Kevin's Psychoeducational Assessment Results

Yesterday, Rod and I went for a meeting with the doctor who performed Kevin's psychoeducational assessment last month, and she gave us the results.

I had been worried that Kevin would perform so well in the one-on-one, zero-distraction interactions that she wouldn't be able to see what we see on a daily basis.  Yes, she also had us and Kevin's teacher complete a pile of assessment questionnaires, but would our answers match up, and would she find them valid?  For the most part, they did. And yes, she did.

It was a bit overwhelming to receive A REPORT 22 PAGES LONG, but I couldn't have asked for anything more thorough or detailed.  This included over 5 pages of extensive recommendations, mostly for the school, but also for us at home.

Because the report is so complex, I'll try to stick to summarizing the most important points.

DIAGNOSIS

1. Autism Spectrum Disorder (Without Accompanying Intellectual and Language Impairment)--Level 2: Requiring Substantial Support
2. Unspecified Anxiety Disorder
3. Unspecified Depressive Disorder
4. Specific Learning Disorder
5. Impairment in Written Expression (Spelling, Grammar, Organization) - Mild to Moderate

My Comments and Some Explanations on the Diagnosis

1. I was really surprised, but also pleased, that Kevin is now recognized as having ASD: Level 2. His old diagnosis of "Mild Autism" would likely have put him in ASD Level 1.  I'm hoping the school will take his diagnosis more seriously now that they will see the increased need for supports. Here is a table which gives a basic explanation of the ASD Levels. (click on it for a larger view)
   
2. His psychiatrist had already diagnosed him with Anxiety Disorder. "Unspecified" simply means that there are lots of different types of anxiety disorders out there, and Kevin's symptoms don't all lend themselves to one particular type. It's good to have this formal diagnosis from a second professional and on paper, though.
3. The Depressive Disorder means yes, Kevin shows signs of depression, but again, his symptoms don't lead to one particular kind of depressive disorder.  I know, you're probably thinking, "Kevin? Depressed?" but remember depression shows itself in more ways than just the sadness and suicidal thoughts most people associate with it.  Kevin displays difficulties with "emotional distress" and sometimes "feelings of helplessness, hopelessness, and worthlessness." His "socio-emotional difficulties" are "negatively impacting upon his self-esteem," and he is "self-conscious." I don't like to talk about it much, but Kevin has had outbursts during his upset or meltdown moments where's he said things like, "I wish I was dead!/I'm just going to kill myself!/I can't do anything right!/I hate my life!/There's nothing good in my life!"  Those moments break my heart.  I honestly don't think he'd ever hurt himself, but just knowing he feels that way about himself/his life is devastating.  Plus, if you click on this link, and scroll down to "How Can I Tell if My Child is Depressed?" you will see that depression can show up in kids in other ways like irritability and difficulty concentrating, too. The doctor thinks that we can do a lot to help Kevin's depression by getting him more of the supports he needs, especially in the classroom. If he feels more confident in his learning and less self-conscious, it would ease his other issues.
4. The Specific Learning Disorder is interesting.  It doesn't exactly have a name. But what we see is that he has some kind of Visual Learning disability. His Visual Spatial Index Score on the Wechsler Intelligence Scale shows him to be in "Average" range; however, as I'll discuss later, this doesn't fit in with his incredibly high scores on the other parts of that scale. The doctor noted, "He encounters difficulties with analyzing and synthesizing abstract visual stimuli (e.g., completing visual puzzles in his mind)."   Kevin's Processing Speed Index also fell into Average range (the ability to process visual information quickly under a time pressure), but again, this doesn't match up with his superior scores on other areas of the scale. Kevin frequently "required extra time to produce his responses" and "his performance suggested some difficulties with his visual memory." 
5. The Impairment in Written Expression is reflected in Kevin's scores on the Wechsler Individual Achievement Test (academic).  In all areas he was in a 4th to 8th grade level (remember, he's in grade 3), except Alphabet Writing Fluency and Sentence Composition; both of those were at a grade 2 level. Once again, Kevin "required additional time to output his responses." He also "adopted a labour-intensive approach to writing." Kevin is noted to lack "a basic foundation for the conventions of written language" and "demonstrates difficulties with his fine motor skills and the mechanics of writing."  You might be thinking, "Well, he's only a year behind." But the doctor's summary explains the problem here very well: "It will be important to perform verbal testing with Kevin or have a scribe assist him with outputting his thoughts on paper to ensure an adequate representation of his abilities. Without ongoing remedial assistance . . . the gap between Kevin's level of academic achievement and that of his peers will continue to increase over time."  In other words, his writing abilities can't keep up with, and don't reflect, his level of intelligence. And it will only get harder as the demands of schoolwork increase as he gets older.

EXECUTIVE FUNCTIONING

People with autism often have deficits in what is called Executive Functioning. Here's a good page with information about understanding executive functioning issues in children. Basically, executive function "describes a set of cognitive abilities that control and regulate other abilities and behaviours." The rating scales we completed for Kevin's assessment looked at "attention, emotional regulation, flexibility, inhibitory control, initiation, organization, planning, self-monitoring, and working memory." The results suggested "significant executive functioning difficulties" at home and 

and "minimal executive functioning difficulties" at school (although many of the ratings the teacher gave on this scale contradicted similar ratings she gave on other questionnaires, baffling the doctor; maybe the teacher was trying to focus on his best days?).

