Sunday, December 21, 2008

Sharing An Interview

Having been interviewed by a Contributor to a Web site that provides "timely, in-depth, trusted medical information, personalized tools and resources, and connections to a vast community of leading experts and patients for people seeking to manage and improve their health" ... I looked over the completed interview, and considered the possibility that some, of what was shared there, might be of some benefit to Readers of this site. So, with the blessings of the Interviewer, I am posting the complete interview here. I do hope that You, My Dear Reader, will find some idea or thought to be of use to you as an encouragement, consideration, or, perhaps, a provocation to further thought. I have deleted the name of the medical information site as well as that of the individual mentioned in the Interviewer's introduction to the interview. The interview is, otherwise, unedited.

How to Cope
When Your Adult Child has a Physical Disability

I was looking over the questions asked here at [DELETED] and I began to smile as I re-discovered a question from a lady named "[DELETED]." And just by the sweet nature of how she posed her question, there was no doubt in my mind that her moniker was quite accurate. She was worried about her adult son who had been diagnosed with MS. And although the title of her question was: "Can MS affect the ability to match clothing (plaids with stripes) and colors?" the true intent of her question was to be found in reading between the lines.

This was a mom who was worried about her son's disease and how he would manage the potential physical and mental challenges that Multiple Sclerosis could bring. I began to think about this disease from a parent's perspective. No matter how young or old your child is...they are always still your child. How does a parent cope when their child faces the daunting challenge of a physical disability? What is the best way to be of help?

In order to delve more deeply into these questions I have enlisted the help of fellow blogger and self help writer, John Michael. John Michael's extraordinary way of writing stems from having to face his own unique challenges including parenting a son who has cerebral palsy. You may find more of John Michael's insights by visiting his blog authentically entitled, "Just being John Michael."

Based upon your life experience, what comfort would you give to a parent who has an adult child who is facing physical challenges?

To begin with, please know that I do not, in even the most remote way, hold my opinions or ideas up as any kind of standard of measure or (God forbid) sort of rule to go by. They are, quite simply, my own perspective and individualized inclinations. That said, I can tell you (and any Parent reading) that my comfort with what Matthew (my son) and I share, in our partnership in life’s challenges, began with my acceptance of, the reality that we all … every living, breathing, struggling one of us, live with our own set of ‘disabilities’ and ‘handicaps.’

While Matt’s are more obvious and clearly pronounced than others’, I have accepted the fact of my responsibility to confront and manage my own … and to help him identify (in the most gentle and tenderly ways possible), and deal with his. I have, simultaneously, allowed my Self to be open to, and receptive to, the difficulties and frustrations in the lives of those whose life-paths intersect mine. And I discuss, with Matt, these obstacles, to ease-of-living, so that he can share, with me, an active appreciation, of the hurdles that beset others. We discuss possible ways that we can compliment and make easier the lives of Friends. And we have conversations centered around our responsibilities, as Human Beings, to the world around us. This has given him a sense of participation and worth, in caring for people along the way … and has (while not spelling out or focusing on his own set of Complications) allowed him to gain a sense of worth as a Care-Giver for others. It, also, takes the intensity of focus off of all of the daily irritations that his cerebral palsy unrelentingly visits upon him.

This “Mechanism” (if you will) has proven to be a ‘tool’ of some considerable worth in my set of ‘coping implements’ … for us both.

How emotionally difficult is it for a parent to see their son or daughter unable to do things that others may take for granted?

The “emotional difficulty” is compounded by the reality that (in Matt’s life) he does not possess the mental acuity to enable him to thoroughly process the complexities of his handicaps. While he is at a high level of what would be labeled as “trainable” (God! How I do hate those labels!) he is obviously vexed by his awareness of the areas of life and living that are part of the experiences of those around him … and his inability to participate or be included in them.

I then, accept the responsibility (inasmuch as I am able) to “feel” and “sense” these vexations for and with him … then translate them into means of communicating to his level of comprehension and appreciation of them … to him. All the while wanting (at my emotional core) to curl up in a corner and weep for him. Emotional exhaustion and an ever-present sense of being emotionally spent has, consequently, been my life-companion.

How does a parent express concern for their child's well being without coming across as overly intrusive or pushy?

In a word … you can’t! Yep! That’s about it. My experience has been that if I am willing to let Individuals or Organizations … whose role or mission in life is to ’administer’ the programs or services (I use the word advisedly) that are intended, by well-meaning Initiators, to reach out to the needs of those who find themselves less than optimally functional … operate at their own discretion or with their own set of priorities … my son will suffer neglect and even some measure of abuse.

Yes, I know that that sounds harsh. And I do wish that it was not the fact. But it has proven, over and over, to be the Reality. But … when I take the active, involved, persistent, and (in the view of some) “overly intrusive or pushy”, I have found that I can cut through the layers of superficial and uncaring individuals and programs … and mine the nuggets of wonderfully committed and professionally devoted gems who give of themselves willingly and thoroughly, for the benefit of those to whom they have dedicated their lives and careers.

