RARE Toolkits

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

ADVOCATING FOR YOUR CHILD WITH A RARE DISEASE AT THEIR SCHOOL
Perspectives

Parental Experiences

Marla Wessland, Noonan Syndrome

11-08-25_Library

“Many children with Noonan syndrome (NS) have learning disabilities but Sara, my daughter, does not have any that are significant enough to be noticed at school,” says Marla. She describes Sara as a quirky kid who excels in her academics but “marches to the beat of her own drummer.”

For several years, my daughter received physical, occupational, and speech/language therapies at school as a part of her IEP.  She no longer needs those services, but she now has a 504 plan that provides accommodations for some vision and GI issues. She has preferred seating, so she can see well in the classroom, and has access to the bathroom whenever she needs it.

Sara was diagnosed at about six months of age. Sara tested positive for a genetic mutation for Noonan that is present in about 50 percent of the people diagnosed with this syndrome. Over the years, Sara has had quite a few specialists in and out of her life. She sees an endocrinologist, ophthalmologist, gastroenterologist, orthopedist, and geneticist. She had support to help her gain weight from nutritionists and speech/language pathologists, as well as her gastroenterologist.

Sara’s Mother Shared Some Useful Tips for Parents:

• Get all the early intervention you can! They really can catch up with this extra help and the feeding support can be so helpful.
• Because there is so much variation in each child, if you give any information (articles, etc.) about your child’s condition to the school team, highlight the items that affect your child.
• Work with the school system for any IEP/504 accommodations. There are many things that can easily be done.
• Teach your child to advocate for her/himself. If there is a substitute teacher who isn’t aware of your child’s needs, he or she may need to advocate for themselves.

Vanessa Rashid, William's Syndrome

Vanessa's Daughter

Zhala (pronounced Jah-la) is an extremely friendly child and usually quite happy. She is much loved at school and is surely missed if she misses a day of school. In fact, her teacher described her as the “glue of the classroom” because she knows the name of every child, calls them by name, and greets each one.

Her school experience has been phenomenal. She is in typical classes and her therapists come into her class to administer therapy. “Math is her strongest subject, which is contrary to what children with William’s syndrome typically experience,” says Vanessa, Zhala’s mother. Reading comprehension is a top priority, as is strengthening her social skills, so that she has good solid friendships. “She is not isolated in any way,” says Vanessa who is very pleased at how her school team has supported her in the classroom.

Vanessa explains how the team has earned her trust. When Zhala’s eating didn’t go well on the first day of school, her case manager called home that very afternoon after receiving an email from Vanessa. They developed a communication notebook and started using it the very next day, and continued all the way through the end of the school year.

Zhala’s Mother Shared Some Useful Tips for Parents:

• An invaluable tool is a daily communication log, which highlights any issues or news in her school or home routines such as eating, behavior, or toileting.
• Consider seeing teachers daily. If that is not possible, try emailing or writing them frequently.
• Go into school with a good game plan, be open about significant concerns, and make sure concerns are addressed in a reasonable amount of time.
• Discuss issues that could be big problems, like sensitivity to sound. For example, they had to have a plan for fire drills because Zhala is so highly sensitive to noises that a fire drill would scare her tremendously.
• If something doesn’t feel right, be an advocate and don’t worry about being a complainer. Also, approach the school nurse with special health concerns and make sure the school has up-to-date contact information if there is ever an important non-emergency issue.
• Music can be so beneficial to help with cognitive skills. For example, Zhala’s teacher has had great success teaching math facts by singing them with Zhala. “Music is a great motivator and cognitive tool for lots of kids,” says Vanessa who has done a lot of reading on the topic.

Elisa Calderwood, Tuberous Sclerosis Complex

Sophia_Bridget

Sophia, who was diagnosed with Tuberous Sclerosis Complex (TSC) at 16 months of age, is in a regular classroom, has an IEP, and has paraprofessional support. In a regular classroom, Sophia gets to see how her peers act socially in many different environments. This approach has enabled Sophia to grow in many areas personally and socially.

At school and home, she uses an iPad and that helps with spelling and practicing writing. Sophia is quite social and seeks out certain people. She is included in regular class activities, and it works well when “everyone works together.”

Sometimes, Sophia gets frustrated when things don’t go as planned, and she has behaviors that might frighten other children, such as screaming when she is upset. This might particularly happen after a seizure. Her behavior can make it harder to get out in the community. As more supports are put in place, life gets easier for Sophia and those around her. For example, a behavior specialist has been visiting with Sophia’s family to teach everyone how to deal with the negative behaviors, keep people safe and provide strategies  to avoid or lessen these occurrences in the future. A weighted vest at school has also been a good sensory support for her. There is also a Seizure Action Plan in place that is supported by her medical community.

Sophia’s Mother Shared Some Useful Tips for Parents:

• It is important to remember that not everyone knows about TSC or how it affects your child.  I have learned over the years that educating others regarding TSC is a non-threatening approach.
• Talk with your school staff about changes, new ideas, and proposed plans. For example, having Sophia carry a big backpack full of supplies on an outing really would stigmatize her as no one else would have to carry a pack. Talking it though helped the team come up with acceptable alternatives.

Christine Brown, National PKU Alliance

2055

Connor and Kellen were diagnosed with phenylketonuria (PKU) at birth and require medical foods and a very restricted diet in protein to help them grow and develop normally. Both boys are in elementary school and part of their 504 plan is that the public school provides them with a hot lunch each day.

Each school will vary in what it provides in terms of meals or cafeteria food. Regulations that require schools to provide school lunches for children with special dietary needs differ from state to state. However, several federal regulations provide the legal basis for requiring schools to offer nutrition services to children with special needs.

In Connor and Kellen’s case, the school provides each boy with a hot lunch modified to be low in protein. I, their mother, am emailed the monthly lunch menu. I circle the fruits and limited vegetables the boys can eat and in what quantity. Then, the school provides a low protein food item that they specially order each day to supplement the boys’ meals. One cafeteria worker prepares their food, weighs and measures it and then serves it to the boys in the lunch line. Afterwards, the boys return their trays to the same worker, who then weighs each item food leftover, so that an accurate record can be emailed to me at the end of the day for effective management of their PKU.

Connor and Kellen’s Mother Shared Some Useful Tips for Parents:

• Get to know the Food Services Director and staff, and request that one worker be in charge of your child’s meal each day.
• Encourage food services staff and teachers to contact you about questions with your child’s diet.
• Provide the school with appropriate items that your child can have when there is a special celebration or birthday in the classroom so that your child has something to eat.
• Keep other appropriate snacks at school as necessary.
• Make sure there is a “no-swapping” rule in the classroom to prevent children from trading or sharing food.