Thursday, January 31, 2013

Unity Day 4: Sigh of Relief

From Facebook:

"Better day today! We still ended at 10:30, but it was on the grown-ups' terms, and on a positive note. Saw some good things today as we worked on "manding" (teaching Ryan ways to make requests). Both Ryan and I were smiling as we came home today. ;) "

I was feeling apprehensive as we left this morning, since Ryan was awake most of last night, then fell asleep at  6 AM, and I had to wake him at 8 AM to get ready for Unity. He was sleepy, cranky, and didn't want to eat a lot of breakfast. We arrived at a good time, but it was starting to snow, freezing and windy, and someone has taken my reserved parking spot. Grr.

Surprisingly, Ryan perked up as soon as we got into the Centre.  I put him on the rocker teeter-totter to keep him happy (and contained!) while I put our things away and prepared for the day.

A twist was added to our day when we discovered that both the usual lead therapists for Unity were away today, so we'd be working with other lead therapists today. Ryan and I were working with D., a low-key, easy-going guy with whom we both quickly became quite comfortable.

The ultimate goal for today was simple: end on a positive note. This way, Ryan will not be learning to associate his crying with, "If I cry, I get to go home." In fact, this is a general principle for all the activities we do at Summit Centre: it's better to do less and end on a positive note than do more and have the child make negative associations with it.  Plus, if we leave when Ryan's happy, we're leaving on Mommy's or the therapist's terms, and not just because Ryan is trying to manipulate us with a tantrum.

Anyway, our day started in the Blue Room again going through his reinforcers (to make sure they're still valuable/interesting to him), with a focus on "manding." Manding means the child makes their own request for something in an appropriate manner. For Ryan, we decided to start manding by showing him how to touch the item he wanted with one finger--the prelude to pointing.  We also accepted if he gently touched the item, but he was not allowed to grab.  We used the reinforcers to encourage him to ask for them.  The trick is, you can't ask, "Ryan, do you want the rattle?"  You just have to hold it in his vision, maybe rattle it a bit, and wait for him to initiate the request by pointing or touching. Of course, his natural instinct is to grab, but that's not an appropriate response, so he can't have the rattle.  If he insists on grabbing, we take his hand and help him point or tap the item.  Then he gets the item and verbal praise. We did a lot of hand-over-hand (HOH) modeling today, but even him allowing us to do that is a step in Ryan's learning process.

D. also did some trials of Ryan's tracking. If Ryan was playing with one toy, and D. used another favourite toy to make a noise, would Ryan look up and follow the sound of the new toy?  He usually did, which is a really good skill.  D. also took some of the toys and hid them under a basket, with Ryan watching. Would Ryan lift the basket to find the toys?  It took him a minute and some verbal prompts, but he did do it--another plus.  Then we tried a bit more manding.  Ryan likes pinwheels, whether we are blowing them, or he can spin them with his hands. D. tried blowing the pinwheel a few times, then pausing before he blew, and looking at Ryan expectantly, waiting for Ryan to make a request for him to blow some more.  Suddenly, one time D. did this, Ryan pursed his lips and let out a little puff of air!  We were so excited!  We got him to do this a few more times, and even accepted approximations (like if he pursed his lips in the blowing gesture).  Even if it was inconsistent, I was stunned: I've never seen him do something like that before!

D. then tried to see if he could get Ryan to begin participating in some clean-up skills. He got out a bin of chunky beads, showed them to Ryan, then put some on the floor. Then he modeled how to pick one up and put it back in the bin.  He gave Ryan a bead, and HOH helped Ryan put it in the bin. Then he let Ryan choose a bead, and just put his hand in the bin to direct Ryan where Ryan should put the bead.  Ryan, of course, just wanted to mouth the beads, and got a bit irritated. However, he did let D. help him put the beads in the bin, HOH.

