To get a glimpse in the life of young people with autism and their caretakers we spoke with Gabriela Plopeanu, the founder of Crystal Children and mother of Radu and Robert, twin brothers diagnosed with autism spectrum disorder. Radu and Robert are 20 years old. Robert is a 2rd year university student, currently doing a year abroad in Seoul, South Korea. Radu is diagnosed with 1st degree handicap. He is non verbal and he will need assistance for the rest of his life.
How does a normal day look like for a child with ASD?
They create rituals and if something prevents them from following those rituals they have tantrums. As a parent or caretaker you have to adapt and be patient with them.
When the boys were young I had to change several kindergartens because the educators did not know how to handle them.
First thing Radu does when he wakes up in the morning is to start his computer, he's organizing his desk, updating his movie/music lists.
After he goes to the bathroom to shower and brushhis teeth. Then he comes to have breakfast: the habitualcup of tea and 2 sandwiches.
In the meantime I prepare his snack for the daycare center and get myself ready for work.
Every morning he makes his bed, organizes his room and prepares his bag for the center with his phones + external battery, his folders, lists, etc. Then we leave together. I drop him off at the CrystalChildren therapy Center and I go to work. He spends the whole day there.In the evening I pick him up and we go home.
Everyday they do different things and each one of these young people has a personalized plan because each one of them has different needs. The goal is to help them become more autonomous, to take care of the space they live in, maintain it.
At the center he cannot use his electronic devices, he has to participate in the program.
2 times a week they go to the swimming pool. We have a partnership with the municipality to give them free access to theswimming pool. They go with all the therapists. They do aqua aerobic. They need to move, movement is essential for them. Radu learned how to swim when he wasyoung. The other young people in his group came to the center very stiff withlimited mobility.
In the evening when I pick him up I ask himwhat does he want to do. When he collaborated and worked well at the center heexpects his reward. His reward is usually a bottle of ice tea. At home he hasdinner and then spends the rest of the evening at his computer. He considersthis free time and the time at the therapy center his "work".
In his "free time" after"work" he enjoys creating logos, categorizing movies, artists, makingmusic playlists.
He likes a lot if different music depending onhis mood. He knows i like '80s rock and he created a special playlist for me.
The Differences Between The Two Brothers.
When they were little up to 3 years old there weren’t many differences. Both of them we non-verbal. Radu was making some Arabian sounds and Robert Asian sounding noises.
There were not at all interested in communicating.
In time we started seeing the difference between the 2 boys.Robert was more extroverted, he seemed happier. Radu seemed to be always upset and more of an introvert and serious.
At 4 years old Robert’s kindergarten teacher alerted me to the fact that he could read. Whenever someone came to visit even if they brought lots of sweets he was only interested in newspapers. He wanted to read, letters fascinated him.
They never asked for help or for the things they wanted.
I had to observe them and figure out from their behaviorwhat they wanted. In the beginning it was frustrating but then I gave in andlet them discover the world in their own way.
When Radu discovered the letters he started writing on thewalls. I let him do it until he filled up the walls up to the ceiling; he hadto climb on chairs and furniture. He then moved to paper.
As they started to grow the two boys went on their separateways. Radu had a shadow from the very beginning. It was very hard to convincehis teacher and the school that Radu needed extra assistance, someone next tohim constantly to help him with school, the shadow. Finally with the help of anorganization the school has been coerced to accept Radu’s shadow.
Robert did not need a shadow. He was very happy to startschool and learn new things. Unfortunately our education system is filled withpeople that do not have the calling to be a teacher. Robert ended up havingthis kind of teachers.
He was always happy walking with the encyclopedia in hisarms, happy to go to school and learn new things. Because he was different theother children treated him like a weird person and bullied him. Robert becamethe victim of the group.
I got him a mobile phone and told him to call me every timehe needed me. I realized that the teacher did not understand that she has toplay the mediator role.
His escape was in the library. He made friends with thelibrarian lady. Being surrounded by books was heaven for him. He went to thelibrary every break to escape the bulling of his classmates. They were throwingchewing gum at him and tossing his books.
Robert was not upset and he did not blame the otherchildren. We was upset and disappointedon the adults that did not mediate the situation.
Later, on at the end of secondary school, the classmatest hat tormented him this whole time apologized for their behavior in theyearbook. This act had a huge positive impact on Robert.
The bulling he suffered early on left a mark on Robert making him afraid of people.
In the last year of primary school both boys had some ABA therapy sessions with Michelle (a trained therapist sent by FOR Children).Michelle trained all the staff at Crystal Children in the ABA therapy method.
After the ABA sessions something clicked for the boys. It accelerated their learning and development.
At the end of primary school I took the boys to a psychologist for an evaluation.
Radu had to repeat the last year of primary school in order not to have gaps in his knowledge. Robert on the other hand moved on to middle school. The psychologist recommended not separating them but I did not want to stunt Robert’s growth.
When Robert started middle school his school schedule beganin the afternoon. I began to train him to go to school by himself with the bus(public transport not school bus). The bus would take him from a stop close tothe house and leave him in front of the school.
Robert would not go in the bus if it was crowded, even nowhe prefers to wait than to take the bus when it is busy.
He created his own schedule considering the rush hours whenthe bus was busy. He would go to school with one or 2 hours in advance just toavoid a crowded bus. He wouldn’t mind waiting at school. Same on the way back,he would either wait or walk home.
Separating the two brothers turned out to be the rightchoice since Radu also had an amazing development. He ended up having an wonderful4th grade teacher and 2 shadow students (they would take turns) thatwould help him a lot. All his new classmates as well as the parents welcomed himwarmly in the class.
