The Next Big Transition

[I checked, and it's been almost 6 months since I posted on here. Wow! Lots has happened. There's no way I can get caught up, but hey, if you follow me on Facebook, you'll have seen everything there. With that being the case, I'll just hop right into what's on my mind today.]

This morning I went for my monthly meeting with Ryan's Senior Therapist (ST) at Summit Centre. I was expecting to discuss his programs, his progress, and any issues that had come up over the past month. What I did NOT expect was to be discussing discharge plans.

Yes, I knew he was going to be leaving soon.  I knew he would be officially ageing out of the program at the end of December (you have to be less than 6 years old; his birthday's in January).  I also knew that if his transition back into school (senior kindergarten at H.J. Lassaline) went well, he might be finishing at Summit even sooner.  Still, it was a shock to my system to be handed a rough copy of Ryan's discharge documents this morning. I knew we were planning on sending him back to Lassaline starting on Monday, September 14, for the same Monday/Wednesday schedule he was on for JK last year. However, when his ST said, "You'll have about a month to decide" about something, I did a double take.

Me: "Did you say a month?!"

ST: "Yes. If he transitions well, we give him a few weeks, and he should be completely transitioned by mid-October."

Me: "..."

ST: "I'm sorry, I feel like I'm telling you something new here.  Like this is coming out of left field at you. Are you okay?"

Me: "No, I mean, I knew it was coming, but . . ." But the reality of it hasn't sunk in yet.

It is, now.

***
So, there we sat, looking at a rough copy of the report the ST is preparing for the school.  It has all of Ryan's strengths and needs, discussed at length: what he can and cannot do in a variety of developmental, physical, emotional, cognitive, and social categories.  It's going to be a very important document, moving forward. Not only does it highlight Ryan's strengths and needs, but it also has recommendations for next steps and future goals.

After looking over this together, I asked her the question many people want to know: "Can you tell me at approximately which level, age-wise, he is functioning?" The short answer is no, she can't.  She's not qualified to give me a number. I was kind of disappointed, since the last time we had a formal assessment was almost 2 and a half years ago, after Ryan and I finished the UNITY program at Summit. At that point, Dr. Saunders had put Ryan's functioning level between 9 and 18 months old. Now, I know there's been development of skills, but something in my A-type personality desires that validation from a qualified professional. I can't explain it, but since Ryan can't communicate with me, I kind of need to know where he's at.

Anyway, the good news is his ST told me they do an assessment with Dr. Saunders when a child is discharged from Summit Centre.  She made a note for herself to book that for us within the next month or so.  I also know that Summit does regular testing (monthly videotaping, and twice-yearly assessments) to track the children's progress.  I've noticed they've been working through a lot of assessments lately for Ryan. In fact, his therapist was doing some this morning when I was observing (I'll discuss that in a bit).  So, I should be getting some answers within the next few months.

However, I worry about how reliable the results from Dr. Saunders' office will be.  The last time we went there, Ryan was pretty upset by the new place and the demands put on him, so I'm not sure if it was an accurate measure of his skills. Quite frankly, I'd be more inclined to accept the results of an assessment made by staff at Summit Centre because they know him, and he knows them.  It would be a more natural and comfortable situation for Ryan.  But I'll take what I can get, and use it to design programs and obtain the services Ryan needs as we move forward.

***
We also discussed options about follow-up for Ryan at Summit Centre. Well, really, there's only one option, and it's not as much as I had hoped.  How it works is we can have his ST's consultation services for 3 months after he leaves Summit Centre if we continue to pay the user fees for those three months. Basically, we would have to pay the same fee as if he was attending Summit Centre full time for those three months. Ouch. Since we're on the highest end of their sliding user fee scale, and we have no subsidies for it, it's a lot of money.  That's something Rod and I will have to discuss over the next month.  Right now, I want to wait and see how the transition to school goes. If it gets really rocky, then we may need those services. If it goes well, it might still be good to have Summit available for assistance, just in case.  I really don't know at this point.

