disabled children

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Look Around to Get Strength and Perspective.

My sister and her baby.

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Self-Care Tip #145 – Look around to get strength.

I was talking with my colleague, Janice, who works intimately in the area of group homes and advocating for the clients.  I asked her to tell me something about them.

There are times when parents give up and they can’t provide.

I wrote a blog-post some time ago relating to this as I work with many families who are near this point or past it.  Taking care of ourselves can be hard enough in this world, let alone a disabled child or two, or three…  I’ve seen marvelous results from placements.   However, my blog-post, “Get in Someone’s Space” got a response that was not so complimentary.  I asked Janice about where she thought the comment was coming from.

There are a lot of good group homes but many are not.  The workers are paid minimum wage often and they are saints.  There are about 1/2 and 1/2 that are good v. not good.  They can make a lot of money potentially.  In some of the homes, the workers are ambivalent at best.  It is a job to them.  If they do care but are surrounded by people who don’t care they lose steam.  They can’t do it all.  Emergency homes are also useful to give parents a relief.

Some of the disabled in placement have no family involved.  Others do.  And in those that do have involved family give their family some time to recharge while in placement.  The family can recharge and use that new energy for things like continue to “shop” further for the best fit for placement.  It can be work to find the right placement and get someone moved there.  Then after that challenge is met, families will find other struggles.  Struggles such as placement being so far that the family can’t visit or be as involved as they’d like.  They find, as we all do at some ah-ha moment(s) in life, that we can’t have it all.

Mr. Rick stated it well.

I will not be a victim while choosing my burdens.

We could also say, “I will not be a victim while choosing my benefits,” perhaps.

I understand that the topic of disabled family and/or group home placements may not interest all of us.  It may not appear at the surface to be an issue involving eternal truths.  Yet, we see that it does.  We are, each of us, not so far removed from unfair life circumstances.  From choices that look “bad and also bad.”  Or could we say, rather, that look to be choices between “one benefit and another,” knowing that we can’t have it all?

No.  We are not so far away from the single mother raising her two mentally retarded children.  We are not that distant from the caregiver with license to house five children but can’t find good staffing.  We can see the fetal-alcohol syndrome child who got what he got from birth and will live where they are until they die with staff as their family.

To my parents who can’t give any more, choose your benefits.  They are there.  To my kids who are confused by their own behaviors and emotions, to my staffers who struggle to understand the value of their jobs, to you who feel more of the burdens than the benefits, to all of us, we are the same in this.  We are each other’s “people.”  We have this knowing.

Look around.  Gather strength and make your choices.

Question:  What has enabled your perspective?  What part came without effort and what part didn’t?  Please tell me your story.

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What Are You Getting From Pain?

For most people the aftermath of a punch in the face means a phone call to the police or a trip to A&E. But not Lucian Freud. His reaction to a nasty altercation with a taxi driver was to put the pain and anger aside and head to the studio to get his rather impressive black eye down on canvas.

guardian.co.uk – Lucian Freud

Self-Care Tip #136 – Get something other than anger from your pain.

Naked came I out of my mother’s womb, and naked shall I return thither: the Lord gave, and the Lord hath taken away.

Say it however you want, everyone gets and everyone looses.  We could say, “Life,” if you prefer.  Or insert wherever you think good things come from and where they go.

Who hasn’t just gotten their fingers around something they wanted, realizing more and more each moment that they really wanted it, pleasure rising, gratitude and satisfaction driving itself deeper inside – just to find it somehow escaping their grasp?

Morris Venden, preached it.  He had a low, hound-dog voice, a face to match and severe social phobia he struggled with life-long that just added to his beauty.  He preached his own shared experiences with people.  People like me and you.

A man working a job he never liked finally retires and buys his little house to grow old in, a garden he could play with, and a year later finds the love of his life suddenly dead with cancer.   And it all turns to ash for him.

 

Early portraits by Lucian Freud

Your firstborn dies.

You were cruel in a debase way.

