Autism Support and Child Cancer Services: Some Similarities
Saving child cancer services at Wellington Hospital has been a major public health issue lately. However, this situation need not have arisen if some forward planning had been done in the 1990s. It takes about 15 years to train a paediatric oncologist and there is a global shortage of these and other skilled health professionals.
There are lessons here for autism services too. Autism and child cancer services have more in common than might appear. Both require teams of highly skilled professionals. Both conditions have grown in profile over the last few decades. As recently as the 1970s child cancer was mainly treated palliatively while at that time autism was thought to affect only about 1 in 3000 people and institutionalisation was still an option. Access to education or support was problematic.
But now both child cancer and autism are increasingly common and New Zealand parents have expectations of intensive state funded intervention, partnership with providers and professionals, and participation for their children in schools and other settings. (Not to mention that children with autism are developing cancer and some cancer treatments – such as for brain tumours – may leave the child with autism like conditions). NGOs such as the Child Cancer Foundation and CanTeen have a visibility and status that autism NGOs can as yet only envy.
Autism support, like child cancer interventions, involves having a workforce of well trained paediatricians, speech therapists, psychologists, social workers, teachers and many others. So to keep the workforce sustainable there must be ongoing planning, professional development and support, union overage and good remuneration. In the early 1990s training and career development for speech therapists was cut. Once this policy was turned around after 2000 it still took several years to train a new workforce of speech therapists – people who play a vital part in autism support. As consumers we have a role here.
While my younger child has led me through the autism maze, I learned about child cancer after my daughter was diagnosed with leukaemia just before her 6th birthday. At that time my then undiagnosed autistic son was a toddler who spent much of his time running away shrieking loudly along hospital corridors – the embodiment of what the rest of us would have like to do.
In the late 1980s my young daughter was admitted to the old Ward 18 of Wellington Hospital for cancer treatment, so I have a personal interest in this issue. The ward was shabby and a relic of the era when parents had no place in their child’s hospital care. There was no Ronald McDonald house and accommodation for parents was limited. The Child Cancer Foundation did not have a local presence. There were no play therapists and non family members – even those who offered to read to or entertain children – were discouraged. There was no cognitive testing to monitor the effects of treatment or late effects clinics. Although Camp Quality had recently started there was little understanding of the needs of siblings. The best you could hope for was your child’s survival.
Then, as now, children came for treatment from a wide geographical region of New Zealand and from a variety of socio-economic and cultural backgrounds. Compared to today treatment was pretty primitive and cure rates not terrific. Several children died in our first few months there. But after a couple of years my daughter’s treatment finished and a new children’s hospital was built. Then there was a crisis as the oncologists left. The Child Cancer Foundation and parents combined to fight for the service. Gradually specialists were lured to Wellington (although the turnover remained high) and the service struggled on. But Hamilton and Dunedin lost their treatment centres.
A farsighted approach would have been to sponsor some promising junior doctors to train overseas as paediatric oncologists and possibly bond them to Wellington for a time. This idea was raised by parents but was out of line with the free market 90s.
For these were the days when the market dominated in health; there did not appear to be any workforce planning, there were no elected representatives on hospital boards, and little cooperation between the competing health providers. For a time there were even lines on the floor of the hospital to direct the client (as if there was a choice of treatment options!) to the outpatient visit payment office.
So fast forward to 2007 and what has happened? There is a nationwide Cancer Control Strategy. Centralised workforce planning has led to increased capacity in areas such as radiation therapy. Nurses have won a multi employer collective agreement and significant pay increases. Capital Coast Health DHB now has a majority of elected members and they have voted to ensure Wellington child cancer services remain in an innovative collaboration with Canterbury DHB. Meanwhile diagnosis rates rise as do the expectations of long term survival.
But finding paediatric oncologists is only part of the story. They also need to stay. Staff turnover in the whole paediatric oncology area is high as this is stressful medicine. The treatment regime is tough for patients, parents, and professionals who have to force toxic chemicals, pain and suffering on small children.
And sometimes children die. This is a dilemma for health professionals as hospitals are geared to interventions and treatment– not peaceful palliative care – and there is no local palliative facility for children. A child’s dying is sad but also very powerful – invariably these children are wise, knowing and accepting and can teach us a lot about compassion and generosity of spirit. Death is part of life. The experience of childhood cancer is not necessarily something to regret. It may be a chance to re-evaluate and prioritise your life. It has given me a strong belief in children as complete human beings whatever their age, worthy of rights, dignity and respect. They are not the possessions of their parents.