***
Here's why I am having such a hard time letting go of Summit Centre:

1. They were the first ones who gave us a chance.

We had Speech, OT, and PT services through Children First. Children First had some good suggestions for accommodations at Ryan's previous (mainstream) daycare centre, but none of their programs really transferred to home well and he didn't make great strides in his development. As for Thames Valley Children's Centre, well, you know I don't have any great love for them.  They are the ones who denied Ryan IBI (government term for ABA) eligibility. I later learned that not only did that make Ryan ineligible for their intensive therapy program, it also made Ryan ineligible for funding from the government towards IBI/ABA programs. What that means is, if Ryan had been deemed eligible, they would have given us some money to put towards fees for Summit Centre. Several of Ryan's classmates get some of their funding subsidized by TVCC. Apparently, they couldn't tell the difference between Ryan's cognitive impairments and his autism, so they didn't think he'd benefit from intensive therapy. Well, we've shown them! Anyway, that's an old story. You can read about it in earlier posts on this blog.

Summit Centre, however, stepped up and supported us when TVCC would not.  They made a place for Ryan.  They made ABA programs that build on Ryan's level of functioning. They've been his cheerleaders since we started UNITY in January 2013. They've been supportive of our whole family! Andrea loves their Sibling Group. UNITY was a blessing of intensive parent training. Parent Support Group has brought me into contact with so many experienced, kind, empathetic, generous, and amazing parents and family members in the local autism community. The staff and therapists genuinely care about all the family members, too.   If it wasn't for Summit, I don't know where we'd be right now.

2. They provide a service that can't be replicated in the school.

I'm sorry, but Summit Centre is one-of-a-kind in our community.  Local schools simply don't have the resources to provide the same level of individual attention and accommodations to our kids.  Local schools can't provide 1:1 assistance on a guaranteed, consistent basis. The EAs are assigned to a classroom, and may be responsible for 2 or 3 children. They also don't have the training to provide intensive, personalized therapy.  One lead teacher is responsible for maybe 20-30 kids, instead of only 4 or 5.

In terms of therapies, I have learned that the OT, PT, and Speech services available for my children in the school system are minimal. For Ryan, he saw them maybe a handful of times last year. Most of them came in on a consultative basis, and barely even worked with him.  It's hard, when I'm used to Ryan having access to intensive, personalized therapy on an almost daily basis.

3. They know Ryan.

Ryan has been a part of Summit Centre for over 2 years. Much of that time was 3-5 full days a week. They've watched him grow from a little boy content to sit on his own in a corner to a kid who requests cuddles and tickles and who wants to explore his world.  They know what upsets him and what helps soothe him.  They understand how he learns. They understand what motivates him.  They know his capabilities.  They know just how far to push him to get him to try new things without making it traumatic.  They know our family: our struggles, our triumphs, how we parent, how we work as a unit.

The school has gotten to know some of these things. Yes, they know our family, as Andrea and Kevin are now going into Grade 5 and Grade 3.  They got to spend some time with Ryan last year, when he started attending on Mondays and Wednesdays.  We've sent them a lot of paperwork (and will be sending more!), and we've had a lot of meetings.  But they also have a lot of other kids to focus on, too.  Plus, teachers and EAs change frequently.  In fact, we don't even know yet who his teacher will be this year, or his ECE, or his EAs . . . Sigh. It's all so last-minute.  How can we prepare them for Ryan, and Ryan for them, if we don't even know who we're dealing with yet? The Principal's hands are tied, too. She doesn't know because things are constantly shifting in the first few weeks of school. Call back next week, she says . . . We're hoping that delaying Ryan's entry by a week will give us the time to sort this all out, take him in for a visit or two, put together some social stories with pictures of his staff and classroom for this year, etc.

There are so many more reasons why I'm terrified to let go of Summit Centre. They've played such a huge role in our lives the past 2 and a half years.  I can't even express how much they've done for us.
But they say he's ready to move on.

