Metamorphosis

Nadiya and Anastasiya- Nadiya's birthday party

          Nadiya recently turned 8 years old..  We have been managing her condition for that long now. Even before we knew something was wrong we were still managing abnormal screaming and discomfort that we now believe were spasms.  We were also realizing that milestones were not being met.  Today it seems I am coming across many families who are newly realizing their child has a condition, disorder, syndrome, or disability that they will be managing.  These are the families who are drowning.  They feel alone and they are just beginning the mourning process.  Some are even still in denial.  I see the greatest loneliness in those who are at this stage.
          So many of these families want help but are not able to reach out.  I felt that way when we were going through this.  I used to feel that if I saw children worse off than Nadiya that it would be frightening and depressing.  At the same time I felt that if we saw those doing much better than Nadiya we would be frightened and discouraged.  There is a process that a family goes through where they must eventually accept what is happening. I remember searching for similarities in other families and there were none.  No one was talking about any of this and I felt alone. I needed someone to share some hope but there was no one freely giving this valuable commodity.  We had to find hope in Nadiya and in the beginning that was so very difficult.

         There is a phenomenon that does occur with the proper conditions.  We change and adapt and eventually we even embrace what life brings us.  It does not start out like that.  I think the beginning is the most terrifying and vulnerable time.  As parents we lack education and experience in dealing with a child with a disability.  I have even seen parents with children who have mild speech and language problems struggle with the reality that their child isn't "typical" and will need support in school.  I think it is our nature to want a "normal" experience.  It is what everyone plans for and it is what our future dreams are based on.  When something happens to change that it can be devastating to have to rethink a future.  It can get better even when you think that can't be possible.  I personally have experienced this transformation in my life.  Like so many other things in life it just happens and natures takes its course. 

      For years my older, "typical" daughter, Anastasiya, has hunted in the community common space among the milkweed plants in search of Monarch caterpillars or their eggs.  Each warm day while we waited for Nadiya's bus she crossed the street and eagerly examined the leaves of the milkweed but found nothing.  Then on a hot September afternoon she excitedly announces that she had found some of these coveted creatures after almost four years of searching.  She scooped the colorful, soft, plump, and squishy caterpillars into her hands their sticky rows of feet clinging to her, confused and searching for the food she took them from.  She picked some milkweed  for them to eat and joyfully showed the bus driver what she found as Nadiya arrived.  Nadiya looked at the bugs and shook her head "no".  There have been times in the past where she saw the caterpillars, frogs, praying mantises, and other critters that her sister collected and signed, "don't like"  Just saying no wasn't too bad. 

Monarch Caterpillar

      Anastasiya put the 4 Monarch caterpillars in a special critter carrier tank with a screened lid.  Every day she made sure the bugs had plenty of milkweed plants to eat picking it fresh.  The caterpillars grew quickly consuming the entire milkweed Anastasiya fed them until they were large brightly striped creeping creatures.    
       The raising of a caterpillar is an amazing thing.  We have done this many times before but never with Monarch caterpillars.  Caterpillars are most vulnerable when they first hatch and while they are growing through their earliest phases.  This is when they are eaten by predators or fail to grow and they die.  When they get bigger it is always exciting because we know they have a better chance of making it all the way to the chrysalis stage. Many people are uncomfortable with these bugs.  They find them to be creepy and strange.  My husband isn't a great fan of them but tolerates them in the house because of Anastasiya. 

Monarch Chrysalises
 

     It fascinates me how the bugs realize they have eaten enough and they position themselves in a row on a stick to form their chrysalises or cocoons.  The caterpillars hid within the secret cloak of the chrysalises and began to change.  Slowly they went through an amazing metamorphosis completely transforming.  After a few weeks the chrysalises began to turn black and slowly reveal their secret inside.  We could see intricately marked wings folded inside.  It was clear that they would emerge soon.



The chrysalis becomes transparent

      

       It was September making these Monarch caterpillars the fourth generation of the season.  Genetically these bugs would be different than the three generations that had hatched through the summer before them.  The first generations are breeders.  They go through the typical caterpillar to butterfly life cycle creating the next generation.  Generation four is different.  Genetically their makeup is a little unusual.  They will be migratory and fly a long distance to Mexico or California or even the Caribbean.  They will live for many months instead of weeks surviving the harsh winter in a warm climate.  This will ensure the future population of Monarch butterflies. 

