Danny's Life

DANNY MULLER 1ST JUNE 1974

FROM BIRTH TO 16 YEARS OF AGE

First signs of trouble: At 5 months in my pregnancy I began “spotting”, confined in the hospital for 2 1/2 months and was given “sleeping pills” to help me sleep at night. Five days before Danny was born he showed “fetus distress” or, lack of oxygen, and he was delivered via an emergency C-section. Twenty-four hours later Danny developed jaundice and spent a couple of days under the lights in an incubator, ten days later we came home. After a month, Danny, unable to nurse is switch to formula, began to thrive. Cried constantly, Danny is considered a “colicky” baby or that he was “teething”. Suffers regular bouts of diarrhea. At 4 months learns to use the walker, he follows me everywhere. He received all his vaccines and at 11 months walks and cuts 4 teeth all at once. At the same time he discovers Sesame Street, learns the ABCs and numbers in three languages, learns to sing songs and spells simple words. Runs from where he is when he hears a particular commercial with a little girl speaking on it. I thought I have a gifted child. Enjoys his bottle and sleeps with it. Also likes to be sitting in our laps playing with toys and doing things. Danny is fascinated by mirrors, loves to talk and smiles at his image. Suffers a prolonged bout of diarrhea while in our way to Europe, I gave him Kaopectac, which promptly stop it.

November 19, 1975, his sister is born, Danny at 17 months went to a babysitter who notes that he does not respond to ‘No”, “don’t do it” I had noted that too, and adapting myself to him I was telling Danny what to do instead, thinking that was normal. She went on saying hat he does not show when he needs “to go” and refuses to sit in the potty with the other babies. I thought he was too young for that.

January 1976 had his MMR vaccine; on February he run high fever for 3 days. On April, when he was 22 months, a tall girl lifted him up above her head and was twirl him when Danny slipped off her hands and landed against the fireplace corner hurting the left side of his head . I found him stunted for a few seconds before crying softly on my shoulder. Shortly after he started to forget his numbers, mixing them up. He showed sadness and repetitive movements. Danny was quite “out of it” for a time. He got “stuck” on the spelling of “S-A_L_E, Sale”, E_X_I_T, Exit”, saying them like a robot. Other babysitters complained that Danny didn’t sit down when asked to. By 23 months he still was very withdrawn. But, then, suddenly, he changed, he became full of activity, smiling and touching things. When his sister was 11months (October 1976) she started using language while her brother was saying “I like people” to none in particular. So, I went to the pediatrician who said: “Boys speak later than girls”.

One day, I found him, all smiles, with a large plant completely off the pot in his hand, I didn’t say anything and replanted it. He did it again several times. I asked other mothers for advice, I was told to show him “who is the boss” and to slap him hard on his hand. So, next time, he did it I slapped his hand until red, his eyes were full of tears, still he went on and did it again. I decided that one of us needed help. I waited for another year and I asked for help.

At 2 years, Danny lost his last bottle, I did a lot of acting searching for his bottle, he went to bed without it and without fuzz, I found it later on behind a radiator and thrown in the garbage. He never asked for his bottle. Danny liked to follow his father wanting him to print the ABCs. Danny discovers MacDonalds and in our walks we have to stop by one. He also became afraid of the driers in public washrooms. He pushes chairs to climb kitchen counters and opens the cupboards. He is still no toilet trained.

June 1977, Danny at the age of 3 does not get any better; he runs and is hard to get him to do things. I needed more help than the Pediatrician can give me. So, I called around and the VON nurses came in August 1977. VON nurses came to do tests; one the nurses connected us to Adventure Place who in turn sent us to Hospital for Sick Children. We also went to a Psychiatrist who told us after 10 minutes that we looked like “normal folks”.

While still pregnant with his younger brother I tried to use a harness to keep him from running, people’s comments saying, “he is not a dog” dissuaded me from its use. Teaching traffic lights and the danger of cars was vital.

September 1977, The Adventure Place’s psychologist was the first to break the news he said that Danny had “autistic features” and shortly afterwards a teacher came to teach us to teach Danny. He had fun with her she was very gentle with him, used Smarties as reward. We were told to take him off diapers and to tell him when he wet his pants, “Danny, touch your pants” He would do that and to ask him if his pants were wet to change them. He would do that; we noticed he needed to be taken to the washroom at least every 2 hours.

October 1977, my sister left Danny in a phone booth when she couldn’t persuade him to give up his idea of going to MacDonald, when she came back from the library Danny was surrounded by firefighters from across the street. My sister and Danny rode back home in a police cruiser. She remembers that the Firefighter’s physician observed lead poisoning in Danny’s behaviour. I should have paid attention.

On March 1978 Danny goes full time to Adventure Place and his sister goes to Montessori for a year before join him full time as a “model”. On May 31 1978, at The Hospital for Sick Children, a Psychologist Mrs. G. Babatzanis sees Danny, an hour later Dr. Friedberg tested him for ENT. That same day Danny underwent another test that I can’t recall.

