Speaking of "Speaking" . . .

In my big, update post earlier today, I mentioned how Ryan is making more word-sounds. Well, this afternoon, Ryan was playing in Andrea's room, and I went to see what he was up to.  Usually, he gets into a lot of mischief in her room! This time, he was on her bed, bouncing on his knees. (Her bed squeaks a lot, so I bet the combination of motion and sound is appealing to him.)

I went to get my phone to get a video of him bouncing; although it's not something I condone, it was kind of cute how much fun he was having. With the camera rolling, I playfully scolded him, "Ryan, are you supposed to be bouncing on Andrea's bed?" Not expecting a reply, I answered my own question with a thoughtful, "Noooo . . ." But without missing a beat, I swear Ryan replied, "Yep!"

Even though his back was to the camera, you can plainly hear his response.  This is one of those times when it's just too clear, and too perfect timing, to dismiss it as a coincidence!

I know this kid has a sense of humour. It looks like he might be a bit sassy, too! ;)

Ryan's First Week Back to Daycare (and Work, for Mom); Serious Reflections; Andrea and Kevin

The good news is that Ryan's transition back to daycare has been excellent.  Every day the teachers report he has had a great day, that he's been happy, and that he's eating and sleeping well.  Admittedly, I thought Ryan would be a little sad or unsettled by the change.  Apparently, he's loving being back at his regular daycare.  In fact, most days when I go in to bring him home, he starts to cry!  Jeez, that makes me feel great (sarcasm!). 

The first day I went to pick him up, he was snuggling with one of the teachers who was folding laundry on the carpet.  Another day, he was playing in his new favourite centre, with plastic flower pots, flowers, and real potting soil.  Another day, he was stretched out on a little couch, relaxing with a bottle.   They report he enjoys outside time, too, either running around or rocking back and forth on a ride-on toy.  They say he's doing well with feeding himself with the spoon, although it's very messy!  They are trying to teach him to drink from a sippy cup with a straw.  So far they haven't had luck, but are determined to keep trying.  I think they could do this, because Ryan likes straws (well, chewing on them), but he also knows the sucking action from the bottle. They also approve of his "chewelry," and have even asked for a spare one in case we forget to put one on him one morning.  Apparently, he has taken to going up and "munching on his teachers"; not in an angry/hurtful way, but he will go up to them and start chewing on their clothes! (He has done this to me and Andrea recently, too.) So, they find redirecting him to his "chewelry" works well.

Generally, things are going incredibly well.  There are a few little things the staff is wondering about, like Ryan has woken up twice during nap this week, really crying hard, but all they have to do is pat his back, and he goes back to sleep. Nightmares?  Also, Ryan is not signing for them.  Or, if he does, he seems to be getting them confused. They say he often pats his head,  but this was an imitation, and not meant to be a sign. I've seen this at home, too. "Pat head" has suddenly become Ryan's catch-all sign for when he wants to communicate something (although, like I said, it's not really a sign).  I have even seen him "pat head" when I wave bye-bye to him, and no one is there to prompt him. Hmm.

Anyway, I think Andrea put it quite well when she said, "I think Ryan likes this daycare better than his new school [SC] because they don't make him work so hard!"  It appears to be true. I'm glad Ryan's had such a happy transition back to daycare, but I'm conflicted because I know he needs to continue intensive therapy.

And I just don't have the time to provide it.

Thankfully, my transition back to work has been really smooth, too. I have two nice groups of students, and the staff and my former students have given me an incredibly warm welcome back.  However, I find I am exhausted and headachy at the end of each day. Then, by the time I pick up the kids, get them home, clean up the house, feed them, do homework with Andrea, and do anything I need to prepare for work the next day,  I am utterly drained.  I might have a few minutes to run through one quick program with Ryan, but he is resistant, and I don't have the energy to force the issue. 

Ryan is still using signs at home, which is good. "More" is still going well. We are still working on "milk." The problem with "milk" is he has become prompt-dependent, and I'm not sure how to break it.  I hold out the bottle to show him, and he immediately hold out his right hand to me, expecting me to HOH the "milk" sign.  When I hold back and wait for him to do it himself, he will either switch to "more," pat his head, or just get mad and grab at the bottle.  We're at a bit of an impasse on this one.

Soon we'll be back to working with our other agencies. I've received messages from Children First saying we'll be in contact in early May, so Ryan's OT (Occupational Therapy), PT (Physiotherapy), and Speech Therapy can be started up again.   On Thursday, Ryan will be going for his eligibility assessment for the IBI program through Thames Valley Children's Centre.  It's going to get very busy working with all these agencies again, plus staying in contact with Summit Centre, although I know they are all there to help Ryan.

Mixed Feelings

I have been reading a new book called Carly's Voice. It is a painfully honest record of a family's journey to help their non-verbal, autistic daughter find her "voice." I am only about a third of the way through, and Carly's autism appears much more severe than Ryan's,  but there is so much I can totally relate to in what they have experienced and in the emotions her father expresses.

The one thing that sticks out to me is how much that family has been able to do for their daughter (not without sacrifice and debt, but still . . .).  The mom's full-time job is advocating for and doing therapy with her daughter.  In an ideal world, that's what I've imagined myself doing for Ryan. The best scenario would be me at home with Ryan, focusing on his appointments and therapists and therapies and planning for the best possible transition to kindergarten in September 2014.  Carly's family has a dedicated ABA team and speech and physiotherapists for her, as well as the equivalent of her own, private Educational Assistant who sticks with her, during and after school.  Like I said, it's not that they haven't had to fight to make things work the way they want and sacrifice greatly to cover the financial costs.  But even just the ability to be there for Ryan, every day, participating in intensive therapy, would be so beneficial. I know, because that's what we did for the past three months!

Then again, Carly's father also points out that Carly's life is much different from her siblings.  While they are out playing with friends and being involved in recreational activities, Carly's life is focused on ABA: therapy, therapy, therapy.  Is she having fun?  I totally related to this when I saw Ryan's reaction about returning to his old daycare.  He is so happy there. He is clearly having fun and enjoying himself way more than he did at Summit Centre.  Is it worth the price? 

For Carly, it has been. I haven't finished reading the book, but I've seen the outcome of her story on video. She is actually a highly intelligent, witty young lady who is trapped in her body, but has learned to communicate by typing on the computer.  I'd like to find a balance for Ryan, between the ABA therapy and structure he needs, and ensuring he still gets to have a joyful childhood.

I just want to clarify that it's not this one book that brought out all these thoughts and feelings in me. It's that they were already there, and I was amazed how powerfully this book reflected things I've been agonizing over for more than a year now.

Signing versus PECS

I've been reading some articles lately that make me doubt my decision that sign language is the best way to go with Ryan.  Furthermore, seeing how Ryan is struggling to learn more signs than "more" is getting discouraging.  Ryan has also been starting to do more babbling lately. It's not coherent; the only clear one is "Mum-mum-mum," which I've heard rarely since he was about 10 months old.  But he has been making more sounds: meh, ga, s, h, wa, da, th, buh, etc. pop out once in a while.  Like I did with Andrea and Kevin when they were little, I acknowledge any speech-like sound and make a big deal out of it.

What I've been reading suggests non-verbal autistics have more success with PECS (Picture Exchange Communication System) when it comes to eventually learning some spoken words. I had vetoed PECS because Ryan tried to eat the pictures, just didn't seem to connect them to words/meaning, and wasn't attentive to them.  Now that Ryan's attentiveness is growing, maybe we should give PECS another try. I know the Speech Therapist at Children First was interested in pursuing PECS before we started Unity.  And I know a lot of the STEPS kids at SC use PECS, even when they start to become verbal.

However, the latest research also shows that there may be even better ways to get non-verbal children to speak, based on an integration of motor skills/the motor skills-controlling parts of the brain.  It makes sense to me, since producing speech involves many complex muscle movements.

Here's a link to one of the articles about new studies regarding non-verbal autistic children, and the search for new and better ways to augment their communication: "New Hope for Autistic Children Who Never Learn to Speak."

Kevin and Andrea

I'm feeling a little mom-guilt here because the focus all seems to be on Ryan.  Well, he is the child with the most complex needs.  But yes, I do have a lively seven-year-old daughter and a complex, high-functioning autistic 5-year-old-son.

Andrea is doing well. She seems to be controlling her stress levels in the classroom better, and has been having many "I didn't cry at school today!" days. The girls in her class are soon going to be participating in a special program focusing on friendship, self-esteem, healthy expression of emotions, etc. I think that will be perfect for her.

