This part is just to talk about Danny as a non-verbal autistic and his life as such. What happened before he was born, after birth, his childhood, interaction with teachers at different schools, etc. Every detail of his life as far as i can remember, with pictures, assessments and how our decisions, as his parents following the advice of doctors and "experts on autism", affected the quality of his life.
I decided to be on contraceptives while I adapt myself to Canada and learned its language, but after 2 years of daily headaches I had enough and it was time to start a family. Six months passed and no pregnancy, I was scared that I couldn't have babies but 3 months later my gynecologist confirmed my pregnancy. Two ultrasound tests showed my placenta was low, according to the technician it wouldn't prevent me to have a normal delivery but my gynecologist angrily said he was responsible that I could bleed to death and a c-section was in order. Then on my 5th month of pregnancy I started to "spot" and my gynecologist ordered me complete bed rest and to be sure confined in a hospital. Scared I spent two months in the Toronto General Hospital Hospital not exactly "confined" to a bed and terrified of loosing this so awaited baby. In the hospital I felt safe but in bed 24 hours tired me out. Besides anybody knows a hospital is not a quiet place, nights were awfully noisy and unable to sleep I decided to ask for "sleeping pills" when that didn't help I asked the doctor to let me go home. But after 2 weeks at home I started to "spot" again and so, terrified I went back to the hospital....and to more sleeping pills.
I remember my doctor telling me that he was about to go in vacation and if I wanted he could deliver the baby and my answer was, "Let the baby decide when it wants to be born". Five days before Danny was born, the nurses started to get concerned, the baby heart rate was slow and with every shift of nurses their supervisor came to check on me, the question was always, "when the last time the fetus moved?" and under their breath commenting about no knowing where my gynecologist was. Finally, my gynecologist came back from his vacation, murmuring angrily something about, "All the time they knew where I was, they had my phone number" and immediately ordered an emergency C-section.
It was Saturday early in the morning when my husband received a phone call from the hospital. A nurse explained the urgency, he was told that the "fetus was in distress", suffering from lack of oxygen, that the baby had anoxia or hypoxia, words to the effect, and that an emergency c-section was to be performed on me. I wasn't told anything. I just went through the operation.
Danny was born on June the 1st, 1974. After his birth he was kept away from me for 3 days without an explanation. Later, I was told he had jaundice and was kept under the lights and when I asked what was being fed the nurse said "sugar water". On the third day, at night, walking carefully holding my belly I peered into the nursery window to see my baby, there he was in the incubator crying, his eyes covered and kicking with his legs the end of the incubator. When finally the baby was brought to me I noticed immediately that he was unable to nurse, but nobody showed concern and after 12 days we were discharged with a set of bottles and instructions. At home after a month of trying to nurse him, in pain running fever from infected impacted breasts I went to my doctor's associated (ignorant doctor) and finally to a pediatrician who told me to put him on formula and the baby started to put on weight.
The same pediatrician from the hospital saw Danny regularly for about 8 years. He received his vaccines according to the schedule of the time. At three months, he cried a lot, the doctor said, "he is a "colicky" baby" and surely he was teething and some babies had diarrhea from teething. On and off he had diarrhea, they lasted for days together with severe diaper rashes. And so I was told to give him apple juice for his diarrhea, zinc cream for his rash and Anbesol for teething and I did ! nothing worked!
After one of his bouts of diarrhea that lasted 5 days I gave Danny Kaopectate which stopped the diarrhea instantly and he was able to eat, he really was starving baby! At 4 months he followed me on his walker, chit chatting on his own babbling way. At 6 months he was freed from the bottles and discovered meat, he just love meat! with no teeth I had to shredded the meat fast. At 11 months, he walked and over night, got 4 teeth. He was a very bright baby, happy, smiling, very social, curious and from sesame street, and from us, learned the alphabet and numbers in three languages and he loved to show off on request. He loved to sing the songs and asked for drinks, cookies. He was very inquisitive, we thought we had a gifted child, so advanced.
Then, on January 18th, 1976, at the age of 19 months Danny received his MMR vaccine and a couple of weeks later he developed a temperature of 104c. I called the pediatrician office and his receptionist relayed his message that it couldn't be 104c that "thermometers from drugstores were not very reliable" and she added to give Danny a baby aspirin every 4 hours. I did that and every time his fever went down to 102 and then spiked to 104. The fever lasted for 3 days apparently with no ill effects. He was just sluggish in the mornings.
