You are here: Home / Archives for July 2011

Playing and Praying

July 31, 2011 By Leave a Comment

Let us hold unswervingly to the hope we profess, for he who promised is faithful. Hebrews 10:23

This week has been full of bad news as several extended family members and close friends are really, really hurting. My heart aches for them as they each face heartbreaking situations. I find my mind going back to these situations throughout the day as my children and I play and do the necessary household chores.

In the midst of my playing and praying, a song my daughter learned at Vacation Bible School a few weeks ago has really been ministering to me. We listen to this song at least five times a day and almost always do the hand motions that go along, because it just makes the song more fun! :)

Here are the lyrics:

“Counting on God”

VERSE 1
I’m in a fight not physical
And I’m in a war
But not with this world
You are the light that’s beautiful
And I want more
I want all that’s Yours

PRE-CHORUS
Joy unspeakable that won’t go away
And just enough strength
To live for today
So I never have to worry
What tomorrow will bring
‘Cause my faith is on solid rock
I am counting on God

CHORUS
I am counting on
I am counting on God

BRIDGE
The miracle of Christ in me
Is the mystery that sets me free
I’m nothing like I used to be
Open up your eyes you’ll see

Jared Anderson
© 2007 Vertical Worship Songs
c/o Integrity Media, Inc., 1000 Cody Road, Mobile, AL 36695
All rights reserved.

As I listen to this song, my heart screams ‘I want more, I want all that’s Yours,’ Jesus. I need more, I really do.

I especially love the pre-chorus because so often I really only have just enough strength to make it through the day. I may have run out of my own strength, but the Lord carries me through as only He can.

So I am counting on God today, in a deeper way than usual, to give comfort, peace, hope, wisdom, courage, freedom and healing to all of us who really need it. Our faith really is on solid rock.

~Lynn

Filed Under: Encouragement, General, Hope, Prayer Tagged With: ,

Asperger Fashions – Not!

July 30, 2011 By 2 Comments

Years ago, a chilly February morning found my son disappearing in knee shorts into a maze of middle school khaki pants. “That’s a good thing,” I mused to myself. “He’s so independent minded, and can buck the herd!”

By high school, he wore (or wanted to wear) the same shirt day after day, clean or not. I moved to the “well that’s just weird” stage.

Assuming that by age 18 Henry should be able to select his own graduation slacks, I sent him off with cash for solo shopping. Big mistake. Back he came with a male version of capris – odd looking pants suitable, maybe, for sailing – but not even close to the defined graduation attire. My mad dash back to the men’s department averted that wardrobe crisis.

In college, Henry was invited for a group photo meant for a college newspaper, but arrived in clothes so ill-fitting and oddly worn that observers were dumbfounded. Others in the photo as well as editors saw Henry’s appearance as (clueless) sabotage of the photo shoot, so that was one photo that never made it into print. As usual, I explored the incident in a gentle “post-mortem,” which seemed like another failed effort to inject some fashion common sense.

An especially poignant moment came with a post college job interview. Equipped with a closet full of nice, actually, expensive clothes, Henry somehow unearthed someone else’s majorly ill-fitting shirt. Laying eyes on him upon his return, I knew that interview was over before ever begun.

Stuffing my mind’s “are you crazy!” response, I inquired about the interview, easing towards the clothes issue. “So, where‘d you get that shirt?” I inquired. Found it in some closet, he said. If it looked better than his own, why not? “Because it’s about three sizes off, is why!” I replied. “This must have made an odd impression when you walked through the door!” I added, in a cautious effort to make the point without overkill.

“Mom!” replied a frustrated Henry. “I don’t see what you see when I look in the mirror!”

“I believe that,” I responded in massive understatement. “But your fashion eyes will sabotage goals that are very important to you. So let’s work on a uniform for job interviews and other events. Then, don’t deviate! Don’t get creative! It’s like the military – show up with even one item off and you will pay – big time.”

During the same conversation, Henry announced that his research led him to conclude he was “mildly Aspergers.”

“Yes!” I shouted – in my head, having discussed this issue with him years prior, to his great consternation. “Well, I agree,“ was my quiet verbal response. “So, this is good. Now we can work together on a map to a better place.”

