So I took a poll the other day (very unscientific – I asked a question on our Facebook page) asking my autism friends what was the most useful thing someone told you when your child was first diagnosed.  The overwhelming response was to connect with other parents.   Interestingly enough, that is the first piece of advice I give to any parent, whether their child is newly diagnosed or they’ve been at this for a while now.   I remember a mom of a young kid (I think about 4 years old) had called me and I invited her to come along to our support group that afternoon and meet some other moms.  She clearly was having a tough day.   She arrived and told us, through her tears, how she had just had a difficult conversation with her mother who refused to believe that her son was anything other than a “picky eater” and how it was HER fault that he wouldn’t eat any more than 5 foods.   Just at that moment, one of the other moms perks up and says “FIVE?  He eats FIVE foods?  We only eat 3 at my house . . . “  The look on our new mom’s face was priceless.  She had found her peeps!   What a gift, to be with others who have “been there, done that” and truly understand what it is you are dealing with.   In my support group, we talk, we vent, we cry, we laugh, we share resources and information (sometimes we even go and do karaoke and drink wine).  We also cook meals for members who are sick or have just given birth to a new baby, we attend PPT meetings, we arrange play dates, we use each other as our emergency contact for school (who else will not be fazed by any “behaviors” your child may have) we support each other.   So, to quote another mom “. . . none of the advice any of the “expert professionals” gave us was worth a thing. Didn’t get any good advice until I started talking with other moms.”   Find a local support group here.

Can’t find one?  Got a group who wants to start one?   Drop us an e-mail and we can help you get started.  You’ll be off and running (or supporting!) in no time.

First an earthquake, then a hurricane?  What’s next? Pestilence? Plague? Frogs?    For most of us, what’s next is something even more terrifying – the first day of school!  A new teacher, a new classroom, perhaps even a new building – talk about anxiety, not just for our kids on the spectrum, but also for us parents.  A whole new team.  Will they have even read the IEP that we put together last year?  Does it still make sense after the summer?  What new skills did our kids learn, and which did they lose?  What new areas for improvement did we see as we spent unstructured time together over the summer vacation?  Maybe our kids are off transitioning to the adult world, whether that is higher education, vocational training, transition programming, a job.    You have questions, you need resources, ASCONN has answers.  Join a support group – many are picking up again after a summer hiatus, check out our listings here and please call before you attend.   Sign up for a parent advocacy training program to help you learn more about the IEP process and effective techniques for advocacy.   Schedule an Autism 101 Workshop for the new classroom, girl or boy scout troop, after school program or other community provider.  Mostly – bookmark this site!  We have lots of plans for the fall and we hope to be posting more and starting the conversation.  So join in!  Got something you want more information about?  Send us an e-mail or comment and we will do our best to get some answers or at least point you in the right direction.  Have some information to share?  Send us a listing for our community announcements section, calendar of events or write up a blog post about some great achievement for YOUR child, a wonderful teacher or therapist or program, a great book or other resource you’ve found.   Let the sharing begin.

So glad to see that people are talking about this very important subject. We here at ASCONN have been helping our families keep their loved ones safe through our mini-grant program. Since 2005 we have helped over 100 families right here in Connecticut build fences, install alarms and guards, purchase “child find” systems and many other items. Applications for the 2011 “Help Now” mini-grant program are available on our website.

Help us continue to help our families by making a donation to ASCONN to support this much needed program!

Dangerous Wandering a Lesser Known Side of Autism – US News and World Report.

I found this great piece on Slate.com creating two new basketball brackets for the tournament. One was team colors, the other, mascots. (My pick?  The Akron Zips.  Zippy the Kangaroo all the way.) What an interesting way to view the brackets!

Think about it. In order to actually win the office pool you have to pick a team to go to the final four that the rest of the pool has not chosen. If everyone picks the same final four teams, then no one person can win the pool. You have to go against the group consensus. You have to take a chance on a long shot. You may go down in flames, but it is your only chance of winning. We call this “out of the box” thinking.