One thing I really liked is that they have come to understand that Ryan has limits, and works better when he has a break to do as he pleases now and then.  So, after the clean-up trial we just let Ryan play with his reinforcers for about 5 minutes without intervention, and voila--he was a much happier and cooperative little man.

Next it was circle time, and D. ran circle. Once again, I was truly pleased with the adjustments they made for Ryan. "Itsy Bitsy Spider" was removed from the line-up, and when D. sensed Ryan was getting agitated, he quickly removed about a third of the circle-time items off the board (it's a poster with velcroed-on pictures representing the circle-time activities), and skipped to the end. Ryan was a little less involved in circle today, but at least he didn't cry; he just whined a bit once or twice.  He tried to get up and walk away, but we encouraged him to sit, and he got reinforcement for sitting with us for circle.  A funny thing that happened was D. discovered a great reinforcer for Ryan by accident:  he waved the circle time board at Ryan to get his attention, and it made a breeze. Ryan laughed: he loved it!  So, all through circle, D. reinforced Ryan's positive attempts and behaviours by fanning him with the circle time board!  Actually, the other little guy liked it, too.  D. said we'll have to find a way to work that into Ryan's basket of reinforcers. It's so amazing how we can randomly stumble upon things that work!

Ryan was in a stable mood after circle, so we decided to do his snack a bit early (keep the positive times rolling).  Snack was awesome!  He ate a whole cup of yogurt and was happily letting me HOH his spoon feeding.  D. was also pleased that I was giving Ryan verbal models when he would make noises like "Mmm" (I would say "More!") and "Umm" (I would say "Yummy!").  Ryan was also making sounds like "Mmm" or "Ahh" when he wanted more Gerber rice puff stars (nice manding!), and he was taking them nicely and attempting to chew.   I think yogurt and star puffs are going to be our snack time staples now.

After snack, we tried the Snoezelen Room to see if that might be something we could use to soothe Ryan when he needs a break from the program. Briefly, a Snoezelen Room "is a therapy for people with autism or developmental disabilities. It consists of placing the person in a soothing and stimulating environment... . These rooms are specially designed to deliver stimuli to various senses, using lighting effects, color, sounds, music, scents, etc. The combination of different materials on a wall may be explored using tactile senses... .- the focus is to assist users to gain the maximum pleasure from the activity... . An advantage of Snoezelen therapy is that it does not rely on verbal communication and may be beneficial for people with profound autism, as it may provide stimulation for those who would otherwise be almost impossible to reach" (Wikipedia). Ryan liked the textured carpets on the floor, and lay right back on the little rocking bed with his arms up behind his head, but he wanted to go explore other things after a minute or two. Maybe we'll try it again in the future.

Finally, we went into the Single Treatment Room (STR) to play with some toys, work on manding, etc.  While we were in there, D. was tickling Ryan's face. To get Ryan to ask for more, he was showing Ryan the sign-language motion for "more" while also saying it.  He would get his hand into tickle position to set up Ryan's anticipation, and then model "more" with signs and verbal for Ryan.  After D. did this several times, we saw Ryan attempting to put his hands into the "more" gesture 5 or 6 times, all on his own! But then he really shocked us.  D. set up the tickle motion with an expectant face, and Ryan clearly said, "Mow."  I thought I was hearing things until D. got totally excited and praised and hugged Ryan (while giving the requested tickles, of course). We heard a quiet "mo" one or two more times.  We also got him to give D. a few high-fives to get some squeeze-cuddle reinforcement (we also stumbled onto that reinforcer today: Ryan loves deep-pressure squeeze and massage). He couldn't do it for Mom, though, because he was starting to get worn out.

