Resilience as a Way of Life

If living with disability teaches a family anything, it teaches us resilience. We can handle more than we think we can.

 

Photo by Healingdream

 

I‘ve been thinking a lot about family resilience lately. Maybe that’s because our family is getting a chance to flex those muscles of resiliency hard. It was good catharsis for me to write down all the things we’re dealing with right now, but I erased them because my words sounded whiney. The point is, we’re being pulled from many sides.

All of us are being pulled. Much of the time.

There is no point in letting it get us down. We are stronger than we think.

This week I took part in a support group for parents of kids suffering with a particular illness. It was lovely to meet other parents and hear their stories. We were all at different places in our journeys, but the current that carried the words around our table was one of resilience. These families tackled the challenges and kept their eyes fixed on the goal line. That’s something parents learn to do, and the more practice we have at doing this, the more familiar and comfortable it becomes.

I won’t say that it becomes easier, because that isn’t always true. Sometimes resilience is a difficult response that takes focused effort. But with practice, it comes more naturally.

I hear similar stories of stress and resilient responses in my disabilities circles. Life dishes out messy circumstances sometimes, ones that can get us down. It’s okay to cry for a time, especially early in a diagnosis when our hurt is raw, but then we need to pull on our rubber boots and wade through the muck. And we do, one step right after another. Eventually, we get out of the sloppy mud.

There is a lot we can do to draw strength during stressful times.

·         We pray. Hard. Faith often grows when we are stressed.

·         We make time to connect with our spouses. It might just be brushing our teeth together as we switch shifts, but we savor that time.

·         We take solace in our routine chores. After all, everyone needs clean clothes even if one of the kids is in the hospital. And the goats still need to be fed…just ask them.

·         We help someone else going through a rough time. The strength you can draw from this one never fails to amaze me, but I see it often. Parents who are working hard to keep their own brood in a sane place will offer encouragement or advice. That very act gives them energy to keep going. It is true for me.

·         We let go of the optional. We may have to post to our blogs less often (do you feel an apology hidden there?). We may have to back out of the carpool for a time or let someone else teach Sunday School.

·         Pet peeves are optional. Learn to let them go or see them differently. Kitty prints in the dust on the mantel normally send me to grab the duster. Right now, during a time that demands resilience, I look at them as evidence that the cat is alive. This makes them a good sign, right?

·         If you can’t set aside time to enjoy your hobbies (do I hear you belly laughing about now?), see if there is some way to build them into your temporary routine. I love to tat (that Victorian art of making lace with shuttles) and find it’s something I can do in the car while my husband drives us to the hospital. Well, that was before I injured my hand, but I digress… Above all, try to find things within your busyness that make you smile. Or even laugh.

·         We ask for help. If anyone knows how to do this, please share. I’m lousy at this one, but have heard it helps.

You are an expert at resilience. Would you share with us what helps you stay strong when the pressure is on?

For All the Parent Warriors

Some days we parents may seem strong on the outside, invincible warriors fighting tremendous battles for the sake of our kids...and doing it successfully! But there are days when, inside, we are tender children aching over the challenges our own precious kids face each day, torn down from all the medical stresses, or just plain worn out from the daily extras.

A wonderful song from Twila Paris came up on Pandora this morning, at just the right time. This song has really strengthened me during tough patches in my Christian walk, and I was blessed to hear it again today.

For all you warrior parents (and teachers too!), this song's for you.

The Warrior is a Child
by Twila Paris

Lately I've been winning battles left and right
But even winners can get wounded in the fight
People say that I'm amazing
Strong beyond my years
But they don't see inside of me
I'm hiding all the tears

They don't know that I go running home when I fall down
They don't know who picks me up when no one is around
I drop my sword and cry for just a while
'Cause deep inside this armor
The warrior is a child

Unafraid because His armor is the best
But even soldiers need a quiet place to rest
People say that I'm amazing
Never face retreat
But they don't see the enemies
That lay me at His feet

They don't know that I go running home when I fall down
They don't know who picks me up when no one is around
I drop my sword and and cry for just a while
'Cause deep inside this armor
the warrior is a child

They don't know that I go running home when I fall down
They don't know who picks me up when no one is around
I drop my sword and look up for a smile
'Cause deep inside this armor
Deep inside this armor
Deep inside this armor
The Warrior is a Child


Here's a video version if you aren't familiar with this song...

 

 

Have an amazing day!

You're invited to Kelly's autism Bible Study (free eBook, too!)

