Your Magic Wand

What would you do if you had a magic wand? Would you make changes for your children with disabilities? Yourself? Other members of your family? Or would you use it to help those outside your family – doctors, therapists, neighbors, extended family, friends – understand and accept your children with disabilities?

I think most people outside the sphere of disability would immediately think we would use the magic wand to ‘cure’ or ‘fix’ our child with a disability. My co-workers, for instance, would be sure I would wave the wand and make Ashley see and hear, or Ronnie hear, or Jessica stop her raging behaviors. Well, other than Jessica’s raging behaviors, I wouldn’t use my wand to change my children – unless they asked me to.

I love my children exactly the way they are. If they preferred to have their disability taken away, then most certainly I would use my wand for that. But it wouldn’t mean they would be any ‘better’ in my eyes. They are perfect already.

I believe I would use my wand to make their lives and my life a little easier. I would wish that we would all not catch so many colds and get so many infections. I would wave it before walking into a doctor’s office. My wand would go shopping with us to stop the stares and rude comments. And of course I would use it to instill a belief in their teachers’ minds that they were capable and worthy of an appropriate education.

I might use it to help Ashley sleep a little better at night, and to get things done around my house to make it easier for Ashley’s and Ronnie’s wheelchairs to get around. Then of course, I could use it to make the grass and landscaping in my yard always look perfect!

Having a magic wand would indeed be fun for a while. How about you? How would a magic wand help you?

How To Move Past Hypocrisy

When my family goes anywhere, we usually don’t go quietly or unnoticed. We’re not Kate Plus Eight, but everyone’s attention is usually diverted, at least for a short period, to my family. And, being someone who is more comfortable not being noticed, this situation has been quite an adjustment for me.

For the most part, I’ve moved past caring too much about the stares of strangers when we shop, go to the park, go to the movies, or other community activities. But there is something that still troubles me, and I don’t know what to do about it.

Because I am a single parent, where I go, so go my children. Tonight, a memorial service is being held for the recently deceased mother of one of my co-workers. My co-worker and I have been with the same employer for over 25 years now. I am expected to be present at the service and I want to be present. What I don’t want is for my family procession to take anything away from the decorum of the ceremony. And that’s just one example.

About every two months, all my co-workers get together at a local restaurant for dinner. Families are included, and very often attend. But my family is a little different than most – okay, a lot different. My co-workers don’t understand my children and don’t know how to interact with them. In fact, some are probably uncomfortable around my children.

My children and I should not have to spend our lives only moving in social circles of families like our own. While I love every moment I spend with my friends that have children with disabilities, and I am so grateful for their support, I really don't want to impose limits on my children.

I espouse inclusion to anyone who will listen. But here are situations where I could choose inclusion for my children, and I don’t. I guess that makes me a hypocrite. But how do I move past the uncomfortable feelings for others as well as for my family to get to that state of inclusion?

Why?

The group home in which Jessica lives is dark. The draperies are usually closed – the furnishings are dark and heavy – even the air inside the home seems oppressive.

The day support program she attends is in a one-story cinderblock building. The walls are institutional green – the adornments on the walls are posters about CPR and behavior management – the furniture is old and mismatched and lost its original color years ago.

The school classroom to which Jessica is assigned is in the basement of the school building. It too is dark and joyless. Again, the walls are institutional colors, and many of the lights are burned out. There are no windows and whole feeling is one of gloominess.

The descriptions above are not the exception. Jessica used to attend a different day support program, and it was worse than her current program. And the other two group homes in which she has lived were also dark, gloomy, and drab.

Why?

Why don’t people with disabilities deserve lightness, bright rooms, cheery kitchens and the occasional barbecue outside? Why can’t they assist in planting flowers and a vegetable garden at their group homes? Why can’t the draperies be opened more frequently and why can’t pleasant music be playing in the background rather than the constant din of the television?

How can we expect children with disabilities to be excited about going to school when the being there provides nothing visually stimulating? Do school districts think our students with disabilities will learn more if there is nothing but plain green walls to distract them? Why aren't there 'spirit' posters and announcements of school dances in the 'special education' hall? In fact, why is there even a 'special education' hall?

How can we expect our children with disabilities to learn and grow at their day support programs when they dread going there? Why can’t there be celebrations and joy in the places they spend the majority of their day - maybe ice cream sundaes and cupcakes with rainbow sprinkles? Why can't the staff smile more - do they really hate their jobs as much as their faces seem to say? Why must their lives be filled with darkness and gloom? Again, a little paint would go a long way to improving everyone’s moods.