You also see the nice side of humanity. I still appreciate the kindnesses of others 20 years ago. When my daughter couldn’t stop vomiting in the carpark someone nearby handed us a towel. I will always be grateful to the friends who organised a food roster and support. And so grateful to everyone who helped ensure that she survived.
But having a child in hospital will exacerbate any existing tensions so families often go into basic survival mode. Family problems, money, employment, religious, relationship and even custody battles may be fought out over the child’s bed. The hassle of finding a park might be enough to tip an exhausted parent over the edge. I recall how mothers either dramatically put on or lost weight from the stress. Guilt and worry about the rest of the family is great. The nurses or other front line staff will often be the targets.
To survive in a caring profession you have to be cared for. Health professionals understand about tight resourcing in a free public health system. But the little things that make the difference often don’t cost much money: the mentoring; the professional supervision; the acknowledgement of a hard job well done; the back up support; the opportunities for professional collaboration. Hospital staff are not heroes or villains – they are ordinary people trying to do a job. We owe it to them to future proof their professions whether they are nurses, doctors, specialists, radiotherapists, dieticians, physiotherapists, administrative, NGO or other staff. And let’s not forget the expertise of the volunteers and the parents. Hospitals are organic, and to be healthy those inside need to be nurtured.
It is a similar story with all the people who work with our autistic children. Not forgetting those who support adults on the spectrum. Speech therapists, psychologists, social workers and teachers require education, career pathways, professional support and good remuneration.
You could think of both conditions diagrammatically as a series of concentric circles with the child in the centre circle, surrounded by circles of parents, family, support services, health and medical professionals. In my experience parents often feel alone and isolated but problems are often due to lack of communication and relationship development between circles.
Especially at this time of year, I would like to acknowledge all those health, education and other professionals who work with our children. It is great that people choose careers that are about supporting the wellbeing, health, education and humanity of others. As a parent I appreciate what they do, from the paediatricians to the street level bureaucrats, the teacher aides to the contract managers, the volunteers to the cabinet ministers. And all the taxpayers who fund it.
But Governments through their health and education services, need to continually plan ahead to ensure the professional expertise needed for both conditions is available, and then to adequately support and remunerate those professionals working in the field. We must sustain and grow the workforce and consumer lobbying is one way to do it.
No parent knows what is around the corner for their child. For those children who will need cancer treatment or autism support let’s work together, plan together, and share perspectives to ensure the workforce and the services will be there when needed. It is up to us as consumers to be continually vigilant and active.
Hilary Stace
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Luris Velez wrote on July 11th, 2009 at 2:34 pm:
To whom it may concerns: First of all, I’d like to thank you for taking the opportunity and time to read my email, whose contents are those of urgent and immediate attention. My name is Luris Velez, I’m a 24 year old single mom of a 3 year old autistic son. I currently live with my mom and stepdad in Tobyhanna, PA (Pocono Country Place). My situation is this: I am divorced from my son’s father due to the domestic violence I endured for over a year from his hands. He used to beat me even while I was pregnant with his son. Not to mention the fact that his beatings caused the life of the first child I was expecting with him (that pregnancy being the main reason why I had to marry him in the first place). I stayed with him after that occurred not because I wanted to, but because of his threats of killing me and my family if I ever left him. This, as you may already know, isnt unusual in domestic violence cases, where the woman stays with the man for the same reasons. The situation quickly became a nightmare, as I feared for my life every second of each day. I was practically a prisinor in my own home, meaning I had strict orders from my husband on who I could talk to, for how long and he had to be present for each conversation or had to be in a place where he could hear the contents of my conversations. If something was said he didnt approve of, a severe punishment was deemed to follow. He had to be everywhere I was-in the bathroom, in the kitchen, etc. He didnt want to work because he didnt want me to be alone, but then had to since my mom put her foot down and told him he had to work because she wasnt going to have him live in her home and not contribute to the bills. So he found a job not even 5 minutes from where I lived, in a supermarket. Each day he’d call 4 or 5 times to check on me, came to the house during his lunch hour and even had other employees from his job drive around the house to see if I was there or if anyone else was there with me.
