Starting a new school, and meeting new teachers, assistants, and friends is a big adjustment for any child, and it takes time to adapt. Every family wants their kids to feel good, thrive, and enjoy school. Meet Dominic, a seven-year-old boy who loves numbers and lego.
Dominic lives with his parents and brother. He loves numbers, letters, watches, clocks, and to build with lego. He has a unique memory for names, people, places, and dates, speaks two languages, and can understand English as well. He can read in all three languages proficiently.
”Dominic is kind and loving and has a great sense of humour.”
Dominic is kind and loving and has a great sense of humour. He enjoys spending time with adults and talking with them about life and interests. Also, he likes to learn about other people and their family lives.
Among his friends at his inclusive primary school, he is popular. After the first weeks of school, he began to show them a little more interest and now he spends more time with them. Dominic likes the school subjects and finishes his work quickly, so he gets extra tasks.
Speech- and physical therapy is regular on a weekly basis. When he was younger, he had occupational therapy as well every week. Dominic gets support from teachers, special education teachers, a social educator, and teaching assistants at school.
He doesn’t participate in any sports or hobbies after school at the moment and the family has been waiting for a support family or after school support for two years now. It is difficult to find someone for this job, and many families experience the same problem. His parents try to give each other some time for themselves, but both of their extended families live in another country, so it is not easy to find support.
Challenges with CHARGE syndrome combined with talents
Dominic has a facial nerve paralysis which mainly affects his facial appearance. He cannot close his right eye and needs eye drops several times a day. His vision is 6/12 in both eyes, which means that he can read or see things at a six-meter distance that a person with normal vision could see at a twelve-meter distance.
Dominic is sensitive to light, but he does not have coloboma. However, he was born with a heart condition called mitral regurgitation, which means a leak in the mitral valve in the heart. The family also recently discovered that he lacks a sense of smell but can still taste food. CHARGE syndrome has impacted his speech and both fine and gross motor skills. He is also diagnosed with autism and has hearing loss in his right ear due to the absence of a cochlea, so he uses hearing aids. This affects his balance.
”Despite these challenges, Dominic has exceptional talents for numbers, people, and things that interest him.”
Despite these challenges, Dominic has exceptional talents for numbers, people, and things that interest him. He speaks two languages and in addition can read in English. When using his first language, his vocabulary and understanding are better, and he uses 5–6-word sentences.
Dominic likes to repeat things a lot, and his language comprehension and communication are in constant progress. He used sign language till he was five years old, and it helped him a lot, but now he no longer uses signs.
Assistance in everyday life
Due to his hyperopia (farsightedness), Dominic wears glasses. When outdoors he also has filter glasses with a protective frame against the wind. For the time being, he does not need enlarged text or pictures, but the school knows what to do if this changes. The school has access to advisors at a national institute for blind and visually impaired and deafblind, who provide guidance on Dominic’s sensory functioning.
It is important to stay close to Dominic when speaking with him, ensuring eye contact and good acoustics. This facilitates the communication.
He has a designated contact person at the National Hearing and Speech Institute for adjustment and assistance at school.
Dominic’s balance is weak due to the lack of his cochlea. Earlier he used to wear a soft helmet outside for protection, but he does not need it anymore. He tends to stumble and fall easily and tires quickly. The use of extra time combined with good quality shoes are important for his comfort. For longer walks, he needs a pram or a bike.
Daily routine is important
Dominic is sensitive to both loud noises and light. He prefers routines and may find sudden changes challenging, such as when the teaching assistants cannot be with him due to illness or if the daily schedule changes. For a period of time, in the after-school program he enjoyed reading the same book every day, sitting on the same sofa.
”Dominic has excellent skills and memory on topics of interest and can do his daily activities independently.”
Dominic has excellent skills and memory on topics of interest and can do his daily activities independently. However, he prefers to do things his way. When he is in distress, the teachers may not always understand why this occurs.
Sometimes, too many changes coincide, creating a lack of control. One semester Dominic got both a new teacher, new teaching assistants, and new support staff. He needs time to get to know everyone and build trust with them.
Keeping him well-informed through spoken language, written information, or both, is a good strategy so that he knows in advance what to expect during the day. In kindergarten he and his class had a visual schedule and that has been used in primary school as well.
After school, Dominic is often tired and can have challenging behaviours. Sometimes he struggles to sleep which also affects his energy and well-being.
Different support systems
The support systems differ between kindergarten and primary school. Kindergartens often assign one teacher or teaching assistant to have the main responsibility for supporting a child during the day, which includes different types of therapy, organising meetings, sharing knowledge, and working with advisors. The team of teachers works together during the day with the children.
In primary school, a team of people provides support and works with the children during the day, including teachers, special education teachers, developmental therapists, and teaching assistants. In addition to this the children meet a lot of other persons during the week. Both systems have their advantages and disadvantages.
In situations where Dominic needs to relax, the teachers found it helpful to go to a quiet room with him before returning to class. They have also noticed differences in his energy levels during the day, and the week. He has more energy in the morning, and at the beginning of the week but is tired at the end of the day and the end of the week. This is taken into consideration when planning the week's schedule.
Relationships developed with time
Dominic has good relationships with the teachers, although he can become dependent on specific individuals and get upset when they are not around.
In the beginning, when his classmates wanted to play with him, he was not very interested. After the first semester this changed, he was more responsive and began to interact with them. He still struggles with group work sometimes which may be related to CHARGE syndrome or his autism diagnosis.
The teachers have tools to assist with social learning, but those are not always suitable due to communication challenges. Understanding Dominic's feelings and triggers is crucial for the teachers if he gets upset, and that understanding takes time.
During the first year, various situations would upset Dominic, which showed some potential triggers such as loud noises, group size, proximity, room acoustics, or if he was tired or hungry. Sometimes a class, that he usually enjoyed, could upset him but the teachers did not understand why.