Whether your child is entering school for the first time or the ninth year, you will probably ask, “What do I do now?” Hypothalamic Hamartoma continues to impact almost every area of life. So, no matter when you get that first call from a teacher or daycare provider, the search for answers start again. Children/Adults with HH typically experience seizures, sometimes-cognitive impairment, and emotional/behavioral difficulties. How are these special needs met in school?
With increased knowledge comes awareness. As a result, we have seen an increase in the number of children under the age of 5 years old being diagnosed earlier. Therefore the need for early intervention is clear. However, no one can anticipate what services will be needed if any at all. The presence of an HH has many symptoms that involve cognitive and emotional development. With this knowledge in mind the need to explore early development services is important.
Early intervention can begin as soon as there is an identified need. There are hospitals such as Long Island Jewish Medical Center, New Hyde Park, NY, that provide cognitive and developmental interventions for infants and toddlers. Depending on the age of your toddler developmental preschool maybe appropriate. Check with local school districts to verify if a program is offered.
Ready to start school? At some point this will or has already happened. What will this experience bring? For those parents that are already here, the stories vary just like our kids. Most HH kids exhibit some learning differences. In addition, families report behavioral and socialization concerns. Some kids start out life on track with no obvious delays. Parents report that as seizure activity increases and medications are introduced, cognitive delays, emotional and behavioral concerns increase.
When enrolling kids in school it is important to provide a complete medical history, however there may be some parents that will choose not to disclose. This decision is as personal as any other decision made on the behalf of your child. Should the time come when parents decide that there are concerns, they can disclose at that time.
The following is meant to be a general summary of the process towards Special Education Services. This will hopefully help guide parents through the school years. Educational guidelines outside of the Unites States will be different, please contact individual educational agencies.
What happens if my child needs help? Parents have reported getting that first phone call notifying them that there maybe some concerns. In most schools the educational staff will call a meeting and discuss children that seem to stand out in their classrooms. Teachers identify learning difficulties and/or behavioral concerns that are current (e.g. difficulty holding crayon or pencil, unable to follow simple directions, restless, screaming out, distracted easily, etc.) These issues and behaviors will vary as in every other aspect of HH. Interventions should be put in place to assist with the learning issues or changing behaviors. Each school district has its’ own process for assessing the needs of its’ students.
School teams generally consist of the teacher, school psychologist, nurse, social worker, principal, and parents. In addition to these team members at times parent/child advocates have been invited to provide additional support. During the meeting all issues and concerns for the child are presented. Then a determination is made by the team as to how to proceed. Should more testing be completed? Who will complete the testing? Is the child eligible for special education? What services will be provided? This may require academic, cognitive, developmental, social and emotional testing in addition to medical evaluations. The school psychologist will conduct this testing. Testing will analyze the child’s current educational performance and specific instructional needs in math, reading, spelling and language. Parents can choose to have some of these test conducted outside of the school setting for a second opinion. The final report may examine medical, social, psychological, speech, occupational and physical therapy and other areas. During this process, parents have reported feeling a variety of emotions including, frustration, confusion, intimidation, anger and more. Once they gain a greater understanding of the process and become aware of their parental rights through --IDEA Part B, Procedural Safeguards (provided by individual state), these feelings diminish.
Eligibility for special education services within the United States is covered under the Federal Law (IDEA), Individuals with Disabilities Education Act (www.ed.gov/offices/OSERS/IDEA). This law provides special education programs and services for persons with disabilities help them succeed in school. The criteria for special education services are predetermined. After testing has been completed, there are some children that may qualify for some educational accommodations however not enough at that time to require an IEP. In some States this type of educational accommodation may be captured under a 504 plan. A 504 plan outlines and provides additional assistance for a child not identified as requiring an IEP. Once your child has been found eligible for (SPED) special education services, an (IEP) Individualized Education Program meeting will be called to develop short range and long-range educational goals based on the child’s needs.
The IEP meeting will include members of the school team and are held yearly. The purpose of the meeting is to create a legal document identifying and outlining your child’s current educational needs. Again parents have the right to invite a family member, friend, or parent advocate to the meeting to assist in obtaining a better understanding of the process. The IEP process can create frustration and conflict between parents and the school system. At times parents and schools are not on the same level. The school may recognize concerns early, however, parents may feel a problem does not exist. They feel the child will outgrow any of the difficulties. At this point the process will stall if parents are not convinced of the child’s needs. No part of an IEP can be implemented without parent approval. If both are on the same level, the process will go forward.
Written goals should be reasonable and attainable by the child in realistic time frame. Some of the related services included in IEP goals may be:
- Speech-language, audiology
- Psychological
- Recreation
- Social work services
- Counseling, including rehabilitation counseling
- Orientation and mobility services
- Medical (diagnostic and evaluation)
- Sign language - or oral interpreter
- Psychotherapy
- Transportation
- One–to-one instructional aide
- Art therapy
- Technological devices such as special computers for talking and writing
- Nursing care
Remember the purpose is for the child to be successful. IEP meetings must be held annually, however a meeting can be reconvened at anytime should a team member see a need. During these school years there may be times when both sides will agree and disagree, there for it is important for parents to obtain a copy of each IEP completed as well as any other additional documents pertaining to your child’s education. These documents as well as the IEP process will follow your child throughout their educational lifetime. As the child matures into late teens, the IEP process will continue to develop based on needs that may now include vocational training and plans for adulthood.
To provide additional assistance to parents going through this process, here are some good resources:
- "Negotiating the Special Education Maze” by Winifred Anderson, Stephen Chitwood, Deidre Hayden
- “The Complete IEP Guide “How to Advocate for Your Special Ed Child by Attorney Lawrence M. Siegel
- “The Early Intervention Dictionary” By Jeanine G. Coleman, M.Ed
- Clearing House on Disability Information Office of Special Education and Rehabilitative Services (www.ed.gov/about/offices/list/osers/codi.html)
- The Children Defense Fund (www.childrensdefense.org)
- Epilepsy Foundation of America (www.efa.org)
School should be a positive experience for any child. To ensure that the educational experience of our HH kids is positive it is important that within each country regardless of the process and rules, parents must become familiar with their parental rights as well as the rights of the child. With in the United States, it is the (IDEA-Part B) Procedural Safeguards) that can be a wealth of support for all. HH parents have been called pushy parents for many reasons; this is just another one of the many things we must fight for.