns, loses her cool, begins yelling and manhandling this boy, simply because she doesn't have the time or energy to deal with this in order to get him to school on time.

I wish I had a better understanding of how to reach my boy, soothe his school-related anxieties, and peacefully reason him into a positive mind-set to prepare for the school day ahead.

I also wish I understood more about how his brain works.  What is he thinking? Why does he feel the way he feels? 

This led me to contemplating how my 8-year-old son perceives his autism.  

I recently read a heart-wrenching story about a young girl who was writing notes to her teachers and parents from her hiding spot under a desk at school, where she placed herself because she feared others perceived her as "bad." Kevin has told me in the past that he has "the kind of autism that makes you be bad."  While I quickly corrected his misconception, we haven't had a serious discussion about this in a while. This afternoon, I decided it was time to have a chat with Kevin about how he views his autism.  Has he let go of his previous misconceptions? 

Here is a transcript of our conversation.  I've written it in his voice, using his exact words, so you can feel the rhythm of his speech and thoughts.

If someone asked you, "What is autism?", how would you explain it to them?
Well, I would say it makes it a lot harder to control yourself. And it can also give you special needs.

What kind of special needs?
Something like, you can get tired easily.  You have something you like, so you don't do it. That kind of thing. Special needs.

How do you feel about having autism?
Well, it feels kind of strange because some people don't have autism. Plus, it makes it feel a bit harder, which I don't like that part.  But it is true that, on the other side, autism can make it good. Because probably without autism, I wouldn't have all my sounds. Yeah, I like my sounds.

Speaking of your "sounds," why do you make noises, instead of using words, to show your feelings?
The reason I do that with my sounds is since, I was just like, born like that.  But another way to describe it is that I decided from my autism it might have made it for that reason.  And the reason why I actually do it though is because I use my sounds to explain how my mood is, but it's usually hard to tell what's wrong, though.

So, is it easier for you to use sounds than words?
Yeah, plus I have to use less words often.

Is using words hard for you sometimes?
Yeah.

What do you want people to know or understand better about your autism?
I wish they would understand, like, some of my own special needs for autism; and for the people that do know that, understand my sounds more since I use them more often.

So, what kind of "special needs" do people need to understand? Can you give me some examples?
So, something like one of my special needs is I can get angry easily. That if I get angry, there's not too many ways to calm me down, though.

Is there anything people can do to help you when you're upset?
Well, sometimes like, they can, based on like who it might be, sometimes just like trying to make up and saying sorry just like usual people, though.  And there is a few more ways like if I kind of stay in one room by myself with a little bit of quiet. And it's also sometimes easy when I can, like, usually sometimes just play on my video games and not lose or anything; that might calm me down.

Why do you get so upset about going to school most days?
Because 1) I just like to play on my computer, and the thing is you like, can't bring any electronics to school unless it's a special day like Loonie License Day or something like that.  And otherwise, you do have to do work. But really, there is at least one more thing I should say, which would be it makes it a bit harder because it's much more loud there since there's more people than at home. That's probably all I can remember right now.

Sometimes you get upset even if we're going to places where you can relax and have fun, like Grandma and Papa's. Can you explain why?
Because sometimes I'd rather just relax at home than get dressed or like get ready, having to put my shoes and coat on, and waiting to drive there, even if it's like a short drive, to like Grama and Papa's.

Why is that hard for you, getting ready and all that stuff?
Because like, for my shoes, I have a different way of putting them on, so I kind of pull them back a little bit, but that doesn't really seem frustrating.  It's my coat, because it sometimes, even though it eventually does go up, the zipper doesn't really go up sometimes, which might get a bit frustrating about getting ready.

Remember yesterday, you were sad about there being "lots of people" at Grandma and Papa's. Is it hard for you to go places where there are lots of people?
Well, I was actually sad [voice wobbles] because it was so loud I was getting a little bit of a headache.

Can you explain why you have a hard time falling asleep and staying asleep at night?
It's like, since I was trying to go to sleep, it's like since I was playing on my video games all day, even if I was doing something like playing with my plushes all the next half hour, pretty much doing anything other than relaxing in my bed or something, that can make my body think it's still time to be hyper so it makes it hard for me to fall asleep.

