A Letter to Bill Gates

Dear Son is fourteen years old now and has finally outgrown Barney. I say finally, because Barney has been his best friend since he was six years old. He received Barney as a gift from my brother, Mike, or Uncle Mike as he is known to Dear Son. I remember first hearing about the Acti-Mates Barney* and I actually nixed the idea because I didn’t think that Dear Son would like him. I couldn’t have been more wrong.

Dear Son fell in love with the big purple guy, as I affectionately call him, immediately. Barney was loved more than any child could love someone. He was as dog eared as he could be and I went through six AA batteries every two weeks for the big guy. Dear Son would roll around on the carpet with Barney and take his mouth and bite on Barney’s foot to activate him. When he did this, Barney would talk or sing. If he bit Barney’s hand, Barney would play a game. When he rolled over on Barney’s eyes, Barney would play peek-a-boo. More importantly, Barney could also be activated with Dear Son’s left foot. Barney went everywhere with Dear Son; I even had a Barney for the car, so I would never forget him. When Dear Son had eye surgery to straighten his one eye, Barney’s big purple fur wiped away his tears. He also accompanied Dear Son on every one of his forty three hospitalizations, and always made Dear Son feel better. At home, Dear Son had no siblings or playmates. But he always had Barney. Dear Son couldn’t love Barney any more than he did. I am always reminded of this when I take Dear Son to the ped neuro doc. There is a poster of the Velveteen Rabbit on the wall with a quote that says, “When you love someone long enough, they become real.” In Dear Son’s world, Barney was definitely real.

Toy shopping for Dear Son was always challenging. I had spent my early years with Dear Son at Lekotek, trying to find toys he would like. I also spent some time with him at the Rehabilitation Institute of Chicago while they tried to determine the reason for his lack of hand/arm function. At Christmas time, I would walk through Toys R Us weeks ahead of time searching for any toy that might work for Dear Son. Dear Son is severely retarded (due to a rare gene) and can’t walk or talk and has no use of his hands and arms. When you are severely physically and severely mentally disabled, that pretty much eliminates 90% of the toys in there. When he was younger, he could remain in a seated position but needed things with taller backs or straps to support him. Because of the lack of any suitable toys for him, Barney was flat out his favorite toy and best friend.

Now if you are a Mom or Dad, you know how important, “the” toy is to your children. You CAN NOT be without it. Not for a minute, not for an hour, not for a day or heavens, certainly not for a week! When Barney’s arms would split open from Dear Son biting on it and the wires would pop out, I would have to buy a new one. No problem. Until, “it” finally happened. Microsoft, who formerly made the Acti-Mates Barney that Dear Son loved, discontinued it in 2000. At the time, I heard rumors they sold it to Playskool, but I could not verify that information. The new Barney’s that Playskool did make however, did not function like the Acti-Mates Barney and therefore was no longer functional for kids like dear son. Instead, I had to resort to buying up other people’s Acti-Mates Barney’s on eBay.

So now, my problem is solved. Dear Son has finally outgrown Barney. I don’t need to do this any more. But, there are lots of kids out there like Dear Son who have no one to talk to because they can’t talk, no bikes to ride because they can’t sit up, no swings to swing because their parents can’t afford the $600 swings with the taller backs, no remote control cars because their hands don’t work, no video games for the same reason and the list goes on and on. Yes, I know there are other interactive toys on the market, but Dear Son didn’t like any of them, he only liked his Barney. So if “Dear Son” could write a letter to Bill Gates, it would be:

Dear Bill,

Please bring back the Acti-Mates Barney so other boys like me can have a real friend too.

Love,

Dear Son

*Note: In February, 1997, Microsoft introduced Barney, the first Acti-Mates product at $109.95. The Acti-Mates line was a series of seven character toys (Barney, Arthur, D.W., and the 4 Teletubbies) released by Microsoft. In 1997, the Acti-Mates Barney was a hot Christmas item; Microsoft quietly discontinued the toys in 2000. You can read more here at: http://tinyurl.com/orlsg

BIG CAT, Little Cat

Several years ago I purchased “little cat”. I had just sold my house and moved to an apartment and was looking for a pet for Dear Son. Since Dear Son is in a wheelchair, I knew that getting a dog was not an option since I would not be able to leave Dear Son unattended while taking the dog for a walk. I tried fish but Dear Son had zero interest. Someone at work suggested a cat for Dear Son however I quickly nixed the idea because I never really cared for cats. Upon further discussions, I decided to entertain the idea of getting a cat.

I purchased an ASPCA (American Society for the Prevention of Cruelty to Animals) Complete Book of Cats at Sam’s Club with all the cat breeds and began my search. If I were to be totally honest, I didn’t find any of them attractive. One of them caught my attention and that was the Munchkin. The Munchkin is basically a cat that has the dwarfism gene hence the extremely short legs. Munchkins are also much smaller than regular cats and typically weigh less than ten pounds.