Anyway, in both home and school environments, Kevin shows "significant difficulties with Emotion Regulation, Flexibility, Inhibitory Control, and Initiation."

To summarize, "Kevin's scores suggest that he may have difficulty handling his emotions and recognizing the consequences of his reactions, especially during highly stressful situations ..."  Well, we knew that!

The results also show that "Kevin may have difficulties beginning, starting, or 'getting going' on tasks, activities, and problem-solving approaches appropriately." However, in the doctors' closing notes, she made an interesting point that I hope Kevin's future teachers will take into serious consideration:  "It is important to realize that deficits in executive functioning can often appear to reflect non-compliance or disinterest in a task or activity on the part of the student, but that for Kevin, this likely is not the case." It's a new perspective for me, as well. I know Kevin's behaviour always has a cause, and I try to keep that in mind, but I wasn't aware how much executive functioning deficits can impact daily life. However, there are skills which we can teach Kevin to help him compensate for his executive functioning difficulties. The doctor put some ideas in her recommendations.

STRENGTHS

It's time to focus on Kevin's assets.

But can I say just one thing here? This kid is complicated. To quote the report: "Kevin's Full Scale IQ  . . . cannot be meaningfully interpreted as there was too much variability among his index scores. A better representation of Kevin's overall intellectual ability [includes focusing on the individual] estimates of his abilities in . . . five areas." In three of the five areas, he is in Superior/Very Superior range.

To sum it up: My child qualifies as both gifted and having a learning disability.

But back to the STRENGTHS:

• Kevin has a Verbal Comprehension Index Score in the 99th percentile--Very Superior range.     "[H]e has superior abilities when using words to express his ideas and to solve problems," and "is able to successfully reason about information that is both simple and complex."
• Kevin has a Fluid Reasoning Index Score in the 95th Percentile--Superior Range. "He has superior abilities when comprehending tasks that involve patterning and whole-part relationships and understanding the concept of equality among visual objects. He is able to effectively use his quantitative reasoning skills and follow a logical pattern through to another conclusion."
• Kevin has a Working Memory Index Score in the 98th percentile--lower end of the Very Superior Range. "He has superior ability when he is required to memorize new information and hold information in short-term memory and when he is required to concentrate and manipulate that information to produce some results."

Academic Achievement: [keep in mind he is currently in Grade 3]

• Word Reading: Grade 7-8
• Pseudoword Decoding: Grade 6
• Reading Comprehension: Grade 5-6
• Spelling: Grade 4-5
• Numerical operations: Grade 4-5 

As a lead-in to the discussion of the doctor's recommendations, I thought I'd share this paragraph she wrote under Kevin's Academic Achievement results section.  It is extremely important to be aware that he can only access his strengths when the proper accommodations are in place:  

"It is important to note that Kevin often required constant repetition and redirection during the academic portion of the assessment session. He encountered difficulties with working quickly during independent work. Without one-on-one support and redirection, his scores would have been significantly reduced. [emphasis mine] This has significant implications in terms of the amount of information he will retain in the classroom setting."

RECOMMENDATIONS

As I said at the start, there were over 5 pages of detailed recommendations for both school and home. To keep it brief, I'll only highlight the ones that really stood out to me:

• It is essential that he have the following assistive technology: personal laptop computer, printer, scanner, and associated software (voice-to-text, text-to-voice, Word Cue, Smartideas, etc.)*
• consultation from an Occupational Therapist; assess Kevin's difficulties with fine motor skills and provide him with appropriate treatment*
• continued assistance from a Speech and Language Pathologist for articulation and fluency*
• extra time to complete written tasks and copies of information that is written on the blackboard*
• It is important to check for comprehension when providing Kevin with instructions to complete a task, especially if that task is more abstract/less structured (i.e. have him paraphrase instructions and information in his own words before beginning the task).
• For executive functioning, teach Kevin problem-solving processes in which he learns to describe problems, set a goal, establish ways to reach the goal, and evaluate the outcome.
• He would benefit from having pictures paired with words whenever possible.*
• Kevin should have a multi-sensory learning experience
• recognition of Kevin's strengths, interests, and accomplishments will be critical to his ongoing motivation; his efforts should be liberally recognized and reinforced
• he would benefit from individual therapeutic interventions to assist with self-regulation, emotional control, social skills training, and provide him with coping skills
• Kevin's difficulty regulating his behaviours and emotions should be addressed through development of a specific behaviour plan* 
• Do not expect Kevin to acknowledge he is sad, frustrated, or upset.  In the same way he has difficulty perceiving others' feelings, he struggles to identify his own feelings.  Visual aids (like a faces chart) would help him identify his feelings and advocate for help.
• would benefit from accommodation often provided for children with anxiety: preferential seating, frequent cueing, increased time to complete asks, incentive programs, removing pages from workbooks, textbooks, etc. to present one at a time to prevent him becoming overwhelmed
• Kevin worked well with one-on-one support and was noted to persevere with encouragement and positive feedback.  In other words, he needs an Educational Assistant (EA) nearby at all times.* He needs constant repetition of instructions and redirection to stay focused on the task at hand.
• We should request an IPRC (Identification, Placement, and Review Committee) meeting for Kevin.  It would make his identification formal and any accommodations requested legal and binding. However, we would likely have to fight for that as the Catholic school board no longer does IPRCs.
• Similarly, we must insist on a formal IEP (Individual Education Plan) for Kevin.* He requires many accommodations to be successful in school and should be provided with as much assistance as possible from the Learning Support Teacher. 

