Have you noticed that when you search for the term “special needs,” the main focus tends to be typically on autism and attention deficit hyperactivity disorder? Those conditions certainly deserve a concentrated focus and increased awareness, but there are so many special needs that extend well beyond those two widely known areas. And there are so many parents with children who are sincerely desperate for information and support for their child’s specific special needs.
Remember, autism was not always widely known; it was through the huge effort of the many moms and dads, doctors and teachers, researchers and advocates, who stood up and demanded that more research be done, more money be allocated for, and more information become available for children with autism.
The same needs to be done for the many diseases, conditions, and afflictions of all children so every child can get the services, treatment, and accommodations necessary for her particular circumstance.
What is a special need?
A special need is required when a diagnosis in a child requires special assistance in order to help that child be the best she can be, physically, mentally, and emotionally. There are medical issues (chronic and congenital), developmental delays, behavioral issues, mental issues, and more. It is impossible to list all, but here are just some special-need conditions (some you may not have heard of) that warrant treatment and services at home, in school, and beyond:
Medical-chronic: Diabetes, thyroid disease (such as Hashimoto’s Disease, Graves’ Disease) and other endocrine disorders, allergies, rheumatoid arthritis, fibromyalgia, Ehlers-Danlos syndrome (a connective tissue disorder), Postural Orthostatic Tachycardia Syndrome (which mainly affects both cardiovascular and neurologic systems, but can affect gastrointestinal and other systems).
Medical-congenital: auditory and visual issues.
Developmental delays: speech and social issues.
Behavioral and mental: Pediatric Acute-onset Neuropsychiatric Syndrome and Pediatric autoimmune neuropsychiatric disorders associated with Streptococcal infections (which stems from a medical issue but affects behavior), anxiety, depression, and obsessive-compulsive disorder.
It’s important to keep in mind that medical issues sometimes present as behavioral problems because the child may be experiencing physical and debilitating symptoms that she cannot effectively communicate.
What to request at school
If your child is living with a diagnosed disability, she is entitled to receive help at school. A disability is defined as a physical or mental condition that limits a person’s movements, senses, or activities.
A 504 Plan is often used for medical needs. It helps children whose medical issues affect their learning, but do not require specialized learning programs. For example, a parent of a child with diabetes may request that the child has free access to the bathroom, can leave the classroom for blood sugar checks, can drink water freely in class, etc. A doctor, the parents, and the school typically create a 504 for the individual child based on her specific needs. Once filled out, the school is supposed to meet with the family to outline exactly what will be done.
An individualized education plan is a special education plan for what a child with learning disabilities will receive, and provides individualized special education and related services to meet the needs of the particular child.
It cannot be said enough: if your child requires special services, you must advocate for her. In many instances, the services will not come easily to you. Some schools will do their best to accommodate your child, but many will not.
It is a sad truth.
Even when parents do advocate for their child, they are often met with opposition, whether it is due to a staff that is uninformed or simply unwilling to put in the extra effort. But it is not legal for them to do so.
The Individuals with Disabilities Education Act is a federal law, which ensures that students with a disability are provided with Free Appropriate Public Education, which is tailored to their individual needs. It also gives parents the right to be part of their child’s education team.
It is never fun to confront an unwilling administration or teacher, but as a parent advocating for a child who cannot fight for herself, it has to be done. Stick to the facts, and date and record every meeting, phone call, and e-mail. Learn what your rights are and then fight like hell.