I began to look in earnest for a “Munchkin”. Munchkin cats were supposed to be good with children, lap cats, very intelligent and vocal. They sounded purrfect for us! I searched all over the web for a breeder and finally found “our” cat. He was a beautiful black and white Munchkin with extremely short legs. I named him Wiggles. For the most part, I call him Wiggles but I’ll sometimes refer to him as “Little Cat” and on a few occasions as "Nasty Cat".

Little Cat is a very fun and loving cat. He takes particular delight in scaring away the ducks and birdies that come up to our bird feeder that sits on our patio. Specifically, he waits until they are all eating and then he takes a running leap and jumps up on the window, scaring the ducks and causing them to fly away. This for him, is fun. I typically reprimand him for this while Dear Son is delighted that Wiggs got “in trouble”. This behavior also warrants the “squirt” bottle which Little Cat really hates.

So today, Little Cat met his match. Outside the bedroom window was “Big Cat”. Big Cat looked to be a beautiful grey long haired cat with gold eyes; not as big as the 33 pound cat pictured above, but you get the idea. Kind of a tabby look about him really, but totally beautiful. Little Cat, upon seeing Big Cat wagged his tail and looked lovingly at his company. Big Cat however was not so sure. Fifteen minutes later though, Big Cat came around and decided he wanted to get to know Little Cat better. That’s when the trouble began.

At less than eight pounds, Little Cat is much smaller than Big Cat and appeared to be suffering from Short Man’s Syndrome today. Big Cat would peer in at Little Cat and Little Cat didn’t like being smaller than Big Cat so he jumped high up on the window sill to look out. Outside, the brick ledge was much narrower but that was not going to deter Big Cat. Big Cat soon began jumping up and crashing into the window to try to get closer to Little Cat. I thought the window was going to break. But Big Cat wouldn’t stop. He kept jumping up and lunging into the window to try to get to Little Cat. I was beginning to get a little worried. To stop this madness, I scooped Little Cat from the window and put him on the carpet over by the patio door. Big Cat soon began scratching the window and trying to get in. Not only did he scratch repeatedly at the window but he began to jump up against the window, scaring Little Cat. Little Cat screamed out, showed his big teeth and began hissing. I had never witnessed Little Cat being so traumatized so this was really something to watch. His black hair began to stand straight out on edge making Little Cat look like a full ten pound cat! This however, did nothing to deter Big Cat. Big Cat began bullying Little Cat some more taking his big long claws and scratching the patio door. The game went on for a while until I picked Little Cat up; he was shaking and his paws were ice cold. Finally, I decided to put Little Cat into the bathroom and closed the door until he went away. Finally, Big Cat left and life was back to normal.

Full Tilt

I was very excited all week. Friday would be the day that the wheelchair vendor would show us the new “tilt” wheelchair. The problem we had, was finding an “adult” tilt wheelchair that could be taken apart easily and transported in the trunk of my car, versus taking it in a wheelchair van which I neither had nor could afford. The wheelchair vendor had found a manufacturer that had a chair that met these requirements. The manufacturer offered to send the chair via Next Day Air to the school so we could see it.

Every day, I spoke to Dear Son on how exciting it would be. The plan, was that the vendor would come to Dear Son’s school and meet with his Dad and I, along with the physical and occupational therapist, to discuss Dear Son’s needs. He would show us three chairs. Of particular interest, was one of the wheelchairs, which could be taken apart easily and transported in the trunk of my car. Dear Son neither smiled nor shared my excitement for the new chair. I explained to him how great it would be that we could continue our walks this summer and it would be more comfortable for him. But he never wavered and stared straight ahead.

The visit went well and the new chair was selected. Unfortunately, it wouldn’t be ready for months, due to insurance approval and all the customizations required. We were just finishing up when the physical therapist asked me about Dear Son’s gait trainer which was sitting in the school hallway. She explained to me that the school could no longer store his gait trainer and asked if I would like to donate it to the school’s Special Needs Program since Dear Son doesn’t use it anymore. “No”, I said quickly. I immediately dropped my head hoping she didn’t notice the flush in my face. She explained that I would need to pick it up and take it home as soon as possible because they no longer had room to store it. I looked up again and said, “O.K.”

