IBI Therapy ~ To Be or Not to Be

When we received Johnny’s diagnosis of “moderate to severe” Classical Autism Spectrum Disorder he was placed on the wait list to receive the government funded IBI Therapy. First Johnny had to be assessed whether he was a good candidate for the program which sadly we knew had a 2 year wait list.

Last March we met Psychologists from the program and apparently Johnny tested quite high on the “Vineland Adaptive Behavior Scales” test so they knew then that he would be considered un-eligible but we were not told that at the time. Instead they visited his preschool to see for themselves how he handled a classroom setting which they don’t often do. In the end because of his non-verbal status, inability to play functionally with toys and then need to build social skills such as interactions and turn taking they would put their final decision on hold and see him in one year to see how he is doing.

After a second assessment last Friday the psychologists from the program have let me know that Johnny will not be eligible for IBI therapy because he has already achieved all the goals that they would teach him to learn and be able to be in a regular classroom. After 2 hours of questions and Johnny interacting with the psychologists they said he has tested even higher then last year on the “Vineland Adaptive Behaviour Scales” tests and has a higher cognitive level then his age. They called today to officially inform me that Johnny “is not severe enough” for their treatment and that they will send me an official letter after they have gone over his file completely.  *high fives* my little boy:)

It was great to hear how they were impressed at how well he was doing integrated in a regular kindergarten classroom with EA support and how social he was being with them for a child diagnosed with Autism. They want him to attend some skill building groups ie play skills, pretend etc and advised me on SLP therapy for his Apraxia of Speech.

Truth be told I had mixed feelings about IBI Therapy for Johnny now because he is learning in other ways and I was leaning towards a multi-faceted approach. As I have to deal with more and more professionals I keep thinking about how frustrating it is for Johnny to sit there and entertain himself while strangers ask Mommy question after question about him as if he doesn’t comprehend. Its no wonder his anxieties begin to build and he’s dumping toys out of bins on the floor and sorting stuff and playing functionally with anything. When I was a kid I was pretty shy and didn’t want attention so I would have hated all of this. After at least an hour of this then the professionals usually want to play with him and wonder why he doesn’t want to…..

Am I disappointed?  Right now for my little boy this is the “right” decision but when he was 2 years old it would have been EVERYTHING for him to help him fight through the Autism and come back to us.  He went from being a baby boy who smiled all the time, giggled and interacted with people yet who loved the cause and effect repetition of his toys and sensory play.  Then to a toddler who did not to play with toys and instead enjoyed shaking drapes to watch the dust float and sit and spit in the corner not wanting to make eye contact with us.  IBI Therapy would have been EVERYTHING then but we were on wait lists just for diagnosis and speech therapy.  At 3 years old we had an “in house” consultation so that we could somehow access some programs to help Johnny while we waited for a diagnosis.  I remember having to pack up my 3 month baby girl and take her to specialized drop in centres where staff were trained in Autism and watch and learn and be nervous about how Johnny would react to all of this and juggle a newborn baby.  At one point my worst fear happened as I turned to listen to a public health nurse talk to me about what she would recommend regarding Johnny and then have to scramble over to my daughter’s stroller to stop a little boy from trying to shake her awake.  I kept asking myself in those days…”why me…why us?” By 3-1/2 we finally got our diagnosis and speech therapy but we were left scrambling to get Johnny into a specialized pre-school where they could do early intervention and take many parent training programs to learn how to best help Johnny at home.  I remember feeling the panic deep inside feeling like I was not doing enough for him.

crazy thing

Now Johnny is about to turn 5 in 2 months and is making a lot of break throughs.  I am happy and proud of his progress but disappointed in a system that makes promises about early childhood intervention but has children on wait lists for the therapy and programs that can help him.  I couldn’t wait to leave the Psychologists  and  give  Johnny a big hug and and a *high five*.  YOU are doing it sweetie despite everything 🙂

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6 Comments Add yours

  1. I’m so sorry to hear about all of your frustrations. I know that we were blessed to get Philip into his preschool when we did. It never occurred to me that there might be wait lists until the staff told us that they happened to have an opening just when we applied. That’s when I realized how lucky we were.
    High fives to Johnny on all his progress and to you, too, for doing what he needed when the system failed you both.

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    1. Cyn says:

      *hugs* thanks:) You gotta do what you gotta do right? Wait lists are the bane of my existence:( The preschool my son was at last year we “accidentally” got in half-way through the year even though they have a massive wait-list. I had heard about them through word of mouth but figured since their list was so long I’d visit them for their specialized kindergarten. Their Principal had visited the drop-in play centre I was taking my son to and really liked what she saw in him and then once the teachers met him when we visited the school…..the next available spot was his. I guess what I’ve found out is be persistent and network like crazy because its through meeting folks that you find out other places etc that you never knew even existed.

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  2. Lisa Burns says:

    Thanks for blogging Cynthia!!!! As I meet more and more people….I hear very similar stories of frustration and “experts” that are so very book smart and yet so lacking in common sense….I have interviewed so many Professionals that are “autism specialists” and find that they really don’t understand the disorder at all….I don’t know about others but when I meet someone that instinctively knows what my son needs….I call them my “autism whisperers” and thank the Lord for their help….Keep blogging and most importantly….keep reaching Master Johnny….you have been given an important task that you never asked for….being an Ambassador for Autism is a difficult role to play and you continue to do an amazing job….with the love of your family and your beautiful personality….especially a smile that lights up the world….you will go far and do us all proud!!!!

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  3. vaughanmom says:

    I am so happy to hear of your son’s progress! I am not familiar with IBI therapy. We are struggling to get McKinlea into ABA therapy. Is that the same thing? I thought the struggle getting the official Autism diagnosis was difficult….sheesh. Now we are finding it even more challenging to get her therapy.

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    1. Cyn says:

      ABA is “Applied Behaviour Analysis” where you track the challenging behaviours over a period of time and apply strategies through repetition to change the behaviour. ABA is used to help teach life skills such as washing hands to dressing to how to learn ie match shapes and colours.

      IBI is “Intensive Behaviour Intervention where ABA is uses but intensively 20 – 30 hours a week.

      IBI is super expensive because of the number of hours required with a therapist and then add SLP and OT support as well. $30,000 + a year. For kids that are severe in this province the gov’t offers for 2-3 years to provide a team of therapists but the wait lists are long. Good luck and remember be persistent.

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