In the ever-changing life of Amelia, each day throws a new curve ball and each day we deal with that curve ball. Admittedly some days it feels like a boomerang and hits you where it hurts, but we somehow manage to sort it for her.
Amelia is now almost 13 and becoming a typical teenager. As with many parents, the word teenager fills the mind with dread. In the past year, we decided that Amelia was ready to leap into the world of independence and to embrace a new way of learning.
Amelia has many issues to contend with however. CVI & CAI (Cerebral Auditory Impairment) are right up there at the top of the list.
We have absorbed as much information as possible in the past few years regarding CVI, including re-training ourselves and changing the way we live, so that Amelia could feel safe at home. Now we face the outside world. With a young teenager, that task seemed daunting, or so we thought.
Teaching Amelia the life skills she would need for her independence, is something we need to do ourselves, because so few people understand how her combination of sight and sound processing difficulties, affects how she experiences the world. Most importantly we can teach Amelia at Amelia's pace. We are not in a clinical setting, we've started at home, where Amelia is most comfortable. So, our starting point has been Amelia, where she is and what she understands.
On our list of challenges were:
Amelia also has Cerebellar Ataxia which, in addition to the challenges created by her combined CVI and CAI, affects how she processes events taking place in time, and this makes the mobility work particularly difficult, because she can't always see or judge traffic, or tell if a car is moving or parked.
The process of teaching Amelia involves repetition, and when I say repetition, I mean painstaking repetition. So patience and love is needed in abundance because we are all human, and some days are just tough-going.
However, what surprised me, her mom, was Amelia's willingness to learn, and her hunger to succeed in every task. I can only put this down to maturity and her changing brain and attitude.
The process involves repetition, and when I say repetition, I mean painstaking repetition... However, what surprised me, her mom, was the willingness of Amelia to learn and her hunger to succeed in every task
Within a few months, we had a daughter who went from having almost everything done for her, to a young girl who was doing it herself and thrived doing it.
I look back and think:
Because we saw her as vulnerable and failed to recognise a child that just wanted to grow up.
Learning about CVI and its complexities, allowing ourselves to soak up the information and applying techniques to help Amelia, changed her outlook and ours, we went from "I can't do that" to "Let's give it a go", sometimes we failed but more often we succeeded.
What we did:
We had de-cluttered our home before we learnt of CVI, but let's face it, de-cluttering in a busy home is a challenge, but not impossible.
Once a week I look around the house and remove anything that's not needed, and I clear and store away anything that I think may be hazardous. I do this by placing my hand over my left eye (because Amelia has left side hemi-inattention) and as I walk I look up (because Amelia has a lower visual field impairment, so she will miss, and possibly trip over, anything that is low). So, as I walk around, I am pretending I am Amelia, seeing the way she does. It takes less than a minute to do this but it's an important minute as only one fall can be a nasty fall, which unfortunately is not uncommon for Amelia, though not at home. We let Amelia choose the colours to paint the walls in our home, and the instant result was fewer wobbles and less swaying. These issues have not been completely resolved, but we are still working on it. Our home has many contrasting wall colours (not to everyone's taste!).
Amelia also uses a little device called an Echo Dot (a sort of interactive smart-speaker) which tells her the time and the weather, answers questions and reads books to her. Amelia dresses according to the weather report, and is completely independent now, except for tying her shoe laces, so we use Velcro fasteners. Amelia's wardrobe is laid out, so she can easily find her clothes, and her bedroom, like the rest of the house, has been completely de-cluttered.
The bathroom has been designed for easy reach, and is clutter free.
Cooking & Eating
Amelia is now making sandwiches and cooking. She used to leave the contents of the fridge and food cupboards on the floor, but simple adjustments have meant she can now both find things, and put them away. I never thought I would be organising a fridge, but this works.
Homework has been adapted for Amelia's learning and is no longer a torturous ordeal. Assistive technology has taken the stress away, using magnification, good colour contrasts and other apps. Amelia's seating has been adapted, so she is sitting at a 20 degree angle to allow her visual field to open up to her (see our information on hemi-inattention for an explanation). These accommodations, matched to Amelia's difficulties, have quite simply allowed Amelia to learn.
