Thursday, January 10, 2008

One Dad's Opinion...

As you may have gathered by some of the comments to my last entry, I promised that I would post something here about the presentation at USD.

You see, the three of us who participated are not exactly seasoned veterans of the speaking circuit. We are people with a message who were provided a wonderful and unusual opportunity to offer that message in an unfamiliar medium. We coordinated our presentation amidst the separation of 2 continents, 3 countries, 4 states, about 9 or 10 people, 2 powerpoints, 4 videos (2 specially made for this purpose) - all via email and some brief conversations.

One error we made in our approach was the time needed to present. I know I had the feeling, and I think Bev and Do'C did also, that we each personally were going to struggle to fill the time allotted to us and thankgoodnesstheothertwoweretheresotheycouldpickuptheslack! But it turned out that we all had plenty to say, that the attendees had lots of questions for us, and that after about 115 minutes of what was supposed to me a 90 minute presentation, we had to stop. I had not yet done my part, the topic of which was to be how the Autism Hub can help to develop a positive parenting approach. So, in keeping with the spirit of the presentation, I explained that I would post my portion of the presentation to my blog so that interested attendees could visit the Autism Hub with the intention of reading it there.

So ... here is my part of the presentation, condensed down from speaking version to written version.

  • I’d like to begin by showing you another video:
  • Imagine that you are a parent who has just recently received an autism diagnosis for your child. Some of you don’t have to imagine it – you know exactly how it feels. And I could describe to you how it felt for my wife and I when our son was diagnosed back in January of 2004.
  • I think one of the most significant memories I had of that time was a feeling of not knowing where to turn. Immediately following the grave pronouncement of our son’s diagnosis, they sent us home with a pamphlet of general autism information and a thin packet listing local service providers. That’s it. “Ummm … he’s autistic, now have a nice day!” And it seems to me in talking to other parents that many of us have this same feeling. Here we are, in the initial stage of our entry into the world of special needs, and not really having any good idea where to turn for guidance and support.
  • Now imagine that you jumped on the computer during those early days post-diagnosis and came across the Autism Hub. You clicked on the video I just played. Yes, this video was just posted for the first time last week. Unlike some of the other videos, it was not specially created for today’s presentation. This is just exactly the type of thing you find on the Hub. The creator of the video, by the way, is right here – he is Dad of Cameron from Autism Street.
  • How would you feel as you saw this? (To self: Really ask the audience here- How would you feel?) I know how I felt upon my early exposure – I felt like I had found the right place for me. Here were thoughtful discussions about how to ensure a good world for our kids. Here were powerful scientific minds who had already spent thousands of hours sifting through available research and were eager to discuss their findings. And best of all, here were autistic adults and those who care about them – adults with highly variable presentation of autistic characteristics– discussing all kinds of things ranging from advocacy to services to bullying. Important things that are relevant to every autistic person’s life.
  • What’s more, by reading these blogs and interacting with the authors of them, I came to realize that autism was not just the quiet little boy in my own home. The autism community is big!!! and many adults had been much like my boy during their youth and were now engaging me in intelligent, lucid debates about a huge range of topics. Your flyer contains a quote from Autism Diva’s site – “Autism, Its Not What You Think”. There is an important message included in that simple statement.
  • Consider for a moment the impact of this revelation. This was prior to my son developing speech, he had been diagnosed with classic autism, he was our first child, and we had no tools to even begin to anticipate what he might present like in 5 years, 15 years, 30 years. And here were these people, some of whom were just like my own son, taking their time to educate me on autism. The brochure I was given was wrong, Autism was not what I thought.
  • So I’d like to share with you, briefly, some of the ways in which my exposure to, and participation with, the Autism Hub helped shape our approach to raising our son, who is now 6.
  • The first thing I think that hit home by reading the Hub has to do with how we chose to support Jason. I choose that word carefully – support. You see, the very first stage some parents enter after the autism diagnosis for their kid is what I call the “parent-as-superhero” stage. This is the point where you say to yourself “I’ll do anything … anything! Move anywhere! See the best experts! Spend ourselves into bankruptcy! Anything to save my son!” We certainly reacted this way.
  • But what I realize now is that the goal all along should not have been to “Fix” my son. He is wonderful and perfect under any circumstance. The idea was to learn about and then to provide the proper supports for him just like Martha and Gary have talked about in prior sessions. The realization that a cure-oriented approach was not going to be the one for our family did not in any way result in a lack of effort or attention to providing proper supports. What it did do was to focus our efforts on enjoying his process of development instead of always wishing for something different and looking for gradients of behavior, it allowed our family to spend its time learning together instead of staving off unwanted behaviors, and it caused us to put our son’s self-esteem at the forefront of the goal structure.
