7 Ways to Deal with Daily Time Bandits

Have you ever heard the adage “We all have the same 24 hours in a day...it’s all in how you choose to use them”?

As a parent of a child with physical or cognitive disabilities, this can feel like a slap in the face. We don’t necessarily have a choice about how we are going to use our hours. We accommodate our children’s needs for physical care. We give our children the time they need to process and carry out instructions. These things cannot be hurried.

Last week a friend and I were commiserating about how time-consuming physical disabilities are. Sure, there are the big time-gobblers that come with the territory, like IEP meetings and endless doctor appointments.

But even more than that, there are day-to-day time thieves related to disabilities that steal away tremendous minutes. Every day. Day after day. Month after month. Year after year.

Moms of able-bodied children can direct their kids to complete their own care. Kids may not be  definitely are not quick when they are toddlers but there is the hope that things will speed up as the kids mature.

This isn't necessarily true for kids with disabilities who will grow to become adults with disabilities.

Let’s look at just one example. When the mom down the street needs to run errands, she can instruct her kids to grab their shoes and coats and meet her at the car.

Moms of kids with severely physically challenged children go through an entirely different process:

·        Check and replenish bag of travel supplies (5 minutes)

·        Put on AFO’s and shoes (5 – 10 minutes depending on the style)

·        Put on child’s coat (2 minutes)

·        Load child into wheelchair and walk outside (2-3 minutes)

·        Unload ramp or lift-up seat, secure child or wheelchair, reload ramp or lift-up seat (5 – 7 minutes)

·        Load wheelchair, if using lift-up seat (1-2 minutes depending on how many parts you have to remove)

·        Stop to recover breath if said wheelchair is over 30 pounds. Most standard wheelchairs are. Dust road grime from the wheelchair tires off your clothing (1 minute)

·        Go back to the house for your own coat and purse, DOUBLE-CHECK THAT YOU HAVE YOUR KEYS (2 minutes...infinitely longer if you have forgotten your keys)

Hmmm. It takes 20 – 30 minutes just to load up the car. This assumes the child doesn’t need to return inside to use the toilet. This happens.

And that’s just loading the car. What about dressing? Bathing? Toileting? Eating? Homework? The list goes on, and those extra 10-, 20-, 30-minutes add up fast.

How do we respond to this?

1. We commiserate with one another. It feels so validating to talk with other parents facing the same challenge of how to fit everything into the day. Our 24-hours are not our own. You and I are not the only people who truly don’t have discretion over how we will spend all our hours. Sometimes it’s nice to know you aren’t paddling the boat alone, isn’t it?

2. We streamline whenever possible. It’s helpful to keep a well-stocked backpack in the car with all the items you might need away from home. Our family keeps a change of clothes, an extra jacket, extra toileting supplies, spare g-tube extensions and an extra bolus syringe in the car for emergencies. To remind myself that something needs to be restocked, I toss it up on the passenger floor so I’ll see it when we’re unloading.

How else can you streamline your day? Can you organize your feeding or toileting supplies in the room to reduce backtracking and unnecessary steps? Can you purchase frequently needed supplies in bulk? Can you set out clothes and school items the night before?

3. We give ourselves extra leeway. Our families don’t operate on the usual timetable, so it does no good to try to squeeze into typical standards. While our destination may only be 10 minutes away, accept the need to start loading the car 30 minutes before we need to be there. Don’t fight it; go with the flow.

4. We are gentle on ourselves. We can’t get everything done in a day that needs to be done. But if, at the end of the day, our families tuck into bed safe, fed, clean and happy, we have accomplished something amazing. Be proud of your accomplishment. Do not allow the things left undone to steal your joy.

5. We MAKE time to do things that renew us. This does not happen automatically. No one is going to carve 15 minutes out of your day for you to do the things that refresh you. YOU must do this for yourself. You need this. Force yourself to find a way to grab a few minutes with something you love, whether it is time with a good book, time in your sewing room, time to relax with your spouse or in a bubble bath, time to train your goats...

There’s a corollary here that might help you locate a few minutes. It’s good to know everything you can about your child’s disability. Just be aware that you can lose yourself in researching the condition and its treatments (just ask how I know this to be true), especially online. It can be very helpful and quite fascinating, but hours can fly by without you realizing. Set a timer.

And when that timer goes off, take those 15 minutes of personal renewal. Please. You will feel so much better for it!