Kelly Langston is a remarkable mom who also happens to have an amazing son with autism. She has just launched an online Bible study growing out of her book Autism's Hidden Blessings and YOU are invited! Her publisher is also offering Autism's Hidden Blessings free of charge for just a few days here, so don't wait to pick it up.

I haven't read the whole book...but eagerly and tearfully devoured the first section. Kelly is a committed Christian whose message to other Christians is one of hope and promise. If you are in need of God's encouragement as you raise a child with special needs, this might be just the book for you.

Her message isn't limited just to families having kids on the autism spectrum. No, it meets Christian families who face disabilities of all kinds.

If you are interested, please check out Kelly's blog to learn more about the online Bible study. Enrollment for the study is only open until Friday, May 4th, so you'll want to sign up speedy-quick. Kelly will be offering a light weekly homework assignment and open it up for discussion in an online study area. I sure would love to meet some of you there!

If you don't have time for the study itself, hopefully you will still download and benefit from Kelly's book. If the rest of it hits as close to home as the beginning section, I can tell it's going to be hugely encouraging and strengthening in my faith.

* * * * * * * * * * * * *

5-6-12

Kelly had to close this session of her Bible study on autism and other special needs, but there is great news if you missed the sign in time! You can ask to be added to a waiting list for a future session. Click here for the link to Kelly's waiting list. She'll let you know when that next session is scheduled.

I encourage you to sign up. This first session is so encouraging so far! There are 400 parents supporting and cheering each other on as we claim the biblical promises God has made us and our children.

Five Tips for Successful Teaching at Home

Parents can make great teachers. We have some luxuries that teachers at school don’t always have...access to our kids when they are at their best and in a wider variety of environments. We don’t have to hurry. We don’t have to start the relationship from scratch every fall. We already know what motivates and delights our kids.

We can use these advantages for boosting our kids’ learning. Whether we support learning that is already happening at school or branch off with our own set of skills to learn, our kids can learn a lot at home. Here are five essential mindsets to make the most of the time we spend helping our kids learn.

1) Expect the best. Children tend to live up to the expectations of those people they value. Believe—honestly believe!—in your child. He’ll pick up on your attitude. Just as important, tell him you have confidence in what he can do. Be his most supportive cheerleader. Brag up your child’s accomplishments to others in her hearing, always ending with, “But then, it’s no surprise. We knew she could do it.”

2) Make learning interesting. Tie it in to your child’s passions. By relating the topic/activity to something child loves, you’ll keep her interest much better.

If she is crazy for penguins, let her practice her reading on books about penguins. Import images of penguins from the Internet into Powerpoint and let her write facts as captions to make a book. It can be as simple as her writing in the missing word in a repeating frame sentence on each page:  “Penguins _____ ....” She’ll remember—and read—“can” after this activity much better than if she copied the word five times on a worksheet!

Shark Toob toys

Work on ordering sizes using her penguin collection, letting her set them in a line from smallest to largest. Use penguin manipulatives to practice adding and subtracting facts to ten (check out all the types of “toob” sets available through Amazon.com using their search feature; Michael’s Crafts also carries them. They come in every theme you can imagine!).

Bring in music. Maybe I’m dating myself, but I still remember grammar rules from “SchoolHouse Rock” songs played during intermissions between cartoons. Oh, and facts about the solar system from an astronomy operetta we learned in 6^th grade. Check out SongsForTeaching.com to preview some fun song-fact CDs you could sing together in the car to make good use of that time driving back and forth to therapy. Or type a search into YouTube for “(your topic) songs.”

Make drill work into a game. There are many more ways to practice drill than on worksheets or flashcards! More-than/less-than is pretty ho-hum as a worksheet exercise, but everybody loves a rousing game of War (the new politically correct name is “Top It.” Parents have no idea what that is. It’s just the same good old game of War we grew up loving).  

Touch your head it the number is even, touch your toes if it is odd. Or convert true/false into a Simon Says game; if the fact is true, do the motion. If the fact is false, don’t change to the motion.

There are way too many sources on the Web to list for free online games to practice skills. Just type “free online (your skill) games” into your browser and check out the pages of results! You’ll need to preview them first, because some may require responses that are beyond your child’s capability (i.e.: a child with motor issues might get frustrated with a timed game).

Switch out modes if possible, so that kids get practice at the material in lots of ways. It’s more interesting and it will help them generalize the information later. Sometimes we read a book, sometimes we read the captions on the bottom of a movie (by the way, it’s a great idea to leave the closed captioning ON on your television if you have budding readers at your house and especially if your kids are working on developing rate/fluency!), sometimes we read the words on road signs or cereal boxes.

