School and WAS

School and WAS

Starting a child with WAS at school, or changing schools, can be stressful for parents and for the children. Knowing the dedication that is needed needed to provide for the needs of their children, it can be difficult for parents to let go of their child and allow him to be in the care of someone other than themselves.  Children with WAS can be taught in a home school setting, a private or a public school depending on the choice that the parents make after consulting with their physicians.

How to Select a School

A good starting point is to meet with the Principal of the schools that you are interested in and gauge your comfort level, the comfort level of the school personnel and the level of care that they will be able to provide.  Schools that are willing to accept these children, usually readily express their support and desire to help.  In a public school system, exceptions may be made to accommodate the child in school that does not fall within the zoning areas.  A few additional criteria that may help make the difference in school selection are:

Having a school nurse at all times on campus, while not always possible, is a great resource and comfort.  A low student to teacher ratio provides more individual care, especially during the preschool and elementary school years.

How to make things easier for the child and for the school

Once the decision has been made as to the school that the child is going to attend, the next step is to help transition the child into the school and make things as smooth as possible for the child and for the school.  Due to their immunodeficiency and increased risk for bleeding, these children present unique challenges at school and it is helpful to address these challenges proactively.

As with any rare disorder, a good starting point is the education of school personnel about the disease and how it is affecting your child. Partnering with the school to meet the needs of the child and being open to changes and suggestions makes way for a pleasant experience for all concerned.  It is important to realize that ultimately everyone has the child's well being as a priority.  Occasionally, there can be concerns and misconceptions about "immunodeficiency" and it helps to reassure the staff that the child does not have HIV, that the problem is genetic and that it is the child who is susceptible to "catching" infections from others. 

It is ideal to form a school health care team consisting of the student, parents and school personnel.  This team approach helps foster a positive relationship between families and the schools and provides the best long term outcome.  In some cases, it may be better to involve the physician to facilitate communication between the family and school personnel.

Regular communication between school personnel and family is essential to identify individual needs of the child and hopefully prevent problems before they arise.

Taking care of a child with WAS in a classroom setting is an additional responsibility for the teacher and can be stressful.  Validating this and appreciating their efforts can go a long way to have smooth sailing through the year.

Particularly in the lower grades, it is a good idea to have the parent and the teacher meet with the students at the beginning of the school year and explain how your child is different and to discuss rules regarding norms of behavior around the child.  Some physicians may be willing to come in and talk with the students as well. 

Enlisting the help of the children themselves makes it a great way for them to work as a team to keep your child safe.  A good set of friends, who understand the child and support him goes a long way in keeping them happy and comfortable at school.

Teasing and bullying, which should be nipped in the bud is reduced when the children understand that there is a reason that the child is different.  Having a child with special needs in the classroom makes other children appreciate what they have and help them to be more understanding of people with needs.   Enlisting the help of the parents with a letter at the beginning of the year stating the child's problem and how they can help can reduce these incidents. 

Infection

Children with WAS, particularly children with Classic WAS can be more susceptible to infection, even while on IVIG and prophylactic antibiotics.  Schools are places where these children are exposed to and are at risk for catching infections.  A few things can be done to lower the risk of catching an infection and to allow early intervention if the child is ill.

• • Make sure that your child is up to date with all his immunizations.

  • Make sure that he is taking all the medication that is prescribed.

  • Encourage your child to follow good hand washing techniques.

  • Avoid putting objects in the mouth and touching the nose, eyes, face and mouth.

  • Good hand washing practices for all the children in the classroom is to be strongly encouraged and the teacher can institute this in the classroom.  Using a hand sanitizer when hand washing is not practical is an acceptable alternative.

  • Outbreaks of communicable diseases in the school, particularly chicken pox, measles, mumps, mono, meningitis, influenza and hepatitis should be reported to the parents at the earliest.   Parents are then aware and can take the steps for prevention and early treatment depending on the situation.

If the child expresses any signs of illness or if the teacher notices that the child is ill, it should be brought to the nurses attention immediately and parents must be contacted and informed.  Cuts and wounds should be cleaned, dressed, precautions against bleeding taken  and the parent notified.

Schools and Immunization

Patients with WAS can be seriously ill if they receive any live vaccine.  If a particular vaccine is required by state law, parents can present documentation from the child's physician that he is exempt from that vaccine.  Under no circumstances can a vaccine be given to a child without parental permission and parents should be notified of school wide immunizations. 

