The Future?

I have to admit, I am a HUGE nerd! As a kid I was Princess Leia every Halloween. I love science and geek out often with sci-fi movies and tv shows. Lately I have gotten hooked on a new show on AMC called Humans. The show is all about humanistic androids living amongst us.

While to purchase your own "synth" (what they call the androids) is very expensive and something reserved mainly for the wealthy, they have medical synths that are loaned out to patients needing home health care. As a MOM that relies HEAVILY on nursing care for my daughter, this really gets me thinking.

Now I know, the chances of this type of advancement ever- much less in my lifetime- is slim to none. It is fun to think about though. The insurance companies send out a synth to the patients home. This synth then does EVERYTHING. They have built in technology to monitor vitals, change diapers, suction, do the feeds, push meds, monitor vents, help with baths, do some range of motion, ,they can drive the patient to appointments, they can go the grocery store, they clean the house, cook dinner, they really do everything. The best part- they don't need time off!!!

We LOVE our nurses and honestly I would be lost without them. They all have their own lives though- and that's a good thing. They need time to go home and sleep, see their own families, cook their dinners, take care of their own needs. They also need a break from time to time- AKA- vacation. While we totally understand that this is something they need, we miss them so much while they are gone. If I was working out of the home and had a healthy child, I would take time off and vacations too. I never get angry about this; I really do understand and know I would do the same if I were in their shoes. That being said, I do dread when they take time off.

Many of my friends and family look forward to the weekends, holidays, spring break, etc. I dread them! I know that a holiday means that most likely some if not all of our nurses will take time off. This means that for 24- however many hours until they return it is just my husband and I taking turns sleeping and taking care of our daughter. She requires someone to be alert and watch her 24x7. Usually if there is not a night nurse I stay up all night and then drag my husband out of bed around 6 to take over while I get some sleep. We love our daughter and this is not intended to sound like I am complaining. I am just fantasizing about having a "synth" of our very own.

On nights that the night shift call outs I could charge the "synth" all day and then get some sleep while it takes watch. If my husband is traveling for work and I need to run to the store, but there is not a nurse here to watch my daughter I can either send the "synth" to the store or have it watch my daughter while I go. I would not have to feel guilty about it missing out on it's families events in order to help us celebrate ours.

We have recently been in the process of finding a new night nurse. We have 2-3 nights a week covered consistently, but since May I have been staying up the other 4-5 nights and then sleeping all day. We hope to soon find a good fit to fill these night shifts so that we can get back to living our lives. Sadly I feel we have missed most of our summer already. I sleep all morning while the day nurse (luckily our day nurses have been picking up a lot of extra hours and shifts and our remaining night nurse picks up that extra night as often as she can) is here then get up just in time to shower, eat and do the "must do" items on my list before the day nurse has to leave. We have missed out on lots of swimming, play dates, outings, and even doctor appointments have been getting canceled and rescheduled. On my long night shifts I spend a lot of time fantasizing about having a "synth". Oh to dream! Heck, since I haven't been sleeping much I guess daydreaming is the closest thing I get to real dreams.

So you know what this tired MOM wishes exists to help make my life easier, what types of things to you imagine/fantasize about to help you and your child get through the day?



NOTE- I should point out that in the show they use "synths" for many other non-medical related tasks as well- some that are not appropriate for this blog. So, if you do decide to watch this show and fantasize about your own home health "synth" just a heads up/warning it may not be a show to watch with the kids.

Why my Daughter With Autism Wears her Hair in Cornrows; Even Though WeGet Strange Looks

Our daughter has always marched to the beat of her own drum.  From the moment she came to this world we know she was like no other.  She brought a strange peace about her, which as long as we could keep her body in balance, maintained.  She could swing for hours in her baby swing, just staring at the lights above her.  We didn’t know at the time that she had autism.  We wouldn’t find out for years to come.

She loved to cover herself in food as a young toddler.  A bowl of yogurt would calm her down.  She would wear it from head to toe, but washing it off made her angry.  We of course couldn’t allow her to walk around coated in yogurt, we had to find other ways to keep her calm.