*These are things that are not currently in place for Kevin, and that the school is obligated to provide, given his diagnosis and needs.

At the meeting with the school that I requested last month, I emphasized the need for a behaviour plan and an IEP.  They were going to formulate a behaviour plan, but were hesitating on the IEP.

I am hoping that, when presented with this new document, they will read it THOROUGHLY and take it SERIOUSLY, and begin implementing all these recommendations. Now that we have a new, current, and very thorough assessment in front of us, I see no excuse for them to deny/minimize Kevin's needs any longer.  

I feel it's time to go into battle. No more timid, nice-nice mama. I can see now, very clearly, how Kevin's deficits are holding him back and making his time in the classroom very difficult for him. My child is GIFTED. We need to ensure that he is able to harness those gifts and reach his full potential. We need to make his classroom experience as positive as possible. In doing so, we can increase his comfort level, decrease his negative self-image, and let him shine! <3

Ryan's Assessment Results

I finally received Ryan's results from his "post-treatment" neuropsychological assessment for the time he spent at Summit Centre. (The assessment was at the end of November!) I've been really anxious to see, in official numbers, what progress he was able to make over the 2 and a half years we worked with them doing intensive ABA therapy, between the Unity program and the STEPS program.

During the assessment, the testing person asked me a question which made me pause and reflect, and I was hesitant to answer, at first: What age do you think Ryan is at, cognitively and developmentally? Considering he's your third child, in comparison, at what age would you place his skills?

I wasn't sure how to answer that. Wasn't that why I was here? To get a professional's opinion on this?

I replied, tentatively: "A year to eighteen months?"
It turns out, I was pretty much spot on.

The Big Numbers

I'm going to get into some detail here, as much to organize my own thoughts as anything else.

MSEL Early Learning Composite Score, 2013: represents a developmental level of 7 months old
MSEL Early Learning Composite Score, 2015: represents a developmental level of 12 months old

Adaptive Behaviour Competence Score (VABS-II), 2013: places his overall level of functioning in the low range; equivalent of 8 months old
Adaptive Behaviour Competence Score (VABS-II), 2015: places his overall level of functioning in the low, moderately deficient range; equivalent of 13 months old

According to both of the major assessment procedures, Ryan gained about 5 months of development over 2.5 years of intensive ABA therapy.

More Detailed Numbers/Comparisons (in age equivalents)

MSEL

Visual Reception: 2013--7 months; 2015--11 months gained 4 months
Fine Motor: 2013--8 months; 2015--16 months gained 8 months
Receptive Language: 2013--9 months; 2015--14 months gained 5 months
Expressive Language: 2013--7 months; 2015--8 months gained 1 month

VABS-II

Receptive Language: 2013--9 months; 2015--6 months LOST 3 months
Expressive Language: 2013--5 months; 2015--8 months gained 3 months
Written Language: 2013--22 months; 2015--no change
Personal Skills: 2013--6 months; 2015--20 months gained 1 year 2 months
Domestic Skills: 2013--7 months; 2015--10 months gained 3 months
Community Skills: 2013--<1 month; 2015--no change
Interpersonal Relationships: 2013--6 months; 2015--no change
Play and Leisure Time: 2013--8 months; 2015--no change
Coping Skills: 2013--10 months; 2015--2015--7 months LOST 3 months
Gross Motor Skills: 2013--18 months; 2015--28 months gained 10 months
Fine Motor Skills: 2013--11 months; 2015--18 months gained 7 months


My Thoughts

Although I'm not surprised by the results, I'll admit I was hoping to see more gains.  I also do not agree there has been no change in the Play and Leisure Time and Interpersonal Relationships categories. I feel like I've seen improvement there. I also don't see how he's lost skills on the VABS-II Receptive Language and Coping Skills categories.  Maybe there's more of a disparity between what's expected at his chronological age now, since he was only 3 at the time of the first assessment and almost 6 at his most recent one?

This brings me to another point. While I'm happy to see so many areas with at least some gains, you've got to keep in mind that he was only 3 years 2 months old at the first assessment and was 5 years, 9 months old at the second assessment.

In 2013, he was 2 years, 5 months developmentally behind for his chronological age.

Now (2015), he is 4 years, 9 months developmentally behind for his chronological age.

The developmental gap has not diminished. It has basically doubled.

I had hoped these results would give me a clue as to where to go from here in terms of Ryan's therapies.  It turns out I'm more confused than ever.  Did he make gains doing ABA? Yes. Did he learn some new skills? Yes. Is it worth continuing to pursue intensive therapy privately? That I don't know.