Injury Prevention

Once the long term goals are in place, it is time to attend to the minor details-taking care of the classroom, modifying it if necessary to help make it safe and a less restrictive environment for the child to learn and grown in.

Plans for everyday care and emergency management can be set in place with a focus on prevention and early intervention of injuries and infections.  While, on one hand the safety and well being of the child is of paramount importance, it is equally important to allow the child to integrate as much as possible into all class activities.  

PE and recess are the two times at school where the child may not be able to participate in a regular fashion.  These are the times when there is an increased possibility of injuring themselves or being hurt accidentally by other children.  Alternate activities  (such as reading in the library, using a computer, playing board games) or modifications can be made at these times so the child does not feel left out. 

The guidelines listed in the section on bleeding, i.e.  letters that the teachers should have, helmets, emergency care kits, avoidance of slip and trip hazards etc apply to the school environment as well.  With some advance planning and creativity, the school environment can be made safer for children with WAS.

Absences, testing and assignments

Scheduling a meeting at the beginning of each school year allows to assess the needs of the child allows the best possible transition for the child and for the school.  The child's physician may have to be involved in the meeting with the consent of the parent.

As children with WAS have a wide range in the severity of their symptoms,  their needs may vary even over the course of a year and a single plan does not fit all. 

Often, they have more absences than a normal child would due to illnesses, doctors visits etc.  Tests and assignments may have to be rescheduled to allow for doctor visits, absences due to illness etc.  Children receiving IVIG may have side effects, necessitating a couple of days of absence each month.  Some children may need more frequent meals or snacks to ensure adequate caloric intake for weight gain.  They may need to see the nurse on a regular basis to receive medications.

Educational Rights under the Federal Law

Several Federal Laws are in place to allow for children with disabiltities to have receive an education equal to their peers.  Listed are some of the existent laws.

Section 504 of the Rehabilitation Act protects the rights of the individuals with disabilities in schools that receive federal financial assistance. It allows students with disabilities to be given an equal opportunity to participate in academic, nonacademic and extracurricular activities. 

IDEA- Individuals with Disabilities Education Act is the special education law.  This ensures that children ages 3-22 with a disability will have available appropriate free public education if they qualify.

FERPA

       The Family Educational Rights and Privacy Act is a law that protects the privacy of the student education records, applying to         schools that obtain federal assistance.

Educational and Healthcare Plans

Children with WAS may qualify for educational and healthcare plans at school that allow for children with disabilities to participate in school activities and to accommodate their special needs. A plan for special needs children such as a 

     504 Plan or an IEP (Individualized Education Plan)  should be set up to ensure  that their needs are met.

IHP - Individualized Health Care Plan is a written plan specifically for the school setting and outlines the managemnet of health care with significant health conditions.  This can be a part of a 504 plan or an IEP.

Emergency Care Plan  (ECP):   This is a part of the the IHP.  This plan ensures that a plan of action is in place should an emergency related to the students medical condition occurs.  The ECP includes whom to call and the procedures to be followed in the event of an emergency.tn  Sample forms are available on the AAP website.

School and Psychological Concerns

Patients with WAS have a hidden disability.  They look well to others, but the child and parents are aware that a minor infection can be a cause for a serious illness, or a seemingly minor injury could end up with a major bleed.

These children can have psychological burdens from the disease and all attempts should be made to allow the child to lead a balanced life and help them develop a good sense of self.  It is best to keep them focused on what they "can do" versus allowing them to dwell upon what they "cannot do".  Even though the list of dont's seem overwhelming, the reality is that these children can do many things and it is possible, with a little creativity and understanding, to keep them engaged and happy by giving them alternatives to many activities.  Over time this will translate into positive behavior in the child , allowing them to be happy and productive as they transition to the teenage years and adulthood. 

Socialization and the formation of friendships can be affected and extra effort on the part of the parents and the teachers may be needed to encourage and foster good friendships.  As part of regular communication, the social and emotional needs and the current condition of the patient can be addressed.  It is important that the school personnel pay close attention to signs of anxiety, nervousness, depression in the child and let the parents know. This team approach between the school and the parents in the care of the child allows for early recognition of problems allowing timely interventions.

For a Comprehensive Guide to School Care of the Immunodeficient Child - IDF School Guide is an excellent Resource for parents and the school on children with Immunodeficiency. 

For details on Prevention and Management of Bleeding,  and Management of Infection please refer to the corresponding areas in this section. 

For a guide to Immunization please see the Immunization section.

Back to top                                                                                                                  > Next Section: Gene Therapy