"Long morning ... Let's just say the therapists were making jokes about Mommy needing a drink by about 9:45 AM. Maybe Ryan heard them because he perked up a bit after that and we made it a bit past 11:30 today. We got a lot done, but I need a nap."
Well, I did not get my drink, nor did I get my nap. In fact, it was an extra long and busy day with Ryan not napping either, and then taking Andrea to an hour-and-a-half-long First Communion meeting in the evening, on top of all the usual afternoon/evening chores (cooking, cleaning, homework, etc.).
Anyway, the day started out with Ryan being cranky. He did alright when we first arrived. I tried the new tactic of taking him into the Blue Room and pulling out three items he might like to play with (as reinforcers) to see if he'd gravitate to one of them. He did. It was a little train that has beads in it that pop around down when you move it. So, that strategy of introducing some new reinforcer choices to Ryan worked today.
But as soon as we moved to the Yellow Room and set up to do work, he got mad. When D. came in to do opening song, Ryan whined and made pouty faces through the whole thing. D. asked if I wanted to move to the Blue Room because Ryan was laying by the door, crying and refusing to get up and come to do programs with me. I decided that I wasn't going to let Ryan push my buttons; I said, "No, I'm not going to let him escape just because he's mad. We're staying in here." D. was impressed, and gave me extra parent points for not giving in to Ryan's attitude.
So, I decided to try colouring because Ryan seems to enjoy that activity (I could do that much for him). He started out well, and I was pleased. I was still HOH, and he was making some nice lines on the paper, and then I would give him the new train to play with. However, D. wanted me to try and get Ryan to take ownership of holding the marker. That's where things got tricky. He would either drop the marker or flick it around on the table top. D. thought we could try it with a regular marker, to see if that might break Ryan's habit of prompt dependency and/or playing with the marker, but he still would not hold that one, either. D. went and discussed this issue with L., and they decided to put the colouring program on hold until the senior therapists can brainstorm together, and come up with some strategies to get Ryan to hold the marker independently. I could tell D. was really frustrated by this because we can see Ryan enjoys colouring, but he does minimal effort to get his reinforcement. D. jokingly suggested that we need to tape the marker to Ryan's hand. I wonder if there is some kind of accessibility product out there that attaches to the hand, that can hold a writing utensil? I'm sure there must be, but I doubt they make it for three-year-olds. I'm also not sure it fits in with what we're trying to do here. I don't know. I thought the colouring program was going well, but it suddenly became this huge issue we spent a bunch of time on today.
By the time we tried all this colouring stuff, Ryan was totally mad. We told him to "go play," and put out all kinds of toys all over the room for him, but he just sat in his chair and cried..When D. made him stand up, Ryan stood in the middle of the room and cried. Then, he kept trying to go to D. and get attention from him. D. wanted Ryan to go explore the toys, and to be sure to not reinforce Ryan's mad behaviour, so he kept gently pushing Ryan back or ignoring him, saying, "I'm busy writing my notes." Ryan eventually sat down by the big bead maze and played with a few beads, but not until he wiggled the door handle and tried to escape!
Once he had calmed a bit, I brought him back to sit with me and do the pop-up toy. He was a bit whiny, but overall, he did well with the activity. I started prompting at the forearm today, and he got two out of four closed on his own with minimal prompting. He also popped one open independently. In total, he got 3 +'s out of 6, which is pretty good considering he was so cranky, and we were working at fading back the prompt to forearm for the first time.
Next we worked on "pat head," and it was a bit of a mess. Ryan got 4/7 trials correct. He was getting mad again, and confused by which action he was supposed to be doing. However, it was nice to read, according to D.'s feedback sheet today, "Pat Head-Good job sticking with it. Your prompt levels, reinforcement, and increasing your prompts were perfect." So, although I felt a bit discouraged at the time, I guess I was doing things right at my end of the activity.
Then, we moved over to the Blue Room. Well, it took a while. We went through the range of prompts, enticements, cajoling, all the way up to iPad, and nothing worked to get him moving. We even tried saying good-bye and walking away, leaving him "alone" in the dark room, with the door open. He just started to get mad, and D. didn't want him to get scared or so upset that it would affect his work in the Blue Room. Eventually, we hauled him to his feet and guided him into the Blue Room. Let's just say "stand up and come with mama" got all -'s today!
In the Blue Room I started with Play Doh, in the hopes of cheering Ryan up. He actually did really well. He seemed a bit confused at first because his play ball of Play Doh was fluorescent orange, and I'm not sure he liked that colour. He kept making weird faces at it. LOL However, once we got started with the blue Play Doh balls, he liked those. He got all +'s for letting me HOH smooshing the balls, and he even took a bit of ownership once or twice: he has learned he can squeeze the balls with his fingers and that flattens them a bit. It's nice he's trying to figure this out a bit for himself. I also saw him rolling the balls around and sticking his fingers in it, making fingerprints. That independent exploration is fine (actually, a good thing) when he does it between trials, so it's not interfering with the actual program.