Kevin has been struggling a bit with school. He has his ups and downs. Lately, he just doesn't want to go to school. He says it's boring and he wants to stay home.  However, I think he's too smart for his own good.  One day, his ECE had this story when we picked him up from school: Kevin was being very disruptive during circle time.  He kept making loud noises, despite the teachers' repeated reminders for him to sit nicely.  Finally, she removed him from the group and had a talk with him about why he was acting this way. He calmly informed her, "I'm being bad so you will send me home.  If I be REALLY bad, you'll have to send me home." (!) The ECE kindly explained that they want Kevin in the classroom, and his friends and teachers would miss him if he went home.  She also reminded him of all the fun things they do at school.  After their talk, he had a better day. Oh, my Kevin!

Speaking of high-functioning autism, the SC posted a story on their Facebook page written by a student at St. Clair College's journalism program. The student has Asperger's Syndrome (which I personally think is Kevin's true diagnosis). I wanted to share the story here because it is about World Autism Awareness day, but especially because it shows how wide a range there is on the autism spectrum.  The young man who wrote this is certainly high-functioning and has a bright future ahead of him: "Windsor celebrates World Autism Day."

What's the Blog Going to Look Like Now?

What will I be blogging about now?

Well, I started this blog with the purpose of recording our journey through the Unity program, and now the program is done.

However, our story is obviously not at an end!

I plan to keep on with updates about what Ryan's doing, sharing any progress or concerns or special moments.

I'll probably be on the computer a lot less, once I go back to work full-time on Monday, and try to put some focus on improving my own health this summer.

There will likely be more entries about Kevin and Andrea, too. I've had a lot of stories about the two of them that I've wanted to share, related to Autism or otherwise, and just haven't had time to do it, with the intensity and focus of the Unity program.

So, we begin another chapter of the story.

***

 

Ryan's Post-Unity Assessment

This morning we went for Ryan's post-Unity assessment at Dr. Saunders' office.  If you remember, we did an assessment about a week into Unity (which technically should have been done before Unity started).

 

Anyway, we had the same lady assessing Ryan as last time, and she said she saw changes in him as soon as we walked down the hallway.  She noticed the big change that everyone notices: Ryan is so much more aware of the people and things in his environment. 

 

In fact, while we were in the waiting room, he kept going up to this one lady and touching her leg, and holding his arms up to be held. I guess he liked her, but I kept gently guiding him back.  I also pulled out my iPhone and put on a little music app I found and purchased, where Ryan can run his fingers across the screen, and it plays music and makes sparkles. Appropriately, it's called "Music Sparkles." (In fact, I think it's the same app we used once during Unity, on the iPad, to get Ryan to tap). He did spend a few minutes running his fingers over the xylophone and enjoying the music and sparkles.

 

Ryan showed some differences in behaviour during the assessment, too. Last time we were there, Ryan had very low tolerance for the activities presented to him and continually turned away from the lady assessing him. He also climbed out of the chair and cried so much that we moved to another, more soothing room for the second portion of the assessment.  This time, he got mad and fussed a few times, and cried and reached for me once or twice, but he stayed in his chair for the whole hour.  I brought some items from his home reinforcement basket, and those seemed to help him cope a bit better, too.  He also became interested in some blocks we used during the assessment, and the lady let him continue to play with those to keep him content.

 

For the most part, the assessment just showed me a lot of things I'd already seen on the ABLLS we did last week for Summit Centre: improved awareness, social interactions, fine motor, and gross motor skills.  Some things I felt a little frustrated about, though, because I've seen him do them at SC, but he didn't generalize the skills to the assessment today (e.g., removing a towel from a covered up object). 

 

Still, the lady assessing us emphasized how happy she was to see how much more engaged in his surroundings Ryan has become in the past 3 months.  She remembered how Ryan was very much "in his own world" back then.  She expressed a hope that we would be able to continue intensive therapy, through the Summit Centre STEPS program or through IBI with Thames Valley, because this has obviously been very beneficial to Ryan. Well, she's "preaching to the choir" on that account! I shared with her that our hopes were very much the same.

 

I'm not sure when I will receive the official "before and after Unity" report, but I am curious to see what the professionals' conclusions will be.  And, I'm sure I'll be on here sharing the results when I get them!

Final Day of Unity: Graduation Party!

I found this picture being used as the cover photo on the Summit Centre's Facebook page. Now I know how they used the puzzle pieces we decorated a few weeks ago on Easter Fun Day!  Ryan's puzzle piece is the second one in the bottom row, with the sun on it.  (You can click for a bigger view of the picture.)

***

Our final day started out in typical fashion, with Ryan climbing into the wagon and "asking" for a ride (although it's more like demanding a ride!).  Papa was stopping and having him try to put the balls in the basket again.  Ryan did it, but he definitely wanted to be done with it and have "more" wagon rides!

Papa is encouraging Ryan to push the balls into the basket.
[Watch Ryan put the balls in the basket and sign for "more" in the video below!]

 

Ryan was not happy when we tried to take him out of the wagon, so I suggested we get out the Thomas ride-on toy to distract him. At first he turned his head away from it and whined, but then he walked over and held out his hand for me to help him climb on. As usual, once on the train, he perked up and took off.  Although the video below was meant to show how well Ryan is doing with this ride-on toy, I think the most amusing part was me running backwards in front of him, trying to film it as he rocketed down the hallway!  You can even hear L. laughing at me, in background, as we pass her office. LOL

When it was finally time to really start our final day, Ryan was really unhappy. He didn't want to stay in the Yellow Room, and he was even more upset when I had to leave to do our final research session. He actually walked over to me and cried as I went out the door! I think maybe he sensed this day wasn't following the usual routine, and it upset him a bit.  Anyway, I left him with to play with D. and Papa, so he was in good hands. 

The therapists took my book of data sheets and photocopied it for the students to study and analyse. I believe they do this for all Unity participants, as part of the Unity program research. However, Ryan's data looks a lot different than others, because the level he's at didn't lend itself to the complicated graphs and percentages that other Unity participants have to complete for their data. I hope the data from Ryan's programs adds something unique to the Unity research that might help others.

When I returned from research (I do an interview and questionnaires based on my experiences during Unity, an also about parent coping/stress), they had a final craft for us.  We got to make a sensory bottle!  I knew H. had said that we'd make one sometime, but I supposed we had been ill when they made it. Luckily, they did it today, instead.  First, we got to decorate the outside of a plastic bottle with stickers.  As usual, Ryan gravitated to the bright and sparkly ones, and helped us press them on.  Then, we had to choose a variety of interesting objects to put in Ryan's bottle for sensory/visual interest.  Ryan lost his focus on the activity for a bit, so Papa and I decided to put in the sparkly things he likes: glitter, pretty gems, and tiny, shiny flowers. Then, Papa poured the water in the bottle, and I had Ryan choose a container of food colouring to colour the water. He chose green.  It was perfect: Summit Centre's colour, and it matched the tape we put on it to keep it safely sealed.  Ryan was being a bit fussy still, but Papa caught his interest by shaking up and rolling around the finished product for a while, so Ryan could see all the sparkly things whirling around inside.

After our craft, it was time to go into the Rainbow Room for a graduation party! I knew they had something planned with caps and gowns, but I wasn't expecting a whole party. It was really nice.  The SC staff set up a snack and drink table, and had two little green gowns for our boys to put on.  They also brought out the graduation caps the boys made the other day.  All of our Unity therapists, the program secretary, the executive director (H.), and the clinical director (Dr. G.), as well as some students and volunteers, were there to celebrate with us and say goodbye.

Ryan tolerated the gowning well, despite the fact that it was way too big for him, and wrapped around him like a toga!  The graduation cap, however, was a different matter, but we still had fun with it.

Papa helping Ryan put on his graduation gown

Ryan in cap and gown (He is smiling!)

My Silly Monkey!

As you may have noticed, Ryan's in the wagon for all of his pictures in cap and gown.  We decided it was the best way to go because he was happy in the wagon.  It made him much more cooperative for the gown, cap, and pictures. Besides, we know the wagon has played an important role in Ryan's time here!

It just wouldn't be Ryan if he didn't try to chew on his graduation cap. LOL

Mommy and Papa posing with Ryan and our graduation certificates
We did it!
(Although I look like I'm in pain, I just wasn't ready for the camera. LOL)

Ryan relaxed after our photo session with a Timbit and a bottle of milk. The staff were surprised to see Ryan eating a Timbit!  The funny thing was that each time Ryan took a bite, he made a face like it was terrible; then, he would reach out toward Papa's hand and pull it back for another bite, silly boy.

I was also surprised and touched that the Summit Centre gave us a graduation gift of a gift card for Teach N Toys. That will be a great opportunity to get some special learning materials for Ryan.  It was a very thoughtful gift.