His running continues to be a problem and the rubbing of his hands (stimming) gets in the way. The whole house content is labeled and Danny plays the game of answering to “What is that?” Danny answers correctly to all of them, but does not use the question himself, just once, I don’t remember how old he was, he was in the shower and he pull his abdomen with one hand and looked at his belly button and then clear as a bell said “what is this?”

Geneva Centre successfully teaches me to get him to sleep early. He learns to respond to verbal commands “Come this way” and to give you the hand to cross the street safely.
We observed that, sometimes, sudden sounds upset him. Now he is affected by his sister shrill excited voice, he covers his ears and shakes his head. A speech therapist thinks that Danny has Apraxia by the way he uses his speech. He is a very busy guy playing with many toys that relates to numbers and letters. Next, we observed that babies crying affects him and causes to have a tantrum. His tantrums start with chewing on the shirt collar, rocking back and forth and we know to lower all sounds otherwise he goes into the next stage of galloping and rubbing his hands. We learned to lower the sounds to prevent tantrums. NOTE: I found out that sounds could cause non-convulsive seizures that look like tantrums or rage.

December 1979, I bought a ColecoVision for him because he loves all sort of electronic gadgets, toy typewriter, Read and Spell, Math and Count, calculators, he takes a few months of watching his siblings playing before controlling it. I noticed that he responds to “indirect teaching”. Summer Camps, organized by the Autism Society. We decided that at 7 he was too young to go. Next year Danny went camping and did it continuously for 6 consecutives summers.
September 1982, usually Adventure Place does not provide services after the age of 7 but Danny stayed until he was 8 for a total of 5 years. He went into St. Edwards S.S with his other two siblings and some kids from the neighborhood. His running is a liability. He plays with saliva and sometimes pinches other people. We are taught to ask him to keep his hands in his pockets or he sits on my lap with my hands holding his. That summer he poked holes on every screen in the house, we had to lock every door with keys. I learned how to drive just to contain him, even though he loves rides on the subway.
April 1984, his grandmother stays at our home. March 1985, his Grandmother dies.
April 1985, Danny discovers wax crayons and decorated furniture with them. I gave him paper and a desk and began creating beautiful color combinations scratching the colors. Danny spends hours doing artwork. Darlene came to work with him.

Saliva smear was our main concern during the assessment at The Clarke Institute of Psychiatry on October 4, 1985 it is recommended Stelazine but he was prescribed Thorazine. He was on Thorazine November 2, 1985, even though his teacher was proud of his artistic talent and his progress on math, reading, and writing, and spelling, his “behaviour” got worse. He was confined to the classroom during recess to avoid his compulsive running. He gets “stuck” writing letters and numbers or “stuck” at the typewriter keys. On February 1986, we spent a day at the Hospital for Sick Children and because of a broken car ride promise due to a car breakdown Danny raged, tried to head butt me, while I hold onto him trying to prevent him from running into Yonge Street, two young policemen across the road saw me and got Danny into their cruiser. April 1986, Danny develops sudden tics that Darlene, his worker, made her think of Tourette’s Syndrome. We went to two Neurologists who agreed to disagree.

Summer 1986 according to second report done by The Clarke Institute of Psychiatry on October 14 1986 our main concern was Danny taken up running from the house to climb roofs. The first time he runs out of the house by breaking through a window screen, climbed an antenna TV to get to the roof of a neighbour’s house. He climbs house roofs and average of once a week. We nailed all the windows. Through an unsecured window he runs twice to the subway, both times the police are involved. He learns to ride a bike but the need to rubs his hands overcome him.

Summer 1986, Danny gets in a neighbour’s house, ignoring the old couple queries goes straight to the fridge, gets a Coke, some candy and sat in their living room couch to eat and drink, the couple called their children and then the police. The children remember us and came to our door I went to pick him up at the same time that the police arrived. His behaviour was described as being in a trance, temporal Lobe seizures?

He wets his bedroom floor, Geneva Centre worker advises me to use behaviour modification technique, I used it for a solid year and at the end it was my fault for its failure.

October 1987, Danny being “stuck” to letters and numbers gets worse despite the teacher strong authority figure and worse, he bolts from his desk carrying a chair up to the window sill and try to throw it out the window, he is followed by a chorus of screams “Danny, don’t do that”, “Danny, Nooo!” I could see the fear in Danny’s eyes. I decided to follow Geneva Centre’s worker’s advice and find another placement his behaviour was getting out of hand and even though the teacher was excellent and have faith in Danny capability to learn, her screams and often use of angry negatives apparently aggravated Danny’s behaviour making him a danger to younger children. We didn’t suspect that his deterioration and bizarre behaviour could be the drugs after effect.

SIDE EFFECTS FROM THE USE OF OLDER NEUROLEPTICS: Thorazine and Stelazine

Obvious physical side effects: hives, fainting, hallucinations and petit mal seizures.

