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The School Experience and the Child With Skeletal Dysplasia: Tips for Parents

Lorraine Montuori, LMSW, LCSW
Kathryn O. and Alan C. Greenberg Center for Skeletal Dysplasias

School is an important part of everyone’s life. Learning the basics of language, grammar, math and history is the foundation of school, but the experience is much more. Students learn social skills, make friends, learn about their areas of interests and begin to form their identities beyond their families and homes.

Starting school, or entering a new school, can be both exciting and worrisome. Kids worry about being accepted, making friends, getting around the school without getting lost – fitting in. For someone with a skeletal dysplasia, these anxieties are no different. However, due to physical characteristics associated with skeletal dysplasias, it can be more immediately obvious where potential problems may occur.

For a student with a skeletal dysplasia, it is best to ascertain the right amount of accommodation or adaptive changes which will give the student the optimal environment to do well academically without leaving them feeling singled out from their peers. It is a practical instinct for a parent to want to protect their child and make things easy but that isn’t always realistic. School begins the process of how a family helps to prepare their child with a skeletal dysplasia to manage physical obstacles and challenging situations beyond the family’s home.

Getting Started

Schedule a tour of the school before your child starts attending class (even if it is a change of school in the same school district where your child has already been registered). Contact the school principal or guidance counselor not only to request a tour but also to introduce yourself to these key people. Your child can only benefit from a positive relationship between you and the school staff.

Questions to Ask School Staff

  • Have you had other students with special needs?
  • Have you had other students with a skeletal dysplasia?
  • Have you had other students who have used wheelchairs?
  • What is your policy about bullying?
  • How does the school manage physical education for students with orthopedic issues?
  • In an emergency, what plan does the school have to assist your child to get out of the building safely in the event that the nearest exit may not be the exit your child is able to physically negotiate?

Physical Needs, Building Configuration

  • Points of entry – Are there steps? Handrails? A ramp entrance?
  • Is there a school elevator? If one exists, does the student need a staff member to assist them with use of the elevator? If the student can use the elevator without a staff member, is there a key? Are the buttons to operate the elevator at a height your child can push or is a pointer stick needed?
  • Bathrooms – Are there any toilets and sinks that are at accessible height for your child? Are they close to your child’s classroom? Can a step stool be available in the restroom closest to your child’s classroom, if needed?
  • Lunchroom – Can your child physically carry a tray of food? Table height and seating that will work for your child? Is staff available to assist?
  • Moving from class to class – Can your child have a few extra minutes to move from class, if needed? Chairs, table, desks should be available in each room that work for your child’s physical needs.
  • Lockers and coat storage – Is the locker a good height for your child? If it has a key or combination lock, does your child have the manual dexterity to work it properly?
  • Transportation – If bus transportation is necessary for your child, consider how your child can get physically on and off the bus. Bus transportation can also become an issue for school trips/outings.

Individualized Education

Individualized educational programs (IEPs) are specifically designed to arrange needed services and supports that reasonably provide students with special needs the same opportunity to meet educational goals as their peers. However, simply having a documented condition is not enough to be provided services; showing how that condition impacts the student’s education is the key point. There is a varying array of conditions and situations that meet criteria for IEPs:

  • Physical disabilities
  • Learning disabilities
  • Vision, hearing, speech/language impairment
  • Behavioral issues; ADHD (attention deficit hyperactivity disorder)
  • Developmental delay

Ultimately, it is a group process of involving several school staff members and the parent(s) that determines the need for, and the specifics of, an IEP. IEPs can be changed as needed but most are reviewed/updated annually as the student moves into a new grade. As the most significant word is individualized, each plan is constructed with matching specific services with the specific needs of your child. However, some of the services that can be arranged via the IEP process are:

  • Rehab services (physical therapy, occupational therapy, speech therapy)
  • Transportation
  • Activities that student can participate with peers
  • Need for a paraprofessional/aide
  • Medical, nursing services
  • Physical equipment (step stools, chairs, desk, etc.)
  • Need for extra time to get from class to class
  • Need for extra time when test taking
  • Bathrooms
  • Emergency planning

It is important to remember that not all schools are mandated to follow federal or state/local guidelines for students with special needs. Provisions apply primarily to:

  • Students with disabilities in public schools
  • Students who are placed in private schools by their public school district or public agency because their local public school district cannot provide them a Free Appropriate Public Education (FAPE) as mandated by the Individuals with Disabilities Education Act (IDEA).

