Sibling Sorrow

“You number my wanderings;”

I wonder which number I am on, God … 140? or more like 2,589,380? Why number them?

“put my tears into Your bottle …” Psalm 56:8

Do You have separate bottles for each cause of my tears?

If so, one is definitely labeled Sibling Sorrows. It should be about full by now, holding my tears for the sorrow I feel whenever I watch pain between my children.

We have amazing children. We don’t deserve them, and can’t thank God enough for their lives. Personally, I admire how they valiantly wade through life muddied by hidden disabilities without giving up. Just this spring they proved themselves again, as young adults, playing crucial roles on the search and rescue team for my husband’s lost mind.  I wish you knew them. (If you’re reading this site, then you know something of what they have weathered.)

But they are human too. And you better believe this journey has wounded them. Some of the defenses they formed, against their confusion and pain,  has caused and continues to cause pain to each other. It hurts me to witness it. When they were young, many times I should’ve intervened long before I did. Now I want to fix it (of course) but can’t. Jesus has brought us a long way, but we’ve far to go. I want each one to really BE there for each other (in healthy ways) so they can experience family the way they deeply long for, and God intended … but

anger at the injustices,

confusion about the causes,

mistrust and fear of speaking up,

disappointments over dashed dreams,

pain seeking a blame,

shame and sins …

all these can trigger them. Then, like an armed heat seeking missile with no target to lock on, the closest target within range often is a………SIBLING, who is dealing with their own pain, and cannot absorb more.

Some don’t rant and rave. They retreat … hiding way inside themselves (or others) seeking safety, til there’s no finding them. I miss them, when they do that.

When I cry out to You

THEN my enemies will turn back,

This I know because

God is FOR me.

Ps 56:9

As for me, I will call upon God, and the LORD shall save me.

Evening and morning and at noon I will pray,

and cry aloud,

and

He       shall          hear          my            voice.

Ps 56:16,17

Just had a comforting thought … (thankyou, Father).

Jesus is also their sibling. So technically, spiritually and family-wise (stick with me here) it’s our kids plus one more. Jesus shoulders being Firstborn for my firstborn, He’s the I’ll-defend-you Brother, their enthusiastic-I-want-to-spend-time-with-you-sibling.  AND He is completely healthy emotionally and spiritually — so He can take whatever they give Him without hurting them in return. In short, He is everything they can’t find in each other. He’s the perfect brother, who can and will always show up (no excuses), invest (no matter the cost), listen (with undivided attention), inspire (by example), be patient and kind (in attitude and word), pour life giving words into them when they lose hope, serve (their smallest needs) — and do it all because He is so overwhelmed with LOVE for them (not because He must)….

Thankyou, Jesus. We really need You.

Joan

The Things That Really Matter

Something about a hospital seems to force our gaze toward the heavens. There are chapels. There are atriums – lofty and airy, driving skyward in a cathedral of glass and steel. There are anxious faces, tapping fingers, pacing feet. Perhaps it’s the recognition of the fragility of our bodies that reminds us of how we are greater than our mechanical parts, but not their author. It could be that we are forced to reckon with our loss of control as we’re hooked to a monitor, or waiting for a loved one’s safe return from surgery. We are reminded of how much we need SOMEONE bigger than us to fix it.

“Please,” we breathe into clasped hands. “Please, let it be okay.”

Soaring spaces at 6:10 a.m., hope sent heavenward.

My husband’s ebullience at the beach nearly two months ago cost him his shoulder. Two fractures, one bone chip, two torn tendons and a dislocation later, I’m sitting at the cafeteria in Union Memorial hospital in Baltimore, shaking my head over how an incident that came on so effortlessly (jumping into a wave during a family vacation) could become so very complex. After surgery, Matt will be in an immobilizer for six weeks – needing someone else to do almost everything for him. Then, he will begin a relatively grueling physical therapy regime that, if he’s lucky, will return him to pre-accident status in about six months to a year. All because he jumped in the ocean.

