RARE Toolkits

Below is a list of all of our current RARE Toolkits.

ADVOCATING FOR YOUR CHILD WITH A RARE DISEASE AT THEIR SCHOOL
Meeting Individual Needs
Meeting Individual Needs

Children who have rare or undiagnosed conditions are members of neighborhood schools across the country. School can, and should, be a great place for everyone, including those with rare conditions.

Rare diseases can affect children differently, and children who have them can vary greatly in intelligence, behavior, medical issues, and educational needs. In this toolkit, we will offer general tips and strategies for children who have rare conditions that impact learning, whether diagnosed or undiagnosed. We will also describe specialized education supports and ways to work with your child’s school to ensure an effective partnership is developed.

Meeting Children's Individual Needs

The road to a diagnosis can be long and complex, and some children may never receive a specific diagnosis. Instead, they may have a general diagnosis like “global developmental delay.” A medical or genetic diagnosis may help open some doors for services and explain a constellation of symptoms and behaviors, but there does not have to be an official diagnosis in order to receive services, as long as the child meets eligibility requirements.

Testing Children’s Abilities

In order to ensure that a student has a comprehensive educational program, testing in the areas of each suspected disability is essential. If a specific diagnosis is made, it is important to become familiar with any cognitive and learning research that has been done to guide this process.

Learning Disabilities, Educational Testing, and Other Concerns
NYC School Psychologist J. David Carr explains the ins and outs of what happens if parents think their child has a learning disability, how to make sense of educational testing and other important information.

Not all areas of need are immediately obvious or typically tested by schools, and families should consider getting an independent assessment outside of the school. For either option, it is important to understand as much as possible the child’s condition and give input to the evaluation process. Some areas to consider when doing an evaluation include:

• Cognition;
• Academic Achievement;
• Executive Functioning;
• Adaptive/Daily Living Skills;
• Speech and Language;
• Fine/Gross Motor Abilities;
• Memory;
• Visual/Perceptual Skills; and
• Behavioral Concerns.

Whether or not a child has a specific diagnosis, it is important to have high learning expectations for all children with rare syndromes. Individualized, flexible, and appropriate educational strategies and supports are keys to success.

Schools need to understand that many children have more than one barrier to learning and that challenges have a compounding effect. For example, for a child with inadequate communication, a behavior may be perceived as “acting out” when in fact it is an attempt to express a need, pain, or another issue. It may be required, therefore, to be creative and employ different strategies in order to meet the individual needs.

How to Advocate for Your Child
Learn how to advocate for your child in school from Dr. Kimberly Williams in this Howcast video.

Here are some steps that you may take to ensure appropriate modifications are being made for your child.

• Track data over time to document educational growth;
• Keep a notebook at home and record the amount of extra time spent on school work outside of the school day;
• Keep records to document your child’s emotional well-being and whether there is a marked change;
• Record situations where services have not been delivered according to the special education support specifications (which are discussed further in the following sections); if, for example, therapy services are consistently cancelled or if promised services are sparsely provided, it is important to meet with the school; and
• Make sure teaching strategies being used are appropriate for the child. For example, if the child is already socially engaged, make sure the interventions are suited for someone who is socially engaged.

General Accommodations to Consider

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“Accommodations, even those that are quite simple to provide, can make a big difference in the quality of life for a student. For example, having short stature is common for those with Noonan syndrome, which my daughter has. Simple accommodations can allow those who are smaller than their peers to be more independent (e.g. a step stool at the sink) and perform to the best of their ability (e.g. seating that allows feet to be firmly on the floor for writing and other fine motor activities)."

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Marla Wessland

Parent of a Child with Noonan Syndrome

Marla’s full story on her daughter can be found within the Perspectives section at the end of this toolkit. While some children may need significant support, including special education, your child may need minor adjustments and strategies to regular education. Some examples are:

• Extended time on tests and assignments;
• Preferential seating;
• Reduced homework or classwork;
• Structured learning environment(s);
• Repeated or broken down instructions;
• Use of verbal/visual aids;
• Behavior management supports, strategies, and/or plans;
• Adjusted class schedules;
• Verbal tests;
• Use of assistive technology;
• Modified textbooks or audio/video tape materials;
• Consultation with special education staff;
• One-on-one tutor, aide or note taker;
• Alternative food choices;
• Additional class personnel; and
• A services coordinator to oversee program and modification.

When advocating for your child, it is important to share any specific conditions he or she may have, whether they be medical, learning, behavioral, eating, or any combination of these with appropriate people at school.

It is also important to note that state laws vary on special education rules and regulations, so you should always make sure to explore the policies of the state. States can add to federal regulations but they cannot eliminate or reduce them. They often have different specifics about what is required in the special education support.

This toolkit is sponsored by:

Ultragenyx

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