6. We learn to prioritize our commitments. We have to make what little discretionary time we have in our days count. Count Big. Count Big for the things we are personally vested in. Save the precious moments you do have left for the things that matter terribly to you.

I’ve heard moaning from several places about the noticeable lack of participation by special needs parents on school PTSA boards. Um, excuse me. Not only does our child with disabilities – and the rest of our family – require our time, but according to our life goals, the PTSA book sale may just not come up on top. Great if it does! PTSA is an excellent organization with good goals. But if it’s not a personal priority, we don’t need to feel obliged to make excuses.

We do not need to feel guilty saying “no.”

7. We learn to embrace our slow pace. I’ve told you earlier about my wise mentor, Vicki. Once when I complained to Vicki about how long it took to get through the basic routines of our day as I struggled with all my daughter’s “baggage,” she gave me a lovely piece of advice.

“Rose-Marie,” she said, “being forced to slow down is a gift. When you have to move through life slowly you will learn to see things you would have raced past before. Having to slow down allows you to savor life.”

Don’t you love her?

Several years later, Vicki’s daughter died unexpectedly. In one of our conversations when I asked how she was coping, Vicki said, “Something awful is happening. I am starting to hurry again like the rest of the world. I am forgetting how to live slowly...and it is terrible.”

There are days I struggle to remember that my slow pace of life is a gift. And Vicki is right. We may not accomplish as much in a day as our neighbors, but we have seen the small miracles.

We have given our children comfort and assurance. We have tangibly demonstrated love by our patience in accommodating their needs. Our actions show our children that they are precious to us. We have time to delight in these remarkable young people.

The hurry in life doesn’t matter; it doesn’t leave anything to show for itself but stress and gray hair and speeding tickets.

While I'm excited for what awaits on the other side, I’m in no race to get to the end of life. I might as well enjoy the scenery along the way. My child is teaching me this gift.

How about you? What advice can you share about living days where not all 24 hours are left up to your plans?

Why Does God Allow Suffering?

Why does God allow suffering?

As parents of children with special needs, it’s an in-your-face question that we wrestle with. It’s hard to ignore.  Regardless of the issues our kids face, we ache to watch them suffer. If they must struggle, we’d like to at least understand why.

It’s such a huge question. Theologians have struggled with it for centuries. I’m not going to come up with any earth-shattering insights…I just bumble along like everyone else.

I’ve certainly asked why a million times. Why would God allow an innocent child to suffer pain? Why would He allow my baby to suffer?

I’ve asked a thousand variations…why would He allow my child to be robbed of speech? Of her ability to chew? Or to use her hands? Or to walk? Why must she hurt? Why must she have seizures? It isn’t the medical explanations I’m talking about, it’s the soul-gripping why.

I don’t have the answer. But when I quit focusing on the question of why, only then am I able to see tiny bits of the puzzle more clearly.

Maybe it’s just me; maybe it’s more universal than that. Maybe you see yourself in this too?

The problem with why is that it centers my attention on the hurts, on the worries, on the things that have gone wrong. I get so caught up in the problem of suffering that I can’t see past it. When I hang on tightly to my obsession with why, I can’t let go of it to grab God’s hand.

When our daughter rapidly lost her early skills and she experienced pain that we couldn’t identify at that point, it was terribly hard for me to let go of the question of why God would allow this. I couldn’t see past the crisis to the fact that He still held us in the palm of His hand.

But God was faithful to His word. He did (and still does!) hold us in His hand through all the hard times, just as He promises throughout the Psalms and Isaiah in the Old Testament (I was going to list some specific references, but there are so many. If you don’t have a concordance to look them up, you can do a search for "hold me in your hand" through NETBible.org).

I just had to shift my sites from the desire for an explanation of why the Lord would allow our daughter to suffer…to the trust in Him to hold us through it.

Taking my eyes off the problem of understanding why—something we may never know anyway—allowed me to see some of the blessings that have come from our situation. I would not have noticed them if my focus stayed on the question.

                --our extended family has grown closer

                --the overwhelming majority of teachers who have worked with our daughter say she has taught them more about teaching than anything or anyone else

                --we’ve made dear friends in this circle of disability

                --we’ve received practical support (very tough for me) and been able to pass it on to other families…

                --I’ve seen growth in my own character (slow, but coming):  advocacy, acceptance, better calm under pressure, less easily embarassed

                --I’m more aware of areas I need to grow:  patience, forbearing, grace, releasing control

                --problem-solving has become a standard practice for our family

                --we’re taking life a bit slower and savoring each day as it comes

To be quite honest, I hadn’t thought about the question of why in quite a long while. Memories of letting go of that why question came this morning when my alarm wakened me with Natalie Grant’s song, Held. In it, she sings of a young mother’s grief over the death of her sick infant. The words remind us that though there is no explanation when our world falls apart, the Lord faithfully holds us. If you don’t know the song, the words are below. You can hear Natalie Grant sing it here (but caution, have Kleenex handy. It gets me every time!).

