What A Background Check May Not Show About Your CNA

Amanda has had a caregiver for nearly two years. Finding the right person is extremely difficult. First you need to determine whether you are hiring the person directly or using an agency. 

The ideal situation is to hire someone you know or someone who has been referred by a friend or neighbor. It isn't always possible. If you use an agency you will have a stranger in your home. I've been fascinated (appalled?) by the stories some of caregivers provided by agencies have shared with me.

All of the caregivers we've had have passed a mandatory background check so you'd think their pasts and personal lives would be free and clear. Think again.

Laws vary on checking criminal history depending on your state. Some states don't allow questions about arrests or convictions beyond a certain point in the past. Others only allow consideration of criminal history for certain positions.

Most states allow a check for felony convictions in the past three years. A felony is a crime which carries a jail term of more than 12 months. So, a clear background check only confirms that the person hasn't been convicted of something like assault resulting in injury or with a weapon, a theft of over $500, sale of illegal drugs or rape.

Here's the catch.  The words felony and conviction. People can plea bargain a felony charge down to a misdemeanor in exchange for cooperating with the authorities. 

How do I know this? A caregiver told me that she had been to jail for selling drugs and carrying a concealed weapon, but the charges had been reduced because she had provided information about other dealers. 

There is also the issue of associates. One caregiver complained to me about how hard it was for her and her boyfriend to find a place to live. Why? Because he was convicted of statutory rape and had restrictions about living within certain distances of schools, parks, etc.  

Another caregiver told me that she had lost custody of her own children in her divorce because she was living with a convicted sex offender. 

Others told me about minor arrest records for offenses like driving under the influence of alcohol. Traffic violations often show up on a background check as they are public information. The agency knew about these but didn't disclose the information to me. This is critical as aides may need to transport Amanda to doctors and therapist appointments. What if one of them had been driving drunk with Amanda in the car?

In addition to potentially dangerous situations I've had many aides who just have a terrible work ethic. I've had aides show up late,  fall asleep on the couch during the day, bring their kids and their pets -- one even took a shower while she was supposed to be caring for my daughter. I've had aides ask to take home my extra set of dishes, buy them expensive gifts or order takeout food for them. I've had caregivers spend hours on their phones or IPads; others who have refused to do parts of the job like getting Amanda off the bus if it was cold or raining.

Check out these general guidelines from MSN HealthyLiving. 

"Keep in mind that aides are employees; don't try to make them your friends. "People are so happy to have help that they often treat the employee like a friend, and that creates problems down the line," says Dollar. If your employee thinks of herself as your pal, she may be more likely to take liberties... The bottom line: keep it professional."  

A personal assistant or caregiver is a difficult position to fill because it doesn't pay much better than minimum wage jobs. Sadly, these are the working poor.  Many are living hand to mouth. Even though they are working they are often on food stamps and other forms of public assistance. I give them credit for working and trying to support themselves and their families. I often feel very bad for their personal circumstances. 

On the other hand, their poor decision making skills make me uncomfortable having them in my home caring for my disabled child. Amanda can't speak.  If someone steals something, shows up drunk or mistreats her there is no way she can tell me. 

I don't know the secret to finding a good caregiver, but I've certainly had plenty of experience with bad caregivers!

Why We Need Special Needs Sensitivity Training for Medical Professionals

It may sound like I'm whining today. Maybe I am. However everything I'm about to say is true. It may be a truth that most people don't want to face or admit to, but that doesn't make it false. 

The plain truth is having a child with special needs is hard.

I don't think medical professionals understand how hard.  Doctors and nurses often understand the science behind a disability without having any grasp of its impact on human lives.They should take a short sensitivity training course focused on talking with the families of children with disabilities.

We've run into a number of insensitive doctors and nurses during our 14+ years as parents of a child with special needs. I'm not discounting those that are kind and compassionate,  but they are surprisingly few and far between. Most doctors and specialists don't even bother to call us by name during our appointments. One surgeon called Amanda "munchkin" for years. I thought it was sweet until I heard him call the patient in the next room - and the room after that - munchkin as well. He didn't know any of their names.  I don't know if the study of medicine drives the humanity out of doctors or if they enter the profession because they are able to see people as bodies rather than personalities.

Today I took Amanda to the Genetics Clinic at Children's Healthcare of Atlanta (CHOA).  It was a dismal experience. Not because we got bad news - or any news at all - but due to the staff's attitude.  The nurse practitioner actually said, "I wasted 3 -1/2 hours reading your daughter's file and since I have a photographic memory now I'll never be able to forget it." 

Genetic testing is harmless - a cheek swab or a minor blood sample. Nothing compared to what Amanda has been through already. We were hoping to find other instances of the same deletion to possibly predict Amanda's potential medical problems going forward. We hoped that a more detailed analysis might explain why she was so much more impacted by this deletion than the few other cases we've discovered. The nurse's comment was uncalled for and unprofessional.

I wanted to ask why she bothered to read the complete file if she saw the original genetic test results and decided not to pursue more advanced testing at this point. Or why she hadn't cancelled the appointment based on this decision so we  didn't "waste" 3+ hours of our time as well?

It wasn't the first insensitive comment I've heard from a medical professional, just the most recent.

One of the first, and most memorable, was the Children's Healthcare neurosurgeon
who told us Amanda "would always be funny looking" when she was an infant. 

Or the original CHOA geneticist who was actually so excited to discover that Amanda had a rare chromosomal anomaly that she called us to deliver the news right before Christmas.  In her excitement to find a unique specimen she didn't think about our daughter as a person or us as a family. She never considered how the news would forever alter Christmas for our family. No letters to Santa, no running to see presents under the tree...

