Today seemed a good day to do an update, as I had Ryan's monthly meeting with his senior therapist yesterday, and he did some amazing things today, but we've also got some problematic behaviours to sort through right now. All in all, there's lots going on in Mama's head today.
Let's start with the positives:
This morning, Ryan had some pleasant surprises for me during his homework time. First, when we were working on tracking a preferred object, I noticed his accuracy has improved drastically over the past month. What we were doing before was having him pick a reinforcement (he almost always chooses his Ritz Bits). Then, I would place 3 clear cups out, and put the item under one of the cups, clearly showing him which one. Next, I would move the cup one time and say, "Find the cracker." He was usually accurate with the clear cups, so we'd start with those, and if he got it right a few times in a row, we'd move on to the same thing but with solid (opaque) cups. Now, the solid cups have a sticker on one to help him identify which is the correct cup. Even with the sticker, his accuracy was usually hit and miss. Here's a video from a few weeks ago of him tracking the cracker.
He's been doing so well with this the past week or so that I decided to skip the clear cups, and go straight to the opaque ones. Then, he was doing so well (not a single error in all of his trials) that I decided to turn the cup with the sticker, so he couldn't identify it by the sticker as I moved it. He was simply tracking where I had put the cracker (remember which cup it was under, and follow it, then choose the proper cup when asked). I was amazed that when I removed the visual prompt, he only had one incorrect choice the rest of the time we did the program! I was so thrilled. Only two weeks ago, his responses were inconsistent even at the clear-cup level. [I don't think I'm supposed to increase the difficulty of his programs like that, but when he's doing well, I can't wait to test him a little more. Sometimes, like today, I get pleasantly surprised!]
But what really floored me today was what happened when I was setting up his PECS program. For PECS, he is at Stage 2-3, where he is taking a picture and showing persistence in bringing it across a distance and handing it to someone to request the item in the picture. Normally, we do a preference survey where I take things out of his reinforcement basket to see what he's interested in, and when he picks an item, we use only the picture for that one item on his Velcro PECS board. I give him the card, then take the item and go across the room. If he wants the item, he has to pick up the PECS picture, bring it to me, and give it to me (again, he almost always picks Ritz Bits). Here's a video of PECS homework from a few weeks ago.
This morning was different because Ryan took the initiative, literally, into his own hands. I was setting up the program. I hadn't even done the preference survey yet. I had several PECS on the PECS board which was sitting on Ryan's work table. I was over by my bed. Ryan picked up the PECS board and pulled off each of the pictures, one by one, until he was holding "bubbles." Then he walked over to me by the bed, and he handed me the "bubbles" card. It was so exciting! A spontaneous request! Of course, I immediately ran across the room and got the bubbles from his basket, blew him a bunch, and went crazy with descriptive praise. ("Ryan wanted bubbles! What a wonderful job you did asking for bubbles!")
But there's more. When I did the preference survey, I had put three of the PECS back on the board. I asked Ryan, "Which one do you want to work for?" and instead of reaching into his basket, Ryan tapped the Ritz Bits picture on his PECS board. He has never done that. We usually only work with one picture on the board. And here he was, clearly making a choice and request from one of three items. Holy smokes!
He wasn't done surprising me yet. In the middle of our PECS program, I was across the room with the crackers. He had the crackers picture in his hand, and as he walked by the place where I had put some other random PECS on the floor (out of the way, I thought), he stopped. He put down the crackers picture, picked up the "bubbles" picture, and brought THAT one to me. He clearly stopped, changed his mind, and made a spontaneous decision that he wanted "bubbles" instead. Wow. Just wow.
On the other hand, we've had some challenges, lately, too:
You may have seen my Facebook posts lately about struggles regulating Ryan's sleep habits, or how he's had some pretty rough home therapy days over the past few months. Well, it isn't just at home. Ryan's been having a lot of rough days at Summit Centre, too. The main problem is crying. It is very loud, very angry, uncontrollable crying. The odd thing about it is that it doesn't seem to be negatively affecting his programs. He is still making progress, and his data shows he is doing consistently well on all his programs. This video I got of him at the Centre this week is a good example of that. He is upset for an unknown reason, and crying, but he still pedals his little tricycle down the hallway with the effort and accuracy expected from him at this point in the program. [By the way, I was thrilled to see this; it's the first time I saw him ride a tricycle!]