Maybe it is okay that we never know why in this lifetime. God has His own reasons for allowing suffering. Surely they are bigger than the little pieces of the puzzle we catch glimpses of every now and then.

But we are held in the palm of God’s hand, and that’s more than enough.


Be blessed in the palm of His hand today.

* * * * * * * * *

HELD by Natalie Grant

Two months is too little
They let him go
They had no sudden healing
To think that providence
Would take a child from his mother
While she prays, is appalling
Who told us we'd be rescued
What has changed and
Why should we be saved from nightmares
We’re asking why this happens to us
Who have died to live, it's unfair
This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was that when everything fell
We'd be held
This hand is bitterness
We want to taste it and
Let the hatred numb our sorrows
The wise hand opens slowly
To lilies of the valley and tomorrow
This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was that when everything fell
We'd be held
If hope if born of suffering
If this is only the beginning
Can we not wait, for one hour
Watching for our savior
This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was that when everything fell
We'd be held
[Repeat Chorus]

* * * * * * *

You might also want to look at Finding Comfort in Psalm 139

Dreams, Disability, and Detours

I have always wanted to live on a farm. Always. I think my dream was born when my family stayed with an elderly gentleman and his wife on a hobby farm in Troffer Hole, New Mexico (a place that, according to the online maps, no longer exists). We had been visiting a family cemetery in this “town,” a place that consisted of just the cemetery and a small handful of farmhouses, and we were unable to find a hotel. This lovely older couple had offered to put six of us up in their home for the night. The farmer and his wife were so friendly and hospitable; if farm living cultivated these traits in people, then I wanted to live on a farm and be that same way. It fascinated me to collect eggs from the henhouse and then eat them for breakfast. The farmer’s wife worked magic in the kitchen with home-baked delicacies…I certainly wanted to do that when I grew up!

In high school, I pored over copies of Organic Gardening my parents had collected. Those years were too busy to work a vegetable garden so I satisfied my gardening urge with a shelf in my bedroom filled with African violets. They grew gigantic and bloomed year round on a bit of daily care, but still, I wanted to mess in real dirt. I used to fantasize about sharing my deepest secrets with a doe-eyed cow during hand milking…call me crazy. I reminisced about those fresh eggs from Troffer Hole, New Mexico.

When we met and married, my husband shared my dream of living on a little farm in the country. We settled, instead, in a quiet small town just outside the suburbs. It was a great place to raise children, but still we longed to move our family to the country. My husband had grown up on a hobby farm and wanted this for his children as well. We hoped and smiled and roughed out a timetable for making this a reality. One beautiful daughter was born; another little life was due to enter this world soon. We were right on schedule!

But then came The Diagnosis. With the The Diagnosis came a host of medical issues and the corresponding appointments, tests and treatments. We weren’t sure what medical emergencies The Diagnosis might include, but we were painfully aware they would be likely in our lives. The idea of living any further from our regional Children’s Hospital than we already were was too frightening to consider, so we shelved our dream. We were officially on our Detour.

At first, living with disability was all-consuming and I didn’t especially miss our dream. I grieved over our oldest daughter’s losses while I worked hard to actively stifle that grief to be present for our children. I tried to get through each day functionally (which, I’ll admit, didn’t always happen well). The practical aspect of dealing with a toddler and a newborn, of handling medical urgencies, of meeting a hectic schedule of medical appointments and therapies, of wrestling with home health companies and insurance and the Department of Developmental Disabilities—you know the drill—replaced the dreams. There wasn’t any spare time to realize they were missing, but there was a quiet longing I couldn’t put my finger on.

Fast-forward ten years. Our daughter’s health issues stabilized to a point where we could manage them without intense intervention. We’d come to terms with our grief and moved into a place of acceptance. We were able to celebrate the young ladies each of our daughters was becoming. Quietly, unobtrusively, our dreams of a hobby farm re-emerged. It was at this point we realized that our life’s unexpected route did not have to mean an end to our dreams...it was merely a Detour. It became very energizing to consider pursuing what we had once planned. The prospect of working towards our Dream brought us joy and renewed hope. Hope motivates…hope can move us to action.

