A Three Hour Tour…

August 15, 2012

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By Lisa Ackerman

For years, there have been many comparisons between parenting a child with special needs or autism and the journey gone through inplanning a trip to Europe. Since I am a parent and this blog is focused on autism that is where this story will continue.

The journey starts with you and your travel partner spending months planning for your trip to Paris. You spend hours selecting the right travel arrangements, reading up on the sights and history for your selected destination, you pack, you buy French berets, baguettes, practice your French, and when the special day finally arrives, you lock up the house and leave. But instead of landing in Paris you land in Holland, unprepared. What happened to Paris?

What the writers want you to think is that having a child with autism is really not that far off the map from a child that is typical. It’s just a DIFFERENT journey.

The makers of this story have it so wrong – at least when it comes to autism. Holland is still in Europe. Autism is nowhere near Europe! This story makes a few folks upset including myself. But forget me.  It is not about me and my feelings. How about how my son feels? His autism diagnosis followed a serious regression, loss of skills and health issues is a much bigger issue than how I feel.

This journey is a far cry from a European trip. It somehow feelslike that 1960’s show: Gilligan’s Island. You had planned for a three hour boat tour, but instead end up stranded on a desert island with little resources.  And what’s worse, you have a kid who is in dire need of help.

There is a lot of confusion between being stranded and needing help. But parents of children diagnosed with autism are very resourceful.  While stranded in this desert island, autism parents can begin making a radio for help out of sand, coconuts and left over bits from the crashed boat. But on this desert island there is no beautiful Ginger or Mary Ann and the rich Mr. Howell and his wife Lovey with money to help. You have no money after autism. It is simply gone.  You and your direct family are on an island alone with little direction, help and certainly without all the supplies to meet your child’s needs.

Many families living with autism fight back despite the impossible odds. With much perseverance, small steps and progress can be made. For many families on this seemingly deserted island, progress is made on a regular basis.  Provided the right help, children with autism can greatly improve.

On our desert island, we found signs of life outside our own family. Others who were living with autism were stranded too. We learned together for our kids.  We were not alone on this journey, and no French was spoken!

I know this story comparing Gilligan’s Island to autism can seem a little ridiculous, but for my family – it was truly felt this way. Reason why TACA is so important to thousands of families like mine: Without community you can feel stranded. Without hope you feel lost and scared. And without tools, you cannot help your child take important steps to improve health and learning. For many families, this is the rescue boat providing hope and best tools to get you from being stranded into a better place.

Autism is hardly like Europe or a deserted island. It's a huge challenge worth fighting and to gain ground for our children.   And TACA will be here when you send up that smoke signal for help.

Parent Resources:

1)      Find a TACA Chapters http://tacanow.org/local-chapters/ . If there isn’t one by you – check out TACA live chat for support. http://tacanow.org/about-taca/real-help-now-live-chat/ and TACA Parent mentors http://tacanow.org/about-taca/parent-mentor-program/

2)      TACA Family Scholarships http://tacanow.org/about-taca/family-scholarship-program/

3)      Who pays for what http://tacanow.org/family-resources/who-pays-for-what-a-guide/

4)      Biomedical links

  1. a.      Biomedical on a budget http://tacanow.org/family-resources/biomedical-treatment-on-a-budget/
  2. b.      What is Biomedical treatment for autism http://tacanowblog.com/2011/10/13/biomedical-treatments-and-autism/

5)       TACA Autism Journey Blueprints http://tacanow.org/family-resources/autism-journey-blueprints-guide/

6)      Staying in the game http://tacanowblog.com/2011/11/03/staying-in-the-game/