What do you think would happen if we stopped playing video games before bedtime?
That is okay, but there's one little thing, though. That includes like even watching TV, playing plushes, pretty much anything. Yeah, anything makes me hyper before bed.  When I'm in bed, my body thinks it's still time to play because I just played.

So, what do you think we should do to help you relax? Any ideas?
Hmm . . . Well, let's see, like maybe going to bed a bit earlier sometimes?

Do you think you would like that?
No, not really.

What else do you think we could try?
So, I was thinking like, if maybe when I go to bed, like I have something comfy or something, maybe. Something like my plushes, basically. So I can try that.

What do you think about Ryan's autism?
His autism, well, he can't like, talk and he has a harder time learning things and he needs a lot more help than I do to do things.

Is it hard having a little brother with autism, when you have it, too?
Well, when I would have it, too, it does seem to be a little hard at times, but sometimes it feels better when he's happy. Because when he's mad he cries a lot, and since I have like extra-special needs, it makes me really angry, so I start getting angry while he's crying. I don't like it when he cries. It makes me angry because it hurts my ears a lot.

What's one last thing you want people to understand about people with autism?
One last thing is that I do have some like, have some different ideas about about entertaining people. A normal person would play with you to entertain you, while autism people might watch or do something else nobody else can do. Like I do my sounds [blows raspberry/motorboat imitation]. But that's just MY autism.

Tell me some good things about you. What can you do well? What makes you special?
I can do addition.
My autism makes everyone who knows me care about me and love me.
I seem to have talents like being able to control myself once in a while. I also can have fights but they're actually usually not TOO big: nothing really, really, bad.
I have autism. Not actually everyone has it.  Some people do, like me.
That's it.

It was a good conversation.  I didn't really learn anything new, but I could tell he appreciated the fact that I was asking him to share his thoughts. I'm not sure he's ever really contemplated, in depth, his autism; it's simply always been a part of him. I was glad to see that the word "bad" didn't appear in his description of autism; however, I see where I will have many opportunities to teach him more about autism in the near future. I'd like him to understand that autism is about neurodiversity, and that neurodiversity is something that makes him special.  I'd like him to know that "special needs" doesn't refer to his deficits, but more to the ways in which others can support him. I'd like to focus more on his gifts, and what we can do to nurture them, than on the difficult behaviours.  

This conversation is a starting point.

I hope he recognizes that I asked him all these questions because I love him, and I want to help him. I want him to know that I hear him. I do. It may seem as if we are in an endless round of circular debates at times, but I want to keep this precious line of communication open. It is something that many ASD parents long to experience with their child; I know, for I have another little one with ASD, who as yet, cannot share his thoughts with me.  

Homework with Kevin

Talking in circles: Kevin is a genius at doing this until he wears me right down.

Tonight's homework session is so very representative of this.

I tried to capture as much of it as I could, to give you a sense of how this boy's brain works, and how tiring it is for me to grapple with his logic on a daily basis.

I was going to do a Facebook post, but this got too long. As long as it is, it still isn't an exhaustive record of the seemingly endless go-around that occurred throughout our interaction during homework.

***
[Kevin didn't do his weekend journal at school today. He had a tough morning. The teacher sent it home for him to finish tonight. He was not happy.]

Me, prompting him along as we begin homework: Kevin, what did you do this weekend?

Kevin: Nothing.

Me: Seriously? I thought you had a very busy weekend. You have lots you can write about.

Kevin: I don't remember anything.

Me: Well, I remember at least 3 things; you went for a haircut, Uncle Chuck babysat on Saturday night, and we went to Kade's birthday party yesterday.

Kevin: All of those things were boring. Nothing happened. I have nothing to write about.

Me: You didn't do anything fun with Uncle Chuck?

Kevin: No.

Me: Well, I can think of lots of things you did at the party yesterday.

Kevin: I don't remember anything.

