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...

Mother's Day Connection

[caption id="attachment_7270" align="alignright" width="300"] My first Mother's Day- 2006[/caption]This past weekend I celebrated my 9th Mother's Day. There is nothing I wanted more in this world than to be a mother and there is nothing I cherish more than my daughter, but Mother's Day can be a tad bitter sweet.

I have learned how to process all of my feelings like jealousy, anger and sadness when it comes to the life I expected. It took many years, but with lots of help and support I was able to come to peace with my "new normal". I still think about the things my family can't do, the things we miss out on, especially the things my daughter will never get to experience. I have learned to be happy for my friends and family that are living the lives I planned. I have learned to focus on what we DO have and what we CAN do and to celebrate EVERYTHING!

Holidays are still tough, and I think they always will be. The traditions, the pageantry, all of it is just another reminder that I'm not like my friends and family, at least not the ones I have known all my life. I am however, just like my new(ish) friends and family. I share a bond with my new community that makes us feel like we are family- sisters by circumstance.

[caption id="attachment_7279" align="alignleft" width="250"] "Snuggle Cam" Mother's Day 2015[/caption]This community, my new family, it's you- all of you! I logged on to facebook on Sunday, as I do everyday, and I started to feel a little sad as I scrolled through my newsfeed. I saw so many post of my friends with their kids out doing special things for Mother's Day. I read each post and felt happy that they were having special days, but also a little sad. However, as I continued to scroll through my feed I saw other posts that made me feel connected to the rest of the world. A connection we all long for- a way to feel like we ARE normal. Some of you, my MOM friends, were posting pics of your miracles snuggled up on your laps, tubes connected, sitting in awkward positions in order to support their needs and your faces filled with so much love. You all were doing exactly what I was doing. Snuggles with my daughter are my favorite part of the day. On some days we snuggle almost the entire time. For Mother's Day she was in a good mood and we snuggled on the couch watching chick flix and having our girl talk (she is non-verbal, but we still have our chats). It was a great day, I too was filled with so much love and I was happy. I don't know why I let the pictures of moms playing in the park with their kids make me feel like my Mother's Day was any less special. Truth be told, I think mine was MORE special. I thank all of you for reminding me of that.

I hope that all of you had a wonderful Mother's Day, and that you all got some snuggle time with your miracles.

Would I change a thing??

Some recent events that I have read or heard about got me really thinking.. If I knew what I knew now and had a choice to live with what is my now normal with my special needs child or choose to not have them at all.. Would I change a thing?? Would you??

If someone sat you down with a television in front of you and first you were able to see your life as it is now.. life with your special needs child. All the appointments, all the worry, all the unknown. Every tear, every angry at the world moment in tears and fear, angry at how unfair this is for your child and your family. Every hurt, knowing how hard it is for your child to do things that come so easily and taken for granted by others. Every stare, every rude comment, every pity look.. Every missed dinner, night out time with friends because you couldn’t leave your child or wouldn’t. Every missed moment with your spouse or missed vacations because your special needs child needed you. Financial burdens because of medications, equipment, gas to get to and from numerous appointments and therapies. Every set back. Every moment your other children miss out on with you because your special needs kiddo needs more attention and help. Constantly comparing, noticing the differences between your child and others their age and bursting into tears at any given moment because it doesn’t seem fair. But also, every cuddle, every kiss and hug. Every over the top celebration for the little things that are BIG things. Every smile. Oh that precious smile. Every sweet little moment of quiet when you watch your sleeping angel knowing they are the biggest blessing. Seeing the hearts of those you love soften and change for the better because of your child. Seeing your son or daughter with special needs LIGHT UP when they see their siblings, when they see you. Those moments when your other children sit down and cuddle with or hug or sing to or play with your special needs kiddo, seeing the love they have for them. Seeing that compassion your children have that many don’t get the opportunity to learn. Every therapist, doctor, teacher, receptionist, fellow special needs parents that you have met during this journey. Everyone of them that have talked with you, sat quiet and let you vent. Every tear shared with them and new friendships you made with them. Every moment you felt the love and support of life long friends and the care and compassion you see in them walking this journey with you, no matter how near or far they are. Every moment you spent with your spouse crying, holding each other, reassuring each other everything will be ok, and feeling that much closer to each other because of it. A bond no one can break.

The next thing you view on that screen is your life had you chose not to have had your special needs child. You see your spouse and your other children. Life is easy, well easier. Money isn’t as much of a struggle. You have a savings. You take vacations, go out to dinner. You are able to make more nights out with your friends and spouse. But life gets busy still. Soccer games, school functions. Life is “normal”..

What would you choose… a Life that is “ Normal”, or a life that is with a tougher journey?? I know some may say if they could choose they think it would be better for everyone to choose the normal. Their child wouldn’t have to grow up struggling, fighting, being hurt, treated unfair and as a parent you wouldn’t have to deal with so much hurt, sadness, anger, exhaustion.