In the 5th grade Radu had fortune to have a verygood Romanian language teacher that took interest in him. She often made anexample of his ability to learn grammar. Since grammar is logical and havingthe ABA techniques under his belt it came naturally for Radu to learn it.
At the end of middle school, before high school every childin Romania has to go through the National Evaluation, a test that evaluatesyour level of knowledge of the past 4 years of study.
Radu did not benefit from any special treatment when doingthis exam. He had to go through it the same as all the other children withoutdisabilities. Radu is has first degree of disability. He was only allowed tohave his shadow during the exam in order to motivate him to write.
He did well on the exam and he moved on to the art highschool to deepen his knowledge and ability of painting and drawing.
Robert in the meantime took the National Evaluation examwith very high grades and entered the best high school in the city studyingmath and computer science.
He always wanted to study biology and in the 2ndyear of high school moved in a different class with a Chemistry-Biologyprofile.
He always was the first in class
He finished high school with one of the highest grades andhe wanted to go to university in a different city.
Initially he would have wanted to continue with biology andstudy silviculture (forestry), then he was thinking of biology-chemistry.
For a while he wanted to study languages. I told him that hecould learn languages without having this as a major at university. Becoming alanguage professor would not be his favorite profession considering he cannotdeal very well with large groups of people and crowded places.
I went with him to a psychology teacher to do some tests and help him chose a profession and his next studies.
This professor just came up with a series of tests for themathematical memory. After he took the test the results show that just 5% ofthe population have the same type of mathematical memory such as Robert. Theprofessor recommended Robert to make the most of his abilities by working inthe banking sector - econometrics or research.
This advice helped Robert search for the right university.One year before the admission Robert participated in a contest and came out onthe first places. With the results from this contest and his high school gradeshe was immediately admitted to the university in Cluj.
The university in Cluj has an office for students withdisabilities ran by a psychologist that had been also involved in differentkind of actions geared towards autistic children/young people. I wrote an emailto her explaining Robert’s case and Robert was given a room in a dorm close touniversity to avoid going through busy traffic with the public transport.
I am encouraging Robert to speak freely and openly with me.
Robert did a lot of psychotherapy after he suffered frombullying in primary school. I tried to find a therapist that would sub as amale role model since their father was not present in their lives. When Ifinally found someone, his sessions had a huge impact on Robert, they helpedhim open up.
Radu in the meantime went to the art highschool. He had agood time at the highschool. Only in the beginning some of the professors weresurprised and did not know how to handle Radu, but since he is a gentle youngman and he has always had a shadow at school they learn how to work together.
Radu has a sense of color. The professors appreciated hisability to choose and blends colors on the canvas.
Radu graduated high school last year and now is attendingevery day the Crystal Children therapy center.
Robert is currently studying in Seoul, South Korea. In thesummer of 2019 he will have graduated university.
How did he end up going to Korea?
Eversince he was a little boy he was fascinated bylanguages. Whenever we would go to out shopping, Radu was attracted by musicand Robert by books. He was always buying dictionaries. His first fascinationwas Japanese, then Chinese, which he abandoned quickly, and then Korean. Robert has several Korean artists he likes and he listens also to Korean music.
Can you tell us a bit about Radu’s health problems?
Radu has had some health problems due to the fact that hehas some specific food preferences.
Last year I took Radu to the hospital because he developedkidney stones.
Autistic children and young people cannot express pain. I had to become a keen observer of mychildren. I noticed he had fever and that he was sitting in bed curled up. Iasked him where it hurts. He showed me his lower back. I called a friend doctorfriend specialized in urology and first thing next morning I took him to thehospital.
The doctors ran some tests and discovered some kidney stonesand an inflammation of the kidney membrane. We had to check in to the hospitalfor one day, the time it took to do all the tests. Subsequently Radu receivedtreatment and got better. I keep a close eye on him to prevent similarsituations from happening.
What role plays therapy in the development of children withASD, in helping them lead and independent life?
Therapy plays a fundamental rode.
For example if Radu would have had access to ABA therapy since early childhood he would now be much more independent. I can see it now with the children that had the same level of disability as Radu but started early on with therapy they can go to school by themselves at 10 years old.
Even now at 20 years old I can still see improvements in Radu’s condition especially in speech, which is undeveloped. Radu has no issues with his intellect, his biggest problem is communication, being able to express himself.
The greatest problem of people with autism is the fact that they are not conscious of themselves, they are not in touch with their bodies.They are detached from this aspect.
Swimming helps them feel their body. Equine therapy helps a lot as well because horses have a lot of patience and they give an immediate response to your behavior and emotional state. They act as a mirror of yourself. In the case of autistic children and young people equine therapy canhelp then create emotional bonds, concentrate, communicate and get in touchwith their bodies.
Aba Therapy helps each one of them,, through theircustomized therapy plan understand their environment; it helps them createtheir own place in the environment.
Do they have friends?
Robert left to Seoul with 5 other students from his university but with different majors. He became good friends with these other students as well as with other international students.
When he was in high school I taught him how to make jokes and how to understand basic body language signals.
Radu is very good friends with all the other 8 young people that are going to the therapy center with him.
With the help of therapy the 2 boys succeed in creating human connections and building friendships.
How did you cope with it?
I did not have a choice. I realised early on that my life would never be as I imagined. The only thing left for me to do was to start building my life.
When you have 2 young children completely dependent on you,you have no time to run into a corner and start crying, you have to deal with the situation and make the most of it for their sake.