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.

 

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.

Why I love puzzlethon

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As Puzzlethon™ is ASCONN’s major fundraiser for the year, of course, I love it because the money it raises helps ASCONN do the things we do. Mini-grants to families to build fences or buy door locks or window guards to keep children safe; running support groups to help families connect with each other, learn and share; advocating for change in policy and legislation; helping families find the resources they need for their loved ones; and all the programs, services and resources that ASCONN provides to our community.

But the real reason to love Puzzlethon™? It’s stories like Ali’s. Ali is a non-verbal young lady who amazed her parents and teachers with her enthusiasm for Puzzlethon™. Ali’s parents had struggled with her behavior as Ali had a very difficult time in new environments or where things were out of the ordinary. A trip to the market was a challenge most days. But Ali really wanted to come to Puzzlethon™. So her parents brought her there expecting that she might not even make it in the door, or if she did, that her tolerance would only go so far and they would have to leave within minutes of arriving. Surprise, surprise, for more than TWO HOURS, Ali joined in the Puzzlethon™, completing several puzzles in an unfamiliar environment. The look of joy on Ali’s face and her parents’ faces is what Puzzlethon™ means to me.

Come on out on Saturday, March 5 (yes that is THIS Saturday) from 12-4 at sites around the state.  Find the location nearest you on our website. Create a fundraising page for yourself or donate to an existing participant or team. Most of all, come and join in a wonderful event where everyone can have fun. All ages. All abilities.  See you there!

Temple Grandin And The Autistic Brain

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I always find listening to Temple Grandin worthwhile.  I have had the pleasure of chatting with her over dinner a number of times in the last 15 years whenever she has come to speak at our annual conference.  Yesterday, she was on our local NPR station for a whole show devoted to autism.  (Full disclosure – I am an official NPR junkie – that’s THREE presets on the regular radio and TWO on the satellite.).    Here’s the link to the show.

Where We Live: Temple Grandin And The Autistic Brain | yourpublicmedia.org.

John Dankosky, host of “Where We Live” put together a wonderful hour of information and most importantly, hope, about autism.  Temple was her usual upbeat, practical self as she discussed how she “thinks in pictures”, her use of the “squeeze machine” to calm her overly sensitive nervous system and the importance of the autistic way of thinking in our information driven world.  She was followed by a researcher at Yale, Dr. Kevin Pelphrey* who talked about a lot of the brain research that is being done on the autistic brain so that we can learn what the differences are and how to ameliorate those differences that create dysfunction.  The last segment told the stories of some artists with autism whose work hangs in galleries, provides income and also enables them to express their world to us.

Well worth an hour of your time.  Check it out.

*More disclosure:  Dr. Pelphrey lives in my town and is working with me to help pilot a special needs babysitting class at the local park and rec department.

Stories of Hope

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Submit your Story of Hope to blogideas@asconn.org and we may choose to share it on our blog to help inspire others.