3) Make learning meaningful. Give it a purpose, a function. Transferring walnuts from one bowl to another is (y-a-w-n) BORing fine motor work. Transferring wrapped candies into goodie bags to pass out to trick-or-treaters gives fun purpose to the same task.

4) Keep practice short but make it often. Do you know what an amazing opportunity sits in front of you if your child needs supervision during toileting? My daughter has memorized so many things during toilet time—sight words, spelling rules, math facts, the order of the planets, anatomy of a fish, you name it! We keep flashcards for memory work on a shelf above the toilet. Working through them 5 minutes at a time, 5 – 6 times a day makes for a great schedule!

If toilet time isn’t an option at your house, try to find some other daily ritual that lends itself to short bursts of practice...often. How about 5 minutes of practice at the end of meals? Waiting for the school bus? In the therapy waiting room?

5) Relax and have fun! Learning isn’t a race. What your child doesn’t learn today, he can learn tomorrow. Take a deep breath—it’s really okay. If something just isn’t sinking in, come back another day, another month and give it a fresh go. Parents have a lot more leeway in this area than the school does so at home, especially, relax. Learning should happen for a lifetime, and so if it something doesn’t click today, you have all that lifetime to keep working on it.  

Learning at home can be very rewarding and lots of fun to boot! Here's a challenge for you...think about what might you help your child learn at home. Did you find any ideas here that might make it successful? Is there something I missed that other parents would benefit knowing about? Be sure to let us know what you are doing!

Also, take a look at Barbara’s blog carnival at TherExtras. She’s asked parents to share what they taught their children...you might get some really terrific ideas there!

Thanks so much for stopping by!

How Far do Encouraging Words Go?

We parents are vulnerable when it comes to our precious kids. It’s hard for us to imagine how other people can overlook their courage and beauty. So when folks say insensitive things, even if they are meant with the kindest of intentions, we rant about their words.

In fact, we special needs parents have a rather unflattering habit of complaining about the thoughtless things people say regarding our kids. There. I said it. And I’ve done my fair share of griping.

I owe the world an apology. I’m sorry for my reckless rants over words that weren’t the most sensitive.

I’d like to shift the discussion onto the ENCOURAGING things people say.

Sure, those gems may come along less often than the thoughtless remarks. But if we look at why they encourage us, perhaps we can become better encouragers ourselves.

My most vulnerable days were when we received the news of our daughter’s diagnosis. Family and friends honestly didn’t know how to respond. But then, I had no idea what they could have said that would have made me feel better.

At the time, everything said to us was intended to encourage, and some of the comments were helpful. Others were less so, but I tried very hard to look past these abrasive comments to the intent behind them. Some days it was easier than others to do this.

But one neighbor gave me the gift of a most excellent response. Over fourteen years later, her healing words still encourage me. I think back to that winter afternoon and it makes me warm all over again.

I had been tidying up picture books from the living room after my daughter had strewn them all over the floor. Quiet tears slid down my cheeks because the new explanation of her odd behavior tied it to issues we couldn’t control. Her need to toss all things vertical into a horizontal position stemmed from sensory issues related to her diagnosis of Rett syndrome. Not that every child with RTT is intolerate of horizontal lines, but they drove her nuts back then. On that afternoon, it felt like our whole world was vertical and we were trying to figure out how to adapt it for Little Miss Horizontal.

There came a gentle knock at the door and I straightened myself up as best I could before opening the door. On the porch stood our neighbor. Our baby girls were a few months apart in age; we were both older professional women who had chosen to stay home to raise these babies. We got together for play dates a few times, but conversation became awkward over time as her little one raced ahead in her development and my daughter’s skills took a backward tumble.

From my tear-stained face, it was obvious something was upsetting me. Our neighbor asked what was wrong and I told her that our daughter had just been diagnosed with Rett syndrome. Her reaction was selfless and genuine and more perfect than she could know.

“I’m sorry,” she said. “I’ve never heard of that. Does it make her hurt?”

The focus, completely on my daughter and her level of comfort, was a fresh perspective that rechanneled my own frightened thinking.

*It wasn’t about me. It was about my little girl.

I had an easy enough time feeling sorry for myself, for my grief and lost dreams and the overwhelming thought of caregiving for the rest of my life. Having someone step in and remind me who the diagnosis was about was a very good and gentle correction.

*It wasn’t about the future, but about here and now.

I was so wrapped up in how we were going to handle the big picture that I lost sight of today.

So many people jumped right to questions about our daughter’s future...her physical and mental potential, her living situation, and, dare I say, her lifespan. Families, especially, tend to think this way, perhaps because they are involved in our lives for the long haul.

