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.

Every 5 years, the US Department of Education, Office of Special Education Programs (OSEP) conducts a monitoring visit called a Continuous Improvement Visit.   During the visit, OSEP assesses and/or verifies that key requirements of IDEA (the Individuals with Disabilities Education Act) are being followed and implemented.    As part of the process, OSEP is looking for input from stakeholders.  PARENTS ARE KEY STAKEHOLDERS in this process.   A survey has been created to enable parents to provide input about their experiences.  So here is your chance to make your voice heard.  The survey is brief and your answers are confidential.  Follow the links below, of if you prefer, call CPAC (CT Parent Advocacy Center) at 800-445-2722 and answer the questions over the telephone.

Survey for parents with children under the age of 3.

Survey for parents with children between the ages of 3-21.

You know that phenomenon where you happen upon some piece of information and soon afterwards you encounter it again?  It’s called Baader-Meinhof and I had it again today.   I was reading a really interesting article in USA Today on the use of IPads in special education and lo and behold, what comes across my desk this morning?  Information on an “APP-Tastic” conference right here in Mystic about how the IPad and apps can help special needs students, particularly those on the spectrum.  Presented by Lighthouse  Voc-Ed Center and the NEAT Center (New England Assistive Technology), it’s cheap, it’s local and it sounds really useful for parents and school staff.    I know many families have used this technology for their kids.  Do you have a favorite app or way to use your technology to help your kid?  Let’s share!

The Office of Protection and Advocacy is seeking information from persons with disabilities and their families about how they were impacted by the storm.  As we start the reviewing process to determine how our state and local authorities responded to the storm, we need to make sure that the needs of our families are included in the discussion.  I heard from many families about how disoriented their kids were with no power and how difficult it was to help a child with autism cope with the changes and uncertainties.   Let your voice be heard.  Call 860-297-4310 or click here for an online survey.

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.