Learning that your child has a condition that will result in permanent mental or physical impairment is the emotional equivalent of being told your parent is dying. Your family changes irrevocably in that moment. Your life will never be the same. You grieve the loss of the healthy child you expected almost as if the child had died. 

And while you have a living child, the rest of your life will be difficult, expensive and confusing.  You will have to learn more than other parents about development, medicine, therapy and biology. You will read about things only doctors typically know. You will have to do things you never considered doing like changing a feeding tube or fixing a wheelchair. And it will never, ever end. It will change. Some things may improve, but it will never end. 

Whenever you get a new diagnosis, no matter what it is (autism, mental retardation, scoliosis, etc.), the pain kicks in again. You grieve again. Sometimes you see it coming; other times its a kick in the gut.

I remember taking Amanda for a routine hearing screen. She sat in the booth, looking around, but completely unresponsive to the noises being generated. She didn't turn toward the sounds. She didn't even move her eyes in the correct direction. She didn't react at all. I didn't realize that she was supposed to. 

After a few minutes, the audiologist turned to me and said,"I'm sorry to tell you that your daughter is completely deaf."  No forewarning. No softening the blow. Just her cold, dispassionate assessment of the situation. 

I sobbed uncontrollably during the drive home. It seemed like Amanda had been robbed of something so fundamental. To never hear her parent's voices, to never listen to music or marvel at the sound of crickets and frogs at night seemed desperately unfair when she already had so little. It was only when Kevin pointed out that if we used the remote to "click" the TV on Amanda would turn to look at it that I realized the audiologist was wrong. It wasn't that Amanda was deaf; she just wasn't interested in the noises.

While I was relieved by his observation I had to question what made the audiologist so certain - and what made her deliver the news with such a lack of empathy.

I came to the conclusion that she had no concept of the bigger picture. I doubt medical professionals know how many doctors and therapists the average family of a child with special needs sees, how many appointments they attend, how much bad news they have already heard during their child's short life. Every new diagnosis seems like another nail in the coffin. Every treatment denied is a new heart ache.

Today the nurse practitioner said, "Its not like her genes are going to change" to justify her denial. Did she think I didn't already know that? She made no effort to consider what the past 14+ years of my life - and Amanda's - had been like despite having allegedly spent hours reading her file. 

Not for a second did she consider why, after more than a decade, we would come back looking for answers. She didn't know how depressing it can be to change diapers on your teenager. How painful it is to be feeding a 14 year old baby food when other kids her age are going out for pizza with their friends. How frustrating it is to look into a future that will never, ever change. To know that you will never have a normal family vacation, that you can never go to the store or a movie without hiring a caregiver, that you will be spending thousands of dollars a year on diapers  for the rest of your life.

Forget the emotional impact of daily life,  consider the feelings the facts might create in a parent. 

She didn't think about what it was like to have child that didn't take her first steps until she was five and a half years old. She never wondered what it would be like to never hear your child's first word. She didn't consider how we as a family had managed nearly a dozen surgeries. The nurse didn't think about trips to the emergency room for falls, broken bones or seizures. She didn't take into consideration the number of times I've seen my daughter cyanotic, the times I've listened to her struggle to breathe, the times she's been on oxygen or the horror of seeing a crash cart raced into her hospital room when her heart stopped.  Even though every one of those facts was in the file she told me she had memorized. 

She should have realized that all I was looking for was, not a solution, but a glimmer of hope in an otherwise hopeless future. 

Having a child with special needs is extremely stressful. Imagine the normal difficulties of a marriage and raising kids then add in the extra burden of a child in a wheelchair, completely dependent on you for everything.  Imagine a 150 pound adult that you lift and carry and care for as if they are an infant for decades. Imagine the expense of diapers going on for years and years and years. Imagine the thousands miles you drive to go to four therapy appointments a week just hoping your child will be able to walk or talk or feed themselves   Imagine not being able to find care for that child so you never get a minute to yourself. Imagine having to give up your job, your marriage,  your friends because you can't leave that child alone for more than a minute and no one else can or will care for them.

Medical professionals need to see the reality behind the 15 minutes they spend with us as patients and parents to what happens during the other 23 hours and 45 minutes of that day. Without an insight into our lives it is no wonder they treat us more like lab specimens or inconveniences than people struggling to survive a very brutal life.


I've collected the following comments* made by medical professionals from other parents of children with special needs:

"One of the worst comments that was written about me was "mother does not like clinician's attitude". Well, duh, throw a diagnosis at me, go on about how this is the youngest child you've ever seen with this syndrome gleefully send off medical students to research it (and not ask permission) AND then it gets thrown on us that my son doesn't even have this syndrome. Think I was entitled not to like the attitude."

 "'...an IVF baby - well what do you expect cause you weren't meant to have a baby'. The 2nd was 'Oh, you had IVF and you spent all that money - such a shame that you got a disabled one'. "

*used with permission

Accessible Christmas Around Atlanta - Lake Lanier and Stone Mountain

During the past week we've explored two of greater Atlanta's major Christmas events - with two very different reactions.

Lake Lanier Islands Magical Night of Lights

First, let's talk about Lake Lanier Islands Magical Nights of Lights. The only magic here is that so many people are willing to shell out $60 a carload to enter the worst traffic jam of their lives. I'd been wanting to see these lights for years and we decided to go last night - motivated by a double $10 off coupon. Sad when $40 a car sounds like a deal.

The experience reminded me of when we first moved to Atlanta. People kept telling me how wonderful hot boiled peanuts were. How they looked forward to finding them at roadside stands in the fall. What a delicious treat they were when finally located. When I saw a stand on the way to Florida I talked Kevin into pulling over. A grizzled  old dressed man in camouflage clothes sat by an open fire, with a boiling pot hanging over it. I was so excited - I was finally about to have my first hot boiled peanuts! We paid him $4 and he dumped a scoop of something from the pot into a brown paper bag. I looked inside. Hot, wet peanuts - still in the soggy shells. They smelled bad, they looked bad - they tasted awful.