She always loved it when I would play with her hair, even before she could speak to let me know.  The pulling of her hair seemed to calm her.  Even when she would let out a grunt to let me know the pony tail was too tight she remained calm, yet she would scream if she touched water as if water were acid burning her skin.  None of her body seemed to work the same as ours.

We started off with pigtails, but soon she began pulling them out only to get me to put them back in.  We added more and more pony tails.  The more she had the more she seemed to calm down.  It was then that it hit me, our daughter’s hair being done was what calmed her.  She could have it brushed for hours, but really what she liked was the tightness of having it pulled, and so that is when the braiding began.

It amazed me that the same child who could not sit still on the couch long enough to have a shoe put on, or stop herself from shrieking and arching in the car could sit peacefully to have her hair pulled on to be braided, but without question it brought her peace so it brought me peace as well.

She is now seven years old and her braids are now a retreat.  There are many reasons why we continue to row her hair “as needed” despite the fact that she faces some adversity at school and in public.  Other than the sensory aspect, our daughter thinks her hair is beautiful that way.  She loves her friends who wear their hair in braids and rows and though their skin colors may be different shades than hers she does not see the world through the looking glass that is tainted by a soured world that has been created by flawed and tattered patterns of thinking.  It has taught her how to stand up for herself.  She has learned to speak directly to people to tell them if they do not have something nice to say to her then she would prefer they left her alone.

It stops her from chewing on her hair.  As part of her autism, nearly everything goes into her mouth.  Her hair is in her mouth nearly constantly.  When we take the time to make her hair “beautifully braided” she makes a conscious effort to remind herself to break away from sensory behaviors that are unhealthy.

It teaches her patience.  In no way is it a quick and easy hair style.  She has learned over the years to sit for longer and longer amounts of time without squirming, even if she stims, she has to hold still enough to get her hair just how she wants it.  It has been a wonderful tool in teaching her to learn to feel her body and be able to control its motions.

It helps us spend time together in a positive way.  It helps us connect.  Human connection on a personal level is not always easy for a child with autism.  The more times she sits for braids, the more I get to learn about her.  Her body is nearly always busy, and when it isn’t she prefers to be alone.  This gives us a wonderful opportunity for positive connection.

To be honest when she was just a bitty bald thing swinging away staring at her mobile this is the last thing I thought I would be doing seven years later, but this is what mothers do; anything in their power to make a positive connection with their child, to help them thrive and grow.  Be it cornrows or ballet a mom’s got to do what a mom’s got to do.

Fun at the Cafe

17 years ago, a group of people in Florida began the tradition of an annual conference. The first and second were day long events held each in a different part of the state. The idea was to bring people with disabilities and their families together for an informational and uplifting experience, meeting venders, having an opportunity to speak to service providers and just being able to pick the brains of educators, legislators and professionals who had much to share.

As the years past, The Florida Family Cafe grew into this enormous 3 day event, always held in Orlando which has many conereence center hotels and is in pretty much the easiest part of the state to get to. The event itself is always free to the attendees with hotel accommodations provided at a group discounted rate, making it affordable to most of the community. It has grown now with 9-15 thousand people going through the event in the 3 days.

The conference is always on the first weekend in June. We just returned from this year's event. Most years we have a governor's summit to start off, but this year Florida was in emergency session and our legislatures were unable to attend. We did, however, see videotaped addresses and were able to have questions and answers by a panel of highly ranked administrators. We had many issues covered, from IEP's to Transitioning into the workforce. Adaptive sports (including archery), equipment, therapies, and ADA representative, Disability attorneys, lawyers and financial advisers and so much more were present. You can see this year's program for more details on what is in included.

There is time for fun as well. The children can be left in a special daycare setting while the parents attend important workshops. On Saturday there is a dance with a DJ, food and time to kick back and meet and greet new and old friends. The pool was awesome and there was time to go for a swim. The hotels are always chosen to give everyone the best possible adventure while gaining incredibly worthwhile info. It is worth attending if you are a resident of Florida and in the area and. If you are not local, it would be great to encourage some organizations or the government to begin something like this in your area. If you would like to find out more about it contact:

Florida Family Cafe
519 N. Gadsden St.
Tallahassee, FL 32301

5 Fun Uses for A Giant Cardboard Box

Via Berry Sweet Baby
I've always loved the book, "This is Not a Box," by Antoinette Portis because of how it encourages children to use their imagination to play. I remember vividly the joy of playing with a giant refrigerator box as a child with friends. We hid in it. We made it into a fort. We rolled down hills in it--which may have been ill advised, but it was a ton of fun! Looking back, I'm sure our parents probably shook their heads watching us play, thinking about all of the money that they had spent on pricey toys that we would quickly abandon, but how this huge cardboard box could keep us happy all day long.