***
But is he? Is he really? I don't know.  The bitter part of me thinks they are just saying that because he's about to age out, so he has to leave. It's like they are trying to convince me it's okay.

I know they've focused a lot of his programs on school-readiness skills over the past year.  We've worked on a lot of skills he'll need for school like feeding himself and drinking from a cup; hanging up his school bag; getting out his lunch; holding a pencil; colouring a picture; doing crafts; sitting for circle time; imitating actions; undoing zippers; putting on shoes; recognizing items as his (mat, shoes, coat); using play centres like the kitchen or tool bench; and playing with peers.  He's making progress with these, but I wouldn't call any of them mastered yet.

He needs so much assistance and so many accommodations. Sigh.

He can't be alone. He has no sense of danger. He might run away.

He won't interact with peers unless it is closely supervised and facilitated.  If left alone, he would just wander by himself. I've seen him do this in the fenced-in school yard at recess. It breaks my heart.

I sometimes wonder if it wouldn't be better to have him in some kind of sheltered classroom (I don't even know if that's the right term, since we really don't have them in local elementary schools anymore).  What are we gaining by full integration? Yes, I want him to interact with his neurotypical peers.  I want him to have the same opportunities and experiences.  And yet . . . He doesn't learn the way they learn.  He can't yet communicate with them.  As I said before, all interactions need to be guided by an adult.  What does he get out of this experience?

Sometimes I feel like this is more for the other kids.  They get to learn about others whose brains work differently.  They get to learn compassion and kindness and patience and acceptance by interacting with Ryan.  But what does Ryan get? I know there were a few kids in his JK class who tried hard to make him welcome and interact with him.  All of them were kind, or curious, but most of them weren't sure how to interact with him and just left him alone.  What happens as they get older? Will they still accept him? Will they befriend him? Or will they just start ignoring him even more?

In terms of his learning, What will they teach him? Which methods will they use? What will they do when he gets sad or frustrated? I know it's only kindergarten, but I also know these early years will set the tone going forward.

This morning, I watched one of Ryan's therapists do some activities with him that are part of a larger assessment (I didn't get to ask which one). The focus was on imitation skills.  She modeled, and then tried to get him to imitate, blowing bubbles; touching his nose and his belly; blinking his eyes; pursing his lips, and patting his lap.  As she went through them, he got more and more frustrated and confused. He was scrolling through all the imitations he knew, trying to find one that matched what she was doing. He clapped his hands, stomped his feet, touched his feet, and touched his head . . . while crying.  It hurt me so much to watch this.  He was trying so hard to do what she wanted, but he just didn't understand.  The one he did was pat his lap, because that one comes up in some of their circle songs. And for pursing lips, the therapist changed it a bit and said, "Blow me a kiss!" Well, Ryan knows how to do that, so he put his hand to his mouth and did the blowing-a-kiss motion.  So, the things similar to what he'd worked on before, he could do.  But the new imitations? All they did was cause frustration and tears.

Now picture a typical classroom. Okay, I know, major curriculum and assessment modifications will be made for Ryan, but still, WILL THEY KNOW HOW TO REACH HIM?

Summit Centre does. Just sayin.'

I don't know if it's Ryan who's not ready, but I know I'm not ready for this.

Living Better Chemically?

Some of you may remember, back in the summer, I was debating whether or not medication might be helpful for regulating Kevin's emotions and behaviours.  Then, at the end of September, he had a psychiatric assessment with Dr. Ahmad in which she recommended we try giving him Prozac to help his anxiety. At the same time, we were still undergoing medical investigations for Ryan, who was experiencing uncontrollable outbursts of crying that had no apparent cause. I also had a lot of concerns about Andrea's emotional well-being. (If you want to scan through for a refresher, most of that info. can be found here.)