It’s kind of overwhelming to think about such a huge picture as a new parent.  To be asked these questions is to be reminded of how of just how overwhelmed we are.

*It didn’t pretend to understand the unknown.

My husband and I had never heard of Rett syndrome before our little girl came along; I’d wager than the VAST majority of the population hasn’t either. When this neighbor honestly admitted she didn’t know about it, I felt less alone in my ignorance.

It doesn’t help parents to pretend we know about something we have little knowledge of. Somehow, faking knowledge trivializes the conversation. It adds an element of insincerity. And believe me, parents at this vulnerable stage need sincerity...desperately.

*It was about my child’s comfort.

The fact that this lady expressed concern for my daughter’s pain level was probably the single most comforting thing she could have said.

As a mother, I want my children to live free from pain. My neighbor’s concern identified with that universal, deep-seated anguish parents have when our children hurt.

After all, there is a reason that hunger relief agencies show not just the haunting faces of starving children in their funding advertisements. They are sure to include the face of one or two mothers agonizing over the pain their beloved children must endure. We may not be able to identify with severe starvation, but we most certainly identify with the desperation of these mothers.

That one little question drew my neighbor alongside me in this new and terrifying role, and I suddenly felt less alone.

Yet she didn’t ask it for my benefit. She was genuinely concerned for my daughter. And that shifted my perspective around so I was free to focus on my daughter as well.

You know, my answer was that no, Rett syndrome itself doesn’t cause pain. And that was a HUGE positive that I had overlooked (mind you, there are a number of resulting conditions that can cause tremendous pain, but we weren’t dealing with these yet). Right then, I felt immensely blessed to be able to give that answer.

Admittedly, it’s difficult to know the right words to say when we learn that a friend’s child has been diagnosed with a disability or been seriously injured. But focusing our encouragement on the child and the child’s comfort can go a long, long way in bringing comfort to the parents.

This kind neighbor will never know how great an impact those few words made. Time and time again they have brought me support and new focus. They have helped me consider what I might say...or not, in the event a child is obviously in great pain...and I hope that those words have been soothing to other families as well.

What encouragements have people offered you that you found helpful? What can we learn from these statements? Please let us know, so we can become better encouragers ourselves.

Making today count...

It seems like I’ve been bombarded lately by the same message:  make today count with your children.

Over at 5 Minutes for Special Needs, Suzanne Perryman has a thought-provoking message about loving your children as though today wastheir last one on earth. We have no guarantees about tomorrow. When our kids have medical issues, this point is especially true.

Lynn Cowell, contributing author at Proverbs 31 Ministries, echoed the same message about being genuinelypresent for our children  before they are grown and gone from home. Our kids have only one childhood; if we are going to be part of it, we need to do that while it is here.

Our family has experienced some harrowing moments over the past few months that underscore this appreciation for time, for making the very most out of the precious minutes we share with our children.

Our daughter’s myoclonic jerking has taken on a challenging new twist over the past two months that has caused us to step back and appreciate our time in a new way. It now consumes all her waking moments. Her whole body thrashes with rhythmic pulses that she cannot control. It’s exhausting, debilitating, and progressing with frightening speed. The movements are so unique and unfamiliar to her doctors that they wanted her tested to rule out brain tumors or deep-brain seizures. We are grateful that the tests came back clear, but their potentially serious—even fatal—outcomes have underscored the importance of treasuring the time we have with her.

The week after hearing the relieving news about our daughter’s brain scans, I was called into my gastroenterologist’s office to discuss biopsy results from a recent colonoscopy. Now a doctor doesn’t usually bring you to his office to congratulate you for a happy colon, so I knew the news wasn’t going to be happy-skippy. Those few days between the call to come in and the arrival of the actual appointment left time to mull over the sobering thought that none of us are guaranteed a 60^th birthday nor even good health. While I’m not looking forward to repeating the colonoscopy in a year to make sure the pre-cancerous polyp is completely gone, I’m thrilled not to be receiving a diagnosis of cancer.

And I find myself doing a bit more of what both Suzanne and Lynn remind us...

...focus less on the housework and more on the children

...turn off the computer/phone/tv and turn full attention onto listening to our kids

I’m doing more to include my kids, whether it’s an invitation to join me on errands or in the kitchen to get dinner ready or just sit close together under a blanket when the family is watching tv.

Instead of racing to “get through” personal care and hygiene moments, I am trying to turn them into opportunities to connect and communicate. Sure, it takes longer. And realistically, I can’t do it every time. But when I can it is oh-so-worthwhile.