Matt spent a lot of time being angry after the accident. No one would begrudge him that. (In truth, “angry” could be too kind a distinction. “Raging,” “stiff-necked,” “irrational” and “vitriolic” would all serve similarly here.) Why would God intend a family vacation to end that way? Why couldn’t the water have been deeper, the wave higher? Why a dislocation AND all the associated injuries? Matt’s shoulder injury was just one more thing on an already long litany of crises to deal with. We were over it. I was over the moaning and whining, too. Though that’s another post.

But who were we to be mad? Did we profess to know better than God did as to what purpose this ridiculous health detour served any of us?

“Don’t be impressed with your own wisdom. Instead, fear the Lord and turn away from evil. Then you will have healing for your body and strength for your bones.” (Prov. 3:7-8)(NLT)

Matt and I are both desperate for healing. Body and soul are broken and weary. God showed me today (as He often does when I sit down to write, and not knowing where He is, find Him in the words that very nearly pen themselves) that our frustration was just an expression of our own wisdom. Trusting God, giving him our hearts by accepting His plan and moving on, cleared the pride from our eyes and showed us what really matters.

What really matters is not how many doctors you have to see before you find one that gives a rat’s you-know-what about your condition, but what you say to your husband in the OR waiting room, and how his hand feels in yours as you pray together for the surgeon’s steady hand and a safe return from anesthesia. What really matters is not the circus you need to coordinate to get the kids to school and still make it to the hospital by 6:00 a.m., but the bleary-eyed face greeting you receive from under a blue hospital bonnet, and an eventual grin that shows up from underneath the freckles.

What really matters is what God REALLY gives you when he gives you a disability – that dose of patience, that modicum of insight, some gratitude, more kindness, or the perseverance to get up and face the day when you’d rather make a tent out of your bed sheets and permanently move inside.

What really matters is what God plans to do with your disability, too. That kind of stuff is bigger than our wisdom, and always enough to heal the bones.

- Sarah

Future Chef

Me: What are you going to do when you get to college and I’m not there to cook for you?

Dan (18, autism): I don’t know.

Me: Are you going to starve to death?

Dan: NO.

Me: Then what are you going to do?

Dan: I don’t KNOW.

Me: Well, how about if I start teaching you how to cook some of the things you like to eat so you won’t starve to death?

Dan (anxious): No, Mom, I can’t learn all that!

OK, Lord, what do I do now? How do I get past this roadblock, this drawbridge-up, moat-filled fortress of his? Arrow-prayer coming Your way!  Ah, baby-steps, thank You!

Me (breaking it down to bite-sized pieces): How about this? What if we took ONE THING you like to eat and spend a WHOLE MONTH learning how to cook it? Then we could go on to another meal the next month. Is that a good plan?

Dan (tenatively): I think so.

Me: Well, August is almost over, how about if we start in September with just learning how to cook one thing that you like?

Dan (fearfully): O-kaaaaay.

And to put this plan in motion, all I have to do is ask him a couple of times this month, “What are we going to start doing every month in September?” And The Plan will come out of his own mouth. And you know what, that first week in September I will get no argument, no fussing, no stonewalling, because he acknowledged there was a problem and we agreed on a solution together.

Welcome to parenting an adult, Peggy! This is new territory for me, but not for my heavenly Father, who loves both of us to death, and is the best Parent of all.

 

~ Danz Mom, Peggy

We’re Not Moving!

I had a conversation about moving with Stephen today. We aren’t moving, but unbeknownst to him, I had been contemplating it recently. As we were picking his sister up from her new school we passed an apartment complex that is two blocks from the school. I asked him, “How do you think it would be to live there?”

“Why? It kind of reminds me of our house, the way it looks.” he said. As we passed by the pool I commented that it had a pool, but he was unimpressed. He then began to argue that we needed to stay where we are because we needed the space and because he likes our house.

Never mind that we now spend over an hour in the car every afternoon from the time I pick him up from school until the time she is dismissed and we get home. Never mind that he loses out on time he could be doing his homework or other things he would like to do because we are sitting in a carpool line for thirty minutes waiting for her. His argument is that he has lived in our house almost all of his life and his sister has lived in this house all of her life and we don’t need to move.

Besides, he said, he doesn’t want to live in an apartment, he likes living in a house. I asked him what he is going to do when it is time for him to move into a dorm for college. He said he didn’t know or that maybe he would live at home.

