Pre-STEPS Visit to Summit Centre

This morning I took Ryan into the Summit Centre to drop off some paperwork, give him a chance to become reacquainted with the Summit Centre, and let him experience some of the STEPS program with me by his side.

Remember, STEPS stands for "Specialized Teaching, Education, Partnership & Support." According to Summit Centre's website: "STEPS is our early intensive behavioural intervention program. Children initially receive five full days of one-on-one Applied Behaviour Analysis (ABA) treatment each week, year round. Individualized written programs are developed and carried out for each child at both the child’s home and The Summit Centre. In-home treatment promotes generalization of new skills to the home, and facilitates family involvement.  Programming is aimed at improving language and communication, social skills and play, cooperative behaviour, and independent living skills. The Summit Centre works with preschools, schools and other agencies to promote smooth transitions."

When we first showed up, Ryan was smiling and giggling on the walk up the driveway.  And when we entered the building, he was greeting everyone with a smile.  It was a positive start to the visit.  When we got into the front office, he wanted to wander around and go exploring. But I headed him down to the Blue Room where we would meet with Tara, who will be Ryan's senior therapist this year.

In the Blue Room, Ryan got into his usual antics, like trying to take things off people's work tables, and running out the adjoining door into the kitchen (he always used to do that!).  I directed him to the reinforcement cupboard, but he was more interested in running around the room and getting into other people's stuff!

When Tara joined us, we sat at the snack table and Ryan played with the old bobble-headed pop-up toy he used to like there.  He became quite excited by the bobble-heads and kept flinging their heads the whole time Tara and I chatted. 

Tara pointed out some of the people who will comprise Ryan's therapy "team."  I am so bad with names, but I recognized most of them from when we were there for Unity. I believe each child has a team of 6 therapists who take turns working with them on different days.  There is also one "lead" therapist among this group. 

Tara had a few more questions about Ryan's daily routine (like lunch and naps) which we hadn't experienced at Unity. It was nice that she still remembered a lot about him, though.  She also gave me a list of items that Ryan will need to bring with him for STEPS.

Then Ryan and I went to visit Helena, the executive director.  I had some paperwork to drop off and a few questions for her.  Ryan liked the chairs in Helena's office.  He kept climbing up on them and petting the upholstery!  Helena assured me that many of their kids like the chairs in her office.

We then headed back down the hallway to join the STEPS kids for snack time.  On the way, we paused to find Tara in the senior therapists' office, and had a little reunion visit with the other senior therapist, Laurie. When Laurie welcomed him, he immediately left my side and ran over to her, and put his arms up to be picked up!  She of course couldn't resist, and picked him right up, giving him lots of cuddles and tickles.  Ryan was all giggles and snuggles.  He must have remembered that Laurie always had great cuddles and tickles for him.  Laurie was pleased. She said that the only reason she's glad that she's NOT his senior therapist this time is because she can spoil him now, and it won't interfere with teaching! LOL

As we left the room, Jackie, the secretary, came down the hallway and Ryan went right over to her, grabbing at her legs and pulling in for a hug.  Jackie crouched down to get on his level, and he snuggled right in and kept putting his head on her shoulder.  I was laughing and saying, "He's trying to be cute and win everyone over!" and Jackie said, "Oh, he did that a long time ago!" :)

Then we went into the Blue Room to join the others for snack. However, I forgot to pack Ryan's food! D'oh! At least I brought a bottle.  So, they made a spot for us to join the other kids and their therapists.  Ryan was still giddy from all the attention he'd gotten from Laurie and Jackie, so he was silly and wiggly and giggly. He even had the hiccups!  Still, it was a good chance for many of the therapists who will be on his team to see him at snack time and learn a bit about him in person. He got several compliments on how cute he is and his gorgeous blue eyes, and my little flirt reveled in the attention.  However, he did need frequent reminders to stay in his chair and keep his hands off the other kids' snack items.

After snack, we joined the big group of STEPS kids for circle time.  Ryan was a little mad because I took his bottle away, and he wasn't done yet, but I wanted him to know when the therapists give the 2-minute warning and say, "Clean up," that snack time is over.  He settled a bit when Tara and I brought him over to the reinforcement cupboard to pick out a few items to keep him happy during circle time.  Ryan chose two old favourites:  a string of shiny beads and a spinning, light-up wand.