I wish I had the time and money to paint, refurnish, and refurbish these places. I’m convinced that we would see improved moods and improved behaviors if environments were improved first.

A Virtue

Pretty much everything we do as a family takes a long time.

When we decide to go out, we have to start getting ready at least 30 minutes before we need to leave. Backpacks need to be packed - medicine needs to be packaged - trips to the bathroom need to be made - extra food needs to be brought - and 'diversions' need to be remembered. I feel like we are being spontaneous if we get out of the house in under 20 minutes.

Getting two children in wheelchairs into our vehicle takes a while also. Then making sure everyone is buckled in and nothing has been forgotten, and we are usually pulling out of the driveway in another 10 minutes.

When we arrive at our destination, we reverse the process - and it takes a while. Chairs unloaded - children loaded - backpacks and other paraphenalia accounted for - there goes another 10 minutes.

But it's when we are leaving a public place - a store or restaurant for example - when our slowness seems to really irritate people. Whether it's the person waiting for our parking spot, or the people whose paths we are blocking with the wheelchair ramp - often they really get annoyed with us.

I've also noticed that annoyance on school mornings when the bus arrives. As with our vehicle, lowering the wheelchair ramp, backing Ronnie's wheelchair onto it, making sure the safety strap is in place, then raising the ramp into the bus takes a few minutes. After Ronnie is on the bus, then it is Ashley's turn to walk to the front of the bus and board via the steps. She can't board the bus until Ronnie is on because the bus aide must be there to assist her up.

There are usually 3-4 cars stacked up in either direction waiting for the bus to turn off the flashing red lights, and I can read the impatience on the driver's faces. Sometimes a driver will get so impatient that they will turn their car around and take another route.

Why the annoyance? Why the impatience? I really don't try to go slowly - it's just the way things are for my family. And really, is an extra five minutes such a burden to others?

Celebration Not Contemplation

Sometimes you just can't make us parents of children with significant disabilities happy.

When our child who has had 2-3 seizures a day for the last 5 years suddenly goes a week without a seizure, we wonder what's wrong. We worry about some new twist in our child's complex medical situation rather than celebrating a week without a seizure.

When our child who hasn't slept through the night ever (and they are 14 years old) suddenly starts sleeping 6 hours straight, we still get up every hour to make sure they are still breathing.

When our child who has never let anything but water, room temperature water, pass through their lips decides one day to pick up our glass of iced tea and chug it, we look on in disbelief and then start looking for whatever caused the universe to shift.

We, or actually I should say I, need to learn to relax more. I need to accept that there are just as many good things as bad things going on in my child's complex little body. Sometimes I won't be able to find explanations for changes. I just need to accept change as a part of my child's normal growth and maturation process.

I need to celebrate all the good moments even if I can't explain them, because if I can't do that, how can I ever expect my child to do likewise?

Building Great Cathedrals

Monica, one of the best moms in the world to one of the most beautiful little girls in the world sent me the article below. I loved it and know you will also.

The Invisible Mother ......

It all began to make sense, the blank stares, the lack of response,
the way one of the kids will walk into the room while I'm on the
phone and ask to be taken to the store. Inside I'm thinking, 'Can't
you see I'm on the phone?' Obviously, not.

No one can see that I'm on the phone, or cooking, or vacuuming the
floor, or even standing on my head in the corner, because no one can
see me at all. I'm invisible. The Invisible Mom. Some days I am
only a pair of hands, nothing more: Can you fix this? Can you tie
this? Can you open this?

Some days I'm not a pair of hands; I'm not even a human being. I'm a
clock to ask, 'What time is it?' I'm a satellite guide to
answer, 'What number is the Disney Channel?' I'm a car to
order, 'Can you pick me up at 5:30?'

One night, a group of us were having dinner, celebrating the return
of a friend from England. Janice had just gotten back from a fabulous
trip, and she was going on and on about the hotel she stayed in. I
was sitting there, looking around at the others all put together so
well. It was hard not to compare and feel sorry for myself. I was
feeling pretty pathetic when Janice turned to me with a beautifully
wrapped package, and said, 'I brought you this.'

It was a book on the great cathedrals of Europe.