The giant cardboard box never goes out of style, you may even see adults getting in on the fun. If you're not expecting any large deliveries, think about ordering one from stores like Office Depot, Lowe's, or Uline. For under $10, you may be able to help your family create some wonderful memories. Here are five suggestions to help your family have a ton of fun with a giant cardboard box.

Travel Through Space
Encourage your kids to use their imagination and maybe even sneak in a science lesson with this super cool, kid-sized rocket! Here is a tutorial to help you make a rocket like this using supplies that are almost entirely recycled from your home including baskets, yogurt cups, foil,and soda caps.
Via Fun at Home With Kids

Make Game Time a BIG Deal (while improving math skills)

I don’t know that I would call these boxes "giant," but they certainly look like a fun way to upgrade game time. These giant dice are easy to build with contact paper, black construction paper, tape and glue. Parents.com features a quick tutorial to help you build them and also provides examples of games that you can play with your kids to help them improve their addition, subtraction, and multiplication skills. No one needs to know that this is an educational activity, but you!

Via Parents.com[/caption]

Create a Reading Nook

Fashion a space that is comfortable with good lighting where your kids can curl up and enjoy a book. A cool, "kids only" space will help remove any stigma that your child may associate with reading like homework or chores. Make their space so special that going in to read feels like a treat. Via Pinterest

Make the Backdrop for Your Own Movies

Okay, so you don’t have to go totally low-tech to enjoy cardboard boxes. In my experience, kids love seeing themselves on video. Encourage your kids to re-enact their favorite movies or to write their own scripts. They don’t have to be long, even two minute skits will help increase their confidence, creativity, and verbal skills. Once the script is written, work with your kids to build the perfect movie set using cardboard boxes. Depending on your child’s age and your tech-savvy, you can also use toys like action-figures and cars to make fun and easy stop motion animation videos.
Via CamilliaEngman.com

Go Into Business!

Remember how fun it was to play work? Before we knew about bills and rush hour traffic, right? Allowing your children to set up a shop though will teach them valuable teamwork skills and instill a sense of responsibility. Younger children may like to pretend they are running a bakery or a grocery store, while older children may actually be able to use this setup to start a lemonade stand, helping them learn math skills and the value of a dollar.Via iKatbag[/caption]

For more ideas and inspiration, head to Modernize.com.

This post was written by guest blogger, Danielle Hegedus.

Danielle Hegedus is a freelance writer based in Atlanta, GA where she currently writes Modernize and nurtures her obsession with HGTV and all things home design.

What do You do When You Find Your Child Has Eloped

You implement all the proper talks and teachings, the dangers that come with impulsive behavior.  You think that it won’t be your child.  You think that they will always come to you, trust you, and remain within the boundaries that have been set for them by you as their parents, guardians.  So, what happens when even after all of that you find them in the middle of the night doing everything within their power to elope? Worse yet, what happens if you find out they have been successful? You are crushed right? What if it wasn’t your teenager we were talking about? What if it wasn’t a boy they were running off to see? What if marriage had nothing to do with it?

If you are like me perhaps the only usage of the word “elope” you knew of involved young adults and teens running off to get married without their parent’s knowledge.  It was an act that was hurtful, disrespectful, and sometimes depending on the situation even dangerous.  Even if you were to “google” the word elope you would come up with hits such as “elopement packages,” “5 elopement packages for low key couples,” “elopement (marriage),” but other than young adults/teens looking to get married in a hurry or couples looking to get married privately there is another much more dangerous version of elopement many have heard about, but very rarely would associate with the term.

So What is Eloping?

Even if you were to look the term up in a dictionary, it has it listed in several different ways, but all of the definitions I have incurred add up to one thing “a secret departure, with no known whereabouts, especially to become secretly married or cohabit with a loved one.”  These definitions only carry a half truth, and this is something that needs to change, especially to those of us in the special needs community who have loved ones who engage in eloping, no pun intended.