But for me, I would choose all over again for the life I have now. I don’t believe I should have the choice, its not my choice its God’s and I believe my daughter was designed and made special for our family, to CHANGE us.. but if I had a choice I would choose our normal, our life with our special needs daughter. My daughter is a BLESSING!.. yes it makes me sad she has to struggle and work so hard to do little things. Yes it makes me angry that others put limits on her or have pity for her and for my family. Yes I am exhausted ALL THE TIME! Yes I miss out on so many get togethers with my friends and it tears me apart.. I miss them so much and hope they know I love them and want to be there. Yes money is tight. Yes my boys deserve so much more of my time and attention..BUT I am so thankful for every moment.. Every exhausting night. I am so thankful for every moment that has brought tears but also brought my husband and I closer together and made us stronger, oh so much stronger. As a couple and as individuals.. I wouldn’t trade a single smile from my baby girls face. I enjoy those moments I get to celebrate with my daughter and family and friends for little things my girl accomplishes. I enjoy sharing about my daughter and my boys with my family and friends and hearing all the amazing things their kiddos are doing.. I Love being able to share a little about my daughter with others, even strangers when they ask and then learning about someone “special” in their life.. I wouldn’t trade a single second.. Every moment with each of my children is a blessing.. I wouldn’t change it. I believe God allows some children to be born special to allow others to learn compassion, care, love and a deeper understanding of how much God loves us. My daughter I know is so much stronger and determined and loving then anyone I know because of her journey and struggles. My boys have developed a deeper love for their sister because of their journey with her. My husband and I are closer and more in love then we have ever been. This life is a journey we would choose over and over again.. Yes we wish sometimes things were easier for her.. she deserves that. We want her to be able to do things like walk and talk and sing.. but its not up to us or in our timing.. God has a plan.. I would keep every bad day, every good day.. every moment just to see that little smile and be given one of her slobbery wet kisses

What would you choose?

This post was written by guest blogger, Leanne Dillingham.

Leanne is MOM to Alyssa. Alyssa was due Jan of 2011. After issues with preterm labor and a very scary
emergency C-section, Alyssa was born on November 18th 2010, 33 weeks pregnant. Alyssa spent her first month in the NICU and had multiple issues there. When she was finally able to come home a couple weeks before Christmas, we thought the hard part was over. As time went on we noticed different things with Alyssa. She was progressing with development but very slowly. She didn't crawl till well after 2. She had genetic testing done and we found out that she has a genetic mutation that they don't have anyone else on file that has it yet. She is developmentally delayed and has microcephaly. She has seen many different doctors and therapists, and keeps us very busy. She is 4 now and she doesn't walk or really talk yet but we have faith one day she will. We are a family of faith and believe that God blessed us with this little miracle and she has taught us so much. She is such a blessing to our family and we are so thankful to be on this journey with her. She adores her big brothers and they adore her.. Life is good. Not always easy but good.

How Much can We Take?

I laid in bed wondering last night, how much one person, one human being can honestly take.  It was not supposed to be a pity party, it did not even start as a self-directed thought really, just one passing thought amongst many others I got stuck on for too long.  My mind quickly became a swirling wind that took me many places within an immeasurable amount of time.

I thought about my daughter and how many hospitalizations she has had since she was two.  I thought about the abilities she has lost, and gained, only to lose again.  I thought about the countless interventions she goes through and how at the ripe age of eight she already knows how to take care of; central lines, urinary catheters, feeding tubes, oxygen, vital sign monitors, medical syringes, and prepare blood vials for lab draws, but she shouldn’t have to.  I thought about her pain, both physical and emotional as she has experienced true “10’s” on the pain scale as well as pain that cannot be measured as her friend’s left her behind in this world after years of suffering from the same disease that she has.  How much can she possibly take?

I thought about my son who shares her genes as well, the ones that most likely caused their mitochondrial disease.  I thought about the fact that he was born having to know how to fight.  I thought about the fact that he never truly knew a moment’s peace as he experienced tachycardia even in the womb.  I thought about how being uncomfortable is the only thing he has ever known.  I thought about his first weeks and days being poked and prodded by doctors who needed to figure out why he was spitting up blood and breathing like a premature baby even though he was born on time.  I thought about the oxygen tubes and wires that he had to learn to navigate as he tried to master all of his milestones and the fact that even though he had to work extra hard to meet them, one bad illness swept them away again.  I thought about the burning fury my heart felt for my little boy then.  I thought about the fact that without a single medication our son cannot regulate his own body temperature, blood pressure, heart rate, breathing rate, or sweat response correctly, and that one pharmaceutical error could land him in the hospital.   I thought about his little lungs that never really did develop correctly and how they can cause him physical pain when he breathes from time to time.  I thought about the fact that just last week he told me his legs are always tired and have “boo boo’s,” he is only four, there is nothing right about that.  How much can he possibly take?