I wasn't exactly sure why she'd given it to me until I read her
inscription:

'To Charlotte , with admiration for the greatness of what you are
building when no one sees.'

In the days ahead I would read - no, devour - the book. And I would
discover what would become for me, 4 life-changing truths, after
which I could pattern my work:

1. No one can say who built the great cathedrals - we have no record
of their names.

2. These builders gave their whole lives for a work they would never
see finished.

3. They made great sacrifices and expected no credit.

4. The passion of their building was fueled by their faith that the
eyes of God saw everything.

A legendary story in the book told of a rich man who came to visit
the cathedral while it was being built, and he saw a workman carving
a tiny bird on the inside of a beam. He was puzzled and asked the
man, 'Why are you spending so much time carving that bird into a beam
that will be covered by the roof? No one will ever see it.' And the
workman replied, 'Because God sees.'

I closed the book, feeling the missing piece fall into place. It was
almost as if I heard God whispering to me, 'I see you, Charlotte. I
see the sacrifices you make every day, even when no one around you
does. No act of kindness you've done, no sequin you've sewn on, no
cupcake you've baked, is too small for me to notice and smile about.
You are building a great cathedral, but you can't see right now what
it will become.'

At times, my invisibility feels like an affliction. But it is not a
disease that is erasing my life.

It is the cure for the disease of my own self-centeredness. It is
the antidote to my strong, stubborn pride.

I keep the right perspective when I see myself as a great builder.
As one of the people who show up at a job that they will never see
finished, to work on something that their name will never be on.

The writer of the book went so far as to say that no cathedrals could
ever be built in our lifetime because there are so few people willing
to sacrifice to that degree.

When I really think about it, I don't want my daughter to tell the
friend she's bringing home from college for Thanksgiving, 'My Mom
gets up at 4 in the morning and bakes homemade pies, and then she
hand bastes a turkey for three hours and presses all the linens for
the table.' That would mean I'd built a shrine or a monument to
myself. I just want her to want to come home. And then, if there is
anything more to say to her friend, to add, 'You're gonna love it
there.'

As mothers, we are building great cathedrals. We cannot see if we're
doing it right.

And one day, it is very possible that the world will marvel, not only
at what we have built, but at the beauty that has been added to the
world by the sacrifices of invisible women.

What About The Leftovers?

Leftovers – lots of leftovers – turkey, gravy, yams, stuffing, green beans, rolls. One of the best things about Thanksgiving dinner is having leftovers for the next few days. One of my favorites is a hot turkey sandwich – leftover turkey piled high on leftover yeast rolls and then covered in leftover gravy. After a few days, we are driven to get creative with the leftovers, but to me, they are still just as good.

Did you know that a lot of the children in foster care, children waiting for a family to call their own, feel like leftovers? They have watched their friends and sometimes their family members get adopted, but they still wait. The feel like the leftovers that everyone has grown tired of.

But just as we get creative with our Thanksgiving leftovers, we can get creative with the children who wait for a forever family. It’s certainly not going to be easy to bring a teenager into your family, a teenager who has been rejected so many times that he will try to reject you. It’s not easy to bring the group of three siblings home to your quiet, clean house, but trust me, they won’t have much to bring with them to mess up your house. Or the child with significant disabilities that is spending her life in an institutional setting – all she wants, even if she can’t verbalize it, is to wake each morning with the knowledge that she is loved and wanted.

As National Adoption Awareness Month draws to a close, I implore you to examine your lives closely and see if there is any way possible that you can bring home a child who believes he is a leftover that no one wants.

Happy Thanksgiving

This is a tough year to be thankful. I’ve even stopped watching the nightly news because the continued talks about the failing economy, home foreclosures, layoffs and such depress me greatly. Yes, I am probably just sticking my head in the sand, but now, especially during the holidays, I don’t need to be depressed.

I don’t believe there is any person among us who has not been touched in some way by the grim economic situation this country is facing. But, I have to keep telling myself, and my sons because they worry also, that this is part of a cycle. Perhaps it is time for the greedy world of wants and not needs to get a wake up call. It’s hard though, especially for a child, when they haven’t experienced the full cycle before.

I do believe that as parents we need to make sure our children do not get too preoccupied and concerned with the gloom and doom. We can create lessons to be learned, but we, or at least I, don’t want to create anxiety.

So for today, let’s all find something for which we can be thankful. Be it small things or big things, I believe we can all find something. Share those things with your children, and ask them to share with you their list of thanks.

