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?