Inside, I was dying. I was not prepared for this moment. The excitement of the new chair quickly vanished with the mention of the gait trainer. Dear Son had not used the gait trainer since early 2004, almost two years ago. Back then, Dear Son could walk on his knees but could walk on his feet with the aid of the gait trainer that he used daily at school. He was quite good in the gait trainer providing he had his AFOs (leg braces) on. He could actually run in it and the physical therapist always had to tell him to stop or slow down because he liked to run to the windows to look outside. He also liked to come to a “crashing” halt where he would bang into the window or wall and then grin with delight. He thought that was particularly funny. We had to make one of his IEP (Individual Education Plan) goals to listen and not run into the walls; they called this “planning”. There was a fine line between teaching him to be respectful of the property and containing his excitement of being mobile and able to walk. His turquoise blue eyes would light up like they were on fire and his face would glow. The image was quite striking against his nearly jet black hair. He was so proud to be able to walk; it was like he was a different man although he was only a boy at the time.

Dear Son wanted to walk more than anything for as long as I could remember. Of the three therapists-physical, occupational and speech, the physical therapist was always his favorite because they would work on walking. The other therapists at school used to get depressed because he was so excited to see the PT but never them. Dear Son endured endless physical therapy sessions and hated doing all the required exercises but loved it when the word “walk” would be mentioned. We had the hardest time finding a gait trainer initially because Dear Son has no use of his hands/arms so a traditional walker (gait trainer) would never work. The therapist finally located one with a torso strap and Dear Son was on his way.

I remember the first time I actually saw him walk in the gait trainer. He was about 8 years old I believe. It was the oddest thing because it was the first time he ever did anything on his own, without my help. I kept wanting to help him but I knew by the smile on his face that I needed to leave him alone and let him show me how he could do it. He was so proud.

After his multiple hospitalizations in 2004, Dear Son never walked again. Not only hasn’t he walked, he never stood up again, nor will he ever. It was last summer when his pediatric neurologist had “the talk” with me about Dear Son’s deterioration and explained that he had a degenerative condition related to his gene defect and that he was never coming back. I have learned to accept that but I was not prepared to deal with the gait trainer. Getting rid of the gait trainer, is admitting that Dear Son will never walk again. It means I will never see the fire in his eyes, the smile on his face or the glow when he runs to me in his gait trainer.

“No, I said.” “I will take it home”. So with a tear in my eye and a lump in my throat, I made arrangements to take it home.

Not So Scary

Every day I look forward to 3:00 o’clock. Not only is Dear Son home from school but that is the time the bus drives up and drops him off. On the little school bus, are all of Dear Son’s classmates, including Patrick. I started talking to Patrick some time ago and he is by far the most vocal student on the bus. At first, things seem surprisingly normal and Patrick could relay part of the school day and of course, his entire menu. I enjoyed talking to Patrick because I could get an idea of Dear Son’s day in the “first person” so to speak.

Patrick is a tall and big young man. He stands at 6’1” I am guessing, at 14 years old. My best guess is that he is mentally delayed or has autism although they are not at liberty to divulge his disabilities. What I do know about Patrick is his incredibly sunny disposition. He always greets me with a smile on his face and yells out my name, sometimes even prior to my coming out of the garage to greet the school bus. Some days, he repeats his menu and other days he’ll give me a one word synopis of the day.

Take yesterday, I asked him, “How was school?”, “Did you go for a walk outside?” It was a beautiful day and I was sure they took the kids outside. “Yes”, he said. “Animals”, he yelled out. “Animals”. Nothing more. I didn’t know what had transpired that day at school but somehow “animals” were involved. Upon arriving inside, I read about Dear Son’s day at school in the spiral notebook attached to the back of the wheelchair. I learned they went to the Humane Society for Recreation Therapy were they enjoyed seeing all the puppies and kittens. Hence, the "animals".

I have come to enjoy my conversations with Patrick. Quite honestly, I think about Patrick a lot, especially over the weekends when I don’t hear his sunny voice. I love how happy he is, like a glorious ray of sunshine on a cloudy day. Some days, when Patrick repeats himself, I am thankful for the five minutes with him and not a full day. But overall, I enjoy him immensely.

Recently, I went to Dear Son’s classroom and Patrick yelled out, “Hello, Dear Son’s Mom!” when I walked into the room. He proceeded to identify all the kids in the classroom by their first name,although it was not requested. I thanked him for the introductions. I thought to myself, he has more manners than a lot of children today. It was at that time that I also learned about Hannah, his classmate and girlfriend. Patrick blushed when the information was divulged, but beamed nonetheless.

So all of this brought me back to the early days with Dear Son. I remember the office visits and learning that he would be severely mentally retarded. I remember reading the books about mental retardation where they described how it would be. I remember being terribly afraid of what life would be with a disabled child. When I read these books, I would end up holding Dear Son tightly in my arms, kissing and hugging him, more for me than for him. I did it because although I was afraid of the future, I knew that when I held and kissed Dear Son, that it was all o.k. I stopped reading the books after a while since I didn’t think they were giving me a good feeling about life with Dear Son and I decided to just “play it by ear”.

