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 

I Thought We Were on the Same Page

I am so upset right now.

You know how I've been having a tough time dealing with Ryan's transition from Summit Centre to full-time kindergarten. Well, I just got a call from Ryan's senior therapist (ST) at Summit Centre telling me that Lassaline (school) is not exactly cooperating with our plans.

You see, Ryan's ST has been calling the school to try and set up an opportunity so she can observe him in the school classroom. This way, she can make recommendations about how they can accommodate Ryan more effectively in the classroom. We did this about 3 times last year, and it was helpful for everyone. Summit Centre saw what Ryan was doing at school; the ST gave suggestions for the teachers and EAs to address Ryan's unique learning, behavioural, social, and environmental needs; and I got reports back from both the ST and the teachers/EAs about Ryan's classroom experience.

This time, the ST really wanted to observe Ryan BEFORE our transition meeting on October 14. It just makes sense: she can go in, observe, and have time to get suggestions ready for our meeting with the principal, teachers, and special education coordinator. But when she called to try and get a meeting this week, the principal's first response was, "Tuesday won't work. I'll call you back about possibly doing it on Wednesday." Okay, that's understandable.

But this is where it gets confusing. The principal called the ST back today and said something to the effect of, "Wednesday won't work either. In fact, we'd rather just wait and talk about things at the transition meeting." When the ST explained her reasons for us wanting to meet before next week, and emphasized how important this was to us (her and I), the principal went vague on her. The principal said something about "wanting to sort out issues in the classroom before we meet."  When the ST asked her what that meant, the principal would not elaborate.

WHAAAAT?!

Okay, I have several issues with this.

1) We always had our ST observe before our meetings, and bring suggestions to the meeting, last year.
2) Summit Centre and Lassaline had no communication issues with each other last year. When it was time to set up appointments, they did it. If consultation was needed, they did it.
3) If there are issues in the classroom, WHY am I not aware of it? We have a communication book. I talk to the EAs every time I pick up Ryan. They have all my contact information.
4) It's the ST's job to help them transition Ryan to school. If he's having issues, she needs to be aware of them.
5) Like I said before, we need to know about any issues ahead of time so we can go into the meeting armed with suggestions and support for them!

ARRGGGHH!

Essentially, I'm mad because it feels like they are knocking our ST out of the loop when now her involvement is more crucial than ever. I could tell my ST was kind of speechless over what happened with the school today. She didn't really know what to say to me; she was calm and diplomatic, but sounded really confused. I told her I would do my best as Mom to get more information about the situation, so we can go into the transition meeting prepared for what they might have to say.

When I picked up Andrea and Kevin this afternoon, I went in with my Autism-Momma-Bear on, fully prepared to confront the principal and get this straightened out. Of course, she was busy; and of her time, I got one frazzled glance. I didn't have the time to wait around and talk after school because we had to leave immediately to go pick up Ryan from Summit.

My plan for tomorrow: Get her on the phone. I usually have better success with that during the school year although it might take a day or two for her to respond. This time, if she doesn't call me back by the end of the school day, I'm calling again on Thursday. And if she doesn't contact me on Thursday, I will try to see her, in person, on Friday afternoon (I know she'll be busy Friday morning--school Thanksgiving mass). Monday is a holiday. Tuesday is the day before our meeting. Ugh.

Anyway, sorry if I'm rambling a bit here. I'm just trying to marshal my thoughts and be rational about this.

Who knows? Maybe the "issues" in the classroom have nothing to do with Ryan, but with staff politics. Either way, isn't what's best for Ryan the most important thing? And isn't observation and helpful suggestions for Ryan, being ready for discussion AT THE MEETING, what's best for Ryan?

Also, this is another monkey wrench thrown into the transition gears. This, too, will likely delay his transition date.

I should seriously consider cancelling that mindfulness training course I signed up for on Thursdays. It's not looking promising that he'll be starting full time on October 19, which means Thursday, October 22 will probably be a home therapy day.

You know, it's not like I need a meditation/relaxation course. How selfish of me. :p

The Trouble with Transitions

Disclaimer: In this blog entry, I'm going to be talking about things involving Summit Centre and Ryan's kindergarten school, H.J. Lassaline. Before I begin, I want to make clear that I am NOT upset with the staff at either organization. Yes, I am going to vent some concerns and frustration, but it's all coming from MY perceptions of the situation. 

Just over a month ago, I got the news from Summit Centre that the plan was to transition Ryan to full-time kindergarten around the third week of October. You can read about that here .

