Have you ever noticed that the more cringe-worthy and somber task is the one (or two) which requires our rapt attention? Several years ago we once again found ourselves in a room waiting to speak to the professional-of-the-day. This time our mission was to meet with a special-needs lawyer to discuss necessary wills and trusts. Fun.
Two hours and much discussion later we emerged with a plan. The practical assignment may have been completed (periodic revisions will always be necessary) but the heaviness in my heart lingered. Our comfort—such as it is—hinges on our reliance of appointed family members to not only execute our wishes but care about the welfare of A. and his future.
I have difficulty with the knowledge that my son won’t at some point be under our watchful eye . We’ve laid out our intentions in detailed documents and I need to find peace of mind in that. I trust family members will— with the strength of love and legal docs behind them—step up.
The future is a scary unknown when planning for sensitive child-care situations. Many parents are downright terrified of their loved one’s future care hoping the structure they set forth will be effective and strong enough to take over.
Our responsibility as caregivers and parents continue far beyond our lifespan. But many parents—regardless of age—delay this weighty task. If you have not done so already I strongly encourage (plead?!) you to research and consult a trained professional. As difficult as it might be, please resist any procrastination or fear possibly holding you back.
Our children trust us to have their backs. Let’s trust ourselves to complete and impart a most crucial act of support.
X,
S
What Now: Parenting for Special Needs Young Adults 
I understand that heaviness in your heart. I feel it too. Setting up a special needs trust was a sobering experience for us too.
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