The newly hatched Monarchs

      Very soon the chrysalises began to hatch.  A wet newborn butterfly emerged from each.  They clung individually to their broken chrysalises and dried their wet and wrinkled wings out for a few hours.  As their wings were drying the butterflies slowly pumped them filling them with blood and smoothing out the wrinkles from being folded in the chrysalis.  It was interesting to watch.  Once they were dry and ready to fly Anastasiya and her friend set them free.  At first they clung to her almost afraid to leave the comfort of her care but eventually they flew away.  We imagine they began their long fascinating migration to Mexico just knowing what to do, following their destiny. 
      

Anastasiya releases a newly hatched Monarch

       I couldn't help but reflect as I witnessed this process  that our family had undergone a transformation of our own.  We had survived and we became stronger because of it.  There comes a moment when life isn't all about the difficult but it can become more about the good things.  We have our frustrating moments and we have our battles that we constantly must fight but thorough it all we have found our place in the world finally.  We can see the joy in Nadiya's small triumphs.  We can find the comfort and peace of being able to manage her seizures with the Ketogenic diet.  We embrace the mission we are called to as her voice.  We try to help others who are in our position.  We can hope and rise above despair.  Where once we carried a huge heaviness, now we can fly away.  I saw this connection with the hatching of these Monarchs.  As parents of special needs children it can be easy to feel defeated.  We are often tired but there is an adapting that takes place.  We become better suited to manage this life that we did not choose for our families.  Sometimes it can even feel beautiful.  There is hope. 

        The symbol of a butterfly is one that means a new life emerging from the old or an incredible transformation.  That is what happens when a family has a child with special needs.  The family must transform their ideas of what their perfect family will be to a reality of what they are.  They must grieve their loss and accept their destiny.  They must find a way to manage their challenges and move forward.  They must find their place in the world and from their develop hope.  This metamorphosis continues through our lives.  How we emotionally nourish and care for our family determines how beautiful our butterfly will be. 

Despite her apparent dislike for bugs Nadiya is fascinated
by the newly hatched Monarchs

   

Accessibility: A Strategy and an Art

Nadiya's new wheelchair is much more
manageable than those we’ve had before.

.

It is the nature of living things to get from point A to point B. Even a flower will slowly climb up its stem in search of the sun’s rays. Along the way there are the typical obstacles that must be either avoided or overcome like the traffic accident that makes you late for work or the congested lobby that fills an elevator with no room left for you to squeeze in. We are always on the move searching to have our needs met and to meet the needs of others. This is the busy world we live in and most have become a productive part of it.

Now imagine if every journey was speckled with barriers forcing you to navigate around it or surrender. How functional would your life be? Would you accomplish much? This is what it can be like for a disabled person when they venture out into the world. There are challenges at every corner, some hidden and some in full view. Even the most confident and optimistic person can find themselves frustrated and dispirited.

I believe a significant amount of careless people must take ownership in causing many of these difficulties. There are a lot of selfish, oblivious people stumbling from point A to point B. Unfortunately they cross my path more often than I like. Nadiya is not able to pilot herself on any of these journeys so she relies on a competent adult to do this for her. I am often that competent adult. It gives me the opportunity to see things through her eyes. I can’t help but imagine her sadness and frustration as she passes through a world not designed to include her. What must she feel? I feel frustrated and isolated. I feel angry. Allow me to take you on an expedition in Nadiya’s wheelchair. When the ride is over I want you to ask yourself what do youfeel?

Along for the Ride

Nadiya's bus stop

It is early morning and time for school. We live on a dead end street without ample room to turn around on. The school bus is not permitted to drive to the end of our street. Once a driver backed down to pick Nadiya up and they got in trouble with their superiors. Most disabled children have door to door transportation, that is, unless they live on a dead end street. We have to walk to where the street forks. That is where Nadiya’s bus stop is. This is fine when the weather is nice but in

the pouring rain or freezing cold this isn’t fun.



To make matters worse there seems to be an extraordinary amount of people with driver’s licenses who do not remember the school bus laws they were tested on at the Department of Motor Vehicles. They fly past the bus while Nadiya is on the lift. I have chased some, confronted others, and the bus personnel have taken down license plate numbers to report them. How is it that there are people who would do this especially while a child is on a wheelchair lift?

A wet branch obstructs our path to the bus stop

The bus stop obstacles do not end with the drivers failing to stop for the flashing light. I frequently have difficulties just getting to the bus stop. There are the icy or snowy days where at least one homeowner does not shovel their part of the walk. Luckily we have a neighbor with a snow blower who will clear the snow but there isn’t much he can do about ice. Regularly there are tree branches blocking the sidewalk so that they hit me in the face. This is particularly fun when the branches are wet. On several occasions

A different day, different person no passage

No passage

people have blocked the sidewalk with their vehicles. This makes it impossible to pass sometimes without riding in the grass, off a curb, or into the street. Nadiya’s old wheelchair which was a Quickie Zippie would dangerously tip forward or sideways whenever we hit an uneven sidewalk crack so these off road adventures were particularly treacherous. It is also very frustrating that it is always the same people. I make it a practice to confront people when they do this so that they are aware of what they have done, especially the repeat offenders. This is most affective if Nadiya is there sitting inconvenienced in her chair. The visual usually hits home better than the words I am saying to them.