Lake Lanier Islands Magical Night of Lights was equally disappointing. It was hot boiled peanuts all over again. Maybe if you've been exposed to it your whole life you develop a taste for it. Otherwise, it ranks as one of the area's largest disappointments.

The lights are nice. Many of them are animated. I imagine if this had been developed in the 1950s people would have gazed in wonder at the sight. As it is even my 6 year old was "bored, bored, bored," in her own words.

On the plus side, as you drive your own car the lights are completely handicap accessible. You can control the level of stimulus by opening or closing your windows as well as adjusting the volume on the radio if you chose to tune it to the suggested station.

We paid our money and drove through the gate. We proceeded - slowly- for almost a hour through 6 miles of lights. What they don't tell you is that it is more like 3 miles, because you drive to the end and turn around, and drive slowly back through the same lights. The speed barely registers on the speedometer.

Many of the light displays are just ads from local companies - Coca Cola, Georgia Power, etc. After you crawl through the lights you are forced into the "concession area". There is limited parking - which is ironic since they make every car enter the parking lot. However, we found a parking spot (thanks to flashing the handicap permit at an attendant) and explored the carnival.

It was on par with any other local carnival. The rides were a bit "vintage" (translation: old). There was a thrill factor to the Ferris wheel simply because it felt as if you could easily fall out of your open swinging seat. I love carnivals so even in 34 degree weather I had a good time. Rides averaged $3 per person. A pony ride was $6.

Like any carnival, it was hard to push a wheelchair around due to all of the electrical cords. A big problem was also a lack of curb cuts on the sidewalks around Santa's Village gift shop. We had to bump the wheelchair down the curb backwards to get onto the fair grounds. It was impossible to bump it back up and we just gave up and took Amanda back to the car.

We avoided the gift shop and the paid photos with Santa. The ice skating rink is a novelty and reasonably priced at $10 per person including skate rental.

We spent a total of $63 on the drive, rides and a box of popcorn. Boy, was I happy I had that double coupon! I could easily see a family of 4 spending $150+ on an evening here. Even at my "bargain" price I felt slightly ripped off. Like boiled peanuts, this is something I only needed to try once to discover that I did not like it.

In the video you can see the cars who have turned and are coming back through the lights in the opposite direction.

Stone Mountain Christmas

Stone Mountain Christmas, on the other hand was lots of fun. First, if you are Mountain Members its included in your membership. So, for us, entrance was free. If you aren't members the cost is $28 per adult and $22 per child. Truthfully I might be more critical if I had paid $106 for this experience. It wasn't worth $100+. If you want to go, consider purchasing the Mountain Membership.  For twice the price of the Christmas admission ($56 per adult, $44 per child) you get unlimited admission to the park and free parking for an entire year. Regular membership includes a $10 discount off Snow Mountain - the deluxe membership includes free admission to Snow Mountain as well as free admission to the Summit Sky Ride and the  Ducks.

So keeping the cost factor in mind our experience at Stone Mountain Christmas was  a happy surprise. No one had ever told me about Stone Mountain Christmas so I had no expectations to be dashed. I discovered it because we are members and I was looking for something inexpensive to do. Like Lake Lanier, there are millions (no exaggeration) of lights at Stone Mountain for the holidays. Instead of driving through them the central area, Crossroads, is decked out so you can stroll through the displays.

Even the miniature golf course is decorated with thousands of little white lights, making night time golf a special treat. Part of the miniature golf course is accessible with a wheelchair - part is not. There is a sign which redirects you to the accessible holes partway through the course.

If you like, you can take the 30 minute train ride around the mountain. Holiday lights have been set up along the route so its a pretty ride. The rear car of the train has a wheelchair lift and staff are very helpful. There are ties to anchor the chair safely during the ride. The only downside it that it is an open air car and can be chilly. During this time of year they play Christmas carols which Amanda really enjoyed.

There is a small parade every evening at 6 PM. I think we counted six floats. The parade features the characters from the shows held in the park during Christmas so don't be surprised to see an alien robot dancing down the street. It was cute, but not something I would rush to see. The girls both liked it. Staff were very helpful and made sure that Amanda had a good view of the parade.

 

We were lucky to see the Georgia Bubbleman when we were there. He was wonderful! He created bubbles of all sizes and let the kids chase them. He made a special effort to include Amanda in the fun - coming over and blowing bubbles all around her wheelchair. He even gave an impromptu science lesson by blowing bubbles using the heated air from one of the fire pits. 

 

 

There are several shows throughout the area: Toyrific, Forever Christmas, Holly Jolly Cabaret, A Crossroads Christmas Carol, Visit with Santa Claus. There is also a "4-D" holiday movie, The Polar Express. On select nights (at 9:45 PM) there are fireworks. From the outside, I could tell that the shows are loud and may be a problem for people with sensory issues. We didn't make it to any of the shows or the fireworks so I think we'll go back. When we do I'll expand this entry!

However, just the fact that I would go back (again the same year) demonstrates how much more enjoyable we found Stone Mountain Christmas. If you are going to drive almost an hour outside of the city for one holiday event (and spend $100) I would chose Stone Mountain hands down over Lake Lanier Islands.


Note: This is my opinion, based on my family's experiences. I wasn't compensated in any way by either location.

 

Surgically Assisted Rapid Palate Expansion (SARPE) from a Parent's Perspective

 

This is the roof of Amanda's mouth. You can see that her palate (roof of her mouth) is only several centimeters across at the top. As a result of this narrowing her teeth are overcrowded and crooked. She has had several teeth pulled, but it hasn't helped enough.