Social Settings & Conversations
Light is a major factor of discomfort for Amelia so we obtained new glasses for her where the tint slowly gets darker in bright conditions and turns clear when it's dark. We were taken aback when she sat and watched television - something she never used to do. She also started reading without taking breaks, and she was able to stay outdoors for much longer. We wonder whether these glasses may take away reflections, and so give her less to see.
We also introduced a hearing aid* to cut down background noise (or noise clutter as we call it) and Amelia is now able to control and identify salient sounds with a simple pen like instrument worn around her neck (as Amelia has no hearing loss, but her combined cerebral auditory and visual impairments meant that noise and sounds created a significant barrier to her learning - now she can control her auditory world herself). The pen like microphone can be pointed in the direction of a sound, such as a teacher speaking in a busy classroom, and allows Amelia to hear the teacher's voice clearly. It works a dream for Amelia, as background noise meant that at times she couldn't hear anything clearly. Amelia can now sit in noisy environments without getting distressed.
The hearing aid has given Amelia a giant leap in confidence, and she will now not only engage in conversation but will actually initiate conversation, a new phenomenon and a wonderful positive step.
We hope this makes sense - it may seem odd to use a directional hearing aid if hearing is ok, and maybe something a parent would not think to do, but once she started using it, Amelia's speech also improved dramatically, perhaps because she can copy what she hears with much greater clarity.
Amelia cannot rely totally on any one system in her brain to guide her through space. She muddles her way through, but there have been some nasty falls. As a parent, there is little to help me, so we keep trying, with what we know, and do the best we can. Sometimes we get it right, and yes, we can get it wrong too, but our motto is, let's try and keep trying until we get it right. Without question - we are getting better!
Amelia uses a walking frame for outdoor activities but never in the home. We began the daunting challenge of teaching her about roads, traffic, pedestrian crossings and traffic lights. There is a difficulty with speed as Amelia does not process speed or time accurately, so we must find another way. The success of the hearing aid means that we can teach Amelia to listen for the traffic sounds. I taught Amelia about engine sounds whilst in the car, revving the accelerator to explain to her the sound (I had a few funny looks from other drivers whilst out doing this!).
We are only beginning this process and its trial & error, but we are acutely aware it will not remove all danger (for example cars regularly don't stop at pedestrian crossings). Learning to identify speed with engine sounds will help, although we still haven't figured out how to help Amelia become alert to bicycles and quiet electric cars - but we will think of something!
We all take these sounds for granted, and for a child coping with CVI & CAI, it must be horrible and frightening, so hopefully explaining these sounds will help at some point in her life.
That is all any of us can do with CVI, keep trying and then, try again and again.
For parents on the same road, I know that the challenges you and your child face every day are daunting. I wrote this because I want to say that there is a way.
You may have been given many different labels, it feels like a stab in the heart every time a new label is added, we currently run at 17 labels for Amelia. Although labels may be important in the medical world, I have found them of no real value, because Amelia has a combination of difficulties.
You have to learn to take things in slowly, one piece at a time, and at your child's pace. Not at your pace, or the pace of others. This is crucial in the task of dealing with CVI & CAI, and when dealt with, life changes for you and your child.
Amelia's world has changed for the better, and so has ours.
Thank you for reading one parent's views on CVI.
*Amelia's hearing aid is called a Phonak Rodger Focus
Our professional advisors note:
The brain likely maps our surroundings with all our senses. This means that surrounding sound seems to interfere with visual attention, just as visual clutter seems to interfere with auditory attention. (Close your eyes when watching a movie, and listen to the music. All of a sudden the music is enhanced).
We wonder if, by diminishing the number of reflections, Amelia's new glasses cut down visual clutter, and by diminishing unwanted sound, the directional microphone cuts down auditory clutter, giving Amelia the opportunity to think more clearly. We think these original observations may well be very important, as they make complete sense when thought about in this way.
Amelia's CVIs are left hemi-inattention, simultanagnostic vision, optic ataxia and a lower visual field impairment. Amelia is also affected by cerebral auditory impairment and cerebellar ataxia. We featured Amelia in the CVI Pathway case-study: Amelia's Great Climb.
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