Me: You don't remember going in the bouncy castle with Kade? Or showing Aiden your 3DS game? Or playing Minecraft with them? Or eating yummy foods?

Kevin: I don't have enough to write about. The teacher needs 3-6 sentences.

Me: Kevin, if you put ONE sentence about each thing you did, you will have enough sentences!

Kevin: But my teacher wants details, and I don't have enough details! And I don't know which thing to pick.

Me: Okay, I'll pick for you. Write about the birthday party. If you write about ALL the things you did at the party, then you'll have lots of details.

Kevin: But I did nothing at the party.

Me: I just REMINDED you of lots of things you did at the party!

Kevin: I don't want to do this at home. It's SCHOOL work, not HOME work. Is there any way I can NOT do this today?

Me: Absolutely NOT. You have to do it at home because you DIDN'T do it at school today like you were supposed to. It says right here in your agenda: "Kevin needs to complete this at home tonight" because "he would not cooperate this morning." Look. Your teacher wrote that RIGHT HERE.

Kevin, several sighs, moans, and groans later: Will you give me a Popsicle if I "bump it up" and write SEVEN sentences?

Me, worn out by this time, and trying to help Andrea with her homework, too: Sure. We don't have any Popsicles, but I'll give you something if you do a good job on your journal.

***
5 minutes later ...

Kevin has completed his journal. It has seven sentences. Yes, he wrote about the birthday party. And he wrote about the bouncy castle and showing Aiden his game. But all of the details were about Pokemon: how he and Kade played Pokemon characters in the bouncy castle, and what he showed Aiden in his Pokemon game. No, he could not remember anything about his haircut, his evening with Uncle Chuck, or what we did at the birthday party. But somehow, he could remember and name exactly which characters he and Kade pretended to be, and exactly what he showed Aiden on his game.

Seven sentences about being MewTwo and Digger and the "how to play" page on his Pokemon X game.

Autism.
Stickiness.
Focused interests.

Yep.

(He picked Skittles for his treat. Okay.)

Two Sweet Moments

I went in to do my final, 2-hour observation of Ryan at Summit Centre this morning. I was rewarded with two of the sweetest moments I have ever seen between Ryan and other children. I wish I could have captured it on film to keep forever because I know I won't be able to capture it in words.

The first moment was during circle time. Ryan was in a happy, but silly mood. (I participated as Ryan's "therapist" because they were a bit short-staffed due to multiple  kids needing bathroom breaks.) I was sitting behind Ryan, and he kept leaning back against me and laughing. Suddenly C., the little guy next to him looked over, caught Ryan's eye, and broke into a huge grin. He wiggled around in his spot and both boys started giggling together. They were supposed to be paying attention to circle, but I couldn't help laughing at their mischievousness. It was such a typical boyish interaction. 

The second moment was coming in from our recess walk. One of the first students up the stairs was having some difficulty, so there was a bit of a wait to get in the front door. Ryan was making some happy sounds, so A., the little guy standing in front of him, turned around to see what Ryan was doing. When he saw Ryan's happy face, he broke into a big grin, too!  And then A. started laughing and doing this adorable little happy dance. Well, Ryan thought that was hilarious, so he started giggling and reached out to touch A.  Then, A. made some happy noises, did a few excited jumps and flaps, and reached out for Ryan. Both boys were laughing like crazy! It was so precious. A.'s therapist looked back to see what was going on with a bit of a puzzled smile, but she'd missed the moment. It was time for them to head upstairs. 

I have never had the opportunity to see Ryan interact with one of his peers that way. And to see this silly, joyful, typical boyishness between autistic boys ... Well, it made my heart sing. And twice in one morning! It was magical. 

The Big Transition Meeting

This morning, we finally got everyone together to make some decisions regarding Ryan's full transition to school at H.J. Lassaline. It's been a LONG process. 

At today's meeting we had the school board's special education coordinator (SEC) for our family of schools; the school principal; the school's learning support services teacher (LSST); Ryan's classroom teacher; Ryan's senior therapist (ST) from Summit Centre; and me (Mom). 