Now she has to have surgery to correct the problem. Since she is nonverbal it is hard for me to know if she understands what will be happening. It's also hard to know how she will be feeling after the surgery.

Luckily for us there are lots of firsthand experience blogs online for me to reference. I contacted Brandi at Happygoplucky as her surgery was just completed this summer. She was realyl nice - wrote back immediately. I'm sure I'll be in contact with her often as Amanda recuperates.

So, future posts will be on our experiences as parents, rather than as patients. I hope that we can help other parents whose child with special needs - or without- has to undergo this surgery. Stay tuned.

I have just register my blog with Technorati. It will help my blog appear on more searches. I just  need to publish this

claim token: HHZJ48ARHN89

http://www.imperfectlypossible.com//feeds/posts/default

"Oh, no! My Child Has to Have Surgery!"

I've been thinking a lot about surgery lately. So much that I actually thought I'd written about this already....

Years ago I was waiting while Amanda had leg surgery. We were sitting in the Day Surgery Lounge of Children's Healthcare. Near us was another family, the mother sobbing hysterically in her husband's arms. I wondered what their child could possibly be going through to have her is such a state. After about an hour she collected herself and sat quietly waiting.

When the nurse brought them back to see their child I overheard her husband say, "There, I told you a tonsillectomy was nothing to be scared of." It was all I could do not to laugh! All that drama for tonsils? Seriously?

Then I remembered Amanda's first surgery. The first surgery is terrifying for parents, whether it is open heart surgery or a tonsillectomy.

In February of 2006 when Amanda was 6 years old she had strabismus surgery.  I was scared and frustrated. We'd had her wear a patch for ages in order to avoid surgery and now we still had to go through with it.

However, it was obvious to us that she had little or no depth perception. When doing a board puzzle she would put the correct piece near the space and the randomly slide it around until it clicked into place. We had her using sippy cups because she would try to put her cup on the table and miss it by an inch, the cup crashing to the floor. We could see it when she was walking with us. If she got to a change in surface, even a different color tile, she would pause and test it with one foot to see if she could contiue or needed to step up or down. We hated the idea of surgery, but we could see how it would improve her life if it worked.

See how her left eye is drifting?

In retrospect it was a relatively minor procedure, but at the time it was very scary. I remember waking up at 5AM to get her ready. I was worried that she would be hungry, but she was so sleepy that it wasn't an issue. I bundled her up in her favorite fuzzy blanket, put her in the car in her pajamas and drove the hour to the surgical suite.

Now I know that surgery that doesn't require hospital services is generally considered safe surgery. If the doctors can perform the operation in an outpatient surgical suite they have all of the necessary safety equipment and an anesthesiologist present, but don't expect any complications or an overnight stay.  But I didn't know that then.

We checked in to the office at 6 AM. After waiting a few minutes we were brought back to a pre-op area. We waited in our own space with 3 walls and a curtain for privacy. There was a gurney for Amanda to lie on and a chairs for us. They let Amanda stay in her own pajamas. They gave her a little "loopy juice" (versed) to make her sleepy and help her forget the procedure, then they covered her with a warm blanket and wheeled her through the curtain.

I stayed with her as long as they would let me, holding her hand all the way to the doors of the surgical suite. When the doors closed behind her I realized that tears were streaming down my face. Amanda had only been away from me while she was at school. I felt so helpless with her out of my sight, out of my control.

My husband was surprised that I was crying. He knew logically that it was a short, safe procedure. All I knew was that my baby was being hurt. In that moment it didn't matter that it was the right thing to do.

It really was a quick surgery. It think the actual procedure lasted about 30 minutes. After that she was in recovery for another half hour or so. We left the surgeon's office by 10AM.

At first Amanda's eyes were blood red. It was kind of creepy, but the blood cleared in a few days. Best of all her eyes really weren't drifting anymore. We could see her really looking at things - both eyes focused together. It was surprisingly cool. It made me wonder what the world had looked like to her before the surgery.

Amanda still wears glasses. She has progressive myopia that had nothing to do with the amblyopia and strabismus. Happily, her depth perception is much better thanks to that surgery.

No parent wants to put their child though a surgery. However we've learned that if there is need for surgery, there is no point in waiting. I don't think doctors lightly suggest surgery. I'm fairly confident based on our experiences that they will always try other, non-invasive methods first. Before eye surgery Amanda's doctors tried glasses and patching. Before back surgery her doctors had her go to physical therapy and wear a brace. Only in an emergency will most doctors suggest immediate surgery. When Amanda broke her hip and the doctors said it needed to be surgically pinned as soon as possible we didn't hesitate. She had surgery within hours of arriving at the Emergency Room.

If you are facing non-emergency surgery for your child,  you have the opporunity to alleviate some of your fears beforehand. Sit down with your child’s doctors and ask the questions you need answered to make an informed decision. Ask about the risks of surgery, the surgery itself, how the doctor thinks the surgery will help and what to expect to after the surgery. Ask for an email address to contact them if you have additional questions. I often find myself with questions after I've left the office. If you are still unsure, get a second opinion from another medical professional. It can only help in your decision-making process.

However, if your child needs surgery don't be surprised if the doctors tell you the worst case scenario. For liability reasons they have to warn you about the risk of blood transfusions, comas, even death. THAT DOESN'T MEAN THAT WILL HAPPEN! It just means that there is a risk to any procedure. It may mean that one or more of those things has happened to a patient somewhere, at some time during this specific procedure. In this age of litigation doctors have to warn you of any and all possible risks or they may be sued for malpractice.

And, speaking from experience, if something does go wrong you are in the best place to handle an emergency. Amanda has had a blood transfusion (so have I) without any complications even though it was unplanned. Following hip surgery her lung collapsed. She was treated immediately and although it resulted in an extended hospital stay she has had no long term complications.