So, this is it. My five minutes with Patrick every day is far from scary and most enjoyable. Life with dear son is incredible. So, this is what I feared? Amazing, how sometimes it’s just nothing like what they make it.

A Day in the Life of a High Deductible Medical Plan

Sometimes, life is just hard. I try not to complain too much but this new high deductible health care plan has me all riled up. Take the last few days, I tried to do some very simple things, but they took vast amounts of time and energy. My actions, of course, will save an employer some healthcare dollars and you will undoubtedly read about how these new “high deductible” plans are really working well at reducing healthcare costs. “Saving” healthcare dollars, in this scenario, will not be an accurate statement. What they will do is allow fewer resources to people who need it the most and most likely, force them on the federal Medicaid program.

Scenario #1: I need to order prescriptions for dear son. Sounds simple. Traditionally, you’ll pick up the phone or you’ll mail in your co-pays and you are done.

This weekend, I attempted to order some medications for dear son. Dear son has intractable seizures, a vagus nerve stimulator implanted and GI issues related to his rare gene defect. He is on seven seizure meds and two GI meds. Prior to the start of the high deductible plan, I ordered all nine meds via mail order and paid my co-pays. I am almost out of two of the meds. Normally, all nine meds are on a schedule that I have created to make certain I have prescriptions for all nine meds-one prescription for mail order and one for the retail pharmacy.

I spent the weekend counting out all the pills and calculating all the liquid meds on hand. I went into the pharmacy calculator on line and calculated out the strength and amount required for each med. It cost over $1500 retail and over $1200 mail order for 7 of the meds. The other two I did not calculate. After this, I created a schedule for the next four months on what meds I could order each month, so I don’t run out, and because I can’t afford the prices for these meds since I pay for ALL prescriptions 100% out of pocket with the new plan until the high deductible is met.

After all this, I come to find out the ped neuro “nurse” wrote dear son’s mail order prescriptions with the WRONG patient name and they are not valid. (Despite the fact she was sitting in the hospital room looking at dear son when she wrote them.) Ped neuro doc has never made a mistake writing out prescriptions in 14 years and ped neuro nurse writes one prescription and can’t get it right. I can’t afford to order them retail because the retail cost for 30 days for “one” of the meds is $355.00 and the mail order cost for a 3 month supply is $255.00. I need to order three meds and not just one, so the price is much higher. The high deductible plan is costing me a lot more out of pocket but saving the employer some cash.

Scenario #2: Dear son needs a bath. Normally, his Dad gives him a bath once a week because I can’t lift him at 130 pounds into the tub. Son is 14 and desperately needs a bath so I attempt to do this on my own. I use an old bath chair from when he was 6 years old because the insurance will only pay for one chair and his Dad has it. I guess that means no baths at his Mom’s. Dad lives 50 miles away and it’s not feasible to haul the bath chair back and forth. Because I live in an apartment, I don’t make any physical changes to the structure of the building for baths. I have heard the statistic that 90% of all disabled children’s parents get divorced, so we are a statistic. This bath scene is repeated in many households.

The DME limit on the new high deductible plan is $2,000 a year. Do I purchase this bath chair or get the new wheelchair?

Scenario #3: Dear son needs a new tilt wheelchair because he can no longer sit up and support himself and it is compromising his breathing and feeding according to ped neuro doc. He chokes on food because his throat muscles are deteriorating. The last wheelchair costs $10,000. New DME limit on the new high deductible plan is $2,000 per year. Looks like there is going to be at least an $8,000 gap that I can’t afford so I put off ordering a bath chair and getting a much needed wheelchair.

Scenario #4: Dear son is getting heavy due to one of the meds he is on and gains 50 pounds in 6 months. While in the hospital, the physical therapist determines I might need a Hoyer lift at home since it is taking 3 to 4 heathcare workers in the hospital to change dear son’s diapers. She orders a Hoyer lift that arrives in two days in the home. The Hoyer lift does not fit under the sofa nor does it fit under the bed therefore it’s not usable. It’s too difficult to lift dear son in/out of the car and take the wheelchair to the hardware store to figure out what is needed or to get casters to raise the bed and get them installed, so I do nothing and continue to lift him myself.

So, you ask, why not get some nursing care in the home to help with the baths and the caretaking? Because of the high deductible plans, I don’t have money for that.

What about Respite Care? I went through the $1200 limit in 60 days last year when dear son was released from the hospital and couldn’t move. He spent 32 days in the hospital because the surgical nurse put a too large feeding tube in him that blocked the stomach opening so he vomited for months, endured several hospitalizations and nearly died until a radiologist figured it out. I used the Respite dollars so I could get some relief so I could go grocery shopping or for an extra pair of hands to help me out.

