As a parent of a child with complex health needs, I am left here yet again feeling very sorry for myself–and my child–at this time of year. This is the second year in a row that my four-year-old child with multiple disabilities does not have a school to attend. And I will explain why.
Usually, people will ask if I have tried working with the school district. Yes, as a matter of fact, indeed I have. However, this issue is more complex than you might have ever taken the time to think about.
Many people have a typically functioning child. Their children can defend themselves somewhat against any oncoming danger or threat (another child, an object, a slippery floor, something really dirty or disgusting, or something unsafe). Their children can report back to them if something unusual happened that day. If they felt unsafe. If they felt ignored. If someone hurt them. If someone spoke unkindly to them. My child cannot.
A typically functioning child could use the restroom like the other children, and wash their own hands. My child cannot. He relies on someone to make sure his diaper stays clean and dry. And that his surroundings are clean, and germ-free. A small cold for a typical child, could send my immune-compromised child into RSV or pneumonia in a matter of moments. My child can die, if he were to contract these types of illnesses. His fragile body cannot fight them off. He stays very clean and safe at home. But what will happen when he is subjected to all of those other children?
A typically functioning child could see the world around them, and want to engage in it because of its stimulating sights to be seen. And to know exactly what is happening around them. My child cannot. He needs alternative methods of engagement and entertainment, that require audio-stimulation as an alternative. Someone needs to provide that to him individually, if his environment is not naturally providing the right kind, or enough for him.
A typically functioning child could eat breakfast and lunch at school. They could bring a fork or a spoon to their mouth. They could eat enough to sustain themselves throughout their day. My child cannot. My child is tube-fed. His feeding is one of the most important parts of his care. The wrong person caring for him could cause him to dramatically lose all of the progress he has made in weight gains for the past two years, while being carefully monitored by myself and occasional nurses.
A typically functioning child could introduce themselves to others. Could engage with others. Could be excited about the same interactive activities in the classroom and outdoors, as the others. My child cannot. He does not like the same things that everybody else likes. He does not understand what they are doing. He does not want to do most of the things they will be doing. He loves music, and toys that make noise. and motion. Swinging. Rocking. Being pushed in his wheelchair/stroller. He requires alternative goals and alternative activities.
A typically functioning child could get through the school day with a small nap, or no nap at all by the time they are 4 years old. My child cannot. He requires a longer nap in his day, and a place to relax and do that if needed. He might need an alternative room with sensory items to soothe him if he gets overstimulated. His brain is not normal. It is damaged. And it gets very overwhelmed. He needs constant supervision from someone who understands these things about him. And knows what to do and how to respond. He cannot emotionally regulate. And he cannot protect himself.
And yet the schools seem to think that:
2. He does not require school or services at all (they waitlisted him for preschool services, to avoid dealing with me since I don’t comply)
The problem is, that by not having a 1:1 nurse/aide who is specifically assigned to his care and documented as a reality in his IEP, there is definitely an opportunity for something very bad to happen to my child. And we have already been down this road. The “bad thing” already happened. He was injured at birth, because of negligent care. And I refuse to allow anyone to be negligent in his care ever again.
So, meanwhile, while the egocentric world is focused on their typical children, their back to school photos, their school supplies, clothing, sports activities, and busy/active/healthy lives–me and my son will sit here. Confined to our home. Until someone can convince me that they can help me adequately to keep my child cared for and safe.
Writer, Student, and Mom
Liz Shields is a mother of an awesome 4-year-old cerebral palsy warrior boy. She lives in Lincoln, Nebraska but she has also lived in California and Arizona for a few years. She is passionate about human services work, holistic health, natural healing, and corrections reentry/prison ministry. She is currently pursuing her MS in Clinical Counseling at Bellevue University and looks forward to serving diverse populations in her future work. You can read more at her new blog (Differently)abled.
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