I now know from extensive reading on Asperger Syndrome (AS) that clothes are a common giveaway. Ill fitting. Smelly. Dirty. Mismatched. Alien to situations or to peers. Not necessarily all of the above with one person – but sometimes, yes, all of the above.

Parents say, “Those clothes don’t work.”

Mr. or Ms. AS ignores.

Peers say, “Dude! You smell!”

Mr. or Ms. AS feels insulted.

Where does the tipping point come? Sometimes when a romantic interest rejects the AS person in disgust. Sometimes when appearance transforms a major opportunity into into a fiasco. And sometimes quantum mass – critiques mount until even the influence-deflecting AS mind accepts perspective outside of their comfort zone.

Where are we now, months after that Disaster Interview?

I have to say, Henry often looks quite spiffy these days. Maybe a little this or that is a bit off, but within the norms of his peers. Even when hanging out at home, his “sloppy” clothes are less so.

If only we can transfer that neater norm to Henry’s room. Stay tuned.

Filed Under: Asperger Tagged With: , , ,

On God’s Comfort

July 29, 2011 By Leave a Comment

One of the things I love about this blog is how we can all relate to one another, even when the disabilities we live with are vastly different.

Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God. II Corinthians 1:3-4

Louise asked on a recent blog post, “Is this particular issue a result of (my son’s) disability or is it normal teenage behavior?”  I know this is a question I’ve wrestled with over the years, although the details of my circumstances are unique to me.

This past week, Ben lost his wallet.  In many families, this may be a common occurrence.  People can be absentminded.  Before Ben lost his memory, he was always misplacing things.  (I remember one morning when I was still in bed and Ben was getting ready for work.  After taking his socks out of the drawer, he simply could not find them.  He was so frustrated as he retraced his steps.  “I just had them,” he cried.  Finally he put on a new pair, perplexed by the mystery.  If I hadn’t gotten out of bed to hug him goodbye, he would have left for work wearing the first pair of socks slung over his shoulder!)

Now when Ben misplaces things, he experiences an overwhelming sense of failure and loss.  He is confronted by his limitations, reminded once again of the disability that he spends so much time trying to manage.  His behavior may not be strange or unusual … but our responses of grief and frustration are reminders that there is a hidden disability, that things are not “as they should be.”

The posts from other women on this blog encourage me by reminding me that I am not alone.  I can receive comfort from other women who have been comforted by Christ.  And by God’s grace, perhaps I can comfort someone as well.  Our circumstances may be different but there is enough overlap for us to walk alongside one another.  We can receive counsel, encouragement, and hope from the stories we share.  How thankful I am that God has created us uniquely His, with unique stories to share.  And how thankful I am that the strong and powerful Lord who created the heavens and earth is walking right along beside us.

Ben found his wallet, by the way.  It was on our bed, underneath the basket of clean laundry that he brought upstairs!

On another note, I’ve decided that Ben’s lost wallet is a metaphor for life with God, particularly for living a faith-filled life with someone with a disability.  We would not have given thanks if Ben never lost his wallet.  But because this key accessory was missing for a short time, we rejoiced when it was found.  If everyone in our familes were “neuro-typical,” we would be less likely to give thanks for the “small things.”

I would be a less thankful person if it were not for Ben’s disability.

~ Nancy

 

Filed Under: Acquired Brain Injury, Encouragement, Executive Function, God's presence Tagged With: , , ,

Are You a Strength Miner?

July 27, 2011 By Leave a Comment

As a clinical companion of wives, husbands, mothers, fathers, sons, daughters and siblings on their life journeys, I’ve come to see a strength focus as a predictor not only of personal well-being – including that of special needs populations – but also of family happiness and relationship satisfaction. Best selling author Tom Rath offers intriguing clues for how strength miners gain advantages lost to others.

In Strengths Finder, Rath notes that workers whose jobs are linked to their aptitudes and skill sets gain confidence, direction, hope and kindness, rippling benefits to families, friends and colleagues. They are also shown to be three times more likely than other workers to gain an excellent quality of life, and six times more likely to engage in their work.

