Saturday, August 24, 2013

Birthday Party Inclusion

Sometimes even I, Matt’s mother who is passionate about including Matt in all things, find it easier to exclude him than to do the hard work to make a plan for him to participate. Makes me realise that this inclusion thing constantly requires intentional thought and planning – it really doesn’t JUST HAPPEN.

A good friend and neighbour approached me regarding the upcoming birthday of her daughter. The birthday plan was to go ice skating and she wondered if Matt would manage. I thought about Matt’s balance issues and his fear of feeling unstable and thought it best if we give it a skip. A small part of me felt a little bad that I was depriving Matt of attending a birthday party – he does so enjoy parties, and he doesn’t often get invited to parties (probably because other parents of kids make the same assumption about Matt that I was just making). But I reasoned that it would be too difficult, he wouldn’t enjoy it and so the best decision was to not go.

But my friend didn’t leave it at that. A few days later she came up with a plan. Clearly she had been thoughtful and intentional about inclusion. She added other activities to the party celebrations, including a carousel ride, so that Matt and other kids who might not be confident in ice-skating could enjoy the party. (Matt is totally gonna love the carousel)

This morning her daughter hand-delivered the invitation. My heart swelled as I realised how grateful I was that another mom had kept alight the inclusion light, when I had let it grow dim.

Monday, August 5, 2013

Book Review: Raymonds Room - part 2

One of the principles that is a common thread through out Dileo’s book is that it is not about getting a disabled person ready to participate in life – whether it be in a mainstream school, of having a job, or living in their own home – the question should rather be what support could be put in place to allow the disabled person to live life now, and pursue his dreams.

He gives wonderful, real life examples of how beautiful things can be achieved if the disability professionals start with the question: what are the life dreams of this person to whom we are providing a service? And how can we provide supports to make that happen. Thereby moving away from looking at what are the deficits in this disabled person and how can we better train them to “fit in” and “keep up” before we allow them to try out life in the real world.

I love this concept.

I will hold it in my heart to always look to Matt and give him time, space and opportunity to express what his life dreams are. And then to start asking the questions:  how can we work with him to make this happen, and what supports will he need to be able to move in this direction? I want to be led by his voice as far as possible.

I love that the focus is not on “what are the things that Matt can’t do and how can we try make him more normal by training him to someone do all these things”

I love that there is recognition that all of us need support in life, some more than others, but we all need support.

I love that my focus is all about connecting with the creative energy of all those who love Matt and those who engage with Matt professionally and through his school, so that we can find unique, clever, out-of-the-box, imaginative, and life-giving ways of helping Matt achieve his own life goals and dreams.

Isn’t that what all parents want for their children – to help them reach their dreams. I had put that parenting role aside when I came to terms with having a child with global developmental delay, as if some how he wouldn’t be able to have his own dreams. And if he did, he certainly wouldn’t have any capacity to reach them and therefore they were not worth reaching.

Well Dileo has changed that in me, by sharing a vision of what is possible. In his book he tells stories of various people with different types of disabilities who were viewed as people with goals and talents, and were supported to take meaningful steps towards their dreams. I encourage you to read the book to encounter this in a deeper way.
Find out more about Dale Dileo's "Raymond's Room, Ending the Segregation of People with Disabilities" here.
Check out part 1 of my review here.