Several months have passed, and a lot has happened.  My focus for the post was going to be Kevin, but then I realized, right now, this topic of "Living Better Chemically?" is something that relates to all three of my children. 

Kevin
Kevin saw Dr. Ahmad in September, and we started off with up to 2.5 ml of Prozac a day to help with his anxiety. After a few weeks of adjusting to the meds, it seemed to be helping him quite a lot. He was happier, more helpful, had more confidence, and his negative behaviours at school were decreasing.

By the end of October/early November, however, serious problems began to crop up in the afternoons at school.  He was lashing out at other kids, not doing his work, trying to run away from the classroom, and trying to run away from me when I picked him up at the end of the day.  It seemed by the afternoon, he was just worn out. Fed up. They tried giving him some quiet time before returning to class after lunch, but he was done.  He also started lashing out at Andrea and I when I would pick them up at the end of the day.

At our next appointment with Dr. Ahmad, we decided to add a half-tablet of 0.25 mg Risperidone at lunchtime each day in the hopes of improving his mood stability in the afternoon.  Again, it took a few weeks for his system to adjust, but we saw some improvement, and thought it a success.

Over the holidays, we increased Kevin's dose of Risperidone to a whole pill at lunchtime. He seemed to need the extra medication to regulate himself better during the whole Christmas-New Year's-Being Off Schedule extravaganza.  He appeared fairly stable.  We got through the holidays with no major meltdowns.

But when he went back to school after the holidays, something changed. 

I noticed that he was napping a lot on the weekends and in the evenings.  Kevin hasn't napped in about 4 years (unless he is sick).  He has started screaming at us at home again and calling people "stupid." His after-school outbursts/running away episodes when I picked him up got to the point that they now have to have an EA accompany him out to the lobby to meet me after school. In class, the teacher has to keep him within arm's reach and constantly encourage him to complete the work, which he often "digs in his heels" (her words) and refuses to do.  They also have the EA from the other classroom keeping an eye on him in the afternoons, trying to prompt him to complete assigned tasks. 

Really, though, it was during a school meeting I had for Ryan last week that I became truly worried.  After Ryan's meeting, the principal asked, "Can we have a talk about Kevin?" and I knew it wasn't going to be good news.  And it wasn't.  She was seriously worried about Kevin.  He had taken to screaming at people that they were "stupid" and "idiots." At one point he had yelled, "I'm going to kill you!" When his teacher was away one afternoon, even though she had prepared him for her absence, he ran across to the other grade 2 teacher's class, plunked himself down, and refused to return to his own classroom. Even the principal, who has a great relationship with Kevin, could not get him to listen to her. He would run away from her when she tried to talk to him. The staff noticed he had developed a tendency to tremble, and was now becoming extremely emotional and crying very easily, which he hadn't done before.

She noticed the increase in Kevin's Risperidone and asked if that could be a factor.  I agreed it was worth investigating.  So, I made a call to Kevin's psychiatrist to get an emergency appointment since we weren't due to see her for another month.

I went home in tears. What could I do to help my struggling boy? Then, that same afternoon when I picked him up, I found out Kevin fell asleep on a bean-bag chair in class; he slept for an hour and a half, and they had to wake him up to come home.

And my tears continued when I got his report card on Tuesday. Kevin has always been an A/B student.  He is extremely intelligent and capable.  Some of his report card reflected that: as usual, all A's in the Math strands.  A in Social Science. A's and B's in Religion, Literature and Science. Then, BAM: C's in Media Literacy, Physical Education, Drama, and Music. Even more shocking, a D- in Health.  Health?! I knew this was not a true reflection of my son's academic skills. Right away, I guessed what the problem might be.

Me: "Kevin, what time of the day do you have Health?"

Kevin: "Right at the end of the day, after third recess.  She only comes once a week. And she's not my regular teacher. And she talks and talks and talks and I don't want to listen."