I thought about their siblings and what they have been through, the ups and downs of having a brother and sister who have been sick as long as they can remember.   I thought about the years in which they were constantly being handed from one friend or family member to another so that we could be in the hospital.  I thought about the events we missed.  I thought about the birthdays I had to leave in a hurry as one of their siblings crashed, or the hospital finally found a bed for them when they were ill.  I thought of the vacations that we promised the kids that ended in travesty as their siblings needed to be admitted, as it turns out you cannot take a vacation from chronic disease.  I thought about their faces as I have had to continuously tell them “one more minute I promise,” as I am securing their sister’s G-tube, drawing up meds, or repositioning their brother’s pulse oximetry probe.  I thought about the train of strangers that have been introduced to their lives as; nurse after nurse, social worker, palliative team, medical suppliers, Church members, babysitters, etc have come into our home because of their sibling’s needs.  I have thought about the sheer terror they have had as the ambulance has come for one of their siblings as they have cried “please don’t let them die,” having seen their siblings; seize, turn blue, scream out in pain, be unresponsive, and other things no child should ever have to see.  I have thought about how mature they have been and how they, like us, have held their heads high and continued to put one foot forward, but how much can they possibly take?

I thought about my husband.  I thought about the hours he puts in at work, working for both himself and the hours I can’t contribute needing to man the homefront 24/7 .  I thought about the fact that none of this was within the plans we made and yet here it is.  I thought about the fact that this is probably so much more than he bargained for; two children with a progressive disease, a wife with her own chronic illness, living nowhere near extended family so we could make a living, having the weight of the world on his shoulders.  I thought about the vows we made and how after almost 10 years he still is in it, for better or worse, richer or poor, sickness and in health.  Boy, did we nail all of those.  I thought about how proud I am of the man he is and the love he has provided for us, but I fear some days how much he can possibly take.

I thought about my village.  I thought about the many times I have had to rely on them and the many times they have been there.  I thought about the many times we have had to ask for help, and the many times we have received help without asking.  I thought about; the meals, the donations, the time spent from others, the prayers, the listening ears, and the rallying of the forces.  I thought about how when a trauma is short lived many people can rally in and rally strong, but defenses usually fall quickly only being able to take so much, it is only human nature.  I thought about the fact that our trauma is never going to go away, so how much can they possibly take?

My racing thoughts eventually ended in slumber, although I will admit, it was not exactly a restful night sleep.  I woke this morning to begin my usual routine, step by step, just as the day before.  Unusually I had a little time before my alarm so I reached for the prayer book my father had brought me that belonged to his parents long ago.  I thumbed through it’s pages searching for nothing more than just the pleasure and comfort of knowing I was touching something that they once held.

The ribbon page marker was separating pages fifty and fifty-one, the titles reading Don’t Worry and One Little Secret of a Happy Life.  “Sure,” I thought, “If only it was that easy.”  Clearly the Priest who wrote this devotional back in 1908 had no idea what would be in store for our family, and families like ours, the burdens we would carry.  Then I caught myself reading instead of allowing myself to continue the internal dialogue that could easily have erupted into the full blown self pity that brings hot and angry tears.



"We can not fight this battle continually for half a century.  But really there are no long stretches.  Life does not come to us all at one time; it comes only a day at a time… It is a blessed secret this, of living by the day.  Anyone can carry his burden, however heavy, till nightfall.  Anyone can live sweetly, patiently, lovingly, purely, until the sun goes down.  And this is all life ever means to us ­­­­– just one little day." (Lasance, Rev. F. E. 1908)

And there it was, in plain black and white text, the answer to my circular question from the night before.  All any of us can take is what we are given in a day, in that moment.  Not a being on this Earth was meant to live more than just a day at a time, to breathe more than just the air that is within our lungs upon each breath.  The pages we have already turned are the very answer to the question, “how much can we take.”  We can only take what we are given today.  So, we will all continue to step forward with our heavy loads, placing them on the bedside table each night, turning our burdens over to God, knowing that tomorrow’s little day is yet to come, and today is said and gone.

Now that is something I have faith we all can do.
-Lasance, Rev. F. E., My Prayer Book, Benzingers Brother Inc, 1908

The Dreaded IEP

I am a mom of a 35, 29 and 27 year old, all having IEP's from the day they began school. First in NY and then in Florida, I learned a lot about how the system works, or does not work. In total, I figured that I sat at the table at 34 IEP's and Transition Plan meetings, not counting the repeats, retries and reviews, to which I was invited so I could sign the changes!

I was lucky, in a way, because I didn't have friends, families or other acquaintances advising me that IEP's were created to drive parents crazy, or the friends that would say "just grin and bear it, your kid will get what they see fit anyway"...I was able to figure it out for myself, which was a good thing.