Today I sit typing at the desk in our farmhouse where we’ve lived just over a year now. It feels like we’ve come home. Disability took us for a Detour, but we have arrived at our Dream.

Now, sometimes Detours may cause you to enter your destination from a different angle, and that has certainly been the case for us. We didn’t imagine that a wheelchair would be included in our Dream, nor the need for special access to collect eggs, nor training goats to pull a wagon so our daughter could move across the pasture. We had originally imagined our farm would be just for us, but the Lord has given us a vision for a different direction. Now we hope to open our farm to other families with disabilities at some future time. We’d love to be able to offer respite from the intensity of disability, offering the experience of normal—but accessible—farm living (complete with pampering and some of that farm wife’s home cookin'!). Things look a bit different from the life we imagined, but still, we are living our Dream!

Did you abandon a Dream when your child was diagnosed? I recognize that our children’s needs sometimes mean more than just a Detour; sometimes these needs rewrite our lives. But might it be possible to snatch back a bit of your Dream? There may be ways…it may take some creative thinking, some adjustment to the way the Dream looks, some longer-range planning than expected. But if you can possibly do that, if you can grab hold of that hope in some way, however small, you may find inspiration and wonderful energy.

Clean Cooktops – OR – Managing Situations Without Creating Crises

After a leisurely dinner Saturday night, I carried our plates back to the kitchen to discover a small tragedy on the top of our glass cook top stove. In all its dying splendor lay a melted plastic bread sack that had been inadvertently placed on top of a still-hot burner. Printed side down. The stove is less than a year old; the bag looked to be about a hundred years old in its shriveled, melted state. Not a happy combination for a mother who takes great pride in the spit-polished appearance of her new stove. The rest of the house may be a mess, but this is one thing I am meticulous about.

I froze momentarily as my heart dropped to my stomach. This freeze was nearly instantly replaced with a sense of urgent panic to do something to get that plastic bag off the stove while it was still warm. Then, better sense grabbed hold of me. I took a deep breath, remembering how easily glass cook tops can be scratched, and headed straight for my dear friend Google. After typing in a question about removing melted plastic bags from glass cook tops and quickly looking over half a dozen links to get a general consensus as to the best method (which I will share with you at the end of this post), then I was ready to act.

I wish I’d taken a “before” picture of that melted bag (I wasn’t imagining at that point that I’d be writing this out). Trust me when I say that it was impressive! It extended beyond the edges of the largest burner. Now, thankfully, the cook top looks brand new again.

Look Ma! No plastic!

There is a lesson in all of this. Panic doesn’t help.

If I had given in to my gut-reaction, I would have immediately grabbed up our razor window scraper and scratched off that plastic with gusto, leaving behind permanent scratches looking like pine needles after a windstorm. I would have been a sad, sad woman every time I looked at the stove top. Instead, a deep breath and a little research lead me to a safe and effective solution…and gave me knowledge that helps me relax when if we ever have such a mishap again.

Deep breaths and researching our options apply to managing our children’s situations as well. Panic doesn’t help here either. In fact, in a critical health or educational issue, it can be damaging.

Of course, there are times to act quickly. Sometimes we need to get our child to the emergency room right now. A flaming pan on the stove top would need to be addressed right now.

Not every situation is a crisis either, and it is critical to learn the difference. The melted bag on the stove top was not a crisis; there was enough time (even before the burner cooled) to get advice on how to correct the problem without causing more damage.

When we overreact to situations without taking a breath or getting the facts, we can set our kids up for complications that might have been avoided.

My daughter has suffered from intractable seizures for nearly twelve years. Of course they a bad thing and we want them stopped. But her variety does not compromise breathing or cause immediate brain damage. They are critical, but they do not pose a crisis.

When she first began having seizures, we panicked. We wanted them stopped right now. We raced her to the Emergency Room (endangering ourselves and every other driver along the way) where she was given unfamiliar medications that caused dangerous reactions. She’s a unique case; I’m not suggesting this is how anyone else’s child will react. But in our panicked state, we had trouble sorting out what was going on with her seizures and how the rescue drugs were actually feeding into her problem.

It took standing back, breathing, and collecting information over time (in this case, data on how the rescue drugs actually triggered and prolonged her seizures) to understand the Big Seizure Picture. Our panicked, knee-jerk reactions were creating an avoidable crisis; we needed a calmer approach to managing her seizures. Since that time, we have learned to step back and assess the situation before we intervene. This method of managing her seizures—and other health issues—has prevented some dangerous situations for her.