So, I make Matt the “Good Guy”, and take the mantle of “Enforcer” upon myself, for his benefit. This has worked out to be most successful and beneficial for all concerned. It gets past the layers of incompetence and wasted time and efforts quite quickly. And gets us to the “good stuff” with a minimum of wasted energy and emotion (which, by virtue of living with this situation, are already in short supply.)

What is the best way for a parent to offer help?

I think that this is most effectively accomplished by becoming a living and breathing part of my son. I have permitted my Self … nay, demanded of my Self … to be … actually and legitimately become an element of my son’s Being. I feel what he is unable to feel. I think what he hasn’t the capacity to think. I sense what he wants to sense, but can not get through the haze, of his brain’s unwillingness to cooperate, to sense. I offer tears when appropriate … whilst not giving in to self-pity. I offer determination … where he is not equipped to be determined for himself … whilst guarding against insensitivity or lack of empathy. All the while recognizing that this commitment to Matt is made at the expense of other life-demands that must be sacrificed (willingly … even happily … and without remorse of bitter regret) for his ultimate benefit.

All too often, I have known parents who let it be known that they are some figure of “Noble Sacrifice” and are ’giving up’ something for their child. Horse hockey! (That’s about as ’cleaned up’ as I can make that. [smile]) Firstly, their child is constantly aware of this added burden upon their shoulders. They hear and sense their parent’s bemoaning of their ’plight’ in life. And that child has this ’gift’ to deal with, in addition to all of the garbage that is incumbent with whatever life has given them.

No! My son’s handicap is something that I accepted, at the very outset (when he was diagnosed, at less than one year old), as Life’s enabling me to grow and develop into far more than I ever would have, otherwise. I had to become more of whatever a man can be … to be what my son needs his father to be. I accepted Life’s challenge to develop Character and Strength that I would never have known without the demands and needs of my son’s circumstances. Matthew has only sensed and known the reality that I am indebted to him for my life’s flourishing. And he has a comfortable and calm assurance that I appreciate him … far beyond his cognitive abilities to reason out those truths.

These are my own perceptions of the best ways that I can be of help to my son … and simultaneously, my Self. Best summed up in ... give. (Which, I suppose, is the best way to benefit any relationship.)

Can you give any advice to the parent who has been seemingly pushed away after offering help to their adult child?

This question stings.

Three years ago, Matthew phoned me and asked me to cease phoning him, and/or seeing him. “When you call or we are together, it upsets Mom. And that makes me nervous. And I can’t deal with it.” he said. Understanding his Mom’s temperament and personality (which I have [Thank Goodness] taken a good deal of time and invested a considerable amount of effort in studying), I understood what he was saying. So, I agreed. And said, “Goodbye.”

Because I have an absolute certainty that Matt’s ability to make that phone call to me was born of all that we accomplished over the thirty two years prior to the call … and I know the stresses and tensions that he was referencing (after twenty years of marriage to his Mom) … and my certainty that I can look Life full in ’the face’ and give an honest account of my Self, and my having given absolutely all of all that I had of Me, to him … I have accepted, and respect, his choice.

For me to demand some form or sort of “Parental Rights” in maintaining contact with Matt, would be an exercise in selfishness. It would be at the expense of his comfort and tranquility. And it would serve no purpose other than negative ones, including putting him in the center of a tug-of-war that would render no possible benefit of value. So, I have had no contact with the Son who I spent every week-day, of every year, after he ’graduated’ from school (9 years) … for nearly three years now. Hence the “sting.”

In your experience of parenting your own child who has a physical disability, what was the hardest aspect for you?

The loneliness.

What gave you the greatest joy in parenting your son?

The day that he looked at me and said “My brain doesn’t cooperate sometimes.” It was a bitter-sweet moment in which he attained the level of acknowledging his challenges. This represented a heartbreak in our joining of awareness … and the joy of his readiness to deal with some of his own frustrations.

Last thoughts?

Life is … ultimately and beautifully .. GOOD!


Just Joni said...

you are a patient and loving soul JM...I was unaware that your son did not live with you...I hope the "sting" is lessened by knowing him so well...

interesting interview...candid and heartfelt, but I'd expect nothing less...*wink

wishing you joy in these last few days of 2008 ~ where does the time go?

Casdok said...

'I offer determination … where he is not equipped to be determined for himself.'

These words stood out for me.
Thank you for sharing.

John-Michael said...

How lovely, Dear Casdok, to consider that I could bring something that I can give to you as a gift, from my respectfully admiring Heart. Yours has always been a Story that I bow to in humble honor and appreciation. I would, if only the power was mine, lift, lighten, and make smooth the path that you walk.

Lovingly ...

John-Michael said...