This savoring of moments with our kids is wonderfully selfish as we benefit from the interactions and memories shared with them. AND it is an act of giving, in that our children receive love and respect and the knowledge that they are treasured. Is there anything better than that kind of two-way benefit?

What do you do to treasure these days you have with your children? Treasuring isn't limited just to parents...teachers, Sunday school teachers, 4-H leaders, therapists, doctors...anyone who impacts the lives of kids has the opportunity to hold these precious moments. How do you savor days with a child?

Why Parents Must Never Make Assumptions

When our kids are non-verbal and unable to ask questions, it is easy to forget how much—or how little—they understand what is being said around them. It’s so important we check with them about what they understand!

Sometimes they know more than we think.

My daughter and I were talking about a specialty medical appointment she had a couple weeks ago. She liked the doctor and laughed at his jokes, but she seemed distressed after the meeting.

The doctor had mentioned that we need to have her brain scanned to rule out the possibility that my daughter might have a brain tumor. Not surprisingly, this bit of information was upsetting to her.

I don’t think the doctor realized she knew about brain tumors. I didn’t imagine she would know much about them either, nor did I expect the possibility to come up during the appointment so I could prepare her. But it turns out that she does know that they can be very serious, and the idea she could have one frightened her. Who knows where she’s heard about brain tumors? Who knows what knowledge or misconceptions she might have about them?

We talked and I tried to reassure her; she seems to feel more relaxed about things now.

But her reaction was a good reminder to me that our kids just might understand things we don’t expect them too.

At the same time, gaps in our kids’ experience may limit the understanding they have. Remember that the inability to ask clarifying questions is a HUGE limit to experience, too.

This means we must explore misconceptions our kids might hold...even when they don’t have the ability to put these misunderstandings or questions into words.

This is tricky, both for parents and professionals. We have to explain so that a child’s understanding is accurate and complete, yet without belittling what information the child may already have. It’s a delicate balance.

It isn’t like we can say “Tell me what you know about _____,” as we might with verbal children, when our kids have little or no expressive language. This is equally difficult if their ability to express themselves is limited to the choices we offer as “expression.” In fact, offering choices might actually add to their confusion and misconceptions.

So what can we do to promote understanding and expression?

Here’s what I can come up with; I’d love for you to add on your thoughts in the comments:

1. Presume your child may know more than you think. Many kids are sponges, picking up information from all around them. They hear things at school, on television, in stories...and you can’t be everywhere they’ve been to know what they’ve heard in these places. They may know just enough to have lots of questions and fears.

2. Add background knowledge. Sure, your child may have been exposed to an idea, but we don’t know if their understanding is complete. If they can’t ask questions, we need to provide answers to those questions they can’t articulate.

3. Keep information appropriate to your child’s level of understanding. When in doubt, consider what their age-mates would want to know and keep your information geared to that level.

4. Be truthful about your own fears. Can you imagine how lonely it would be to think you are the only person in the world experiencing a particular fear? By letting our kids know that we are afraid—but will be strong for them—then they know they aren’t alone.

5. Revisit sensitive topics. Sometimes more questions come up in time. We don’t have to beat an idea to death, but it’s good to ask our kids if they have any new questions or fears. I plan to go over the new concerns my daughter may develop as the date for her brain scan gets closer.

Do you agree that it is important for other adults in our kids' lives to refrain from making assumptions about what and how much our children understand? We (and I speak in the inclusive "we," meaning educational and medical professionals as well as parents) are in a position to educate them by example.

Thanks for reading, and thanks for your prayers for my daughter’s health. Not only do I look forward to health improvements for her sake, but also so I can get back to blogging more often. I really miss spending time with you here.

--Rose-Marie

Where are the Special Needs Parents?

 

I did the unthinkable during our district’s conference week. I missed my daughters’ conferences.

How in the world did I manage that? After all, isn’t their education a priority to me?

Absolutely, I value their learning immensely. If learning weren’t significantly important to me, would I have gone into teaching?

My problem? Childcare.

In high school, students stay home while their parents attend conferences. After all, what 15-year-old can’t stay home alone?

Mine, that’s who.

It’s times like this that the practical issues of caring for a child with significant disabilities remind me just how different the lives of special needs families can be. I thought today might be a good one to share with teachers and school administrators why your special needs families might participate less in school activities than you wish.

In the days-before-disability, I was part of a staff discussion at our elementary school on why special needs parents are so noticeably absent from Parent-Teacher Association (PTA) meetings. There was speculation among teachers; now I know the reasons why. Let me offer a little insider perspective.

