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. 

X,

S

 

 

 

 

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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

 

Rigidity and Spectrum Disorders: What Can We Do?

young-man-photoMornings around here have been notoriously difficult with A.’s time awareness and management. He not only requires double time to get himself ready but we need to keep track of where he is in the morning routine and provide continuous prompts. He seems to have little sense of urgency.

 Truthfully, A. has improved these last few years but not so significantly where we can rely on him to get out for the day on his own. He still requires some level of supervision.

 No doubt, if you are having similar issues with your young adult, you’ve employed timers, alarms, lists and the like. Perhaps you’ve had more success with those. A.’s focus and inability to plan too far ahead (for him) has him claiming that he’s either “forgotten” or simply feels he doesn’t want to use them. If we press the issue the reminding once again falls on us.

 We’ve also had tussles about cell phone use where we’re attempting to reach him but he’s decided to turn his phone off or alternatively, not answer.

 The underlying challenge and larger concern, of course, is A.’s rigidity and difficulty to understand that these aforementioned assistive devices–which we all use–can help him on the path to further independence.

 Does he truly want to be more independent in whatever way he defines it? Being on your own is a scary proposition. He may sabotage himself subconsciously. He frequently resists learning opportunities and refuses to acknowledge the merits and logic of a point if it shakes his own rationale. I understand this may be unchanging, static behavior on A.’s part but I won’t give up trying to soften the inflexibility. His therapist concurs and encourages us to slowly push his staunch limits.

 We continue to grab onto various techniques–old and new–as well as employ
therapies and other interventions.

I’m eager to hear your responses. Have you handled a similar situation? Has your loved one’s inflexibility impacted his or her therapeutic work? If so, how?
X,
S

Is My Child’s Independence Compromised?

I’d be willing to bet many parents of adult special needs offspring take deep calming breaths when the topic of future housing arises. Speaking for myself, with no solid resolution in sight, it’s easy to spin into a panic.

Currently, the budget we receive from our state’s department for developmental disabilities is enough to cover A.’s day program only four days a week–not a full five. Originally, our preference was to have A. in an educational residential program where he’d live what he’d learn such as maintaining his own (shared and supervised) apartment and other important skills for daily living.

Budget is determined by the level of service and remediation a client needs. In theory this makes sense. However, apparently a client needs to be much lower functioning in the eyes of the agency to be qualified for such a residential program. Odd. I would have thought since A. has the potential to reach a higher degree of personal independence, he’d be the perfect candidate for skill advancement in a residential setting.

After years of careful planning, anticipating A.’s interventions and programming, I’m completely stumped as to how to pin down his care later on in his life and ours. If there are viable resources, I can’t find them. The closest we’ve come is to put his name down on a waiting list that can be as long as ten years. Hardly a solution.

 

The prospect of my adult child living with us for the foreseeable future and then some is not only disheartening and unsettling but limiting for us as well as him.

On a related note, heath care is a hot topic of late. I’ve become particularly interested to learn how various U.S. states and even other countries manage care particularly as it relates to special needs issues. For instance, many have national health insurance. Perhaps we can find some kernel of possibility for us by mining what works in other places.

 

Readers, I’m eager to hear:

 

Are you happy with your state’s ability to meet the need of your adult child? If so, what type of situations are offered?

 

Do you live in another country? Are you pleased with its health care in general and special needs care in particular?

 
I’m eager to hear people’s thoughts.
 
X,
S

Moving Ahead

I need to do this. Create this blog that is. There are  blogs which focus on parenting special needs adults but I figured I’d add myself among them.

My sweet son (whom I will refer to as A.) will be 23 in a few months. Diagnosed with that ever-present catch-all PDD NOS as a little guy, it became clear an Asperger’s diagnosis fit more accurately.

A. attended a specialized school throughout high school then proceeded to a district life and job skills program for three years. He currently lives at home with us and continues in another skills-for-daily-living program. Not much has changed in terms of him growing skill-wise. I see my expectations and hopes for him must rise ever so slowly. Planning (and worrying with good reason) for his future is an exercise in patience and boy, am I in short supply of that these days.

I’ll work on that.

A.’s rigidity–one hallmark of his diagnosis–is a continuous issue. When it comes to facts on topics he’s interested in, he follows logic thoroughly and is quite the intellectual. He resorts to illogical discussion when he fears his little thought-construct is being challenged.

This isn’t new information. What is new for me though is my son’s emerging adulthood. There’s much that’s clearly different than a typical 23 year old life. A.’s emotional and maturity level will likely continue to fall short of his peers.

Thankfully, A. is able to stay on his own during the day, cook, bake and walk to local places such as the library and pharmacy. I’m uncomfortable having him cross a busy intersection or walk home in the dark. I fear for his vulnerability and his lack of ability in knowing what to do in case of an emergency. We won’t leave him overnight on his own. We still must remind him to pay attention to the life skill of personal hygiene. He disagrees on the frequency of showering. I try to gently steer him past his comfort zone.

I know I’m past mine.

X, S