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.

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!