What was worse, was the fact that he’d force me to have sex with him whenever he wanted and however many times he wanted, even if I didnt and trust me I never did want to. How could I possibly sleep with someone who did what he did to me? He also claimed he was too much of a man to use condoms and so he never did. Even so, I didnt understand his anger when I got pregnant a second time, since he wasnt using protection and didnt allow me to use any either. He was shocked and extremely upset. This time, he told me he wasnt going to kill my unborn child right way. He planned to either kill it when I was more far long, knowing it’d hurt me more once the baby had started to grow, having heard its heartbeats and feeling its movements or he’d disappear with the baby once it was born if I left him during my pregnancy. He’d torture me mentally each time I went to my obgyn, telling me maybe the baby was going to be found dead during the sonogram or be found to be missing an arm, leg, fingers, etc. I honestly was scared to go to my appointments and dreaded the sonograms, but was always relieved when the sonogram was done and I was able to see my baby moving, its heart beating, developing normally. He’d be visibly upset during and after my appointments, telling me my joy over my baby’s healthy development would be short lived since he’d plan to do something to it. This almost became a reality in my 4th month when he took a blade and proceeded to try and cut my stomach from left to right (he said it was a csection) but I quickly jumped back and no severe damage was done. I still have the scar from that incident though. Afterwards, I knew I quickly had to get out from this hell. I wasnt about to lose a second child to him.
I turned to my mom for help, who already suspected something was going on. She’d always see me with bruises and asked me about them. I, of course, being under threats, told her it was nothing, that I had fallen down and hurt myself. She was never convinced and begged me to tell her the truth. I never did. She’d tell me she wanted to call the cops to escort my husband from the house and I begged her not to, knowing the threats he’d given me of killing me if I ever left him or put him in jail for what he was doing to me. My mom always knew what was happening even though I denied it to her. She didnt call the cops not only because I begged her not to, but because I told her I’d deny everything to the cops and therefore, nothing could be done. But I was the one who truly knew that in order to save my son I had to gain courage and throw him out, and I did. I waited for the moment where my mom was home. I told him to get out. He did leave, not before he threw me against the wall and almost made me fall to the ground on my back. Once he left, I went with my mom to the police station, where I received an order of a protection and a order for arrest was placed for him. He was arrested 2 days later in his job but being to the fact that he had no prior record, the government bailed him out. The case against him for domestic violence lasted over a year due to the fact that his lawyer kept delaying the case, giving excuses as to why they werent prepared for the case or why they couldnt be in court during those days, etc. Even so, he was found guilty of domestic violence and given 1 year of probation, which consisted of group therapies every week and that was it.. He finished probation, supposedly extremely well.
The divorce case was also going on along with the domestic violence case. The same set of events that happened with the domestic violence case occured with this one, also lasting about a year. I was finally divorced (my son was already born when I was divorced) and I was given sole custody, and his father was given supervised visits on alternate saturdays, 1 hour each time, in an office with social workers. I had to leave my son with unknown people twice a month, where he clearly didnt want to stay. He’d always stay crying and when that would occur, the social workers would angrily grab him from my arms and tell me to get out before his father would get there. When I would return to pick up my son, he’d be dirty from head to toe, his shoes would be off with his socks completely dirty, he’d have scratches, bruises, red eyes from having been crying so much. When I asked the social workers the reasons why my son was returned to me in these conditions they would answer sarcastically, almost in a threatening manner, telling me they couldnt be watching my son all the time, basically they werent there to babysit but to just sit there and watch father and son interact, and that the bruises and scratches were from my son playing with his father. When I asked what would happen if I were to leave my son there with either a bruise and a scratch and they told me they immediately would withhold him, report me to social services, obviously have me arrested for child abuse and custody would ultimately go to his father. I couldnt believe what I was hearing-If I left him in those conditions, my son would be taken from me, but if he was returned to me after having been with his father, nothing could be done. To my face, they would tell me they simply didnt care how I felt or wanted to do.
Things quickly turned to worse during one of the visits when I went to pick up my son. I saw that they brought him to me with an icepack to his head. When asked what happened, they told me he slipped and fell from playing with his father, but that it wasnt nothing to worry about. This time I wasnt simply going to let this one pass by, since it wasnt his first bump on the head, there was at least one more. The last one wasnt that bad, but this one looked really bad. He had a bump sticking out from the side of his head. I immediately told them I was going to take him to his pediatrician, and they didnt tell me much, just to let him know what the doctor said. Since, it was a saturday, his doctor wasnt in the office, but I called him. He asked me if my son was conscious, throwing up etc. I told him he was conscious but no vomiting had occured. He told me to give him some tylenol and bring him into his office that monday, but if he vomited, to take him to the ER immediately. He was pretty much out of it during the day, but when I put him to sleep, about 5 minutes later, he woke up throwing up and I immediately ran with him to the ER. The doctor there ran some tests, and results were that my son had a minor concussion (I have the hospital report if you need to see it). I call the social workers, sent them the report, but they pretty much disregarded it. Told me all kids get hurt, and that I was NOT to use that as an excuse to ask the judge to suspend the visits. Here I was again being threatened for the simple fact that I was trying to defend my son from the irresponible people who were supposed to be there to watch my son not let him get hurt because he needs to interact with his father.