When he started to fuss and wander, D. said, "I know what you're doing, and you're not leaving till we've got you happy again!"  D. had an idea. He went and got some bubbles. As Ryan and I left the STR, D. went ahead, enticing Ryan to follow him, with bubbles! It worked. Ryan stopped fussing, and was intrigued, as we headed over to get our coats.  While Mommy got things ready to go, D. played bubbles with Ryan until Ryan was smiling and grabbing at them, and even reaching out to request more. By the time I went to put on Ryan's coat, he didn't want to leave; he wanted to stay and play with more bubbles! D. said this was the perfect time to end: Ryan was having a great time, and he was leaving on our terms. Ryan was all smiles as we left, and I was so happy at how well our day had gone.

I felt a renewed sense of "This will work!" and happiness as we left Summit Centre today. :)

Wednesday, January 30, 2013

Unity Day 3: Frustration and Tears

From Facebook:

"Day 3: Frustration and discouragement. Couldn't get Ryan "emotionally regulated" in order to get some productive interaction. We did circle time first and he did well, but it was downhill after that. We had to call it a day at 10 AM. :( "

The day started off with promise.  We got there a bit early again, and I took some time in the Rainbow Room (gross motor skills) to try out some of the items/activities with Ryan.  He liked the slide and a nubbly ball like the one we already have at home.  However, he got mad as soon as I made him stay in the single treatment room with me so I could take some notes/do some recording for this week's "homework."  Once I allowed him out to wander the Rainbow Room again, he was fine.

Today, we tried to do circle first instead of later, to see if it was the timing that was bothering him: Was he too worn out for it at 10:15?  It seemed to work very well.  Ryan was picking up the pieces and placing them on the stories and Velcro boards (with some prompting) for "Bear Went Over the Mountain," "Where are the Farmer's Animals?" and "Brown Bear, What Do You See?".  During "Wheels on the Bus," he (with prompts) high-fived the therapist [Shall we call her L.?] for "The horn on the bus goes beep beep beep," and he (without prompts!) lifted my hands up and down for "The windows on the bus go up and down." The other mom made an observation, which surprised me, but I realized she was right: Ryan seems to get upset as soon as we do "The Itsy Bitsy Spider"!  It's near the end of circle, like the 3rd-last song, but it still seems to set him off. Weird.

Then we went into the Blue Room, which is where we work on fine motor play and sensory (we also have snack in there at 10 AM).  We were still trying items to find what reinforcers Ryan likes there, to show him the appropriate way to play with certain items, and to see if he would attempt some of our goals for him. Those goals include making choices by reaching for one item over another; imitation of how to use the item; picking up things he had dropped; handing things over when someone requests them; putting only "Ryan's reinforcers" into his mouth, and responding well when we blocked him from mouthing other items; etc.  

On another point, we are going to try getting some kind of clip-on chewy thing for Ryan that he can mouth whenever he wants. That way, he won't get upset when we block him from mouthing inappropriate items, and he can get that comfort and sensory input whenever he needs it.


In the Blue Room he was starting to get tired and was leaning back on L. and I, but we got some interaction.  One time he rolled a car across the floor after I showed him a few times.  We found out he still loved the dried beans, and now dried pasta, for running his hands through (this guy is what they call "sensory"; he loves stuff that gives him sensory input--texture, flashing lights, vibrations, spin, etc.) L. also tried to have Ryan hand her things, but he responded better when Mommy asked for it. He handed a little train car to me 2 times in a row when I held out my hand and said, "Ryan, give it to me."

Suddenly, though, Ryan reached his breaking point. He went from tired but participating to total meltdown.  He was sobbing and trying to lay down on the floor, and refused to participate any longer.  We tried his reinforcers, but that didn't calm him. We tried cuddling, but that didn't calm him.  We tried just leaving him alone and letting him wander for a minute or two, but that only calmed him for a minute or two.

I had told them today that Ryan's favourite activity at home was the rocking chair, and asked if they had anything like that in the Rainbow Room (gross motor).  Yes, they did. So, we took him out to this little rocking/teeter-totter type thing and put him in.  He was crying off and on most of the time, but L. and I could both see that it was helping Ryan a bit.  When L. sang softly and rocked him, he responded a bit better; he also liked it when she rocked him kind of silly and tapped on the rocker while she sang a silly song at the same time.  During that time, when he'd have a calm moment, L. was trying to get him to give her high-fives when she would pause and hold out her hand, and give a verbal prompt.  He did it a few times, in between the bursts of sobbing.  She also handed him a plastic bowling pin and tapped it on the rocker, while he held one, to see if he'd imitate; I think he attempted once or twice.