You develop mental illness.

Your divorce is ugly.

You father commits suicide.

You have a disabled child, and then another.

You’re paralyzed.

You prostituted yourself for drugs.

When I heard Venden give this talk the first time, I thought I got it.  Even now after years and after darkness, I think I get it.

Before one of his talks, when I was still in medical school, Venden asked me to sing this with him.

Angels never knew the joy that is mine, for the blood has never washed their sins away, tho they sing in Heaven there will come a time, when silently they’ll listen to me sing “Amazing Grace.”

We stood there on stage.  Me smiling too largely because that’s what I did in front of people.  He, uncomfortable, a little blunted and suited with a thick knotted tied, stood a few paces away.

And it’s a song holy angels cannot sing, ‘Amazing grace, how sweet the sound. ‘And it’s a song holy angels cannot sing. ‘I once was lost but now I’m found’

I looked at his droopy moustached face and his eyes were red and wet.

Holy is the Lord, the angels sing, All around the throne of God continually.  For me to join their song will be a natural thing.  But they just won’t know the words to “Love Lifted Me.”

This is what Morris Venden thought he was getting from pain.

What ever our pain-story is, was, and becomes, holding the anger is gripping the ash.  For Morris Venden, he took care of himself by finding this instead of anger – more knowledge of God’s love.  Moving his grip to that was his self-care.

Question:  What are you getting from your pain?  How do you do self-care when you lose?  Please tell me your story.

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The Presence of Stress Doesn’t Make the Disease Process Any Less Important

sciencealive.wikispaces.com

Self-Care Tip #135 – If it’s medical, call it medical and not stress.  Be a friend to yourself.

New to me, Stacy came because of her problems with violence.  She was enormous.  5’11” and 200 pounds, she was just too big for her parents to handle her any more.  She was precious to them, their only child.

Taking Stacy’s history, I asked, “Does your family have a religion you practice at home?”  Stacy’s parents were giving her history since Stacy was disabled and used very few words.  Mom looked at me, and asked, “Why?  Why are you asking about our religion?”  She was sensitive.  Worried that I was packaging her up in a religion-box, she personalized my question.  I explained that religion is part of family culture and the question was simply part of getting to know them.  She relaxed a little and then said, “We have more of an ‘Autism’ home-culture these days!”

Mom looked tired although still very much engaged in her daughter’s life.

It often happens, when someone see’s me in clinic for the first time, that my questions take them by surprise.  They aren’t used to someone so directly and objectively asking and speaking about them and to them.  So it went with Stacy’s mom.  Question after question, she seemed to be in a mild state of wonder.  It wasn’t gun fire but she might have felt like it was.

“Does anyone in your family have emotional illness?  Any depression, anxiety, suicide, drugs, alcohol…?”  Why do I want to know about the family? her face said.  “No!  No one.”  I was just ready to move on to further history when she said, “Well I… I have been depressed a little on and off but I don’t have depression.  Who wouldn’t feel depressed with this stress?!”  And then Stacy’s case manager said, “Who wouldn’t feel stressed in your situation?!” and smiled and laughed with her to put her at ease.  Stacy’s case manager is a nice person.  She is bonded to the family and cares about each of them.

We completed our history and formulated a treatment plan together.  Stacy had sat mostly quietly through the hour and her parents were now at ease.  Before they left, I was able to share with Mom a couple of sentences on taking care of herself.  On seeing herself as important and in doing so, was giving Stacy the best gift she could.

What I would like to say to Stacy’s mom and to her case manager is that thinking depression is because of stressors is a great lie.  There might be some initial correlation but it is often not the point .  The real issue is medical.  I wanted to tell Stacy’s case manager that she should know better than to promote this.  I wanted to tell Stacy’s case manager that helping Stacy’s mom not minimize what she was going through was friendlier.

