Children with disabilities are one of the largest, educationally underserved youth in our country today. Even more staggering is the serious lack of regard for the educational needs of children that are facing life threatening and/or chronic illness. The education journey of young children often comes to a near halt when they are diagnosed with an illness or disease that leaves them unable to attend school for long periods of time, if not indefinitely. Even though the right to an education is mandated by federal guidelines, many children limited to a homebound or hospital setting face seemingly insurmountable roadblocks in accessing their basic right to an education.
Five years ago, my young daughters were diagnosed with a life threatening immune disease. They were each only 3 at the time. As we watched the effects of the disease unfold, it became obvious that my daughters would not be able to attend school; at least until medical science advanced enough to prevent the serious threat of even a common cold to my precious daughters. A common cold can take the lives of my children. We thought that, by facing the education challenges early on, we would be well equipped to begin the children in school, at home through the public schools homebound program, once they were kindergarten age. Little did we know that we began what would be a long, seemingly endless journey; one that would not have the outcome that we had predicted.
Having been disaster manager skilled in coping with some of the worst natural disasters one could face, I felt invincible. I believed that I was stronger than the system and that I would, without question, secure an education for my children that would meet their needs. Yet, now some 5 years later, I find myself no further along in the process than I was in the beginning, having surrendered to the system. After more than 2 years of working nearly full time learning special education law, the ins and outs of IDEA, the true meaning and limitations of “no child left behind”, I found myself throwing in the veritable towel, admitting defeat. The once invincible me, now felt that the problem was bigger than me; bigger than my daughters; and bigger than any federal law placed on the books to prevent just this from happening.
I am my daughters’ teacher; I am my daughters’ nurse; and I am my daughters’ mother. This is not a choice I made, rather one I was forced to make if I wanted my daughters to receive an education. I was, for all practical purposes, defeated. Like many other parents coping with the challenges of caring for a child with a life threatening or terminal illness, I made the choice that I needed to choose to spend my time with my daughters, rather than being locked in battle for a public education for them. Like many other parents, I realized that every moment with my daughters was precious and that every moment, every day, every month and every year that I dedicated to the fight for their education, was taking moments away from my relationship as their mother; a relationship that is priceless when you never know how long that will be.
Initially, I thought I was alone in my struggle to access and education for my chronically ill children, but this notion changed drastically during the past three years, after having the opportunity to meet and speak to other parents of children with chronic illness as well as foundations that work to find educational resources for medically homebound children. What I learned through these interactions was that we, as a family, are far from alone. I have sat through countless conversations, listening to parents tell me that they had abandoned the idea of educating their child with cancer. Like us, they decided that they did not want to spend the precious and numbered moments with their child away from their child fighting for their right to an education. It has been intensely disheartening to hear this from so many parents.
The most disturbing element of the fight for an education is the fact that our families are locked in so many battles: the financial battle to meet the soaring cost of medical care; the emotional fight to maintain a sense of family during a time that typically tears families apart; and for many, the daily struggle to keep our children healthy, often being a nurse to our children. It is simply unimaginable that we must now fight tooth and nail for the basic right of our child to have access to an education.
What are we teaching these children? Are we teaching them that, because they are sick or dying, they have no self worth? Are we teaching them that, because they have been forced to live with a chronic illness that they have no value in our society? When we, as parents, face roadblocks by surrendering to them are we teaching our children that our expectations of them have been lowered as a result of their diagnosis? Many children that are long term homebound are not terminal; rather their compromised immune systems or physical disabilities are so severe that they are not able to cope with attending school in a classical setting. For these children, there is every expectation that they will grow to become adults, fully capable of contributing to society. Molly, our 8 year old, she has decided that she will be the first female president; a goal that is certainly obtainable for her should she be given the tools to get there.
For our own family, we have dedicated an immense amount of energy and dug deep for the money to educate the children through homeschooling. We also realize that this is a choice that takes great dedication and energy, something many parents do not have when they spend every ounce of energy meeting all of the other requirements of caring for a child that is chronically ill. There is not a morning that I do not wake up and wish that I could just be a mother to my daughters, without the added stress of not only being a nurse to them, but also a teacher. It is very difficult for both parents and children to accept their parent in the many roles often required of a parent taking care of a child with chronic illness and the stress added to the relationship by this is disheartening.
Many serving the needs of disabled children recognize that many of these children use their intelligence as a coping mechanism to circumvent their illness or disability. A great number of disabled children are gifted in one or more academic areas, yet the focus on their disease or disability often precludes addressing their intellectual ability. It is imperative that, as a society, we recognize the potential of children facing the challenges of the requirement for a home based or hospital based education program, realizing the need to validate these children’s intellectual and creative strengths, nurturing them while accommodating the limitations of their disease or illness.
By looking beyond the notion that we must focus only on preserving or extending the life of our child, we integrate care of their physical needs with attention to meeting their intellectual needs helps in order to maintain self esteem, independence and provide a sense of normalcy. Nurturing success and achievement can help our children realize the importance of living with their illness, as opposed to allowing their illness to define them. By caring for these children's cognitive, social and emotional needs, children realize that the child’s success and achievement can become the focus, not their illness.
ALL children are entitled to an education. It is a BASIC human, civil right. For children that are long term homebound, this education must be complete, giving the child access to the world beyond the walls of their home as they grow physically, emotionally and intellectually.