Eloping is very common in children with Autism Spectrum Disorder, and it has nothing to do with marriage.  According to Abby Twyman “Elopement is when a person leaves an area without permission or notification which usually leads to placing that individual in a potentially dangerous situation,” (Twyman, Abby M. ED, 2012).  Elopement happens very frequently within the Autism community almost as often as seen in the Alzheimer’s community.   Usually the likelihood of elopement (wandering, fleeing) increases with the severity of Autism, but can also be seen in children with high functioning autism, especially if they struggle with impulse control.  Recent surveys conducted have shown that half of all children on the spectrum have struggled with some type of eloping behavior.

Eloping is Not Just a Problem for the Nonverbal

One of the most common misconceptions, even amongst the special needs and medical community, with a child on the spectrum who wanders, is that they will only engage in such activities if they are low functioning or non verbal.  This is a frustrating and dangerous misconception.  I can tell you this from experience.  Our daughter is seven years old, and very verbal, more verbal at times than her siblings who are not on the spectrum and yet there is a difference between speaking and appropriately communicating.  There is also a difference between appropriately communicating and being able to control your impulses, have safety awareness, social awareness, and be able to link cause with effect appropriately.  We even thought ourselves the older our daughter got the less likely she would be to elope, but that has sadly not been the case.  It is a dangerous and frightening set of events in our life that unfold daily.  Trying to get her to fully register how dangerous her behavior is, is quite like trying to catch water in a butterfly net.  It just keeps slipping right on through.

I heard a statistic a few weeks ago that nearly 90% of all deaths that resulted from elopement were drowning accidents.  That same week we found our autistic daughter happily swimming in the kiddie pool out back while we were all soundly sleeping in our beds.  That was our breaking point.  The sheer terror of knowing all the possibilities was more than a wakeup call it was pure torture.  I emotionally broke down.

Please know if you are reading this and are feeling ashamed not knowing what to do about your own child’s eloping behaviors that you are not alone, and you are not an irresponsible parent.  My husband and I are well equipped with training and degrees that should make us more than qualified to be able to manage the difficulties that come with raising a child on the spectrum, but despite its ups, there are so many downs.  It is not by any means an easy sailing sea.

Our daughter has put more than grey hair on my head these past few months; escaping, making her way into neighbors’ homes, walking out the front door, making her way out or over a 6 foot privacy fence, and even  finding a way to pry open her second floor window.  We are constantly having to find solutions for all of these matters, and sometimes I do cry myself to sleep wondering if we'll ever be one step ahead of her.  At the pint size of only fourty-four inches and pounds I often wonder how she is even able to manage the physicality of some of these things, but she is, so we have to be prepared, literally at all times.

What Can be Done About Eloping

We have had to take several measures here over the past several months to keep our daughter safe.  The first step for us personally, and everyone is going to have different causes and escape routes for their child, was to remove any large furniture from her room that she could climb.  This would keep her safe from trying to open and get out her window.  Thankfully her windows are well above her head, and unless she builds a staircase of books, which she may one day decide to do, she should be safe for now.

The second thing, because she is verbal and able to tell us at least some of her needs, was to figure out what would help her sleep better at night, when she was usually trying to elope.  For her it was to not sleep in a bed and sleep in a smaller space.  So, we turned her closet, open door with a mattress, into a small sleeping cove, and she has been much happier sleeping there.  She had already blown through nearly every sleep medication out there and despite that was still having night time safety issues, so at that point we were truly willing to try anything as long as she was happy, safe, and sleeping.

The third thing was to install door alarms on her bedroom door and all of our outside doors.  We placed them high up where she cannot reach them, since they do have on off switches.  They have so far been a deterrent, and when they haven't been, we have quickly been able to catch her walking out the door.  The good news is that they are relatively cheap.  The only bad news is if your child is extremely sensory defensive you may have trouble getting them to walk out the door when you want them to.

The fourth thing we did was buy a Road ID bracelet.  This was an easy way for us to put her information down on a bracelet that was comfortable enough for her to wear, but not easy for her to take off.  That way, if she did wander and someone found her they could call us as well as be aware of the fact that she has not only autism, but some medical problems that may need to be addressed if she has been gone for any length of time.

