Cute Story: Ryan and Gabriel

Last night, Rod told me a little story about what happened when he picked up Ryan from daycare in the afternoon. It really touched my heart. First, here's some background to the story:

Ryan and Gabriel have been in daycare together since the Infant Room, when they were about 11 months old.  Even as an infant, Gabriel seemed excited whenever we showed up to drop Ryan off or bring him home. 

Then, they moved on to the Toddler Room.  In this room, Gabriel started to talk more. He would get excited and point when he saw us come in, and say "Momma" and "Ryan" (like "Ryan's Momma") when I went to pick Ryan up at the end of the day.  He also began giving Ryan hugs and kisses when we arrived, and being at the gate to wave good-bye when we left.

Next, they moved up to the Junior Preschool room together.  Every day, he still greeted Ryan with an excited exclamation of "Ryan!" and hug and a kiss.  He also became Ryan's helper. He would follow Ryan around, picking up things that he dropped, cleaning up his messes, and holding his hand to guide him to the snack table, circle time, and often to bring Ryan over to me when I arrived to pick him up from daycare.  The daycare teachers sometimes had to ask Gabriel to give Ryan more independence because he was always hovering over him so much! But I thought it was sweet how innocently Gabriel showed this protectiveness over and kindness to Ryan.

A month or so ago, Gabriel got moved up to the Senior Preschool room. Ryan stayed in the Junior Room.  Any time we've walked by the Senior Room and Gabriel sees Ryan, he drops whatever he's doing, and he cries out, "Ryan! Ryan!" and gets all excited.  I think he really misses Ryan! And it makes me kind of sad that Ryan doesn't have that special friend in his room anymore, although all the kids in his room seem very considerate of Ryan.

Now, here's what happened yesterday:  When Rod went to pick up Ryan from daycare, the kids were outside in the playground.  The Junior Preschool class was over in the smaller playground, and the Senior Preschool class was over in the bigger playground.  Rod had to walk through the bigger playground with Ryan to get back to the car.  When Gabriel saw Ryan coming through his playground, he came running over, yelling, "Ryan!" and gave him a huge hug. But here's where the magic happened: Ryan leaned in, puckered up, and gave Gabriel a great big kiss!

I could tell even Rod was awed as he repeated this story.  Ryan, on his own initiative, was showing affection to his friend!  Ryan must miss his buddy Gabriel as much as Gabriel misses him.  What a sweet,  sweet, moment.

After telling the story, Daddy bent down to Ryan (who was nearby) and asked him for a kiss.  Ryan leaned in and gave him a little peck! 

Anybody who believes autistic people cannot feel and show love need to meet my son. <3

No Surprises on the Official Report

I just got home from a few days away and found the official report from Thames Valley Children's Centre in the mail. I sat down, read it a few times, highlighted some things, and made some notes.  But overall, there's no surprises.  It's basically what I was told on the phone before, but in fancier wording.

Although I must say, the angry-vindictive-mother/English teacher in me thoroughly appreciated all the typos in this most professional of reports. My favourite one was this:

"He is preoccupied with biting on and putting objects in his mother."

[I assume they meant mouth.]

 

The salient points of the report are as follows:

 

Assessment Results

• Dr. Saunders indicated that administration of the Mullen Scales of Early Learning at both pre and post Unity assessments indicated significant delays in Ryan's cognitive (intellectual) functioning, with overall functioning below the 1-year level.
• Ryan's understanding of simple phrases is around the 9-month level.
• Ryan's understanding of single words is around the 11 to 12-month level.
• Ryan's use of gestures to communicate is similar to that of an 8 to 9-month-old child.
• His skills are evenly developed with no areas of significant strength or weakness, indicating significant delays in his development across all areas.
• Ryan's communication skills (both expressive and receptive) are at about an 8 to 9-month level.
• Ryan's personal care/daily living skills are comparable to the early 1-year level.
• Ryan's socialization skills are at the 7 to 10-month level.
• Ryan's motor skills (both gross and fine) are in the 1 to 1 1/2-year range.
• Therefore, "[H]is developmental abilities make it difficult to distinguish ASD-related behaviours from his level of developmental delay as they are not distinct in most areas from his level of ability adaptively."

 

Summary and Recommendations

• Ryan "has not been recommended for eligibility for IBI, but would benefit from ABA services to support skill building within his developmental ability and understanding."
• Ryan's skills will be expected to develop at a much slower rate than his same-age peers.
• These learning deficits will be expected to place significant limitation on those skills which Ryan might be able to acquire.
• Skill-building across time with focus on daily living and functional skills is appropriate.
• He will require adult directed support to participate in home, school, and community living activities, and to facilitate his development.

• The focus of any future ABA programming should be focused on difficulties within the area of daily living skills, appropriate to his developmental level.  They may also focus on safety awareness, irregular sleep patterns, and self- stimulatory behaviours (like flapping hands).
• The development of a formal communication system like PECS would be an appropriate goal, but must take into account his overall development and whether or not pictures are meaningful to him.
[They add:  "It is noted that picture symbols are not typically understood in children who display Ryan's developmental skills, and use of sign may also require evaluation in relation to Ryan's current understanding."  Okay, then what the heck are we supposed to do?!]
• Ryan would benefit from regular routines which he can attach and adjust to, as it is difficult for him to follow new or novel instructions.
• "Increasing his receptive object identification for toys or desired things in his environment would help to teach Ryan a functional way to increase his access for preferred activities or toys." [WHAT? Just how do we do that?]
• His intellectual abilities should be formally re-assessed to make informed decisions around educational planning and the development of an IEP [Individualized Education Plan] once Ryan enters school. 

