At Home with Autism

Recorded the week between Christmas and New Years, Jakob has a lot to say about his favorite presents. And even more to say about the new Spiderman movie. Jakob shares something that Mom had no clue he knew. So much power in the silence as he searches for the words to say what he's thinking...

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Chapter 16 of the book I wrote and haven't published, yet. There's so much more of this story to tell but this was what I knew 8 years ago. I knew I lost a friend and I was afraid for myself. That what became of her could become of me.

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He's trying to tell me something. I have no clue. I can't help. But I try. I can't imagine how hard this must be for him. His whole life. All I can do is be curious. And open. And not assume I know what he's trying to say. That's a start anyway...

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I pull out the manuscript of the memoir I wrote 8 years ago. This is Chapter 27. It's a conversation that Jakob and I had about snow and grass that I remember vividly all these years later. Some things remain the same...

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Apraxia. The disconnect between the brain and the body. The brain wants the body to do something and the body does not cooperate. Jakob experiences a good dose of apraxia of speech. Sometimes words come out the way he wants and sometimes they don't come out at all. And sometimes it just takes awhile. In this episode, I didn't edit anything. I left in all the silence. You can hear how the words come...sometimes fast and furious and sometimes I have to wait. The waiting is soooo important. You'll hear why. If I didn't wait for his answers, I wouldn't know what he's thinking. And boy oh boy do I want to know what he's thinking...

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I share a speech I gave a few years ago to a big group of special needs parents and caregivers. It's the speech that made me want to do a Ted Talk. And I still love it today. I talk about BEING instead of DOING and how our loved ones with disabilities can change the world and make it a better place for all of us. And what we can do to help make that happen.

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Jakob wanted to talk about our trip to New York to see his doctor and our hiking adventure in Watkins Glen. He had a lot to say in this episode, love how much he loves this and how hard he's working to say all the things he wants to say.

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Decorations, presents, and church. Attempts to feel 'normal" and letting that go. And always putting the relationship first.

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Changes in schedules and routines can be tough for everyone, but especially for someone on the spectrum. Jakob loves the predictability of his routines. After a lot of hard work over the years, he's become a superstar when it comes to mixing things up if it's absolutely necessary. And it's been necessary the last couple weeks as he helps Grandma get back up on her feet following knee replacement surgery.

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The future is really terrifying for parents of special needs children. What happens when I die? Where will they live? Where will they work? What will they do with their days? Will they have friends and things to do? Will they be healthy? Will the world be kind to them? Well I have some ideas and dreams for Jakob...can I make it happen?

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