The fifth thing we did was sign her up for a service called Project Life Saver.  I know not every area in the country has one yet, but if your area does or a similar service I would highly suggest it, even if your child has not eloped more than once.  If they have even begun toying with the idea of wandering it is time.  Project Life Saver is a bracelet with a GPS tracker in it that is run by your local police precinct.  That way when you call 911, in the case that you have to, you tell them your child is missing and is a Project Life Saver member.  They immediately can start tracking them.  It cuts their search time down to three hours down from 36 hours.  The difference between three hours and thirty-six hours is the difference between life and death for a child.

Eloping is Something We all Need to be Aware Of

Whether you are a special needs parent or not, eloping is something we all need to be aware of.  It could literally mean the difference of a child being returned home to their parents or not.  There is no type of parent who has an autistic child who wanders.  Autism and other types of special needs come with all types of struggles and eloping is just one of them.  It is very hurtful to see comments on news media posts when a special needs child wanders, from community members like; “where were the parents,” “those parents should be in jail.” “I bet the parents are scum,” “that child should be removed from the parents when he/she is found,” etc, every single time a child with autism or special needs elopes and it gets broadcast.  I will say it again, there is NO type of parent whose autistic child wanders.  It can happen to anyone and it literally only takes a second.  Even with all of our safety guards in place the scary and sad truth is our daughter could get out tomorrow while one of us is in the bathroom, because she saw a butterfly out the window she wanted to follow, or thought she heard the Ice Cream truck.

The quicker we see eloping as something we all need to help each other with, the quicker all of our children will be safer.  Let’s stand together, hold hands, form a line, and help each other out.  We can’t point fingers if we are grasping each other’s hands.

For the Days you Think you Just Aren't Good Enough

I woke up at 7:30 just like every morning, placed my feet upon the ground, but I felt heavier somehow.  My first thought was it must have been the extra cookies I had indulged in the night before, but I ate them with my eyes closed, so clearly those calories didn’t count.  It was something else and I just couldn't put my finger on it.

I stepped over my four year old son, who had weaseled his way into our room somewhere in the middle of the night, just like all the nights before.  He was absolutely angelic, like a cherub, rounded cheeks, red luscious lips, long sloped eyelashes, blond wavy hair.  Let’s forget the fact that he was still covered in tinged dirt smudges from the night before, and somehow made it into bed still wearing his day clothes.  Let’s ignore that little factoid for now.  Obviously he put himself to bed while I had my eyes closed eating cookies.  Wait, no that would make me look worse.  Clearly there was some kind of break in the space time continuum, or something else that makes me not responsible for that

I tiptoed slowly out into the hall careful not to wake him, but still dragging this extra weight I could not yet identify.  The further I walked the heavier it got, a strange little invisible weight it was.  I opened my seven year old’s door.  She was sprawled face down on a sheet-less bed, surrounded by a mess that looked as though a tornado had hit.  A tornado that had only touched down in her room? Very strange indeed.  There were bits of paper, tissue, books, clothes, and dag nab it my cookies, all around her.  Her tiny body the eye of the storm, the signal of a sleepless night in the world of autism, one that had clearly wreaked havoc on her little mind, and on my poor little house, again.  The weight pulling me down increased again.  With a deep sigh I tried to wake her.

“Time for school.”

“I’m not going,” she huffed out the side of her toneless mouth.

“Dear child, you are, let’s go.” I picked her up over my shoulder like a floppy sack of potatoes, her outfit in my other hand.  The invisible weight now pulling me down from behind, and the weight of her decisions crushing me from above, each step painfully difficult.  I make my way quietly back through the hall trying so hard to not wake any “angelic cherubs” unintentionally because Lord knows, they only stay that way in their sleep.  I make it all the way to the top of the stairs, potato sack still in hand when BAM, there at the bottom of the stairs is the four year old staring back at me, now looking like he is in deep need of an exorcism.  Seriously, how do these kids get through the house without making a single noise?

“Jelly sandwich,” he says, no “hello”, no “I love you,” no inflection, no emotion, just demands.  So it begins.