My first IEP was for my oldest adopted daughter. She came to live with us, already registered in the second grade. She was a challenged 8 year old. The time we spent at her meeting was pretty productive: an educational psych was ordered, her classroom assignment was predetermined by her last school placement and any special accommodations that might be necessary were placed on a back burner to be based on the psych evaluation. What I didn't know was that it would take 8 months to get an eval completed! We limped along with her education, trying different ways for her to learn (Thank you Mrs. Roberts for being so inventive!) I began to see a connection between her ability to learn and music. It did not matter how bad the music sounded, as long as it was music. I began singing the times tables around the house and making songs up about colors and numbers. She learned, not as much as I had hoped, but more than before.

So the following school year, eval done and all the bits and pieces of Mrs. Roberts and my experiments in ways for her to learn in hand, we sat down at the IEP table. Now, I had a healthy understanding of the IEP's focus and how the procedure went. There were teachers, therapists, a psychologist, an administrator and some others who just had to be there because they were supposed to be. We all shook hands and introduced ourselves. I might have been a bit nervous about what was about to happen next but, I did listen, and waited. I got a different prospective and realization about these professionals. In many cases, it was the rules and regulations and the laws that kept them from assisting. I was able to find some ground centered around my daughter's ability to learn better through music. I thought for a moment and then decided to just say it, no matter how absurd these professionals would think it to be. I took a breath and spoke, "I teach my daughter by making up songs that help her!" Some of the professionals were nodding at what I was saying and one, even smiled. She explained to me that the learning part of the brain is in a different part the part that hears, understands and enjoys music. "Wow", I thought, I wasn't such a nutcase after all! That moment brought with it a whole change of thought and prospective for this and future meetings, we thought of different way to use music in her learning and set up accommodations to work in that capacity.



The tone was set, from that time on, through Middle and Senior High School our IEPs and Transition planning went well. There were times when we had differences of opinions, and sometimes that was a good thing. What I found most important about the process is that most of our teachers care about the kids they are teaching, but they have restrictions and have to be compliant to do their jobs. I am really sure that many of them get frustrated and angry about how their hands are tied by the very system that is supposed to do it's best for every child. If there is respect between the parent and the school, if you don't walk into one of these meetings with a chip on your shoulder but instead you do have your facts and ideas ready for them, the meeting will go reasonable well and you will have given them a reason to respect you for your care and concern for your child and for them.

There are some times when there is no answer and other avenues and ideas need to be explored. When those times come around, I found that getting assistance from online sources is very helpful. I use The Central Florida Parents Center at times. (Although this is a Florida based organization, the information you can find on the site is of good value in many situations). I have also looked for information on ECAC.

If you can go into these meetings with a list of necessities and a wish list, offering it to the professionals in a respectful way, I believe they will do all that they can to do as much as they possibly can within the rules and regulations that they have to follow.

My girls are out of school now, although one is still in college and does take advantage of the accommodations offered by the Disability Department at her school, it is very clear to me that the IEP experience need not be one that can bring anxiety and upset with it.

Another one

It's funny, I never wanted kids.  I was never one of those people who grew up and couldn't wait to be a mom, who knew that was their calling or destiny.  I actually never even considered having children until I met my husband, and gradually my thought pattern began to change.  The idea started to grow on me.  Once we made the decision to have children, I knew I wanted at least two.  I never wanted to have an only child, I always wanted them to have a sibling like my husband and I both did growing up.  But when my daughter was born, the game plan went out the window.

 

I just turned 34 and feel like I'm staring down the barrel of a gun that is the ticking clock of motherhood and child bearing years.  Every day, every hour, I think about another child.  It is on my mind constantly.  I feel such a strong desire to have another.  But I'm terrified.  After an incredibly complicated first pregnancy that resulted in a 2lb 27week preemie, I am already considered high risk.  I have some serious health problems that require medication I can't go off of, so I am high risk.  Each year, each month, each week that goes by only adds to that risk.  I feel an intense desire and yearning to have another child, and I feel like I have to do it sooner rather than later, but the fear is crippling and suffocating me.

 

What if I have another preemie?  Am I strong enough to go through another 3 months in the NICU?  Monitors?  Oxygen?  NG & G-tubes?  Surgeries?  Therapies?  Specialists?  Second opinions?  Early Intervention and IEPs?  What if I have another child with special needs?  Can I handle that?  Can my marriage handle that?  I have my own unique special needs.  When I have a bad day, is it fair to ask my husband to handle two special needs children?  Will it break us apart?  Will it make us stronger?  If I have another child with special needs, will it cement that guilt that I feel and will it ensure that all along, it was all my fault?  If I have a second baby with medical issues, will it make me feel broken?  Will it break me?

 

What about my daughter?  Is it fair to Elizabeth to give her any less than 100% of my time, love, energy, and devotion?  Will we see regression with a new baby in the house?  She's come so far and I don't want to see her go backwards.  With all I've been through with Elizabeth, I cannot fathom loving another human the way I love her.  What if I don't love the new baby the same because I haven't gone through the same experiences?  When you have a medically fragile child, when you watch her stop breathing in front of your eyes and be resuscitated, when you fight tooth and nail for better care and better doctors, when you treasure each moment because you don't know what the next one may hold, an incredibly unique unbreakable bond forms between mother and child.  Protector.  Fighter.  Advocate.  MOM.  What if I don't develop that same close bond, that same unique love for the new baby?  What if I don't feel the same way towards it that I feel towards Elizabeth?