We had one last thing to do after our party, though.  In Unity, they videotape the first circle time we do with the kids, and then one in the final week, to compare how the kids have changed and what they've learned.  I was worried Ryan's final circle would not reflect his improvement over the last three months if he was having a rough day. Well, I had no need to be worried today!  Ryan's circle time was the most fun one I have ever seen him have.  He was giggling, silly, and happy through the whole thing!  Another funny thing that happened was I started to say something to Ryan, and addressed him as "Ja--."  I caught myself, but everyone had heard it, and we all started laughing.  I guess after spending three months together, I'm entitled to get the boys' names mixed up!

When circle time was done, there were a few moments of sitting there and letting it all sink in.  We were free to go, or stay, as we pleased.  As we prepared to leave, Ryan suddenly stood up and went over to L., the senior therapist, and held his arms up to her.  He wanted a final cuddle. He wanted to say good-bye!  We all had kind of a "moment" because Ryan totally initiated that interaction of his own will, and sat in L.'s lap for a while and had some cuddles.  She gave him a little pep-talk about keeping up the good work, not being too hard on mom, and how much she's loved seeing his personality develop over the last three months. Even L. hadn't expected to find so much inside this little guy when she first met him. 

Finally, we had to leave.  As we left the Meeting Room, Ryan suddenly took off down the hall, running and screeching happily and waving his arms in the air! It was like he realized the program was done, and was having a moment of celebration. We were all laughing and calling, "Run free, Ryan!" as if he were escaping the program.  But really, we didn't want it to end.

When we got back to the Rainbow Room, B. (graduate student) was there to say a final good-bye to Ryan. She's worked with us a lot.  Ryan needed a little prompt, but he did wave bye-bye to her.  Then, as he walked away from her, toward the coat hangers, he held up his left arm and started independently waving. It was the best and most spontaneous wave I have ever seen him do. It was almost like he understood we're not coming back anytime soon, and was waving bye-bye to Summit Centre!

Mommy and Ryan's Unity hand print craft

***

 

"Believe in me . . . I can do amazing things."
 

Yes, I do believe in you, Ryan. Yes, you have shown me you can do amazing things. Slowly, and with intense work, we can bring Ryan more and more into our world. I do not know what the future holds for our little man, but I am hopeful. 

Unity Day 56: Home Visit #4

Today, D. came to our house for the final home visit. We haven't had a chance to work with him in a while, so it was nice to see him again.  Ryan certainly seemed excited to see him; he was smiling and giggly and silly when D. arrived. I think Grandma was a bit offended because her arrival, a few minutes before, wasn't greeted with as much enthusiasm (although Ryan was happy to see her, of course!).

Today we went through a bunch of the usual programs and how they might look at home, as well as discussing some possibilities for future programs.

We started out with some "pat head," and I did the modeling and gave verbal instructions while Grandma prompted from behind Ryan.  Ryan was a little irritated because he had to move from his favourite rocking chair to work on the floor, and he kept standing up and trying to go back to the rocking chair.  D. said we could use this to our advantage, since the rocking chair is obviously strong reinforcement for Ryan.  So, Ryan got a mini-reinforcement between each trial (something to chew on, or beads, or cuddles), and then got to go to the rocking chair when he successfully finished a program.  For "pat head," Ryan was a super-star today! He got 5/5 trials correct, and the last three were barely prompted. Then, he got to rest in his rocking chair for a few minutes.

Next, we got him down again and did "clapping."  He got 5/5 on this one, too, but he needed a little more prompting and some of his responses were a bit weak.  Grandma was prompting him from the elbows.  Also, D. suggested that I model longer, so Ryan doesn't forget what I'm asking for; basically, I keep clapping until Grandma's prompt comes, and then I can stop. That's something we can fade back later, as Ryan's clapping imitation becomes stronger.

Then, I set up "bowling" for him. Today, I really noticed how much harder it is to knock down the pins on our bowling set than the one at SC.  Ryan hit the pins consistently over several attempts, but was only able to knock one down twice. Later in the visit, when D. saw the ball I was using during circle time (small but harder, rubber), he suggested I use that ball for bowling instead. It's heavier, so it will knock the pins down more easily. Still, Ryan had one great roll that knocked down two pins!  D. said we should end when he does something awesome, so he'll remember that happiness/accomplishment the next time we try the program. So, Ryan got to go to his rocking chair for a nice, long break after that.

After that, we tried "colouring," but in a slightly different fashion since we're at home. I pulled out Kevin's magnetic drawing board that all the kids like, and we used the pen on that like we would do the marker at SC. The only thing missing was a special grip (I still haven't received one). Ryan did great!  He had a good grasp and made nice, long marks on 4/5 trials.  Grandma tested him a bit, though, by adding in the component of getting Ryan to slide the bottom button in order to erase his work. Ryan was a bit frustrated by this, but D. suggested showing him his reinforcement to encourage him to work for it by pushing/pulling the eraser slide button.  Ryan did it, with help, and under some protest. ;)

We also tried the stacking toy I have here, to see how it compared to the one we did at SC yesterday.  Ryan got the ring on in 6/8 trials, but only one was at wrist prompt, and the rest Grandma had to HOH.  I was also telling D. about how Ryan hadn't tried to mouth any of them yesterday, so of course, Ryan tried to mouth every single one today. Stinker!

We did our musical shape sorter, on its side again. Ryan can independently put in the circle, but for square he needed the wrist prompt, and triangle finally needed an HOH (he was fumbling it too much). D. also suggested leaving out the star (it's the hardest shape) and doing the circle again, instead, so Ryan could end on a positive. Again, that's something we can change as Ryan gets more independent with the other shapes.

I also set up "push train" on the floor. At home, we have the grooved wooden tracks. The biggest nuisance is blocking Ryan from dismantling and chewing on the track, since that's the kind he got addicted to chewing on at SC for reinforcement.  He actually did better than I expected in terms of the tracks. Grandma and I were quick to block/move them after Ryan pushed the train, and offer him other, chewable reinforcement.  Ryan got 3/5 trials correct on the wooden track. The two incorrect ones were early derailings, and really, the track was a bit uneven and more challenging than usual.

Then, we chatted awhile about some other home toys/programs:

• Puzzles: The puzzles we have at home have more pieces and smaller pegs to grab onto than the ones Ryan is currently working with. Until he'd ready for them, D. suggested we make some modifications to the puzzle and program.  First, find a way to make the peg grips larger (Grandma took the puzzle home to Papa, and is giving him this as a project). Then, only have Ryan practice removing and replacing one piece at first. As he masters each one, we can move on to expecting him to put in more pieces.
• Car Ramp/Garage: Keep practicing with Ryan putting the car down the ramp (skill maintenance). The next step is teaching him to use the elevator on the toy. We tried this out a bit, and D. suggested starting with me modeling pushing the elevator up halfway, and Ryan pushing it the rest of the way (HOH at first). We will do the same thing for pushing the elevator back down.  Eventually, I will fade back my physical prompts so Ryan's pushing it up and down himself.
• Stairs: I mentioned how we had set up a plan with T, regarding the stairs, but I still had to get a different coloured and textured mat to put down as a visual for Ryan to STOP at the top of the stairs. When Grandma heard this, she got a great idea!  She has just renovated her kitchen.  She used to have a little green-striped mat in front of her sink, and Ryan liked to sit on it and play with the edges. She kept it, and said we could have it and use it for Ryan's STOP visual.  It's perfect because it is a totally different colour/texture from our carpet, it's just the right size, and it addresses the one question I had for D.: How do I get Ryan to sit down without a physical prompt?  Well, Ryan already liked sitting on Grandma's mat, so hopefully he'll generalize that to our house.  [Coincidentally, Gram had dropped off the rug a bit later and I had to go downstairs. When I opened the gate, Ryan walked over and I said, "STOP." He immediately stood still, then plopped down on the little rug. He then scootched to the edge of the stairs,and with my permission, carefully scootched down all the steps on his bum! It's working!] D. also suggested that we practiced the "stop and sit" with the gate up sometimes, just get him used to doing it without us right nearby. The idea is that he will learn to "stop-sit-scootch" even when we're not around, so we can leave the gate off, and he'll be safe.
• Potty Training: I felt the need to bring it up before we left SC. Personally, I don't feel Ryan is developmentally ready to begin potty training soon, and I was reassured when D. totally agreed with me.  Still, we are at the stage of future planning, so I asked what would be the way to start when the time comes.  D. said to start slowly, and just get Ryan used to sitting on the potty.  [Although I'm saying potty, Ryan's way too big for a training potty, so it will be on the toilet with some kind of special seat.] Get him to sit on the potty for seconds at a time, and give him huge reinforcement.  Slowly extend the amount of time he sits on the potty to get his reinforcement.  Eventually, he can sit on the potty for awhile with a toy/reinforcer.  From there, the body functions will come. (I also know they have some good tricks at SC to encourage actually "going," and that's something I could ask about at a consultation group when the time comes.) 