The same principles apply to situations at school that go awry. About the only crisis at school requiring immediate action is removing children from a burning building. After that, other situations most always allow time for breathing, for getting facts about what is happening, for researching the appropriate way to handle the problem. Pam and Peter Wright, special education advocates, have written an entire book on this very issue, From Emotions to Advocacy. Having taught special ed myself, as well as being the parent of a child receiving services, I can tell you that this deep-breath approach benefits everyone…parents, school teams, and especially the child. Knee-jerk reactions seldom solve problems. Instead, they make enemies (your child is the one who loses most then), they confuse the real issue at hand, they make you look reactionary and unreasonable (and a parent who maintains credibility will be taken far more seriously than one who is perceived as reactionary and unreasonable).

Is it easy to sort out the crises from critical situations? Of course not. That adrenalin rush makes us want to act right now. But there is usually at least time enough to inhale deeply and figure out which you are facing. I have not once regretted taking that deep breath; many times I have regretted not breathing deeply and acting without thinking instead. It’s a learning process. The melted bag gave me good feedback that I’m s-l-o-w-l-y coming along. Much as I don’t want the practice, it does help.

* * * * * * * * * * *

And now, as promised:

How to remove melted plastic bags from a glass cook top (summary of a number of great websites!)…

1. Remove the unmelted plastic from the cook top and allow the glass to cool.

2. Peel away any large chunks that you can.

3. Spray the cooled melted plastic with WD-40 and allow to sit 10-15 minutes.

4. VERY CAREFULLY scrape up the dissolved plastic with a utility knife or razor scraper. BE CAREFUL not to scratch the glass. Wipe off with a paper towel.

5. In the likelihood there is some residue left, wipe the leftover plastic and/or ink with acetone nail polish remover on a cotton ball to remove it.

6. Use a green scrubber pad and dish soap to scrub any residual. I used trusty old Cerama Bryte first, then just dish soap on a wet cloth. Voila!

7. Remind your dear ones to throw plastic bags into the trash or recycling next time, please.

May you never need these instructions...but they are a lifesaver if you do!

Acting quickly does not equal panic. We can perform swift actions without allowing our senses to take leave. Panic robs us of the ability to think clearly; we need a clear head in an emergency.

The Fumbling Things People Say

Any time a group of special needs parents gets together, the topic of conversation will eventually turn to The-Stupid-Things-People-Say. I’m not sure why this is such a popular topic; it ranks right up there with “poop” and “meltdowns.” We spend whole evenings sharing the most outlandish remarks made to us by strangers with regard to our situations. We try to outdo one another with the absurdity of a particular comment we've received. It's a curious pasttime.

And frankly, it bothers me that we assume the worst in people.

We need to give The Public a little more credit. Seldom are the comments intended to be mean or insensitive, they just come out sounding that way sometimes. I honestly believe (yes, call me Pollyanna) that the majority of people are trying to reach out to us. They recognize that we deal with plates heaped higher than the average parent. They are simply trying to offer some encouragement. What comes out of their mouths may be floundering or patronizing or downright ridiculous, but it is generally offered with a good heart.

We can choose to take offense at the words or to see past the clumsiness to the spirit of the offering. It’s up to us.

Think how awkward it must be for strangers to speak up—they don’t know what to say, what would be helpful to us. They want to express empathy somehow and so they say the first thing that pops to mind. I’m sure plenty feel quite embarrassed as they hear those fumbling words stumble off their tongues, wishing they had eloquent words instead. But they tried and we need to appreciate that.

I like to think about the possible motives that move people to break out of their comfort zone to offer support to a strange. What drives them to speak?

·    They want to acknowledge that “this wasn’t our plan.” The wheelchair, the orthotics, the communication device, the cleft repair, the various tubes and cannulas, and the seizures are not part of the dreams new parents hold dear. Many strangers have shared these idyllic dreams and are probably able imagine that our expectations have been severely jolted. That recognition over the unfairness of disability strikes at people’s hearts. Out of genuine kindness, I believe, they hope to express their empathy. There are times I don’t want to be alone in remembering that things didn’t turn out as I had expected. For some warped and unexplainable reason, it just feels validating to have others acknowledge that I am surviving a pretty big adjustment…and am doing a doggone good job at it, too.

