What you need to know
It is important to have HIGH LEARNING EXPECTATIONS for children who have Tuberous Sclerosis. Encourage use of the core educational curriculum and modify it in order to meet the individual needs of the child.
Although some children with TSC have significant problems such as epilepsy and significant learning disabilities, many children have no symptoms in the classroom. The condition may impact the child’s ability to learn, his/her behavior, and relationships. It is important to have HIGH EXPECTATIONS for learning for children who have TSC. TSC experts recommend that children with TSC have a thorough neuropsychological evaluation at time of diagnosis so early intervention can start.
Neuropsychological challenges often present in writing, reading, spelling, and arithmetic. Children often work well with one-on-one assistance in highly structured environments. Tasks can be broken into simple steps and instructions repeated over short periods. Behavior and learning issues may be a red flag for changes in tumor growth and seizure activity in the brain.
In adolescence, the following may be appropriate:
- A vocational assessment noting cognitive strengths and challenges
- Teaching adaptive behavior and daily living skills.
Executive control challenges
- Executive control skills are needed for purposeful, goal-oriented activity. They play a role in a child’s intellectual development, academic achievement, personality, social skills, relationships, and communication with others.
- May have difficulty with working memory, planning, organization, and complex problem solving.
- These difficulties affect all areas of learning.
- Some differences are subtle.
- Because of planning and organization difficulties, starting an action may be challenging.
- Children may be overwhelmed by projects. They may be described as inflexible and concrete thinkers.
Learning, attention, and memory challenges
- They may have problems sustaining attention and switching tasks.
- Abstract language and concepts may be difficult to grasp.
- They may not understand or use metaphors.
- Instructions may be heard but not retained long enough for action. May have difficulty with integration skills, working memory, and episodic memory problems.
Early signs may include difficulty with:
- Moving to the rhythm of music
- Remembering content of stories
- Understanding left to right
- Understanding visual spatial concepts
- Coordination (skipping is hard)
- Using correct words or reversing words when speaking
- Writing letters, words, and/or numbers (reversals)
- Proof reading their own written work
- Understanding time
- Understanding seasons
The inability to understand the meaning of numbers or use math principles to solve problems is called dyscalculia. When a child has TSC involvement in the language and visual process centers of the brain, dyscalculia can occur.
Early signs may be difficulty with any of the following:
- Understanding numbers and quantities
- Understanding addition, subtraction, multiplication, division, abstract concepts (algebra)
- Making change
- Handling money
- Recognizing patterns
- Understanding days, weeks, months, and time
- Lining up numbers on page
- Telling time
A learning disability that affects written expression and difficulty in processing spoken language is called dysgraphia. Individuals with TSC have visual-spatial difficulties and struggle to organize letters, numbers, and words on a line or page. They may also have language processing difficulties.
Early signs may be difficulty with:
- Writing or forming letter shapes
- Being consistent with spacing between words and letters
- Stamina when writing even short assignments
- Writing assignments (refusals, reluctance)
- Drawing or coloring
- Holding pencil grip or using appropriate pressure on pencil point
- Staying on lines when cutting with scissors
- Getting thoughts on paper (older students)
- There are individuals with TS who have no intellectual or communication challenges.
- Receptive language is usually good. However, some individuals have difficulty using interactive language for social communication.
- Word retrieval challenges can cause problems with expressive language.
What you can do
- Individuals with speech and motor issues often benefit from speech and occupational therapy.
- Promote language understanding by using simple short sentences, visual prompts, and pictures.
- Use a child’s experiences and interests to engage child in learning.
- Allow extra time, repeat directions, provide lesson summaries, and/or record lesson so child can listen again.
- To promote language development:
- Provide ample time for responding
- Increase self-confidence by calling on them when they know the answer
- Encourage child to repeat the questions before responding
- Allow a child time to rehearse and respond
- Help with organization.
- Present information in concrete manner.
- Use manipulatives to show concepts.Simplify verbal information.
- Explain concepts clearly.
- Provide visual cues and instructions.
- Repeat information.
- Use positive reinforcement.
- Ask child to repeat instructions. Help the child find a starting point, especially on complex tasks. They often have a hard time with multiple step tasks and lose track of what they are doing.
- Select relevant task goals.
- Use a calendar to track important events.
- Help them develop a means to solve complex problems.
- Monitor and evaluate behavior and emotions.
- Help organize common needs at school and at home. For example, have a place for all things, use different colored notebooks for different subjects, etc.
- Modify copying. For example, provide a copy of teacher’s or other student’s notes.
- Provide a simple overview or summary before lessons.
- Provide clear tests that are as simple as possible with only a few problems on a page. Graph paper may help, especially in math.
- Use lined paper to help place responses.
- Allow extra time on work.
- Practice tracing shapes and copying pictures.
- Provide feedback to help awareness of mistakes.
- Use verbal descriptions to reinforce visual information.
- Practice folding and cutting with scissors.
- May have difficulty matching shapes and sizes. Puzzles may be challenging.
- Occupational and physical therapy may be helpful
- Visual instruction may work better than verbal
- Limit the amount of written homework
- Use manipulatives (Legos, play dough
- Practice cutting
- Allow longer time to write
- Write on every other line
- Allow tracing
- Early identification and intervention
- RTI (response to intervention) program
- Assistive technology (calculator)
- Use music to teach math facts
- Use pictures for word problems
- Color code math problems (red= subtraction, green= addition)
- Use manipulatives or number charts
- Use graph paper to keep numbers in line
- Assess curriculum to determine what part(s) will help the student reach their potential
- Students often can learn basic math concepts (telling time, counting money, etc.) but may have difficulty learning algebra and geometry.
- Use computer for writing assignments
- Provide occupational therapy
- Use a tape recorder to record ideas and organize thoughts
- Have a peer take notes
- Test orally
- Minimize writing assignments
- Do not have students “slow down.” This causes them to get stuck on the details for writing and they may lose their train of thought.
Information comes from the Children's Tumor Foundation. Please see the website for additional information.
You may want additional information about your child’s disability, early intervention, school services, therapy, local policies, transportation, and much more. Every state in the USA has at least one Parent Training and Information Center (PTI) to offer families just this kind of information. To find your state’s center, go to the Center for Parent Information and Resources.