1) Childcare is a real issue, especially as our children get older and bigger. If conferences or PTA meetings happen during hours our caregivers are not normally scheduled, we often cannot get help that frees us to attend.

2) Parents need time to catch up when our kids are gone. It’s tough for special needs moms to volunteer at school during the day. We need that time for doing tasks many mothers do when their children are home. As a wonderful mother of a busy, busy (busy!!!) student with autism in my class once said so eloquently, “When he’s home, he’s all I can do.”

3) Our kids often can’t come with us. Routines are hallowed to some kids—and inflexible. Only those living with our children can understand the cost of disrupting these routines and that we may have to pay dearly for days to come. Is the PTA fundraising event worth it to our family?

Our school’s PTA generously provided childcare in the room next door to the room where parents met. However, the sitters did not have the training necessary for the special health and behavior challenges that come with disabilities. The “provided childcare” couldn’t accommodate their needs.

4) Parents don’t have energy for extras. Let’s face it, getting through the day with all the lifting, chasing, handling explosive behaviors, loads of extra laundry, driving to therapies, cooking special diets, feeding, advocating, telephoning, toileting, and such...means that we may not have energy to go to a PTA meeting in the evening.

5) Parents may have different priorities from the school. Few special needs parents would suggest that PTA is a bad thing. But some are fighting for some basic needs in life—a sense of normal for our family, for our children’s health, or even our children’s lives. In the grand scheme of thing, PTA may not be that big of a concern to us.

How can you help special needs families?

Find out what method of contact is easiest for these families. It may be email, a handwritten note, the phone, or it might be when the parent drops off or picks up their child. Families have specific reasons for finding one of these methods best to connect with you. ASK.

Try to be flexible with meeting times. Childcare is a major issue for many families. It isn’t like we can simply phone a neighbor or send our children home with a playmate while we attend a meeting after school. If you can offer multiple time slots, there may be one that actually works with our family’s schedule.

If flexibility isn’t an option, give us lots of lead time to plan for childcare...and a loving reminder when the meeting gets close. It can take weeks to arrange for a caregiver to come watch our children. Trust me on that one...I’m not being dramatic. And then, because our memories are so overfilled that we sometimes can’t remember to check our calendars, a polite reminder notice that the meeting is scheduled for the next day is helpful and appreciated.

Suspend judgment when parents don’t come to functions. It may have nothing to do with our commitment to our child’s learning or to your school. Our families deal with very real, practical issues that you may not be aware of.

Thank parents for participating. We may have made sacrifices to attend a school function. You never know. When you see us, let us know you appreciate our effort to come.

What would you add to this? Are there things you have done as a teacher to support families in their relationship with the school? Families, what would help you participate more easily with school?

What makes for quality respite time?

Ever feel the need for a break from your caregiving duties? We all do, even if for just a fleeting moment.

We call that respite.

 

The thing is, we each need to define and honor what respite means to us personally. And those around us need to honor that as well.

Take my daughter’s State case manager. He means well, truly. But his definition of “respite” involves sending our daughter off to a week-long sleepaway camp. “Think of all the time you’ll have for yourself,” he says.

What he doesn’t see is the three solid days prior to camp that it takes me to set out and label a week’s worth of clothing, medication, food, and other supplies.

He doesn’t factor in that camp is a half day’s drive away, nor that I must lug mountains of bulging baggage down to the rec hall once we arrive.

He doesn’t see my worry the entire time my daughter is gone. Worry about seizures, falls, misinterpretation of her communication, missed hydration...the list is endless. Even when I am able to surrender my worries, I can’t stop missing her.

He doesn’t see the illness she brings home every year. Last year, she picked up pertussis and shared it with me. I was sick a full six weeks following her return, sicker than I’ve been since the time I had mono in high school. This summer, she brought home strep and shared with the entire family.

You start adding up the half-week of preparations, the week of worry, the 3-6 weeks post-camp illnesses, and it doesn’t look a whole lot like respite anymore. Sure, it’s great fun for her. But respite for me? Not hardly.

Compare that to my dear husband, who has learned to accept the fact that I really, really like to be around my daughter. After all, she’s a truly likeable kid and I enjoy her presence. Add to that the fact that I can relax better when she is near.  Her health issues are ever-present and need to be handled carefully so they don’t blow up into full emergencies. I am not comfortable leaving her in the hands of anyone who doesn’t know her inside and out.

He knows I’d be completely miserable if he whisked me off to some tropical paradise so long as my daughter’s health is what it is right now. He’s a clever man, that husband of mine! (Sorry ladies, he's taken).