 

And ironically, what if the new baby is normal?  I don't know what to do with a normal baby.  Will I expect different things of it than I do of Elizabeth?  Will I come to terms and accept that Elizabeth's issues were one in a million?  Will I know how to care for a baby that doesn't turn blue or have an apnea monitor?  Will I know how to care for an infant that has no special needs?  There will be no specialists, no insurance battles, no extra needs.  Can I adjust to that?  I don't know how to do that.

 

And .... what if we don't have another baby?  Will I always wonder what if?  Will I always wish I had?  I never wanted just one child.  But in the one child I have, I am truly blessed with a wickedly sassy, intelligent, charismatic, funny, charming little girl who has come so, so far in her 3+ years on this earth.  She is my world, she is my everything.

 

So as my clock ticks down the years and months and weeks I have left, I am utterly torn as to what to do.  My husband and I go back and forth every day, our opinions changing as often as the tides.  Introspection leads me to one conclusion, again and again - am I trying to have another baby to prove that Elizabeth's special needs are not my fault, to rid myself of this guilt I hold so close and dear?  Am I trying to prove that I am physically able to have a healthy child?   And if that's the case, I shouldn't have another.

 



But when I see Elizabeth, I no longer see my baby, my little one.  I see a child, a little person.  She is growing up so quickly.  I yearn for those quiet moments of holding a baby, those moments we never got with her because they were complicated by medical equipment or refluxing or destatting.  On my computer at work I have a picture of her at 6 months old - the first picture of her with no oxygen, no tubes, no wires.  Just Elizabeth.  I love that picture.  Three years later I love the child she has become.

 

I think I just long for those moments again when she was just a baby.  Or maybe I long for the moments with the baby I never had.  And I yearn for another child to fill the void I now feel in my life.  I wanted to have two children.  But I am terrified to even consider it, there are so many what ifs.  Some part of me feels deep down that special needs or not, I want another child.  But for now I just live each day with a thousand questions and possibilities flying through my mind.  Maybe sometime soon we'll make a decision.  Maybe we'll be brave and decide to venture on this uncharted journey once again, and see what it brings us the second time around.

 

 

Here's a shout out for Diversity!

For many years now, I have been involved with volunteer opportunities regarding Disability Advocacy. I have served on Boards, Councils and with support groups. I have seen how slowly the wheels of progress and understanding move but I have been able to SEE those wheels move towards a better awareness and understand of the needs, hopes and dreams of people who live their daily lives with challenges.

About 2 years ago, I received a notice through one of the information agencies that keeps me and many other volunteers posted about things happening in the community. The notice was about the formation of The Diversity Advisory Council for the county in which I live. They were asking for volunteers who were willing to represent their different diversities, ranging from ethnic cultural, to children at risk and, those who could represent the disability community. In order to qualify, we were asked to write a short essay on the who, whys, what and wheres of our belief that we should be part of this new experiment in working towards community togetherness. Although I could have chosen my diversity to be that of being a woman, or a Jewish lady or one of the fast becoming elderly, I chose to continue what has become second nature to me, that is to represent the disabled community.

About 6 months went by until I received a letter from the Board of County Commissioners asking me to accept an appointment to the Diversity Advisory Council. I was surprised pleasantly, I thought it would be a great adventure to work with people representing so many different cultures, issues and ideas. On January 5, 2014, I attended my first DAC meeting. It has been an awesome learning experience from understanding how government on the county level works, to learning very quickly that the DAC has much to do and many ideas to incorporate into something that has the ability to provide a space where the community can come and be together, not to have the community absorb the differences but to be able to celebrate them and work together to help us "bridge the gaps" so that we can truly become a community made up of differences that finish the puzzle with everyone needing each other to complete a beautiful image.

For the first 6 months, we worked to create a Strategic Plan, which gave us the framework by which we would work, It was a struggle just due to all the unique issues facing each of the diversities we represent. We spent long evenings "hashing out" the language we needed to provide and the understanding of what we planned to do and how we planned to do it. We developed a mission for the DAC, a budget for the expenses and the formation of 3 specific sub-committees which has become the "machine" that puts it all into action.

As a result, in a few months we will have our first Community Organizations Summit with the purpose being to introduce ourselves to the organizations who work day to day with diversities, find out their needs and ideas so that we can compile the statistics and report back to the Board of County Commissioners along with the DAC's recommendations of how best to provide a better way for all people in the county to work together. Among the groups and organizations to be invited will be a large contingent from the disability community. It is exciting to know that those of us who have seen little goals reached will have the opportunity to now see an even larger potential to provide awareness, as well as, a greater opportunity to become part of the community instead of being on the fringe. I am excited and hopeful about the DAC's vision for the future. The dream is that the DAC will become an integral part of city, county and state governments throughout the country.

