always

This week I was reminded that the grief of having a child with a disability is a continuum that no matter how much attention you give yourself to accept, grief will sneak up on you in ways you may have never expected.

On a logical level, I know that of course I will always be my girl’s advocate. In the logical mind, I feel empowered to always be looking for opportunity to work on core challenges of Autism, always looking for places and people who will stretch her ability, always be looking at potential for growth.  Always means always. Then I sit back for a minute and think, yes always.

The logic moves to incredible emotion.  Always.

From classroom and IEP to adult world where it becomes public bus systems, potential employers, providers.  The adult world where IEP goals no longer exist.

What then drives her ‘programming’ as an adult?  If left up to her, she might choose to stay home all day.  She might choose to work but will she understand the concept of earning an income, that is IF she gets a paying job?  Will she find value in being with people at a workplace? Will she want to socialize with others, where will connect with them? How will she get there? Who will support her when she has a meltdown because she isn’t sure what to do next?  Who will she eat lunch with when there isn’t the support system to ensure that she is not alone? Who will she go to when she is treated unfairly at work?  Will she even know she is being treated unfairly? Will she be challenged?  Will someone be looking for opportunities to work on the disability?

This is forever.

There may be people who say that she has time.  She is only 16.  I say to those people, walk a day in my shoes.

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