Two people were new to me. I think the school has a new LSST this year because I don't remember meeting her before or seeing her in one of my meetings for the boys.  But the other new face was quite the surprise to me.  Apparently, Ryan got a new classroom teacher about 3 weeks ago, and nobody bothered to tell me! I know changes frequently happen with staffing in the first month of school, but geez . . . It would've been nice to know Ryan had a new teacher (Mrs. B) and to have gotten a chance to meet her before the transition meeting. Any-who . . .

The big news is, we have an official start date for full-time kindergarten: Monday, November 2.  That means Ryan's last day at Summit Centre will be Friday, October 30. Coincidentally, Summit Centre will be having their Halloween party that afternoon.  Ryan's last few hours there will be spent doing festive activities with his therapists and classmates. What a fun way to end his time at Summit! 

Goodness, it's going to be bitter-sweet.

I was a little worried they weren't going to settle on a date because his ST was hesitating, but the school was really pushing to get an answer. They actually wanted him October 26, but his ST wanted a little more time to come up with some strategies for the school.  When we all agreed on November 2, and his ST pointed out it was about 2 weeks away, I suddenly got a bit emotional.  It didn't help that we had been reminiscing a few minutes before about how he's been there almost 3 years and how he was "such a little guy" when we started there for Unity.  And then the ST had to say, "His team will be so sad when they find out he only has 2 weeks left . . ." Well, that about did me in.  I was fighting tears and the principal could tell I was about to lose it; she smiled so kindly and kept reassuring me, "He's ready. I know, it's a big change, but he's ready." I explained that I was fine; it was just overwhelming finally having a target date. It made it finally feel real.

The Plan

The plan is to have Ryan go straight to full day, every day at school starting November 2.  If we have major issues with transition, we might shorten his days a bit and work him back up, but we're not anticipating any problems. This is why we took over a year to transition him. He started JK in late September last year, doing 2 days a week, and that has continued until now.  

The SEC said he will have the school board's Autism team in to see Ryan and work with his teachers as soon as possible after he starts full time.  Ryan's plan will be built on a basis of structured learning with some flexibility built in.  The focus will be on socialization with an emphasis on transition times, as well, because he has a hard time dealing with those. At this point he does not have a formal IEP (Individualized Education Plan) because a) most kindergartners in our board don't get one due to b) the fact that socialization is the major goal for all of them anyways and c) they don't feel Ryan needs a safety or behaviour plan at this point.

I was a bit concerned about this, but the SEC reassured me Ryan will definitely have an IEP for next year (grade 1). In fact, they will probably take a lot of what they're doing at the end of this year and formalize it in June as part of next year's IEP.  Either way, he will get his formal IEP early in grade 1. They have to do it within the first month or so of school.

In terms of Summit Centre's involvement going forward, that got started today. After our transition meeting, they invited Ryan's ST to come to the classroom to observe Ryan and answer some of his educational assistants' (EAs) questions.  At the end of the day, his EA told me their meeting with his ST "was very helpful" and "gave us a good idea of some useful activities and direction for Ryan's program." The EA was pleased to discover that "everyone is on the same page." Our ST is also going to come in with some strategies for them after Ryan starts full time. Daddy and I have agreed that we will pay to retain her services on a consultation basis for the three months after he is discharged from Summit Centre since we now know the school is quite willing to work with Summit and grateful for their expertise on Ryan's autism. They are going to try and work it so that Ryan's ST can work with the school board's autism specialists, too, to make Ryan's transition as smooth as possible. 

The Teacher's Comments

The classroom teacher gave us a bit of a report on how he's been doing in the classroom. She's only been with him for about 6 days, since she's new and he's only there two days a week, but she had some good information for us.