The DAC is hard work yet remarkably rewarding as well, it provides hope that we all can grow strong by the contributions we each offer in making our community one that works together for a better present and greater future.

Throughout the country, although not part of government, there is an organization called the National Diversity Council, many state have Diversity Advisory Councils for the purpose of advising and carrying out the mission of the NDC. The more present the disability community can be in these councils, the more our voices will be heard and the needs of our loved ones will be met, please encourage your town and county government to think about the formation of DACs, it is amazing how much can be done when we all work together.

[caption id="attachment_7170" align="alignnone" width="500"] Well known Christian singer, Jessica Bittner and Her two adopted children and a new friend who joined them from the audience to sing. Since then, they have 3 more children added to their little slice of diversity. They are so wonderful to see.[/caption]

Learning to Embrace Homeschooling our Special Needs Child and Why it Wasn't Easy

Our daughter started off her kindergarten year just like every other eager five year old.  She counted down the days until she could get her oh so grown self onto the bus, make new friends, meet her very first teacher, learn to read, and gain that little bit of fly-from-the-nest independence that many children desperately urn for by their fifth birthday.  Sadly, due to her declining health, she could not have all her heart's desires, not in the way most children her age could at least.

We tried our best to make it work.  Though it was not the picture she had imagined from witnessing so many before her enjoy the simple pleasures of attending elementary school, we did all we could to assure that she was able to have as many of the same experiences as possible.  There were still some unavoidable differences; she got dropped off and picked up each morning/afternoon curbside so that we could carefully unload her wheelchair to be sure she had the energy to make it through the day, we had to hire a private nurse to attend with her so that she could manage her vast medical equipment and health care needs, her backpack contained more medical supplies than books, and countless other subtle to large differences that set her apart from the typical kindergartener.  Even with a special plan in place to help our daughter succeed educationally despite the effects of her mitochondrial disease, our local elementary school only had the pleasure of knowing our daughter for two months before those options were no longer enough to maintain proper education in a safe environment for her.   She was absent, more than she was present due to frequent hospitalizations and illnesses.  She simply became too sick to attend school.

At that point it was clear the only choice for her was to be homeschooled, so that is the choice we had to make...

I would be lying if I said it was an easy choice to make.  The road to acceptance was long and difficult with many bumps along the way.  Homeschooling our daughter was not something that had ever crossed our radar as parents.  Not only had my husband and I both gone through the public school system to achieve our educations, my husband also spent years obtaining a postgraduate degree so that he could teach within the public schools.  It was very far outside the boundaries of our comfort zone, and something that we just had never chosen to put much thought into.  We had no problem with the concept of homeschooling itself or others who had chosen it as their children's educational path, it was just not something we expected, and because it was not something our daughter initially understood or wanted for herself it made it all the harder to embrace. The inability to help her succeed in public school, and what at first felt like a forced decision to homeschool honestly just felt like one more thing that her disease had taken from her, when in reality we were looking at it from all the wrong angles.

There were many days in the beginning that I felt as though I was failing her.  As she would sleep the days away unable to be alert and present for lessons I neglected to see how we could benefit her any more than her previous educational arrangements.   Though I knew that it was her body that was failing to support her and not me, I often lacked the courage to assure myself I was good enough to make it work.  I eventually realized that was my main fear when it came to the decision of homeschooling all along; feeling solely responsible for the possible downfall or success of our daughter's education.  We would no longer be the supportive educational role, but the single players in such an important part of our daughter's life, and while that control might be some family's reason for choosing to homeschool, that created an intense fear in me that kept me from being able to fully embrace it.

Our little girl is now in third grade.  The decision we made, with the gentle guidance of our daughter's physicians, to teach her at home was one of the hardest we have had to make for her.  What has made it easier over the years is seeing all of the; educational, physical, and emotional benefits unfold for her as a result of it. She has made academic progress we were unable to attain while she was simply too exhausted in a classroom setting with teachers who were unable to give her that one on one attention she needed to learn. We have the ability at home to work around her, which is nearly impossible in a public school setting.  She sleeps when she needs to, and we school when and where she is able.  If that means we are doing lessons on the Ipad from inside her hospital bed, then that is where we do them.  Although we cherish the days where we can break out into the fresh air or get down and dirty with hands on activities we know those are blessings that we can not take for granted.  We never know what the days will be like for her.  While I had no original desires to become a teacher, I had to, for her.  It has been both an exhausting and very rewarding journey to say the least.

I will admit there are days when I still grieve over what feels, at times, like the loss of a dream. The ebbs and flows of emotion are like waves upon the shore; sometimes silent and gentle, other times roaring loudly and knocking me clear off of my feet.  It often comes on strongest when she is too sick to homeschool. She will sleep the day away curled up in a ball; her curriculum opened and ready, untouched on my desktop, with lingering hope that we will be able to complete another necessary day of learning.  There are days where I find myself reading chapter books out loud from the foot of her bed, stroking her delicate skin, hoping that maybe, just maybe she can hear my words and process even the smallest bit from her much needed sleep. Sometimes I question if I am really doing that for her, or for my own reassurance that we are doing all we can.

