A Hidden Life

It is a hidden world. A need to know thing. Not the sort of thing which can easily be slipped in conversation. Of course, there is nothing wrong with it and there is a lot of it about. But unless you have someone with a disability in your life, it is probably something that you rarely think about.

As a primary teacher, I have had a number of pupils in my class with individual needs with needed to be met. I’ve had a number of children in my class with moderate learning difficulties, and one child who had limited speech and required the use of a wheelchair.

Yet, catering for their needs in class was only a shadow of what it is like to care for a disabled child as a parent. Meeting their educational needs for the school day is one thing, but taking care of their lives all the time is a very different prospect.

I have two sons and they both have severe special needs. In this article, I hope to raise your awareness of the often unseen world of caring for children with complex needs, as someone who has sat on both sides of a parents’ evening table, you might be better able to understand what happens away from school, but with the large caveat that I have a sample size of two.

First, a little background, remembering that I am describing the symptoms, and not the children, both of whom are happy and a delight:

My eldest son, aged 11, has cerebral palsy which impacts his motor skills. He is able to walk for short periods unsteadily but unaided. He is pre-verbal and communicates via a few Makaton gestures and picture cards. He has microcephaly (a small head circumference), severe learning difficulties and autism. He also has sensory issues meaning that he often gets anxious and is sick if there are loud noises or strong smells.

My youngest son, aged 7, has fewer issues. His motor skills are immature, but he is fully mobile. He also has learning difficulties and autism, but he can speak with a limited number of basic phrases. To continue the magazine theme of transition, he is currently moving to the same school as his brother to better meet his needs.

Besides the obvious perks of continuous and ever-present cBeebies, there are many things that, in my experience, you should know about parents caring for children with severe special needs. Often parents will appear autonomous and independent, but these are a few insights that may help you understand and help the whole family.

Time

Simple tasks can take a lot longer when you have to do them for someone else. Dressing, feeding, toileting add extra time to the morning routine for school and hours of physio exercises each night need to be factored in. Teachers can help by understanding these constraints. Teachers should accept that a ‘quick word’ at the classroom door isn’t always possible when one needs to rush off to deal with a rejected breakfast (as I had to just this morning), yet I would ask teachers to be flexible for events like parents evening, as arranging specialist child care can be difficult.

Teachers must also realise that families with a disabled child will often be intimately involved with health services and specialists. There are appointments for physiotherapists, occupational therapists, speech and language therapists, specialists for various bits of anatomy, consultants for the other bits. This doesn’t only take time and vast amounts of paperwork, but it is often the case that the parent is the liaison between all the agencies. Professionals move on and case histories must be told from the beginning afresh. Anything that the teacher can do to smooth the collaboration between professionals, whether educational or for health care, makes life a lot easier.

Communication

It is common to hear parents suggest that their child says little more than grunts about what they do in school, but is a situation where the child is not able to say what they have been doing and state their needs and wants clearly, communication between the school and home becomes vitally important.

No matter how good a school is at communicating with its community, there is always room for improvement. In the past, a communication book was the main method of day to day messages to and from school. But this can be time-consuming for both the school and parents. What has made a huge difference this year is the school using a Piota App (see right) to make communication smoother in both directions.

Enable

My children are told ‘no’ a lot. No, you can’t go to the bouncy castle with other children. No, you can’t play sports with the other children. Thankfully this is rare, but it does happen. As teachers we are enablers. We give our pupils the means, skills and opportunities they need to thrive. Make sure this extends to children with special needs by looking for ways to enable them to participate, rather than reasons for why they can’t. Naturally, safety is paramount but exhausted the possibilities first before saying no.

Ultimately, all parents want their children to be happy. For my children it is the only thing I want, so the last thing I would request is that you bring a little joy into the lives of the children you know and teach. It will spread far beyond the classroom walls.

This article originally appeared in the free June 2016 edition of  UKEdMagazine – Click here to view.

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