Living with Autism
Friday, February 27, 2009 at 2:36pmI've just written this for several purposes - Firstly, to introduce Tristan to a new therapist we are about to try, and secondly, to prepare for another essay I'm eventually going to write, documenting our horrible experience with the special education system in our district. (And thirdly, for my own records + perspective).
I thought it might be worth posting for anyone interested in glimpsing what life is like with an autistic child. (Bearing in mind, every autistic child is different, and this is only one experience, not necessarily typical).
Tristan was officially diagnosed with PDD-NOS at age 3, which changed to "High Functioning Autism" by age 4. Between the ages of 2-3, his speech + language development was border-line delayed. He was not non-verbal - he had a few words and was very aware and connected to people and his surroundings, but he did not use words together in sentences to ask for things. He would always light up whenever an adult entered the room and clearly wanted to engage with adults, but peers he was not interested in - finding them irritating or boring. (He would either ignore children his own age, or he would push them over or pull toys away from them, etc).
However more than speech, what alerted me to the fact that something was "wrong" or "different" was his behavior, mood + sensitivities. For example, he was clearly interested in music at home (e.g. he would happily sit on my lap while I played the piano to him, he would request songs, sing, dance + clap to my songs, etc), but at the Mom+Tot music group classes, he would *not* sit on my lap, or sit still, or co-operate with the class at all. He would keep darting off to the corner of the room + spin around, head-butt the wall, climb on chairs, or run around the room - often giggling or screaming. He was so impossible in any sort of group class that 9 times out of 10, I would have to leave early, and eventually cancel our participation in the class. He would not even co-operate in tumbling classes - despite his love of physical activity + his emerging ability with basic gymnastics, he was not capable of waiting in line for his turn with the other kids. He could follow the teacher's demonstrations once it was his turn, but waiting in line, he would again run around the room, spinning, screaming, or causing disruption.
Starting pre-school was the first real road-block we came to. I had hoped that starting pre-school would somehow smooth out his idiosyncrasies and get him to settle down. I simply thought he would mature into it. But, he only lasted 1 week in a regular pre-school. He would not participate at all but would dart around the room like a wild animal, knocking down chairs + tables, throwing paint-brushes across the room, spilling bowls or baskets of toys + scattering them all over the floor, etc. He would only calm down once taken out of the classroom. He could then sit quietly or walk up and down the hall-way. One-one-one with an adult he was fine, and would engage + co-operate. But in a classroom he could not function.
The pre-school teacher thought he was "deaf" because he would not turn around or answer when his name was called. And because he did not speak in the classroom. But I knew his hearing was very sharp, and I knew he was selectively ignoring people. This was when we turned to recommended psychologists and got our first "diagnosis".
It was a huge relief when we discovered what autism + "sensory integration dysfunction" was, and having Tristan labeled as such was a relief, not a burden. (Infact, we did not want the initial label PDD-NOS, we wanted them to come out and just call it "autism"!) It meant we now knew what we were dealing with, why he was the way he was, and how to move forward and help him.
From the age of 3 1/2 onwards, Tristan entered ECE (Early Childhood Education) at the local public school, and private OT (Occupational Therapy) in LaGrange, a town about 15 minutes drive away. He made HUGE developmental strides there, and immediately started calming down, talking more, interacting more and getting over some of his obsessions. His 2 years there were really fabulous times.
However, starting Kindergarten at age 5 1/2 was a very difficult adjustment and was the start of many agonizingly painful adjustments + a gradual deterioration in his overall mood + functioning. At the start of Kindergarten, he was high-functioning enough to be fully integrated into main-stream school with a one-on-one aide, who at the time, seemed a good choice for him. While he continued to develop academically + verbally, (streaking ahead in math especially), he continued to struggle with behaviors, social interactions + moods.
