The Four Walls of My Freedom Read online

  The case of severe disability in the family is worth examining because it is the most extreme of dependency experiences in a community context. Eva Kittay writes: “The birth of a child with very significant impairments may test the limit of the commitment that I take to be the very condition for the possibility of mothering…in my own understanding this felt conviction is so fundamental that it serves as a benchmark. The extent to which a woman cannot realize it (in the idiom appropriate to her own culture) because of adverse social, political or economic conditions, to that extent she faces an injustice. I take it then that the requirement to be able to mother, that is, to realize the condition for the possibility to mother, constitutes one of the “circumstances of justice.”29 Here, Kittay could be referring to the African mother with her baby on the poster, but she could just as easily be referring to mothers like me.

  On December 26, 1999, a ten-year-old boy with severe cerebral palsy was brought to the Emergency room of a Delaware hospital and abandoned there by his mother. What made this story so newsworthy was the identity of his parents: Richard Kelso was a very wealthy local businessman and his wife, Dawn, was a known advocate for handicapped children. Mrs. Kelso wheeled her son Steven into the ER along with a bag of toys and a note saying the couple could no longer cope. Police were called, and the parents were arrested and put in jail for the night. Mr. Kelso was sixty-two and his wife forty-five at the time of the incident. They had been sleeping in shifts with no nursing assistance over the Christmas holidays.30 The pure desperation of this couple, their failed efforts at “normalization,” and their exhaustion are all miserably palpable in this sad story. The fact that they were arrested and jailed for attempting to relinquish responsibility for their son suggests that the state had coerced this couple into performing twenty-four-hour duties that would be likened to slavery in any other setting. By all accounts, this couple loved their son. But love is sometimes not enough to provide for survival in cases of “do or die” for persons who are entirely dependent. It seems probable that Mrs. Kelso made efforts in the lifetime of her son to be a good mother to him. Her actions on December 26, 1999, suggest that she was defeated by Steven’s needs. His needs were so demanding that no one person or even two persons could meet them without an army of helpers. I know something about what she must have felt that night.

  On March 15, 2004, Nicholas received his wish from the Sunshine Foundation. He wanted to meet Stone Cold Steve Austin from the World Wrestling Entertainment, and after all he’d been through, I felt he should have anything that made him happy. I have already described Nicholas’ experience on this trip, but I kept secret from the children the awful events that followed for Jim and me. Nicholas, Natalie, a young lad to help with lifting and I arrived in New Jersey at our hotel and I immediately laid Nick down in his bed to rest. He was on oral morphine at the time, but the pain was barely controlled. Many nights at home in Ottawa, Nick would wake screaming and I would rifle through the medicine cupboard looking for something I hadn’t already given for the pain. If extra Tylenol or Ibuprofen didn’t help, I would call the hospital. The anaesthesiologist on call is the physician responsible for narcotic medicines, so I would have the doctor in that position paged. I would hold the phone up to listen to Nick’s screams, explain what I’d already given and ask what more I could safely dispense. Too much morphine can stop a person breathing, so getting the correct dosage was crucial. The problem was, I often gave the maximum allowable amount and my boy was still in desperate straits. The on-call doctors were not always helpful. Some anaesthetists do not “do” pain, only operating-room anaesthesia. Some would quickly give up trying to understand Nick’s complex history and just tell me to bring him to Emergency — something I could not do several times a week. Twice, the on-call physicians hung up on me.

  I was worried about how I would manage Nick’s pain in New Jersey. I knew he would be terribly excited meeting his hero and that excitement was a dangerous trigger for pain. But I also knew that Nicholas said making the trip was the best thing that had EVER happened to him. I had packed every bit of pain medicine from the cupboard at home and I intended to use whatever was necessary to keep Nicholas comfortable during the twenty-four hours we were travelling. During the day, I gave him his regular doses of morphine and after the show and meeting with “Mr. Stone Cold,” I gave him an extra half-dose of morphine. I knew he’d been terribly excited and I was afraid of the spasm that I was sure would ensue in the night. I lay awake beside him most of the night, repositioning him for comfort and watching his breathing carefully. “Breathe, Nicholas. Breathe…” I whispered.