(Three problems right there: 1. He is mentally/emotionally exhausted at the end of the day from trying to hold it together all day long; 2. This is not a teacher he sees daily, and who has the time to cater to Kevin's special needs; 3. Kevin doesn't do well with lecture-type lessons in big groups.)

Me: "What do you find hard about Drama and Music?"

Kevin: "The kids get too loud.  It makes me mad. It hurts my ears.  And I don't like working in groups."

(Sigh. These are thing we already know, and try to mitigate as much as possible.)

The next day, we went to our appointment to see Dr. Ahmad.  Of course, when she asked Kevin how he was feeling, he said, "Fine," and when she asked how school was going he said, "Good."  I tried to coax a little more out of him, but I finally gave in and had to sit there and relate this whole story to Dr. Ahmad right in front of him.  I felt awful. I don't like talking about my child like he's not there, and having to focus on his negative issues, but she needed to understand the urgency of our situation.

Thankfully, she did.  Right away, when I described his symptoms and home/school struggles, she was alarmed.  When I talked about his report card, she became visibly upset. "That's just not fair," she said. "This is not his fault.  This is not a true reflection of his skills." I heartily agreed! She felt that we were right in thinking the Risperidone could be a major factor in Kevin's behavioural regression.  She even said, "I feel so bad this is happening to him." She said Risperidone has a sedative effect, so no wonder Kevin is extra tired and irritable after taking it at lunch.  Our joint decision was to wean him off the Risperidone this week. He will completely stop taking it next week. We also decided to keep our appointment at the end of the month, so we can reevaluate then how he's doing being off the Risperidone.  At the next appointment, we may increase his Prozac because that has worked well from the start, and this has all caused a spike in his anxiety issues, which also manifests itself in difficult behaviours. If he's still having problems in the afternoon, we may consider trying a new medication in place of the Risperidone.

The doctor also wanted it clearly communicated to the school that Kevin's academic drop and increase in difficult behaviours should be reviewed in context.  In fact, she took the time to type up a letter for the school, explaining the effects the Risperidone had on Kevin, and explaining why we were removing this medication.  I truly appreciated this coming from a professional although I'm pretty sure Kevin's school staff already understands our situation well.

Last night, we had parent-teacher interviews.  As soon as it was my turn, the teacher and I were on the same page.  She wanted to discuss Kevin's behaviours and the effects of his medication. She, too, recognizes Kevin's academic strengths, and understands there are no concerns in that area.  I told her about the letter (which she hadn't seen yet). Her relief was evident. She kept saying, "That medication was doing nothing for him, so he shouldn't be on it." We agreed to keep each other updated on his behavioural changes as we tweak the meds, so we can find a good balance for him at school and home.  After all our serious talk, she said, "I just love Kevin." I know she does.  I can see the sincerity in her eyes. I also know because she shared how much she does to ease his anxiety, prepare him for changes, give him the time he needs to regulate himself, assess his work based on his best efforts and not his bad days . . . She is one awesome teacher.

So, that's where we're at with Kevin. We wean him off the Risperidone this week, and hope our happy guy from September returns. As for his afternoons at school . . . ? It's still a mystery. We are all working together to find a solution to this wall he seems to hit every afternoon.

My heart hurts for him.  It kills me to see my bright, beautiful boy fighting so hard just to get through the day without it draining his spirit.

Ryan 
Ryan's story is different.

He had troubling behaviours that involved random, angry outbursts of crying that could not be soothed. He was also having weeks on end where he would be up for hours during the night, then other weeks where he'd be fine, then weeks having trouble falling asleep, then weeks waking too early.  Disrupted sleep patterns are common in autism. The regular pediatrician ruled out any obvious medical issues in September. However, at my request, we got a referral to Dr. Lenna Morgan, a pediatrician who specializes in working with children who have autism.

After assessing Ryan, Dr. Morgan suggested we get routine blood work and also genetic testing done.  To help with his mood and sleep disturbances, guess what she prescribed? Risperidone, of course! At the time, it was just an odd coincidence that within a week of each other, two different doctors had prescribed the same medication for my boys who are at two very different places on the autism spectrum.  However, Ryan's dose was put at three full tablets a day.