In order to do that, you have to think about the bracket differently than everyone else.

That’s what our loved ones with autism do every day.

One of the most interesting and frustrating issues when working with people with autism is often the fact that they often don’t get the group consensus. What is important to the rest of us neurotypicals may just not be the important detail to our kid. Whether it is a focus on the “wrong” detail (like the fact that the book store downtown is the one with the blue door, as opposed to the store that sells books) or the inability to focus on the teacher’s voice when there is a fan spinning in the room, as parents and teachers we are often frustrated by what seems to us to be an inability to focus on the important.

Don’t get me wrong, focusing on the teacher’s voice vs the fan is probably useful. But you know, sometimes looking at the world through a slightly different prism is also useful. It is this different viewpoint that enables someone like Temple Grandin to understand cattle and design better cattle handling systems. It is this different viewpoint that discovers new cures for diseases, solves math problems, creates better video games and computer programs, paints better pictures, tells stories, expresses itself in music. It is this viewpoint that picks the long shot and wins the pool.

So, let’s remember that while it is important to help our kids navigate our world successfully, sometimes we should try to enter their world. We should try to respect their way of thinking and not always dismiss a thought process that focuses on the “unimportant”. Let’s not be rigid ourselves. Go Zips!

*SPOILER ALERT* – If you haven’t watched LAST week’s Parenthood on TV, don’t read on!

The thing that struck me the most about this episode (where Max’s wonderful behavioral aide leaves the family abruptly) was the look on Kristina’s (the mom) face when she heard the news. I’ve seen that look many times.  That “deer in the headlights” look that a parent gets when there is going to be a change in the program for their child,  most especially when things are going well. One of the most difficult things we have to face as parents is that there is no one right answer for our kids and for their autism.  There is no one right program, one right solution, one right intervention, no “magic pill”.  And most certainly, there is no one right person who alone, like Annie Sullivan, will miraculously help our child.

In the early days of living with autism, it is natural to want to hold on tight to the intervention that is working right now, to the person who seems to be able to get your unruly child to sit, to pay attention, to learn, to be “less autistic”.  Oh, if it were only that easy.  As any parent who has been at the “autism game” for any length of time will tell you, things change. People come and go. Time passes and you must move from the home based birth to three program to preschool, to elementary school, middle school, high school and (gulp) adulthood. Your child changes and their needs and how their autism presents itself changes. What works today may not work tomorrow. The great behavioral aide may change jobs, get married, have a child, go back to school. It is so tempting to place all of our hopes and dreams on the abilities of one person.  But it takes a village. It truly does. It takes a team of people, family and professionals working together, to help a child with autism succeed in our neurotypical world.  We need to teach our kids about transition and we ourselves must learn to embrace change.  That para professional who is magical with your child in second grade may be reassigned and guess what?  The next para professional meets your child fresh, sees them with new eyes, different expectations and may even prove to be as good (or better than) the one that you are so sad to see leave. Change is inevitable. Railing against it is useless. We must learn to embrace it, to learn from what works (and what doesn’t!) so that we can be prepared for the changes that life must bring to all of us. Whether we want them or not.

Today, I want you to read this post by an autism-mom blogger I’ve been reading for years.  Find it here.  As she writes:

“I hope that as you read this post, you don’t see yourself in its words.  But if you do – IF YOU DO – listen to me:  you are not experiencing these things because you are weak or because you’re a bad parent or because you’re just not trying hard enough.  You are experiencing these things because you are a reasonable person who has been living with unreasonable demands without reasonable support for an unreasonable length of time.”

Follow this mom’s advice.  Seek help, comfort and support.  Call us, find a local support group, talk to other moms.  YOU ARE NOT ALONE.

Remember “it takes a village”.  To raise a child.  AND to support the family living with autism.