So that’s the wonderful world of healthcare. The next time you read about how much money the high deductible plan saves, remember this example. The only reason it’s saving money is because people don’t have the money and aren’t getting services they need. It did nothing to help these patients.

Of course, there is always another option. Get on Medicaid where you don’t have to come up with the money for the prescriptions and you can get some care that you need. Of course, that lowers reimbursement rates for the physicians who do an outstanding job of caring for dear son. We’ll read all the press about how the new high deductible plans saved x% for the employers. We won’t read about what patients, in this case disabled children are doing without, while they are on these plans. We won’t read about it when it drives them to the Medicaid plans, at least until the government figures this out. But no one will of course, because they just don’t get it.

Grocery Shopping

If you have ever tried grocery shopping with a child, you have undoubtedly experienced true joy as a parent. Shopping with a special needs child can elevate this experience to a whole new level.

Take for example, an apple. An apple is an apple is an apple. Not quite. I, for example, prefer a particular brand of apple. I have one type that I like to eat and one type for baking, however in general, I normally buy the same type. This usually entails stopping by the apples and selecting the nicest ones for my lunch. If you have a child with autism however, this would not be the same. An autistic child, as I have been told, will fixate on one particular object. In dear son’s classroom, there was a child (Jack) whose fixation was apples. Taking Jack into the community, was special. Jack not only wanted apples, but he wanted “that” apple. This might not be a problem to let Jack have a particular apple, however Jack typically wanted an apple that was, let’s say, “your” apple, especially if it was in “your” hand or in “your” cart. Once this occurred, the entire visit would entail verbally and physically refraining Jack from taking someone’s apple.

My son is not autistic. In better days, he had more control of his legs, even though he was in a wheelchair. Dear son did not particularly care for grocery shopping. The problems with grocery shopping had to do mainly with time and stopping. Essentially, it took too long and there were multiple “stops”. Dear son likes to keep moving. He does not like to do such things as, stopping for a red light. It simply takes too long. He also enjoys it when we take walks outside. When we walk outside, it does not include stopping. The grocery store then became a game of seeing how fast I could get the item off the shelf and into the cart, without stopping. Should I, by chance, need to stop and look at an item, he would then proceed with Plan B. Plan B involved a lot more coordination.

Plan B was essentially taking his foot and catching it on any item on the shelf and flipping it high up into the air where I would proceed to call his name out in a shrill and hurried fashion and then run to “catch” the item in mid air. He was most successful in the chip aisle. And pretty good at it too. When he was successful at propelling the item, he would inevitably smile and then squeal with delight should the item hit the ground. This pretty much ended the grocery shopping.

Currently, it’s more of a physical issue when I take him to the store. It’s just physically challenging to lift all 130 pounds of him in/out of the car and then to push the wheelchair with my left hand and pull the grocery cart with my right hand. The “up” side to this is that you really don’t ever “forget” anything at the grocery store. It’s too much work to go back; so as I cook during the week, I will highlight each item on my grocery list as I use it, so I don’t forget. Dear son can no longer lift his legs so flipping the grocery items is no longer a challenge. If anything now, it is a delight to take him. He smiles when I put his favorite item into the cart, namely, blueberry yogurt. But today, I’ll forgo those delights and simply wait until he’s back in school to do my shopping.

Defining Comfort

It had been a very stressful morning with dear son, after being airlifted, and who now was on a ventilator. After much issue with the breathing tube, they had finally given him some paralyzing medicine to help stabilize him or rather keep him from extubating the breathing tube. It was hard seeing him, attached to the ventilator and struggling so much. Despite being nine years old, he now seemed younger, mostly because he looked so helpless. The Intensive Care Unit was filled this day, mostly with infants, some having heart surgeries and others for a variety of reasons. I couldn’t help but think that if you had to choose, you wouldn’t switch places with anyone in the unit, because you couldn’t figure out, who was worse or better, depending on your point of view. Dear son seemed more peaceful now, if you could call it that, so I left his bedside to go get something to eat.

I was gone no longer than 15 minutes when I returned there was a small card, left by the clergy, on his pillow, with their extension on it. Panic stricken, I called the nurse to see what had happened. It turned out, someone had called the clergy, and when they arrived, I was not there so they left their card.

It was only a year later, when it happened again. It was 4:45 a.m. when I heard something in dear son’s room and went to check on him. He had begun seizing and the seizure began picking up in it’s intensity. I turned him on his side so he wouldn’t choke and looked at the clock. Once I knew it was not settling down, I quickly called 911 and the paramedics arrived within minutes. They quickly rushed him to the nearest hospital and I soon followed in my own car. Unable to control the seizures, they called the air lift unit from a major academic medical center. The unit arrived, and the young doctor, in his maroon jumpsuit, took command of the ER. If there was ever a time I wanted to see this school’s colors, this was it. He was young, dashing and smart. I quickly glanced at his name embroidered on the jumpsuit and filed it quickly away in my memory. I admired his swiftness and control of the ER. He had a blond crew cut and was very handsome; he looked more like the kind of person that would be in the movie Top Gun, than to be here at 6 a.m. on a weekday morning. He began putting in the breathing tube. I left the ER immediately, since I can not handle that and because I had full confidence in this institution.