Our world, though troubled, is still a beautiful, special place to live and grow.

Happy Thanksgiving!

My Sorority Sisters

I didn’t belong to a sorority when I was in college, but I feel like I belong to one now.

I ran into one of my sorority sisters in the parking lot at Target yesterday. She, like I, was struggling to get a wheelchair out of the back of a vehicle. The slight smile on her face told me that it was just as difficult for her as it was for me.

Another sister and I connected at the restaurant where I was picking up dinner on Saturday night. Her son with Down Syndrome was very loudly telling everyone at the bar why they shouldn’t be drinking. His mom looked into my eyes, then noticed my daughter shredding all the napkins while waiting for our pickup, and a look of absolute understanding passed between us.

My sisters are everywhere – in the hair salon holding their daughters in death grips and hoping for a passable haircut – at the grocery store putting as many items back on the shelf as they take off the shelf – in the waiting room at our children’s hospital tube feeding their teenagers – and standing outside the women’s restroom trying to decide how they will help their almost-adult son with his toileting needs.

No matter what town I visit, my sisters and I recognize each other. We don’t have special handshakes or secret words or sappy songs we sing. We have our children and the unshakeable knowledge that we are not alone.

Thank You

In honor of Veteran's Day 2008, I want to say thank you to Grampy, Great Grampy, Dad-Dad, and all the others who have given so selflessly to ensure this life my family is enjoying.


A Proclamation by the President of the United States of America

On Veterans Day, we pay tribute to the service and sacrifice of the men and women who in defense of our freedom have bravely worn the uniform of the United States.

From the fields and forests of war-torn Europe to the jungles of Southeast Asia, from the deserts of Iraq to the mountains of Afghanistan, brave patriots have protected our Nation's ideals, rescued millions from tyranny, and helped spread freedom around the globe. America's veterans answered the call when asked to protect our Nation from some of the most brutal and ruthless tyrants, terrorists, and militaries the world has ever known. They stood tall in the face of grave danger and enabled our Nation to become the greatest force for freedom in human history. Members of the Army, Navy, Air Force, Marines, and Coast Guard have answered a high calling to serve and have helped secure America at every turn.

Our country is forever indebted to our veterans for their quiet courage and exemplary service. We also remember and honor those who laid down their lives in freedom's defense. These brave men and women made the ultimate sacrifice for our benefit. On Veterans Day, we remember these heroes for their valor, their loyalty, and their dedication. Their selfless sacrifices continue to inspire us today as we work to advance peace and extend freedom around the world.

With respect for and in recognition of the contributions our service members have made to the cause of peace and freedom around the world, the Congress has provided (5 U.S.C. 6103(a)) that November 11 of each year shall be set aside as a legal public holiday to honor America's veterans.

NOW, THEREFORE, I, GEORGE W. BUSH, President of the United States of America, do hereby proclaim November 11, 2008, as Veterans Day and urge all Americans to observe November 9 through November 15, 2008, as National Veterans Awareness Week. I encourage all Americans to recognize the bravery and sacrifice of our veterans through ceremonies and prayers. I call upon Federal, State, and local officials to display the flag of the United States and to support and participate in patriotic activities in their communities. I invite civic and fraternal organizations, places of worship, schools, businesses, unions, and the media to support this national observance with commemorative expressions and programs.

IN WITNESS WHEREOF, I have hereunto set my hand this thirty-first day of October, in the year of our Lord two thousand eight, and of the Independence of the United States of America the two hundred and thirty-third.

GEORGE W. BUSH

You Really Don't Have to be Perfect

I mentioned yesterday that November is National Adoption Awareness Month. Although I have tried over the past two years of writing this blog to express what a profound difference adoption has made in my life, I'm still not sure I have fully explained it. And, maybe I can't. Maybe it is something you will have to experience for yourself.

Please take a couple of minutes to watch these public service announcements. They are only about 30 seconds each, and then look into your hearts and see if there might be room for a child who waits for a family to call their own.

Acceptance

How do you define acceptance? What does the word mean as it relates to you or your family member with a disability?

Do you get angry if you think people are not accepting, and I don’t mean just a token acceptance?

Do you feel like all, most or none of the people in your life accept your family member with a disability?

Have you done things trying to force people to accept your family member with a disability? If so, have they worked?