This I found particularly interesting. Their view of Ryan's "autism" diagnosis hasn't really changed over the past year:

 

"Ryan's autism ratings indicate mild to moderate level behaviours . . . however . . . Ryan's behaviours related to ASD cannot be reliably distinguished from those that are reflective of and appropriate for Ryan's developmental level . . . ."

[In other words, they claim they still can't tell whether he's autistic or just developmentally delayed. Really? Come on, people!]

 



However, they did attach a lovely pamphlet about the appeal process, which I have to act on within 20 business days. Guess what the first step of the appeal process is? An internal review! Now that's funny.  They already deferred, then denied, my son for the same reason both times.

 

I want to hear what Summit Centre has to say, first.

 

***

 

In fact, I did receive a call back from Summit Centre on Thursday afternoon, but I was unable to return the call in time as we were leaving town.  However, the message said that Ryan is still on their waiting list for STEPS. In fact, he is third from the top. There is a good chance he will get into their program. She did mention the appeal process for TVCC [Ha!] and mentioned the news was unfortunate.  I am going to try and call Dr. G., at Summit Centre, back on Monday in hopes of discussing the situation further.

 

There are other things going on in my life right now that make all this a bit of a time crunch, but I'm adopting my husband's can-do attitude and recent motto for it all: "We'll make it work."



A Kick in the Gut . . .

I know it's been awhile but I've been waiting, hoping, for some positive progress or news to share on here about Ryan.

Instead, I got a phone call today that has devastated me.

The psychometrist [a psychometrist is responsible for administration and scoring psychological and neuropsychological tests under the supervision of a clinical psychologist or clinical neuropsychologist] from Thames Valley Children's Centre called with the results of his I.B.I. program eligibility assessment which was completed early last month.

Ryan is NOT eligible for their Intensive Behavioural Intervention program.

I do not have the official report in my hands yet, so I'm trying to remember everything she told me on the phone, and it's a bit overwhelming.  I'm just recording certain ideas that she kept repeating and certain phrases that jumped out at me. As she kept saying, when I get the report in my hands sometime next week, I need to sit down and "have a good read."

Here are the highlights (if you really want to call them that):

• Ryan has been denied entry to the program because they feel he is "too developmentally delayed to participate and benefit" from the program.
• The gap between Ryan's developmental skills and those expected for his age has increased since he was assessed last year. This does not mean he has regressed, but that he is getting further and further behind age-appropriate abilities.
• From their analysis of Ryan's response to the ABA program through Thames Valley, the pre-and post-assessment of Ryan's Unity experience, and his IBI eligibility assessments last year and now, Ryan has not shown significant improvement in his skills. Therefore, these programs have done little to benefit Ryan. 
• They believe the above is due to significant cognitive delays.

Now, although I have yet to receive these reports, the psychometrist and her lead clinical psychologist had verbal discussions with Dr. Saunders about Ryan's pre-and-post-Unity assessments, to gauge his process. This is what she told me:

• Ryan's pre-Unity assessment put him at a developmental level of about a 5-month-old, up to about the level of a 12-month-old.
• Ryan's post-Unity assessment put him, on average, as still below the level of a 12-month-old.
• Although Ryan sat still and was much more attentive and cooperative during his post-assessment, there was no appreciable change in his cognitive development. 

She informed me that chances are Ryan will continue to have significant learning difficulties and cognitive delays, and they are not sure how much progress he will make in the future.  Although his motor skills have improved, his cognitive skills show he will continue to learn "much more slowly" than others.  She is not even sure the other ABA programs are doing much for him, but we can continue trying different therapies from different agencies.

Her report, when it arrives, will provide information for community resources we can access as Ryan gets older (Windsor Regional Children's Centre at age 6+; Essex County Community Living, etc.)

She mentioned they (Windsor Regional Children's Centre) will probably re-assess his cognitive development after he starts school, to determine an appropriate learning program for him.
[Um, wouldn't it make more sense to re-assess before he starts school, to be ready for when he starts JK in 2014, at age 4 and a half?]

At the current time, she encourages continuing involvement with Children First to work on goals related to daily living, keeping in mind what's appropriate for his developmental level. In other words, feeding and some form of basic communication of needs continue to be appropriate goals.  Higher-level goals like toilet training and safety awareness are not appropriate at this time.

Basically, her overall assessment is the same as it was one year ago:  she can't say what is developmental delays, and what is autism, because he's too developmentally delayed to participate in the activities necessary to achieve a definitive result.

Okay . . . yes, there's been regression since we left Summit Centre. This, for me, simply underscores his need for continuous intensive intervention. He WAS making progress there. Now, it's disappearing. And these people seem to be saying he's at such a low-functioning level that he can't even DO therapy.

As soon as I got off the phone with Thames Valley, I e-mailed Summit Centre asking about Ryan's status on  their waiting list for the STEPS program. It's now our only option for continual, intensive therapy for Ryan.  How ironic is it that Summit Centre staff said they thought for sure Ryan would be eligible for Thames Valley's program?  Now, will they say no to him, too?  I pray they do not.

You know I'll be on here with more details when I get those reports in my hands, and when I hear back from Summit Centre. Right now, I am going through the stages of grief . . . denial and anger so far! As a mom, how can I simply accept that my child has limited capacity to learn? He's only three years old, and he has autism! Who knows what will happen in the coming years?

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.