• He uses his noise-cancelling headphones frequently to deal with the noise level in the classroom.  Apparently, they have an "extremely busy" class, but he's been handling it well.
• They use a system of realistic pictures (not representations) they carry with them, on a ring, to help Ryan transition from one activity/place to the next during school.
• He has a quiet area in the classroom for him to go and relax when he gets overwhelmed. They carried this over from last year; it works well. It also appears that he is not getting upset as frequently or as loudly as he did last year. 
• He will sit with the others at circle time. His spot is a bit larger than the others, to give him more personal space, and he does well.
• He will sit on the potty for them, but almost never goes pee at school. [No worries there; it's the same at home and Summit. It's all about increasing his comfort level and making it more routine.]  
• Other students do come and work with Ryan.
• Ryan's interaction with peers still needs heavy direction.  Kids regularly approach him, but they need the staff's assistance to continue the interaction and make it flow smoothly. [ST suggested Ryan may be more interested in physical forms of play with peers: tag, row-row your boat, patty cake.  The problem is that Ryan is missing gym days right now--it's on the days he's at Summit--so he's not getting those opportunities for structured, physical play with the others. That will be remedied when he starts full time.]

***

So, there it is.  When I said this transition has been a LONG process, I wasn't exaggerating. I looked back on the blog, and my first conversations with Ryan's ST about transitioning to kindergarten took place at the end of November 2013.  The next step was him starting school (junior kindergarten) two days a week on September 22, 2014. Finally, he'll be starting senior kindergarten full time on November 2, 2015. That's almost 2 years of planning that it's taken us to get through this transition. Wow.

I'm ready for the next stage to begin.  I look forward to Ryan being included in the class picture this year. I look forward to seeing more pictures of Ryan doing activities with his classmates on his class's private Instagram account. I look forward to Ryan being able to join in more field trips and celebrate more special school days with his brother, sister, and peers.

But I'm sad, too.  I'm sad that we will miss out on all the special events at Summit Centre: like today, when the firefighters came to visit the kids and let them explore the firetruck. Or like Ryan's last day there: the annual Halloween party just for our little ones, with people who understand that some of them can't say "Trick or Treat" and "Thank you," and some of them aren't comfortable in costumes, and some of them won't eat candy, so they give them non-food treats. Summit has been our safety net, our tribe, our home, for almost 3 years. 

Bitter-sweet. :')

The first picture of Ryan on his class's Instagram account.
Taken this afternoon.
Doing an apple-tasting activity with a friend and their EAs.
Ryan tried all 4 kinds of apple. :)
He looks like he's analyzing the flavours. ;)

   

Regression Sucks

This isn't going to be a happy post. I'm feeling rather discouraged right now.

Here's the Backstory:

If you've been following me on Facebook, you'll know that Ryan had an astonishing breakthrough this summer when it came to food. He went from eating only pureed, beginners' baby food and oatmeal, plus a handful of other things (Silhouette yogurt, Goldfish Crackers, Smartfood popcorn, and Ritz Bitz cheese crackers), to eating fruit, to trying so many new things.

His new diet included the following: blueberries, grapes, oranges, apple slices, some melons; Kraft macaroni and cheese; green/orange/red/yellow peppers, cucumbers, baby carrots, lettuce (especially Caesar salad); Protinis chicken strips; chicken nuggets, chicken wing and breast meat, pizza, French fries, perogies; ham and cheese sandwiches; Fruit Loops, waffles with syrup; tortellini with alfredo sauce and mixed veggies, cheese cappelletti, lasagna, spiral pasta with meat sauce; whole wheat tortillas, garlic toast, and other things. He also started drinking from a cup 90% of the time and drinking more water (he's usually a milk guy).

Note the past tense. He HAD an astonishing breakthrough.  His new diet INCLUDED ...

Over the past few weeks, I noticed he was starting to be less interested in his food.  It was getting harder to keep him interested in meals. He was eating less. I figured, okay, maybe that growth spurt is over, so his appetite has slowed down. It'll be okay.

Then, he lost interest in pizza. Okay, well, kids' preferences change quickly, and maybe he had tried so many new things that it was normal for him to drop a food or two now.

Then, he lost interest in chicken nuggets and French fries.  A half a French fry here, a bit of nugget there, but most left untouched. Okay, well those weren't so healthy anyway. No big deal.

