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: https://youtu.be/vwrbgVrrSSU), 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. 

X,

S

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. 

X,

S