Mental Health Awareness Week 2022 by Grace Marsh

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Helping to preserve your child’s mental health is difficult enough if they don’t have a disability, so — as the parent or carer of a visually impaired child — what should and can you do to help them? Well, as a twenty-one year old who’s been totally blind for seven years, and registered blind from birth, I’m here to help!

Independence

A challenge that many visually impaired people face is navigating a sighted, often ableist world independently. The key to unlocking freedom and general autonomy lies in childhood, in parental encouragement and early mobility training. Although I am not yet a mother, I can imagine that — were raising a blind child my first up-close encounter with disability — I would be absolutely terrified to let them explore as a baby or young child, particularly in a new environment. However, in the wise words of my auntie to my mum when she stood to comfort me after a tripped at soft play: ‘Children who can see fall over too. You have to let her find her limits by herself.’ And, boy, was she right.

Thanks to my auntie’s novel perspective, my mum raised me to be every bit as stubborn and tenacious as she, despite my disability. In fact, the only issue I ever encountered was the refusal to ask for help when I needed it. I remember that trying to zip things up and walk onto escalators was of particular difficulty to me as a child with poor acuity and no depth perception (I didn’t realise until I had entirely lost my sight that I could’ve employed tactile skills in order to help me, owing to my not really comprehending just how poor my residual sight was) — I would tug and tug at my coats until I cried with frustration, and inch towards the top step of the escalator trepidatiously, my heart in my mouth as I prepared to fall. And yet, I shot down offers of assistance faster than they could come in, determined to do things by myself. Although this stubbornness sometimes made things more challenging for me, I feel that it is the reason I have coped at all with the deterioration in my vision. As well as this, my need to remain as independent as possible has allowed me to adapt to life since becoming unwell; I am currently a full-time wheelchair user with a feeding tube, catheters and daily injections, all added challenges I have never once stopped fighting to manage.

Without my family’s encouragement from an young age, I wouldn’t be able to do even half as much as I can now, even with my additional disabilities. Looking back, albeit not at the time, I am grateful that I had to do the same chores as my sister, that my mum encouraged me to try to walk for short periods of time unguided but beside her and using my long cane, and that she allowed me to travel to London by myself despite initially having reservations. In terms of the latter most point, I thought I should relay some advice my mum was given by a blind friend’s parent, who said: ‘You’ll worry for and about them, but you have to let them do it anyway. If you weren’t worrying about her travelling independently, you’d be worrying about something else. That’s just what being a parent is, whether they’re blind or not.’ So, I — sixteen, terrified and exhilarated — was allowed to go to London. After spending two years post-sight-loss absolutely terrified to use public transport without someone with me, this leap of faith really brought me out of my shell and gave me the confidence to start travelling independently again.

Of course, it’s important that you communicate appropriately with your child, as opposed to throwing them in at the deep-end, as it were. Things which may initially appear simple can actually be incredibly intimidating, and we often need you there to guide, support and comfort us, especially when young or following a sudden loss in vision. You can find tools to both keep your children safe and encourage independence simultaneously, such as the Safe Toddles Belt Cane (https://www.safetoddles.org/aboutpbc) and the TagAlongKids straps (https://www.amazon.com/Tagalong-Stroller-Detachable-Accessory-Independence/dp/B07TN96GZ5?th=1). You can see these things and more in action over on the amazing TikTok account @guiding_kenedi, where my friends Kenedi and her mommy Andie educate the world about blindness and parenting disabled children one video at a time.

Sleep, Mood and Blindness

Most blind and visually impaired people have what’s known as Non-24-Hour-Sleep-Wake Disorder. In short, the body’s circadian rhythms (our internal working clock) are abnormal. The reason for this in visually impaired individuals is that we aren’t receiving the same visual information as our sighted counterparts: when light enters the eye’s photoreceptive cells, it stimulates our Superchiasmatic Nucleus (SCN) into releasing a neurotransmitter called Serotonin, and when an absence of light is detected by the eye, Melatonin is released instead. Melatonin is otherwise known as the ‘sleepy hormone’, so called because its job is to send us off into the dreamscape.