Off to the Community

This truck blocks the access to the sidewalk

for wheelchairs just to run in for coffee.

Assuming you get out of the neighborhood there is an abundance of other obstacles to tackle in the community. Handicap parking is probably my most frustrating to date. I have seen a carload of business men in suits with no apparent physical impairments get out of a car with a handicap placard. I can only assume it belongs to a family member, such as an aging mother, and they want premium parking for lunch. I have seen overweight people take a handicap spot when in many cases walking is healthier for them. I have always felt that handicap parking should be reserved for people with equipment such as a wheelchair, walker, cane, crutches, oxygen, cast or boot. In addition those with severe lung diseases and disorders that limit their ability to walk distances should have access. Anyone else can use the walk. There is no worse parking situation than having to load Nadiya in her chair from behind my van in the middle of traffic. Not only do I have to carry her there but cars speed recklessly by me endangering both of us. To make matters worse the handicap spots are time and again taken by those who don’t need them or those who don’t even have a placard. I have even seen people park across handicap crosswalks blocking the graduated curb access for wheelchairs and I have seen motorcycles park in the handicap accessibility isle. If law enforcement hired some meter maid or security type positions to ticket these offenders who park illegally they would make a great deal of money for the state.

Nadiya's soaked chair after traveling

back to the car on a clinic day

If the weather is bad the parking problem is usually worse. You will likely have even more people parking illegally because they don’t want to get wet. Meanwhile Nadiya is soaked as I am trying to get her in her chair because there is no hood or awning on the wheelchair. Holding an umbrella over her while pushing the chair is often a bad circus act resulting in both of us getting soaked. Besides the rain beware if it snowed recently; you will have even greater trouble. People who work in snow removal seem to think the handicap spots are a great place to dump the mountains of snow. If they have the sense not to cover the actually parking spot they usually cover the crosswalk area that accesses the wheelchair bound person with anything like the street, shops, and the rest of the parking lot. This forces wheelchairs into traffic which is never safe. Sometimes if the lot has not been graded properly your handicap parking may have an aquatic feature where it is actually under water. That’s fun. Don’t wear good shoes because you are likely to destroy them loading and unloading the disabled person and their chair.

Managing equipment in public can be difficult. All of it has to be unloaded and depending on your vehicle and the size and function of the Durable Medical Equipment (DME) assembly of some sort is usually required. If you are in a questionable location such as a mall during the holidays when assaults tend to occur, you are vulnerable. I like to think that if someone was to accost me that the wheelchair and or its unassembled parts would serve as a weapon of self defense but who knows how that would end. Nadiya had a wheelchair for awhile that used to randomly lose its wheel. This would occur in the parking lot as I unloaded it. Most of the times it was raining as I had to chase the rolling wheel as it escaped down the parking lot.

The next thing you will have to navigate is the accessibility of the place you are entering. A private residence will be challenging a public place is supposed to be accessible but sometimes their idea of accessible and yours does not mesh. You may have access to an elevator but it may not go up to all 16 floors. You may have to switch elevators because you can’t take a fight of steps that connect two different parts of a building. The automatic handicap doors may or may not work. In some places I find tossing a coin to see if it will work is pretty accurate. The isles in stores are usually very tight and some impassable. If you must use the restroom you will find that everyone uses the handicapped stall. This is ok, really. What isn’t ok is when a family of 4 is using it while a disabled person is waiting for the restroom. If you are in line and a disabled person is in line they get the handicapped stall when it is next available. It will take them 3 times as long to use the restroom with 10 times the difficulty. Give them a break. They are entitled to it and you can use any stall even with your kids. If you must put your entire family in the handicap stall wait until the disabled person uses it first.