For parents, the question becomes – how can we not only mine strength in ourselves, but in children – and in spouses, for that matter? How can Chosen Families pull this off, especially when confronting stark physical, emotional, psychological and financial burdens?

In fact, strength-mining can ease such challenges and compensate for angst-loaded dysfunctions.

A potent illustration comes from a late 1800’s family that viewed one son, Will, as so dim-witted that by the sixth grade they pulled him out of school, with teacher approval. No point wasting resources on dull ole’ Will.

Hired by his medical doctor brother, Will was saddled with 15 hour workdays at wages that peaked at $87 monthly. Treated as a flunky in a spa catering to wealthy clients, Will suggested marketing customized spa foods, including smushed (ruined, was the thought) and accidentally dried corn kernels – that became surprisingly popular with clients. Dismissed by “Doc,” Will reached beyond his disdainful brother’s oppressive world to sell the corn flakes on his own.

Thus was Kellogg’s born, which “dull Will” Kellogg cleverly guided to a 100-million-dollar enterprise during his lifetime. Will’s problem? He was dyslexic – a dysfunction leading his family to under-rate and limit an extraordinarily gifted life. As Will shed family and social stigma, he identified and unleashed remarkable gifts masked by a neuro-visual disability.

Even loving families can bind disabled members in needless helplessness, inertia and isolation. In The Man Who Mistook His Wife for a Hat, neurologist Oliver Sacks describes Madeleine J., born blind and hampered by cerebral palsy. When institutionalized at age 60, she helplessly awaited others to feed and care for her. Sacks was confounded. Why couldn’t she feed herself? He instructed staff to place food near Madeleine, but not feed her. Sure enough, driven by hunger and frustration, Madeleine clumsily grasped a bagel and lifted it to her lips, a process previously denied by her doting family. In that instant, the “helpless” spell was broken and she was transformed. She soon eagerly reached to feel faces, as neurons lit her brain with images of those speaking into her dark world. Transferring those images into lumps of clay, she produced such remarkable sculptures that she became known in New York as the Blind Sculptress of St. Benedict’s Hospital.

Determined to protect a cherished daughter, Madeleine’s family failed to explore her strengths. Northern Virginia’s Michelle Mack was more fortunate. Due to a stroke in utero, Michelle was born with the left hemisphere of her brain nearly destroyed. But as I have observed, and as seen in PBS special The Power of Half, her faith-filled family helped mine strengths that not only build competencies, but tend to upgrade mood regulation, judgment, empathy, altruism and relationships, as well. Peering past disabilities, doctors also found in Michelle stunning savant gifts now chronicled in New York Times best seller The Brain That Changes Itself.

Clients who arrive at my door with physical, emotional or relationship distress often make remarkable progress when disorders are approached through a back door – through strengths. Yes, the disorder matters. But mining often undiscovered or neglected strengths can progressively revise the autobiography while leveraging internal and external resources that dilute deficits. The process also tends to upgrade the SLQ – Self Love Quotient – which, as it happens, Jesus linked to our capacity to love others (Matthew 19:19).

We’ll take his word for it.

Filed Under: Encouragement, growth, Journey Tagged With: , , ,

What DO You Say?

July 26, 2011 By Leave a Comment

Sunday was a sad day in our house. Katie (our 10 year old neurotypical daughter) discovered that her fish had died earlier in the week while we were on vacation. This fish had been given to her by my sister and he was all hers–as was the responsibility for caring for him. I will admit that I was the one who cleaned the fish tank, but that would have been hard for her to do alone. There were also many mornings that I fed him when I found the poor little fellow sitting in the dark presumably unfed during the morning rush. But, he was her pet.

When she came to us crying I resisted the urge to comment on the big responsibility pets are. Nor did I mention anything about the natural consequences of habitually not feeding one’s pet, although those are both thoughts I had. I just held her and told her I was sorry. This response has come from many years of repeating platitudes to ease other’s grief and then hearing those same comments in my own moments of grief. I have come to realize that there is much comfort in the heart-felt hug and sometimes in silence.

Stephen, on the other hand, wanted to try to cheer his sister. He offered these words of comfort, “well, at least you don’t have to worry about feeding him anymore.” Needless to say, it didn’t help.