I left the ER and headed to the nearest bathroom, to brush my teeth. I thought it would pass the time it took to insert the breathing tube; also, I was a wee bit uncomfortable talking to anyone with morning breath. I came out of the washroom and a woman quickly descended upon me. I was confused at first, since I knew she was not a doctor. I feverishly searched for her name tag and found her name with the word, “Clergy” below it. She started talking to me but I didn’t hear a thing. My mind was racing trying to put it all together when I blurted out, “Did he die?” “No”, she said. She just thought it might be a good idea if she was there. Well, I knew damn well why she was there, they thought he was going to die. I quickly dismissed her and went back to the ER. It wasn’t that I didn’t think I needed her, because if there was a time, this was it. It was just that I didn’t find her comforting. Seeing the clergy at the hospital almost always indicates son is near death. Fortunately, he was airlifted and ped neuro doc took over and rescued him once again. So for this reason, the clergy is never comforting to me in the hospital. It almost always means son is going to die and before I can process that, their mere presence startles me and proves to be more upsetting at those times than comforting. That does not mean that I do not believe in the power of prayer, because I do, but that is the topic for another discussion.

So today, I was taking dear mother grocery shopping. She is almost 80 now and moved downtown a year ago in an effort to downsize. She rents a condo from my dear brother and is slowly adjusting to city life. We had just finished grocery shopping when we were stopped at the light. In front of us was a limousine. I frankly didn’t notice it until she mentioned that my niece really loves limousines. She said that she found it odd that kids today enjoy them so much. Upon further discussion, she mentioned that she supposed she could understand why they liked them so much, because they were associated with such good times. She went on to say how the kids today are accustomed to using them for proms and later for weddings. Still not knowing where she was going, I asked her how she felt about them. She said, “I don’t particularly like them.” “The first time I rode in a limousine was to bury my father. The second time was to bury my husband.” I thought back to the clergy incidents and dear son and nodded to her. “I understand”, I said. And that I did.

Exhaustion

Dear son has today and Monday off from school. Excitedly, I turned the alarm off on the alarm clock last night so “we” could sleep in. It doesn’t happen very often. In anticipation for the big event (This is big once you have kids; who knew?), I stayed up into the wee hours of the morning and finally went to bed after 2 a.m. I have always been more of a night person so this suits me just fine.

Dear son however, had other ideas. His idea of a really great day starts at 4 a.m. or sometime thereafter. He does not care if the sun comes up first. I do. Today, he decided that “we” should get up early. He started at 4:30 or so doing anything he can to wake me up. I kept calling out to him asking if everything is all right, as if he would answer. He has no language however in the midst of a great sleep, I have no recollection. I got up to see if he needed to be changed. No such luck. He fussed some more. I got up and rolled him on the other side. No such luck. This went on and on for some time.

Finally, I did a really bad thing. I turned on the television and used it as a babysitter so I could sleep five more minutes. It didn’t work. Why is it that every extra minute of sleep makes a difference when you have to get up in the morning but going to bed five minutes earlier doesn’t seem to matter?

I finally got up, kissed him on the cheek, said good morning, and proceeded to get his medicines ready and get his breakfast. I came back in the room and he had fallen asleep.

Kids! You have to love them!

Bingo

In the fall of last year, dear son was admitted to a rehabilitation hospital for several weeks. Upon arrival, the little girl in the next room noticed dear son and said she went to school with him. The little girl was not young. At 15, she was in here for her “sixth” hip surgery. She was small in frame, and tiny, thin legs peeked out of her wheelchair. She was a fully developed teenager and carried a little weight in her upper body, if you want to call it that. At 80 pounds, she was clearly small for her age. Her glasses were the size of coke bottles and her teeth were crooked, which was the least of her issues. But it was her smile, that would light up your heart.

This particular hospital was filled with adults. The children’s wing, if you want to call it that, was located at the end of the hall behind glass doors that required a pass code for admittance. The halls were filled with old men and old women, in some stage of rehabilitation, crying out in pain and sometimes just crying out, to whoever would listen. It was most uncomfortable walking down that hall; the old men would yell out to me and call me different names, thinking I was a nurse or a family member they knew. Many of them had other mental conditions that were obvious to me.