Since I didn't really have anymore questions, I decided to run a circle time to see what would happen and get any suggestions D. might have, based on his observations. Ryan, however, was getting really angry and tired. He did not want to do circle time. I thought the singing might cheer him up, but he was fighting it (mood swings: grinning one second, crying the next).  I tried to shorten the circle time by removing some activities, and doing some portions of the activities myself.  But Ryan was miserable!  What he did, he did grudgingly.  He was crying and throwing himself down a lot. It was quite the test for Grandma, who was assisting Ryan while I ran cricle. We needed to pause to wipe Ryan's nose several times from all the crying, and it was a struggle to get him to sit nicely. 

So, this led to one final question for D., after all: What do I do when Ryan gets like this during programming/circle-time activities at home?  Do I press him on? Do I stop?  D. said if Ryan's frustrated or upset, keep the reinforcement level high. He may even need to have a toy/chewy thing in his hands the entire time.  As long as this keeps him calm and attentive, it's okay. In terms of circle specifically, there are things I can control, like I tried to do today. For circle, I can decrease the amount/duration of activities, or what expectations are placed on Ryan. Grandma wondered if this might teach Ryan that if he throws a tantrum, he will get less work.  It's a good question, and one that I had way back in our first few weeks of Unity. D. said to make sure to vary which activities get changed/shortened each time this happens.  Ryan is less likely to pick up on the difference in expectations  if there is no regularity or pattern to it. 

By this time, Ryan was flopping back on Grandma with his eyes half-closed, enjoying his "milk." D. said he was okay with ending there since we'd pushed Ryan's buttons enough. Also, as this is our fourth home visit, my home issues have been addressed for now. 

Tomorrow is the last day of Unity! I am getting weepy thinking about it! This time with Ryan has been an experience I'll never forget.  Okay, I'll save the rest of my boo-hooing for tomorrow. ;)

Unity Day 55: Keep Moving Ahead, Despite Some "Attitude"

Before starting today's entry, I spent a few minutes trying to find the correct term to describe Ryan's demeanor today.  I think the closest I could discover was "headstrong." When T. came in to work with us, and saw the way Ryan was throwing around the peg shapes and rocking back hard against Grandma, she said, "You're energetic today!"  I had to chuckle at T.'s positive spin on Ryan's behaviour.  Tit-for-tat, though. Ryan was testing us today, but we tested him a lot, too!

We tried the stacking beads again this morning, following the same program as yesterday (having him put the last one on, and then allowing him to pull them off). However, Ryan was in a more frustrated and defiant mood, so we moved his prompt level back to HOH. At that level, he was more cooperative and got 5/5 trials correct.  T. also noted that Ryan went two trials without trying to put any of the pieces to his mouth.

He was really engaged in the big bead maze today, so that was his main reinforcement. 

Since it's similar in skill to the stacking beads, T. said she wanted to see Ryan try the stacking rings again. We haven't done those in ages!  Of course, in his obstinate mood, Ryan was kind of flinging them at first, but with some HOH and wrist prompts, he started putting the rings on the stacker.  It helped when Grandma held the base of the stacker, so Ryan couldn't knock it over!  Like yesterday, I was once again reminded that it's important to go back and practice old programs to make sure skills are maintained.  An interesting thing T. pointed out was that Ryan didn't try to put a single ring in his mouth! When we used to do this activity, we had trouble with him constantly mouthing the rings. It's one of those improvements that I would have taken for granted. 

Ryan did better with "clapping" today. He got 5/5 correct with me modeling, and Grandma elbow prompting from behind.  However, when we switched to "pat head," Ryan got really frustrated.  He only got 2/5 correct, and needed both a block of the left arm and a prompt of the right elbow to do those 2 correctly. 

At this point, we noticed that not only was Ryan frustrated, but he was also having some body control trouble.  He was getting worked up and flapping his hands a lot, which interferes with any program we try to do. T. came up with an idea. She went to the Snoezelen room and borrowed some lights which she thought might be relaxing for Ryan.  The first one she plugged in fascinated him. It was a tall, bubbly tube, with colour-changing lights and bobbing fish. We were amazed at the sudden change in Ryan's demeanor; he stopped moving, leaned back against Grandma, and just zoned out, watching the lamp.  T. said jeez, if only we'd known about this 2 months ago! 

But it gets better.  When we decided it was time to try another activity, I unplugged the lamp. Suddenly, Ryan sat straight up, signed spontaneously for "more," and started babbling animatedly, "Mum, mum, mum, mum, mmmm, mo, mo, mmm!"  We were all stunned!  Of course, there was huge praise and excitement, and I plugged that lamp right back in for him!  We tried it once again (unplugging), and he signed for more again.  After letting him enjoy the lamp for a while longer, his attention eventually wandered back to the big bead maze.  We tried a few more "pat head"s now that Ryan was more relaxed, and he was more successful.  I am SO tempted to run out and buy one of those lamps!

Of course, Ryan was still being a bit "headstrong" and having some body control issues.  Grandma tried to do "coins in the piggy bank" with Ryan, but he was fumbling them a lot. He only got 2/7 in at a wrist prompt level.  However, T. said it was okay to increase the prompt on a day like this; Grandma could hand him the coin and do it HOH for several trials, and then fade back the prompt later.  This did seem to work, as the 2 +'s came within the last 3 trials.

We also tried some more picture matching today, since I had planned on trying it again yesterday.  However, I knew that today probably wasn't the best day to make any conclusions about the program, based on Ryan's performance, due to Ryan's moodiness and obstinacy. Not surprisingly, he got 2/5 trials correct, and seemed totally unfocused on the task at hand.

We took a short break, letting Ryan sit back and play with the bead maze, to calm him before circle time. Circle was interesting today because it was just us! J. and his family were away, so we decided to see what Ryan could do on his own.  He actually cooperated fairly well.  I give him credit for doing all the circle activities by himself, without a peer to share the workload.  It was kind of nice because we could move at a slower pace for Ryan, so he had more of a chance to do (prompted) song actions, choice-making, and matching to the book.

Today, Ryan really started testing Grandma at snack time. He kept standing up from his seat and going over to her, trying to get her to pick him up.  But Grandma stuck to the program, knowing we want Ryan to sit nicely at the table.  She didn't give in. (Bonus points for Grandma!) T. said that if he stands up and tries for cuddles while drinking his bottle, the best thing to do is block him from drinking and give him clear instructions to sit down. When he sits nicely, he gets his bottle back.  Ryan stood up and went to Grandma several times, but Grandma kept pulling his bottle away and telling him to sit nicely on his bum (in the chair), and then he could have his milk. It's been a few weeks since I've had trouble keeping him sitting at the table, so I think he was just testing Grandma to see what he could get away with!

After snack, we had another "graduation" craft to do for Unity. Ryan and I went into the main office and we each put a hand print on a little square of fabric together. I have seen some of these in the Meeting Room; they are tied together almost like a quilt, and have the first names of the parent-child team written by the hand prints.  When we went into the office, the secretary held out a selection of paint tubes to Ryan for him to pick a colour. He picked red for us. Then, she squirted some paint on a plate, and we took turns smooshing our hands in it, and then on the cloth, to make the hand prints.

After doing our hand prints, we went back to the Rainbow Room.  Ryan got on the Thomas ride-on and zipped up and down the long hallway a few times. He was being a bit silly today, though; several times he started to zoom backwards down the hallway!  We were laughing, but at the same time, we had to make sure he didn't run anyone over!

When he was finished his ride, we talked about some new things we might try in the Rainbow Room (gross motor skills).  T. wanted to see how Ryan was doing with bowling (the program we are doing at home), and see how he reacted to a different type of bowling set.  The one they have at SC is the common, light-weight plastic bowling set. We lined up the pins about 2 feet away from Ryan, and he did well at that distance.  I think these pins knock over a lot more easily than the ones at home, but he still had to give the ball a good roll to knock them down.  This time, he was even knocking down two pins at a time!  T. was saying that when he masters it from this distance, we might start moving him from sitting up to a step, a chair, then standing.

We also tried to show him the bean-bag toss for the first time. We started with Ryan sitting on a chair about a foot and a half away from the board: close enough for him to reach it but not knock it down or kick it.  Then, we modeled how to throw the bean bag into one of the holes. However, we were definitely not expecting Ryan to get the bean bags in the hole his first time trying this activity! Jeez, sometimes it's hard for us adults to have an accurate throw.  No, our focus was on getting Ryan to understand the concept of the game. We were looking for him to hold the bean bag, and then reach toward the board and release it. We were reinforcing any attempt when he reached out and dropped the bean bag against the board.  By the end of our trials, he was doing this fairly consistently.