The doctor's summary of "Implications" at the end of the latest assessment report has changed very little from the one in 2013. The main points haven't changed, and the wording is essentially the same:

• "Ryan will learn best in a highly-structured environment . . . consistent expectations . . . clearly defined rules . . . modification and accommodation . . . . Verbal directions should be clear and concise . . . visual aids and extra cueing . . . The use of nonverbal (pictorial, gestural) cues . . . tasks should be concrete and involve an active hands-on learning . . . provided with ongoing corrective feedback regarding his performance . . ."
• "Focusing on basic compliance tasks (e.g., working at a table, transitions, waiting, taking direction from a non-familiar adult) is imperative and will eventually facilitate his ability to participate in any future placements he attends outside the home (e.g., daycare, recreation program, school)."
• "It is important that Ryan receive support in developing his receptive and expressive communication skills, social skills and daily living skills."

Well, yeah, we have been doing all that since 2013, and we continue to do that at home and school. But again, the question is, should we be doing this as intensive therapy sessions guided by ABA professionals, or should we simply use the tools we've already learned to apply in incidental learning at home and school?  Is the incidental learning enough?  Would he make more progress back in a setting of intensive, one-on-one therapy with professionals? 

I don't know.  It took us 2 and a half years to gain 5 months, and we're still almost 5 years behind.  

What I do know is that I will never give up on him.  I will never stop trying to teach him the skills he needs to interact appropriately with others and take care of his daily living needs. It's more of a question of how hard we're going to push, what approach we're going to take, and what is best for Ryan emotionally and physically.

I stepped out of the room mid-blog, and came back to find Ryan inspecting my work. ;)

Ryan: Where do we go from here?

Okay, so much on my mind lately and I just need to vent. I'm not really asking for advice here; I'm just sharing my thoughts.

So, Ryan.

Where do we go from here?

I'm still waiting on his discharge assessment results from Dr. Saunders after leaving Summit Centre. Yeah. That was in November, and I call every few weeks to see if they have them yet.

I will admit, I have dropped actively doing his ABA programs since he started school full time. There's a few reasons: 1) to give him to adjust to full time in the classroom 2) because I really wasn't seeing major progress with his ABA programs 3) because he seems tired after school, and I don't want to burn him out with full time school plus ABA programs.

I've been questioning myself constantly about what the next step should be.

Two things in my mind stand out as important general goals: 1) self-help/daily living skills and 2) establishing a functional mode of communication.

The question is, What's the best way to go about this?

I know Summit Centre would say get back into ABA immediately. There WAS progress. But it was tiny. And incredibly slow. They'd say use PECS. But we never got past Phase 3. And it only worked in discrete trial ABA sessions; it never carried over to the natural/incidental environment with Ryan.

At school, they've been trying the core board for communication. The only picture Ryan will tap is "more."  It hasn't carried over to anything else, and he already has a sign for "more." That seems redundant to me. I think it does to Ryan, too, because he would get mad and sign more repeatedly while ignoring the core board with me.

I keep reading/seeing more and more stories about nonverbal kids and adults with autism who have learned to communicate. When they express their thoughts and feelings, I get so anxious for Ryan. These people are highly intelligent, but before they could communicate, you would never know it. I wonder, What is Ryan thinking? Does he understand everything I say? Does he feel trapped in there and long to share his thoughts with the world? Is he learning from his environment?  Is he picking up on classroom lessons, like letter and number recognition? Is he learning things from watching educational kids' shows?

WE JUST DON'T KNOW!

So far, we have no real measure of Ryan's cognitive capabilities. There have been no eye-opening breakthroughs, and all assessments to this point have suggested significant cognitive delay, but that's because he can't respond, so HOW DO WE REALLY KNOW?!

That's also why I don't know where to go from here. I don't want to waste years and resources and put stress on Ryan and ourselves for therapies that are doing little to nothing. But I don't want to settle into acceptance of things as they are when there might be potential for a major breakthrough with him ... If we could just find the key.

I am so confused. I am so frustrated. I feel like I'm groping around in the dark in an unfamiliar place trying to find that light switch.

Should we go back to what we know (ABA)? Should I start trying harder with the core board? Should I switch it up and start investigating things like Pivotal Response Training or Rapid Prompt Method?

I don't know. I just don't know. I feel overwhelmed.

He Always Keeps Me Guessing . . . !

Warning:  This story involves fecal matter. However, if you're an autism parent, you know our life is full of conversations about poop! And although this story starts out in a rather alarming fashion, don't worry: it turns out okay. ;) 

I was trying to do some banking on the computer when I overheard Ryan creating a racket in the kitchen.  By the sound of the noise, I could tell he wasn't getting into anything harmful. I also knew from the type of ruckus he was causing that it was the kind he usually makes when he's in the process of doing a BM.  I won't get into the particulars, but he has a habit of getting hyper and crashing the blinds around as part of his routine. So, I waited for things to mellow down (and for the smell to waft over, so I knew for sure he needed a change) before I went to check on him.

I walked into the kitchen to get him, but he wasn't there, so I headed down the hall and into his room. He was standing over by the bed, playing with a toy. I went to take his hand and bring him for a diaper change when I saw THIS:

"Uggh, RYAN BITS!" I groaned.  (Nothing new there, but it's still gross. Occasionally, Ryan's little BM pebbles escape his diaper and end up on the floor.  We've nicknamed them "Ryan Bits.") Anyhow, I made note of the bits and went to grab Ryan's hand to lead him to the bathroom when I spotted his fingers.  They had brown smeared all over them. Double ewwww! But again, we've dealt with this before. Once in a while, he gets his hands into his diaper or the bits. So, I took a breath (not too deep: he's pungent) and reached for the wipes to do an emergency hand clean-up.

