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. 








Family Dynamics or Dynamic Families? Hero Sibs!

sibimageFamily dynamics, under the best of circumstances can be fraught with various interactive complications and tensions. When even just one family member possesses an extenuating and challenging issue dynamics can recalibrate in an instant. 

This truth is most evident in the relationship between typical and special-needs siblings. Birth order, type of disability, personality and home atmosphere all affect the outcome of a family’s current environment.  Many siblings are likely each other’s most long-term relationship surpassing parents, spouses and friends.  

Sisters and brothers of special needs sibs could have particularly rough terrain to navigate. Or not. The familial environment is either their “normal”never knowing any other alternative or they’ve adapted long ago.  

My Hero Brother (trailer link here:, a critically acclaimed documentary film about a group of brothers and sisters taking their young adult siblings with Down’s Syndrome on a trek up the Himalayas in India,  is currently making the rounds at film festivals, community centers and agencies dedicated to helping those with special needs. According to the My Hero Brother website, MHB…”is an organization dedicated to building stronger bonds between young adults with Down’s Syndrome and their siblings through the reward of adventure travel.”

I had the privilege of viewing MHB recently. The film showed us parts of the group’s demanding journey. I was particularly struck by the closeness and intricate affinity demonstrated by both typical and Down’s siblings.  As was evidenced by not only the film but a panel of eight siblings of various special-needs adults presented prior to the film, the bond is like no other. The unaffected sib many times, feel protective and responsible for their sister or brother. Often, they must prepare themselves–both emotionally and practically–to inevitably be their sib’s future care takers.

A.’s sister, E., is almost three years younger than her brother. She was born into our family at the cusp of his PDD-NOS diagnosis.  E. is excellent at drawing A. into conversation. She pointedly asks him questions she knows he is interested in answering. As many sibs do however, she falls into a periodic routine of giving her brother authoritative directives.

Not surprisingly A. felt increasingly “micromanaged”.

As a younger sib, my daughter has witnessed her brother’s challenges early on. She’s seen us model the way we speak, comfort and care for A. It’s  become second nature for her. Now, however, she must learn to back off and consider how to have an effective yet non-alienating sibling connection.

E. understands that A.’s future requires her involvement. In her young and somewhat naive way she reassures me that she’s got this. As parents, our job is to have procedure and structure in place for that eventuality.

As A’s only sibling, E. will have to learn how to balance her own full, multi-faceted life with the overseeing of her brother’s.  I worry this responsibility will hinder some life-choices she  would otherwise make and she may ultimately have no choice at all. It’s too soon to know.

However, I do know my daughter has accepted the knowledge of her brother’s care with love and grace. May blessings be with them both.