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05/04/2009
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Independence Day? Not For Everyone...

Holidays can be the most stressful times for families with an autistic member (and vacations are no vacation either). Today I noticed a father dragging his autistic son down the street with him. The boy must have been eleven or twelve years old and he was trying to cover his head with his t-shirt by pulling it up over his head. The dad kept trying to guide his electively blind son along the sidewalk while onlookers stared at them. Here is the dilemma: autistic kids get isolated and left out and yet they can be overwhelmed when they are included. They can also exhaust and overwhelm their parents when they are included in holiday outings.

​Bringing Dov to a 4th of July celebration is something I view with trepidation. Dov's starting to communicate at age nine was the greatest miracle of our lives and yet clocking in at 5-8 minutes to type a sentence means the person helping Dov stay on task get exhausted and becomes isolated too.

​Most families with an autistic child do not have any help on holidays and they have the heart-rending dilemma of choosing between taking the whole family out which entails the intense effort of including the sometimes hard to manage, overwhelmed child with autism (and one parent will not be able to talk with people or interact at the holiday gathering), or leaving the autistic child at home with one parent (not an option because you don't want them to feel left out), or what most often happens: everyone stays home.

​So there are compromises: take two cars and one parent will leave early to take Dov home when he is getting tired or hyper or the struggle to keep it all together greatly outweighs any fun being had. These compromises are essential because it is so important not to allow Dov's universe to become even more limited than it already is by his autism.

​Independence Day has yet to come for Dov and millions of others like him and yet Dov's ability to communicate, (something that is still a rarity among nonverbal people with autism), no matter how difficult or how limited it is, makes all the difference in the world for him and for us. He is a very brave and patient young man, he never stops trying to communicate, never stops wanting to be a part of our world and as long as he's game we will be too.




Posted on 07/04/2009 at 00:45:20



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