I could sense him getting droopy, so I brought out a ball and just had him roll it back and forth a bit between us.  I was trying to stage my rolls so the aim was a little bit off, and he'd have to try and "catch" it.  Most times, he did get it, but when I rolled it to his side, he would roll it off in some other direction, and not back to me.  Oh, well.  I had Grandma HOH the last catch/roll with him, so we could end on a prompt-perfect positive. [Ooh, nice alliteration. My brain is slowly gearing up to English-teacher mode again!]

***

I originally got this shirt for Ryan to wear on World Autism Awareness Day (April 2) in conjunction with the "Light It Up Blue" campaign of Autism Speaks.  However, we were home sick that day. :(   So, instead, I saved it for our last week of Unity, and he wore it today :)  Anyway, my point is, Ryan IS a blessing!  Yes, he has autism; yes, he can be mysterious and difficult at times; and YES, he is the sweetest, cuddliest, cutest, most lovable little guy I know. :)

Unity Day 54: Still Learning (All of Us!)

From Facebook:

"Don't know why I'm so exhausted. We had a very productive day at S.C., tried a few new things, and Ryan was generally in a good mood. Maybe it's because the little stinker was up till 1 AM last night?"

The day started off with Papa encouraging/helping Ryan hang up his coat. It's not something I've ever made him do before, but it is a useful skill. (Why didn't I think of that?)  Papa also added a new component to wagon-ride time.  He put 4 balls in the wagon with Ryan.  After they had gone down the hallway and back (doing the usual manding for "more"), Papa flipped over a container and helped Ryan "throw" the balls into the "basket."  I was impressed that each time they came back to put the balls in the container, Papa adjusted it a bit to decrease the prompts. By the end of the wagon rides, they had gone from HOH putting the balls in the basket to Papa resting the ball on the edge of the wagon, and Ryan independently pushing it into the basket.   Papa appears to be a natural at finding/setting up incidental learning opportunities!

We started off with Itsy Bitsy Spider this morning, and Ryan was actually smiling as we did the actions! I pretended to make the spider "dance" on the top of his head at the end, and he liked that. :)

Next, T. decided to re-address the issue of the peg boards. She first found one that had several chunky shapes to put in their respective holes.  Ryan was somewhat interested, but he was distracted by the number and variety of shapes, and seemed to be more engaged in removing the pegs than putting them in.  Then, T. thought of a different idea, that kind of focuses on the same skills.  We decided to call this activity "stacking beads" (for lack of a better name).  For this one, wooden dowels can be placed in a board so they stand straight up, and then you slide chunky beads down onto the dowel.  Again, we noticed he loved taking the beads off the dowels more than putting them on, and T. suggested we could use this as his reinforcement. So, we did something similar to a backward chaining technique: We put several beads on the dowel, and then Ryan put on the last one.  If he did this properly (with physical prompts--HOH and wrist to start--because it's so new), then he got to pull all the beads off the dowel.  Once he starts putting them on independently, we can reduce the amount of beads on the dowel before starting, and increase the number of beads he must put on successfully before being allowed to pull them off.  By the end of our trials, Ryan got 3/5 of the square beads on at a wrist prompt level.  That's really promising!

However, he did try to keep mouthing the pieces, so Papa was doing lots of blocking.  We also had to keep reminding ourselves to tell what we WANT him to do, not what we don't want! T. was chuckling a bit because I was getting frustrated with myself. I kept catching myself and scolding myself for telling him "not in your mouth!" and things like that.  She was pleased that I was at least catching myself. :) Papa was doing much better by the end of the session, too.

Then we did a little "clapping" and "pat head."  Ryan showed improvement today.  I gave him 4/5 on the clapping, but he did regress a bit to needing a forearm prompt from Papa to get a "clap" today. His claps were a bit weak, too, just kind of tapping his hands together once or twice. On the first attempt, where he got a -, Ryan was "scrolling" through answers to find the right one. T. said to avoid letting him scroll through his repertoire.  We can jump in and prompt him more quickly, or block/correct him if we see he's going for the wrong imitation. If we need to fully prompt the first few trials, we can fade back the prompts as we go through the trial. For the "pat head" imitation, Ryan did really well. He got 5/5! We were working at an elbow-prompt level, and in fact, I gave him three (+) because he patted his head with only Papa blocking his left arm.  [I must add here, that on today's feedback sheet, T. wrote, "Great job prompting from behind today!" That praise all goes to Papa. :)]

We had a few extra minutes before moving to the Blue Room, so we tried an old imitation: "pat floor." For some reason, Ryan was getting frustrated and really scrolling through his imitations to find the right answer.  This is where Papa had to jump in and keep Ryan's hands near the floor, and give him the wrist prompt (and even a few HOH pats) like T. had mentioned earlier.  Ryan was losing interest in participating, so we "prompted perfect" (HOH so he got it just right) and ended the trial. It was a good reminder for me that we need to go back and practice old programs occasionally, to ensure the skills are maintained ("maintenance").

Next, we moved into the Blue Room.  I had Papa do the "coins in the piggy bank" with Ryan, which we hadn't done in a while. Ryan remembered he needed to put them in the slot, and tried to put the coins ON the slot, but he was fumbling to get them in.  He was able to do 3 coins at the old wrist prompt level, but also needed HOH for 3 coins.  Maybe we should have started with the HOH and faded to the wrist, since we hadn't done it in a while. Looking back, I realize that would have made more sense.

Then, we pulled out the shape sorter, another program we haven't done in a few days.  He was a bit stronger on this one (but then he had been at a higher level with this one), with 4/6 trials correct.  He got two in independently, and two at the wrist prompt level.  The other two he was fumbling a bit too much, and needed some HOH assistance from Papa. As usual, though, Ryan was quite persistent in trying to wiggle them in on his own.  He also enjoyed ripping off the lid and getting into the shapes!

[Sorry, I may get the order of events mixed up from here. I can't exactly remember if "Play Doh" and "colouring" were before or after circle time and snack. (?) Tired brain!]

"Colouring" went great today. Ryan got 5/5. For 4/5 trials, he had a solid grip and made nice, continuous marks on the paper; only one was a little weaker.  What I found amusing was that when I offered Ryan his reinforcement, he wasn't even interested. He wanted to keep colouring! So really, he did a lot more than just the 5 trials.  I think Ryan is fascinated by the cause and effect of moving the marker and seeing the colour/shape that results.

"Play Doh" was the usual today.  No really independent squishing, but Ryan was rolling the balls around and patting them when prompted. Papa did note, however, that consistent use of terms is important with Ryan.  Papa was saying "push it" (meaning to push down on it), and Ryan kept rolling it away like he does with a ball.  Papa caught this confusion, and I reminded him that I usually say to "smoosh" it. T. agreed that we need to be careful to choose terms that don't sound too much alike, so we can prevent confusion for Ryan.

Circle time went well today.  Ryan was a bit floppy and silly, but he did particularly well with matching to the book at circle time.  T. referred to this as, "Great discriminating to match."

I thought Ryan was going to fall asleep at snack. With Papa cuddling him as he drank his bottle (a bit of a no-no at SC, where Ryan's trying to learn to sit properly at the table, but I don't have the heart to say no!), Ryan's eyes were considerably droopy.

However, in typical Ryan fashion, he got a second wind after snack and pushed through.  I set up "push train" on the train table, and Papa guided Ryan through. Ryan got 3/5 trials correct, but the last one was the best.  Ryan pushed it from one end to the other, down all 5 tracks. Not only that, but it started to derail at one point, and Ryan actually repositioned the train and pushed it the rest of the way down the track!  We have never seen him fix the situation and continue like that. It was pretty awesome!

After that, I looked for our pop-up toy, but couldn't find the one we usually use. It mysteriously disappeared. (?)  So, I got out the bobble-head one we used for a bit before to see what Ryan would make of it.  Well, he remembered the cheats, that's for sure!  He instantly started popping up the lids with his fingers and flicking the bobble heads.  Papa was trying to get him to use the switches and pulls and so on, but Ryan was having none of that.  T. said, "Okay, let's at least give him some resistance on opening them so we're increasing his hand strength." So, Papa was pushing down on them as Ryan tried to flip them up, so Ryan had to work a little harder to get what he wanted.

I suggested we move to the Rainbow Room because I wanted to work on Ryan's tracking the soccer ball again.  Since the focus is on the "tracking" aspect of it now, he got 3/5 trials correct. I was giving him verbal reminders to "follow the ball" and "keep kicking the ball," and he responded pretty well to that.  Most times, he was following the ball and kicking it, two or three times in a row.  We did have a little trouble keeping him on track a few times, where he would start to wander in a different direction from the ball.  T. said to shadow him from behind (stick close behind him) in case he gets off course, so we can quickly guide him back on track. Papa and I also made a little oopsy in the consistency of our reinforcement.  Sometimes Ryan got it after one kick, or two kicks, or three. In the "acquisition" (learning it) phase of a skill, it's really important to have consistent reinforcement. So, I decided he'd have to track the soccer ball for 2 kicks to get reinforcement.