On April a young daughter of a friend came to visit, wanting to play with Danny. While I went to the kitchen to get us something to drink I heard a bump I ran back to see Danny slumped by the corner of the fireplace stunned I picked him up and asked the girl what happened, she said she had lifted him up and while swirling him up on her arms the baby slipped off her hands and fell hitting the corner of the fireplace hitting the left side of his head. Seen me distraught the girl left and I called the pediatrician office for advice and his receptionist relayed the doctor's message to wake him up every few hours for the next 24 hours, which I did. After that, gradually, Danny became depressed, confused, forgot his ABCs and numbers he knew in 3 languages. He would pull chairs to reach light switches to turn the lights on and off, slowly and deliberated. To climb counter tops in the kitchen to open and close doors, all that done with vacant eyes in a trance-like state. He got stuck spelling the same two words "s-a-l-e sale!", "e-x-i-t exit!" and wasn't learning new ones. He forgot how to play with his toys and to make words from his block letters. With his arms would sweep the blocks off his table. Ripped pages of books. Later he would become rambunctious happy, not able to concentrate on learning anything, he had a beautiful smile that spelled trouble, he tended to run unexpectedly very fast. He would say full sentences about things without looking at anyone. While walking with him and his baby sister on the stroller I had to hold him behind the stroller, covering his baby hands under my hands, otherwise he would get his fingers in every mailbox or touch things and people. His baby sister born on November 1975 was at 11 months already talking words with meaning and when I mentioned that fact to the pediatrician he just said, "boys talk later".
Babysitters were concerned about Danny's delays and behaviours and let us know. The earliest was on November 1975 when I spent 10 days in the hospital delivering his baby sister. This particular babysitter told me that Danny, at 15 months, was not like the other babies he had cared for, he wasn't not obeying, not potty sitting with the others and that she knew the difference she had cared for babies for over 2 decades, we dismissed her concerns. We thought Danny was too young to potty training. Another babysitter noticed that Danny was not responding to his name, didn't sit with the others and couldn't get him interested in reading or playing. We dismissed their concerns because Danny knew all his letters and numbers in three languages and knew songs, so we thought we had a misunderstood gifted baby.
All that changed on his second year. I started to get concerned but his father thought it was too early, babies take their own time to develop. On his third year on August 1977 I couldn't wait any longer I had to know and so before his younger brother was born, I asked for help. Two nurses from VON came to our home to test Danny. The older nurse placed the blame on me, she said, "lack of stimulation" but the younger one shook his head and put me in touch with a new school called "Adventure Place". Soon after a psychologist and teachers interviewed us at home and while waiting to be accepted they sent a teacher to teach me how to teach Danny reading with the help of chocolate like "Smarties".
In order to get accepted to "Adventure Place", first we were sent to see a psychiatrist who made us wait 45 minutes, at such time we were wondering how a psychiatrist would help Danny if he couldn't speak, at no time we suspected that we were the ones investigated as parents. The psychiatrist after talking to us for 10 minutes he determined that we were "normal folks" and charged us extra money to say that. Danny was sent for three tests at the Sick children and finally the psychologist from "Adventure Place" determined that Danny had "Autistic features", meaning that Danny was not completely "autistic" because he had eye contact.
Finally, on March 1978 Danny at the age of 3 years and 9 months went for special schooling at "Adventure Place", where he received excellent education for 5 years until he was 8 years old. A pity that he couldn't go longer. The people there were excellent. At the same time we were advised to contact Geneva Center and to accept the help of Homemakers.
After Danny and his sister got sick with "impetigo" a very contagious rash that didn't affected their baby brother who was just 10 months at the time, I accepted the Homemakers to come to my home. They were very kind ladies and the program gave me two days from 9am to 4pm of free time to do whatever (I was so tired I slept in the subway). It went on until Danny's younger brother went full time to school.
At the age of 8 Danny went for another 5 years to a regular school and it was pitiful situation there. Still I have to mention in a positive note that the head strong teacher Danny had tried very hard to teach him and she was the first to encourage his artistic work. The school had a hard time managing his need to run. The teacher rejected assistance and the advice from Adventure Place and Geneva Center to give Danny breaks for a few minutes of running. There was so much trouble with his running that when we received a letter from The Clarke Institute of Psychiatry for a psychological assessment we thought the conflagration would end when these educate people in this institute would side with the experts recommending "running breaks" for Danny or some sort of arrangement. Instead we were further pulled apart and the situation got worse.
On October 1985 when he was 11 years old we took Danny for a "Psychological Assessment" at "The Clark Institute for Psychiatry". The first result gave him a mental age of 4, which angered his teacher who thought they use the wrong test. The psychologist sent us to a psychiatrist who fell asleep while Danny's father was explaining Danny's problems and woke up just to write a prescription for Thioridazine. No explaining adverse effects. We gave Danny his first pill on November 2, 1985 at night, a couple of hours before bedtime as prescribed, that night he woke us up at 1 am screaming, with wide wild eyes trying to climb the wall.
We saw that and noticed some the adverse effects, like hives and fainting, but we didn't connect his new impulsiveness to run to the drug. We didn't connect to the drug seeing Danny getting stuck writing or coloring until making a hole on the paper. We were told his inability to move in the mornings to get ready for school when asked to was "behaviour" more to it, he was testing our authority as parents. Urinating on his bedroom and inability to go to the washroom was also "behaviour" we were told to use "adversive" treatment in which he would have to mop the floor of his bedroom, every time more and more, after a year he was almost moping the whole house and he continued urinating on the floor of his room. The worker concluded her support telling us that she had to write in her report that it was not her who failed but we as parents failed to follow her advice.
