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Amelia’s Great Climb: A Mother’s Reflections

Amelia's mother writes:

As parents that came late to CVI, we felt we wasted many years going around in circles with Amelia, hence we carried a burden of guilt when we discovered CVI.

We thought we had wasted precious years where we could have fixed Amelia's complex visual difficulties. Professional after professional and recommendation after recommendation, and never a mention of CVI.

Once those three letters were mentioned, an entire world of understanding opened up for us. Although we still didn't understand what CVI was, we were guided toward a road. It was our choice to either walk that road or continue going around in circles.

We chose to start the journey along the road we were guided towards. We educated ourselves, listened to everyone, sought advise from all angles, looked at every option and we realised that CVI cannot be fixed.

We were not sad or disheartened, in fact we were relieved, this may sound strange for other parents to understand but the assistance we received from CVI experts, the CVI website, blogs and other parents, gave us the confidence to advocate for Amelia.

We learnt that CVI is unique to the individual, there is no set pattern, each day is different sometimes each hour is different. Accidentally we had altered the environment within our home, school and other areas for Amelia without knowing why but we knew we had to. This helped her muddle through the years before we learnt of CVI.

It's the challenge of challenges, its hard, its a nightmare, if you let it be, but once it's understood then as parents you can gain back a certain amount of control for your child.

Parents can control the environment, they can learn to embrace CVI and work with their child to help them understand the world around them and how they move through that world. They can help teachers to teach in a way your child can learn, explain to family and friends what is going on in your child's world, explain to professionals what you understand about CVI and most importantly explain to their child.

We now see the world through Amelia's eyes, we understand to a degree, her world.

Parents should not fear CVI as it will not heal or go away, it's the learning curve of learning curves! To try and fix it is futile.

The more you learn and understand the better equipped you are to take it on for your child and make life easier for them.

To advocate for Amelia is easier nowadays as we are learning as much as we can about CVI and we will continue to learn by listening to those that live in it and with it. We gladly open our arms to the professionals that want to learn and help also.

It takes time, patience, understanding, love and a never give in or give up attitude toward CVI. If this can be achieved then your child will thrive and learn that the world around them isn't as scary as they once thought.

We believe we are only at the beginning of a long road but we will do our utmost to make it a positive journey for Amelia.

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At CVI Scotland we are devoted to helping people understand cerebral visual impairments, and together working towards developing the understanding of this complex condition.