Reaching potential – supporting children through transition

From the moment we are born we are learning, developing and achieving. The sky is the limit and each of us goes in a different direction depending on many factors both nature and nurture.

If we are fulfilling our potential, we can be confident, happy, satisfied, enthusiastic and driven but what happens if there is a disconnect between our potential and our achievements?

For children born with medical difficulties or disability, those who acquire a medical condition or a traumatic injury, or even those who do not get the correct input, support or opportunities, their potential can feel out of reach.

In my experience this can be very frustrating, demeaning and often very upsetting for a child or young person and their families. I have always felt my role as a Case Manager is to understand potential and need and then to work with all involved to put in place the best possible support to change that frustration into determination, to change the feeling of failure to a feeling of success, and to change feeling unable to being ‘differently abled.’

Delivering the right support

In order to know what support is required first we must work out what is restricting, limiting, or getting in the way of success. Most importantly we must understand what success feels like and looks like to the individual, not what we think it should or should not look like.

I have found many barriers, both physical, emotional and situational, that have led to children and young people being unable to reach their potential.

Like in many aspects of life, the physical barriers are often easier to identify but often require funding to overcome. These may be overcoming physical disability with the use of equipment, extra support or resources, extra therapy and intervention, more opportunities or extra time.

With clear understanding, excellent assessment, research and funding, some of these barriers can be relatively easily conquered – however, the emotional or situational barriers can be more complex to identify and, in some instances, a real challenge to overcome.

Potential knows no limits

I have often met parents who have been led (by professionals they have met) to believe that the successes their child might achieve are likely to be low, and they have been encouraged not to have too many hopes and expectations; this breaks my heart, especially if the child is very young.

I have also met so many parents who have proudly watched their child take steps and say, “the doctors said he would never walk.” They have tears in their eyes as they tell me about a text message that they received from their non-verbal child to say they are hungry, as they then go on to explain that they were told their child will never talk, and don’t get me started on even the most complex young person having a say in their care!

Walking does not mean without aids in the way the textbook says we should, talking is not the only way to communicate and consent.

Joy or unhappiness can be relayed in many ways, you just have to look and listen and understand. It is not for us to decide on potential, limits and success, it is for us as professionals to help identify realistic goals, put in place the best possible support and opportunities and as one dad said to me “to allow hope to live.”

The results can be phenomenal

Belle, is a remarkable 18-year-old young lady who has had to overcome many of these barriers.

Belle has Dystonic Cerebral Palsy; she is non-verbal and wheelchair dependent BUT none of these aspects define her. What makes her so remarkable is her determination, her drive and her cheeky wit.

Many people in Belle’s life have tried to put a ceiling on her potential and success, but her parents have always listened to her, believed in her and when necessary advocated for her. This has enabled Belle to be heard, she has grown up being encouraged to make choices for herself and to have a strong and loud voice.

She has developed a strong understanding of her own needs and, if given time, support and equipment, she is perfectly able to set her own goals, accept her own actions and consequences and achieve many successes.

These have included many opportunities to speak at events, being on TV, achieving GCSEs, attending University and assisting the companies that develop the software she uses.

Often when a person first meets Belle, they make assumptions based on the way they do things. Belle may use an eye gaze computer to communicate and record her work, and she may use head switches to independently drive her chair, but she is very able and is surpassing her perceived potential – a true example of the sky’s the limit.

Transition can be tough – for the whole family

It is often at times of transition and change that things can be at their toughest, but these times can also provide a great opportunity to move the goalposts.

Transition can mean many things, a new home or school, from inpatient to outpatient, from dependent to independent, from parent only care to a team of carers.

It is my role as a Case Manager to support families through these transitions and to help identify what the change means for them and their child/young person. The transition is not only felt by the child or young person but can also be extremely stressful for the parents.

We are often led and, if done correctly, we should be supported to work through the transitions that society impose on us – starting school, moving to secondary school, moving home etc., but it is often at times of independent transition when the gap between a child with additional needs and their peer group can feel enormous.

When a young child learns to ride a bike without stabilisers, when an older child begins having sleepovers with friends, when a teenager is allowed to go out without a parent; these are times that a child with extra needs can feel left out, less than able or unsuccessful.

Continuing to push the boundaries of what’s possible

In order to support anyone through a transition the most important thing is time. If we identify the transition in advance we can put in place the support, equipment, social stories, visits, opportunities or whatever else is required to make that transition as smooth as possible.

When the systems we have work, and the professionals involved understand and support the family appropriately, transition can be a stepping stone to further success and raising the level of potential.

We now live in a society that is supposed to ensure we are all treated equally and have equal opportunities, but for those with disability or extra needs life can feel like a long-distance hurdles race.

I have often heard that it feels like every stage or transition is ‘another battle,’ ‘another fight’ and another feeling of ‘starting again’ and having to “train” the professionals.

It should not be like this; we must have standardised ideas and assessments, but we must always remember we are all individuals, we are all different. We must be flexible in what we can offer and provide and work out what is needed for each individual child or young person to succeed.

Each transition should be bespoke and focus on the individual’s abilities, then the sky really is the limit.

Author: ILS Case Manager, Robyn Ingham

This article was also published on www.nrtimes.co.uk on 7th April 2022