My husband planned the perfect “respite” weekend for my birthday last month. Instead of taking me off away from the kids, we all went away on a splendid weekend getaway. We girls schemed and shopped for our fancy evening wear, which was admittedly a whole lot more fun than setting out a weekend’s worth of supplies for a caregiver. We splurged on two adjoining rooms at the hotel. This gave my husband and me our privacy but the girls were still close by so I didn’t have to wonder what health issues may or may not be happening. For me, it was the perfect respite scenario.

That indulgent kind of weekend isn’t something we can afford to do outside of Milestone Birthdays (I’m not letting on which one it was...). To me, run-of-the-mill respite time is most restful if I can spend some time at home doing things I love that I wouldn’t be able to do if I were attending to my daughter’s needs.

Nothing is more restful to me than holing up for an afternoon in my sewing room, uninterrupted, listening to the laughter of my daughter and her wonderful caregiver as they enjoy a game or a movie together. Or I might go lie out in the pasture with a goat curled up under each arm and watch the treetops dance in the breeze.

Respite to me is getting to let go of the duty for a time. It isn’t escaping the girl or even escaping her health issues. In fact, I don’t want to be far from them. I just need a chance to breathe deeply sometimes, to immerse myself in something that isn’t related to care.

What about you? What do you do for respite? What would you do in your wild imaginings (keeping in mind this is a G-rated show)?

 (photo courtesy virtualphotographystudio at Flickr Creative Commons)

Join us at Bloom

Ah, summertime! I hope these summer months find you relaxing and enjoying time with family and friends.

I’m so excited and honored to have a post featured on Holland Bloorview’s special needs parenting blog, Bloom. If you aren’t familiar with Bloom, you are in for a fabulous treat. It’s a top-rated non-profit blog with outstanding contributors and one of the dedicated author/editors you will ever hope to meet.

Mosey on over to Bloom and look around—you won’t be disappointed! While you are there, please leave a comment. They are always appreciated!

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?

You’ve Got to See This: My Unique Child

Whether you are a parent or a professional looking for information specific to a diagnosis, you’ll find a wealth of information at My Unique Child. Let me share a little about the great things you will find there.  

First, My Unique Child is a very warm and reassuring place. The site is brought to you by Cheryl Scott, Licensed Mental Health Counselor, who also happens to be the mother of a child with special needs. She’s also a really nice person. When she invites your comments and questions, know that her invitation is sincere. The site is growing and changing and she would appreciate your input about what would best meet your needs.

You will find My Unique Child to be well-organized. You can locate the information you need easily.

The first section provides information on exceptionalities (the special challenges that our kids face) and diagnostic codesfor various disorders, which is something that parents need often for the mountains of medical paperwork. With ever-changing codes, it’s really nice to have an up-to-date source for this information.

The second section provides a nice assortment of videos related to specific challenges. Some provide information or first-hand insights about living with a particular disorder. Others offer ideas for therapy activities to help children learn and communicate.

You’ll find an ever-growing book list, from general disabilities information and coping to specific diagnoses.

Following the contact page tab, there is a page of helpful tools. These include free video tutorials and a list of recommended products to use with your child. All of them are tested and true.

I hope you will pop over to Cheryl’s My Unique Child site; you’ll be glad you did. Pull up a cup of coffee and settle in for a good browse. And while you’re there, please let her know what else you’d like to see. 

Building Blocks for Communication

Watch a loving parent interact with her young baby. Baby babbles “oooo” as mama picks up a teething biscuit. With great enthusiasm, mama responds “Yum, you want a cookie!” Baby gets that cookie and, even more importantly, she gets adoring interaction with one of the most valued people in her life.

"Yum! You want a cookie!"

Mama never doubts her little girl will learn to talk. Her hope inspires her to repeat scenes like this thousands of times over the next couple of years. The two go through this ritual of babbling in the context of an activity, pairing the babble with a word and a reward, and language naturally unfolds. Replay this scene over thousands of years, over millions of families. It is timeless, universal, and seems effortless because it is fueled by hopeful expectation.

Children without the ability to develop verbal speech deserve that same support as they develop alternative communication. The sad thing is, it rarely happens this way for them.

I don’t know why. Maybe people view non-verbal communication as “broken,” needing to be “fixed” rather than naturally caught. Maybe because it is not the way the adults naturally communicate; they feel it must be structured and purposefully developed. They’ve never seen it modeled. It may take planning to have materials ready…

True, something outside our experience may need more structure for us to teach. BUT that doesn’t mean we have to leave behind hope for communication or to impose unnatural strategies.