Then, he started coming home from school with his sandwiches ripped apart or untouched and most of his Protinis chicken not eaten. I tried making him a plain bread and butter sandwich. That worked for a few days, but then they started coming home uneaten, too.  The Protinis I tried to give him at home, and he might eat a bite or two of chicken and swallow, but he started spitting out the rest.

Well, he still has his pastas to get his grains, right? WRONG. The boy who loved pasta has come to a screeching halt with it over the past week.  He might have a bite or two if he's really hungry. Today, I tried Kraft Dinner and Tortellini Alfredo (two of his favourites) separately, at lunch time, and he refused both.  He sat there and stared at his plate, then got up and ran away.  When I held the fork out for him, thinking his new "piercing food with a fork program" might be interfering, he pushed it away and got angry. Even when I did all the work, he didn't want the food.

Vegetables and fruits are slipping, too.  He still loves grapes and blueberries (his first solid fruits he accepted), but he won't go for anything else. In terms of raw vegetables, he's only eating lettuce (preferably in Caesar salad dressing). We started an ABA feeding program this week with TVCC at JMCC, and the ABA coordinator chose baby carrots as Ryan's target food.  In the steps for recording baseline data he's been doing well so far, since it's all leading up to him taking a bite. He jumped way ahead in the steps on his first day; he only had to tolerate it being nearby without protesting more than three times, and not only did he not protest at all, but he grabbed a mini carrot and took a bite. That's good, right? But then he ran to the living room and spit it out on the carpet. That scene has replayed 3 times out of six trials over the last three days. Sigh.

Why I'm Upset

Here's why this is so upsetting to me: Ryan hasn't had a major breakthrough like this summer's food breakthrough in like, well, ever.  It was so exciting to see him making major progress in at least one developmental area. At age 5 and a half, he's finally eating age-appropriate foods! Yay! He's trying so many new things! Yay! He can eat what his family and peers are eating (meals are a social thing, after all). Yay! And everyone is so thrilled for him. We've gotten so many comments from friends, family, therapists, teachers, and even his principal, for goodness sake, about how awesome he's doing and how proud they are of him.  Do you know how long it's been since we've had something this HUGE to celebrate with everyone?!  Yes, we have our teeny-tiny milestones that are a big deal for us, but really, this was the first major accomplishment everyone could appreciate.

WAS.

This is why I'm so discouraged.  This is why regressions sucks. You finally have a big breakthrough and . . .

One step forward, two steps back.

My friend often uses the hashtag #autismisatrickybitch on her public Facebook page and blog. I'm definitely feeling that way today. When you think you've made progress, a nasty, unexpected, inexplicable bout of regression yanks you and your child back. AND IT HURTS.

Thoughts . . .

I've seen this food regression building on the horizon over the past few weeks, and like I mentioned in the previous section, I tried to explain it away. But he's lost too many foods, too suddenly, for this to be a simple case of changing preferences. I've also seen Ryan experience mini-regressions when he's sick, but he hasn't been sick over the past few weeks. Well, he did have a slightly runny nose one week, but nothing that would trigger a regression. However, his mood has been a bit unstable again recently (inexplicable crying, very difficult time with transitions at home and school), so maybe there's something else going on, but I don't know what it is.

I did notice that Ryan seemed to going through a major growth spurt this summer at the same time there was the rapid increase in his appetite and the amount of foods he was accepting.  Perhaps his body took over and told his brain that hey, we need all these extra vitamins, minerals, nutrients, and calories to grow a bunch.  Maybe, now that the growth spurt's over, his body/brain is telling him it's okay to backslide a bit till the next growth spurt.  I guess we'll just have to wait and see.

What I refuse to do is return to the purees. No way. If he has to live on grapes and blueberries and crackers and popcorn and milk for the next few months, so be it. I refuse to give up on all the progress he's made this summer.

I'll admit, I shed a few tears at lunchtime today. It breaks my heart to see him struggling again in an area where he was doing so well recently.  It's also Thanksgiving weekend, which means a big family meal tomorrow, and I was really looking forward to Ryan trying all the yummy foods he's been missing out on over the years. Still, I will give him little forkfuls of this and that tomorrow, in the hopes that he may try something new or regain an appreciation for a food preference he's lost.

