Fun IEP Fact of the Day

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Just thought I’d share.  Did you know that the term PPT (Planning and Placement Team) only exists in Connecticut?  Yes, that’s right, only in the nutmeg state.  Everywhere else they are known as IEP Teams (Individualized Education Plan) and they are called IEP Team Meetings or IEP Meetings rather than PPTs or PPT Meetings.  So if you are doing a google search and trying to find out the answer to a question about a PPT meeting, you may not find it!  Try a search using IEP instead.

Teaching Social Cues

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* Spoiler Alert *   Did you see last night’s Parenthood?  I loved the moment where Amber finally “gets it” that Max simply cannot tell the difference between a sincere and a false apology through facial expressions and voice – the nonverbal cues.   Her  idea to help him learn the difference by watching YouTube videos of public apologies (Bill Clinton) and parsing out the eye contact, the smile or frown, the tone of voice, etc. was creative, clever and most of all, simple.  It didn’t require a fancy curriculum, or post graduate training.  It didn’t require specialized equipment (note the old Mac they were using!) or expensive training materials.  It required creative thinking, patience and a willingness to take the time necessary to teach the subject matter.   I’ve used this sort of thing many times and I know many parents who have done the same.  You can do it “old school” and create a social story using family photos and handwritten notes, you can go high tech and use your Iphone.  You can rent the Brady Bunch episode where Peter’s voice changes (thank you Netflix!) and explain the maturation process while singing “It’s time to change”.   Sometimes the most important skill that we need to have in working with our loved ones with ASD is creativity.

Speaking of creativity – did you catch the news?  Carol Grey is finally coming back to Connecticut!  Creator of Social Stories™ and comic strip conversations, Carol is a dynamic presenter with lots of information and hands on tools you can use in school, at home, in the community and in the workplace to help teach social skills to our kids and adults with ASD.  Save the date, Saturday, April 28, 2012 for the 22nd Annual Statewide Conference on Autism.  Lots more information on our website.  See you there!

Energy Assistance

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Brrr.  I had to turn on the heat in my car this morning.  Got me to thinking that winter is coming.  With the high cost of heating, whether it is oil, gas, electric or whatever, we get lots of phone calls here at the office from parents looking for assistance with their energy costs.  Unfortunately, ASCONN does not have funding to help parents pay for heat.  There are no special programs for persons on the spectrum.  But, Connecticut DOES have an energy assistance program, although my understanding is that there are fewer dollars this year (so what else is new?).  Go to the Department of Social Services website to find out about the program, what the eligibility requirements are and how to apply.  Applications are being accepted NOW, so make sure you get yours in early, especially if there is less funding than in years past.

If you heat with electricity or gas, the utility company cannot turn off your heat starting November 1 if you apply for a “hardship”.  The rule are complicated and depend upon whether you use gas or electricity and whether yours is a public utility or a municipal utility.  A good resource is located here at the CT Network for Legal Aid website.

The best path is to call your utility NOW before the winter months and get on a payment plan that you can afford.  Remember, though, that a plan only spreads the cost out over a period of time, it does not reduce the cost of your heating bill overall.   Some of the utilities have plans that will also help defray the costs and lower your overall bill.

If you heat with electricity like I do, don’t forget to save money by choosing an electric supplier that may provide your energy at a lower cost than your utility.  You won’t notice any difference in your service or your bill, just lower rates!  You can also get an energy audit (mine was free!) where a certified person will come to your house and check your doors and windows for leaks, provide caulk and weather stripping, retrofit you with energy efficient light bulbs and give you lots of tips on how to save energy.  More information at CL&P or United Illuminating.

 

Getting Help

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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.

 

Parents – Help Improve Special Education in Connecticut

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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.

 

Baader-Meinhof Phenomenon

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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!

 

 

 

Hurricane Irene and the disability community

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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.

May you live in interesting times

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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.

People are reading the blog!

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Check it out, people are reading our blog!  We were posted on a list of 50 blogs you should bookmark for Autism Awareness Month!

Hope is the word of the day

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A copy of my remarks today at our 7th Annual Autism Awareness Day in Hartford.

So, when I was thinking about what to say today, the word that came to mind was -  Hope.   Ok, so it’s written on the ASCONN pen (Help now.  Hope for the future).  Nonetheless, it’s the word that spoke to me about today’s 7th Annual Autism Awareness Month Event.  As I talk to people about coming up to Hartford for the event, I’m often asked “why?” or “what’s the purpose?”   Why do we come together on Autism Awareness Day?  Why not every day.  What makes this day different from all other days?  After all, autism is a 24/7 disorder, it doesn’t just come for one day, or one week or one month and every family member in this room can testify that it doesn’t go away after April . . .

Nevertheless this is an important event.  We come together, parents, families, professionals, persons on the spectrum, legislators, policy makers and others to recognize the work of our advocates and champions in Hartford.  Whether it is passing legislation to make sure that those who work with our children have the appropriate credentials to do so, expanding insurance coverage for autism services, or creating supportive opportunities for our adults on the spectrum to live successful lives within their own communities.  Each of these “pieces of the puzzle” as it were, however seemingly small or large, provide the “help now” that leads to “hope for the future”.

As advocates, it is important to take these moments to look back, to see where we’ve come from, to celebrate our successes and achievements as we take a breath before we get back to the work at hand.  As parents of children with special needs, we need to do this often, as we check back on the progress our kids have made as we move forward into the future.  Without knowing where we have been and how we have gotten to where we are today, we won’t move into tomorrow with clear vision.  Albert Einstein once said “LEARN from yesterday, LIVE for today, HOPE for tomorrow.”  That is what we do today.

I spent some time this weekend looking to find just the right quote about “hope” .  The one that says everything I wanted it to say.

Emily Dickinson said “Hope is the thing with feathers that rests in the soul.”

According to Helen Keller, “nothing can be done without hope and confidence.”

But I also watched sports.  Baseball season began this weekend with great hope for the Red Sox, not so much for my beloved Mets.   No hope for my Yale Bulldogs Hockey team that won’t make it to the frozen four after a great season.  Great hope for the UCONN Huskies (both men and women) to do the double championship AGAIN. So it seems only fitting to end with a quote from basketball great Earvin Magic Johnson -

“All kids need is a little help, a little hope and someone who believes in them.”

On this Autism Awareness Day, I would like to thank all of you here, parents, family members, self advocates, legislative members, policy makers and others for believing in our kids and our families. I would ask you as we face difficult budgetary and policy decisions in these economic times that you continue to believe in our kids.  With your continued support and advocacy we can go far and we can create the world we envision where persons on the autism spectrum have the opportunities that every member of our community deserves – for education, for success, for employment, for friends, for happiness.

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