There are times and days when I feel like we have come so far, and I know that we have. Then there are days when we have conversations like these that make me wonder what characteristics are intrinsically part of Stephen? What can be taught or conditioned away and what is just a part of him down to the core of his being? What is Asperger and what is the personality and nature of Stephen and where do the two separate and where do they become one? I have read a lot about personalities and Aspergers, but there is still so much I have to learn about what it all really means. I pray God will give me the wisdom to parent Stephen the way he needs to be guided and taught according to the plan God has for his life.

May my parenting prayer always be, “Your kingdom come, your will be done, on earth as it is in heaven.” Matthew 6:10

 

Clean Your Room!?

I am trying to organize and clean up my home and I need my children to help me.  Is this not the cry of most mothers?  I struggle to understand why I can’t tell them to clean their rooms and they will go and actually accomplish this task.  To me it is so simple.  So I asked my 21-year-old daughter (ADD/OCD) what goes on in her head when I ask her to tidy her room.

This is what she told me: “Every book has a specific place on the shelf; however I do not organize them alphabetically, solely because of the various sizes and shapes, it would bother me more; but they do have specific spots on specific shelves and must go back in those exact spots. DVDs, unlike books, do not have specific spots, but I arrange them by color. If the binding on the DVD is white, or a light color,  it doesn’t go beside another DVD with the same color binding. It goes beside a darker colored binding. Clothing in my closet, is organized by short sleeves, sleeveless, work shirts, casual (around-the house) t-shirts, hoodies, tank tops, work pants, and then finally, dresses and skirts. Then each of these categories is further organized by how often I wear the clothing items, most often to least often. Store receipts in my desk drawer are organized by store, and then by date, in a small file folder. ”

Okay so that sounds pretty organized but what about all the papers on the floor, bags of various items stuffed in corners and clothes in piles on a chair?  There is a disconnect between what clean means to my children and what it means to me.  I am trying to learn how to break down this task into jobs that the children can accomplish and will make a difference in their rooms.  Since I am naturally organized I don’t really think about the cleaning that I do as I am doing it.  So we begin with dialogue to try to understand each other and communicate effectively.  The ADD is hard enough to work around but her OCD is enough to send me screaming “Please don’t tell me it hurts my brain too much”.

Lord give me wisdom and patience.  Help me to teach my children the skills they will need to be self sufficient.  I need to learn a balance between helping and enabling.  You know all the inner thoughts of my children and what their true needs are.  Thank you for the unique individuals that you have blessed me with the challenge of parenting.  What a privilege and honor I have been given to be their mother.  May all that we do in our home bring glory to you Father. Amen

~ Twyla

Beachcombing

We started our summer months with a trip to Fort Walton Beach, Florida, my hometown and where my folks still live. We didn’t go for vacation, really, but we did visit the beach while we were there. I waded in the surf, scooping up handfuls of sand and praying, “Please, Lord, just one sand dollar. Like last time.”

“Last time” was a day in my childhood when I found ten sand dollars in one day, each quarter-sized and completely whole. Whole intact sand dollars are an uncommon treat in the Gulf waters.

I found a sand dollar on this recent day, too—tiny, but perfectly whole. It’s in my treasure box now, with other items which remind me of special moments with Jesus. He answered my prayer.

Three weeks from now, we’ll head to Florida again, just a few hours east of Fort Walton Beach, where we’ll spend a week with Michael’s family all together in one beach house. Because I grew up on the Gulf of Mexico, the beach was usually a backdrop for my life, not a destination in and of itself. I’ve never spent a week at the beach to just be there.

All this beaching calls for some poetry.

beachcombing

I.
a shell
is a skeleton really

the old discarded body
of a creature who has either
died or moved out

the hard ridges on the outside
contrast the luminous
pearl lining
the rough exterior hides
a soft spot

some crunch, some clink
some mimic the sea’s sound
“Mommy, I heard the sea today. . .”
an auditory illusion
that gives certain comfort

preservative and decay
in the same whiff
some like salt
some like fish

I wonder what a shell tastes like:
“Our specialty of the day is
shell soup.”
the sea or the sea food?
the salt or the decay?

“With or without crackers?”