I've found that other parents are often the best resources. They will tell you truthfully about their experiences, good and bad.We are lucky to have a resource in the U.S. called Parent to Parent. They have a nationwide network. They will try to connect you with another parent whose child has undergone the same procedure.  We were very lucky to have a family in Atlanta to talk to before Amanda had her spinal fusion. In fact, the mom was so kind that she showed up at the hospital with magazines and snacks.  She even moved a more comfortable chair into the room for me. Talk about supportive!

Now we have been through nine surgeries with several more on the horizon. I say "we" because although Amanda has the surgery it impacts our entire family. My advice is simple. Do it if it is medically necessary to improve your child's health or quality of life. Don't do it casually. Research the proposed procedure online. Talk to the surgeon and other parents. Find out what the recovery will be like and what the potential downsides may be. If you are concerned about blood transfusions donate blood in advance of your child's surgery to be used in an emergency. Do your best to prepare yourself and your child,  then be confident in your decision knowing that you have taken a careful approach. But expect to be scared - after all, you're a parent. Its part of your job to worry about your child.

Am I a Better Person Now? No, Not Really...

Amanda is disabled.  And, yes, I used the politically incorrect term deliberately. Amanda is essentially a 120 pound baby. She walks only with assistance. She doesn't talk. She needs help feeding herself, dressing herself, bathing herself. She still wears diapers. While she has special needs, she needs so much more than that simple term encompasses.

I am a different parent than I would have been if I hadn't had a child with a disability.

I am not a different person, however. I am no more patient than I was before her birth. I have simply learned to act patiently because losing my temper gets me nowhere.

I am just as vain as I ever was. However, I have put myself second to her needs for 14 years. I rarely have the time to put on makeup or the energy to exercise. That doesn't mean that I have achieved some deep inner peace that allows me to be okay with the way I look.

I am still selfish. I want more than anything to do the things I did before she was born - go out with friends, ride horses, work. I just don't have the luxury of acting selfishly.

Parenting requires sacrifice. Anyone with a child knows that. It doesn't matter if your child is a healthy, typical child or one with special needs.

However, parenting a child with a disability changes your life in ways you might never expect. I am always surprised when people compliment me, saying things like "You have such strength." No, I don't. I am weak and vain and selfish. I'm apparently just a really good actor.

Sometimes I think parenting a child with special needs must be a little like alcoholism. The hardest part is accepting that there is a problem. You have to confront the reality that your child and your life will not be like most people's.

 

You have to learn that it's okay to ask for help - financial, educational, emotional... And, its okay to accept help you didn't ask for. For me, one of the hardest things was learning to let someone else give me a break sometimes.

 

I remember struggling with the concept of accepting aid when Amanda was little and I first considered applying for Medicaid. A combination of pride and the sense of permanence -the idea that if I put it on paper it would be real - prevented me from filing the forms initially. I finally decided that it was no different from accepting a HOPE scholarship - especially as I knew she was unlikely to ever attend college.

I remember sitting in the Welfare Office with my then 2 year old, waiting to be interviewed. It was winter and the room was filled with people waiting for heating assistance and food stamps. I almost walked away. Not because I didn't want to be near them, but because I hated the idea that if Amanda got Medicaid someone else might be cold or go hungry.

I'll never forget an elderly lady, dressed in clothes that were clearly cast offs asking me if she could pray for my baby. There she was, cold, tired, possibly hungry - and she wanted to pray for us. I was stunned by her generosity. That was the moment that I knew it was okay to accept help.

I am not a better person because of Amanda's disability, but I do think I'm a better parent than I would have been.

Are We Alone?

Amanda has a genetic deletion (monosomy) on chromosome 15 (q21.2-q22.3). When she was first diagnosed in 1999 there was very little information on her chromosomal deletion. We were given one article starting with "There have been only four reports of deletions in the more distal 15q2 region,2-4 all involving severely handicapped infants." Looking at the chart two had passed away by their 3rd birthday. Discouraging news for new parents.

Amanda not only survived her third birthday, she thrived. Although her development was delayed she continued to grow and remain healthy. She started walking at 5 1/2. When tested at age 10 her development was on par with a typical 2-year old, causing her to be classified as "severely delayed." Still she was progressing and, most importantly, she was healthy and happy.

However, we have been alone this entire time. We have never met any one with a similar chromosomal deletion. There are no support groups when you are one of six known cases of a disorder. There are no marathons for financial support. No special T-shirts or car magnets. No one to talk to.

Amanda's life has been a series of unknowns. Will she walk? Will she talk? Will she need surgery for this or that? Without a network of other families we've just had to wait and see, always hoping for the best.

I worry because the ages of the survivors in the paper we were given were 15 months, 14 years and 18 years old. The article came out in 1990. The oldest would now be forty. I hope they are all well, with happy and fulfilling lives. But there is no way of knowing.

Recently I've noticed what seems to be a slight deterioration in Amanda's overall health. It is nothing serious, but enough to concern me. For instance, last fall she had several clonic/tonic seizures (grand mal). I wish I had someone who had been through this before me. Someone who could say,"it's okay - its just part of the syndrome sometimes." But I don't.

oxygen converter

Amanda has always had some breathing issues. Having been through multiple surgeries we know that she takes a while to come out of it after sedation or general anesthesia. We expect it and don't worry about her coming back to the room on oxygen - her pulse oxygen level in the low 80s. However, last year after hip surgery she unexpectedly crashed.

Doctors and nurses rushed into the room with a big machine. It turns out she had actelectasis - her right lung had collapsed. They moved her to pulmonary ICU. She got breathing treatments. Every few hours she had to go through percussive therapy. She was released after five days in intensive care. She came home with canisters of oxygen and a huge, purring oxygen converter.