By that point, Ryan was just a mess: exhausted, bawling, snot everywhere.  L. said it was time to go home.  

As we got ready to leave though, L. and I both noticed something: Ryan started to settle as soon as he saw Mommy getting the coats. When I had put on his coat and grabbed our bags, he actually smiled. Then he laughed. L. and I realized, at the same moment, that Ryan just might be playing us here! Perhaps he has figured out that if he cries hard and long enough, he gets sent home.  Well, if that's the case, then we're onto him!  We looked at each other and she said, "Okay, if he seems fine once you get home, and stays emotionally regulated [no roller coaster mood-swings], try some of the things we were doing here today. If he responds well and doesn't get upset, we may be in for some rough times ahead.  We may have to just let him cry and cry, and tough noogies!"  I responded, "Tough love?" and she said, "Yep."

Guess what? Ryan was happy 95% of the car ride home (only got fussy when I stopped for a coffee), was in a great mood since we got home, and gave me several high-fives and great eye contact from the comfort of his rocking chair at home.  Oh, boy.  I think we are going to be in for some tough days ahead. I was already sweating and stressing today when he kept crying. What will I do when we have to ride out morning-long, recurring tantrums from my normally even-tempered, easy-going little guy?

Someone I know had warned me that his wife (they have an autistic son) said the hardest part of this is watching your child get upset, forcing them out of their comfort zone, knowing you are doing it for their own good, but still . . . It is hard to see them so upset.  I know now he was absolutely right.

On a physical note, we are torn between whether Ryan is physically weak, used to being lazy, or a combination of the two. He always wants to slump back against someone when we do circle or play on the floor, and when it's time to stand up, I have to pull him up.  We tried to prompt him to stand up on his own (because we know he can!), but he stood half way up with me holding his hand and L. holding his butt, and it took about a minute before he would fully stand on his own. (?) We are going to try getting him to stand, when prompted, from sitting on a chair tomorrow.

One last thing: we finally have our assessment with Dr. Saunders on Saturday.  We were supposed to do this before we started Unity, but it didn't work out for us.  I am very curious to see what he has to say about Ryan's diagnosis.  Ryan hasn't been formally assessed in almost a year and a half, and diagnoses can change. I am especially curious to see if Dr. Saunders will be able to unravel the mystery of Ryan's intellectual abilities, or if it's still too early to know. We shall see.


Tuesday, January 29, 2013

Unity Day 2: Improvements

Today's post, once again, is snippets from Facebook:

"Unity, Day 2: Improvements: We got there early. Ryan was in a happier mood. We got him to pick preferred toys between a choice of two. He helped me feed him snack (hand over hand). Circle Time: He did great for 80% of the activities--held pictures nicely, was excited about songs, and even rolled a ball back to others without being prompted. Of course, the last part of circle ended in another sudden meltdown . . . So, we might try circle first tomorrow, to see if timing is the issue. We also learned he likes a wagon ride for calming (to a point), and he will cuddle with anyone who remotely resembles Mommy (brown hair, round face, and/or "squishy," as a lead therapist tongue-in-cheek referred to herself . . . LOL!). So, we lasted about 15 minutes longer today. Slowly . . . we are slowly building it up . . ."

"Oh, forgot to add that he ate 3 Froot Loops at snack time. The crunch threw him off for a bit, but the flavour made him stick with it."