I was not really comfortable with this. Kevin, who's 2 and a half years older and 30 pounds heavier than Ryan, was only on half a pill. I was hesitant to medicate Ryan so heavily.  So, I decided to go with one pill in the morning and half one at supper.

Over the next few weeks, we did see some increased stability in Ryan's emotions. There was a lot less of the sudden, unexpected crying. However, his sleep was worse than ever! We went for several weeks where he was up for hours at a time at night. I was exhausted. I bet Ryan was, too.

So, at our next appointment, I told the doctor about the improvements, but also about the sleep problems.  She gave me a bit of a stern look and said, "The Risperidone is supposed to help him sleep well, too. Give him one in the morning, and TWO at bedtime."

Good things came of that appointment.  Ryan's blood work came back all clear. (Subsequently, his genetic tests came back all clear, too.) I decided to follow the doctor's instructions about giving Ryan three full doses of Risperidone a day. (Well, I did still space it a little bit: one morning, one supper, one bedtime.) The results have been dramatically positive.  Ryan is sleeping like a champ most nights, from about 8:30 PM till 7 AM (or whenever his noisy siblings wake him up!). School and Summit both report the inexplicable outbursts of crying much reduced, and he's having a lot more "happy" days in both places. At home, he is generally in a very good mood, with lots of smiles and giggles and cuddles for us.

So, when it comes to the Risperidone, what can I say?  It's the truth of the frequently used saying, "If you've met one person with autism, you've met one person with autism." It's called a spectrum for a reason.  My high-functioning child went into a behavioural-regression-tailspin on the lowest dose of Risperidone, and we're taking him off it immediately.  My low-functioning child is thriving on a dose of three full tablets of Risperidone a day. What harms one child may help another. It's a lesson I have heard before, but a lesson I learned through experience, now.

Andrea
Andrea is my wild card right now. Her anxiety and tears and aggression and rapid mood swings continue as discussed in the September post, but at least we're finally starting to get some face-to-face contact with agencies.

I was getting frustrated because I hadn't heard from the Regional Children's Centre yet, so I called them last week to ask where Andrea is on the waiting list.  Well, lo and behold, the coordinator finally calls me back this week, and guess what? Andrea was removed from the waiting list! WHY? They sent a letter stating I needed to contact the coordinator to set up a meeting to get the process started. They received my registration paperwork, but since I didn't call them back, they took her off the list. Um, I NEVER RECEIVED THE EFFIN' LETTER! (Can you tell I'm pissed off?)

When I explained this, the coordinator made an appointment to see us right away. That appointment was this morning. (Thanks, although you've already set us back months because of the missing letter. Maybe you could call next time?!) Anyway, Andrea and I went in and met with the coordinator. We went over the registration info., added a few things, and she talked to Andrea.  I told Andrea to be totally honest and not worry about what Mom or anyone else thinks because these people wanted to help her.  She was very shy and didn't say much, but her emotions came through because she was teary and a bit trembly through most of the half-hour visit.

The coordinator now has Andrea on two wait lists. One is for an anxiety group that they run for kids up to age 12. It is a 2-month group that meets weekly to discuss things like how anxiety feels, what causes anxiety, and ways to cope with it.  The other is for one-on-one counseling with a therapist for 6 sessions to start (same topics as the group, just more individual). The coordinator said we would probably hear something in the spring, and we should accept whatever comes available first. We may be able to do both if, when the time comes, we think she might need both.

In the meantime, however, I had booked an appointment to take Andrea to our family doctor next week, with the hopes of getting a referral to a child psychiatrist. I mentioned this to the coordinator, and she thought we should follow through with that.  She mentioned that most of the child psychiatrists are at Maryvale (hmm, I wonder if Andrea will see someone there, like Kevin does?).  She also asked how we feel about the possibility of using medication. (After all, that's the difference between psychiatrists and psychologists: psychiatrists medicate, psychologists are more talk-therapy). At this point, I just want to get poor Andrea some help. She's waited too long, and she keeps asking me when we're going to do something for her. So, hopefully we'll get in to see a child psychiatrist soon and get some support that way.