Finally, we ended with the Thomas ride-on toy, and holy smokes, once Papa got Ryan on that toy, Ryan took off!  He went up and down the long, central hallway at least twice, with only an occasional pause to catch his breath.  T. was amazed; she hadn't seen him on it since his first few tries.  One funny thing happened: L. was in the hallway with us on the way back, and seeing how Ryan was cruising along, she gave him a push with her foot from behind and said, "Whee!" Poor Ryan was caught totally off guard; he startled, arms and legs flew out, and he came to an abrupt stop. He didn't cry or anything. He just looked shocked! L. was immediately apologetic, but we were all laughing and joking about how Ryan would be terrified of this toy and never ride it again.  However, Ryan's a resilient little guy; after taking a moment to recollect himself, he soberly continued his journey back to the Rainbow Room, like nothing had happened. ;)

Unity Day 53: Start Blah, End Positive :)

The day started out as a pretty typical Monday. Ryan started to cry as soon as we got into the building. He did not want to work. He went straight to the wagon, of course. We were early, so he did get his wagon ride from Papa, and that calmed him down a bit.  He was also acting very tired, but he had a good sleep last night, so I'm not sure what was bothering him.

Anyway, we had tried the peg board and pegs L. lent us over the weekend, and they didn't work out. I chatted with her about the issue. It was a new, foam peg board, and we really had to push down hard to get the pegs in. We all know Ryan has issues with that pushing-down motion, so that peg board was useless.  The one we had used in-centre was plastic, and the pegs fit easily into the holes. Oh, well. We tried.  Besides, I'm not sure Ryan would've been independent with that activity within a week.

After morning song, I went to have my final weekly meeting with H.  I got my evaluation for last week, and we discussed how homework had gone over the past week.  The evaluation was mostly positive; I just needed few reminders:

• Try to find some new opportunities to work on manding. At SC, I tend to do most of our manding work during snack or while Ryan's in the wagon. Those are the most natural opportunities; I have to learn to create some new ones.
• Try to prompt from behind Ryan; it's easier to fade out that way.
• Step back and give more opportunities for my support people to take over.

I had a bit of an exception to the last point; Grandma and Papa have been taking turns, so that does lessen the amount of time each person has been able to observe before working hands-on with Ryan.  Moreover, with all our sick days recently, we haven't been in the centre much for us to show them the interactions.

My homework was done, so I just explained what we'd been working on (push-down giraffe, bowling, and "milk" sign).  I had some good news about the "milk" sign. Yesterday afternoon, Ryan was fussing and I asked him, "What's wrong?" Then, I noticed he was squeezing his hand in the sign for "milk"!  I asked, "Do you want some milk?" and he made a little noise that I took as an affirmative. When I brought him the bottle, he held out his hand and squeezed it closed once.  That was great! I gave him lots of praise, and kept repeating the sign and saying, "Yes, you wanted milk!"  He hasn't really done it again today, but he does hold his hand out and curl it a bit, like he's waiting for me to give him the HOH assistance to do the sign.  I'm hopeful this will continue progressing.

We talked a bit about follow-up. I said I'd prefer the monthly Unity consultation group (for parent-graduates of Unity), and maybe a few home or daycare visits.  Then she told me I still had about 270 Parent Points left!  I couldn't think of an immediate use for them; the only material I don't have at home that I could use right now is a marker grip for Ryan's colouring.  So, she made a note about the grip and said I could keep my remaining points for anything I might think of at the   monthly consultation groups.

Back to Ryan and Papa . . .

When I returned from the meeting, we went into the Blue Room and started off with "matching." Maybe that wasn't the best one to start with. Ryan had no interest in it whatsoever. He was fumbling the pictures, mouthing them, dropping them randomly, and not even looking at them. L. thought maybe there might be a problem with using pictures, or the program needed to be tweaked. However, I pointed out we haven't done it for a week, and we've only used the picture matching 3 times before.  Furthermore, my data for those 3 trials showed Ryan had about 70% accuracy.  So, we're going to try it again tomorrow, to see if Ryan was just having a case of the Mondays.

Then I had Papa do the pop-up toy with Ryan.  Ryan did really well with this one; he pushed down 3/4 independently and one with a wrist prompt.  Popping them up, he needed two HOH, one at a wrist prompt, and one he did independently.  The exciting thing is that the one he did independently is the hardest one, and he finally figured it out! You have to twist the flower to get the head to pop up. Ryan kept going back to this one and doing it independently! I think he enjoyed all our excitement and praise each time he showed us this new accomplishment. :)

Next, I had Papa do the animal puzzle with Ryan today.  Ryan was much better at taking the pieces out today (only verbal reminders needed).  He also did pretty well putting them back in.  He was trying really hard to manoeuvre hem in, but he needed HOH help on three of them, and wrist prompting on two pieces.  However, he finished off by putting the parrot piece in independently!

When I went to set up some activities at the table, Papa was playing with Ryan on the floor. I heard L. getting excited and went to see what was going on.  Well, Papa found a new manding opportunity, albeit a silly one! Ryan's shirt was riding up a bit; Papa tickled his tummy, then put his shirt back down. Ryan liked it, so he was hiking his shirt back up, so Papa would give him more tickles!  They went back and forth like this several times. L. was so pleased with the natural manding opportunity Papa discovered (and how Papa was responding properly) that she gave him 5 points for us!

Up at the table, we started with "colouring." I reminded Papa how to hold the marker, and what grasp-effort we were looking for from Ryan (what gets reinforced). Ryan did really well! He got 3/5 trials correct.  The 2 incorrect trials were just a little weaker, with less of an intentional grasp, and more of a push.  However, out of the three Ryan got correct, two were fantastic!  Those times, he gripped the marker and drew it up and down, round and round, for at least 5 seconds.

Next we did Play Doh.  Ryan still needed the HOH for that downward pressure, but we saw a few promising actions.  For his very first smoosh, he grabbed the Play Doh ball and squished his fingers into it a bit.  Other times, he put his hand over the ball as soon as Papa had squished his (modeled for him).  One time, he even put his hand over Papa's as Papa modeled, like Ryan was helping Papa push the Play Doh down! Still, we tried to get more of Ryan pushing down the Play Doh. We had Papa hold Ryan's hand at the wrist, above the Play Doh, to trigger his "pat table" response.  L. thought that might encourage the proper motion. He did pat the Play Doh, but not with much force. We did have a laugh, though, when Papa kept urging Ryan to try, and suddenly Ryan turned to ME and tried to crawl into my lap. LOL! Talk about a role reversal! Usually I'm the "mean one," and Ryan is trying to escape to someone else! 

Next it was circle time, and Ryan was more engaged today.  I let Papa take charge of assisting Ryan. I was pleased to see Ryan do some song actions today (clap hands, pat head, sticky-bubblegum hands) with minimal prompts.  I think he even did a few of the sticky-bubblegum (bringing hands together) moves independently! He was also interested in matching pictures to the book. I had to remind him to wait for his turn a couple of times. :) He also liked picking toy food items for "going on a picnic."

After snack, L. had a special craft for us to complete: making the boys' graduation hats! What? I didn't even know Unity had a little graduation celebration, but I guess they do for us, on Friday.  The craft was gluing a black paper bowl to a black paper plate. When done properly, the bowl is the hat and the plate is the top!  They even had a little tassel for us to glue on, and strings to attach so we can tie them on.  Then, the boys got to personalize their caps with stickers, letters, sparkles, etc.  L. said they will even have little green gowns (SC colours) to wear.  Of course, she also added, many of the kids refuse to wear the cap or gown for more than a few seconds, but we'll give it a try.  I think it's the cutest idea ever. I hope they let us bring our cameras (I know they will be taking photos, but I want some!).

After that, we moved into the Rainbow Room.  Ryan showed L. his improved "soccer" skills. The last time she saw it, he was still kicking from a chair!  Now, he's kicking the ball from standing, multiple times in a row, and tracking the ball. L. was so pleased by this progress! She suggested that our focus (and reinforcement) should be based on tracking, now that Ryan's so comfortable kicking the ball around.  Remember, "tracking" is watching and following an object as it moves around.  So, the idea is Ryan kicks the ball, watches where it goes, then goes after it himself to kick it again. He does this sometimes, but it's not yet consistent.

