For years I had heard about this step in the transition to adulthood and I thought I knew what it meant. But as with many novel things, what we know and what we think we know are not the same. It’s like the difference between driving to a new location and being driven there. When you drive, you are much more aware of the process.
Yesterday was our daughter’s guardianship hearing. As her 18th birthday approaches, we are methodically going down the list of “things to do” and this was a big one. For those who may take this step one day, I offer this insight.
We had been told that we could apply for guardianship on our own or have an attorney help us. Since we had already enlisted legal guidance for setting up a special needs trust and taking care of other estate planning issues (such as wills and advance directives), Read full post »
Last summer I was asked to speak at the annual fundraiser, Unspoken Angel Golf Invitational. At this event an announcement was made that Seattle Children’s was the recipient of a most generous gift and that Children’s would open and manage the new Alyssa Burnett Adult Life Center in Bothell. As a parent of a teen who has but a few years left in the school system, the opening of a center focused on providing lifelong learning was exciting news.
Opened in January of this year, the center with a long name is also affectionately known as “The ABC”, “Alyssa’s Center” and the “Burnett Center”. Last week we had my daughter’s intake meeting there and once again, I found myself feeling very grateful to the people behind this life-changing opportunity.
Today, I share with you the words I had for them last summer. Read full post »
A little life lesson…
So often, some of the greatest lessons we learn in life come in times and places when we are least expecting them. Last week offered one of those moments…
As our monthly movie night at the Burnett Center came to an end, as we turned off ‘The Incredibles’ and vacuumed up popcorn debris, a new friend, who will be participating at the center, asked if he could talk to me about some things he had on his mind.
Curious, I welcomed the conversation as this bright, charming and contemplative young man talked about planning for the future and how the unknown can be overwhelming for people with autism. For him, this was in regards to his life and wondering about girlfriends, marriage, even heaven… and for me, in Read full post »
Your Child’s Trajectory
I am hearing more and more about people wanting to know the trajectory for a child with autism. First, let’s define what that means.
According to Merriam-Webster Online:
Trajectory: A path, progression, or line of development that resembles a physical trajectory (the curved path along which something moves through the air or in space)
For our kids, it means the path of their overall development from the time of diagnosis to adulthood. When I recently asked one of our doctors to help the parents of a patient whose teacher asked for his trajectory, he told me he’d be glad to dust off his crystal ball. With no sure-fire treatment for autism and with such a broad presentation of features, predicting the future is a tricky thing to do. Read full post »
Years ago when I was starting my career in social work, I interviewed for a position in a continuing care center for the elderly. As the director showed me around the wing for those with dementia, she proudly informed me that, “We don’t let our residents have baby dolls or stuffed animals. We are age-appropriate”. “That’s odd”, I thought as I imagined seniors with Cabbage Patch dolls and teddy bears hidden under their beds until staff was gone for the day.
As a parent of a child with significant intellectual disability (ID) and autism spectrum disorder (ASD), I have heard this refrain too. And just as it confused me then, it confuses me now. Let me explain . . . Read full post »