I suppose it's timely that his new ABA food program started this week.  Ironically, I almost canceled our spot in this program because he was doing so well with eating new things! They will be teaching us about how to present food so it's not intimidating, making eating a social activity, and how to have fun with our food.  I really hope this will help us stall, or even reverse, Ryan's current food regression.

***Update--I have a theory.

Not long after I finished this post, I was playing with Ryan on my bed. He was laughing, mouth wide open, and I noticed how much his two front teeth are sticking out.  The gums around one looked kind of red. So, I snuck my finger in Ryan's mouth and checked around a bit.  Sure enough, that left front tooth is super loose.  It'll probably come out in the next week or so. The other front tooth is sticking out a bit, too, and he has one on the bottom middle that looks really crooked.  I've been watching these teeth to see if they were going to come loose soon.

Hopefully, this food regression is actually a response to the chewing/eating discomfort caused by loose/emerging teeth.  I noticed, at dinner time, that he only wanted to eat Caesar salad. Even then, he was whining as he tried to chew some of the bigger bites. However, when I gave him his applesauce to take his dinner medicine, he gobbled that down.

I also wonder if it's tooth-related because he's been drooling again and playing with his mouth a lot. He's also been grabbing at me and Daddy's mouths and trying to put his fingers in our mouths. He hasn't done that since he was a curious baby. Interesting.

Fingers crossed that this theory is right, and once these teeth come out (on their own--it'll take time), that his eating will get back on track.

That top left tooth is almost ready to come out!

 "Ahhh!" That little, crooked one on the bottom
   left is probably going to come out sooner
 rather than later, too.

 

Prescription for Stress

I am SO tired of getting a hassle at the pharmacy every time I order/pick up prescriptions! Between me and the three kids, there's a lot of prescriptions. And it seems like whenever I go in to pick something up, there's a problem with at least one prescription!

Today it's Kevin's anxiety meds. And he NEEDS this. It can't be stopped suddenly. And yes, I ordered a few days ahead to be sure it was filled BEFORE the holiday weekend, but I can't order too far in advance or the insurance won't cover it.

Well, the insurance still wouldn't cover it. I go in to pick the prescription up and the pharmacy tech is like nope, it's too soon. They won't pay for it. I explain that my son only has 2 days' meds left. She's like, "You just got it filled on September 22. They won't refill it till October 22."

Then, I remembered that there was a dosage increase, and the doctor faxed them a new prescription. Um, apparently the pharmacy didn't get it. :(

So, I just called the doctor and, of course, neither she nor her secretary are in the office today! >:( They'll be back on Tuesday morning.

I know it's not the pharmacy's fault. It's mostly the asshats at the insurance company and partly the doctor's fault, too. She said she was faxing that updated prescription, and she's never messed up before. Arrgghhh!

So now, my options are
A) Kevin's without medication for about 3 days (not acceptable--it's unsafe).
B) Go to the pharmacy again tomorrow with Kevin's almost-empty bottle and beg the pharmacist for a few days' emergency refill till I can contact the doctor.
C) Give Kevin some of Andrea's meds because they're on the same medication, but his is liquid and hers is caplet. (I actually did this one day LAST month because of, yes, a refill issue.)
D) Pay full price for the prescription refill (which is not acceptable--what's the point of paying for insurance if you don't use it?!).

I have a feeling it will be option B), but maybe C) if the pharmacy won't cooperate. Or maybe D) if I find out we can get some kind of reimbursement after we get proof that his dosage actually went up before his last refill. :p

Why am I posting about this? Well, it's because like I said, this kind of thing happens with our prescriptions ALL THE TIME. I am so sick of it! I have enough things to worry about besides fighting to get our insurance to pay for meds! I'm also posting this because I see a lot of families in the States have this struggle, but I wonder if it affects a lot of Canadians, too. ???

Clear Communication is Key

I am happy to report that the frustration I experienced on Tuesday regarding our transition plans for Ryan has been resolved to my satisfaction . . . for now. 