So this young girl came to talk to dear son and I. She wheeled herself into our room and began telling me stories about dear son and then about her family. Perhaps the most striking thing to me was that no one came to visit this young girl. She had a mother and father, both of whom worked. She had siblings as well, both who could drive. But no one visited. I asked about her family and she proudly asked if I wanted to see pictures. In her little purse, was one item, her photo album. She beamed as she showed me the pictures. Our conversations every day were always around her mother. She loved her mother. I asked when her mother was coming to see her and she would tell me that she was coming on Saturday because her mother was too busy with work to come during the week. Every day she counted the days until she would see her mother. Saturday came and went and still no mother. I inquired as to what happened and she said she spoke with her mother and that “something important came up” and her mother couldn’t come. She was crushed.

Tuesday night was Bingo night. So I asked her if she would like to attend with dear son and I. She was excited. We attended the Bingo game and at the front of the room, the “prizes” were all marked on the table. The “prizes” were gems such as a t-shirt from a local business, a plastic water bottle, a picture frame and some plastic Mardi Gras beads, much like you would find at a dollar store. The dear girl told me how excited she was and that she had never won at Bingo. She was hoping tonight would be different. I told her that if I won, I would let her pick the prize and keep it.

The room filled up fast. It was the sorriest group of people you could imagine. My heart would break as each wheelchair would enter the room; each person broken in body and in spirit.

The games began. By some stroke of luck, I won the first game. I let her pick the prize. She picked the beads in her favorite colors, green and purple. She wore them proudly. A few games passed and she won. She was so excited. She had never won anything. I was proud of her too even though I knew it was just a game of chance. But, what was most striking, was the event coordinator or whatever you call her. She checked the little girl’s ticket like she was an accounting firm doing a government audit. She made certain that every number had indeed been called and that she had “officially” won. I couldn’t believe it. With all of these issues these people had, couldn’t we make it so everyone won? Couldn’t we maybe look at their cards and call the number so they would win?

You wonder sometimes where the compassion is. Here is an institution that makes it’s money rehabilitating all kinds of broken bones and bone replacements yet they can’t seem to fix the human spirit.

It Takes A Village

Neonatal Doc had a post on February 24th titled, “Futility”. He raises the question as to whether futility in some instances, can really be defined as a quality of life issue.

One of the responses came from “that girl”. She states that,"parents of severely disabled children may tell you that caring for them is exhausting, gut wrenching, stress-inducing, expensive and time intensive but that she found it “amusing” that these parents were the first to step up and protest against suggestions that they not prolong life (through ventilation, etc.) because their children have defied the odds". She raises the point that perhaps some parents of special needs children should have the option of not continuing, if they have reached the ends of their rope. Some people, she says, would answer that this is the worst reason to deny care. You can read the rest of it on neonatal docs site.

I think that prior to having a discussion on the quality of life issues for these severely disabled children and/or the parents choices regarding continuing and/or denying them care, that we need to do a better job as a society to make it easier to care for these children and their caregivers so that they DON’T reach the point where they want to deny care or give up their children so they live the remainder of their life as a ward of the state. Nobody wins in that scenario. I also don't think, that because it's hard, they should get the option of opting out. My post today, will only address things that we can do to help special needs children and their families so they don’t get to that point.

We tend to think of “good care” in terms of taking care of these children medically. But we need to step back sometimes and look at the larger picture. I have identified several ways below, that we could address immediately, that would vastly improve the lives of these children and ease the burden on caregivers.

Daycare-Our schools are overflowing with disabled children yet we have no daycare for them. We expect these parents to work but have no resources for them. There are a handful of instances where we are now recognizing that-like the Easter Seals and some organizations offering some care but it typically ends at age 5 or 7. In my son’s current school system, I asked what percentage of the parents of special needs children would take advantage of daycare, if it were offered tomorrow, and the answer was 60%. Currently, for these parents, there is NONE. I remember working full time a few years back and attempting to find daycare. My employer had resources to help employees find daycare for each child. They were unable to locate any provider who would accept disabled children despite initially saying they would over the phone. We need to require daycare providers to provide care for all children. While the law states that they can not discriminate based on ADA, most don’t because it increases their ratios and cost them more money. We need to have care for them and care that is good and safe, like we do for our “normal” children.

That leaves most parents with option B. Finding their own care. If you find your own care, you will be paying out of your pocket, for all of it. If you find your own care, then you can not take advantage of your employer’s 125 plan for daycare since the funds must be paid to licensed daycare providers. In most cases, you do not have any licensed daycare providers that will take them even though by law they can not deny them. Therefore, it’s more expensive for you than for other parents.

School lunches-The state says that all schools that receive funds for school lunches must provide them to every student. If they do not do this, they can lose their funding. Yet, if you have a child that needs food pureed or chopped, they can’t do it and they won’t do it. Most school menus do not have lunch items that disabled children can eat, so it’s usually not an option. I have had to make a school lunch every day since my son was three. If most parents had to do this and work, they would be lined up around the building demanding change.