Changing tables are a challenge that most don’t realize until they are experiencing it. Children who are disabled are often in diapers even if they are potty trained. Nadiya is pretty much potty trained but if she is not taken to a toilet when she needs it and it is not accessible she will have an accident. This is why she wears diapers. In public it is impossible for her to use the toilet since she is so small and has physical disabilities. She has a small modified potty at home that I am unable to bring with me. Children with moderate to severe Cerebral Palsy or other profound physical disabilities need a changing table. The infant changing tables do not support the height and weight of a 6 year old. That parent is forced to lay their child down on the floor somewhere to change them or go to a large enough dressing room or to their car to change their child. We were on vacation in Disney and where their restrooms accommodated children like Nadiya with their large metal changing tables the public did not. Many people were impatient. Some thought I wanted a stall and was cutting through the line. Twice women placed their infants at the bottom of the table below Nadiya’s feet to change in tandem with me. I had to tell them Nadiya has Cerebral Palsy and that she would kick their infant in the head if they were that close. I told them I was moving as fast as I could and please be patient. Who wants to have to say this once let alone twice?

These examples only highlight a small portion of what happens when a disabled person goes out into the world. I asked you to assess how you feel after reading this. Maybe you are frustrated and find these scenarios upsetting. Knowing what you do now please be patient and educate others who are being insensitive. I said I wondered what Nadiya felt. Honestly I think the frustration is all mine. She knows mommy will take care of her no matter what and that I will be her voice. Nadiya loves being included in the world. She is fascinated by all that we take for granted. That is a reason right there for me to keep fighting for her rights and for her accessibility.

There are plenty of wonderfully accessible places in the world too. I will highlight those in a future article. They are the model for the rest of the world to emulate. I have great hope that someday all people will have access and their mobility needs will be met much easier than they are now. Until then I will continue clearing the way for Nadiya.

The Balancing Act: Not Always a Game of Equality

Most families with more than one child struggle to maintain a balance of attention, love, and material possessions between their children.  They search for the best way to keep things fair and just.  Sometimes this is very difficult.  When one of the children has special needs the task is even more challenging.  To date I believe I struggle most with balancing the needs of both my children.  Visions of scales come to mind with me in the middle trying in vain to balance the heavy load without spilling or shorting one side.

Without a doubt Nadiya’s needs are greater than any typical, healthy child.  She requires assistance for every action and detail in her life from placing a toy on her tray so that she can play to feeding, dressing, and toileting her.  In addition she requires many therapies and specialty doctor visits.  Her health is complicated by her low tone and her seizure disorder so she is frequently sick.  When she is sick the illness becomes much more complicated than any of her sister’s illnesses.

This does not excuse me from my obligations to Anastasiya. She needs to have activities like her dance and musical theater classes. She must have her education monitored and her educational needs met. Socially I must make sure that Anastasiya has typical friends her age just as I make sure Nadiya is included. It is easy to neglect one child over the other especially when one has much greater needs.

Anastasiya assists in therapy circa summer 2006

I still struggle for the answer to this dilemma. Early on when Anastasiya was small we did art projects when Nadiya was napping. It was a creative outlet that was reserved especially for Anastasiya. During those years with Early Intervention we allowed Anastasiya to participate in Nadiya’s therapies. Sometimes we even had her assist. We also made sure Anastasiya had the therapy and support she needed early on. 

There are a lot of services available for siblings of disabled children. Many Early Intervention programs provide play therapy for the siblings. A social worker interacts one on one with the sibling in a play environment in the family’s home. This benefited Anastasiya a great deal. Depending upon your insurance coverage private therapy is often covered for children in this circumstance. Be sure to research the therapists. Make sure they work with children and have experience with play therapy. Make sure that they will work with you as well to provide techniques and strategies for helping your child cope with their sibling’s disabilities. In addition, you can also look into what your child’s school will provide as far as support. Will the guidance counselor work with your child?  Does the school have a support group for children dealing with death, divorce, or illness in the family? Churches sometimes provide this same type of support; check with your religious organization. There are also sibshops offered in the community where siblings of disabled children get together in a structured environment and talk about the good and bad aspects of having a sibling with special needs. They are able to meet other siblings like themselves and participate in fun activities as well. This can be a great support.

 We do these things for Anastasiya but there are still times where I feel I am being dragged in every direction. I feel insecure about how well I am meeting the needs of both children. Then a sense of calm comes over me and I can clearly see the reality of it all.

My situation is not that of a normal family. No matter what I do to construct a "normal” set and enact a "normal" script there will be deviation. There must be. What is good for one is not necessarily good for all. My grandmother was always so concerned about my sister and I having equal parts.  Whether it was a toy, a snack, or playtime with her it was equal. What she did for one she did for the other. The older we got the more challenging this became because what my sister got I didn’t necessarily want! I know her intentions were good but we were not always treated as  individuals because of this but more like an equal team. This didn’t always work for my sister and I and it certainly does not work for Anastasiya and Nadiya.