Next, L. wanted to try Ryan on some stairs, just to check his gait (the way a person walks or moves).  They have an interesting rocking toy that flips over and forms a little set of stairs.  Well, Ryan did not like it at all. Even with me or Papa holding his hands, he did not want to walk up the steps.  He was obviously very anxious.  I mentioned this anxiety is probably from feeling a lack of security because any stairs Ryan uses have a rail or at least a wall on one side, and this set of steps is open (no side supports). L. agreed with me.  Then I mentioned how T. had suggested the safety program for going down stairs (stop-sit-scootch on bum) and L. approved.  The only thing L. added (and T. had said this too) is we might need some kind of visual for Ryan as he approaches the stairs, to get him to stop. We tossed around a few ideas like a bright strip of safety tape, or something with a different texture and colour, like a little area rug from the dollar store. (?)

We still had some time, so I suggested Ryan try the Thomas ride-on toy again.  We haven't used it in over a week. Well, did he surprise us! Papa helped him get on, and he rode forward all the way across the room. I said, "I think it's just the wall that's stopping him," and L. said, "Well, then send him down the hallway!  Let him go free!"  We did, and Ryan LOVED it.  The train went more quickly on the smooth floor (Rainbow Room is carpeted), and he chugged all the way to the end of the hallway. Then, Papa turned him, and he chugged three-quarters of the way back!  By then he was tired, but that was amazing!  L. was saying she wishes she had him for a few more weeks because he's so close to moving on to a ride-on with pedals.

Finally, we relaxed on the Rainbow Room carpet to watch a nice game of roll-the-ball between Ryan and Papa. Coincidentally, Ryan was sitting on the bottom step of the little stairs, and he was sitting cross-legged. L. pointed out this worked as an opportunity to have Ryan get/catch the ball with more intention. Instead of rolling right up to him between his legs, it now hit his legs and kind of bounced off or rolled to the side.  Ryan quickly figured out that he had to put a hand on the ball to stop it/control it.  He also caught on that if it rolled slightly away or to the side, we weren't going to get it for him. We waited to see if he would get off his bum and get it!  Mostly, he just had to reach out for it, and he did.  We were also pleased to see him tracking where the ball went.

On this peaceful and positive note, we ended our day. :)

[Here, I smugly add, that we received an extroardinary amount of praise from L. today on two of the items that had scored a little lower on last week's evaluation. 1.) Papa found an unexpected, fun, new manding opportunity. 2.) L. commented several times today about how well Papa was doing working with Ryan (he even earned a few more points besides the 5 for the manding!), and how well I was doing guiding and explaining the activities and reinforcement.  She was very pleased with the excellent communication between us. See?  I knew we could do it.  We just needed a little more time to show it!)

Ryan's Jellyfish Craft from Friday

(He did the colouring, helped pick and put on the stickers, and I HOH'ed the glitter with him.)

Unity Day 52: Points for Just Being There!

From Facebook:

"Left SC early today to go to clinic. Painful sinus infection and chills--feels like someone punched the right side of my face. At least my craft went over well at SC. Now behind 2 days on blog--sorry, but I gotta rest. :("

[Technically, this blog entry (and Thursday's) is being written on Saturday. Thus the "behind 2 days" mentioned above.]

I went into S..C. today with Ryan because I felt I had to.  We've missed so much time over the past two weeks, between his illnesses and mine. Plus, I had signed up for my turn to create a craft activity for the boys today.  However, I was so foggy-headed. Thank goodness Papa was there to drive, and also give extra support with Ryan.  It seemed like it took me forever to decide what programs to do, set them up, and record data properly. My brain was just not working.  I think it was because it was constantly leaking out of my nose! (a sad joke) At one point, when I apologized for my ineptness today, L. said, "You get points for just being here today!  You coming in today is good enough, Mom!"

Anyway, when I first got there H. came to talk to me. She said, "Have you signed up for a date to do craft?" I looked at her like she was crazy and said, "I'm doing it today. I picked the date, and you wrote it down during our weekly meeting on Monday. I have my craft stuff here."  She said, "Oh, I thought L.A. was doing it today. Have you talked to her?" I said, "No . . ." and H. walked off to go check her notes.  I thought I was going to shriek.  The main reason I came today was because I promised to be in charge of craft! When L.A. arrived, I heard H. asking her about craft, and thankfully, L.A. was clueless!  H. must have written the wrong name in her notes, so yes, we did get to do the activity I had prepared. Whew.

Before the other family arrived, we had been trying something T. mentioned at the home session yesterday.  One of the skills on the ABLLS is putting pegs in a peg board. I'd never tried it with Ryan, but she thought he might be able to do it, since he can put shapes in a shape sorter and do simple puzzles (separate pieces, not jigsaw).  So, L. (lead therapist today) got out a peg board and we showed Ryan how to do it.  The positive thing was that Ryan was very engaged in the activity.  He did keep trying to put the pegs in the hole for several minutes, but he didn't have any success doing it independently. For this week, L. lent us a peg board and pegs to work on at home, to see if Ryan can figure it out by the end of the week.

It's been a while since we've worked with L., and she was laughing because Ryan was so laid-back today . . . literally. He was so relaxed, just laying around on Papa, Mommy, the floor, and L.  He wasn't overtired; he was simply chillin' today.  He was also zoned-out.  Besides trying the peg board today, his mind seemed everywhere else but here and now!  He wasn't in a bad mood; he was just totally lazy and unresponsive.  (Later in the morning, L. would remark, "I'm not sure whether I like Ryan better when he's laid-back or when he's defiant. I almost think it's better when he's defiant. At least he's showing he cares!") L. even got him into her lap and started giving him tickles (she knows all Ryan's best tickle spots!) and he barely reacted!  After a few minutes, she finally got some good giggles out of him, and he jumped up and was ready to follow us into the Blue Room.

The first thing we did was my craft for the boys: making and decorating jellyfish!



This is the sample I made at home yesterday. Ryan's is still drying at SC.
 

The adults thought the craft was really cute. The boys were both in a blase mood, so they showed some interest, but needed encouragement to finish the task.  Ryan picked out some ribbons, and helped smooth the tape inside to attach them to the bowl.  Ryan really liked the ribbons; he kept playing in them, and got really mad when Papa took them away! When he settled down, I HOH'ed putting on some glitter glue decorations with Ryan, and let him pick some stickers, which Papa helped him pull off and smooth on to his jellyfish.  J. did well with his, too. I saw him doing a good job decorating with the glitter glue and putting on some stickers, while his mom finished off the ribbons.


L. noticed how much Ryan liked the ribbons, and suggested I throw a couple in his reinforcement basket. What a good idea! She also mentioned that this craft might be a good idea for the STEPS kids.  It's funny; I had already decided I was going to offer the rest of the craft materials to SC (When am I ever going to use them? I am NOT a craft person!).  So, I asked L. if she'd like to keep the rest of the materials for the SC, and she gladly accepted. I also left my sample jellyfish for them. :)

It took me forever to clean up and get organized after craft (again, I was just feeling so brutal).  Thank goodness Papa was there to interact with Ryan.  We eventually did some "pat head" and "clapping." As I said before, Ryan's focus was everywhere but here today, so I could barely even get his attention when I was modeling and giving the instructions.  Naturally, his responses reflected his lack of attentiveness, and he got 1/5 on "pat head," even with Papa behind, blocking his left arm.  On the last trial, Papa also gave him a prompt at the right elbow, and he finally patted his head.  For "clapping, " Ryan seemed to come back to us a bit. He got 3/5 trials correct, but all three times, Papa was touching both elbows to encourage him. We'd usually expect him to do it with less prompts, but like I've said, Ryan's focus wasn't with us today.

Next we did the animal puzzle at a wrist prompt level.  I did the first trial (3 pieces) with Ryan, and I had Papa do the second trial. Today, Ryan needed reinforcement to take the pieces OUT--something he usually does no problem (I don't even record data for it anymore). Hmm.  But then he put the first piece IN independently for me, the second one at a wrist prompt, and the third one was HOH (-).  Talk about decreasing engagement in the task!  With Papa, Ryan did all pieces OUT independently, and 2 IN at wrist prompt, one HOH (-).  Overall, that shows some improvement on his second trial, with Papa. L. was happy to see Papa working well with Ryan (and vice versa!).

The last thing we did was the pop-up toy.  I had Papa do this program with Ryan.  Ryan was working for his beads (and Papa cuddles) as reinforcement. Pushing them down, Ryan did two at wrist prompt and two independently, which is really good.  Popping them back up, he had more of a struggle. He did one at a wrist prompt, and needed HOH for the rest.  I had to remind Papa that Ryan gets less/no reinforcement when he needs to be corrected, but plenty of reinforcement when Ryan does it independently or with minimal prompting.