1st grade + 2nd grade were getting tougher + tougher. Again, verbally + academically, he was developing amazingly well, but socially + behaviorally, he was failing. By the end of 2nd grade, school was a "disaster", culminating in complete + utter break-down by the beginning of 3rd grade. The school was forced to suspend him because his behaviors were so violent + disruptive, that they were officially "threatening his safety + the safety of the other children". The "behaviors" included throwing chairs + tables around the classroom, throwing toys or other objects at people, bolting out of the classroom + down the hall, running into other classrooms + causing havoc, running into the principle's office + breaking objects on the desk, pulling his pants down + exposing himself infront of entire classrooms, standing at classroom windows + exposing himself, touching other children's private parts, touching teacher's private parts, calling out obscenities to children + teachers, swearing, screaming, giggling + cackling hysterically.
I'm not going to go into all the failings of the school + administration, as this would take up 3 more hours (suffice it to say, his stability at school was not helped by the change of administration, cutting back of resources, complete changing of his team, including his aide, lack of communication, lack of consistency + lack of support). This will be another essay later!
Between September + December 2008, Tristan was at home, with no school to go to, and with just 2 hours of home tutoring provided by the district. His private tutor was ex
cellent, and he co-operated very well with her (just as he always does one-on-one with any patient, enthusiastic, engaging adult). But the rest of the time, he was very unstable + proceeded to wreck our home, bit by bit, in severe melt-downs EVERY DAY. He pulled down book-shelves numerous times, including one with our printer + scanner one day, breaking the scanner, but luckily not the printer (which somehow survived the fall!) He threw toys + objects around the house, he knocked over my plants, scattering mud all over the floor + breaking the plant pots, he swiped shelves, knocking photograph frames + ornaments on the floor, he emptied bowls of things on the floor, he would take baths + over-flow them all over the bathroom floor, creating leaks into the kitchen down below, etc, etc,.. Every day with him felt like living in a war zone, and we somehow survived, but constantly felt "on edge" waiting for the next eruption.The only way to stop him wrecking + destroying things was to grasp his arms behind his back + pin him down on the floor, during which time, he would violently kick, bite + head-butt, often managing to knock something over with his feet.
This is the same kid who is also capable of much feeling, affection, sympathy (especially towards me, his Dad, his sister + close adult friends), and capable at times of being incredibly thoughtful, philosophical, imaginative + creative. For example, he was recently able to think of Christmas presents to buy for his sister + Dad, and helped me choose them, buy them, wrap them, (with some prompting + help from me, but still co-operatively). etc. He sometimes engages so well with his sister, they are able to play reciprocal, imaginative games, where she can tell him what to do + he does it! He also sometimes likes to teach her things, e.g. he sits down at the dining room table + teaches her basic math, or how to make a paper airplane, or how to play a particular board game or computer game! He enjoys seeing her succeed at these things, and praises her, saying "Good job, Sophie - you can do it", etc.
He likes to ponder on what other people are thinking or feeling - he is especially fascinated by people, and is always trying to figure them out, as if he were an alien (or an "anthropologist on Mars"!) Infact, he thinks of himself as an alien, and has his own mythos worked out, e.g. he is from the planet "Zercury", and is a billion+99 years old, but has only lived on earth for 8 1/2 years, etc... He pretends he can regenerate when he dies into a new body, and he is currently on his 100th body! (He knows this is all fantasy, but acts it out constantly + likes other people to participate in his fantasy.)
When he is quiet and calm (best at night when I'm tucking him in), he will often ask deep questions such as, "Where do we go when we die? Do we become spirits? Can spirits see us? What is God like? What is Heaven? Why do we get diseases?" etc...
I've seen Tristan become moved by a sad story, e.g. when he watched "The Heffalump Movie" for the first time. When the baby heffalump gets trapped in the cage + is mis-understood, + mis-treated, Tristan began to cry, and ask why was everyone so mean to the poor heffalump, and why were they afraid of him?
This is the same kid who lov
es to torture bugs, pull their wings off, squash them, etc, and loves to "torture" his own stuffed animals, dolls + cars, playing games where he is the "evil wizard or alien" and is dissecting them + pulling their limbs off, etc. (And he clearly loves "torturing" and bullying Sophie at times, - he likes to make her feel powerless, so that he can feel more powerful himself).I think the two extremes - i.e. sensitivity to other people's feelings on the one hand, + a desire to "torture" people (or living creatures) on the other hand, comes from his extreme reaction to people's faces, expressions + emotions. He has always been obsessed with people's faces - they either fascinate him or irritate him extremely. - When he sees an expression, such as a big smile or an angry frown, or a hurt, sad face, he will often suddenly cariacature it, pulling his face into extreme contortions to mimic the face + using his whole body + arms to over-exaggerate it. This often sends him into a tail-spin of irritable manic twitchiness + he'll get himself worked up into a frenzy over it.