At Summit Centre, they've been tracking Ryan's crying to see if they can find a pattern. There are none. They have tried every ABA and calming technique they can think of, but nothing seems to help him on a consistent basis. Something might work or a while, but then it suddenly stops working. They've adjusted his programs, reinforcements, work locations, expectations, and the amount of demands placed on him; they've tried the Snoezelen room, rest breaks, more frequent play breaks, quiet rooms, pleasant sensory input, etc. There simply seems to be no rhyme or reason behind these outbursts, and unfortunately, we've been going through the same thing at home. Even when he's had enough sleep, he still has these days, so sleep issues clearly aren't the only factor.
As I said, our main concern about this is not its effect on his programs (which appears to be minimal). We're concerned about RYAN. What is bothering him so much? Why is he so upset? We don't want him to be unhappy. :( They also acknowledged that it has to be very overwhelming and stressful for me and the family (it is), and they want to help us, too.
Since we've exhausted all the therapy/behavioural/relaxation angles in this situation, Ryan's senior therapist made a good suggestion: it's time to investigate the medical. We've got a sweet little non-verbal guy here. He can't tell us what's wrong. What if it's something that we can't see? It's time to get him in for a thorough check-up by a good doctor.
Of course, nothing is that simple in our lives! I called Ryan's pediatrician as soon as I got home from the meeting and asked for an appointment. Their response: "Oh, it's been over a year since we've seen him. That means he's like a new referral. So, we're booking in September . . ." WHAT?! I'm sorry my kid is generally healthy (besides the autism), so we haven't had to grace your office! I was not happy, but the receptionist was an "it's official policy" type. I gnashed my teeth for awhile, then fired off an email to Ryan's senior therapist with this unwelcome news. She was stunned, but made the suggestion that I call back and ask if we can be put on a cancellation list or something. I'm doing that on Monday, now that I've had time to collect my thoughts. Oh, and here's more irony: I might have been able to bring him into our family doctor, but SHE referred him to this pediatrician when she found out he was severely autistic because "his case was too complicated" for her. Lord, help me.
Anyway, moving forward:
Good things that came out of my monthly meeting with the senior therapist: 1) Ryan continues to do well and make progress in his programs. 2) We're going to try and get another transition-to-school meeting together in August to iron out the final details. 3) We are seriously considering starting some potty training! Yes, you read that right. They tracked his wet diapers for 2 weeks and did see a pattern, showing he seems to hold it sometimes, and we can work with that! They also noticed (and I have at home, too) that he is more aware of his diaper (grabbing at it if it's wet, that kind of thing). We've also now got him removing his shorts/pants by himself when prompted. Like everything else, this will start out simply. We will probably just get him used to sitting on the potty for short periods of time with no expectations simply to get him used to the action and surroundings.
Finally, Ryan was having a bit of a rough day today. Again, it was the angry crying for no apparent reason. :( I had been lax in my exercise this week, and it's such a beautiful afternoon out, that I decided to take Ryan out for a long buggy ride (well, as long as he would tolerate it). Pfft, no worries there! We were out for an hour and 20 minutes! I walked down to the Forest Glade baseball diamonds, past his future elementary school (to refamiliarize him), and back through the trails through the parks there. At the baseball diamonds, we stopped for 5 minutes to chat with one of Andrea's friends' parents. Later, we stopped at the park by the Forest Glade library for about 10 minutes. Ryan and I climbed up the climber together and went down the twisty slide together (he liked that), played a little music on the piano keys on the climber, and went over to check out the swings. Here, Ryan had another first: he was swatting at the baby swings like he wanted up, but I thought, no way, you don't fit in those anymore! You always get stuck! So, I took him over to the big kid swings and said, "Ryan, let's give this a try!"
He did great! I thought he would be scared, but he let me lift him and securely park his bum on the seat. Then, I helped him hold on and stood behind him. I supported his back and elbows and gave him some tiny pushes. He liked it! I felt that was enough for a first time, so then I let him just sit and get used to the feel of the swing. I would say he felt pretty secure because his toes were touching the ground, and he decided he only wanted to hold on with one hand (as you can see above). He let go with both hands just once, and startled himself into quickly grabbing hold again. Don't worry; Mommy was right there to make sure he was safe. :)
He was ready to move on, so we headed back to the stroller. He paused mid-walk in front of this hippo, and I had to laugh at the angle. It looks like the beast is about to devour him, and he's oblivious! ;)
We walked back home. We'd been out for about 55 minutes. I asked him if he was "all done" or wanted "more"? He just got mad so I figured, okay, he's done. We got in the garage, I took him out of the stroller, and started to unload a few items from the stroller. What does Ryan do? He climbs right past me, back into the stroller, parks his butt, and clearly signs, "More!" What could I do? I couldn't deny that clear request! So, I buckled him back in, and off we went again, for another 25 minute walk. Oh, that boy. I love him to pieces. <3
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