I breathe deeply, trying my best to release some of the weight that now sits on my chest, a temporary solution at best.  I flop the sack of potatoes on the couch hoping by now she has enough life in her to begin dressing herself, apparently not.  I begin drawing up meds for three of our four children, intermittently calling out things like “come on we need to get going soon,” “are you getting your shirt on?” “Please tell Mommy when I come in there that you will at least have your underwear on? Right? Hello?” Another deep breath for now.

 “Jelly Sandwich,” says the four year old.

“You will have to wait.”

“My catheter leaked all over my bed,” says the eight year old.

(Wait… where did you come in??? ugh!)

“Ok, I promise I will be right there.” I check the clock, five minutes until bus, you have got to be kidding.  I do my best to pull all the weight I am now dragging.  I move back into the living room to find that sack of potatoes is happily reading a book in her underwear.  I move in.  She stands like the girl from The Secret Garden ready for her maid to dress her, legs straight, arms out, head up, dressed in seconds flat.  We move through the rest of the routine, I feel the weight getting a little lighter for the moment.  She gets on the bus, I wave goodbye.

“Mom, my bed is wet,” says the eight year old.

“Jelly sandwich,” says the four year old.

As quickly as the weight upon me lessened it returned again.  “Hang on,” I yelled, instantly feeling guilty for my reaction.  I moved my way into my eight year olds room working as quickly as possible to help her change and change her bed, not an easy task with all of the medical interventions she has to carefully work around.  None the less, she had a clean body and clean hospital bed.  One task down.  The weight lifted again, but only for a second.

“Can I get breakfast, and can you get my backpack so I can get out of bed,” she asks?

All reasonable requests, but I realized at that point I had not woken up ready to deal with the demands of our everyday life.  It wasn't anyone’s fault, not mine, not theirs, some days it is just too much for one person to bear.  Having realized this I took another deep breath, gently pushed the hair out of her face, and whispered gently “please give Mommy a few minutes.”

I felt good about this and finally thought I had reset my day.  I worked my way out of her room having identified what the weight was.  I was feeling the burden of being overwhelmed, and simply not feeling equip emotionally or physically to handle my responsibilities.  Feeling like that especially when it comes to your children can cause an immense amount of guilt.  Nothing in my experience weighs you down quicker than guilt.

I stepped out of her room and closed the door behind.  Confronting me immediately was that curly haired boy with a burning desire for a jelly sandwich.  I picked him up and headed for the couch so that I could take a quick breather and continue trying to reset my day before it really got off to the wrong start.  As I sunk into the couch and held the warmth of my little man tight to my chest.  I felt some of the intense weight of the pressure of the guilt I was feeling ease up.  Then a voice unexpectedly entered my peace.

“Um, Mom, I overslept and missed my bus,” said the twelve year old.

(Seriously where do you guys keep coming from)?

At this point it was inevitable no matter how hard I tried I personally was not going to win at this day.  If on any level it had been allowed I just would have gone back to bed and ended the day right there, status; failed.  Clearly with; one, two, three, four children, three of which have special needs that was not going to happen.  I really had to pull myself together regardless of the fact that I wanted to let the weight of my stress pull me straight to the ground and throw a big stinking toddler tantrum at that point.  With a huge deep breath and a solid reminder that; my four year old jelly loving child had not thrown a tantrum, my seven year old with autism who had not slept all night had not thrown a tantrum, my eight year old who had to wait for a bed change had not thrown a tantrum, and the half grown boy running ramped to get ready waiting on his crazy mother who was considering having a tantrum had not himself had a tantrum, then how could I?

The fact is this life is hard, but this life is also beautiful.  We have children with special needs, children with typical needs, but we have amazing children no matter which way you look at it.  There are going to be really awful days amongst days that are really wonderful, and we can’t let the weight of those awful days drag us back from experiencing what could be waiting for us, if we just believe enough in ourselves to keep taking one more step.  There are so many days that I don't feel good enough, or strong enough for this life, but I am.  I know I am, because I did it yesterday and the day before that.  I can do it tomorrow too.

On all those days you don't feel good enough, just believe, and just take one more step.

