And the Number One Reason They Call It a Trust Is…

meeting imageHave 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. 








Stretching Limits While Maintaining Dignity for Our Adult Special Needs Children

two-people-talking-empty-bubbleOne significant but unsurprising hallmark of ASD (Autism Spectrum Disorder), is a pronounced difficulty with social interaction, skill and judgement. Whereas some may struggle but are socially motivated, my son A. has low interest in making an effort.

I can attribute this to fear, A.’s inability to implement skill or him simply preferring his own company. 

This does not, however, give him a free pass.

A new local social collective for challenged young adults has recently been formed in my neighborhood. The non-profit agency organizing this most recent venture aims to create an inclusive community-center-type place for the attendees four afternoons a week,  three hours each.

The thought is to give these young adults their own space to “hang out,” have fun, interact with others (facilitators are always present) and to have participants see the place as a home away from home. 

I had the chance to view the newly renovated space located in a nearby synagogue. It’s a lovely, large room with vibrant welcoming colors and hip fun furniture with a flat-screen TV and library corner. 

Bracing myself for the response I knew we’d get from A. once we presented community center attendance as an imperative (ours) rather than an option,  I was ready to counter his arguments. As expected, he refused to see this as an opportunity toward further independence–something he claims he really wants–and the benefits involvement can bring. Rigidity lying just below the surface quickly pops up. 

How do we–as parents and caretakers of these young adults–balance our desire to stretch their limits yet keep their dignity and sense of empowerment intact? Indeed, it’s a fine line between what can be construed as “forcing” and wisely pushing a comfort level.

I do not claim to have a one-size-fits-all-answer. Every parent must tailor their answer to their own situation. I do believe, though, we must continuously ask ourselves whether our current care and guidance remain effective.  

As for A., his attendance isn’t negotiable. However he can choose which two days he’d go.  I’ve also established a routine where he must come home with two positive aspects of his experience. They can be as mundane as liking the color of the wall, eating dinner or thinking the sofa was comfortable. I don’t care.  I’m hoping a positive open frame of mind will be cultivated over time. Perhaps knowing I’m going to ask,  A. would take notice and consider more than he might have otherwise. 

In addition to the support and encouragement of his therapist (“You like science and facts A., so get your facts before you make a decision”) A. has oh-so grudgingly accepted the inevitability of the endeavor. 

I expect this new experience will have many bumps for us all. We carefully watch to see if the pluses continue to outweigh the minuses.