I am learning that with a unique and challenging situation comes the need for out of the box creative thinking. Problems are not always solved by traditional means and ideas. Case in point, two weeks ago my husband, David, and I found ourselves in a quandary. We had set up a conference with Anastasiya’s team of teachers to discuss some concerns with grades. David had taken the day to work at home, Nadiya would still be in school, and my friend would be taking Anastasiya during the after school conference time. 

This was a great plan…a "normal" plan. Well as our life goes the situation did not stay “normal”. Nadiya got pneumonia which complicated every aspect of my week. Her care was intense during this illness. Still my friend felt she could handle a sick Nadiya as well as the carpool kids. Then the day before the conference her younger son developed a high fever and was seen by a doctor. He was diagnosed with bronchitis which he immediately started treatment for. Now what were we going to do? To reschedule the conference would have been difficult but it seemed we had no choice. I was frustrated that Anastasiya’s needs would suffer yet again. It was then that I realized there are often many choices in life. They just may not be very conventional but they can work.

My friend supervising the sick van and the well van

My friend and I came up with an unusual solution. We each have a van. Why not have a sick van and a well van? The sick kids with similar illnesses that they were being treated for would be in one van. The older, well siblings would be in the well van and would be germ free. My friend would be in the middle supervising all four kids. Where now she  seemed represent the scale with the person balancing in the center, it worked. Maybe sometimes things are just that way. Everyone’s needs were met that day. My friend had a great sense of humor about it  creating signs for the van labeling them sick and well. She even brought a lawn chair to sit comfortable in the center.

Dressing them in the same outfit doesn't mean they are the same.

There will be times when I do not feel over extended and there is a natural harmony or ebb and flow. Then there will be difficult times where balance seems like a foul word. Children are different. As long as you are meeting their needs reasonably as they come everything will be fine.  There won’t be an equality that you can measure. Anastasiya will have her dance, musical theater, and ice skating. She will share music with me and the love of literature and writing. I will encourage her education and provide a structured and secure life for her as best I can. Nadiya will have her daily cares met. I will oversee her healthcare and her therapy. She will get all of the services she in entitled to under the law and I will protect her from discrimination and cruelty. Both children will get their basic needs met. They will have family time and friend time. They will both be loved by two parents who work very hard for them but they will not be the same. Sometimes Anastasiya may need to be disciplined where Nadiya needs to be comforted. Anastasiya may be encouraged to participate in an adventure outside her comfort zone where Nadiya may need to be sheltered. Nadiya may have to be content listening while Anastasiya and I sing in harmony. Both children may have to wait to have their needs met while I meet my own or those of my husband. It is an impromptu dance without choreography to guide us. As long as I am addressing the needs of both of my children in ways uniquely suited to them, I am doing what is best for them. Their needs will change and my methods will too. I must always open my mind to the unconventional, alternative solutions because sometimes those are the best choice for uncertain and irregular situations.

The Letter I Never Sent: How to Write a Great Advocacy Letter

          When I look back to the early moments with Nadiya, before I was an advocate I remember almost drowning.   I didn’t know how to separate my sorrow and disappointment from my obligation to stand up for my children’s rights.  It was just as crippling to me as the neurological dysfunction was to Nadiya.  With both of us so impaired there really wasn’t much hope. 

          There was certainly a defining moment when I gathered the courage to enroll Anastasiya in a dance class.  Though Anastasiya was bright and capable her anxiety was a roadblock that would take years to overcome.  I did the right thing.  Anastasiya needed a shot at something normal.  If I hadn’t tried this at three years of age I certainly would have had to do it at some point so in a way I got it over with early on.  In doing so a spark that was left in me ignited.  The passionate advocate in me awoke.

          It is certainly understandable how grief and uncertainty can overwhelm a person when they are in a situation where they have a profoundly disabled child.  There needs to be a moment when that grief transfers to something else, something productive.  I tried for a long time but nothing seemed obtainable.  I felt hopeless.  When I finally signed Anastasiya up for dance class and we were not received with understanding or tolerance I was beside myself with anger and hurt.  I didn’t have the skill to transfer that into anything productive yet; I was just learning.  I needed help and I was smart enough to ask for it.

          My friend Stacy had been a former special educator and had worked in my classroom with me when I was a middle school teacher.  She was an advocate and she had passion and strength in all she did.  I looked up to her and trusted her.  Stacy had helped me advocate for early intervention services for Nadiya and helped me face the long road ahead of me.  She offered support whenever Nadiya was in the hospital and she taught me how to write an appropriate advocacy letter. 

          This first letter Stacy wrote in my voice using my story.  She showed me how to be concise and state the facts.  She demonstrated how to use powerful language to support my point.  Even with my background as an English teacher I had never had to do anything like this.  The letter follows and is truly amazing: 

*Names have been changed.