·    Our situation may make them truly uncomfortable. Words come out sounding especially ridiculous when we feel ill at ease (Remember being humiliated by the dorky things you said in front of your Middle School crush? How many blundering comments at a job interview have you wished you could suck back in?). We need to give people credit for moving one step closer to their source of discomfort instead of turning away. They are doing this for us so we won’t stand alone in a situation that they perceive, wrongly perhaps, as uncomfortable.

·    They may be a parent or relative of a child with disabilities themselves. These unknown insiders may genuinely relate to our challenges and want to make a connection. But what 3-second snippet can anyone offer a stranger to share the depth of all that goes into loving and caring for someone with disabilities? No single sentence can do that. What comes out instead sounds trite or patronizing even to the speaker. Of all our Public Commenters, these people probably feel profoundly embarrassed at their inability to create a meaningful comment.

We need to cut a little slack, extend a little grace. We don’t know the history of these strangers. I choose to believe that most comments are made from well-meaning hearts. And honestly, if the roles were reversed, I doubt I could say anything more tactful.

I appreciate when people make comments and ask questions. The connection is comforting to me, because I like that people are trying to come alongside me, however awkwardly, however briefly. Thank you, kind stranger, for walking my way.

My Wakeup Call

A few weeks ago I got a wakeup call. No, not the 6-o’clock-get-your-lazy-bones-out-of-bed call. This was a phone call from my new doctor to get my cholesterol under control…now. It came as quite a shock, as my cholesterol levels have always tested better-than-optimal in the past, and now this doctor wanted to put me on statins the very day she received my test results.

I’m a person who avoids medications like the Plague. You know the type—a diehard who chose natural childbirth without pain killers because I didn’t want to put any drugs in my body that might impact my babies. [Okay, to be truthful, I’m also a huge wimp when it comes to needles, and I just about passed out when our childbirth class instructor showed us an epidural needle]. I’d rather tough out a headache than take an aspirin. I’m mortified to admit how many medications my daughter has had to take in her lifetime for her health issues, but certain critical situations require that you give in. Not that I acquiesce without a fight and countless hours of research...

Needless to say, I refused the statins until I had a chance to bring my cholesterol down naturally, through regular exercise and dietary changes. I'm not sure why the doctor jumped straight to a prescription; it's possible she was considering the time I devote to my daughter’s care and figured it might be easier for me to commit to simply popping a daily pill. Any of us raising families know how hard it is to fit daily exercise and careful meal planning and cooking into our hectic days. Those of us raising kids with multiple disabilities become especially masterful at putting ourselves last on the priority list. We are so busy taking care of the health needs of our kids that our own fitness routines take a back seat…a dangerous place for the driver to sit!

We’ve all heard the airline safety spiel of putting on your own oxygen mask before helping your child with theirs. In fact, we’ve heard it so many times that the line has become cliché. The premise makes logical sense. Implementing the theory in daily life, however, seems nearly impossible. Our kids’ medical needs (and therapeutic and educational and social and fill-in-whatever-else-fits-your-child needs) loom huge overhead. They direct our days and keep us awake at night. The needs demand so much of our time and energy, there truly isn’t any left over for us to do the things we need to take care of our own health.

But…can we afford not to practice the habits that will keep us in excellent health? I had thought so. I let my habits slide (washed down by a decadent Pumpkin Spice latté grabbed on the way to physical therapy), reasoning that I simply didn’t have time to keep up an exercise routine or healthful eating. It was convenient to ignore the possibility that my health might deteriorate as a result. But when the call came that my cholesterol levels put me at risk of some very serious complications, it hit me with sudden, unexpected force that I had even less time to get sick. This seems obvious but it took a scare like the reality that illness—or worse—could happen to me to jolt me to action.

In the weeks since that phone call, I’ve been faithfully exercising each day and eating a healthful diet. I’m determined to lick this cholesterol without medications. Surprisingly, it hasn’t taken as much time from my schedule as I had believed it would. I just tear myself away from the computer half an hour earlier in the morning to work out. That isn’t so bad. Planning nutritious menus requires a bit of extra time, but cooking healthful meals doesn’t actually take any longer than preparing artery-clogging ones. I find that these healthy patterns give me increased energy in the day and blissfully restful sleep at night. Being more alert and less sluggish allows me to get more done in the same number of hours, so the time spent exercising and planning menus pays for itself…and then some. I find the stress relief of exercise to be a tremendous benefit as we deal with my daughter’s uncontrolled seizures and wade through extremely difficult treatment decisions. The silly thing is I’ve known all these benefits in my head as long as I can remember; why did it take this shock to rattle me into accepting them?