Sometimes it is difficult for all of us to know what to say to someone who has experienced a loss or a tragedy. How much harder it is for individuals with Asperger Syndrome who don’t easily recognize that their comments might be offensive to others. So, I think some time very soon Stephen and I will have a talk about times when it is most appropriate to keep our thoughts to ourselves and just offer a comforting hug.

~Louise

Filed Under: Asperger, Grief, siblings Tagged With: , ,

Daddy Words

July 25, 2011 By Leave a Comment

Cami's First Dance, December 2001

Since she asked Jesus to come live in her heart and take her to heaven when she dies, her dad and I have tried to teach Cami how to walk with Jesus here on earth. Most of that training consists of living honestly in front of her. As I struggle and run to God’s Word and eventually walk more confidently in Him, she sees all of it.

We talk often about how the devil tries to trick our hearts. (Thank you for those words, Betsy.) He tries to tell us that we’re bad and stupid and ugly, and we can’t do anything right. But God’s word says those assessments of our character are lies. Psalm 139 says that God made us in a wonderful way. He doesn’t make stupid things, or worthless things, or unredeemable things. He formed us in our mother’s womb, crafting the bodies we have just the way He wanted to. He delights to watch us walk through our day. There’s nowhere that we can go where God isn’t. He has ordained—planned out, purposed, already made provision for—every day of our lives. He’s written every one of them down in His Book before we were ever born.

Cami's dad helps her diaper her dolly in 2001

Our family needs this verbage–the devil “tricking our hearts”—in our daily coping with hidden disabilities. It is hard to live in this world when we think and feel and process so differently. We are in a constant battle for our hearts, souls, and minds. Yes, Jesus is the Victor, and we are His servants. We belong to Him. Yet the enemy of our souls is relentless.

Just last night Cami was so agitated at bedtime, and the self-talk coming out of her mouth was more negative than usual. One long sentence ended with “You probably think I’m crazy, too!”

Wow. New curve. Pay attention and go after this one, Cassandra. “Cami, what made you say that? I don’t think you’re crazy.”

Cami and her Daddy try out the Blackhawk in 2010

“It’s okay, Mom. Sometimes even I think I’m crazy.” She climbed up into my bed and put her face down in the pillow.

I can’t count how many times in my 45 years I’ve wondered if I’m crazy, too. (More about that in another post.)

I climbed into my bed with Cami. “Love, who told you you were crazy?”

Muffled by the pillow: “No one.” She sat up. “No one’s actually said it, but they all think it.” She harrumphed and put her arms over her head.

Calm Mommy voice: “How do you know they think that?”

Cami sat up in a huff. “I can tell by the way they look at me!” She threw her hands up in exasperation. “Whenever I talk about seeing dragons or catching Pokemon, they look at me like I’m crazy! Even I think I’m crazy sometimes.”  Face down in the pillow again.

Oh, Lord, give me words. Please. We talked some more, determining who “they” is. I must confess to wondering if my daughter’s hidden disabilities go beyond the scope of learning disabilities. She sees things that aren’t there. She hears voices that no one else hears. My husband thinks our daughter’s eccentricity is delightful. Sometimes it terrifies me.

Last night, Cami didn’t find comfort in my words. Cami’s daddy spoke words of love, encouragement, and blessing over her, words that we both needed to hear. He reminded us how wonderfully God has made Cami. He recalled the story of creation, of Adam and Eve in the Garden, and how when God made them, He saw that it was very good (Genesis 1:31).

Cami's daddy shows her how to keep her balance

Cami’s daddy gave her words for how she is different. “The thing that makes you unique is wonder. Most other kids your age have forgotten how to imagine, how to walk in wonder. That’s why they look at you funny when you take time in wonder.”

Her daddy also told her that the next time someone thought she was weird, to tell them, “You should meet my dad. He was in a play once and went on stage dancing while wearing a diaper.” (He really did. I was there.)

Cami told me that today at the pool, another child looked at her weird because she took Littlest Pet Shop animals with her. “Mom, I told them that story about Daddy wearing a diaper on stage, and I giggled so much it didn’t matter what they thought.”