YWCA of _______County

                                                                  

To Whom It May Concern:

         

          My husband and I are the parents of two beautiful girls, ages three and two. While we recognize our children as blessings, we are sad to share that our two-year-old is severely disabled with a seizure disorder and complicated neurological problems.  In the wake of multiple seizures that require medical intervention, and on-going therapy and doctors’ appointments, life in our house is rarely “normal”, and this has taken a toll on our oldest daughter, Anastasiya, in spite of our efforts to provide her with therapy and normality.

In the search for some normal, healthy interaction for Anastasiya, and because she had expressed an interest in dancing, I investigated opportunities for young children.  After careful consideration, I chose the YWCA of _______County: The _____School of Dance.  The YWCA’s claims to empower women and rise up above discrimination were encouraging to me since I had not ventured too far into public, alone or with help, for fear of a crisis occurring. Since our younger child’s diagnosis, we’ve rarely had the opportunity, not to mention the time, to go anywhere other than to doctors, therapists and hospitals. I was beginning to recognize the impact this was having on Anastasiya, and wanted to provide her with opportunities to socialize with other children, and interact with other adults.  The YWCA appeared to be the best choice for our family, and seemed to suit our special needs.

          Anastasiya was the second youngest child in the class.  She was fearful and cried, as did the youngest child.  The youngest child’s mother and I assisted our children, and helped to transition them; this was permitted by the instructor.  At the time, I had someone to assist me each session with my disabled child who at the time was only 18 months at the time.  I was then able to assist with my older child’s fear and uncertainty.  My daughter improved each week. 

Overall, the class was pleasant, except for the only boy in the class.  His behavior was disruptive and inappropriate.  He screamed and ran in and out of the lesson, distracting everyone.  He aggressively put his hands on other children, including mine, which increased my daughter’s anxiety.  I spoke to Susan*, the dance instructor, about this child’s behavior, and addressed specifically the disruptions and the aggressive behavior toward my child.  She made an obvious attempt to separate this boy from my daughter, which I appreciated. 

There were several occasions during the course when parents corrected their children during class, some more subtly than others.  On one occasion, I had to correct my daughter.  When I did, which I consider to be my responsibility as a parent, and which appeared to be the acceptable protocol for this teacher in light of the many times that many parents corrected their children, Susan reprimanded me openly, in front of the rest of the class and the other parents.  I was humiliated, and felt her response was unprofessional and inappropriate.  Even if she didn’t want me to step in, she should not have addressed me in front of everyone.  It was disrespectful, and it was not how I would have spoken to her as an adult.  If she had quietly asked me to stay for a few minutes after class, and she talked to me about what she was thinking and feeling when I corrected Anastasiya, it would have been a different story.

To add insult to injury, to my knowledge, Susan had not spoken to the parent of the disruptive boy about his behavior, which was unsafe and disruptive.  His behavior continued to get worse in the weeks since I spoke to her about intervening.  And, if Susan had spoken to this parent, she had not humiliated and embarrassed her in front of everyone.  I expect to be treated as respectfully as this parent was treated.

I chose to respect Susan’s classroom and her boundaries, and did not correct my child’s behavior during class again.  And, I swallowed my pride and continued to bring Anastasiya to class, which she enjoyed and talked about all of the time.  The boy had a severe tantrum during the fifth session, and his mother left with him, not returning for the final class.  The dynamics of the final class were completely different, and it was obvious that these girls had missed out quite a bit, and had not had an optimal experience.  Yet, the little boy had been given a fair chance to participate, and both he and his mother were publicly treated with dignity throughout the experience.

Despite all of this, my daughter wanted to take dance again in the summer session.  I chose Susan again as the instructor because my child was comfortable with her and liked her.  This was more important than my pride.

The session was to be held at the same location, but the class was cancelled, so we had to go to the a different location.  This was a change for my daughter, and historically, as a result of the trauma she has faced in the wake of her sister’s seizure disorder, she does not handle change well. 

I was not able to get help for my disabled child the first day of class, so I had both children on my own.  As I drove to the first class with anxiety and insecurity, I found comfort in the YWCA’s claim to empower women and rise above discrimination. 

Upon arrival, I had to inquire about handicap accessibility for my younger child’s stroller.  The parents with whom I spoke at first were trying to discourage my use of the stroller, insisting that “there wasn’t much room”.  When I explained that my child was severely disabled, I was then asked by a parent if I could carry her!  My youngest daughter is not able to stand or sit independently, even though she is almost two; the seizure disorder has caused severe developmental delays.  Carrying her is not an option, especially if I am by myself.  The parent sensed my frustration as I explained why she needed her stroller, and that she wasn’t quite ready for a wheelchair, and finally offered to help by pointing me in the right direction. 

