Thursday, May 26, 2011

autism and sick kids hospital don't mix.

This past week has been a doozy. It takes a lot to knock me back on my heels, but congratulations Autism! You seem to know how to push me around. I can typically hold it together when things get stressful, but for some reason the combination of ups and downs this past week really threw me. It all started last Wednesday with Max's annual kidney checkup at Sick Kids Hospital in Toronto.

Before I jump all over Sick Kids and say that they really have no idea what the heck they are doing when it comes to children with Autism, I want to clarify that Max has had two successful surgeries there and is only being monitored at this point. His surgeries were both pre-diagnosis and he was much easier to manage as a baby and toddler. But back to Sick Kids sucking at dealing with children with Autism, because they really do. Every time we go there it is a horrible and stressful experience. Last week was no exception.

Max has a hard time waiting in lines. He typically throws himself on the floor and screams, which he did at Sick Kids while I attempted to register him for the Urology Clinic. The admin staff looked at me funny and told me I shouldn't let him lay on the floor because of the germs. I informed them that Max has Autism and proceeded to straddle him and hold him in place with my legs so that I could registering. The waiting room was packed so I asked if there was any way we could wait in one of the five empty exam rooms. Nope. They actually told me I should just walk down the hall and they would call me when it was his turn. They literally told me to take a hike! Wow!!

It only got worse from there. Max screamed through his ultrasound and refused to do the flow rate test. The only saving grace was that the nurse (Sandy) who was attempting to do the flow rate test was very patient and let us stay in the room while we waited for Max's urologist to tell us what the score was. He refused to pee for her, so she had to take me at my word that Max pees like a champ. She then informed me that every department has someone assigned to it that can provide support to children with special needs as long as we call ahead. This made me shake my head because a) how the heck am I supposed to know that and why is this the first time I've heard about this option? b) they make the appointment and Max's file says up front that he has Autism and all of his tests must be booked on the same day so maybe they could have booked this person on our behalf? c) it's a little late now to be telling me this, dontcha think?

What pisses me off the most is not that I had to wrestle with Max to get him through the exams and appointments, it is the sheer cluelessness of the Sick Kids staff on how to deal with children with Autism. Max cannot possibly be the only Sick Kids patient with Autism. I've asked around and it isn't just the Urology department that has no clue. This is a world class hospital, one would think they would do better on this front?

So, Sick Kids Hospital, if you would like to hire me as a parent consultant who can help you put together a plan that will help children and families dealing with Autism, drop me a line. You can do better and should do better. It wouldn't take much, really. A good place to start is some empathy from your admin staff and a separate area to wait, and this would cost nothing. It's time to live up to your reputation for all of your patients - and that includes the ones with Autism.

3 comments:

  1. Caroline Yull11:50 AM

    Kat, I agree with all of what you have said about Sick Kids' - it is unconscionable that they make no or almost no accommodations for children who have autism. BUT: It does absolutley no good (other than ventillation) to rant about it here and not to them, on paper, in an envelope, with a stamp. Every hospital has someone in charge. You are a writer. (that's a compliment) So you need to write all of what is wrong (and whatever is right) with how they respond to Max and other children who have autism, and whatever practical recommendations that you have to remedy those, and then send that letter to them. In your letter, tell them that you expect a response, and that it should arrive to you within X time, and how you wish to be contacted (always ask for some kind of written format) Make your offer to assist in designing solutions to them directly - again, nothing you wrote here is helping you get to a solution. It's healthy and necessary to rant and get it all out, but if you want change, unfortunately you have to BE that change, to a large extent. XOXO <3

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  2. Anonymous3:55 PM

    I agree. You should find out the name of the hospital administrator in charge of the clinic or E.ZR. and address it to him/her.

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  3. Anonymous3:57 PM

    The Patient Representative Service is now Child and Family Relations.

    On May 30, SickKids will launch the new Child and Family Relations service, located in the new Centre for Innovation and Excellence in Family Care portfolio.

    Child and Family Relations is based on a model and process developed through consultation with staff, families, patients and a scan of practices in other hospitals and was designed to be timely, consistent and transparent. There are clear guidelines on how SickKids will deal with concerns.

    The Child and Family Relations team will become an integral group at SickKids, with a mandate to support and guide staff as well as patients and families to build positive care experiences for everyone.

    Staff are encouraged to contact Child and Family Relations with any questions or concerns at:

    Room M223, Main Floor
    Black Family Wing
    Tel: 416-813-6181
    Fax: 416-813-8282
    email: cfr.experience@sickkids.ca

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