 

I confess that I’ve felt pit-trapped this summer. I’m letting the devil trick my heart. Jesus has set me free, so I am free indeed. Yet the accusations and self-assessments I hear in my head have me trapped in a pit of grief and despair. I’ve shared this tendency of mine with a few close friends, who seem to always call or email when I’m in the pit of self-condemnation. Their love and prayers don’t get me out of that pit. They remind me of the Truth of God’s Word, and it pulls me out of the pit, where I can feel the breeze on my face and the sun through the trees.

 

Cami and her Daddy in 2002

I am constantly amazed at how Jesus answers for us when the enemy accuses us. God’s Word is filled with truth about who we are in Christ.

How blessed I am!

Clinging to the Truth of my Daddy’s Word,
Cassandra

Filed Under: Confession, Parenting, Prayer Tagged With: , , , ,

Leaving the OK Plateau

July 24, 2011 By Leave a Comment

No, that’s not OK as in ‘Oklahoma,’ but as in ‘okay.’

 

Reading Joshua Foer’s Moonwalking With Einstein really impacted me on several levels. One was his chapter on The OK Plateau, “the point at which you decide you’re OK with how good you are at something, turn on autopilot, and stop improving.” People have asked me, “How long have you been playing the piano?” My stock response has been ”I’m terrible, considering I started taking lessons when I was 10″ (I’m 55). Now I know why! “Amateur musicians, for example, are more likely to spend their practice time playing music, whereas pros are more likely to work through tedious exercises or focus on specific, difficult parts of pieces…. When you want to get good at something, how you spend your time practicing is far more important than the amount of time you spend.” Now, I haven’t changed my piano-playing habits as a result of reading this book, although I did decide last year to memorize the theme from ”Chariots of Fire” and accomplished that feat over the summer. But I have changed how I think about exercising. I have been so sporadic, I’ve probably done myself more harm than good. “Yes! I’ve worked out one whole time this week! Hooray for me!” I had subconciously decided inconsistency was OK. But this week I got off the OK Plateau. I visualized myself looking around that desolate flatland and saying, “I’m moving. I don’t want to live here anymore. Where I am at right now in my physical fitness is not OK.”

 

Funny thing happened. That spilled over onto my OK Plateau of daily Bible reading, which had also degenerated into inconsistency. Are we seeing a pattern here? Where I am at in my daily Bible reading is not OK anymore. So I’m saddling up my horse and moving on to higher ground. See ya there, pardner.

Slowly but surely ~ Peggy

Filed Under: Confession, Discipline, growth, Self Care Tagged With: , , ,

Don’t Worry

July 23, 2011 By 1 Comment

I stood there at the crosswalk, bundled up in my Fall coat as a cool winter breeze was beginning to push in. My wingmate (as in college dorm friend) stood beside me. We were still newbies, only a few months into our first year away at college. The traffic cleared. We crossed the street and headed toward the dining hall.

I complained to her, “My Macro Economics test is going to be so hard. I don’t know how I’m going to learn all that stuff in time. There’s so much to remember.”

She said, “When’s the test?”

“Next Monday,” I replied.

“So why are you worrying about it right now?” she asks.

“Well, because I’m gonna have to study for it all weekend long,” I say.

She continues, “But why are you worrying about it RIGHT NOW? Can you study for it RIGHT NOW? Is worrying about it RIGHT NOW gonna help you do better on the test?”

I will never forget that conversation we had as we crossed the street (fourteen years ago this Fall). I have had to rely on that wisdom so many times since then. I do think it’s good to plan ahead, to consider your options, weigh the pros and cons, have a thoughtful discussion with someone who can help you walk through a tough situation. But worry is something altogether different and it’s not productive.

Kara

Filed Under: Asperger, Autism Tagged With: ,

That Blessed Free Will

July 22, 2011 By 2 Comments

I want to give my personal (I’m not a professional) answer to one of The Questions that faces a marriage with bipolar as the hidden disability. “What do I do if my adult loved one does not take their medications??” If you’ve never faced this issue, it’s only because your loved one has never TRIED medications. If they’ve ever tried them, more than likely they have tried to go off them. (At the moment, I have one family member who is very compliant with medication, and one who is very not.)