That's when I noticed his MOUTH.

O-M-G. Now I was losing my cool.

"Ryan, that is so freaking gross! Let me see your mouth! Ack! Yucky!"

Meanwhile, Ryan was laughing like this was the funniest thing ever, and trying to run away from me. As he darted to the opposite corner of the room, I saw THIS:

Wait a second . . . Wait a second . . . Is it? Please, let it be . . .

CHOCOLATE!

Ryan has stolen a Hershey's bar out of Kevin's candy bag, chewed it open, and spit out chunks of chocolate all over the place . . . I think.

I'm still not sure. It looks an awful lot like Ryan Bits! And, he does have a BM in his diaper. Hmm . . .

Sniff check time! 

Mouth/Breath: Chocolate.
Hands: Chocolate.
Stuff on Carpet: Chocolate.

Stuff in Diaper? Well, that's a BM. I'd be worried if that was chocolate!

***

After everything was sorted out, I had to laugh at myself. And at the situation. Can you say "comedic timing"? What are the chances that Ryan would have a BM and scatter little bits of chocolate all over the place at the same time? It still can't get over how much they looked like Ryan Bits and how it all came together. Knowing Ryan's history, you wouldn't blame me for my confusion! ;)

This kid. He always keeps me guessing! :D 

Breakfast with Santa

I knew today was going to be an emotional roller coaster.

Ryan's class had a very special field trip planned: Breakfast with Santa. 

Now, I honestly don't know if Ryan understands who Santa is, or even what Santa means.  But as with everything his class does, I wanted him to be a part of it. And I wanted him to have fun.

I have also learned, though, not to set myself up for disappointment.  I knew there would be a lot of challenges for Ryan today. He had to ride on a school bus with his classmates to the location of the breakfast.  He's only ridden on a school bus once before, for a field trip last year, and I was there to keep him calm. He's always nervous approaching new vehicles, or vehicles he doesn't travel in often--even Daddy's car! Plus, you can imagine how loud that bus gets with sixty excited kindergartners on board! Furthermore, they were coming to an unfamiliar setting (the Knights of Columbus hall).  Add to that, they were going to stand in front of parents and guests and sing a few Christmas songs. Then, they were going to have a buffet-style breakfast in this new place. And to top it all off, after breakfast, they would get to visit with the Big Man himself: Santa Claus! Can you imagine how much stimulation this would be for my sweet little Ryan to take in, along with over 50 exuberant classmates and their families? 

Really, my goal was to have him peaceful and content. I didn't care if he didn't want to eat the food, or participate in the concert, or sit with Santa. I'd be a bit disappointed he wasn't joining in the fun activities, sure, but his well-being was more important to me. I was so anxious about him having a good time that I was totally stressed out, so I was grateful Daddy could come for a while, too. Daddy's relaxed energy would balance out my nervous energy, and I've noticed Ryan is sensitive to the energy around him.  Daddy would be good at helping everyone relax a bit amidst the "Christmas chaos," as one EA was calling it.

Anyways, on with the story. The parents drove themselves to the hall separately, and the children arrived by bus a little bit after. When the bus finally arrived (20 minutes late!), I was relieved to see Ryan walk in with huge grins and happy sounds. He gave me a great big smile when I went to collect him from the EA, so he could sit with me and Daddy at our table. Mrs. F. (his morning EA) said he had been shaking like a leaf when they boarded the bus, but she gave him his noise-cancelling headphones, some deep-pressure squeezes, and once the bus started rolling, he loved the ride!

Ryan was in a great mood after his bus ride! He was enjoying the red and green light show on the ceiling. :)

While we waited for the activities to start, the kids had Christmas-themed pictures they could colour. Ryan's was a squirrel holding a candy cane.

Once everyone was settled in, the kindergarten classes each went up to the front and presented a few Christmas songs. Ryan's class went second.  While he was in the show, Mrs. F. stood behind him to help him stay steady and relaxed.  He looked a little lost in his own thoughts up there, but at least he was content.

Ryan's class: It's easy to spot him. He's the only one wearing head-phones. ;)

He looks pretty happy up there.

Ah, a big stretch between songs!

So, he made it through the bus ride, sitting and colouring, and all the performances without a hitch. But as we got ready to line up for the buffet, he started to get upset. Daddy took Ryan and got some fruit and drinks from another area. Once Ryan was settled at our table with some grapes, he was okay for a while.  The breakfast was so-so: he tried (and spit out) the scrambled eggs, bacon, bun, and pancakes.  However, we discovered he LOVES tater tots!  In the end, he had a lovely breakfast of grapes, tater tots, and water! But he was getting increasingly restless.  Unfortunately, since things were running rather late, Daddy had to head back in to work before Santa arrived. (It was nice that the teachers and EAs finally got to meet him, though.)