Perhaps even more than their peers with speech, our kids need the benefits of the kind of support illustrated in that mother-baby story setting the stage for our discussion.

What does the mother from that story teach us about building the foundation for effective communication?

1) Build relationship. We value the child, we express that value to the child.

We value their efforts. We pay attention to them. We notice when they are trying to communicate. For some of our kids, the motor effort is so tremendous that they simply haven’t the energy to repeat themselves. Eye gaze is a very quiet response mode; you have to be watching or you will miss that telling glance.

Teachers, therapists, even extended family that doesn’t see the child daily need to remember that it takes some time to build a relationship. If a child doesn’t try to communicate with you right off the bat, they are no different than many speaking children. It can take time to become familiar. Give yourself time to tune in to the child’s subtle cues. Give the child time to feel safe with you.

Relationships that nurture are those that believe the best in someone. We hold high hopes. We expect good things for them. We expect that they will progress and grow. All kids deserve this kind of expectation.

Our illustration showed mama cherishing baby’s stumbling efforts, shaping them with a loving model spoken correctly. We accept whatever our kids can offer, assign meaning to their efforts, and lovingly model a way they can express that idea more clearly. We expect that they will show more clarity down the road.

2) Build trust. The child has to trust that you are listening—really listening. And you have to trust that the child means what she says. We do this when we take what he says at face value. He knows we will act on his requests, honor his choices and opinions...just like we would for a speaking child. That is going to make him continue trying and learning.

He may make mistakes. He may touch the symbol for “asparagus” when he really wanted “ice cream.” That’s okay.

You don’t ask him, “Are you sure? Show me again.” That shows him you doubt what he has said, and doubt stands opposite of the trust you are trying to both show and to cultivate in him.

Nope, you offer him a bite of asparagus, just as he asked. He’ll purse those little lips in refusal. That opens the door for you to say, “But you told me you wanted asparagus. Have you changed your mind?” There—you have affirmed what he said, and you have given him a way to back out. You trusted him; you acted in a way that allows him to trust you.

You offer him the symbols again.  This time (hopefully!), he’ll touch “ice cream.” Over repeated practice in different situations, you can trust that this mix-up won’t happen again. You may never be able to get him to choose asparagus again (try steaming it ever-so-lightly...makes a big difference).

In our opening story, mama didn’t ignore the baby. She didn’t refuse her the cookie because her request wasn’t perfect. She didn’t pull a fast one, swapping out the cookie for a healthier snack. She is teaching her that she can trust mama to meet her requests, however budding they are right now.

3) Build conversation. Communication grows when people reach out to one another to share ideas. It does not grow out of drill.

One of my favorite mantras as a teacher was “Teach, don’t test.” A reasonable communication corollary would be “Talk, don’t test.”

We teach—we talk—by living life alongside our child. We give them natural reasons to listen and to express themselves.

If you want to teach colors, talk about the colors in your world. Marvel at the blue of the sky, the green of the trees, the red of the tomato as you point them out. Support him—both receptively and expressively--with the color words he needs. Give your child a choice between outfits/blocks/cars of two colors.

Don't hold up a banana and quiz her by asking what color it is. There’s the possibility she'll assume you aren't clever enough to figure it out yourself. And if you ask her to repeat herself over and over, she will give up trying to teach someone who simply cannot learn, no matter how many times she has tried to teach you that a banana is yellow.

Similarly, if the child tells you he wants the red crayon, give him the red crayon! Don’t ask him to repeat himself a dozen times! Sadly, this is a HUGE and heinous problem non-verbal communicators face. We do not do this to speaking children. Our non-speaking children deserve the same respect.

I can't tell you how many kids get branded as incompetent when it was the teacher who set them up for failure by 1) asking stupidly obvious questions that insult the child, 2) asking the child to repeat themselves ad nauseum, until finally 3) the child gives up (and is, at that point, saddled with all kinds of demeaning labels).

Our mama heroine did not demand that baby repeat her “word” over and over, and especially not  until it was pronounced with dictionary precision. She didn’t stand at the counter and ask her, “What’s this?” No, mama took baby's initiation and responded. She kept the conversation going even though the baby could not add anything more. This is a child who is not at risk of giving up.

Three simple, critical building blocks foster communication: relationship, trust, conversation. Our story illustrates all three. If your child's story doesn't illustrate them yet, how can you change that?

You might also like these posts:
Building Communication through Play
Let's Talk: Get the Conversation Started
"She Talks with her Eyes"

Photo by abbybatchelder.