I understand the noncompliance. I’ve heard it said bipolar is the one disability where you feel worse on your medications, not better. It clips your wings, so to speak, so no more soaring to heights unseen, in thrilling euphoric moods … the only up side is less down sides –  fewer tail-spinning-plummets-to-earth crashes.  No thrills, AND side effects. That’s a hard sell.

In contrast, FAMILY members experience HUGE benefits when there is medication on board, so they are HIGHLY motivated to “help” someone take their meds!! But I tell you the truth – I have not met one single adult who became consistently compliant because someone else forced/coerced/manipulated them to take their medications every day. Every day just comes around too often for a relationship to survive the strain of a control issue like that. And if there’s one thing a bipolar hates, it’s feeling limited, controlled … I rather hate the feeling myself.

Not that it kept me from trying — for years. It seemed the loving thing to do. (And for the record, nagging doesn’t work for anti-cholesterol medications either).  It literally wore me out, and didn’t produce change. So do I live with destructive moods, no matter how it harms our family relationships?  No. NO!

Now I tell my husband what I need to stay in the relationship, for instance, consistent safety and respect. I let him know if he is on that course or not. How he gets himself there is up to him. We both know it requires medication. I do make it clear what I think will help, but he has to own the process and the choices or they don’t stick.

In the end, a very LONG end, most bipolars I know become compliant because of indirect positive results. My husband can’t perceive the direct internal mood changes as quickly as he can see the indirect external positives – the ability to do his job, his children wanting to be around him. He will be the first to tell you his choices that led to their choices to NOT be around him a few short years ago.

My husband eventually chose to be with his family, which means he chooses to take all the actions necessary to be consistently safe and respectful – he takes his meds. In contrast, his mother chooses not to. So, with love and respect we choose to limit our exposure to her. Practically speaking, we gladly help with her financial and medical needs, but do not invite her to live with us. 

In the end, we all get to choose. Jesus died to give back to us precious free will. The bipolar chooses to take the medication, or not. And everyone else gets to choose if they will remain in their presence, or in relationship with them. It’s often that simple. Lobby for all you are worth, but at the end of the day, let them make their choices. And then you make yours.

Free willing,

Joan

 

Filed Under: Bipolar Disorder, Marriage, mental illness Tagged With: ,

Focus

July 21, 2011 By Leave a Comment

One of the things we like to do to pass the long, hot summer days is to go to the science museum. It is about a 35 minute drive for us, so we have a yearly membership. The kids are always entertained, and it’s so much more educational than parking them in front of a television when it feels like it’s 147 degrees out.

Yesterday was one of those days.

While this blog focuses on “hidden disabilities,” I would like to point out what I view as a strong hidden ABILITY. G-man has TS+, with his “plus” being OCD. There is much discussion about the genetic components of Tourettes, but no one has definitively identified the mechanism of heredity. What is known, however, is that mothers of children with Tourettes have a strong tendency to have OCD. This holds true in our case, as I too, to some degree, am most certainly plagued with OCD.

With that aside, I go back to the science museum. I am amazed at my G-man’s ability to focus. He can find one exhibit that catches his attention, and he can spend all day planted there. While most children in the museum (my other 2 included) jump from one exhibit to the next, excited about the over stimulating stream of new sights and activity, my G has all 5 senses engrossed in one activity. Sure, this can cause trouble when my other 2 are ready to move on, or the line behind G-man becomes increasingly long, and I have to FORCE him to move on … But his focus is amazing to me. His attention to detail, for a 6 year old, is unmatched. During the school year, we had some trouble with transitioning from task to task. I’m sure, in the future, this will continue to be an issue. But I prefer to view this as an ABILITY that not everyone has. Some day, hopefully my G-man will choose a career that capitalizes on his ability to focus. An engineer, perhaps? Or an architect, where fine detail is oh-so important….

Until then, we will just have to work through the complications of his “ability.”

Amazed,

Cape wearing mommy

Filed Under: OCD, Parenting, Tourette Syndrome, Uncategorized Tagged With: , , ,
« Older Posts