  The extra morphine worked and Nicholas made it through the night and onto the plane the next day. We were bound for Montreal and a planned admission to the Children’s Hospital there to seek solutions to Nick’s pain. The first few days of his stay in Montreal were, in the words of his nurse “a hurricane of pain.” A constant infusion of morphine was started and oral ketamine (a form of anaesthetic) was added for the nerve pain in Nick’s foot. The high levels of medication slowed his digestion and he became nauseated. So much dry heaving caused a bleed in his esophagus, and strong anatacids were added to the mix. I remember standing at the pay telephone in the gloomy hallway, relating the desperate events to our rehabilitation nurse in Ottawa. I described the visit to New Jersey, my worries about taking Nicholas home in such distress, and especially my worry about failing him as a mother. I thought that perhaps he should be placed in a long-term-care hospital. Surely they would know how to manage his pain better than me? Surely they would have shiftworkers who would be less exhausted and desperate than me? Perhaps, I imagined, people who knew me would realize the unthinkable, stark gravity of this request for a hospital placement for Nicholas and funds would be found to keep him at home. I was on my knees, begging for help.

  Finally, we boarded an ambulance taking us home to our local children’s hospital in Ottawa. I carried the Montreal doctors’ notes in my lap, recommending a sleep study to ensure breathing safety in the event of necessary morphine increases. I was happy to be going home and I felt that the pain team in Montreal had witnessed enough of pain at a level “10/10” to make their recommendations irrefutable. I had just got Nicholas settled into his room in the Ottawa hospital when my social worker, together with the rehabilitation nurse, knocked at the door. The look on their faces frightened me.

  “What is it?” My social worker looked distraught. The nurse said that a child protection charge had been made against me. There would be an investigation into the allegation that I had overmedicated Nicholas in New Jersey, and that because I had indicated extreme levels of stress and exhaustion, I was possibly trying to harm Nicholas. At the very least, I had given extra morphine without a prescription and potentially put his life in danger. I was incredulous, but at that point, I didn’t comprehend the full implications of this turn of events. Then I was told that I could not be alone in the room with Nicholas. Easter weekend was coming up and Nicholas could not come home for a weekend pass. I was being investigated as a mother with intent to harm, if not kill, her child. A sense of dread, fear and helplessness oozed its way into my thoughts and dreams. I worried constantly that they might take not only Nick, but also Natalie away from us. It was ironic, I thought, that my greatest fear had been Nick dying.

  Trying to reinvent my life without being his mother was an unfathomable task. I had been doing his care for so long, and I defined my own personal worth through advocating for him to have the best of everything. I could not believe that anyone who knew me even a little would think I could ever harm anyone, especially my treasured boy.

  At that time, I was already in my second appeal process to the Ontario Ministry of Community and Social Services/Youth Services for more help at home. We had long ago maxed out available resources under the eligibility policy guidelines, and Lynne, our social worker, was helping me to navigate the appeal process. Several rounds of the appeal had resulted in the committe
e responding that they agreed that our needs outweighed available resources, but there was nothing more they could offer.

  For the committee, I had prepared a list of Nicholas’ daily care requirements:

  •a total of nine medications dispensed via gastrostomy tube 10 times per day, plus pain medication as needed;

  •skin-care monitoring and intervention required for tube site in abdomen and pressure sores on elbow and hip;

  •repositioning in wheelchair every half-hour for pain and discomfort;

  •lifting out of chair into bed 6 times per day for pain;

  •changing diapers and skin-care check 6 times per day;

  •tube feeding 2 to 3 times per day, each given by pump over a three-hour period, plus 70 millilitres of water given via syringe into the tube 10 times per day;