Next it was circle time.  Both Ryan and J. seemed to be having a hard time focusing for most of the circle.  Then Dr. G. came in to join us, and I think J. was inspired by her presence. I, however, was Ryan's "puppeteer" once again. He was so floppy, and I was HOH'ing all the song actions for him. Again, he wasn't in a bad mood, he was just totally out of it.  It was funny and sad at the same time.

I had to laugh because at the end of circle, Dr. G. said, "It's so nice to finally meet your husband!"  I said, "Oh, this is my father-in-law!" and L. said, "Yes, this is Papa!" Maybe Dr. G. was just being polite, but he is a young-looking grandpa. :)

Papa helped Ryan through snack while I went to do research. But after research, I went to Dr. G. and explained how poorly I was feeling, and that I couldn't stay for Theory.  She was very kind about it, and definitely more concerned about me getting myself better.

So, Papa drove me straight to the clinic, where I was diagnosed with a sinus infection and put on horse-pill-sized antibiotics, and told to take Tylenol every 4 hours for the pain. Please let me be better by Monday!

Next week is OUR FINAL WEEK OF UNITY. It's unbelievable. It's gone by too quickly. I don't want it to end!  I'm so afraid Ryan will lose all he's gained once the intensive daily therapy ends. Yes, I know how to do the programs myself, and they've given me written guidance for future plans, but it's the TIME that scares me.  I know when I'm working, I have so little time to do the intensive therapy, and I feel awful about it.  However, a hint dropped by a staff member gave me some hope. We were talking about speech sounds again (it wasn't T. this time) and the person said, "When he's here for STEPS, we'll  . . . oh, wait . . . well, yeah, I'm sure he'll get in! . . ."  Oh, if Ryan gets into STEPS, that would be fantastic.  I am definitely not getting my hopes up; besides, now that I've learned more about the STEPS schedule, I'm not even sure we could make it work.  But like Unity, it's one of those things that if we get the offer, I'll find a way to MAKE it work. The SC daycare program, which is exclusively for autistic preschoolers, and focuses on ABA? I couldn't ask for better. But again, I will not get my hopes up.  There's also a re-assessment for Thames Valley's IBI program coming up next month, which is another potential opportunity for us. [Although I really think STEPS is my preference. ;)]

Unity Day 51: Home Visit #3

From Facebook:

Wednesday (would have been Unity Day 50): "So sick . . . guess I overdid it the past few days. Plus Ryan was up partying (and then crying) all night. So, no Unity for us today. Sigh. :("

Today: "Spent the whole home visit wiping my drippy nose and racing to get more tissues. Then the therapist offered to leave early because I looked so wiped out. How embarrassing. :p"

Even though I'm still pretty sick, I figured we could handle a home visit today.  Grandma joined us, and T. was our visiting therapist again.

We started out by discussing some of the toys we'd tried for the first time last week, the giraffe popper and the bowling game.  Ryan hasn't tried to push down on the giraffe's head independently since that day; I always have to HOH or position his hand on it, then really pull down on his arm (I'm doing all the work.)  With bowling, he's had some good days when he's interested, and some days where he was totally unmotivated.  Here are T.'s suggestions:

• Giraffe Push-Down: Put Ryan's hand on the giraffe's head, and my finger on the giraffe's ear. Push down that way, so Ryan has less sensation of me pushing on his hand (less physical prompt).  Try to fade back my hand on the giraffe.
• Bowling: My judgement call as to what is acceptable. So far, I have been expecting him to knock down one of two pins.  T. said we might accept a hit (but not knock over) of a pin, and just give a little less reinforcement. We also noticed that Ryan has a good roll/throw sometimes, but misses the pins.  T. suggested putting up more pins in a straight row, about a foot away from his feet, so he has a larger target to hit.  We tried this, and he did have more success.

Next, T. actually brought up some future work we might do with Ryan regarding safety going down the stairs. This is something I've had on my mind for awhile (getting rid of the safety gate!), and it was also something Ryan was working on with his physiotherapist from Children First just before we started at Summit Centre.

• The idea is to to Ryan to STOP at the top of the stairs, sit down, and scootch down them on his bum--for now. (Grandma's already been trying to teach him this at her house.)
• We need decide on a visual to use for Ryan to teach him STOP at the top of any stairs. Then, we need to work on the command to "sit down" again.  He can scootch down on his bum, but sometimes he needs a physical prompt to remind him how. He also tries to stand up sometimes on his way down, but he's not physically ready for that yet. 
• T. tried to see what Ryan would do if we left the gate open (with her on the stairs for safety, of course). He eventually went over and did attempt to take a step down. She stopped him by holding up her hand and saying, "Stop."  It took a while for us to get him to "sit down" (finally had to do it physically).  He started to go down on his bum when she encouraged him, but needed some physical prompting to keep moving. He also tried to stand up in the middle of the stairs a few times, and she had to remind him to "sit down" and come down "on your bum!"

Then, I mentioned how we had got Ryan a rocking horse toy for his birthday, thinking he'd love it (he loves rocking, right?), but he's terrified of it!  Whenever I try to put him on, he gets nervous and upset.  I think he'd like it if he got over his fear and realized it's fun! 

• T. mentioned his fear is likely due to feeling a lack of security. It has no back support, and it does tilt back and forth, so maybe he needs more body support with it.  She suggested that we put the horse sideways against the couch, and that someone has their chest to his back when he's riding, to give him more of a feeling of security.
• She also said to use a very strong positive reinforcer when he's sitting on the horse. For example, we got out his container of dried noodles and let him run his fingers through it as we praised him for how nicely he was sitting on the horsey.
• Also, we want to keep the experience positive. Therefore, as soon as he shows signs of getting anxious, we let him get off the horse.
• We tried these steps 2 or 3 times while T. was here, and Ryan was a little more relaxed each time we put him on the horse. He was on it up to 15 seconds the last time, with no signs of anxiety. She said eventually we can fade back the physical support and the reinforcement, and start rocking it.

After that, we talked about the ABLLS. It was good to get a chance to go through all the skills I had questions about scoring, or if I wasn't sure I'd scored them properly.  In the end, there were a few changes, but mostly for the positive.  The only one I took away (put back to "0") was under writing, "Can he make marks on a paper?" The idea is a short line, holding a marker. I had said "yes," but really, he still needs the help of someone holding the top of the marker, so he can't do it independently. Like T. said, though, he's SO close to this, that she bets he'll be doing it in a few weeks.  There were a couple of other skills that I had already scored "0" that he should have within a few weeks. On the positive side, there were a few skills I hadn't scored because I wasn't sure, and they ended up being given a 1, which means they are skills Ryan has gained.  These were in the social skills, and fine motor skills areas, mainly. So, the pictures I posted the other day of the ABLLS have changed a little, but the overall, "Look at all the gains (orange colour) he has made!" remains the same. :)

Next, we talked about something from last week's home visit, using the new "milk" sign.  It hasn't gone very smoothly so far. It's hard for me to sign the sign, hold up the bottle, and help Ryan (HOH) form the sign, by myself. 

• T. suggested this would work better when 2 people are around.  Hmm. That doesn't happen much lately! But anyway, the idea is one person holds the bottle of milk and models the sign for milk, while the other person stands behind him and folds his hand in the "milk" sign.
• We might accept even him just closing his hand once at first, and slowly shape it up to the full, proper sign.
• We may have to block his other hand, so he's not tempted to confuse it with other signs he's learned, like "more."
• To give him more opportunities to ask for "milk," put small amounts of milk in the bottle at a time, so he'll be motivated to ask for more "milk." Have more milk nearby to avoid frustration (and maybe add to his motivation?).
• Remember, it took him a few weeks to master "more." It will take time for him to get "milk," too. We've just started.

Finally, I asked T. about beginning speech sounds.  Yes, we are focusing on signing right now, but Ryan does make a few little speech approximations: ahhhh, ba, buh, ya, ga, muh, mum, heee, aaayeeee, and mmm are the most common ones.  Grandma mentioned in the car the other day, "If you can make that sound, you can say Grandma!"  From talking to the therapists at S.C., I know it's more complicated than that, but I do wonder if I should be encouraging Ryan's speech sounds more. So, I asked T. what I can/should be doing. Basically, it's what I've been doing already:

• Always pair signs with words.
• Encourage/respond to any speech-like sounds Ryan makes. Give lots of praise ("I like your talking!"). Imitate back to him. 
• Set aside specific play times to focus on speech (don't do it during other programs).  Use sounds I know he has to build on to make words, like "buh" or "bah" for "ball" or "balloon."

So, that was about it for our visit today. As I mentioned in the Facebook blurb, T. could tell I was a mess today (constant tissues and drippy nose), and she was fine with ending the visit a bit early.