To run things a bit quickly here-my sons visits with his father was reevaluated (I’m not really sure of the exact date, but I will look for it if information is needed) to see if they were to be continued as they were, supervised, or unsupervised, longer visits, meaning alternate weekends, OVERNIGHT. Again as I tried to explain my fears, such as the biggest fear I had of my ex husband making good on his threat of kidnapping and disappearing with the baby as a revenge towards me, the social worker just laughed in my face, told me he wouldnt do that and proceeded to ask if I was under psychiatric help because comments like that would in the end make me lose custody of my son. She looked at me very firmly and threatened me by saying just that, if I kept making those untrue comments, both herself and the judge would see me as uncomtempt at being a mother and would take custody from me. I couldnt believe that not even the social worker would understand how I felt, knowing that hundreds of cases similar to mine, had the same circumstances and an unfavorable outcome where the father made true on his threat of kidnapping or killing his child and then forcing the dept of families to take charge AFTER a tragedy like that happened. Only a tragedy made these people change their minds and say, oh the mother was right, she wasnt crazy, etc. I could NOT, will NOT, and wont EVER, standby and wait for this to happen to me. I was desperate (and still am) because everything I tried to do in defense of my son I was shot back with threats of losing custody. I still to this day dont think defending my son is grounds for losing custody and I also know that the social workers, judge, the whole court system has treated me and still is, in an unprofessional manner. I dont think its a moral value for people who have a job in defense of children to go around threating their parents this way or treating their parents this way.
After this meeting, I knew I had to find a way to get out of PR in order to prevent my son from having to spend weekends with his father, a stranger to him who doesnt care for him. Who is only a revenge motive for him. I hired a lawyer to help me with all this-custody and divorce. He had been recommended by my family who had used him for prior cases and swore to me he was an excellent lawyer, I trusted their judgement. I was told that in order for me to leave PR to go to US I had to inform the courts in PR first before leaving and they would ask the father if he had a problem with me leaving. If he said no, then the court would give a date for a hearing in order for me to explain my reasons for moving; of course I couldnt say because I wanted to save my son or that I didnt want my ex husband to come near my son. Instead I would say (which was true ) that my financial situtation in PR wasnt good, my stepdad had lost his job and found one in new york (where was were we all lived before, and where I grew up) and he had gone ahead of us to try and set up living arrangements for us, my mom also was without a job due to health issues (carpal tunnel syndrome, among others) she had to have surgery but the doctors in PR werent doing much for her, she didnt have a private health insurance, just the government one and the doctors from there werent good and she knew she could receive the needed treatment in the US;also the fact I lived with them, depended on them, was unemployed and really had no place to live in in the event my parents moved to US without me., not to mention the fact I was born in Bronx, NY, grew up in NY, main language was english-all favorable to me moving back to US. But my lawyer told me since we both knew my exhusband was going to put up a fight and not let me leave, not to inform the court of my plans, to leave and as soon as I had the address to my new residence, he’d inform the court and reasons for leaving. I did exaclty that, not knowing that this would lead to bigger trouble in the future.
I first moved back to NJ, and as soon as I left PR, the real war began. My exhusband started submitting motions to the court saying I kidnapped his son, wanted me arrested, wanted full custody of my son, etc. He went on to say he wasnt informed of my move and supposedly went to the area of where the supervised visits with my son took place in PR, waited the full hour and left when I didnt show up. He then supposedly asked the social worker there (who already knew of my move but pretended to go along with him and say she didnt know either) if itw was true, she said she didnt know and would call my lawyer to find out. This was all lies, because my lawyer submitted a motion to the court informing them of what I had done, and on that motion, were the addresses of where the motion was sent-to the social worker, to my ex husband, to my ex husbands lawyer and the judge. He submiited a motion saying he had no knowledge of my move, the contradicted himself in second one he submitted saying he was informed but just wanted to make sure it was true. I guess the judge disregarded it because she didnt do anything. She also disregarded his claims of kidnapping and having me arrested. I figured my lawyer was handiling the case to the best of his will.