II.
the sun creeps

steadily toward its sleeping place
sandpipers race
in and out of the shore’s embrace
their fragile feet
keeping pace with the surf’s cadence

snow-bright grains
disguise the sand dollars
I venture out
among the kelp and driftwood
scooping up handfuls
of debris from the changing gulf
searching for the circlets
ankle-deep in the gritty water

shells crunch beneath my toes
I walk slowly
looking for only the pretty ones
like brittle white bones
the sand dollar pieces lay shattered
scattering with the tide

twilight washes the beach
with a restless quiet
in the shadows I squint to see
the pieces of treasure in my salt-sweaty hands
broken or whole?

there will be better light at dawn

Hoping your end-of-summer is filled with Jesus treasures,

Cassandra

On Changes, big and small

The times, they are a changin…

Living with hidden disabiities has necessitated many changes in our family.  Many of these changes seem to take effect in the next week or two.

In order to eliminate the travel of my previous job that was taking its toll on my family and on my husband’s health, I started a new job in a completely different industry.   Today was my first day, and my head is swimming!

My kids start public school next week…3rd grade, 6th grade, and 8th grade.  We no longer have the finances for them to attend the private christian school where I’ve worked and they’ve attended faithfully for the past several years.

I am not one to second guess my decisions or regret the what-might-have-beens.  But the sheer volume of changes in our life is overwhelming.

However, the biggest, most life-giving change of all, the one I am most eager to share with you:  I took my therapist’s suggestion and started an exercise program.  I don’t think I could handle any one of these other, larger changes without the physical outlet of exercise.

I want to shout it from the rooftop:  “I feel better!”  In the midst of a crazy, unpredictable season for both me and my children,  I have regained some control and significantly helped my mood through exercise.

Who knew that it would be this easy? (don’t kid yourself; it hasn’t been easy at all!).  But who knew that it could be this simple? I am not writing this blog post to gloat, to motivate others, to make anyone feel guilty (been there), or goad others into cheering me on (though you can if you wish).

In fact, I am ending this post with a letter to MYSELF.  A letter to remind myself how to handle changes, big and small:

Dear Nancy,

I am writing this to you on the cusp of your forty-fourth birthday.  You have had a rough year.  Hidden disabilities and life’s continual changes have left you feeling battered and bruised, overworked and exhausted.  You have sought relief in food, in friends, in family, and in therapy.  You have tried multiple medications to “manage” your moods and your shifting hormones.  But here is the clue … you consistently feel better when you exercise.  Nancy, you say you have no time.  I know that you are busier than everyone you know.  And I know that you don’t particularly  like exercise.  You don’t like to sweat.  But the truth is, you FEEL BETTER when you exercise.  You are less depressed.  You feel stronger.  You feel more in control.  YOU ARE ABLE TO WORSHIP GOD more fully.

Keep it up, Nancy.  Exercise.  It will clear your mind.  It will clear your heart.  It will position you to love the Lord your God with all your heart, strength, mind, and soul.  It will position you to move faithfully in a season of many changes.

As our family moves into a new season of changes and firsts, new environments and changing relationships, I am thankful to God that I can strengthen my body and strengthen my mind to help prepare me for these many changes to come.

Hebrews 12:1 – 2: Therefore, since we are surrounded by so great a cloud of witnesses, let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us, 2 looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God.

Nancy

At the Ready

What strangeness must fill one’s life, to be at all times perched on the edge of action. How exhausting it must be for those whose disability can be defined by anxiety, for they are always vigilant, always striving, never at rest. How very tired my Noah must be.

Noah has taken to locking his door at night – a habit I despise, because, as I’ve told him, I can’t get to him in a hurry. He is a “hider,” and a trickster. And it’s not beyond him to lock his door for the sheer petulance of it as he snickers to himself from under the bed. More recently, this habit is a defense against his brother’s nighttime wanderings. Jesse’s preferred destination at 2 a.m. is Noah’s top bunk – with his head mashed into Noah’s ribcage. To say this annoys Noah might be like saying the Titanic was a dingy with an ice cube problem.

Today was the first day of school for Noah and Grace. I went to Noah’s room where, as per usual, the door was locked. With Matt traveling, garbage to take out, dogs to be fed, and three kids to get dressed and out the door, I was in no mood for it. My light tapping was replaced with heavy pounding and a caution about all manner of privileges that could be lost if he didn’t open up RIGHT THAT INSTANT!