Oh, and there was a little praise for Mommy, too: I was quick with the reinforcers today and caught many opportunities to reinforce (think of it as rewards for when Ryan attempts or does something well). I also got 11 points! Yes, there is a parent point system. We get reinforced, too!  We can use our points for things like extra one-on-on consultation time, reinforcement items for the kids, or circle time supplies and activities already made up for us (eventually, we will be organizing and running a circle time  by ourselves!).

By the way, did I mention Unity is done by two families at a time? For confidentiality reasons, I can't share names or details about the other family, but I may mention them indirectly now and then. It is another mom and another boy whose birthday is only about a month from Ryan's.

In terms of picking up the kids today, I turned to Papa for help. Ryan is exhausted, but he barely naps. I think his little brain is going overdrive right now. He slept about 20 minutes, woke up screaming, then fell asleep again in the rocking chair. I just laid him down again, after calling Papa to ask him to pick up Andrea and Kevin.  Poor Ryan; he's so used to being left to do as he pleases because he's so easy-going.  All of a sudden, people are in his face every second, making demands of him, exposing him to new environments and routines, and he is overwhelmed.  Today was better than yesterday, though, so I'm sure each day he will become more accustomed to our new program.

Unity Begins: Day 1

What is UNITY?

 
Unity is an Intensive Parent Training program at The Summit Centre for Preschool Children with Autism:

for select parents of children with ASD, under 5 years 8 months;
high-quality intensive ABA training to selected parents so they can effectively teach children;
parent & child attend together 5 mornings per week for 12 weeks; and
monthly follow-up consultation group.
 

And what exactly is ASD?

ASD means Autism Spectrum Disorder. ASDs are developmental disorders characterized by
 
Low social interest
Disordered language and communication skills
Stereotyped behaviour and restricted interests.

 
 

Okay, so, what is ABA?

Applied Behaviour Analysis (ABA) is a systematic method of
Selecting teaching Goals
Breaking tasks into small steps
Repetition of teaching
Positive reinforcement
Keeping precise track of progress
Teaching children to apply their new skills in all settings.
 
Thanks to The Summit Centre website for the basic outline presented above. :)
 
***
 

A Few Notes to Get us Started

  • It is Ryan, our just-turned-three-year-old, who has started the Unity program with Mommy.
  • Mommy has taken 3 months off work to dedicate herself full-time to Ryan and the program.
  • Yesterday was our first day.  For the first few days, I might just be posting snippets of things I've shared about our Unity experience on Facebook. I hope to share more details in the future, but who knows? It might all be random snippets, because this is intense, mostly mentally and emotionally, but sometimes that can make you more exhausted than physical strain, right?

 

 

First Impressions of Day 1 (a.k.a. Panic Mode!)

As posted on Facebook, yesterday afternoon:
 

"Morning 1 of Unity was--well--sorta crazy. I left 15 minutes extra early and we still arrived 10 minutes late (bad weather and no parking); I didn't notice Ryan had lost a shoe as I carried him in; I left our bags in the car in my rush. Then we ended the morning at 10:45 because Ryan went into meltdown at Circle Time. He was done. In between things were okay. Ryan was fairly cooperative, we found some toys he liked to use for reinforcement, and I even got him to take a sip of milk from a cup at snack time. He liked running his hands through a tub of dried beans but he also got them everywhere. The therapists thought it was great. All I saw was an embarrassing mess. It's definitely me who needs to relax and change my way of looking at things, because the staff insisted he had a great first morning and did a lot more than they expected. I think Ryan and I are both exhausted and glad to be home, though. 12 weeks of this? Yes, if this is just day 1, it's definitely going to be intense!"
 
Ryan had to come with me to pick up the kids after school, too. He didn't like the waiting in the car. Plus he didn't nap enough. Surprisingly, Kevin came through as a great helper, holding the iPhone in the car while it played some YouTube Thomas video for them, as I stepped out for a few minutes to get Andrea.
 
I need to add, on a lighter note, that I found several dried beans in Ryan's shoe when I removed it at home, but it gets better:  I found some in my bra when I undressed last night!