Stacy’s mom is not my patient, but I did pick up that she is sad, fatigued, personalizes things that aren’t about her, anxious, a little hypervigilent and suspicious, and that something biological was likely going on.  Everyone has stress, but not everyone reacts the same way.  Some of us get ill for biological reasons.  Using the stressors as decoy to the disease only preserves the state of suffering.  And it affects everyone.  Mom was part of Stacy’s recovery too.

Question:  How do you see the relationship between stress and mental illness?  Please tell me your story.

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Don’t Waste Your Time. Do Your Thing.

[en] teacher, profesor, educator, school pt pr...

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Self-Care Tip #101 – Don’t waste your time if you don’t have to on things you aren’t good at.

Ben is almost 16 years old.  His parents are happy because he’s not as depressed, more interactive and more interested in connecting with others.  They came with him to see me.  Ben gets easily overwhelmed trying to tell me about himself and his parents often interject to help him out.

Ben’s parents are parents to admire.  Patient and clear-sighted regarding values and presence.  I’ve caught my breath more than once in the company of their comfortable regard and affection for their disabled children.  (Ben’s sister also suffers from mental retardation.)

During clinic, Ben struggled to tell me he was bothered and stressed by the school staff pressing him to learn things he didn’t care about.  He lost his words over the bits about how it related to his self-esteem and looked at him mom.

Mom told me Ben doesn’t care about some of the topics he’s taught and he gets sad and anxious when he thinks about it.  He’s embarrassed by it because he doesn’t finish as quickly as others and misses some of his lunch time.

I’m not a high school educator but I still told Mom and Dad that they can feel more confident advocating for Ben’s interests and needs with his teachers.  Ben will excel more in areas he is interested in.  He will find more pleasure in them.  He will be more empowered emotionally.  He will  be more ready for his adulthood needs.

The pressure many of us grew up with to be good at everything, is bogus.  We shouldn’t.  What we should do, is be good at what we are talented at.  We should be good at what we are interested in.  In fact, be shameless about it.  I spoke about this in the post “Do What You Were Designed to Do,” amongst others if you want to read more.

Ben with his parents looked at me with something of relief.  They had “permission” to do what they wanted.  The rest is mostly a waste of time.

Question:  What has opened you up to doing what you want to do in life?  What has that done for you?  Please tell me your story.

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Get in Someone’s Space

The woman writes, but only for herself, she says.  “Why?”  I can’t remember her answer.  My thoughts stayed on the question, wondering why we don’t connect with our community.

Dropping off my children at school this morning, I noticed the pubescent girl with blunted face, guarded eyes, crossed arms, standing alone even surrounded by other kids.  Ouch!  I wanted to hover over her.  Guard her from what ever it is that’s scaring her.  Touch her arms and hair and make her understand that she is important to the universe on a small-scale and large-scale.  Of course I might have been arrested if I did, so I just walked on to safety.

Jeff Wise, author of Extreme Fear: The Science of Your Mind in Danger, writes

A feeling of connection to others is nature’s Xanax.

Some of my families with disabled children struggle hard to take care of their own.  They often wait until at cliffs edge emotionally, financially, physically to consider placement for their disabled child.  When helping them get past their barriers to placement, we find guilt, fear and shame in the way.  These children often do better physically and emotionally when they are in group homes and away from the emotional burdens in their nuclear family homes.  We need community and community needs us.  Each of us.  Joana Johnson, neuroscientist, says that placement, is in fact a way families can connect with their community and with their child.

Some skeptic personalities struggle to trust the links between us, not out of paranoia, but rather because it is the hard-wiring in their nature

to question things. There is also the introvert, who is often alone not because they don’t like people, but because that is how they get energy.  However, regardless of genetic predispositions, we are all designed to have community.

Mary Shelley tells us through her Frankenstein, that we are better people in the company of others.  We see forces that keep us from sharing ourselves.  But let us not believe those forces.  Break past.  Let us believe our own better Creator who tells us, connect.  Tell our stories.  Stick a finger out and get in someone’s space.  Do what we must to let them into ours.

Self Care Tip #42 – Share yourself and get community.  Be a friend to yourself.