All these benefits from eating right and working out help motivate me to keep up these habits. What was prompted by fear of long-term consequences has turned out to have strong day-to-day rewards as well. I feel much better, have a clearer head and have more stamina to keep up with the daily demands. These perks alone merit continuing the changes in my behavior. And hopefully, when my cholesterol levels are rechecked in another few months, we’ll see a positive impact on these numbers as well.

I realize we are all insanely busy parents, trying to keep up with medical treatments and appointments and therapies and school meetings. Where in your busy lives can you carve out a bit of time to care for the person who cares for your child—yourself? Can you afford not to?

No crystal balls

Have you ever wished you could see what the future would bring for your child? Will she be one to sing "neener-neener-neener" to her diagnosis? Will things crumble and leave her in a place you don't dare let your mind wander? We probably all wonder these at times...but do we truly want an answer?

I mentioned to my wonderful mentor Vicki soon after my daughter’s diagnosis that I wished I had a crystal ball so we would know what to expect down the road. She had just turned two and I was mostly thinking of practical things—what equipment she would need through the years and whether or not our tiny house should be remodeled to accommodate it. Vicki's response surprised me and her words etched themselves indelibly on my memory.

Vicki drew in a long breath and looked me in the eye. “No. No, you don’t really want to know the future. And here’s why.

“If you saw that things weren’t to turn out as well as you'd like, you’d be sad and feel hopeless. If you were caught up in sadness over what is to come, would you be able to enjoy the good you have now?

“And if the picture of the future was to be better than what you expect, you would be impatient for it to get here. You would miss the importance of the little steps it takes to get to that place and forget to celebrate those tiny miracles along the way.

“No, learn to appreciate today. Enjoy your girl for who she is today and let tomorrow take care of itself.”

Wise words from a wise woman! They caused me to adjust my sights from the future to today. Of course we still hope for a good tomorrow; we work to bring opportunities that will have our daughter ready for tomorrow and to have tomorrow ready for her. We expect good things and work to make them happen.

But we focus on today. We appreciate how hard our girl works to practice a skill today. It might lead her one step closer to her goal…or it might be gone entirely when she next wakes. That is the nature of Rett syndrome. But today she works hard, and that is what matters. We cheer, with gusto; she smiles and enjoys pride in her best effort. We soak up all the wonder of today and hold it precious in our hearts.

If today is a rough one (and I’ll admit, now that I’ve tucked everyone into bed at our house, seizures made it a bit jagged around the edges), that doesn’t doom tomorrow. Today is just one day; we shake off the bad and go to sleep hoping for a good day tomorrow. Even a series of rough todays doesn’t mean we’re sliding into an impossible pit. We live one day and jump right into whatever tomorrow brings.

For all our kids, may today—and tomorrow—be cause for celebration!

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More like this here:

Dreams, Disability, and Detours

Finding comfort in Psalm 139

Psalm 139 has faithfully carried me through hard times and celebrations. With delighted anticipation, I read Psalm 139 nightly to the children growing in my pregnant belly. I read it to my daughter A when Rett syndrome began stealing her skills and I needed a reminder that God is truly in control. At her diagnosis, I read it with her as more of a prayer to build my faith in God’s control. I still read it often when I need to hear God’s promise of His deep caring. I insert A’s name to remember how precious and perfect she is. There is a design to her life that I don’t need to understand (a good thing, since I don’t see the bigger picture) and that design is flawless.

I find myself clinging to Psalm 139 for comfort and promise right now.  Uncontrolled seizures--again--compromise A’s skills and alertness. It's a tough time for her and so for me as well, sharing her pain by proxy and suffering my inability to kiss the hurt and make it go away.

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 Psalm 139

¹O Lord, you have searched me and you know me.

²You know when I sit and when I rise;

You perceive my thoughts from afar.

³You discern my going out and my lying down;

you are familiar with all my ways.

⁴Before a word is on my tongue you know it completely, O Lord.

⁵You hem me in--behind and before;

you have laid your hand upon me.

⁶Such knowledge is too wonderful for me;

too lofty for me to attain.

⁷Where can I go from your Spirit?

Where can I flee from your presence?

⁸If I go up to the heavens, you are there;

if I make my bed in the depths, you are there.