Well, today is October 1, and we have yet to book a transition meeting with the school. 

Let me backtrack and explain a bit. 

I had my monthly meeting with Ryan's senior therapist at Summit on September 25. At that meeting, she gave me the final, signed copy of Ryan's discharge report. She gave me a copy of all of Ryan's programs from his binder as they currently stand. She gave me a copy of the results of the two most recent VB-MAPP assessments Summit Centre completed with him in case any of the professionals he works with in the near future might request it.  We talked about getting her into the school to observe Ryan and make some final suggestions for his teachers and EAs. It sounds like she's got everything lined up to discharge Ryan soon, right?

But when I asked if we were still looking at starting kindergarten full time on Monday, October 19, she hesitated. "I'd like to go in and observe Ryan. We need to contact the teacher to set up a transition meeting.  And then we'll go from there. We'll see what happens" was the gist of her reply.

Huh?

Okay, so this is where MY issues with this situation come into play.  I thrive on schedule and preparation and knowing things in advance.  I struggle with last-minute decisions and play-it-by-ear and unknowns.  Hence, this is driving me nuts!

I need that firm date. I need to mentally and emotionally prepare myself for that separation from Summit's services. I need to make plans and notify people about the upcoming changes in our schedule. I also have a desire to do something special as a farewell and thank-you gift for the staff, but I can't really plan that until I know what Ryan's last day will be.  

In some ways, I think I've kind of already started the process of detaching myself from my connections with Summit.  I've talked to the Executive Director of the Centre about resigning my position as Parent Representative on the Board of Directors by December.  I signed up for a Mindfulness Training program for parents of children with autism on Thursday mornings (I could never do that before because Thursday is home program day).  I've started investigating alternative methods/providers of private therapy for Ryan that we might pursue to keep him engaged in learning with autism specialists.  Mentally, I find I am a little less engaged in Summit activities.  I'm not as invested in the homework programs or the Thursdays at home or the upcoming events at the Centre. Don't misunderstand: I'm still doing what I need to do to help Ryan learn and fulfill my obligations.  But in the back of my mind, I have this little voice that keeps saying, "There's only ___ Thursdays left" and "I don't need to stress over getting homework done" and "There's only one monthly meeting left" and "I won't have to drive across the city anymore" and "I won't be forced to houseclean on Wednesdays," etc.  I know it sounds kind of silly or even careless, but starting to detach myself from the Centre this way helps me cope with the transition. But not knowing that final date is making me stressed out a lot.  I need that target to aim for, so to speak.  It's hard to explain.

It's not like I'm trying to rush Ryan away from the Summit Centre. That's hardly the case; if you read my previous post, you know I'm terrified to be without their support! It's more like pulling off that bandage.  I'd rather rip it off immediately and deal with a big dose of change than keep drawing it out slowly and painfully. I just want it over with.

I now understand something that Kevin often goes through when he's told we're gong out somewhere. He will get upset, protest, and insist he's not going. Suddenly, he'll turn around, put his shoes on, and say, "I want to go NOW." He will literally go out to the car, open it up, and sit in his seat until everyone else is ready to leave the house.  I get it now. When he's accepted the transition, he just wants to get it over with. Well, that's the state of mind I'm in right now.

As I said, we had our monthly meeting about a week ago, and 2 days ago there was a note in Ryan's communication book from the senior therapist saying she'd left a message for our school's special education coordinator to call her to set up a transition meeting. (I forgot we'd need to have him there.) I know this guy's schedule is crazy right now because they only have so many days after the start of the school year to get everyone in his family of schools' IEPs settled.  Then, we have to coordinate everyone's schedules for a meeting (senior therapist, principal, spec. ed. coordinator, teachers, me). And we'll meet. And we'll plan. And the senior therapist still needs to go in and observe and make recommendations, as I said before.

Waiting and wondering, like always.

If I'm having this hard of a time with transitions, no wonder my boys are struggling with them!  Is it a coincidence that the only difficulties Ryan is having at kindergarten, according to his teachers and EAs, is during transition times?  He cries when I drop him off, when coming in from recess, switching rooms during school, and when I pick him up from school. Kevin struggles with transitions, too. Drop off and pick up times are hit and miss; they can be great or horrible.  He also struggles whenever the regular schedule for the day is interrupted (say, by an assembly or special event) or when his usual teacher is away.  

So, yeah: The Trouble with Transitions. Me and my kids don't do transitions well. Nope.