Once in the building, the parents directed me to put my disabled child and her stroller in a corner of the waiting room, forcing me to choose between overseeing my oldest daughter’s transition, or keeping an eye on my youngest daughter, who is completely helpless and medically fragile. 

To make a difficult situation worse, Susan was unable to teach the class due to a family emergency, and she sent her daughter in her place to teach the class.  Her daughter, in my opinion as a former teacher, had poor command over the class.  Anastasiya, facing yet another major change, not to mention a change for which I was not able to prepare her, began to cry.  She verbalized fear of the boy from the winter session being there.  I verbally consoled my child the best I could without neglecting my younger disabled child, who was required to sit in a corner in a waiting room. 

After excessive pressure to abandon the stroller and hold my youngest daughter, I gave in, trying to manage an impossible situation, physically, socially, and emotionally. The substitute teacher was ill equipped to facilitate such an interaction, and I was overwhelmed.  I carried my youngest child to the edge of the studio where I could at least see my tearful three-year-old.  Because it was nearly impossible to manage holding my youngest child, and assist my oldest child, I finally had to make my three-year-old sit against the wall and watch because she was still crying.

At no point did a parent offer help, nor did the teacher offer suggestions or assistance.  In fact, one parent asked if Anastasiya had ever taken dance before, and asked how old she was, with obvious concern about the disruption caused by my child’s fear and anxiety on the first day of class.  I apologized, explained that she was afraid and why, and stated that, if I took her home, I was teaching her that she could behave inappropriately and get her way.  Then the woman who offered help in the beginning, but insisted that I put my child in a corner, asked if my three-year-old would be crying the whole time.  It had only been about ten minutes, and, though she was crying, she followed directions for the time she was on the floor.  The parent then informed me that her child wasn’t getting what she needed from the class because my daughter was crying.  These children were three and four years old!  I was appalled, and my lack of experience did not allow me to reply to this horribly intolerant, uncompassionate woman.  I collected my children and left. 

A few hours later, the director of the _________ School of Dance called to say that Susan’s daughter had called Susan, and they discussed my child.  They felt she was too young to participate in dance, and said she should not come back until she was older.  It is my belief, judging from their attitude toward me, that the intolerant parents complained.  This wasn’t left up to me as her mother, knowing that the experience dancing would ultimately be therapeutic for her.  I was left feeling helpless, again!  I was being told what I “should” do, and it was in direct conflict with what I knew to be right for my child.

I have several concerns, which I hope appear obvious after you’ve read the narrative above.  First of all, I feel that Susan rated my child’s fearfulness as a less tolerable behavior than the deliberately disruptive, and physically aggressive, behavior of the boy in her winter session.  It isn’t that I don’t think she addressed it, as I have no way to know for sure, but she did appear to be more patient and tolerant of his behavior. It is a normal behavior for a three-year-old to be fearful and cry when beginning an activity like dance, or camp, or preschool.  It also concerns me that there was no offer of assistance, no suggestions, and no option to try “one more session”, perhaps with childcare for my disabled child so I could be free to help my oldest child.  In addition, it concerns me that there was never any stipulation that, if a three-year-old should cry, they may be dismissed from the class.  The class was not described as a hard-core training facility for future ballerinas; it was a beginning dance class for preschoolers.  Finally, it troubles me that such an intolerant place is associated with the YWCA.  My concern is that other parents, struggling to function in normal society in spite of the abnormal and difficult conditions that life sometimes places in their laps, will choose this class with the hope of support and tolerance, only to have a terribly unpleasant experience.  At the time, I found this devastating, but now I realize how important it is to advocate for families like mine, and make you aware of the type of group that is poorly, and in my opinion, falsely representing your reputable organization. 

I’ve enclosed a copy of an article I found about a dance teacher who I would expect to find at a place like the YWCA.  Her approach is what I’d like to find for my youngest daughter; her attitude is what I expect from any teacher for both of my daughters.  I hope you find the article as interesting as I did.  It restored my hope.

This winter I will seek a more accommodating dance studio for my child, and I will not recommend the _________ School of Dance to anyone.  In fact, I will discourage it and question recommending the YWCA because of them.  Thank you for your time and attention in this important matter.  If you have any questions about my concerns, please feel free to contact me at home.

