Bittersweet

Registering my girl today for her final year in high school was bittersweet. Bittersweet in that in came so fast.  Bittersweet in that we are soon entering into an entirely different space in the world of disability.  Bittersweet in that we were surrounded by teenagers excited about being a senior and their life ahead.

Disability has been even more so up close and person this summer as I have personally ventured away from being simply the mom/advocate to becoming case manager. Case manager in selecting a provider for summer community access.  Case manager in appealing social security administration. Case manager in applying for guardianship and long-term health care.

It is as if during one meeting you need to elevate your child’s skills to the most functional of days, while the very next meeting you are asked to go to ‘the worst day’ scenario.  Constantly being tugged from one end of the spectrum (pun intended) to the other.  All the while, face to face with the long-term outlook of an adult child with disability.

The long-term outlook that requires a parent to become not just the soft, sweet place of a parent, but instead an advocate that goes far beyond an IEP goal.  A life-long advocate.  Forever.

Bittersweet.

What began not so long ago as a kindergartener with a ton of fear, ends with a young lady able to cope with the fear thanks to meds and maturity.  The excitement for the kindergartener is starkly compared to the uncertainty of the life ahead.

Indeed bittersweet.

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One thought on “Bittersweet

  1. Well said…I am reaching that stage myself. Teenagers with disabilities are not as much fun as when they were younger…and, as parents, our roles change dramatically. No longer will we have an IEP to follow, but only our own instincts. It is a strange feeling!

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