Noah came bleary-eyed to the door in a rumpled school uniform.

“Noah – you’re dressed already?”

“Yeah. I slept in my clothes last night. I was worried we were going to be late.”

Noah was at the ready. Preparation was his defense against being caught unaware, of having to “catch up,” of losing the blessings that might be present in a more serene morning. Noah’s readiness protected him (and his mother) from a tardy slip. Ordinarily, I would instruct him that he shouldn’t have to be uncomfortable to ensure our promptness, and that the nighttime uniform was unnecessary. Today, I breathed a quiet sigh of gratitude. He’d actually helped our family get ahead.

Noah’s anxiety is a torment to him – and to us as his parents. He cannot let down. Someday, we will find a more effective solution to easing his ongoing angst about everything from choosing the wrong ice cream flavor to losing his Nintendo game cartridges. But from his preparations today, came this reminder: “You also must be ready all the time, for the Son of Man will come when least expected.” (Luke 12:40)(NLT). I need not be anxious (Philippians 4:6), but I ought not to be lax, either. I get one shot. What comes after this life is what I’m really prepping for.

Knowing it fuels Noah’s anxiety, I will prevent this kind of pajama game as much as possible in the future. Unless I think I might be very, very late. Then I will lay out his uniform, tell him to wear what he wants to bed, and close the door with a wink.

- Sarah

My Happy Place

Me: This traffic is the pits! Daddy calls this “slinky” traffic, when we speed up, slow down, speed up, slow down.

Dan (18, autism): I know how to help you so the traffic won’t stress you out.

Me (surprised!): You do??? What’s that?

Dan: Go to a happy place in your mind, and you won’t be stressed. My happy place is on the stage of The Price is Right.

Bad Mommy thinking: Here we go again. Blah blah blah about gameshows.

Dan: What’s your happy place, Mom?

Wow. Once again, he breaks out briefly from his world and interests, and intersects purposefully with me and mine. And I answer, “Here’s my happy place”:

 

 

But really, it’s this moment, right here, right now with you. I wish I had said that.

 

~ Danz Mom, Peggy

Time to Think about College?

Andrew outside his dorm building

It has been a big weekend in our household. We took our second oldest to college. It wasn’t a big move, mind you. He will now be living 20 minutes away from home in a dorm. Less than ten minutes from his dad’s office. They already have lunch plans for Thursday. But, he has moved out just the same.

It was strange those first couple of nights going to bed knowing he wasn’t home and not leaving the porch light on for him. It is odd seeing his empty room every time I pass by going up or down the stairs. He is planning to come home on weekends to wash clothes, so I know I’ll see him frequently, but it is still such a rite of passage for him to be officially not living in our house any more. We are now a household of four (down from seven at our highest point) and I’m still adjusting.

Even though Stephen is only a sophomore in high school now, all of this has caused us to start thinking ahead to when it is time for him to head to college. Change is so difficult for him because he has Asperger’s Syndrome and anxiety. It takes him much longer to make decisions — big ones and little ones and he wants to make sure that he is making the right decisions (I can empathize because I agonize over decisions as well). And then, after the decision is made it takes longer for him to adapt to change.

I can see that it would be beneficial to create a plan that involves making advance visits to the college campus to:

  • talk with professors in his field of interest
  • check out the living situation (if he would be living on campus)
  • take a tour of the campus
  • explore the campus life and activities on our own

While school visits of this sort were not as important to our older son in selecting a college, I can see where they would be of immeasurable importance to Stephen in helping him and us make a decision about where he would want to spend his undergraduate years. And the time to start thinking about such things is now. Well, maybe not now, but maybe after he finishes his Geometry and English homework….

Then again, maybe I should do some homework and find the schools that are more receptive to students with AS and that might narrow down our search a bit. There are even schools that offer programs for students to live on-campus for a brief time during the summer between their high school junior and senior years. If you have had any good experiences in the whole college search process while dealing with AS (or other LDs, for that matter), please feel free to pass them along. Maybe together we can create an ongoing resource for parents of colleges and universities with programs and services for students with particular learning disabilities and differences.

Louise