Later that year, while sedated for a bone density scan, she became cyanotic three times in eleven minutes. I was in the room since no one had expected complications. Watching the doctor and nurses rush to clear her airway and provide oxygen three times was not fun.

Look at the bluish tint around her eyes -
even on oxygen she was cyanotic.
 

Finally, last week after a relatively short time under anesthesia (less than 2 hours) for a CT scan and MRI she returned looking cyanotic. Her nail beds and lips were bluish. The area around her eyes looked bluish gray. Her breathing was obstructed (like intermittent snoring) even though she was on oxygen.  There is something extremely frightening about listening to your child struggle to breathe. Breathing is so simple and fundamental. It's autonomic; it's not supposed to be a struggle.

I wish I knew there were others who had had these symptoms as well. I wish I knew if they are typical for her condition or if they may indicate something worse on the horizon.

I've always considered Amanda one of the lucky ones because she survived infancy. I assumed that if she made it past that critical period she would be more or less fine. Now, I'm starting to wonder what to expect. I wonder how those other survivors are doing. What are their lives like? Do they have the same symptoms? Have they had the same surgeries?

I've been on a quest to find other survivors for the past 3 months. I was thrilled to find two with close chromosomal deletions. One is a boy with a nearly identical deletion. Happily, he is also 13 - and luckily has far milder symptoms. He is walking, mainstreamed in school and very healthy.

Encouraged, I realized that where there was one there might be another. I researched every rare chromosome group I could find on the Internet. I believe that I have located four more individuals with a similar deletion.  That brings the number of documented instances of this particular chromosomal deletion to eleven!

I have no idea how old these children are or what they have been through. I've been able to get some contact information so I've reached out to them. Hopefully they will respond.

I hope I hear from the other families. I hope we can share stories and provide support for one another. I am so grateful that we are not alone anymore. Maybe we can get T-shirts or have a marathon some day.


Looking for a match to Amanda's rare chromosome deletion I've found the following resources:

http://www.rarechromo.org/html/home.asp

http://www.chromodisorder.org/CDO/

http://www.rarediseases.org/

http://www.rareshare.org/

 

When You're Done at One...

This post is lovingly dedicated to my long distance friend, Lucy... It was written in November 2005 -  a year before Danielle was born.  You never know how things will work out!

Before we got married we talked about everything – where we’d live, what we’d do, how many kids we wanted.  We had decided to wait for 5 years before starting a family.  That would give us time to get established in our careers, buy a house, and have some fun.  Five years came and went.  Every year after that we told ourselves, next year there will toys under the Christmas tree.  Next summer we’ll have a little one crawling across the sand at the beach. 

After another frustrating five years our daughter was born.  Tiny and beautiful, to us she appeared perfect in every way.  After all we’d waited so long for her – more than ten years – what go wrong now?

Well, anyone reading this knows the myriad of things that can go wrong.   Early intervention, hospital trips, therapists, and specialists you never knew existed all became regular parts of our world. Although there were toys under the Christmas tree now our daughter didn’t seem to notice or care about most of them.  She had so many sensory issues that the beach was a nightmare for her.

 Still, we wanted more children.  The doctors had told us that once I was able to conceive and carry a child full term subsequent pregnancies should be easy.  That wasn’t the case with us.  For years we suffered through miscarriage after miscarriage, always hoping that this would be the one that would last.

My 40^th birthday came and went and still we held out hope.  We loved our little girl, but we had dreamed of so many things we would do with our children and she couldn’t do any of them.  Not that we would trade her for anything!  She is the center of our world.  We’ve learned more about unconditional love than either of us knew was possible.

Slowly, I’ve let go of the dream of a “normal” family.  I was torturing myself around holidays always hoping that this would be the year she understood Santa, wanted to open her birthday presents, would actually eat the cake I’d spent hours baking and decorating.   I’ve settled into holiday traditions that work for all of us.  I still want a Christmas tree even if she never looks at it.  I still bake her big elaborate birthday cakes even if she only tastes the frosting.  However, I don’t make her open her own presents or even play with them.

Amanda, Christmas 2005

I do most of these things for myself.  I want her to have everything any other child would have even if she doesn’t seem to care. I would hate to think that someday she might look back on her life and wonder why she never had a birthday party or an Easter basket.   And I’ve let my dream babies go.  While my husband still won’t let me give away the crib, it’s disassembled in the garage.  As holidays approach I’ve stopped dreaming of Normal Rockwell moments... 

 Thank you, Kevin, for keeping that crib! I love you.

Amanda's First Surgery - Bilateral Heel Cord Lengthening

Bilateral heel cord lengthening was the first surgery Amanda had. Its sometimes called heel cord release or tenotomy. We live 1,000 miles from any family members so there was no one to help us through this emotionally difficult experience.  I was scared and felt very alone. I wasn't sure what to expect during the surgery or the recovery period afterward. The surgeons, who do this operation dozens of times each year, gave us only limited information about the process and recovery.

I tried to have a positive outlook on things that left me trembling. This is an excerpt from a  letter I wrote to our families in 2005 explaining the situation,

"Amanda is facing a tough summer.  In mid-April we brought her in for a routine check up and discovered that she has quite severe scoliosis (57 degree curvature). We decided to put her into a full body brace for the next several years. She doesn’t like the brace and we’re all having a hard time adjusting to the new routine... 

...During the same appointment we discovered that she needs to have both of her heel cords released surgically.  They are contributing to the deformity in her feet and reducing her ability to walk independently... 