Once everyone was finished eating the breakfast, they called the children to the front of the room to prepare for Santa's arrival.  I could see the EAs had their hands full with other little ones (and were trying to get a few mouthfuls of well-deserved, much-needed coffee!), so I took Ryan and sat up front with him in my lap. He seemed content to curl up with me, and we rocked along as the other children sang "Here Comes Santa Claus," "Jingle Bells," and "Happy Birthday (to Jesus)" while we awaited Santa's entrance.

Suddenly, Ryan just lost it.

I mean, I knew it had been building up throughout breakfast, but I had hoped we'd been able to bring him back down.  But no.  He started to wail, and push away from me, just as Santa came in the door. The thing is, he couldn't even see Santa from where we were. All the other kids stood up and ran across the room to Santa, so Santa was lost in the melee.  I think it might have been that he sensed the sudden, dramatic spike of energy in the room, and it tipped him over the edge. He just couldn't handle it. He was throwing himself around, trying to run away, and sobbing so hard he was choking.  Mrs. F. came and took him for a walk to try and settle him.

As she led Ryan away, Santa approached a little side group of Ryan's special needs buddies. These little boys' eyes lit up, and they each gave Santa a big hug. It was so sweet.

I tried not to cry. I watched the joy those boys and their families and caregivers were experiencing, and my heart dropped as my gaze settled on Ryan, across the room, in his EA's lap, thrashing around and howling with tears. It was so unfair. All I wanted was for my little boy to have an enjoyable experience.  The other children were gathering around Santa, brimming with wonder and delight, while Ryan sat off to the side with his tenderhearted EA trying to soothe him.  I was heartbroken.

I stayed away.  Although I longed to be the one comforting my boy, I knew he'd sense my anxiety and sadness, and it would just make things worse. So I watched, from a distance, as the other kids had their turns visiting with Santa. I watched, from a distance, as Mrs. F. handed Ryan over to Mrs. S., his afternoon EA, so she could try and calm him, because he was still battling with himself.

Finally, after about 20 minutes, Ryan began to relax.  I watched as a little friend, Z., went up and chatted with Ryan and made him smile.  I decided it was safe to head back over there to see Ryan.

[On a side note, I have seen Z. go up to Ryan in the playground, when Ryan was upset, and talk to Ryan, or make silly faces, or try to tickle him.  I asked Mrs. F. about it, expressing how sweet it was, but how I was concerned with the way Ryan sometimes ignored Z. or pushed him away. Mrs. F. said not to worry; Z. sits at Ryan's table in class and understands Ryan's moods well. Z. is often the one to cheer Ryan up when he gets upset in the classroom. How awesome is that? As Mrs. F. said, it's wonderful that these kids will grow up with Ryan, so they'll be his classmate-friends/advocates in the future.]

Ryan was much calmer when I got to him. He was tired, and just wanted to snuggle in my lap.  Mrs. S. asked if I wanted to try having Ryan visit with Santa, but maybe we'd wait until the end, so the energy level would be more peaceful. Then, she had an even better idea: How about she asked if Santa could come over here in this quiet spot, and visit one-on-one with Ryan, once the others had their turn? That way, Ryan wouldn't have to make another transition, and we'd be in a more relaxed atmosphere. Thankfully, the organizers agreed. So, Santa finished visiting with all the other children.

And then, the magic happened.

Santa slowly approached our table, surrounded by a group of eager children.  The teachers stepped in, and gently shooed them back, reminding them they'd already had their turn with Santa. This was Ryan's time with Santa.

At first, Santa sat down on a chair across from Ryan while Ryan stayed in my lap.  He spoke to Ryan softly, reached out and stroked his hands, and gave Ryan time to adjust to this colourful stranger.

Next, he showed Ryan the set of bells he was carrying. Santa told Ryan that if he looked really closely into the bells, he might even see Rudolph in there! He let Ryan hold and play with the bells.

                                                           

After a bit of friendly chat, he leaned in and asked if Ryan would like to come and sit with him, and maybe give him a hug.               

                                             

When Santa held out his arms, Ryan jumped off my lap and walked right into them!

                                                 

Yay! 

Then, Ryan discovered the best thing about Santa: He gives AMAZING hugs!

And Ryan loves a good squeeze!

Ryan also learned that Santa's beard tickles a lot!

       

 In the end, Ryan had a wonderful visit with Santa.

To quote the teachers' and EAs' message in Ryan's communication book today: "Ryan's smile when he sat with Santa totally made our day! :)" In fact, when he first moved from my lap to Santa's, and that huge grin appeared on his face, his EA from last year was so moved that she burst into tears--and soon all the teachers, EAs, and myself gathered around them were all shedding happy tears, too! There was so much magic in that moment: Ryan's joyful acceptance of Santa's kindly overtures, the love I could feel radiating from the school staff for my little boy . . . So awesome.

When I shared a message or two on Facebook about my roller coaster of emotional experiences this morning, a friend and fellow autism mom wrote, "The lows are oh so low..... but the highs are just unbelievably indescribably amazing." Exactly. 

Kevin's Thoughts on Autism

We had a tough morning.

Kevin was in tears, and refused to participate in any of his morning routine, because he simply couldn't understand why he has to go school. To him, it is unfair.  Why do we only get 2 days for the weekend, but there are 5 days of school?  Why can't he stay home and play on his computer, where he is happy? Why do we force him to eat breakfast, get dressed, brush his teeth, and put his coat and shoes on EVERY SINGLE DAY? 

