December 2 was Kyle's 29th birthday. Neil and I both agreed that this has been the best one yet. It feels really good to be able to say that. There are so many things to appreciate this year.

Birthdays can be especially hard and emotional when you have a child who does not develop like his peers. When Kyle was little it was a reminder of all the ways he was not growing. All the ways he was different. Each birthday was kind of like a marker highlighting that he was falling further and further behind. It wasn't long before I realized "catching up" would not be possible.

The road to acceptance has been long and challenging.

As Kyle grew older, there was sometimes a deep sadness on his birthday. I'm not sure when that sadness finally left for good. Maybe somewhere in his teens. And honestly, I'm not sure if I could articulate how I let that go. I know it was a process that occurred slowly over time. Perhaps being so busy doing everything I could to help him be the best he could be. Appreciating his progress, however slow and different, has been very powerful as well. Shifting the focus from what he can't do to what he is learning to do has been huge. Spotlighting moments of connection and thinking vs major skill acquisition has been a useful perspective too. And of course, the passage of time. Time is such a great healer when you are willing to let go.

We all love our children deeply. One of the best gifts we can give ourselves and our children, especially our children with autism, is to love them "as is". Getting to this point feels so amazingly free.

Phew! This birthday blog has gotten very serious and heavy. On a lighter note....

Kyle showed his enjoyment on his birthday this year more than ever before. Really. He demonstrated a different level of awareness and he visibly enjoyed himself and being with the special people in his life. And of course, he loved the drinks and food. He doesn't get to splurge as often as he used to so it was an extra special treat.

We spent 90 minutes with the IPad in the evening. 90 minutes!! Kyle was so focused (I think the glasses are helping) and interested. We watched YouTube music videos, including his sister (Leah Nobel), played the piano, posted a facebook status, and bought and sampled some new "just for fun" apps. This is huge huge growth for Kyle.

AND, we have just passed the 8 month mark of NO anxiety cycles. Whoo Hoo!! That's the best gift of all! Grateful. Very Very Grateful.

Blog-a-thon Day 30

I've come to the end of my self-imposed blog-a-thon challenge. 30 blog posts in 30 days. Except it turned out to be 30 blog posts in 32 days. Not bad. Not bad at all. I will still be blogging, just not daily. I have enjoyed hearing from so many readers. Thank you for your comments and encouragement.

It's been a hectic day and now for some quiet time. Kyle is at  a private church rock concert with Tammy. On Thursdays, he watches a rehearsal for the young folks service at Scottsdale Bible Church. They have always welcomed him with loving arms even though we are not members of the church. No one ever asked. He gets to sing as loud as he wants to the music and dance around as much as he wants too. It's just Kyle and Tammy and the band and the sound engineers in a big dark room with wild colorful lights and loud music. It's one place where Kyle can really let loose with no judgments and little restrictions. Tammy enjoys watching him enjoy. And boy, does he enjoy.

I've been thinking a lot about the topic in yoga yesterday. Masks. The masks we wear. My teacher, Sally Jo,  started off by talking about Ido's new book which she had seen me post on facebook. Ido is a nonverbal young man with autism who communicates by typing. There is so much more on the inside of Ido than what  appears on the outside. He stims, stares and moves oddly on the outisde, but on the inside he has a fully functioning mind with ideas, feelings, knowledge, awareness, and abilities.

Ido's outside is kind of like a mask. We see the mask and assume we know the person. But we don't. We just know the mask: what the person looks like on the outside. And in the case of Ido, and also my son Kyle, that outside mask differs from the inside. It differs a lot with Ido. It differs with Kyle too. I may never really know how much.

Sally Jo pointed out how we all wear masks. In yoga, she wears the yoga teacher mask but she is also a mom,  actress, singer, and sometimes raunchy performer. We think we know her. But do we?