Amanda’s leg surgery is scheduled for July 1.  It is a relatively uncomplicated procedure that should be completed in 1-2 hours.  It does require general anesthesia and due to some of her other issues she will need to be on oxygen afterward.  For the next 4-6 weeks she will have both legs in solid casts, unable to walk.  She will also be wearing her new glasses, her back brace and her eye patch.  Not a normal summer by any stretch of the imagination!"

2005 purple casts

Although this is a common procedure for children with special needs we had never considered surgery. Amanda had been in orthotics since she was a year old. She never owned a pair of sandals or dress shoes because they simply didn't fit over the big clunky braces. We had thought the braces would prevent her feet and legs from developing any serious problems. However, despite years in braces her Achilles tendons had tightened to the point where they were impacting her ability to balance and needed to be corrected.

The bilateral heel cord lengthening was a fairly quick procedure. In our case it wasn't combined with any other surgeries. We went into the hospital in the morning and were home by late afternoon. It took just over an hour for the surgeon to make the small incisions and cast her legs. 

She was in the recovery room in less than 2 hours. All we had to do was wait for her to wake up enough to have a few sips of clear liquid and we were on our way home. I was sort of panicked about taking her home - what if something went wrong?

To our surprise, Amanda was given "walking boots". She was up and walking the next day. We found that water shoes (the type you wear at the beach) worked better than the boots supplied by the hospital. She used a walker for support, but she wasn't a very good walker before the surgery, so that was no surprise.

Amanda is nonverbal and seems to have a high tolerance for pain so I can't comment on how painful the surgery was. We kept her on the prescribed muscle relaxer and pain medication for the first few days and then tapered her off. I do know that after a few days she gave no signs of being uncomfortable.

The casts were heavy and awkward so she couldn't walk far in them. We already owned an adult stroller and used it to get her around. I know of parents who have had to rent wheelchairs for their children while they were in casts.

When the casts came off six weeks later, she had a tiny horizontal scar on the back of each calf. It was strange to see such a small incision when she'd had casts covering her entire lower leg, from just below her knee to her toes.

2009 blue casts

At the time I was terrified. I think any time your child is going to have surgery it's frightening. Amanda has had multiple surgeries and I know now that she will come through them fine. Still, every time they wheel her away from me on a gurney I get tears in my eyes. I hate thinking about my baby, unconscious and being operated on.

Four years later Amanda had a repeat heel cord lengthening, again despite wearing ankle-foot-orthotics (AFOs) for the years between the surgeries. Amanda's feet had become deformed over the years, from walking on her navicular bones. She was supposed to have a surgery called calcaneus extension. However, the surgeons determined that her bone quality wasn't good enough for that. They estimated that the donor bone would be approximately 10X stonger than her own bone. Instead they did  a second bilateral heel cord lengthening and casting. The second time they cut through more levels of the tendon with the hope of improving her gait.

First day of school 2009 -
 if you look you can just see the cast on her left leg.

The second time around was easier than the first. Even with the modified surgery it was day surgery. We knew what to expect this time and there were no surprises. Amanda came home in casts. We were all happy to sleep in our own beds that night, knowing that in  a few days Amanda would be feeling better and walking again. In fact, later that summer we took her on a family vacation to New England. She started back to school on time that fall, despite the double casts.

If your child or family member is facing this surgery I want to put your fears to rest. Aa Amanda has had this surgery twice I can honestly say that it was not a big deal.

Preparing Your Home for a Home Health Care Provider

Preparing Your Home for a  Home Health Care Provider

When you decide to employ a home health aide there are a number of changes that you need to consider - both in your home and in your lifestyle. What will it be like having another person in your home for hours or even days at a time? If you are a private person it may feel like an invasion. On the other hand, for some folks its welcome companionship - someone they can rely on to visit  daily.

You need to make your home as safe as possible for both your family member and their caregiver. Remove objects that may be easily broken. Prevent tripping by removing small rugs, runners, electrical and phone cords from pathways. Place non-skid adhesive strips to non-carpeted stairs. Make sure that your home is well lit - especially stairs and hallways.

You may need to purchase items that you don't already have. Things you should have include, but aren't limited to:

• smoke detectors
• carbon monoxide detector
• nonslip bath rugs
• nonslip stickers or mat in the bathtub or shower
• grab bars by the toilet and in the shower/tub
• flame resistant potholders
• fire extinguisher

Having help when you have a family member with a disability can be a blessing. Another set of hands to help with care giving and household tasks can seem like a dream come true at first.

However, anyone who has employed a home care worker knows that the honeymoon period wears off.  My initial reaction was to treat the person like a member of the family while they were in our home.  I did this in part because I saw my parents struggle with the aides who cared from my mother.

My parents were very private people. They were brought up in a different era. The combination of these factors meant that they didn't want their live in aide dining with them. There was one fundamental problem with this idea- they only had one table. There was no where to sit and eat in the kitchen. Those poor women had to stand in the kitchen to eat their meals.

My parents wanted their aide to be "on call" but essentially out of sight. That meant that they were relegated to spending large parts of the day in their room or on the back deck, waiting for my parents to page them. Being a home health aide is a difficult, physically demanding job. The pay is poor and there are often no benefits. Adding social isolation must have made the job so much harder.

My mother was a little confused toward the end and some of her aides took advantage of her. While I was visiting one afternoon I saw her "tip" the aide five dollars three times for filing her nails that day. After my mom passed way small pieces of jewelry and other items were missing. I think that if my parents had been even a little more tolerant these small abuses might never have occurred.

On the other hand, I've learned that without some boundaries people may also take advantage of your good-nature. My daughter's aide is generally included in everything we do. She eats with us, hangs out in the living room and watches TV with us, etc .

In the past I've been so casual that people forgot they worked for us. Some have wanted to watch graphic crimes dramas with my daughter in the room. I didn't realize that one woman was using my laptop for online shopping until I went to several websites and the "Your Store" zip was set to her town. We've had aides show up with their children and their dogs.  One showed up before a job interview so she could use our shower!