Yesterday morning, I did manage to get the school Principal on the phone, and got her to clarify what she meant by the things she said (and didn't say) when talking on the phone to our Senior Therapist from Summit Centre on Tuesday. 

Coincidentally, I actually got some good information from one of Ryan's EAs before I even called the principal.When I dropped Ryan off yesterday morning, we chatted for a few minutes, ans she filled me in on some details about things going on in the classroom as they are preparing to have Ryan there full time.

Because I'm a busy momma, but I do want to share the info. with those who are curious (and also to document it for my own purposes), I'm going to put a copy of the "Note" I created on my phone and the email I sent to Ryan's ST below. 

Conversation with EA

While I was dropping off Ryan this morning, she brought up our transition meeting on the 14th. 

She mentioned the following pertinent items:

1) They are trying to prepare the whole class for Ryan attending full time. 

2)They are trying to get the other three little guys with special needs more settled in their routines and more independent so one of them can spend more one-on-one time with Ryan when he starts full time. 

3) They want to talk with our ST and find out more about the programs Ryan's working on at Summit. They want to spend time working on these with him in the classroom. They look forward to discussing ways to make the school and Summit programs mesh and transition seamlessly. 

4) They are trying to get Ryan's potty time figured out: trying to time it so they put him on the potty before he's wet, so there's more chance he'll pee on the potty. 

Email to ST (a few unrelated sentences removed)

I think I’ve got some answers to the questions we had about your phone call with the Principal yesterday.  She apologized for any confusion and for if she seemed rushed to you on the phone; she was in between meetings.

I asked about why they insisted on having you observe AFTER our transition meeting, and what those “issues” were in the classroom.

The reason for wanting to have you in after the transition meeting is because they are in the process of putting together lots of new programs and strategies for Ryan, and they want them to be fully in place before you observe them.  They feel it would look scattered/unorganized to you if you see it before they’ve had time to implement everything and make all the adjustments from their end.  Once they get things a little more settled, they definitely want your input. Basically, the “issues” are the things they’re trying to tweak right now.  It’s nothing major.  They just feel like they need more time to implement the changes before you come to observe them, and they won’t be ready before the transition meeting next week.

They don’t foresee this as delaying Ryan’s entry in any way.  I asked if they are comfortable with you coming to observe after Ryan has been fully transitioned (like on the consultation basis we discussed), and they are extremely open to your visits and suggestions.  In fact, the principal mentioned how eager they are to learn what programs Ryan is working on at Summit, and how you work with him, and get your help in melding Summit’s program with the school’s program as seamlessly as possible for Ryan.

The school is under the impression that Ryan will be full time by the end of October.  I have been operating under the assumption that it would be the third week of October, but it may be longer.  I think we are all kind of uncertain and need to come to a consensus. Maybe that is something we can do at the transition meeting, now that we know the full transition will not be the end of our consultations together?

I explained that it would be better for you if you knew in what ways they needed your help, so you could bring ideas to the transition meeting, but they don’t seem to be in a rush for that.  It appears they’d rather get their program settled first, and then bring you in to get feedback on that. 

At this point, the only issues the EAs have mentioned to me are 1) dealing with transition times (drop-off, pick-up, going to the the washroom, recess)—those are when Ryan gets most upset and 2) trying to set up a better potty schedule for him—like finding a way to get him on the potty before he’s wet, so he’ll be more likely to pee in the potty.

The Principal said they might want to talk to you a bit more, after our transition meeting, on that same morning.

Hopefully, this gave you some answers. I feel more reassured because my concern was that they weren’t interested in your input, but I’ve found it’s quite the contrary. They’re anxious to use you as a resource; they just don’t feel like they’ll be ready for a visit before the transition meeting.

ST's Response to My Email  

Thank you for keeping me informed That is great news! We will discuss details on transition to full time school on Wednesday.

***
This isn't the first time I've had a very stressful time because of a miscommunication with the school. Thankfully, once again, it turned out that everything was fine once we all started taking the time to communicate clearly with one another. ;P