Today as I sat there again at the foot of her bed,  reading chapters to her softly drawn eyelids I paused a moment just to take her in.  Before I could even begin to start questioning myself, or our choices I gave her hand a gentle squeeze.  I know we are doing the best we can, and I know we are doing right by her.  The little girl who struggled to recognize the letters in her own name, can now read, she can write, and though she had the unfortunate circumstance of inheriting her grandmother's math phobia, I know we will get through that together too.  When you look at where we came from and where we are now I know we are already responsible for her success, together.

Adapted from "Embracing our Path to Homeschooling," originally published on Learning to Let Go; A Different Dream for Us

Obtaining a Second Opinion

Sometimes in the course of life, whether for special needs or not, we need to obtain a second opinion. Whether for ourselves or our children, it can be hard to know where to start. I took Jaxson to Dallas at the beginning of January, and it took months of research and planning. I wanted to pass on some knowledge I learned during that process and hand out some tips for those that need to travel out of state. For the purposes of this post, everything will be related to your child.

The first thing you need to ask yourself is what you want a second opinion for. Does your child have a diagnosis that you question? Is there a doctor recommending surgery and you're looking for other options? Have you heard of a fantastic doctor who specializes in kids like yours? There are a number of reasons to seek a second opinion, so be sure you know what you want to answer before you start. For us it was easy; we just had to wait on Jax to stop having surgery so I could make plans. Since Jaxson had multiple skull surgeries in his first two years, we knew we needed a craniofacial specialist.

Once you know what you need, do research (if you haven't already) on what typical treatments for this diagnosis will be. You can look up non-profits that fund research, organizations designed to support, and use the National Institute of Health website to gather the information.

Next you can start looking up doctors and hospitals that specialize in your area of need. If you aren't on any Facebook groups that link to what you need, start there. Facebook is not just a great way to network and find people who understand you in situations where others don't, but it's a great place to learn. When you are in a specialized group, you can find support and give support equally, and others are happy to share their experiences with various doctors and hospitals. Once you get a few names, do your research. Google every doctor and hospital and see the reviews, check out recent articles in medical journals, ask other parents you know who are in a similar situation and may have heard the names. You'll want to make sure that the doctor you seek is associated with a known board and that the hospital is ranked well among its peers.

When you have the search narrowed down to the doctors of your liking, it's time to contact your insurance company. Start the process of seeing if your insurance will cover a second opinion, especially if it is out of state. Because Jaxson is on Medicaid, nothing out of state is covered, which I was happy to know well in advance. If you find out that your insurance won't cover part or any of a second opinion appointment, go back to those non-profits and organizations you looked up before. I was able to obtain assistance with a hotel and airfare through the Children's Craniofacial Association, and I know they would have helped with other expenses had we needed it. They required a simple application and a few documents to support our need and that was it. They were very easy to work with, and I like to think that other places that offer such things operate in a similar fashion.

While you're working with your insurance company, go ahead and contact the doctors you have selected and find out what they require to obtain a second opinion. Every doctor requires records, of course, so make sure you have copies.

Electronic copies can sometimes be accepted, so you'll need to create a zip file or use Google Drive in order to send them. I was lucky enough to find a doctor who was willing to email with me initially, and after many back and forths, I was able to determine that we needed to go see him. Most doctors will not do this, and I admit that I was very fortunate in this instance, but I found it by doing a Google search on a name given to me by a friend on Facebook. Turns out that we went to see this doctor, and I also admit that his office staff is second to none, including the staff we see on a regular basis, whom I absolutely love. That's something that I put a lot of stock in when looking for a doctor, if you don't have a happy staff then something is wrong! And these ladies aren't just happy, they are efficient and they follow through. Also very important in my opinion.

After you have gone through this process, you've weighed the pros and cons and you've determined that you want to go through with the appointment. The hard part is done, the next step is to actually make the appointment. Make sure you set it out far enough that your finances won't be strained. You want as much time to plan and save as possible! Once the appointment is made, you can begin your flight and hotel search.

My New Normal

The first 2 years after the birth of my daughter were extremely dark for me. I had moments of joy, but most of the time I was hurt, angry and jealous. I would see a mom and daughter in the store shopping together and start to cry because I could not take my daughter to the store with me. I would hear a mom complaining that her child is not walking yet and he/she is already 14 months. I would be filled with anger at this mom, how could she complain when my child will likely never walk. I would be hurt when my friends and family would leave me out of things since they knew I could not leave my daughter's side. Rather than letting me decline an invitation, no invitation was offered. I would hurt for my daughter. I wanted to give her the full life that I had spent 9 months imagining while I was pregnant. I would give up my ability to walk, talk, eat, breath if I could give it to her instead. She was so innocent and so pure, and yet she was being punished for no reason. I was angry at doctors, at God, at myself, I was angry and hurt all the time.