Circle time was a bit more challenging. It started out okay.  Ryan wanted the beads and the wand, but I wanted to use them as reinforcement, so I kind of had to put them aside until he needed them.  He was interested for the first few songs and activities.  I liked that the person leading circle (who, coincidentally, will be Ryan's team leader) included Ryan in some of the activities.  He got to "say" his name, pull a frog off a log, and move one of the activities on the task board to the "done" side.  However, Ryan was restless less than 10 minutes into circle. He started to fuss and try to squirm away.  He wasn't paying attention to the activities or songs unless I redirected him.  I tried to give him the beads and the wand to encourage "sitting nicely," but he pushed the wand away after awhile and started whipping the beads around so hard that I had to hold them down.  Then he got mad, of course.  But Tara said it was good to see what he can tolerate for now, so we can plan accordingly next week. 

So, on Tuesday, things will start slowly, but we have decided it would be best to put him in for a full day.  They are going to start him right in the Red Room with the others for his ABA work, but if it gets too overwhelming for him, they do have a single treatment room across the hall they can go to for awhile.  For circle time, he will probably only come in for the last 5 minutes or so, at first.  We've also decided to work in a nap time in the afternoon, around 1 PM, just see if/how long he'll sleep there.  And the senior therapists remember what kinds of things used to settle Ryan when he got upset. I also had to create an updated list of possible "reinforcements" for Ryan and the best ways to soothe him.

I look at the other children in the STEPS program and think, "Wow, Ryan has so far to go . . ." But then I keep in mind that some of these children have probably been here for almost a year or more (I remember seeing most of them when Ryan was in Unity), and we are just beginning.  Everyone seems very excited to work with Ryan.  I think they see, like I do, that he has so much potential! We just have to figure out the best way Ryan learns, the best way to teach him.

Overall, the visit was very positive.  Everyone was so welcoming of us, and seemed genuinely happy to have us back.  It was fun to see the reactions of people to how much Ryan has grown over the past 4 months (inches!), and to see Ryan reacting positively to them.  In fact, even though he flared up a bit during circle, Ryan went right to Tara and gave her hugs, too, when she bent down to wave bye-bye to him.  No, he's not a fan of the structured activities and the ABA, but I think he understands these people are here to help him.

Another positive was that Summit Centre executive staff had asked for a copy of Ryan's eligibility assessment--and consequent denial--report for Thames Valley Children's Centre's IBI program because they wanted to see for themselves the justification for his denial.  They have suggested that although it might not be possible for ME to request a review of the decision and another assessment, THEY may have the clout and connections to do so.  This is very interesting.  One of my goals for Ryan this year is to prove to Thames Valley that Ryan CAN benefit from intensive ABA treatment and make great progress in his skills.

Somewhat on a tangent here, but one more thing was interesting to me about our visit:  I was reunited with one of my former students there! She is a middle-aged lady from India who was in my English classes at St. Michael's. I didn't get a chance to ask her specifically, but I believe she was there either as a volunteer or on a student placement because she was helping with one of the boys at snack, and observed circle time, taking notes.  I remember her as a very kind-hearted lady and hard-working student.  Wouldn't that be neat if she is looking to work with children with special needs? I'd call that a St. Michael's success story. :)

Ryan's First Dentist Appointment and Kevin's Dental Update

Actually, this was Ryan's first "official" dentist appointment.  About a year or so ago, I had to take him in to get checked out because he bumped and slightly loosened a tooth.  (That turned out fine. It healed as if nothing happened). It was a good opportunity, then, for Ryan and our dentist to meet each other and learn a bit about each other. At that time, I had explained about Ryan's autism and developmental challenges. I was surprised to find out that one of our dentist's sons is on the autism spectrum, too! This makes our dentist, who's always been wonderful with the kids, especially sensitive to the needs of Kevin and Ryan.

Anyways, back to today. We had decided today would be Ryan's first official visit to Dr. Tony (his informal name) for a cleaning and check-up.  I was very nervous about this for several reasons:

• Ryan hates doctors.
• Ryan will not let me brush his teeth or look in his mouth.
• Ryan does not like to be reclined back.
• Ryan currently has a yucky cold which makes him more sensitive than usual.