In my mind, it was more like, why do I have to go through this debate almost EVERY SINGLE DAY? Why can't he simply accept that some things just are the way they are, some rules must be followed, that sometimes, we don't have a choice in the matter? Sometimes, life ISN'T fair, but that's too bad; being a part of society requires we fulfill certain responsibilities, whether we like it or not.  

Still, it breaks my heart every time the anxious, harassed, overwhelmed mom in me doesn't have the patience to deal with these meltdowns, loses her cool, begins yelling and manhandling this boy, simply because she doesn't have the time or energy to deal with this in order to get him to school on time.

I wish I had a better understanding of how to reach my boy, soothe his school-related anxieties, and peacefully reason him into a positive mind-set to prepare for the school day ahead.

I also wish I understood more about how his brain works.  What is he thinking? Why does he feel the way he feels? 

This led me to contemplating how my 8-year-old son perceives his autism.  

I recently read a heart-wrenching story about a young girl who was writing notes to her teachers and parents from her hiding spot under a desk at school, where she placed herself because she feared others perceived her as "bad." Kevin has told me in the past that he has "the kind of autism that makes you be bad."  While I quickly corrected his misconception, we haven't had a serious discussion about this in a while. This afternoon, I decided it was time to have a chat with Kevin about how he views his autism.  Has he let go of his previous misconceptions? 

Here is a transcript of our conversation.  I've written it in his voice, using his exact words, so you can feel the rhythm of his speech and thoughts.

If someone asked you, "What is autism?", how would you explain it to them?
Well, I would say it makes it a lot harder to control yourself. And it can also give you special needs.

What kind of special needs?
Something like, you can get tired easily.  You have something you like, so you don't do it. That kind of thing. Special needs.

How do you feel about having autism?
Well, it feels kind of strange because some people don't have autism. Plus, it makes it feel a bit harder, which I don't like that part.  But it is true that, on the other side, autism can make it good. Because probably without autism, I wouldn't have all my sounds. Yeah, I like my sounds.

Speaking of your "sounds," why do you make noises, instead of using words, to show your feelings?
The reason I do that with my sounds is since, I was just like, born like that.  But another way to describe it is that I decided from my autism it might have made it for that reason.  And the reason why I actually do it though is because I use my sounds to explain how my mood is, but it's usually hard to tell what's wrong, though.

So, is it easier for you to use sounds than words?
Yeah, plus I have to use less words often.

Is using words hard for you sometimes?
Yeah.

What do you want people to know or understand better about your autism?
I wish they would understand, like, some of my own special needs for autism; and for the people that do know that, understand my sounds more since I use them more often.

So, what kind of "special needs" do people need to understand? Can you give me some examples?
So, something like one of my special needs is I can get angry easily. That if I get angry, there's not too many ways to calm me down, though.

Is there anything people can do to help you when you're upset?
Well, sometimes like, they can, based on like who it might be, sometimes just like trying to make up and saying sorry just like usual people, though.  And there is a few more ways like if I kind of stay in one room by myself with a little bit of quiet. And it's also sometimes easy when I can, like, usually sometimes just play on my video games and not lose or anything; that might calm me down.

Why do you get so upset about going to school most days?
Because 1) I just like to play on my computer, and the thing is you like, can't bring any electronics to school unless it's a special day like Loonie License Day or something like that.  And otherwise, you do have to do work. But really, there is at least one more thing I should say, which would be it makes it a bit harder because it's much more loud there since there's more people than at home. That's probably all I can remember right now.

Sometimes you get upset even if we're going to places where you can relax and have fun, like Grandma and Papa's. Can you explain why?
Because sometimes I'd rather just relax at home than get dressed or like get ready, having to put my shoes and coat on, and waiting to drive there, even if it's like a short drive, to like Grama and Papa's.

Why is that hard for you, getting ready and all that stuff?
Because like, for my shoes, I have a different way of putting them on, so I kind of pull them back a little bit, but that doesn't really seem frustrating.  It's my coat, because it sometimes, even though it eventually does go up, the zipper doesn't really go up sometimes, which might get a bit frustrating about getting ready.

Remember yesterday, you were sad about there being "lots of people" at Grandma and Papa's. Is it hard for you to go places where there are lots of people?
Well, I was actually sad [voice wobbles] because it was so loud I was getting a little bit of a headache.

Can you explain why you have a hard time falling asleep and staying asleep at night?
It's like, since I was trying to go to sleep, it's like since I was playing on my video games all day, even if I was doing something like playing with my plushes all the next half hour, pretty much doing anything other than relaxing in my bed or something, that can make my body think it's still time to be hyper so it makes it hard for me to fall asleep.

What do you think would happen if we stopped playing video games before bedtime?
That is okay, but there's one little thing, though. That includes like even watching TV, playing plushes, pretty much anything. Yeah, anything makes me hyper before bed.  When I'm in bed, my body thinks it's still time to play because I just played.

So, what do you think we should do to help you relax? Any ideas?
Hmm . . . Well, let's see, like maybe going to bed a bit earlier sometimes?

Do you think you would like that?
No, not really.

What else do you think we could try?
So, I was thinking like, if maybe when I go to bed, like I have something comfy or something, maybe. Something like my plushes, basically. So I can try that.