I wear the mask of Kyle's mom. But sometimes I wear the mask of author/writer. I also wear the compassionate friend mask. And the mom to two amazing daughters mask. And supportive loving wife mask. I have a political mask too. I don't wear it very much but it is there and people are often surprised by it. That's because we tend to put people in boxes and make assumptions. I'm not saying that's a bad thing. It's a human thing. It's how we try to make sense of our world. Different masks for different situations.

But it's good to be aware that it's something we do. And that these are masks. And there are many masks that make up a person. And we can be wrong about a person based on a mask we see.  Sometimes, it's good to attempt to see beyond the layers and try to see the person behind the mask a little better. That's what I will keep trying for with Kyle. There might be a few surprises there.

Quotacious:

"I decided a few years ago that experts had made a lot of mistakes that everyone just accepted as gospel. Not to offend anyone, but how does everyone know for sure? Hard to know absolutely if the people you are dealing with are silent and can't write or gesture."

~~Ido, Vista del Mar Autism Conference

Read the full blog post on:  http://idoinautismland.blogspot.com/

Blog-a-thon Day 29

I'm looking forward to reading a new book which has just been released: Ido in Autismland: Climbing Out of Autism's Silent Prison. I have posted Ido's writing on this blog before. I must admit to an internal cringe at the word "prison" because I don't like to see autism that way.  I'm very curious to read more of Ido's perspective.

I admire Ido for how he continues to work through the obstacles he lives with. And putting his innermost thoughts and feelings into a book is fantastic. I will support his (and his mom's) endeavor by purchasing a few copies. We authors need to stick together :-). Go Ido!!

Here's some more information about the book.

Ido in Autismland opens a window into non-verbal autism through dozens of short, autobiographical essays each offering new insights into autism symptoms, effective and ineffective treatments and the inner emotional life of a severely autistic boy. In his pithy essays, author Ido Kedar, a brilliant sixteen year old with autism, challenges what he believes are misconceptions in many theories that dominate autism treatment today while he simultaneously chronicles his personal growth in his struggles to overcome his limitations.

Ido spent the first half of his life locked internally, in silence, trapped in a remedial educational system that presumed he lacked the most basic comprehension, and unable to show the world that he understood everything. But at the age of seven, Ido was finally able to show that he had an intact mind and could understand. This led to the quest to find a system of communication that he could use despite his impaired motor control. Through the use of a letter board, and now an iPad, Ido has triumphed communicatively, enabling him to flourish in a regular high school in all general education classes.

But Ido has a larger goal. He does not want to be seen as an isolated autistic exception with miraculously advanced cognitive and communication abilities. He wants people to see that thousands of other severely autistic individuals have the same capacity, but remain trapped and locked-in, as he was, unable to show their true capacities. These individuals desperately need new theories and new methods to help them break free too. Of importance to neuro-researchers, educators, psychologists, doctors, parents, friends, family and people with autism, Ido in Autismland will change our collective understanding of severe autism.

PRAISE FOR Ido in Autismland

"There are doubtless many Idos in this world, unable to speak, yet possessing good intellectual ability and, most certainly, a rich emotional life. And yet, precisely because they cannot communicate, nonverbal individuals with autism are nearly always consigned to the junk heap of mental deficiency, branded as incapable of understanding language or even having feelings... We need to help change things for this terribly neglected group... Reading Ido's book is a good beginning." -

~~Portia Iversen, Co-founder, Cure Autism Now and the Autism Genetic Resource Exchange Gene Bank. Author of Strange Son

"Ido is a brilliant communicator. His words bring us inside the world of autism. His gift of writing enlightens, inspires, educates. Every person who loves or works with someone with autism - educator, therapist, karent, grandparent, neighbor - should read Ido in Autismland." -

~~Elaine Hall, Author of Now I See the Moon, co-author of Seven Keys to Unlock Autism. Featured in Autism: The Musical

"Ido's book touches any heart, not only because it is well written, but because it reveals a mind that has learned how to speak to the world through spelling every word on a letter board and keyboard. His book is indeed a great gift to the world. Thank you, Ido." -

~~Soma Mukhopadhyay, Executive Director of Education, HALO, Author of Understanding Autism through Rapid Prompting Method