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.
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.
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.
_Copyright+Release+CD+of+Individual.JPG) |
| Anastasiya's ballet recital picture spring 2011 |
No comments:
Post a Comment