In January 2009, he started a new school called NCA (New Connections Academy) - a wonderful new school in Palatine, IL - the only school in the Chicagoland area dedicated to high-functioning autistic kids. He had to interview to get in - i.e. he had to prove he was academically advanced enough, had a high enough IQ + was capable of verbal interaction... He passed with flying colors, and was promoted to the higher grade level classroom after the first 3 weeks. He is doing 5th or even 6th grade level math + 3rd or 4th grade level spelling + reading. He is in a classroom with 3rd, 4th + 5th graders. He is getting one-on-one OT + counselling almost every day, and he gets a "sprinkling" of OT in the classroom throughout the day.
He is doing pretty well here - infact the first 3 weeks were great - he was calm, focused, on task + happy. But now, since being promoted to the higher grade level classroom, he is once again struggling with the same disruptive, dis-regulated behaviors. At least this time he is surrounded by staff who are highly trained, supportive, caring + understanding. There are 9 kids in the class + 4 staff members, all trained in autism. But he is having to be taken out several times a week for "melt-downs", although we are hoping that as he adjusts to this new class he will calm down again over the next few weeks.
In addition to his autism, he has been diagnosed with mild depression, anxiety + OCD, and we are not ruling out bi-polar disorder. He is on Prozac + Risperdal. (Low dosages).
Outside of school + academic talents, we have discovered Tristan has other talents - he is a VERY good gymnast, swimmer + rock climber. He has incredible upper body strength, thanks to his 5 years of OT + weight training!! This combined with his extreme flexibility + co-ordination means he can do just about all gymnastics routines with ease... E.g. he can climb up a rope super fast, he can do the parallel bars + hanging rings, pulling himself over with his arms, standing on his hands, etc, he can do running cartwheels, somersaults, etc. He is a VERY good trampoliner, and can do forward + backward somersautls in the air, etc... He has one-one-one private gymnastics coaching + is learning some great routines, and even honing the presentation skills of keeping his body in straight lines, finishing with arms up, hands pointed, etc. He is good at watching his coach + copying demonstrations. He is also a confident swimmer + with 2 summers of one-on-one swimming coaching, he learned some good strokes + can swim under-water with ease, dive down to the bottom + retrieve objects in the deep end, etc. Now, we have just joined a first-rate rock-climbing gym for him, and he can climb up to extremely high walls usually reserved for adults, with confidence + ease.
Also, he has recently begun drumming lessons with a one-on-one tutor, and is picking up the skills pretty easily, and has a good sense of rhythm. (We have bought a drum pad set for home practice!)
He even used to be good at Tae Kwondo + did classes for about 3 years + learned a number of routines there, although he reached a limit with this, and struggled with memorizing the sequences of movements, and when it came to doing partner combat routines, he could not co-operate well enough to progress to the next level. This was when we switched to gymnastics lessons instead - more individual + therefore more successful for him.
In our family, although we have had to make many major adjustments because of Tristan's behavior, limitations + difficulties, we have not stopped "living out lives", for example, we still make many trips on airplanes, especially to visit my family in England, and to visit Dave's family in Florida... Travelling is extremely hard work with Tristan, and involves making visual plans + schedules, etc, for Tristan beforehand, and preparing him for the trip, + bringing along many physical tools + props - sensory items, snacks, sketch pads, hand-held games, etc- a "survival kit" for getting through the journey... After many many trips, however, we know the routine now, and can manage it - not without some big hitches + exhaustion, but more or less...
The hardest part of living with Tristan is the unpredictability and chaos of dealing with his extreme melt-downs, violence, aggression, mood swings, anxiety, etc... However, because of his talents, skills, strengths + positive signs of sympathy, awareness + willingness to connect, I see much hope for him and our family for the future.
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