Sunday, August 01, 2010

teen autism: soon it will be again

Sharing a home with teen autism and repeatedly hearing phrases such as “soon it will be again” never ceased to intrigue me. Communication challenged or insight?

Early in July, J & T returned to Massachusetts after almost two years here in Pennsylvania. … Soon it will be again?

Immediate needs of individual caregiving swallowed the idealism of two long term caregivers as mainstays for each other.

Living with teen autism is above all about autism, 24 hours a day, 7 days a week.

States herald programs and services. Reality is a picture painted by funding or lack thereof. Services and programs are as necessary as air to breathing.

One summer in Pennsylvania rippled for months through both their lives. With only half a day, three days a week of summer school special education contrasted with full day, 5 days a week in Massachusetts routine cracked. For Tyler that meant anxiety surged. For Jennifer as a single parent school hours are the ‘the work day’; a loss of the majority of income for even a couple months impacts everything.

More significant is what may or may not be available when Tyler turns 21, only 3 years away.

Less now is not likely to become more later. As a parent you do whatever it takes for your child.

Back when Tyler was diagnosed with autism the prevalence was 1 per 384 children. NIH recently used the prevalence of one in every 91 children.

We are only seeing the tip of the iceberg of autism thrusting up into adult age and the quest for adult services.

As dependent adults what will they do, where will they go?  Can you even imagine how poignant those questions are for a parent?

These are extraordinary parents who have nurtured their younger child time after time beyond what they were told their child would never do.

Parenting a teen as most know it is about nurturing independence. 

Parenting teen autism is about preparing to grow old with autism.

“Soon it will be again.” 

Caregivingly Yours, Patrick Leer 

3 comments:

  1. I know it was a hard decision for J but I know it was the right decision to return to Massachusetts. You got to go where the services are; those services are sooooo very important!

    betty

    ReplyDelete
  2. Betty, yes indeed even caregiver heart needs a helping hand or two or three.

    ReplyDelete
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