Papa came along for extra support. I think that was a great idea because he was very calming and cheerful for Ryan.

Once we got Ryan into the examining chair, he started to get nervous.  The hygienist asked what the best procedure might be, showing him instruments and explaining things, or just getting right into it?  Seeing Ryan was nervous, and not paying much attention to her anyway, we said just to go for it. So, she showed him how the chair moved up and down, and leaned him back.  Right away, he started to shake and cry a bit, and grabbed a hold of Papa's hands with a vice-like grip!  I knew he wouldn't like that part!  He maintained his grip on Papa's hands while the hygienist gently put on the bib, got Ryan to lay back, and tried to take a look in his mouth.  She showed him the special toothbrush, but he cried out once or twice and clamped his mouth shut. She didn't want to upset Ryan too much, so she asked if we'd like to skip the cleaning and just have Dr. Tony come in and take a look. We agreed.

This was a good plan. Dr. Tony was busy finishing with another patient, so Papa and I had a few minutes to sit with Ryan and calm him. We kept him reclined, so he'd get used to it.  Ryan was still gripping Papa's hands, but he started to relax.  I was massaging his legs, and Papa was massaging his hands, and Ryan liked that. We kept talking to him reassuringly, and he started to seem more curious than anxious.

Then Dr. Tony came in and talked to Ryan about looking in his mouth.  He was so patient and gentle!  I don't know how he did it, but he managed to get Ryan to open his mouth a bit a few times.
Yes, it helped that Ryan let out one or two brief cries, and Dr. Tony got a good peek in.  But he didn't force Ryan to do anything. He managed to get the little mirror in once or twice to peek at Ryan's back teeth, and even got his fingers in Ryan's mouth a few times.  He showed Ryan the little air hose and put a few puffs on Ryan's arms (and in his armpit!) to make him giggle.

After the examination, he picked Ryan up and gave him a cuddle, lots of praise, and then walked Ryan over to pick a prize out of the treasure chest.  Ryan was more interested in the dental items on a nearby shelf! We had a laugh over that, and gave him a toothbrush.  Then Dr. Tony picked him up on his knee to see into the treasure chest.  What did Ryan do? His put his head on Dr. Tony's shoulder and gave him a big hug! It was so sweet!

Papa took Ryan out to the waiting room while Dr. Tony and I chatted. He said Ryan's teeth are very healthy: no cavities or other issues. Yay! He had some good suggestions for slowly making Ryan more comfortable with a tooth brush and dental examinations, like giving him a toothbrush just to chew on, or wiping his mouth out with a cloth (like I did with the kids when they were babies). He also really emphasized it's important not to push Ryan, or distress him, because we don't want him to be totally against dental interventions.  (I really saw that today in how he and his staff handled Ryan's appointment. It was perfect.)  He's really happy that Ryan has such a healthy diet and prefers milk; I guess it's one blessing of his limited food preferences because he doesn't eat much sugary food.  However, he would like us to try introducing a little more water after milk or meals, just to rinse off the teeth.

We decided that Ryan's next appointment will be with the other kids (in 9 months--dental coverage, you know), so he can watch his brother and sister and see what they do.  Maybe watching them will encourage him to participate more (both Andrea and Kevin are good at the dentist's). We will try again next time to do a cleaning, but again, we won't force the issue.  If Ryan should have any tooth problems when we see Dr. Tony again, and Ryan's still not comfortable with the basic procedures, Dr. Tony will refer him to a pediatric dentist who specializes in helping anxious/special needs children. 

Overall, it was a great appointment, thanks to the gentleness and understanding of Dr. Tony and his wonderful staff!