There are a few things which can happen due to these disturbed sleeping patterns, including but not limited to: being nocturnal, suffering from hypersomnia/insomnia, napping excessively and increased lethargy/fatigue/bad dreams. You can help by instilling a strict bedtime routine, which doesn’t change on weekends or during school holidays, and asking your child about the quality and quantity of their sleep, so that you can take them to a doctor if they’re really struggling. We all know how difficult being sleep-deprived is, particularly when it’s over a long time period, and so it’s important to be sympathetic towards them if their behaviour isn’t the best at points.

I mentioned Seratonin at the beginning of this section, and the reason for that is that — alongside Dopamine — it plays a huge role in the development of mood disorders such as Clinical Depression. If light is either not reaching your child’s brain, or if it is reaching it at inappropriate times (e.g. due to visual hallucinations as seen in Charles Bonnet Syndrome among others), then it stands to reason that their brain chemistry may be affected. Speaking from experience, following my total sight loss, I became incredibly depressed and ended up making a serious attempt on my life at the age of seventeen. Following this, I was put on a class of medication called Selective Seratonin Reuptake Inhibitors (SSRIs), which essentially work by increasing levels of Seratonin in the brain, and therefore helping to regulate their mood. Not all cases are quite as extreme as mine, but it is important to educate yourself on the signs and symptoms of mental illness in children and adolescents, even more so if they’re visually impaired.

Friendships, Assimilation and Isolation

One huge factor which often affects disabled people is isolation; often, we feel outcast or ‘apart’ from our peers, which can manifest in several distinct ways. For some, like me, it causes social withdrawal, eating disorders and/or other forms of self harm. For others, a tendency towards addiction, with some even succumbing more easily to peer pressure, and putting themselves in harm’s way for the sake of ‘fitting in´. While my point about independence still stands strong, it’s important to keep a close eye (behind the scenes if at all possible) on any concerning behaviours, friendship groups or educational problems your child is experiencing.

Not all blind people will suffer as acutely and protractedly as others, and the sad truth is that you simply cannot predict whether or not/to what extent your child will struggle with friendships, just as is the case with non-disabled children. And so, although there are higher incidences of maladaptive behaviours and relationships present in those of us with additional needs, we still need to be allowed to work through these with a measure of independence and control. Giving us this control may actually help to prevent illnesses such as Eating Disorders like Anorexia Nervosa and Anxiety Disorders like Obsessive Compulsive Disorder, as we won’t feel the same need to micro-manage what little we can if we have an established sense of responsibility and independence already.

Making sure your child is busy, and has opportunities to socialise both inside and outside of school can help to widen their network, and increase the likelihood that they will find friends (both sighted and not) who genuinely care about them, and are more willing to lend a helping hand when necessary.

In Summary

Parenting in general is a difficult, complicated journey comprising of successes and failures, pride and regret, growing, changing and adapting, so it only stands that parenting a disabled child is all of these, only amplified. The world may hold more risks for us than others, and yet we find a way — as everyone does — to muddle through and, most importantly, find happiness. Things which can help us to succeed are the encouragement independence, early mobility intervention, therapies and/or medications for mental health and/or sleep, a positive group of friends and — above all — your love, support and inspiration.

Useful Resources

NHS Mental Health Support: https://www.nhs.uk/mental-health/talking-therapies-medicine-treatments/talking-therapies-and-counselling/nhs-talking-therapies/

Sight Loss Counselling: https://www.rnib.org.uk/services-we-offer-advice-and-support-services/sight-loss-counselling-team

Kouth Online Youth Counselling: https://www.kooth.com/

Frank, for young people struggling with addiction: https://www.talktofrank.com/

Childline: 0800 1111

Samaritans: 116 123

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