What do you think about Ryan's autism?
His autism, well, he can't like, talk and he has a harder time learning things and he needs a lot more help than I do to do things.

Is it hard having a little brother with autism, when you have it, too?
Well, when I would have it, too, it does seem to be a little hard at times, but sometimes it feels better when he's happy. Because when he's mad he cries a lot, and since I have like extra-special needs, it makes me really angry, so I start getting angry while he's crying. I don't like it when he cries. It makes me angry because it hurts my ears a lot.

What's one last thing you want people to understand about people with autism?
One last thing is that I do have some like, have some different ideas about about entertaining people. A normal person would play with you to entertain you, while autism people might watch or do something else nobody else can do. Like I do my sounds [blows raspberry/motorboat imitation]. But that's just MY autism.

Tell me some good things about you. What can you do well? What makes you special?
I can do addition.
My autism makes everyone who knows me care about me and love me.
I seem to have talents like being able to control myself once in a while. I also can have fights but they're actually usually not TOO big: nothing really, really, bad.
I have autism. Not actually everyone has it.  Some people do, like me.
That's it.

It was a good conversation.  I didn't really learn anything new, but I could tell he appreciated the fact that I was asking him to share his thoughts. I'm not sure he's ever really contemplated, in depth, his autism; it's simply always been a part of him. I was glad to see that the word "bad" didn't appear in his description of autism; however, I see where I will have many opportunities to teach him more about autism in the near future. I'd like him to understand that autism is about neurodiversity, and that neurodiversity is something that makes him special.  I'd like him to know that "special needs" doesn't refer to his deficits, but more to the ways in which others can support him. I'd like to focus more on his gifts, and what we can do to nurture them, than on the difficult behaviours.  

This conversation is a starting point.

I hope he recognizes that I asked him all these questions because I love him, and I want to help him. I want him to know that I hear him. I do. It may seem as if we are in an endless round of circular debates at times, but I want to keep this precious line of communication open. It is something that many ASD parents long to experience with their child; I know, for I have another little one with ASD, who as yet, cannot share his thoughts with me.  

Homework with Kevin

Talking in circles: Kevin is a genius at doing this until he wears me right down.

Tonight's homework session is so very representative of this.

I tried to capture as much of it as I could, to give you a sense of how this boy's brain works, and how tiring it is for me to grapple with his logic on a daily basis.

I was going to do a Facebook post, but this got too long. As long as it is, it still isn't an exhaustive record of the seemingly endless go-around that occurred throughout our interaction during homework.

***
[Kevin didn't do his weekend journal at school today. He had a tough morning. The teacher sent it home for him to finish tonight. He was not happy.]

Me, prompting him along as we begin homework: Kevin, what did you do this weekend?

Kevin: Nothing.

Me: Seriously? I thought you had a very busy weekend. You have lots you can write about.

Kevin: I don't remember anything.

Me: Well, I remember at least 3 things; you went for a haircut, Uncle Chuck babysat on Saturday night, and we went to Kade's birthday party yesterday.

Kevin: All of those things were boring. Nothing happened. I have nothing to write about.

Me: You didn't do anything fun with Uncle Chuck?

Kevin: No.

Me: Well, I can think of lots of things you did at the party yesterday.

Kevin: I don't remember anything.

Me: You don't remember going in the bouncy castle with Kade? Or showing Aiden your 3DS game? Or playing Minecraft with them? Or eating yummy foods?

Kevin: I don't have enough to write about. The teacher needs 3-6 sentences.

Me: Kevin, if you put ONE sentence about each thing you did, you will have enough sentences!

Kevin: But my teacher wants details, and I don't have enough details! And I don't know which thing to pick.

Me: Okay, I'll pick for you. Write about the birthday party. If you write about ALL the things you did at the party, then you'll have lots of details.

Kevin: But I did nothing at the party.

Me: I just REMINDED you of lots of things you did at the party!

Kevin: I don't want to do this at home. It's SCHOOL work, not HOME work. Is there any way I can NOT do this today?

Me: Absolutely NOT. You have to do it at home because you DIDN'T do it at school today like you were supposed to. It says right here in your agenda: "Kevin needs to complete this at home tonight" because "he would not cooperate this morning." Look. Your teacher wrote that RIGHT HERE.

Kevin, several sighs, moans, and groans later: Will you give me a Popsicle if I "bump it up" and write SEVEN sentences?

Me, worn out by this time, and trying to help Andrea with her homework, too: Sure. We don't have any Popsicles, but I'll give you something if you do a good job on your journal.

***
5 minutes later ...

Kevin has completed his journal. It has seven sentences. Yes, he wrote about the birthday party. And he wrote about the bouncy castle and showing Aiden his game. But all of the details were about Pokemon: how he and Kade played Pokemon characters in the bouncy castle, and what he showed Aiden in his Pokemon game. No, he could not remember anything about his haircut, his evening with Uncle Chuck, or what we did at the birthday party. But somehow, he could remember and name exactly which characters he and Kade pretended to be, and exactly what he showed Aiden on his game.

Seven sentences about being MewTwo and Digger and the "how to play" page on his Pokemon X game.

Autism.
Stickiness.
Focused interests.

Yep.

(He picked Skittles for his treat. Okay.)