Next we tried "stomp feet" with him sitting on a chair, and the blue piano at his feet. Ugh, it was not pretty. He got 1/5 trials correct, and even that one was weak. He was totally distracted during this activity. He kept turning around in his seat to watch and listen to other things going on in the Blue Room (it was very busy). I tried to get his attention by calling his name, touching his face, putting the toy train by his feet, and so on. I might hold his attention for a second, but I quickly lost him again. He would not stomp, even when D. came over to give an extra prompt like a touch on the leg. Ryan is still totally dependent on the touch-behind-the-knee prompt. Nothing else works. I know this because he stomped feet just fine during circle, when we were sitting on the floor and I touched him behind the knees. His prompt dependency is really causing a road-block for us in several of our programs right now. Ugh.
I decided to move across the room to put away the Play Doh and set up "push train," and that's where the senior therapists saw my exhaustion/frustration, and started joking about mommy needing a drink. I replied that I should start carrying a discreet hip flask. LOL They understood that Ryan was having a rough day, and making mommy do all the work.
"Push train" went pretty well, though. Ryan was successful on 3/5 trials, and I was only setting it up and telling him to do it (verbal/visual prompts). The only reason I recorded two trials as incorrect is because Ryan was a bit awkward on those two and knocked the train off the tracks early. I have to expect more of him on this one now because I know he is capable of doing it perfectly. If he does it better tomorrow, I will probably increase the difficulty (add more train cars or something) on Friday.
Next we did the chunky puzzle, and he did awesome. Taking the pieces out has been removed from the program (he does it automatically), and putting them back in is at wrist prompt. He got +'s on all six trials, and in fact, put the circle back in, independently, twice! I will definitely be fading back the prompt on this activity by the end of the week.
It was time to go to circle, and of course, getting him up and out was a challenge. Circle time itself, though, was okay. He perked up somewhat. He was particularly strong with "Panda Bear" today, matching the pictures with the book. D. was giving him a choice of 2 each time, and I think he only got one wrong out of approximately 5 tries. In D.'s words, it was "amazing." He also sat well and did some song actions today, although they were a bit hampered by his one hand holding his chewy pendant in his mouth. He needed some chew time during circle. Hey, whatever works.
Getting Ryan to snack was another challenge. That boy did not want to transition from room to room today! D. eventually told me to get some of Ryan's snack items and bring them back to the circle room, to entice Ryan to follow me. I picked the bottle, knowing Ryan would want that most. I had to get right down and wave it in front of his nose a few times, but it did get him off his butt and back down to the Blue Room.
After snack, we worked on the shape sorter and he was a super star! I was working with him at a wrist prompt level, but he put in three circle totally independently. He also put in the other shapes well with the wrist prompt. Triangle and square are still newer and harder for him; you have to line up the edges just right to get them in. However, he was trying really hard to manoeuvre them in and had good success with a little wrist prompting.
Then we did "clapping" and he got 3/5 trials correct. The ones he got correct depended on me giving him a forearm/elbow prompt of the right hand, though. Sigh. Prompt-dependency strikes again.
Next we did "coin in the piggy bank" and it was the usual. He did well with the wrist prompt, but when I tried to fade back, he didn't have the finesse to get the coin in on his own yet. If I can't fade back by next week, I'll talk to the therapists about some options to help Ryan improve his manipulation of the coins.
Soon it was time to move into the Rainbow Room, and Ryan wouldn't budge. D. said it was time to "pull out the big guns": yes, the wagon. He wheeled it right into the Blue Room. When Ryan tried to get in, he wheeled it out the door. Ryan got a bit mad, but D. promised him (and showed him) that if he came out the door, he could have a ride. Ryan was working his eyebrows in the most amusing expressions of disbelief and consternation, but he eventually made his way out to the wagon, and got his ride.
After the wagon ride, we did some "kick ball." We started out with him sitting in a chair, and his kicks were great. As soon as he saw the ball by his foot, he gave it a good kick. D. kicked it back to Ryan a couple times, and Ryan tried to kick it back to D. That was good motor skills and good interaction! Then, we tried him kicking the ball standing up. He had a bit of a hard time concentrating at first, but then did a few good kicks from standing, so it was a success.
Then I ran through the "mixed" trial of the different hand/arm actions that Ryan keeps confusing. As usual, high 5s were fine, but everything else was muddled unless I gave him the exact prompt he associates with the given action. Grr. On the plus side, in the middle of this muddle, I got an independent clap. That was a nice surprise.
So, it was about 11:20 by this time, and Ryan was starting to lose his energy, and show some attitude, again. D. suggested re-running one more program (an easy one), so I got out the pop-up toy again. Ryan did it with some whining, but it was okay.