It pleases me to know that this bit of openness has revealed more of who I am and what I am about to you, Joni, My Precious Co-Pilgrim in our earthly walk. Any possibility that we can walk closer and more in step with each other is an opportunity that I do not want to miss. I treasure our extraordinary friendship and the love shared in its embrace.

Lovingly ...

Anonymous said...

Thanks for sharing this John-Michael :o)

John-Michael said...

You, My Dear FXSmom, are more than welcome! 'Tis so nice to hear from you. I send a Heart-smile to you ... for, hearing from you, makes my Heart smile.

Lovingly ...

Carole said...

Remembering Matthew's birth, and reflecting on your words within this interview and the other Matthewisms, my heart and mind is deeply touched with warm memories and poignant thoughts. You indeed are a special dad and a unique caring person!
Those who are privileged to call you friend are truly fortunate, and so glad to be within that realm.

John-Michael said...

My Darling, Precious Carole... I have no dearer nor treasured Friend than you. And I count every year and every experience accumulated over these past 40 years of our becoming part of one another, as Life's finest compliment and Gift to me. Your faithful and true steadfastness in our shared life=experience makes mine so much richer, and more fun!

Thank you, Dearest One, for your kind validation of all that I offered in this bit of an interview. You ... better than anyone else ... have the ultimate perspective and honorable Character to know that validity of what I have offered. To 'hear' your words reassures me that I have, indeed, been as candid and forthcoming as I tried to be.

I love you, Carole.

Mrs. C said...

"In a word … you can’t!"

(You're so right John Michael!!!)

"Yep! That’s about it. My experience has been that if I am willing to let Individuals or Organizations … whose role or mission in life is to ’administer’ the programs or services (I use the word advisedly) that are intended, by well-meaning Initiators, to reach out to the needs of those who find themselves less than optimally functional … operate at their own discretion or with their own set of priorities … my son will suffer neglect and even some measure of abuse."

Oh, yeah. That's why we're homeschooling. Because the public schools find autistic kids are so much easier to deal with when ya lock 'em in the closet, you know?? Stupid school system.

I have to just submit for your consideration on the "sting..."

Is it possible someone may be manipulating your son into this request of no contact? Would it not be ok to have an intermediary ask if he might want contact later, or a Christmas card or something? My heart just aches reading that. Of course you know best, but the mom in me just goes, pretty please can't he just say hi sometimes???

John-Michael said...

My Dear Mrs C, I see that I struck a note of familiarity with you and your experience. I hope that, in some way, I have encouraged you in your efforts.

And, yes ... I did pursue an 'intermediary' intervention (I am really not much of a "roll over and play dead" sort of guy [smile]), but was informed by "the authorities" that, inasmuch as Matt is of "legal age," and has not been legally determined to be incapable of acting on his own behalf (something that I would not subject him to) ... and he was not "encouraged" to sign a "release form" that would give me access to him and/or anything having to do with him ... I had no "rights" to discuss him or to have anyone else discuss his personal situation with me. So, I am legally, and actually, isolated from him. Yep! It just keeps "stinging!"

Your concern and care is, nonetheless, appreciated. Thank you.

Lovingly ...

Classic Charm said...

I didn't realize you hadn't spoken or seen your son. That breaks my heart. But you are so lucky is Matt to have you to call his "dad."

John-Michael said...

As I said in the interview, it "stings," Rose, My Darlin.' Thank you, though, for your kind thoughtfulness. I love you.

My 'Hugs' to you ...

Sandra Ree said...

John-Michael, wishing you a very Merry, Merry Christmas. Miss you. xo

John-Michael said...

Thank you Sandra, My Dear Friend. My Heart sends affectionate and fond wishes to You in this special time and season. ('cause I love you)

Lovingly ...

Annette said...

SUPERB!!! My son has ADHD and it has been a struggle all of his life, especially with schools...they want zombies in class, not my baby, I wouldn't allow it, he older now and handles it extremely well, with out med's, life is still difficult for him tho...I have a god daughter with downs syndrome, shes my love, I don't really understand why they call "Downs syndrome" she's anything but down, it should be retitled to "Up Syndrome", her Mom worries about her future and public schools and etc, and stranger's, complete strangers will ask the most uneducated questions, like. "Did you Know" would it had made a difference if Mom & Dad did know? I don't think so, "How bad will she be when shes older?" ummm, lets see here.."How bad is your child?" shes is such a blessing in my life, and the love the give away in truly a gift, a gift I got to experience with her birth and being given the honor of being her God Mother!!
Hugs to you
I hope you have a wonderful Christmas!

Annette said...

Good evening...If it's alright with you, I added you to my list of "Sweet Friends to Visit" on my blog, if it's not alright, I can, with much regret remove please let me know. Hope your having an excellent evening!


nitebyrd said...

While I'm sorry that you don't see or talk to your son, I'm happy that you were able to see the good you'd done.

You are a good, strong, intelligent, caring, wise human being and father, John-Michael.

May this new year bring only good things to you.

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