***

In summary: Are we Living Better Chemically? One sort of, one yes, one possibly/we'll see.

And one mom whose sanity depends on something working.

 

Potty Training

[First off, can I just say, wow, it's been 4 months since I've done a blog entry. And a busy 4 months it has been. Lots happening, highlights of which I post on Facebook, but seriously, I need to get back to blogging. It helps me clear my head.]

For a few months now, Ryan has been taken to sit on the potty at Summit Centre about twice a day. Then, they started doing the same at home on Thursdays.The idea is simply to get him used to sitting on the potty, seeing it's not scary, and getting him comfortable with the bathroom routine.

The potty routine goes like this: We take him into the bathroom and tell him to pull down his pants. He can do that independently. Then, we help him remove his diaper. Actually, as of yesterday, he started wearing pull-ups. He sits on the regular toilet with a potty seat. We help him get situated comfortably, and he has to sit for 3 to 5 minutes. He gets lots of praise for sitting nicely. We aren't expecting him to pee or poop yet. If he does, bonus.  When he's done sitting, we help him put on his pull-up and pants. Then, we go to the step stool by the sink and he steps up. A new part of the program is teaching him to "get soap" independently.  We use pump soap. So far, he only has to grab the soap. We help him pump it.  Then, we turn on the water and model "do this" or "rub hands" to rub his soapy hands together under the water. Next, we help him turn off the water and try to get him to "dry hands" independently. At home we use a towel, at school he uses paper towels and then throws them in the garbage.

As of yesterday, official potty training has begun.  At school, home, and Summit Centre, we will follow the same routine, about once an hour.

So far, it's all been at home, because yesterday was a Sunday and today is a snow day, so school got cancelled.  The good news is he's been going willingly with me to the bathroom, sitting well, and not getting upset.  Otherwise, his pull-up is wet every time I take him to the bathroom, so I know he's not ready to try underwear yet!  Also, when it comes to washing hands, all he wants to do is play in the water.  Getting him to functionally "get soap" and "rub hands" is a pain.  He's too interested in splashing in the running water and getting it all over the counter and floor. He also likes to grab the cups by the sink and fill them with water and dump them in the sink. I try to block this, and I've tried moving the cups, but he's fast!

We also have a little issue while he's sitting on the potty. He keeps reaching down to touch himself (fine, whatever), but then he'll shove his hand into the toilet water and swish it around! Ewww! Again, I've gotten pretty good at blocking that, but he's got lightning-fast moves when he's getting into mischief!

Anyway, I know this is going to be a LONG process, like everything with Ryan.  I don't expect any major developments soon. Let's be honest, I'm thinking in terms of years here.  I'll just be happy if he is eventually mostly/fully potty trained.   In the meantime, I've submitted paperwork for an Easter Seals Incontinence Grant. As Ryan gets bigger, his diapers/pull-ups are getting more expensive. Frankly, I should have applied for this last year, but I was hopeful we'd be more advanced in the toileting process.

To sum up, we are officially in potty-training mode. As you can see from my description, above, of the potty routine, there are so many little steps which Ryan has to learn.  It reminds me, once again, of the skills we take for granted. Ryan has to learn to put his pants and pull-up down and up. He has to learn to sit on the potty. He has to learn to step up on a step stool. He has to learn to get soap. He has to learn to pump soap. He has to learn to turn on the water. He has to learn how to rub his hands together. Etc. . .

And this doesn't even start to get into knowing his body, recognizing when he needs to go, having a way to tell us he needs to go . . . Sigh.  Let the marathon of potty training begin! Wish us luck and sanity!

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. ;)