  • In our case, the support strategies we settled on included various speech and behavioral therapies, educational supports, a special weekly peer group meeting, and an adaptive horseback riding program. I realize that this sounds like a neatly packaged approach in retrospect. In reality, we bumbled through the implementation like everyone does.
  • I have learned that raising an autistic child is not a race whose outcome is determined in the first few laps. Kids become teens. Teens become young adults. They become adults. Since my oldest son is only 6, the only way I have come to realize this is by communicating regularly with autistic adults and parents of kids who are much older than my own. One great example is a very wise woman who herself has been diagnosed with Asperger’s syndrome. She has raised a wonderful son who has a lot of struggles with autism. He also is a regular competitor in marathons, and his mom posts wonderful photos and his race times to his blog on the Autism Hub. The young man only recently has begun writing the posts himself, which is great to see. You can get on there and comment to him. Tell him he’s a hero, that he’s doing a great job! His mom might answer, saying he is not yet responding ... but he is listening. Its very inspirational, and no matter how difficult some days seem with my son’s struggles, there are always role models like this to look up to and rely on for a positive outlook.
  • Another important thing I’ve learned is … Words Matter. There are plenty of highly charged words in the autism community. Only by spending hours in discussion with both autistic and neurotypical people – all with different views on the subject – can one begin to appreciate the power of words such as disabled, cure, nonverbal, spectrum, low vs. high functioning. There is, for example, the whole debate between use of “autistic person” vs. “person with autism”. I respect both views, and since I have learned the impact of these words I am careful in my use of them. Words shape our view of the world, and as a parent taking the time to understand the meaning of what we say can have a big impact on how we think of and view our family and its goals.
  • Words Matter in other ways, too. It is easy to think that when your 4 year old is not speaking at all, and is not responding to you even when you raise your voice, that he is not hearing you. Big mistake, that one. I have also learned that this problem becomes more pronounced as children turn into teens, then adults. Especially for those adults who do not speak! Not being able to speak is not the same as not having anything to say. Not being able to respond is not the same as not being able to hear what’s being said.
  • Which brings me to my last and probably most important point – positive outlooks and positive outcomes. I was advised by numerous folks when I first began to interact with the Hub bloggers – this is long before I started One Dad’s Opinion – to get over the “Woe-is-me” stage as fast as possible. There’s a whole world out there, a whole life to get to!
  • Having a Positive Outlook means…
    -Focusing on strengths over weaknesses.
    -It means zeroing in on opportunities for fun, for learning, and for interaction that will be meaningful to your child instead of lamenting that you may not be able to easily do things other families are doing.
    -It means adjusting your parental view to accommodate your child’s unique set of circumstances
    -The positive outlook that the parent holds will affect the behaviors of all the professionals and educators who work with the child.
  • Creating a Positive Outcome means…
    -Taking steps to educate yourself and understand about what challenges society will put up in front of your child, then working to address those challenges now and into the future. Have the courage to speak out in defense of your child.
    -Until some sort of medical breakthrough in understand and treating autism occurs, creating a positive outcome DOES NOT mean spending all of your family’s resources, especially time, on experimenting with the latest speculative interventions. It DOES mean providing any and all medical support necessary to ensure your child’s health.
    -Defining the term “Positive Outcome” can perhaps be the strongest influence on your parenting approach. If you strive to have a child that is “fully recovered” from autism, who becomes “indistinguishable from his peers”, then your approach is bound to be entirely different than if you want to teach him or her to be comfortable in their own skin, to be proud of who they are and the differences they bring. To me, a Positive Outcome is one where a child grows up to be secure in their own identity, and where their disability does not stand in the way of their happiness. This is what I wish for my oldest son.
  • I am not going to stand here and say I’ve got all this figured out. Parenting any child is a challenge. Many styles and approaches will be successful. There’s lots of ways to Land that Plane! (Reference Do’C’s video) But I feel like the opportunity to learn from and in turn give back to the wonderful people who are involved with the Autism Hub gave me an edge in settling on a parenting style that will work to Jason’s benefit. Anyway, that’s “One Dad’s Opinion” on how the Autism Hub can help develop a positive approach to parenting an autistic child.
    (Show Autism Diva’s Video here)

    I’d like to thank all of you for taking time out of your busy lives to learn a bit about the Autism Hub. I hope you all find the time to visit regularly and comment and interact as you see fit.
    Thank you.