Bessy and Harry

I'd like you to meet Bessy, She is white with some gold stripes and she is pretty huge. Bessy is our 1999 Chevy Hi top accessible van with a wheelchair lift. We purchased Bessy about 10 months ago, she was dirty, needed tires and other mechanical gizmos and gadgets, but we did not have much money so we decided to "take a Chance" so we "adopted her" and brought her home. Our search had effectively covered 3 counties, many cities and leads that just did not pan out. We finally found her, the big white hi top van with the braun lift. It needed new tires, the brakes were bad, the a/c needed to be completely overhauled. We did not realize then that we had purchased THE ORIGINAL MONEY PIT of vehicles. We woke up each morning saying a little prayer that our Big Bessy would start and carry us through the needs of the day. We did not quibble about the amount of gas she drank or the need for a emergency fund that we put aside for the moment when Bessy emergencies frowned on us.

Two days ago, Bessy decided that she needed a rest, one of many since we adopted her. Once again she decided to turn herself off and not move, worst thing was she stopped in the middle of the street and there was no way we could move her over to the side. After a few minutes of our bewilderment, the sweetest burly gentleman approached us and asked if we needed help, at least getting our lady to the side of the road. We thought he was going to bring up his truck and push but, oh how wrong we were! He went to the back of the van and without another word, pushed Bessy as my husband steered her to the side of the road!

With Bessy now safely out of the way of traffic for both her own and traffic's sake, the next "UH OH" moment occurred when we realized that the reason for the "Bessy run" was our daughter Laura's need to get to her college Spanish class to take her final. How were we going to get Laura and her power chair picked up from campus and get her back home? I spent one frantic moment in a dazed and confused state, then sprung into action, knowing her class was going to end shortly, I began calling some local cab companies in hopes that they would have a vehicle to get her home. A anxious search lead me no where. Finally I called our county transportation office hoping they might have a list of companies that had a vehicle that could get Laura home. I got the answer I needed! A cab company had just obtained 3 accessible vans but they usually booked them days in advance. That feeling of relief suddenly became even more filled with angst then originally. I explained to the dispatcher, Sheeana, that there was no other way to get my daughter home. Low and behold Sheeana showed her compassion for others. She asked for my cell number and told me that she was going to try something. What she tried was Miss Keisha, an amazing woman who felt compelled to help. She was off duty and had taken home the company van. Sheeana, thinking quickly, remembered Keisha so she made a call and within 20 minutes this caring incredible woman arrived. She first picked me up so I could help locate Laura who was waiting for us at school. Miss Keisha was an expert; she pulled out the tie downs and seat belts necessary for Laura's safety and in a quick 2 minutes had the company's van ready for Laura's ride home. She was not on duty, you could tell by her attire, pretty dress and very high heels, but that did not stop her from helping when she got the call.

On the trip home we found out that the company was instituting a special program for riders needing to feel independent enough to go to recreational places on their own. We filled out an application for Laura, which is now in process and took information to spread through the disability community here. What was a horrible moment had suddenly become one of excitement to share new support for the people in out community, as well as giving Laura the opportunity to have a new freedom for getting around!

Meanwhile, I left my husband with the van and not much else. No cell phone and a mechanic on the way that we did not even know! No joke...6 hours and $300.00 later, he drove the van home, the problem had been a small computer that does something or other to keep the van running!

We decided that we needed to step up our search for a second vehicle to "back up" Bessy. So today, after another search or 10 on Craig's list, we brought home Harry. Harry became a part of our life due to the tax return funds we were saving for just this thing! Harry is a 2002 Buick Rendezvous. He runs well, at least it seems that way! The chances of both of Bessy and Harry going down at the same time is hopefully not very good. Harry has a hitch and a wheelchair lift that goes in the back of the car so we have the ability, with a bit more difficulty, to be able to transport Laura's chair along with Laura.

I am telling this story because it is a fact of life, the needs that we face as caregivers and people with disabilities is different and more challenging and often frustrating. Although when a Miss Keisha or Miss Sheeana or the owner of the small bookstore who saw us struggling with Bessy in the heat (we live in Florida) and came out with cold water and the invitation to use his store's bathroom and a/c or the bear of a man who pushed the van out of the street...when people like these walk into your life, the moment and the struggle becomes just a little bit less frustrating and upsetting, it shows that Life has it's amazingly good moments...