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?