Have you given up on trying to make people accept your family member with a disability? If so, was it an easy choice and does it remain easy to live with that approach?

How does your family member feel about acceptance? Do you believe they are happy with the circle of people around them at this particular time, or do they wish for more?

I’m dealing with the whole issue of acceptance and could really use your advice…

I Do

As a parent, do you ever feel like you should be doing more for your children?

I do.

Do you wish you had more time and more energy, and do you worry that your lack of those two things will have an extremely negative effect on them?

I do.

Do you wonder what your children see when they look at you? Do you wonder if it good or not so good?

I do.

Do you worry that they may not completely understand your decisions to fight the battles you feel are important to their health and well-being?

I do.

Do you sometimes feel like you might not be fighting the right battles - that perhaps you are focusing on the wrong things?

I do.

Do you think they resent that you are at their school so often, talking to staff and administrators, and that perhaps they would just rather you be at home with them?

I do.

Do you worry that they are tired of seeing you challenge doctors and nurses, even if the challenge is in your child's best interest?

I do.

Do you think they feel the deep abiding love you have for them when you are fighting 'systems'?

I do.

Do you set your health and well-being aside so that your every thought and action is related to making them happy and prepared for a life without you?

I do.

Even though you are completely drained and exhausted beyond words, do you still have a tough time saying 'No' when someone asks for help, help you know you have the expertise to provide?

I do.

Do you look at other children - foster children, homeless children, children not receiving what you think they deserve - and want deep down in your heart to take them all home with you? Do you feel utterly depressed that you can't make the world a better place for them?

I do.

Do your fear your child's death before your own, but then also wonder what will become of them if you are no longer there to take care of them?

I do.

Does your heart just ache sometimes because you can't take away all the pain and rejection your children will encounter?

Mine does.

Do you pray for answers and strength to keep going when somedays you would just rather curl into the fetal position under your bed covers?

I do.

And do you feel that all you do accomplish is 'worth it'?

I do and it is, it really is....

Hard to Watch - Hard to Understand

If you have a child who engages in self-injurious behavior, you know how terribly upsetting it can be. Watching a child slam their fist into their head, pick at their gums or fingers until they bleed, or even bite themselves and break the skin is something no one should have to endure. But many of you know that this is common behavior for a child with significant disabilities.

My experience with the school system and with many medical professionals is that they would rather try to control the self-injury with medication - and sometimes that is really strong medication with significant side effects. For years I have fought my school system to assist me in finding the reasons for Ashley's self-injurious behavior, and even though they agree to do their version of a functional behavior assessment, the result has usually been restraint. And that restraint does nothing but increase Ashley's frustration which causes the self-injurious behaviors to increase.

For years, I have insisted that the behaviors were a direct result of lack of communication. The school system and many of the doctors scoffed at that idea. Yet, when Ashley did finally get a teacher who believed in her, and a school setting that was appropriate, the behaviors all but stopped.

With each new school year, with each new school placement, with each new teacher - I wonder if the behaviors will resurface. If they do, my campaign to educate the educators will again kick into high gear. And last night, I found one of the best articles on self-injurious behaviors I have ever read.

Written by a gentleman who is autistic, the article on stopping self-injurious behavior is excellent. I urge all parents and educators to take just a few moments to read the article I have linked to below. I promise you will come away with a much better understanding and approach.

Stopping Self-Injurious Behavior

The Miniature Earth

My son, Chip, told me about a website that he found very interesting. When I visited it myself, I understood his interest. The Miniature Earth Project asks the question, "If we could turn the population of earth into a small community of 100 people and keep the same proportions that we have today, what would it look like?"

Also from the website, "The idea of reducing the world’s population to a community of only 100 people is very useful and important. It makes us easily understand the differences in the world.

There are many types of reports that use the Earth’s population reduced to 100 people, especially in the Internet. Ideas like this should be more often shared, especially nowadays when the world seems to be in need of dialogue and understanding among different cultures, in a way that it has never been before.
The text that originated this webmovie was published on May 29, 1990 with the title “State of the Village Report”, and it was written by Donella Meadows, who passed away in February 2000. Nowadays Sustainability Institute, through Donella’s Foundation, carries on her ideas and projects."

A visit to the website will be well worth your time. One of the facts I found most interesting was that out of 100 people, 9 would be disabled. That means almost 10% of the earth's population is disabled? If so, we the members and advocates of that community should have the power to make some major changes for the better.