I had to move from that apartment a while later because since we moved to the 3rd floor of the building, the tenant downstairs kept complaining to the landlord that we were making alot of noise, that she could hear the baby running around. We told the landlord that any noise we were to make at that point would sound louder to her because we recently moved there and we had no furniture yet since the moving company still hadnt brought our stuff. But the landlord told us she was complaining too much and we had to move. So a friend of my stepdad at work was renting a 2 bedroom apartment and gave it to us. It was going to be a temporary residence because we were looking to buy a house, where my son would have his own room, I would have my own room and my parents have their own room. We moved a few days later, but the trouble with my ex kept escalating. He kept saying he was afraid his son wasnt in liveable conditions, wanted to make sure I was taking good care of him and I guess the judge believed his claims because she ordered a home study to be done at my house by a social worker. We passed the home study with flying colors.
I want to fast forward to my current urgent situation-My ex is one who wont leave me alone. Right now his main source of power to get to me is through my son. He’s constantly in court submitting motions that I’m abusing my son, that my sons current diagnosis of autism isnt true that I’m making it up to keep him away from my son (even though Ive submitted all the paperwork from his therapists and doctors to the court)-It’s really getting out of hand.
I recently found out his current motion was submitted June 9, 2009 stating the above among other false accusations. His lawyer has resigned the case and he submitted that motion representing himself.
My lawyer is trying to get the judge to overturn her order for this month july 22-aug. 1 of my son staying overnight with his father due to the fact that my son doesnt know him and that when he did spend 5 days with him in april, his autism worsened, he lost weight, aggressiveness has escalated. But she says it will be an uphill battle because my ex lawyer basically turned me against the judge, and to the judge I’m the one who has been going against her orders and my ex is the saint who does everything she says and is the model father.
I’m not asking for his parental rights to be terminated-I know thats not possible but all I want is to save my son from anymore trauma, to make the judge believe me and take into consideration whats happened. I cant and wont let my son be put into further trauma simply because dad has to see him. I want transition. For my son to see his father a few days during those 9 days I have to be in PR and not stay overnight with him. I need to have someone to make that judge listen. We’re not dealing with a normal 3 year old; instead we’re dealing a 3 yr old autistic boy, who doesnt talk, doesnt know how to defend himself, who shouldnt be looked as another case number, another custody battle, another revenge tool for a man to use against his ex wife who he himself abused for a year and who he cant physically abuse now and wants to have power, control over her through the child.
I do believe that the judge is breaking some sort of moral rule going against medical orders, medical statements from not only 1 person, but from many therapists, many doctors, psychologists. I cannot just sit here and wait her to decide whether to belive me or not than decide the possible welfare and emotional state she deems necessary for a special needs child. If she wont listen to me or if she just doesnt want to bother with my case anymore, I want someone of some higher authority to MAKE her listen before a tragedy occurs.
I beg and implore you to help me. I will do whatever it takes to save my son.
Thank you for your time & I hope to hear back from you at your earliest convenience.
Luris Velez
Hilary wrote on July 11th, 2009 at 8:02 pm:
Luris, you have had a really tough time, and I’m sure there are many people who can relate to your desire to protect your autistic son. This website is based in New Zealand, so I’m not familiar with what is available to help you in the US as we have a different child protection system. We have women’s refuges which support women through such traumatic custody issues, and some strong legislation to protect children. I hope you can find some good support for yourself and your son.
Stop Stuttering wrote on June 7th, 2011 at 10:14 am:
Luris – yours is such a brutal story. I know you posted that a couple of years ago now, so I do hope you are in a better place.
Alena Markus wrote on July 15th, 2011 at 1:20 pm:
Children who has this kind of health problem really need love and support from their parents because in this stage, it is essential that they are aware that their parents are willing to sacrifice everything and take care of them without any doubt.
Taylor wrote on September 3rd, 2011 at 3:41 am:
You’re right when you say no parent knows what’s around the corner for their children.
For those of us in need, we need to come together and help each other out.
For those of us in good health, we need to hug or kids and count our blessings each and every day and reach out to those that are having a harder time.
Lexie wrote on October 11th, 2011 at 5:00 pm:
This post is very informative. Autism and cancer-positive kids need to have a normal life. Despite their special and critical condition, they have to feel like they are among the regular kids. This will help them become stronger and for the children who has autism, exposing them to environment with normal kids would help them to cope up. In this case, the parents or guidance need to take time and patience in guiding their child, Therapies, regular and streamline education, depending on what would suit for your child would be a great help.