And I didn't connect to the drug when he would become "frozen" and forced to move he would scream and hit as he did to me one day when the car broke down. We ended up in a police car.
In that time after Thioridazine there were several changes on his "behaviour" like taking to climb roofs and running twice to the subway both times police was involved. His father nailed the windows and we kept doors locked.
We had new home worker and after a summer break she came back and notice Danny's hands spasms. Danny was coloring and suddenly would drop his crayon, his hands would stretched backwards, it looked painfully, his eyes would go upwards and his jaw would drop opening his mouth painfully for us to see and it would last no even a second and he would go back to his coloring with no memory of the episode. Seeing that she thought it must be Tourette's Syndrome (TS), because his father had "nervous tics" and to check it out. Eventually, Danny was seeing by two specialists on TS who agreed to disagreed. Next year another psychological assessment and this time prescribe Stelazine with same effects. We promised ourselves that Danny wouldn't take anymore these kind of drugs. I wish we could have kept that promise.
Through the years slowly, painfully slowly, we realized as his parents trying to get medical help for his "condition", that there was a lot to learn about our 'medical' care in this country. We learned these professionals are not infallible. That many had no idea what was his "problem". Some were arrogant, intimidating, sarcastic if questioned. We learned that some doctors were more compassionate than others. That some doctors had "integrity" and some others not much. That there was a "Standard of care" of using these drugs on the "vulnerable" like Danny "to keep them safe" no matter the painful adverse effects. The same from our government completely disinterested on listening to us parents, our words worth nothing against "experts".
Much later, on psychiatric drugs, we found out that doctors are not in any obligation to disclose the dangerous adverse effects, we guessed in case that the patient was scared away. When drugs' adverse effects manifested doctors told us, "No, it's his autism". When drugs complicated his original condition Danny got diagnosed with psychiatric disorders. By 1999 we found out that he had like 6 psychiatric/neurological diagnoses besides his autism.
Doctors did not believe, recognize or acknowledged drugs' withdrawal symptoms and much less on a autistic. When Danny was taken off a drug we observed new strange "behaviours" and an increased in intensity of his autistic "behaviours". Danny became aggressive and worse he started to bang his head. Trying to describe what we observed to a member of the group home administration we were stopped and told that what we were talking about was called the "rebound effect". However, for doctors "withdrawal effects" and "rebound effects" didn't exist. So tight close is the minds of doctors protecting their drugs that one told us angrily, when we insisted that it was the drug causing Danny's problems that if our son got "worse off the drug, he needed the drug".
In our struggles to get a better treatment for Danny we encounter a wall and repeatedly we were told by experts and doctors that what they were doing to Danny was in "his best interest". We, as his parents, couldn't be heard, as the government told us "we have to trust our experts in the community". And, if we questioned the "treatment" as making Danny's condition worse, we were told that was the "standard of care". They had many other excuses some very silly, some with fancy wording. Their "treatment" never fails, we are the ones to be blamed or, easier blame Danny, after all he is the one with the "problem" and we do not want to see how "complicated" was his "condition" with so many psychiatric disorders! Danny, after all was also a non-verbal autistic he couldn't object, he was a nobody, and anybody could say anything of him and do anything to him and get away with it. Furthermore, when confronted these professional insinuated that we had "a secret agenda", wanted to "ruin reputations". They went on to tell other doctors that we were "in denial" over the "real" "condition/s" of our child. And, when all that fails, make threats not only to the family but to anybody that stood up for Danny and his family.The most disgusting done by these people "caring" for Danny was to take it out on him, to make him a danger to himself and to others and justify the use of Risperdal to the government. A representative from the government even said to us, "There is no shame in having a mental illness, I had depression and I was treated with Prozac for 6 months", no realizing that there is a difference between a person capable of speaking how the drug is affecting her/him and giving drugs to a child incapable of reporting the effects of the drugs.
We also learned that the "consequences" of their psychiatric "treatment" was expected and wanted. Some the drugs adverse effects were neurological causing extra pyramidal side effects or drug-induced "parkinsonism", meaning abnormal movements. Danny became double incontinent with Risperdal and he almost died from it and almost killed me. His ability to move spontaneously ceased and couldn't do creative artist work. Every day I would find him sleeping in a chair. Some autistic gained weight on risperdal, he lost weight and couldn't sleep. His drug-induced self-injurious behaviour went out of control. The use of major tranquilizers on the autistic is to prevent them to place any demands on the staff, making it easy to care for him. It was a shock for us to realize that was the end of their use of "meds", no interest on seeing improvements on our Danny.
Some caregivers in the group home spoke up on Danny's defense and were fired. Others stayed out of compassion. Through the years we observed how Danny brought up the best and the worse on people of all kinds. Danny have put to the test every system made by men, we learned a lot about the educational system, the support system, the medical/psychiatric and he is still doing it. Sadly, we just go along for the ride, not able to do much.
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