  •venting (allowing air to escape from stomach) from tube 4 times per day; overnight, 8 times repositioning for pain and/or sleep apnea, plus pain medication dispensing on as needed basis;

  •recording and reporting pain symptoms for physicians;

  •face/hands wash 3 times per day;

  •brush teeth 3 times per day, more if not able to take any food or drink by mouth at all;

  •shower once per day;

  •total clothing change 3 times per day;

  •total assistance for eating of oral snacks, monitoring choking;

  •careful manicure/pedicure care due to self-injury risk;

  •massage and manual traction of limbs for pain relief as needed;

  •wiping of nose and of chin for drooling 24/7;

  •communication (see Appendix B for how Nick communicates): interpreting each effort to communicate verbally, oral presentation of all new information (due to low vision) such as reading newspaper, books, homework;

  •social/emotional: changing television/radio stations, DVD, controlling computer and PlayStation while interpreting events on account of low vision, facilitating friendships and communication with friends/helpers.

  Associated risks of not performing the preceding tasks:

  •overdose or insufficient dose of medications will result in seizures, diarrhea leading to dehydration or constipation leading to symptoms of bowel obstruction and dehydration due to intolerance of feeds, pain, respiratory failure, death;

  •failure to carefully monitor and treat skin breakdown will result in infection, at tube site in abdomen; topical infection will contaminate spinal cord pain pump (located adjacent and requiring injectable refills), causing meningitis;

  •failure to reposition in chair and into bed for pain will lead to increased spasm, uncontrolled pain and skin breakdown;

  •failure to change diapers will lead to skin breakdown and infection;

  •underfeeding via tube will lead to weight loss and dehydration; overfeeding will lead to retching and aspiration pneumonia;

  •failure to carefully clean syringes and all tube-feeding equipment may result in gastrobacterial infection;

  •failure to vent or decompress stomach via tube will lead to retching, aspiration pneumonia and intolerance of feeds;

  •failure to monitor overnight pain and apnea will result in uncontrolled pain and death;

  •failure to record and report symptoms of pain will result in escalating symptoms due to lack of treatment;

  •failure to maintain proper personal hygiene will result in infection and social isolation;

  •improper monitoring of oral feeding will result in aspiration pneumonia and death;

  •failure to provide physiotherapy will result in increased pain;

  •failure to monitor and manage secretions will result in social isolation and aspiration in the case of flu/cold;

  •failure to offer total assistance in psychosocial activities will lead to isolation, boredom and depression;

  •failure to facilitate communication will lead to behaviour problems.

  The caseworker at the Children’s Aid Society and the child protection officer at the Children’s Hospital finally completed their investigation of me as a mother.

  On June 14, 2004, I received the following letter from our caseworker at Children’s Aid.

  Dear Mrs. Thomson,

  This letter is to inform you that your file with the Children’s Aid Society of Ottawa is now closed. The Society became involved with your family following a report that you had given Nicholas too much medication, without seeking proper approval from a medical doctor. Additionally, there was a concern that you were not effectively managing the stress of Nicholas’ care and special needs. After meeting with you and your family, and speaking with many of the community professionals involved with your family, to discuss the concerns, the Society does not feel it necessary to remain involved with your family. The allegations were not substantiated.

  To the appeal committee, they wrote:

  Dear Mrs. Thomson,

  As per our discussions throughout your involvement with the Children’s Aid Society of Ottawa, this letter is in support of your family requiring a higher level of community and in-house medical supports to effectively manage Nicholas’ ever-changing medical needs.

  It is the position of the Society that it is in Nicholas’ best interests to return home with his family. It is evident that Nicholas is an integral part of the Thomson/Wright family, with all reports describing a close, affectionate bond between himself, you, his father, and his sister. However, Nicholas’ special needs and fragile health place both him and your family in a highly vulnerable position should his needs not be met within his home.