⁹If I rise on the wings of the dawn,  

if I settle on the far side  of the sea,

¹⁰even there your hand will guide me,

your right hand will hold me fast.

¹¹If I say, “Surely the darkness will hide me,

and the light become night around me,”

¹²even the darkness will not be dark to you; 

the night will shine like the  day,

for darkness is as light to you.

¹³For you created my inmost being;

you knit me together  in my mother’s womb.

¹⁴I praise you because I am fearfully and wonderfully made;

your works are wonderful, I know that full well.

¹⁵My frame was not hidden from you,

when I was made in the secret place.

When I was woven together in the depths of the earth,
¹⁶your eyes saw my unformed body.

All the days ordained for me

were written in your book

before one of them came to be.

¹⁷How precious to me are your thoughts, O God!

How vast is the sum of them!

¹⁸Were I to count them,

they would outnumber the grains of sand.

When I awake,

I am still with you.

                                             New International Version

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What verses bring you comfort when your child is going through a rough patch? Does one stand out for you as being especially helpful?

Adapting...to the Alphabet Soup

What a busy week that has called for some major adapting! We've had an EEG, an IEP, worked with the SLP on some AAC reports...and for some letters unrelated to disability, our DSL was down temporarily.

So how have I kept my head above water? I've had to adapt my schedule and my expectations to deal with all this Alphabet Soup of acronyms. You'll notice I haven't been blogging. My house certainly isn't ready to entertain pop-in visitors and my family has been eating "semi-homemade" meals rather than ones made from scratch. I've had to choose between brushing my teeth or flossing them (brushing always wins out, not to worry). But everybody is healthy and fed, on time to their appointments, dressed in clean clothes and holding it together. When the alphabet jumble heaps up, that's enough to ask for.

To add one more thing to the mix, our weather has been unexpectedly gorgeous. This means the outdoor chores related to the garden (harvesting and processing the last of the summer veggies and getting the beds ready for winter) have been calling. Relentlessly. I have a choice to let this stress me, because it's another demand on my time, or a choice to find solace in this quiet retreat away from the hodge-podge of appointments and meetings. Life is what you make it; I choose to find this distraction and exercise a comfortable place to leave the Alphabet Soup behind.

Launching "Adapting Creatively"

Today is the day! After years of contemplating an adventure into blogging, I'm lacing up my boots and jumping in with both feet.

So why Adapting Creatively? Our family is all about adapting. When our daughter A was diagnosed with Rett syndrome in late 1997, just months shy of her second birthday, our world turned upside down. Or did it really? Had our deepest goals really changed? Were we, including our daughter, truly any different than we had been before her diagnosis? As soon as we raised our heads above the dizzying emotions, we realized that deep down, we were still the same people with the same dreams. We may have become battle-worn and the path to our goals may have been routed differently, but the deepest core of who we were--each one of us--was really the same. We had to adapt to the unexpected, and that would take some creativity. We would need to adjust our attitudes, our expectations, our time. We would have to apply our "technical skills" to meeting unexpected new needs. That was going to take some creativity...but we could do this.

So, what kind of creative adapting will you find here? Lots! The ideas focus mainly on the issues we deal with daily:  severe motor impairment (fine and gross, both), non-verbal communication, daily living and simplifying caretaking, accessing the environment, recreation, schooling, attitude and outlook. With my background as a special education teacher, curriculum adaptation is a passion for me. Because I also spent a number of years teaching in general education, I'm also passionately involved in ways to involve children with disabilities in regular classrooms. In meaningful ways, I might add. Years of participation in our regional AAC professional group has taught me how to apply what I know of child development to the development of non-verbal communication. I sew and craft; it always pleases me to be able to modify something off-the-shelf that can work to make life easier or substitute for some expensive piece of "adaptive" equipment. Easy, free or cheap...that's my style! My husband is quite handy and has jumped in with a number of projects himself that I think are terribly clever. He talks at times of a father's need to "fix things," and since he can't fix the Rett syndrome, he focuses on fixing the challenges it throws our way. Wait till I show you some of the creative things he's designed!

All of this is for you, the parents and teachers of other children with disabilities. Please let me know what you find helpful or what I need to clarify. If you have a question about a project you think I might want to tackle, please do suggest. Above all, if you have ideas to share, I hope you will let me know. Together we can make this a resource for families with the need to adapt and the desire to do it creatively.

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To help you know what to expect here at Adapting Creatively (as well as to keep me on track!), I've added a Schedule of Posts page. Be sure to check it out!