However, as I was writing up some notes in preparation for tomorrow, Ryan took off across the room and settled himself in the wagon. Then he started to cry because he really wanted a wagon ride. L.A. kindly offered to take Ryan and J. for a ride together. Once I got my notes done, I hopped up and followed them down the hallway. L.A. knew our routine of pausing the wagon and waiting for Ryan to sign for "more." I think he needed a physical prompt once or twice, but for the most part, he knew to ask for "more" as soon as the wagon stopped. I had to laugh because J. had L.A.'s iPhone and was playing a game on it while they were in the wagon, and Ryan would lean across once in a while to peek at the screen. It was too cute.
As for Mr. Ryan, he did not nap this afternoon. The negative effect is that he was cranky most of the afternoon, but the positive is that he was asleep by about 9:30 tonight, Finally!
Thoughts on Sibling Involvement
Sorry, I know the longer the day we have the longer the entry already is, but I wanted to comment on Ryan's siblings' growing interest in being involved in his "homework" and communicating with him.In some ways, it's a good thing. For his incidental goals like "waving hi," Andrea is (and sometimes Kevin, too) stepping in and being the other person when I need it. They also think it's fun to get high 5s from Ryan. Furthermore, Andrea likes to stand by and give him his reinforcement, or even set up an activity like putting the ball by Ryan's foot and telling him to "kick the ball." I'm pleased that they want to help. I'm happy that they are excited about trying to communicate with Ryan. I also think it's good for Ryan to generalize his skills with his siblings.
However, Andrea and Kevin can be a little too enthusiastic sometimes. Kevin, for example, will jump into the program and start doing things his own way, or giving Ryan the reinforcer when it's not appropriate. Andrea, on the other hand, tries to run programs when we don't need to be running them, or when Ryan is having a break. She thinks she knows everything because she's watched me do programs with Ryan, and even helped a bit. She also gets offended when Ryan won't respond to her ("He doesn't like me!").
Similarly, they push Ryan too far sometimes. I know they are just excited that Ryan is starting to communicate with them on a certain level, but they can demand too much. For example, they get into high 5 competitions, where Andrea will ask Ryan for a high 5, then Kevin will, then Andrea, and they keep going to see who can get more from him. To them, that means he "likes" that person more. Well, poor Ryan just gets overwhelmed and fed up after about 8 high 5s in a row between the same two kids. Who wouldn't? I often have to remind them to "give Ryan some space" or "give Ryan a break" or say, "Ryan's had enough for now."
Then again, to give Ryan some credit, he does try to show them when he's had enough. He might make a mad face, or push them away, or put his head down. The difficulty for me is teaching a 7- and 5-year-old how to read their non-verbal brother's body language.
So, as with everything on this journey, it's a mixed blessing: I'm glad they want to interact with Ryan, but I need to figure out how to help them interact with him appropriately. It's hard enough getting a family of neurotypical kids to interact with each other appropriately . . . LOL
Andrea: Sensory Issues?
Oh, why not go for it while my mind is running through all this. So, this one has been on my mind for some time, but the urgency of the question had increased over the past 6 months: Does Andrea have sensory issues?She clearly suffers from anxiety, but some of her reactions to things lately remind me a lot of the way her brothers react in certain situations. And people can have sensory processing disorders/difficulties without having autism.
Here's a list of some things I've noticed about Andrea that make me think she might have sensory processing difficulties:
- She hates the sound of pencils that scratch on the paper. We have certain pencils that totally freak her out and distract her from doing homework.
- She hates the feeling of the paper pages in paperback novels. We have been reading some chapter books from home and she gets upset that she has to hold the pages down; she licks her thumbs until they are soaking wet to press down the pages, so it lessens the sensation of the paper on her skin.
- She gets overwhelmed when Kevin gets into his repetitive noises, and starts to scream at us to make him stop.
- When too many people are talking at once, or when someone is giving her directions/commands, she often gets overwhelmed and yells, "Okay, okay, okay, okay!"
- Slow music makes her sad, and she cries.
- She is constantly putting things in her mouth: her hair, her fingers, her headphone wire. She even asked to have a chewy like Ryan's. Instead, I offered her a chew tube he doesn't use.
- She is totally freaked out by Daddy's "belly fur." I thought it started out as a joke, but she actually screams and gets really upset, and refuses to go near him, when he has his shirt off. (Seriously, he's an average man. His body hair isn't abnormal.)
- She has started to suck on her arm when she is anxious. She says she does this at school.
- Her teacher mentioned she has seen Andrea bunching up the top of her shirt and sucking on it when she's getting anxious.
Who can we go to for help with these questions? Just a year or two ago, a school social worker would've been a great resource for us. Now, they don't have them anymore. I have been trying to research resources for primary, school-aged children with Andrea's symptoms, but I'm stumped.
Plus, I feel awful saying this, but it's true: I just don't have the time/energy resources right now to start on a whole new journey of research/referrals/meetings/therapy for another child. I want to help Andrea, but I'm overwhelmed. Sadly, I often react to her outbursts with frustration or anger because I feel so helpless. I think she understands that I do care, though, because we often talk after and apologize to each other, or explain our feelings and why we acted the way we did.
I knew motherhood would be complicated, but holy smokes . . .
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