                                                                               Sincerely,

                                                                                            Jill 

                                        

         I never sent this letter.  I still am not sure why because I have written and sent so many since.  Maybe I just wasn’t ready yet.  Maybe I needed to have more confidence.  I don’t really know.  I hope that this will help someone who is just starting out and drowning like I was.  Maybe the letter will inspire you to write your own and send it.

          I can say that we found an amazing studio near us with an incredible director.  Anastasiya has danced with them for almost five years now.  The director has even attempted to start a special needs ballet class, inspired by Nadiya.  I am glad I gave dance and humanity another chance.

         I have found that letter writing can be an empowering tool.  Some of my letters have moved mountains and others has only created awareness but all of them have given me a way to try to correct what is broken or wrong in the world of a disabled child.  For that a letter is worth sending. 

          A letter is an effective way to unlock some of the feelings you may have.  It is concrete and it can be revisited and revised often until you are ready to let go of it and make it public.  I held on to this letter for almost years before I made it public.  It was always there, stored away and unfinished.  It was like a canvas covered and incomplete, a symphony in progress but somewhat forgotten. 

          When I reflect back I know the letter was more than that.  I am not sure why I never sent it.  Maybe I was a little insecure and intimidated.  Maybe I felt my voice was not strong enough to back up the words on the paper.  I know it was the beginning.  It established the first words of Nadiya’s voice. 

Letter Writing As a Tool

·        First you must decide who your audience will be.  There will likely be several.  You will need to include who you are in conflict with and their superiors or regulatory agency.  If there is a third party involved as well they should be included.  My letter should have gone to the dance instructor, the local chapter of the YWCA and supervisors at the next level at the YWCA which would have likely been on the state level.  In some cases the higher ups may even be national as in the case of an insurance company or durable medical equipment company.  By including these recipients you are confronting the person with whom you are in conflict with and you are holding them accountable to their superiors.

·        Be sure to state your circumstances and complaint concisely.  In my example it was appropriate to provide background and a narrative as to what occurred.  The circumstance may not warrant such detailed background.  If it is not relevant then stick to the circumstance in question.  Make sure to document facts as they occurred and support your accusations.  This makes for a stronger letter.  You can include violations to the law if they occurred or site specific discrimination or negligence.  These facts are important.

·        Always use appropriate language and grammar.  Unfortunately if you appear uneducated your credibility lessons and the offender will have leverage in arguing their justification for their behavior.  Have a friend proof read.  I always have someone hear my letters before I send them.   I use spell check and I check my grammar.  I never use abusive language or slang terms and I stress the conflict in clear and concise language.  If you take what you are saying seriously your audience will too.

·        Be prepared for a conversation by phone as follow up to a letter.  Sometimes this happens and sometimes it doesn’t.  Be prepared either way.  I once had a vendor for an equipment company behave in an inappropriate and unacceptable manner.  We were in a hospital setting in front of therapists and other pediatric patients.  The vendor’s behavior was so offensive and insensitive that I sent the letter to the hospital, his company, the company who contracted his company, and our insurance company.  The appropriate hospital official contacted me and was apologetic.  Though they did not tell me what course of action they would be taking I am confident that action was taken on their part.  The insurance company sent me a letter in response notifying me that they were investigating the incident but I would not be privileged to the outcome of their investigation.  The contractor company actually phoned me.  The individual with whom I spoke seemed to be searching for information as to how I interacted with the accused employee from the contracted company.  I reminded this person that though I was appropriate during the exchange even if I had not been it gave no license for the unacceptable things that were said to me and my husband by this employee.  I stressed the inappropriateness of his behavior.  It has been my experience that when people are in trouble and being held accountable for their actions they often try to blame others and turn the accountability around so that your behavior is in question.  This is why I never curse at individuals when I am angry and I stay professional.  That does not mean that I am not firm as I call someone to task.  In fact, it is usually unpleasant.  I make it very difficult for the violator to make the incident my fault.  This can take practice and great exercise in self control.  In the end the only recipient of my letter whom I did not hear from was the company actually employing the vendor with whom I complained about.  This was disappointing but I am quite sure that at the very least the incident was investigated by several parties and the individual accused was made very uncomfortable if not accountable.  I gained closure, some accountability, and the satisfaction of refusing future service from this employed individual.  That was enough.

I would also recommend that you send letters of praise and appreciation as well.  These are just as important because there are many individuals in our lives who are getting it right and working hard at their jobs.  Part of holding the incompetent people accountable is recognizing and praising the highly effective individuals who take pride in their work.  This encourages higher standards and expectations.

          Don’t be afraid to send the letter when a situation warrants it.  That is the first step.  Then when you are ready the next step is to send it.  Maybe your letter will move mountains.

Anastasiya's ballet recital picture spring 2011