I get a lot of questions from individuals asking me what quantifies a child with special needs? Are all Russell-Silver Syndrome children special needs children? Those are two very good questions.
Anyone who does research on the internet will find a myriad of definitions of special needs. According to the Wikipedia site: https://en.wikipedia.org/wiki/Special_needs, “In the USA, special needs is a term used in clinical diagnostic and functional development to describe individuals who require assistance for disabilities that may be medical, mental, or psychological.”
It has been my experience that many people term the word disabilities as a physical limitation that precludes that individual to function at a normal level in the “normal” world. But, just as there are a spectrum of severity ranges of chronic illnesses – such as in the case with Autism – there are varying degrees of disability that more often than not, constitute the need for the term special needs. As in the case of mental disabilities – just because we can’t “see” the disability – doesn’t mean it doesn’t exist. Having a disability “label” – such as special needs is not necessarily naked to the eye – yet can be a very important label for long-term health successes.
Why is this label so important? Because, as a caretaker for an individual that requires medical assistance above and beyond the normal realm of healthcare requirements – the caretaker will require the understanding of their rights and responsibilities as needed for that special needs individual to ensure adequate care. Examples of adequate care may or may not include health care / insurance coverage for said individual – i.e., physical therapies, additional testing above and beyond the norm, specialized medications and non-traditional treatment, special education requirements, and even costs related to medical specialists, to name a few.
See healthcare resources for special needs:
Okay, so we prefer not to have a label on our child. And, certainly – I personally do not elaborate on the fact that my son has special needs. At this time in his life – I refer less and less as my child having special needs – as the level of healthcare maintenance has significantly decreased. But, when he was younger – it wasn’t only a reality – it was a necessity for optimal health care as well as his educational needs.
So, does an RSS child have special needs? Some do. Some don’t. Some may. Some may not. We termed Ian as a special needs child. In a school of approximately 300, there was one child with a g-tube. Ian. Not only was it necessary for the staff of the school to be trained on the management / care of the tube during school hours, special documentation (IEP and/or IHP) was required to facilitate specific needs surrounding his g-tube and feedings during a normal school day. Obviously, tube feedings were normal for Ian – but, they were not the norm in a classroom setting.
Physical therapies, teams of medical specialists and ongoing physician appointments, and countless hospital stays (which eventually affected his participation – or lack thereof – in school) – all constituted the need for the “label” – special needs. In Ian’s case – he required assistance – above and beyond – that which is required by a “normal” child.
Again, the special needs term is very crucial in the spectrum of insurance purposes – getting access to appropriately skilled physician teams, medical supplies, and required treatment options that were required for Ian’s level of care. In many cases, if your child is not given an appropriate diagnosis or related “label” – he/she may not get the services he needs. For instance, when Ian was first diagnosed with Russell-Silver Syndrome – insurance denied our requests for a supplemental nutritional source called Nutren, Jr. As this was an enteral based feeding supplement (enteral meaning g-tube feedings) and Ian was actually “drinking” his volitionally (by mouth) – he was denied coverage.
So, it was up to me to demand coverage by challenging the insurance company and insisting that it was a major requirement to the success of Ian’s health maintenance. Since Russell-Silver Syndrome is a rare illness and not very understood in the medical community – it was necessary to reiterate his level of special needs.
I encourage all parents who are dealing with a child with a chronic illness to step back from the apparent and so-called labeling as a negative connotation. It’s all about perception and the basis for which that label is represented – not about how others view the situation.