Money Woes?

As a follow-up to yesterday's blog post, my friend, Jane, shared this news item about making money accessible to people with blindness. Apparently, Jimmy Barrett, a morning radio news personality at one of our local radio stations made the issue his Question Of The Day, and took a poll on how his listeners felt. The lead-in to the poll was:

Is This a Fair Accommodation For The Blind?

A U.S. Appeals Court has ruled that the U.S. Mint needs to make our paper currency more friendly for the blind. The Euro for example comes in different sizes depending on denominations. It also includes a foil seal that a blind person can feel for additional information on the bill. The court is not suggesting that we go back and redo all of our old currency, but they want a plan put together for the future. I wonder what might be next? There are all sorts of areas where we still don't have special signage for the blind. The grocery store, retail merchants. What about using a debit card? How far can we go for those who have sight issues? It's my Question of the Day.

And here are the poll results:

BEST WAY TO FIX THE PAPER CURRENCY PROBLEM FOR THE BLIND:

15.85 % - Make the bills for different denominations different sizes.
14.63 % - Make bills with Braille.
69.51 % - It's too expensive to fix. You can't make accommodations for everyone.

Do these numbers surprise anyone? How do they make you feel? Do you agree or disagree?

Lost Then Found

We live in a society that seems to have forgotten the virtue of patience. We have drive through fast food, drive through banking, and drive through pharmacies. A great deal of our shopping is done online, and we don’t even have to spend time driving to and from the mall. We TIVO shows on television so we can watch them when it is convenient, and while watching them, we fast forward through all the commercials. We cook a lot of our food in microwaves because it is faster, and we often buy whole meals, precooked, at our local markets. We rush through schedules and plans, keeping calendars that are so full of appointments that we often can’t even read what day it is. In fact, I personally have to schedule my down-time just so I can be sure I get some. But there is one place where having patience has really paid off for me – raising my son, Corey.

I’ve written about Corey three times in the past. First I introduced you to his early life, life before he joined my family. Then I talked about his Eeyoreness, and finally I wrote about his idiosyncrasies. But now, almost three years since he joined my family, I believe Corey is changing for the better.

He seems more settled into his skin these days. He seems happier, except when teenage angst takes over as it will with any teenage boy from time to time. He is getting better grades in school. He has a girlfriend and from all reports, seems to be handling his first boy-girl relationship better than most 15 year old boys. He remembers his chores – most of the time. His personal grooming habits are improving. He seems to be sleeping better. But the one thing that told me a change has really taken place in the life of this once-lost boy is what he wrote in my Mother’s Day card.

Inside the card which he had made for me were the words, “thank you for always being there for me. I love you.”

Yes, patience can pay off – in many wonderful and unexpected ways.

If Only I Could Hear the Words

It’s Mother’s Day and I am feeling things that are not as warm and fuzzy as this day warrants. I have four children – four children who have made amazing strides under my mothering. My birth son is graduating from high school next year. He has a future before him that is only limited by his own dreams. The three children who have joined my family through adoption are living life is a way that never would have been possible without me. That may sound a little conceited, but it’s true. And not only are my children’s lives enriched by being in our family, my life is enriched more than I ever imagined. So why the less than positive feelings and thoughts?

The only one of my children that has even acknowledged Mother’s Day is my birth son. The other three have not. Due to her cognitive disabilities, Jessica probably doesn’t even grasp the concept of Mother’s Day. Corey, because he spent 12 years with a person who didn’t deserve the title of Mother, has probably buried all the “Happy Mother’s Day” thoughts deep in the recesses of his brain. And Ashley, the child who every day tells me in many unconventional ways how much she loves me, can’t say the words. I will never hear her sweet voice utter “Happy Mother’s Day”.

I know, I know – things could be a lot worse. At the moment, all my children are healthy and happy. Jessica’s problems with aggressive behaviors have subsided somewhat. Corey made honor roll at school, something no one ever believed possible, and Ashley is healthier than she has been in a long time. But this is my day, and if I want to whine, I believe I have the right.

How do other mothers who have children with significant disabilities get through Mother’s Day each year? I really need some pointers.

A Life of Riches

America’s economic crisis is now becoming my economic crisis. When I first began hearing the dire news a year ago, I didn’t feel the impact so much. But now, probably like most Americans, thoughts of money and bills and the future dominate my days.