We do nothing in terms of offering 401(k) retirement plans for disabled children. If the parents of disabled children were able to save tax free for their children’s retirement and their own and were allowed hardship withdrawals, we could lessen the government's long term financial care for these children. We have some children that have full life expectancies yet they will never work; we need to do something for them. We could easily define disabled children by using the government "medical" definition as it relates to Social Security Disability.

We offer many programs for children going to college, but virtually nothing to help these children, who will never go to college, get much needed education, therapy and equipment outside of school, to raise their quality of life and ease the burden to caregivers and society.

We have inadequate 125 plans. These plans allow people to set aside a portion of your wages pre-tax to use for medical expenses. There are some instances, in the case of divorced parents, where only one parent can take this. We need to review these plans and in cases where only one of the parents has a employer based medical plan that is primary for the child, and/or the other parent is not working or does not have an employer based plan, that plan should allow for the employee to use the 125 plan. A 125 plan can be used as a cash flow manager to make it easier.
I have heard a statistic that 90% of all parents of special needs children get divorced. Where's the benefit?

Respite care-We don't have enough of it.

Prescription Drugs-Costs are skyrocketing and with the new high deductible plans, it is difficult to pay for the necessary prescriptions. In these plans, there is no co-payment and you pay for the drugs out of pocket. My son has nine prescriptions with a retail cost of $1800/month or a mail order cost of $3,936/month. Yikes! Some of the plans leave you no choice but to subscribe to Medicaid to be able to afford the prescriptions. Then of course, if you bail, the statistics will show that the high deductible plan was a success and more employers will adopt them sending more medical expenses through the federal government.

Finally, what do hospitals or major academic medical centers do to make it easier for these patients and their caregivers? I have been to 20 hospitals in my area over the last fourteen years and only "1" had a changing table that I could change a 10 year old disabled child when I take him to the bathroom for an outpatient visit. Many of these hospitals are major academic medical centers that are loaded with pediatric specialists but where is the support? Why not have a hospital bed that can be raised or lowered in the bathroom with disposable paper that can be placed on the bed for changing? A simple curtain that pulls around the patient would allow for privacy. Currently, I have to bring changing pads and lie them on the floor to change my son in full view in a woman’s washroom. At 130 pounds, it means I have to be able to dead lift him off the floor and into the wheelchair when I am done. No wonder parents are tired and exhausted. Would your nurses ever be able to do this alone to care for "one" of your patients? Where are your priorities? Look over your mission statement or your care statement that you hand out to every patient when they come through the ER. All of them say that you treat your patients with dignity. Does treating your patients with dignity mean allowing them to be changed on the bathroom floor in full view of other patients? Think about it.


Feeding tubes-I can’t begin to tell you how many nurses that provide pediatric care at facilities that are Level One trauma centers that do not know how to use a feeding tube to administer medicines (both liquid and pills) and/or for feeding. I had one nurse who tried to put the medicine in the wrong end of the feeding tube and broke the balloon on the feeding tube at midnight. They did not have any feeding tubes in the hospital and/or the emergency room. The only place they kept the feeding tube was in the clinic that opened at 8 a.m. Without the medicine, my son might have seizures. I had to drive home to get my spare feeding tube and drive back, a round trip of three and one half hours. I have also had nurses crush a pill and draw the dry contents up in a syringe and try to administer it via the feeding tube. This feeding tube issue has gone on for three years at this facility and they tell me every time that they are addressing it and teaching their nurses.

If your child is discharged from the hospital with prescriptions, you have to take the child home, stop at the drug store, take your kid in the wheelchair to get a prescription that could have been dispensed by the hospital pharmacy and added to your hospital bill or ran through your insurance card. Stopping at a pharmacy with a drive through is sometimes not an option because some prescription plans specify which pharmacies “must” be used for reimbursement or the reimbursement is “zero”.

Also, it would be nice one day to drive into an academic medical center and have someone near the handicapped parking to assist with getting patients in/out of the car. This is a far bigger issue than you might think. A friend of mine was crying after an office visit at the stress of taking her daughter to an Easter Seals visit on a rainy day and having to fight with the wheelchair in the rain, with a child in a full body brace and try to get the kid to the appointment. It is very hard work. Instead, we have facilities putting plasmas tvs in every room or salt water fish tanks in the lobbies to make the place look beautiful. Heck, we have greeters at Wal-Mart but we can’t get people to help us at for an outpatient visit. People think valet parking solves the problem, but it doesn't. It often costs more and poor families can't afford it.

When we level the playing field and do a better job addressing the needs of our special needs patients, then maybe we won’t have parents who want to deny care or parents who want to give up their children or have their children taken away. As Hillary Clinton, once said, "It takes a village".