  The child protection worker assigned to our case, the author of the two letters, became our advocate with the provincial appeal board. Children in Ontario whose needs exceed the maximum offer of help from the province can appeal to the Office of Child and Family Advocacy, essentially an ombudsman service with its own appeal board called IMPAC. That committee had already garnered plenty of practice working with families such as mine. One mother, Anne Larcade, had tried to launch a class action suit against the province for forcing her (and other parents) to give up custody of their children with disabilities when they chose to have them placed in a publicly funded long-term-care facility. Faced with inadequate service provision at home, Larcade and others were told the only way to access more help was to “buy” a residential placement by paying for it with their parental rights. The class action suit failed, but the story made the news.

  In 2005, the then Ontario ombudsman, André Marin, issued a scathing report titled “Between a Rock and Hard Place” describing in depressing detail the cases of 113 families who had been forced to relinquish custody of their children with severe disabilities in order to secure round-the-clock services for them; 196 other families were on a waitlist for the same deal with the province.31 Mothers had to sign away their parental rights and admit to being incapable of caring for their offspring in order to secure services necessary for their child’s survival. The either/or of state versus family-care arrangements, with very little in between, is still the status quo in Ontario, but it wasn’t always so.

  In the early 1980s, the provincial government instituted “Special Needs Agreements” under which families could share care of their disabled child with the Children’s Aid Society without giving up custody. In 1997, the government discontinued entering into these agreements, and families were left with no choice but to continue looking after a child whose needs they could not meet or else manufacture child protection issues resulting in the loss of parental custody in order to “buy” care.

  On February 7, 2009, the Ottawa Citizen printed a story about an Ottawa family who were on the verge of making that painful decision. Penelope McKeague was stillborn, but resuscitated after fourteen minutes, leaving her with multiple disabilities. Shelley Page reported: “Penelope had screamed for hours, screamed like she w
as possessed, screamed past exhaustion. Nothing would bring her comfort. Not even a steaming hot bath to loosen her tightening, always tightening muscles. Everything makes her frantic. The feel of her clothing. A sudden noise. Her mother’s love. ‘She doesn’t like to be cuddled,’ Kristine Gavrel says wistfully.”32 Gavrel, like me, reported wanting to be a mother, not a nurse. She felt a failure as a mother and incapable of soothing an inconsolable baby daughter who could not tolerate any form of stimulation, including being held. “She already had the worst birth imaginable. She was stillborn. And now to get proper care we have to give her away?” asks Ms. Gavrel. “That’s like another death. This is just a horrific situation. There is a huge stigma to saying you can’t care for your child. I am a decent person and a good mother, but in the eyes of society, I won’t be.”33

  Under what circumstances can mothers like Kristine Gavrel or me be allowed to mother our children with disabilities? If those disabilities result in needs that are too great for one person to safely provide care, then what options should exist? The current paradigm of state control or family control with minimal support is clearly failing the neediest citizens. The one reason that Kristine Gavrel and I got into so much trouble with authorities is clear. In our cases, representatives of state-funded institutions applied policy directives without a public acknowledgement that those policies did not serve our families fairly. Policies on child protection or social assistance were never written with our families in mind. Most people, policy-makers included, are not aware that we exist. But people with the highest care needs are surviving, and these are individuals whose care cannot be supported by any one funding entity alone. Separate policy routes such as through the Office of the Advocate for the Child (Ontario) should be much more accessible to families whose needs far exceed the norm. A public–private partnership with shared fiscal responsibilities is the model I believe will be necessary to care for our vulnerable loved ones. Currently, upper limits of home help available from provincial health and social services are too low for children with severe and multiple disabilities. Placement options do not exist except for children who are wards of the state. The public–private sharing of care and costs is a concept that does not appeal to a risk-averse state authority. Leaving aside the ethics of resuscitating a baby after fourteen minutes, should families and governments enter into shared care agreements? We already do so for many seniors. The sons and daughters of parents with dementia who enter care homes do not relinquish their caring relationships with their loved ones in order to secure a placement.