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:: the things you learn ::

February 22, 2011

By chance two weeks ago I found out that Meadow Lake has a parent’s advocacy group.  The name of the group is PACE (Parents Advocating for Children with Exceptionalities).  My heart honestly skipped a beat – you mean there are others?  Mothers who are cranky and fed up with the inadequate care and gaping holes in the services provided to our children?

Ava has several diagnoses that we have been working through for the past four years: ADHD, Tourrette’s and a provisional (temporary) diagnosis of PDD-NOS (which involves several aspects of sensory processing disorder).  What has been most frustrating on this whole journey has been the waiting….and waiting….and waiting for services, appointments and results.

Kids with Tourette’s benefit from behaviour therapy to help them learn to manage their tics.

There’s no therapy option within four hours for her.

Kids with sensory disorders benefit from regular occupational therapy.

We drove three hours one way for Ava to receive private OT services when there were no services available to us locally.

PACE recognizes the disconnect between saying ‘early intervention’ is important and the province not making it a priority by allocating resources to recruit and retain professionals to conduct these EI services.  To be clear, I greatly appreciate the services we do receive.  The professionals who work with my children are caring, compassionate and , to be honest, overworked individuals.  My frustration does not lie with individual people.  Everyone I have encountered along my journey wants to help my kids as much as I do, it’s just that there aren’t enough of them to meet all the needs of the children who require them.  Being in a rural, northern part of the province, our needs for services are exacerbated by a location that is not appealing to many.

I wish I would have known at the time that this organization was available to me rather than trying to navigate a complex, hierarchical system on my own.  Speaking of navigating the system, the president of PACE helped to create a document for parents titled exactly that.  Wouldn’t that have been great to receive at some point through this diagnostic journey?

To say that I am excited is an understatement.  I cannot believe that this resource has been sitting under my nose for years and I had no idea it was there.  You will be hearing more from me about this advocacy group, you can be certain.  And, for those reading, if you know anyone in the Meadow Lake area who could benefit from PACE, please pass them the message that this amazing resource for parents exists.

One Comment leave one →
  1. Jen B. permalink
    February 23, 2011 11:56 pm

    So fabulous that you found a support organization!

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