[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.