Around her second birthday we moved back to my hometown where I had family and more friends that I could lean on. We also finally got a regular scheduled nurse to start helping out. Eventually I was able to get out and do things for me. The darkness was starting to lift as I found bits of my old self shining through. Anytime I would tell my daughter's story (our story) it was as if I was living it all over again. I could hear the monitors in the NICU beeping, I could smell the alcohol wipes prepping for blood draws, I could taste the watered down fruit juice that I drank to try to produce more milk for pumping, I could hear the suction machines, the breathing of the ventilators, it was as if I were still sitting in the uncomfortable rocker next to her isolette in bay 8. I felt like I was going crazy. All of my friends and family wanted to hear the story, but I was not able to tell it without completely breaking down.

I somehow found my way to a local organization, Texas Parent to Parent. In my irrational state, I signed up to be a mentor to other moms. I was not qualified for this role, but I am so glad that I went to the training. As we went around the room each mom told her story and how they found their way to the group. I was one of the last to go. I sat and listened to each story and felt envious of each mom. I would give anything to have their problems. Their children were medically involved, but they could smile, they could breath, many could even walk and talk. Then it was my turn to share. As I had done a thousand times before, I tried to tell my story. I was a mess before I even got half way through. I could not hold back the tears and felt like a complete fool breaking down in front of everyone. I was here to be a mentor and as it turned out, I NEEDED a mentor.

At the Texas Parent to Parent training I learned about the Stages of Adaptation. I learned that my feelings of jealousy, anger, etc were all normal. I learned that what I needed to do was to grieve. Grieving did not make any sense at first. Why would I grieve, my child is alive? I realized with the help of these new mentors in my life that I am not grieving my living child, I need to grieve the life that I had imagined. The life I spent picturing for 9 months (or really for my entire childhood). The life I envisioned for my daughter, and for me as a mom, was very real. And that life is gone and needs to be grieved. My obsession with getting pregnant again, even though I knew I could not physically have another baby nor did I have the time, resources, etc for another baby, was normal. That was my subconscious way of trying to recreate the birth and early fantasies I had lost. Once I knew why I was feeling the way that I was, and I knew I was not crazy but just a MOM, it helped me a lot.

A year or so later I realized that there were reasons all of the memories were so vivid each time I told my story. I was suffering from PTSD. Just like the original idea of grief, PTSD also seemed completely out of place. PTSD was for soldiers in war, not for moms. As I learned more about PTSD I realized that it was in fact what I had. Many parents that go through a trauma like I had with their child (it does not have to be at birth- but often is) will be so scarred from that trauma that PTSD is very common. The same neuro receptors and chemicals are involved regardless of the nature of the trauma. I as a mom watching my child go through all that she as gone through, and going through many medical issues myself was traumatized. Much like a soldier that sees unimaginable sights at war, I saw unimaginable things in the NICU.

Many of us may need to see a psychologist or psychologist to help work through our feelings. Many of us may need chemical interventions to help get through this process as well (I do not mean to self medicate- I am referring to chemical interventions prescribed by and monitored by a licensed medical professional). There are some great resources to help find a good therapists in your area, and there are many that specialize in treating caregivers. Not only do they treat for PTSD, depression, anxiety, and the other things we often expect with extreme parenting, but they also treat things such as caregiver burnout, and grief at the many different stages. There is sometimes a stigma attached to seeing medical care for physiological issues, but if you need this care PLEASE call someone. There is no shame, and asking for help does not make you a bad parent.

Once I was able to work through my feelings and better understand what I was actually feeling I was able to get to a much better, much brighter place. I eventually even made it to the point where I can now be an effective mentor parent. I still have bad moments, days, weeks, but I am able to get through these dark places and back to the light much quicker now. It takes a lot of work and I rely heavily on my amazing support team (especially my husband). I have a new life now- a new normal. It's easy to get caught up in the things I wanted to do or can't do. When I start to go down this road sometimes I allow myself a little time to be sad, but ultimately I remind myself that each day with my daughter is a gift and regardless of what can't be done, there are SOOOO many things that CAN. We have learned to not sweat the little things; we have learned to live each day to the fullest; we have learned to celebrate EVERYTHING, and we have learned to ask for help. If you had asked me 10 years ago what I expected to be doing today I would never have guessed that this would be my life. Of course I would still trade everything if I could make my daughter healthy and to give her an easy life. That being said though, I am happy, I have found my joy and her name is Casey. Everything I do, I do for her.



I expect many of you reading this can relate to the feelings I describe. Please know that you are not alone. We are all in this together. Seek help, join support groups (like Mommies of Miracles) and allow yourself time to grieve. It's an amazing journey and rewarding in so many ways. There will be dark days, but you can do this!