Alyric said...

This is really great - feeling a bit teary, which says quite a lot:) As a rule, I don't do teary.

I loved the idea of so many folks from so many localities joining together for this presentation. It's one of a kind you know. I'm so proud of you all.

And Steve the message of bumbling around in some sort of order but not nearly as much as it appeared is so right and so funny - well it would have been funny if it wasn't so serious.

Club 166 said...

...You see, the three of us who participated are not exactly seasoned veterans of the speaking circuit. ...

Well, judging by the quality of what you've posted here, it sounds as if all of you did a bang up job!

Congrats to all who presented.


Niksmom said...

Steve, this is marvelous. ANd, though you may not think you are a seasoned speaker, you certainly are a seasoned communicator and that is what counts the most!

I really wish I had been able to attend the conference; it sounds, by all accounts, like it was an incredible experience for all and a huge opportunity for learning and discussion.

This mom's opinion is that you did a really, really great thing. One which will have repercussions for so many people. Thank you for giving of yourself in this way.

mumkeepingsane said...

This is wonderful. I picture the parents of a newly diagnosed child reading this and I too get teary because I know just how important it is for them to hear this message.

Thank you.

Anonymous said...

These parenting posts are amazing to me. Through them you reach out and walk side-by-side with families who have a newly diagnosed child and need a friend. And need to see a little light at the end of a tunnel. And you help them see that little light can grow so very, very bright!
Thanks for all you did to organize this presentation at USD, and thanks for all you do everyday.

Ms. Clark said...

I give it two thumbs up. :-) it's too bad the audience didn't get to hear you say all of this, but I'm glad I got to read it.

isles said...

Awesome, just awesome. You are such an asset to the autistic community!

Steve D said...

These are extremely nice comments, and I really appreciate your taking the time to make them.

Thank you :).

Foresam said...

Chelation can cure lots of kids. Leaving children with damaged brains is wrong.

Chantal said...

Hi Steve,

I’ve been trying to post a comment and somehow it’s not registering. I am doing something wrong. Hopefully I will do it right this time!

It was great meeting you and Bev and Oc'D at the USD conference and learning about the hub. I've been reading some bloggers but did not realize there was a hub. What a great resource and a good place to discuss, find information, share viewpoints.

I enjoyed reading what you posted here and did not have time to say. Your attitude and philosophy is what will make your child grow into a well-adjusted happy to be alive person, not how many hours of whatever kind of therapy.

You have a great way with words:
"I have learned that raising an autistic child is not a race whose outcome is determined in the first few laps."
And you are exactly right. It was not till my son was around 15 yrs old that we finally found a way for him to communicate that worked for him. And this is after years of trying different things that made sense for him, always speaking to him as if he understood ( although most school administrators thought I was delusional) - He is truly becoming his own person now (he just turned 19) and as a parent, what more could I ask for? That he can now communicate what he is thinking and direct his future course in life based on his hopes and dreams (and hopefully with help from people like the folks at USD) is really wonderful for him and for us as a family. I guess the most important message I have for parents is to never give up on finding a way for your child to communicate - and just because your child cannot speak does not mean he cannot understand - and don't let anyone tell you different.

Thanks again Steve for taking the time and effort to speak at USD. Great to hear from all three of you and learn about the Hub.
All the best,

Sharon said...

Nice talk Steve. I really like the section on positive outlook and outcomes. That is very important to convey and you did a great job.

Wish I could have been there too. Pesky ocean and continent getting in the way!

Becca said...

Wait -- you got a PAMPHLET? Man!

Kidding aside, what a great piece this is. I may print it and give it to friends and family to help them understand the whole thing a little bit better. Or a lot better.

It troubles me that other people assume my son doesn't understand/is stupid because he can't (yet) communicate via spoken language much. This has to be one of the most painful aspects of dealing with autism. Yet, it's not about autism per se but about people's perceptions, expectations, narrow thinking about what constitutes "communication" and intelligence and a host of other things.