My family has made a lot of changes in an attempt to weather the crisis. And, my initial reaction to making the changes was one of suffering, not being able to live my life as I had been. I have, however, changed my perspective a bit these last few weeks.

As I have listened every night on the evening news about the U.S. either heading towards a recession or as some financial analysts believe, already in a recession, I decided to look for something positive in these changing times. And, it really wasn’t hard to find the silver lining to the economy’s cloud.

First, my family doesn’t eat out very much anymore. Whether it was fast food, carryout, delivery, or a sit-down restaurant, we had been eating out 2-3 times a week. Now, once a week is considered a treat. What’s the positive? It’s a whole heck of a lot easier to eat healthier when you prepare the meals yourself. My children have even commented on how much better they feel in the last few months. I’m not sure they have made the connection from feeling better to healthier eating, but it is obvious to me.

Secondly, we stay home a lot more these days. We don’t just jump in the car and go places like we used to. We plan our trips more, and as a result, trips have become something to look forward to. We spend a lot more time as a family, sitting together in our family room, playing board games, watching TV shows together, reading, and having some great conversations.

My children ride their bikes more and that means increased exercise. We live close to a library, so they often ride to the library to check out books. More money saved. My oldest son visits freecycle.org frequently, posting items we no longer need but someone else may have a use for, or looking for items we might be able to use – and as the title of the website says, it’s FREE. We walk around the neighborhood more. We are meeting and visiting with our neighbors and really building a sense of community that often was missing in the busy, hectic lives everyone used to live.

Those are just a few of the positives. I’ll bet we could come up with a long list if everyone really tried. Gas at $4 a gallon still really hurts – the cost of groceries still causes a great deal of worry – major, unplanned expenses can still send me reeling, but I am determined to find some good in all this. And I hope that ‘good’ means my family grows wealthier in ways that don’t include money.

Now I Lay Me Down To Sleep

I have failed miserably at one of the responsibilities of parenting – teaching my children good sleeping habits. It certainly hasn’t been for lack of trying though. I have done most if not all of the things that parenting ‘experts’ recommend. My children have always had specific bedtime schedules, and because of my well-honed OCD tendencies, we almost never veer from those schedules. My house is quiet and calm in the evening. Sugar is limited or not available at all. No video games are allowed and no disturbing television shows are on. The house is not too hot or too cold. Everyone is bathed and clean, and extra attention is given to calming routines such as using lavender lotion following a bath. Books and quiet activities are encouraged after dinner, and everyone is well fed. So why won’t my children sleep through the night?

If this were only a problem with Ashley I could attribute it to her deafblindness – the whole getting days and nights mixed up thing. But it involves all my children. My oldest son, Chip, didn’t sleep through the night as an infant until he was 15 months old. He wouldn’t go to sleep up until he was 8 years old unless I was in the room with him. I know, I know – many strategies exist for breaking that habit. I tried them. He would just always come into my room later in the night and sleep on the floor beside my bed. I wouldn’t know he was there until I tripped over him the next morning. Fortunately, as a teenager he has outgrown that, and his sleeping routine is his own.

I can justify Corey and Jessica having difficulties sleeping based on the trauma of their pasts. Jessica was 9 years old when she joined my family. Perhaps the abuse of her first 9 years has had a profound effect on her ability to feel safe during the night. The same goes for Corey. He spent many years living on the streets, and didn’t join my family until he was 12 years old. More than likely the horrors of his past keep him awake at night. But after many years in my family, shouldn’t sleep come a little more easily for both of them?

Ashley’s wakefulness could indeed be due to her deafblindness – or maybe she is having seizures during the night – or maybe it is just some other quirk of her interesting medical profile. Even with her, though, I would have thought all my attempts to improve her sleeping habits might have had at least some sort of positive effect.

Worse than the sleeping habits of my children are my own. I am exhausted almost all the time. So why then when I do get a few hours when all my children are asleep I still sometimes stay awake? I know what I am doing wrong – I lie in bed and worry – worry about the upcoming IEP meeting – worry about everyone’s health – worry about yet another insurance fight – worry about money – etc. etc. etc. It seems the worry is bigger than the exhaustion, and the sheep jumping over the fence in my brain are getting tired of being counted.

What can I do? I need strategies for setting aside all those thoughts that take over my mind in the middle of the night. I need techniques for getting myself to sleep even if I am awakened by one of my children. They go back to sleep – why can’t I?