In addition to making sure your aide knows what you want done, be clear about what NOT to do as well. While I don't want to create a feeling of distrust I do want to maintain a semblance of privacy in my home.  Some of these suggestions may make you feel ridiculous, but consider the alternatives. Be specific about any areas that are for family-only. I would rather hang a sign on my door than find someone up to their elbows in my underwear drawer. Let the person know if they are welcome to watch your TV (and what shows you would prefer they not watch), use your computer, etc. Here are a few tips based on my experience:

• If you don't want your aide to pry into your bedroom, master bathroom or office, you need to clearly post a "PRIVATE" sign on the door.
• Password protect your computers and cell phones. Lock file cabinets. Consider blocking unwanted content on your TV.
• Label dresser drawers, kitchen cabinets, etc. to prevent "I was just looking for..." If everyone knows where to find necessary items there is no reason to look elsewhere. Most people will respect your privacy, but there is always one person that wants to go through your pantry or medicine cabinet.
• If you have cherished heirlooms or valuables, move them out of sight or store them safely somewhere else. A spilled drink can accidentally ruin an antique table that looks "second hand"to an aide.

Be sure to interview any person or agency carefully before you hire them!



For more information on home safety for the elderly or individuals with special needs please go to http://www.ces.ncsu.edu/depts/fcs/pdfs/FCS-461.pdf

How to Write Instructions for your Home Health Aide

Home Health Aide Daily Care Plan & Instructions

When we first had a home health aide for my daughter the job seemed obvious to me. Not so to the various care workers who were assigned to her. Truthfully a home health care aide or companion typically has very little to do. A live-in aide can retire to his/her room and read or watch TV until you need their help. A part-time aide is in an awkward position because there isn't much to fill the time. I don't mind if the aides read, text or use their laptops - provided they meet my daughter's basic needs in a timely manner.

Do your homework when you hire an aide. It turns out that most people will only do exactly what is asked of them - no more, no less. For instance, with an elderly parent if you ask the caregiver to make a pot of coffee it is very possible that they will only make coffee on the day that you make that request. If your parent wants a pot of coffee made every morning with breakfast that needs to be specified. You need to prepare your home when you have someone working in it so they can find the things they need.

Review the instructions on equipment and procedures. Make sure that the aide has the written instructions available for any unique equipment like a lift. WATCH them perform complex tasks at least once to make sure that they are being thorough and safe. Don't trust that "showering" means the same thing to everyone. Some people may spray your family member down quickly, others may sit them in the shower and walk away for 10 minutes. Be specific about your expectations.

Review and provide instructions for all medications that the patient requires. Don't forget non-routine medications. For instance, if the person has an Epi Pen make sure the aide knows where it is and how to use it.

If you expect the person to prepare meals or snacks, make sure that they know where the ingredients are as well as what food preferences or allergies the person may have. When in doubt, provide a printed recipe including the location of all ingredients. Decide if the person will be eating with your family member and provide adequate quantities of food (obviously live-ins expect meals).

While it seemed ridiculous at first, I learned to provide a detailed list of each task that I wanted done every day.  Each task is described including the timing (after school, at dinner),  tools to be used (special cup, broom, etc.)  and the frequency (daily, weekly, etc.). I also include check boxes so the person can keep track of what has been completed each day.

The last section of my daily list includes safety instructions. Make sure that you have your address written down in the event of an emergency. You'd be amazed at how many people simply follow their GPS and have no idea where they are. If you are not going to be there at all times include your contact information on this page as well.

Here is an example of a daily care plan for a 4-hour after school shift for our daughter. Your plan may be more detailed depending on medical needs and the extent of home care tasks you expect.


Daily Home Care Plan for __________________      Date:  _____________

Tasks include, but are not limited to:

Personal Care

         Meet & get her off school bus using wheelchair

         Change clothing if wet or dirty immediately after school

         Toilet or/change Depends every 2 hours   

o   Completed  at     time _____________       time _____________   

o    Check  Depends immediately after school. Change after shower & before bed

o   Thrown wet/dirty Depend in kitchen trash can

         Provide afternoon snack (prepared in frig) Complete at time _____________   

         Assist with ambulation around house (maintain contact guard at all times)

         Assist with TV remote, computer, etc.

         Shower daily    Completed at time _____________   

         Brush hair daily after shower

         Wash hair on Wednesdays   Completed date _____________   

         Assist with feeding during meals & snacks

o   Cut food into bite sized pieces for finger feeding

o   Assist with use of spoon or fork (may need to feed her)

o   Place dirty dishes, cups and utensils in the sink

         Provide companionship & supervision at all times

     Maintain safe environment while parents are away or otherwise occupied.

Home Care

         Make bed daily    Completed at time _____________   

         Fold & put away laundry as needed (2-3 times a week)

         Dust & vacuum bedroom on Mondays (weekly)  Date _____________   

o   Use Swiffer dusters and Shark carpet sweeper

         Clean bathroom on Fridays (weekly)    Date _____________   

o   Use disinfecting wipes to wipe down toilet & bathtub

o   Lift no slip mat and place on shower chair to air dry

Safety    I can be reached at 555-555-1234

Never allow her to walk around the house alone – be with her at all times.

Watch for choking while eating and drinking.

In the event of a clonic/tonic seizure (grand mal):

1.    Ensure her safety - roll her to her side, if possible

2.    Call 911 The address here is 123 Main Street Anywhere,ST

3.    Administer medication per instructions on label (outer pocket of blue backpack)

For insights on the aide's perspective please go to http://newoldage.blogs.nytimes.com/2009/01/21/advice-from-a-home-health-aide/