***
On a similar note, speaking of the pediatric specialist dentist, Kevin had to get some work done this week at Dr. Young's.  After his and Andrea's check-up with Dr. Tony last week, they discovered Kevin has a tooth condition similar to one Andrea had around his age, too. Basically, some of their back molars have fissures/pits in them. It's not exactly cavities, and it's not due to poor dental hygiene.  It's something the dentist actually suspects happened as their tooth buds developed in utero. It makes these teeth more vulnerable to cavities and other future issues, so it's better to treat them proactively. So, a year or so ago, Andrea was referred to Dr. Young and got a special sealant applied to two or three of her back teeth, and one got a silver cap as well. Now, Kevin was referred to Dr. Young for the same reason, and went yesterday and got the sealant treatment on three of his back teeth. He did great! Of course, it helped that he was prescribed some relaxation medication to take before the appointment, and got nitrous oxide during the procedure.  He also got to watch Phineas and Ferb on a little screen while they did the procedure. Andrea remembers that she got to watch Spongebob when she got her teeth done.  LOL I guess those are the bonus amenities at the pediatric specialist's office.

Kevin will be going back in December for a follow-up because one of his back teeth is not quite through yet, so Dr. Young wasn't sure if that one will need treatment, too. We have to wait till it comes in.

She also noted that Kevin has several loose teeth, and she could see on x-ray the ones ready to push through soon.  I think the tooth fairy should get ready to make frequent trips to our house!

By the way, she did note the one tooth that fell out a long time ago and how the new one hasn't come through yet.  As I suspected, it's one that Kevin bumped a few years ago, and it fell out prematurely a few months ago. It's not hurting anything; he'll just continue to have a gap for a while, because that tooth's not ready to come in anytime soon. ;)

Big Changes Ahead: Taking the Road Less Traveled

The Road Not Taken

 

Two roads diverged in a yellow wood,

And sorry I could not travel both

And be one traveler, long I stood

And looked down one as far as I could

To where it bent in the undergrowth;

 

Then took the other, as just as fair,

And having perhaps the better claim,

Because it was grassy and wanted wear;

Though as for that the passing there

Had worn them really about the same,

And both that morning equally lay

In leaves no step had trodden black.

Oh, I kept the first for another day!

Yet knowing how way leads on to way,

I doubted if I should ever come back.

I shall be telling this with a sigh

Somewhere ages and ages hence:

Two roads diverged in a wood, and I—

I took the one less traveled by,

And that has made all the difference.

 

By Robert Frost (1874–1963)

 



Well, as if Roux-en-Y Gastric Bypass isn’t a big enough change in my life this summer, I have had another big decision to make, too.   

 

When Rod and I were on our way home from my surgery consult in Toronto, in mid-June, he asked me, “Do you like your job? Would you be less stressed out if you didn’t have to work?” 

 

Of course, I was totally thrown by this unexpected question, and took a few minutes to respond. 

 

 “Yes, I do like teaching and love being a teacher,” I said, “but it definitely adds some stress to my life sometimes.” 

 

“Well,” said Rod, “I don’t want you to get have that ‘flame-out’ thing or whatever happen to you.”

 

I laughed. “I think you mean ‘care-giver burnout’,” I corrected him.

 

He said, “I just wonder of you’d have a lot less stress if you didn’t have to work.  I want you to know that if you want to, you can stop working, anytime.  My income is enough to take care of everything.”

 

Again, I took several minutes to collect my thoughts after this unexpected pronouncement.

 

"Work can be stressful,” I said. “And I have thought, and said, in my blogs and stuff, how nice it would be if I could just put all my focus on the boys’ needs. Well, the family as a whole. I have felt guilty over the past few years that I just haven’t been able to do enough for everyone, but especially in terms of Ryan’s therapies and programs.  Then again, I would also be stressed out if I wasn’t working because I would be worried about money, and plans we have. I also don’t know HOW to be a stay-at-home mom. It would be a big change, a huge adjustment in my life.”

 

So, we talked in detail about our financial status: debts, savings, RSPs, RESPs, RDSPs, insurance, medical coverage, etc.  I explained to Rod why I have fears about not having my own income.  We talked about what in our lifestyle and future plans would have to change:  what I’d do when I need to buy something for myself or the kids; how Rod will have to retire a few years later than he’d originally planned; waiting a few more years for a new car; how we won’t be able to do the major home renovations or put in the pool like we’d always planned.  Rod feels his income is sufficient to keep the family stable as it is now, with some of our luxuries cut off; and he explained that his earning potential is only going to grow in the coming years, so there are no worries on that count.

