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The Many Hats of CVI Parents (and Carers) - By Heidi Zec

Updated: Feb 3, 2020

Luka and Heidi

Our son, Luka, had a tumultuous start to life in NICU, and we were lucky to be supported by fantastic doctors and therapists through our first months. It was around six months of age that we first began to notice something was amiss with his vision (I will detail our story in a future blog). After some investigation, we received a diagnosis of likely CVI, and while I was glad to have this answer, my natural response was “So… Now what?”

Initially, the answer was not clear. I’m still amazed that I had never heard of CVI, which is the leading cause of vision impairment in children in developed countries, and I was even more amazed that many of the health professionals around me had never heard of it, either.

So I set myself to work to learn about Luka’s condition, what I could do to help, and to find others who could help us, too.

The Many Hats of CVI Parents (and Carers)

While I am still learning about CVI, I have found I can be of use by wearing many hats, and I want to share just some of these with you in the hope that you may also identify with and wear them:

The many hats of CVI parents and carers

1. The Expert

I am far from a medical expert; however I definitely consider myself a “Luka Expert”.

YOU know your child best, and your knowledge can be incredibly helpful to doctors and therapists in identifying behaviours, patterns and emerging skills. I learnt to observe and document Luka’s behaviour, even filming at times of concern and celebration. This has allowed me to work closely with doctors and therapists to investigate (and rule out) other conditions and has given me a beautiful visual diary to celebrate our achievements along the way.

2. The Student

A Very Wise Lady told me to “read, read and read some more”. I will try to live up to her advice.

Read widely, casting your net across medical journals, Australian and international websites and books, and also connect with other parents and therapists. Don’t be scared to ask a question or seek an opinion, as even Very Important People can be surprisingly friendly and open. Through reading and learning I have gained practical knowledge and also felt more comfortable questioning Luka’s team on the best way forward.

3. The Networker

Choosing a great team is one of the most important things you can do for your child, and once you have done this – nurture them.

Share resources, schedule visits with two therapists at once if this works for you, and encourage them to connect. It is incredible what a team of very clever people can achieve when they are working together.

I’ve been lucky enough to learn from people in both Australia and the UK and am humbled by how generous they are with their time, and how open they are to learn from each other. Collaboration between therapists and specialists has been crucial in making adjustments to Luka’s program to allow for his specific needs and help him achieve his goals.

4. The Teacher

In learning from your therapists, you will become a highly competent Physiotherapist, Occupational Therapist, Speech Therapist, CVI Specialist and so on….

Of course, I am exaggerating. The point is, by watching closely, practicing and asking questions, you can implement strategies even when your therapist isn’t there.

Remember to go back to basics when your little one is learning new skills. For example, when learning how to reach, I went back to Luka’s early visual preferences by presenting a favourite object in his preferred visual field, in a clutter and noise-free environment with appropriate lighting. Once he began to master this skill, I added complexity slowly, using patience and lots of praise.

5. The Cheerleader

Perhaps the most important and enjoyable hat is to be the cheerleader. Think like Mary Poppins:

In every job that must be done

There is an element of fun

You find the fun and snap!

The job's a game

(A Spoonful of Sugar – Julie Andrews)

You and your child can enjoy your time together while learning by pitching activities at the right level, at the right time. If you need a break – take it. Read a favourite story, dance, have tickle session or listen to a favourite song… you can always try again later.

When you make things fun, you will both WANT to learn and practice new skills.

In Conclusion

Parents and carers wear many hats when looking after their children. The list of hats we wear as a parent/carer of a child with CVI may feel never ending. Although the job may feel daunting at times, seeing my kids grow is the biggest reward I have ever experienced. Remembering to enjoy time with both my kids individually, and as a family, and celebrating each milestone along the way has taught us patience, kindness and has brought us lots of fun along the way.

Good luck to you on your journey (and please feel free to connect and share in our Facebook Community)!

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