Not so obvious changes in his behaviour (1) Noises makes him lose control and could strike angrily, he tried to head butt me in a rage (2) Gets “stuck” writing letters and numbers or while typing, at the computer or playing ColecoVision, followed sometimes by an angry outburst (3) Tics or abnormal movements, he opens his mouth widely, his hands bends backwards raises his eyebrows very high for a mere second and back to coloring and no apparent recognition of his part of anything different happened to him (Darlene thinks he has Tourette’s Syndrome, two doctors agreed to disagree) (4) Rocking while being vocally noisy (5) Touches other people (6) Bizarre behaviour, tries to throw chair out of windows (7) “No” and “Don’t do it” are triggers that worsen “behaviours”(8) It is almost impossible to get him dress in the mornings (9) or to get him to the washroom. We stop going to Florida for that reason. (10) Impulsive behaviour: some fun mischievous behaviour like pulling the fire alarms or dumping pop corn or coke on unexpected movie-goers. (11) Paying unexpected visits to nearby houses. (12) When physically restrained Danny fights off, screams and bites. (13) We stopped taking Danny to restaurants, shopping or to the movies because of vocal noises, sudden noises followed by tantrums or getting up to run. It used to be that when Danny went to the movies his own private army of children surrounded him: siblings and kids from the neighbourhood, positioning strategically themselves in the front, besides and behind. His tantrums became unexpected and violent and the children were scared. In restaurants we would get him busy with his electronic toys, doing math and spelling, now we couldn’t, we were afraid that baby cries or the shrill voice of young child would trigger a tantrum. We shall include here his climbing roofs and running into the Subway. Finally, I should add that about the time he developed hives his skin became very sensitive that welts would rise at a strike or scratch, we could write his name on it and would stayed for a couple of hours.

June 1st 1988 Danny was 14 years old
Muki Baum, July 1988/ December 1989 as his behaviour became dangerous, with the help of Geneva Centre we decided to find another place, a Treatment Centre, we thought we found it in Muki Baum. At the beginning looked like everything was going fine, as time went by, Danny was more and more reluctant to go there, he will go and say “No, please” even when in car rides if I got close to the Treatment Centre he would say “No, please” and jumped in panic. A Muki Baum teacher told me that he was too smart to be there, that he could read, write, do math and that he could learn more things. Smiling, added, that Danny made the taxi drivers run for their cars. Then that Danny didn’t want to go to the washroom at the centre, when at home passed blood in the urine, we took him to emergency, doctors at the emergency couldn’t explained it, so she thought it was an urinary infection, she was mystified and thought Danny had hit his penis with something sharp. Soon news of attacks on the female teachers followed by meetings with administration where I was told that Danny would end up “in an institution, on sedatives and restraints”, that Danny was a “violent sexual pervert”. In another meeting we were told that if we wanted Danny to stay in the centre to put him on medication and sent us to a Psychiatrist who at the end didn’t share their opinion, so he was evicted and stayed home.

June 1st 1989 Danny was 15 years old. What was the problem? An engorged penis, apparently a normal hormonal change that terrified him enough to prevent him to go to the washroom and he was asking if it was normal what was happening to him.

Note: Priapism is a rare condition induced by many psychiatric drugs, can develop when ON and OFF the drugs. Involves prolonged painful erections, some cases requiring surgical intervention. As I repeat myself is cruel to treat Danny, a non verbal “autistic”, with drugs that exacerbate or worsen his condition.

From December 18, 1989 on he stayed home to April 10, 1990 when he was admitted to Kerry Place’s. On February 10, Danny suddenly bolted from his desk run passed me, run upstairs, passed his brother and out, on shorts, socks and shirt, onto the frozen roof through the skylight. After waiting 10 minutes and he wasn’t responding to my enticing, thinking that he got frozen to the ice I called 911. I asked the operator to send the firefighters and to try to get Danny down with their ladder and to please to come silently, “No, sirens, please”. Five minutes later at full speed, sirens at full wail, policemen and firefighters were at our door. I was trying to explain and the next moment one of the firefighters stuck his head through the skylight took Danny by surprise and he fell off the roof. A giant of a policeman carry him inside the living room waiting for the ambulance to come. It was an impressive display on our small living room was full with 13 policemen, firefighters and ambulance medics with all their regalia, no counting the neighbours who came to see if they could help and stayed.

The very next day, Rolf called to ask how I was doing in finding another placement for Danny I told him about Danny falling off the roof and our visits to a SS MacGuigan Secondary School and they not being prepared to take Danny. March 1990, In the meantime we tried again another medication we went to Dr. Hutchuel in Thornhill and Danny was given Mellaril, after being 3 weeks on it he developed Petit-mal seizures. I wouldn’t have known if an “episode” didn’t happened in the doctor’s office. Danny would slump on his seat; his eyes would go up, close them and back smiling in matter of one second. I was telling the Psychiatrist that Danny had developed another “autistic trick”, he turned to look at me and said “Mrs. Muller, that is not ‘an autistic trick’ is Petit-mal seizures”. Again his behaviour took a change for the worst, but none was the wiser. April 10th, 1990, Danny was admitted to Kerry’s Place. June 1st 1990 Danny was 16 years old and about two months there.


NOTE: after mistakenly stating that Danny run out to climb houses in the Summer of the 1982 at the age of 9 as I check the information I will update it