 

We talked about how our roles would change, too.  Naturally, my focus would be the home and the family.  Rod’s one big emphasis is that I would have to start cooking supper again.  I assured him that with the post-operative changes to my diet, home-made, healthy meals would become imperative anyways.  Things might be unpalatable at first, but I would have the time to learn to cook!

 

I think the timing of Rod’s proposal is interesting.  I received a letter from the school board informing me that I am a “supernumerary teacher,” meaning that due to my place on the board’s seniority list, I may be either laid off or moved to another school next year.  (In fact, half our staff of 11 got supernumerary or layoff notices.  It was mind-boggling.)   Furthermore, St. Michael’s is always under threat of closure, since the Board is not mandated by the province to run our school.  We could be closed at any time.   

 

I know I would not want to work anywhere else except with the adult students at St. Michael’s.

 

Things at St. Michael’s are changing, too.  The Board announced they are taking away our Vice Principal next year. We will not have one. Our current student secretary is also retiring, and they are replacing her with someone who will only be in 3-4 days a week.  This is outrageous.  Not to mention the possible staff layoffs as mentioned earlier, separating our wonderful, close-knit staff.

 

After running all this through my mind, I’ve decided to accept Rod’s offer. Technically, I have applied to the school board for an unpaid leave of absence for one year. I'm nervous about cutting all ties entirely until I know we can handle this major lifestyle change. However, I have yet to hear from the school board regarding the request, and if they do not honour it, I will resign my position.

 

I feel like now is the time to leave.  It will give me the time to focus on myself after surgery and the big lifestyle changes that come with that.  It will give me time to focus on Kevin, to ensure he has a smooth transition into grade 1. I also like the idea of finally being more involved in Andrea’s school experience: being able to participate in field trips, attend her concerts and assemblies, etc.

 

It will give me the time to focus on Ryan, too, as we move forward with the Summit Centre. Because, yes, we’ve had great news there!  Ryan starts their STEPS daycare program on September 3 and 5, and will be going full-time starting September 9. This program has hours that would interfere with my work hours. It also has parent participation requirements that I would not be able to take time from work to fulfill. The STEPS program has a home-day once a week—Thursdays—that I would have needed to be home for anyways.  There are also mandatory observation days where parents go in with their children for the day and watch the therapists implement the child’s program. Furthermore, I'll have more time to dedicate to doing monthly STEPS homework and implementing Ryan's ABA program at home. Unfortunately, I have seen regression in Ryan since we finished Unity, making it all too clear that he is a child who needs daily, intensive ABA therapy for continued progress.

 

Of course, I do have concerns about not working. I wonder if I will go crazy by myself, at home.  I know I will miss teaching—a lot!  I worry that I won’t live up to Rod’s expectations as “head cook and bottle washer” (although I warned him to be patient—there will be a MAJOR adjustment period!).  It will be awkward not having my “own” money.

 

One thing I also worry about is what people will think.

 

I know many people in our family are so proud of me being a teacher.  I feel like I might be disappointing them by suddenly ending my career.  I also fear that people will judge me as being weak or lazy, taking the easy way out. They might even see me as a failure, unable to handle both career and family, as so many others manage to do. Maybe I even feel a bit this way about myself.

 

Of course the legacy of Aunt Julie is on my mind, too. I’ve always marvelled at how much we’ve had in common, and tried to make her proud.  But part of me hopes she would understand what I’m going through.  If she had lived to mother her children on the Autism spectrum, I’m sure she would have done anything, made any sacrifices, to ensure they had happy lives and reached their fullest potential.  I don’t know if she would have given up teaching for them. Maybe she would have been strong enough to do it all.  I hope she wouldn’t be disappointed by my decision.

 

I guess I'm not the "Supermom" everyone thinks I am.  I'm human.

 

Thus, The Road Not Taken has suddenly become a major metaphor in my life.  I never saw this divergence coming.  I don't know what's around the bend.  I don't know what regrets I may have by choosing this unexpected path, but I also don't know what blessing may come my way.  I'll wonder what would have happened if I stayed on the one path, and I'll worry over the unfamiliar territory I'm about to explore on my new path. 

 

 

"It may be when we no longer know what to do, we have come to our real work, and that when we no longer know which way to go, we have begun our real journey."
Wendell Berry


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! ;)