Students with disabilities who are placed by their families in private schools, religious schools, charter schools or who are home schooled, may not receive the same scope of services that they would have in public school or they may not receive any services at all.

My Child’s Dysplasia

What is important for the school staff to know about how your child’s dysplasia impacts daily activities that are school related?

  • Explain how being short statured can be challenging at school: reaching sinks and water fountains, toileting, being out of the sight field of taller students.
  • Explain how the size and shape of your child’s hands affects dexterity, handwriting and computer skills.
  • Explain how, due to the number of medical specialists that provide care for your child, that your child may have more absences due to medical appointments but that you will gladly provide a note from each specialist indicating that the appointment was kept on the day your child missed part or all of the school day.
  • Explain how your child may have associated vision, hearing or speech issues with the dysplasia.
  • Explain how, due to orthopedic issues, activities that involve walking can be physically challenging and make it difficult for your child to keep up with classmates.
  • Explain how your child is to be treated like students who are the same chronological age – not like students who may be the same size.

Some parents feel it is valuable to send a written letter to the school each year that can be distributed to the teacher and parents of classmates explaining that their child has a skeletal dysplasia and providing an educational opportunity about living with a skeletal dysplasia. Other parents may feel that this singles out their child in a negative manner. Parental preference is the standard here but please include your child in the discussion of the value of sending a letter or not sending a letter. Even if you decide to do something that your child is unhappy about, explain to your child why you arrived at the decision you did.

Family Language

It is important to educate school staff on words that are acceptable and not acceptable with respect to your child’s skeletal dysplasia. Ideally, these are words and expressions that are used comfortably in your home. It is also important for your child to have an ease with dealing with questions that may come from classmates, schoolmates and school staff. There is a big difference between how these questions are answered and how your child deals with being asked these questions. As the parent, you play a pivotal role in this. If you want your child to answer questions in a manner that provides information/understanding, then practice this with your child. If you would prefer that your child not have to discuss their condition or why they are “different,” then provide them with an answer that they can easily and confidently reply when the situation presents itself. It is important to let school staff know about trigger words – the “M” word, “little baby,” etc. – that are never acceptable.

Bullying

Every parent worries about this happening to their child. It is, unfortunately, a common experience for most people over the course of their lives. For a child with a dysplasia, parents worry about bullying as a more immediate possibility because of the obvious “target” potential related to their child’s physical appearance. While bullying can occur anywhere, school is a setting that has high capacity for bullying to occur. Ask the school staff about the school’s policy for how bullying is handled. Find out if there is a school mandate to educate students about how bullying is damaging. However, your family should be discussing ways that prepare your child (and siblings) on how to handle unexpected questions, rudeness and hurtful comments. Helping children with how to handle stressful situations allows them to understand that while they may not have control over how others respond to them, they have control over how they respond to the circumstances.

Just Like Everyone Else, But…

The goal is to find the balance of having your child’s school experience be just like that of other classmates while realistically addressing any special needs your child may have. Services and resources should facilitate your child’s ability to participate like everyone else, not to isolate your child. Consider what will help your child keep up academically with classmates. Think about what will provide safety for your child at school but not to the extent of “bubble wrapping” your child. Remember that school is a place where your child learns not only academically but socially. This is where children begin to see who they are apart from their families and negotiate new experiences. Not each day at school will be wonderful, but the overall experience should be.

 

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