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#askalyson: how do i manage the fears and challenges of a child with a disability?

being fearful of an unknown future is to be expected, especially when you have so little information at this point.

by alyson schafer

oct 13 2023

3 minute read

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how do i manage the fears and challenges of a child with a disability?

it’s great to make friends with parents who have experienced the same journey but are further up the road than you. listen to their stories and ask for advice. getty images

dear alyson,

my son was born six weeks premature, which was already challenging enough, and was diagnosed with a neurodivergent condition shortly after birth (down’s syndrome). hearing the doctor outline the signs of the existing condition was a blur, and confirming the diagnosis weeks later was an overwhelming experience for me and my wife. certain fears set in about the future: how we would treat our son in comparison to his older sister? how would other children treat him? how would the school system treat him? as parents, how can we manage the uncontrollable fears and realities of raising a child with a lifelong condition?

sincerely,
wandering dad

—

dear wandering dad,

thank you for sharing your story with us. you have been through a lot in a little amount of time. being fearful of an unknown future is to be expected, especially when you have so little information at this point. this is fresh territory so racing, anxious thoughts can feel intrusive.

to cope, i would suggest the following:

self-compassion: when your mind races, place your hand on your heart, take a deep breath in, then a long sigh out as a calming reset that reminds you to be gentle with yourself. repeat until you feel more settled.

repeat a mantra: pick a mantra that feels soothing to you such as “all will be okay”, or “i’ve got this”.

baby steps: remind yourself that you don’t have to know everything. try to focus on just this one day, or if that is overwhelming, just this one hour, or even moment.

trust yourself: you can live with ambiguity. you can figure things out as life unfolds. remind yourself of all your strengths that can be applied to your current situation. if other families have been on this same journey and they navigated it, you can too. you are made of the right stuff to handle life.

lean on your team: you are not alone. you’ll have doctors and specialists on your team. they will guide you and educate you at each stage.

plug into a community: find other parents also on this same journey. there are facebook groups and other community groups who gather for events and playdates etc. it’s great to make friends with parents who have experienced the same journey but are further up the road than you. listen to their stories and ask for advice.

gratitude: notice the positives (and there are so many more to come!). our minds are designed to be threat detection systems, so we tend to hyper focus on the “what if’s” with catastrophic thinking. however, there are many blessings to be counted. if you consciously shift your attention, you’ll notice so many positives to be grateful for; the kindness of others, the joyful disposition children with down’s syndrome, the special bond and feeling of pride and protection your daughter will develop for her baby brother and more.

shift in values: watch for shifts in your values and priorities as they likely will move away from some of society’s more superficial and sometimes toxic ones. often there is a spiritual shift that leads to a life that is more deeply meaningful.

i hope this has been helpful. just as i advise parents, reach out for counselling support if you feel overwhelmed. therapists are part of your team of experts too.

happy parenting,
alyson

alyson schafer is one of canada’s leading parenting experts. she can be reached at hello@alysonschafer.com or on social media @alysonschafer.

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alyson schafer

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#askalyson: how do i manage the fears and challenges of a child with a disability?

being fearful of an unknown future is to be expected, especially when you have so little information at this point.

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