If raising a child needs a village, raising a special needs child requires a bigger, stronger and more resilient village. Parenting is hard but throw disability into the mix and the entire game changes. Every emotion, every experience is magnified.
Stress, guilt, anger, helplessness, hopelessness, grief, sadness, exhaustion take a permanent place in our lives. Often it is like swimming against a current that never slows. Caregiving does not come with an ‘off’ switch. Even simple activities may require a lot of thinking and planning, leaving very little time to actually relax, to let go.
Caregiving is like water….
Just like water, caregiving is not constant, it changes shape and form, adapting to the situation. Some days may be serene, like a lazily flowing stream, gurgling along. These are the days when everything goes well, when you are feeling hopeful. Other times, stormy clouds may gather, when grief or guilt or hopelessness take hold of you. Those are the worst, the days without hope. Often times it is like a raging river, relentless, when one is exhausted with night after night of sleeplessness, or from the sheer labour of moving, bathing, cleaning, feeding a growing child.
But just like water, it is also a life source – for your child – because that is what is sustaining them. It is your caregiving that is nurturing, healing and strengthening your child. And just as water carves through rock over time, your caregiving is the embodiment of resilience, slowly yet surely helping your child improve, one small improvement at a time – a smile, a word, a tiny step taken.
And just like the river, you need replenishment too. You too, need moments to refill, to be poured into, to receive as much as you give. The key isn’t fighting the water—it’s learning how to move with it, when to swim, and when to float.
Easier said than done…..
Yes, and I will not deny that. Parents have a lot to handle – not only for today but plan for the future as well. From daily therapies and medications to surgeries and treatments. From meltdowns to behavioral and sensorial issues to even violence. From emotional overload to physical labour. The constant decision making – from medical choices to daily routines, the pressure of making the right choice is always there and along with it the fear and guilt of having made the wrong decision.
Amidst all this, we still need to remember ourselves. We need to remember self-care. We need to remember that we can’t pour from an empty cup. We have to put on the oxygen mask first.
Floating looks different for everyone….
As different as our children’s needs are, so are our struggles and therefore our coping strategies. Add to that our family situation and financial situation. So, there are no tips or ideas that fit all and we need to find what works for us.
It is okay to ask for help. Expand your village: to me this is one of the most important ways to lighten our load. It is difficult for just the parents to undertake full expanse of caregiving. Share responsibilities. Enlist friends and family as and where possible, hire help that is affordable. If you can’t or do not want to delegate caregiving responsibilities for your child, delegate other household tasks. Don’t wait until you are drowning to reach for a hand.
Take rest: Just as a new mother is advised to sleep when her newborn sleeps, try to rest as and when you can. A power nap. A short walk. Listen to music during a therapy session. Write a page a day (writing can be cathartic). Take a deep breath. Enjoy the moments of stillness. Practice mindfulness.
Accept your feelings: our feelings can be on an emotional roller coaster even on seemingly regular days. There may be triggers we wont even notice. Well into the second month of this year, I was feeling hopeless, fearing for my child’s future. Nothing had changed, and I did not know what caused it. So now, I just let myself cry when grief takes over. Accepting our feelings is the best way to move on from day to day.
Celebrate your wins: celebrate every small win, every little achievement of your child. He made a new sound today? Celebrate! She ate new food? Take a video! He communicated, he wanted to pee? Bravo! Tell the whole world! It may seem sometimes that our losses are more than wins – and that’s exactly why we need to celebrate and remember each one of them!
Good enough is better than perfection: focus on what you can do. No one can be the ‘best’ caregiver. Know that you are trying your best. Every plan and every decision need not be perfect.
Find a support group: Caregivers often feels isolated and not understood. Connect with other caregivers – online or in person if available. I have joined a number of Facebook and Whatsapp groups and have always found a useful piece of advice, encouragement and hope from these groups.
Counselling is okay: if need be, consult professionals like therapists, psychologists, or specialized counsellors who can provide you with coping strategies. Remember, seeking help is an investment in your well-being and, by extension, in your child’s future.
Embrace your aspirations: I know many parents who have managed to carve out their aspirations – often enough going into completely new fields. For instance, Anvay’s therapist has a special needs child herself. The support group that I am a part of is run by the mother of a special needs child. Another mother I know started a business of toys and equipment required for therapy. Another wrote a book. Try not to let caregiving take over your life.
….And life can still be fun….
I know it is hard to enjoy the waves when you are terrified of drowning. And by no means am I minimizing your struggles by saying that life can still be fun. But we need to allow joy in as and when possible. There is a family I really admire – they have a website called, “Have wheelchair, will travel.” They have a child with cerebral palsy (just like Anvay) and travel the world with him, undeterred.
As a family we also try to enjoy as much as possible, whenever we can. By now we understand his likes and dislikes. Anvay is very social, and he enjoys meeting new people. At a recent lunch, Anvay fully bonded with one of the guests who cared enough to play with him!
Almost all our family outings include Anvay – we have figured what places he likes vs those he does not and plan accordingly. For many places, we need to plan well to ensure that the place is disabled friendly, especially as he is growing up now. But we are managing. And his laughter is worth every second spent on planning!
Our village
I am super grateful for our village. We have in a way spread out our caregiving responsibilities. Anvay, his nani (my mom) and his nanny Sandhya make a team. While Sandhya has taken full responsibility of his daily needs as well as the physical load, my mom is fully invested in ensuring his therapies continue as needed, at home and outside. My prime job is that of the ‘arranger’, the mental load carrier – ensuring everything moves smoothly and across countries. And not to forget the financial load of raising a special needs child is very high – not only for today but for the future as well, when we, his parents are no more. So Kapil and I are working to make sure that today and forever, Anvay is well provided for.
And then we have our cheerleaders – Anvay’s dadi (Kapil’s mom) his Leela – always encouraging him over phone or in person – and ready to take over caregiving at a moment’s notice. His uncle and aunt whose hearts and home are open for him when he needs to stay with them for months at a time for his therapy.
And we are building his future village too. His brothers are being sensitized to the fact that he needs to be there in their future plans. We are hoping to create a strong bond between the brothers – so that he does not feel like a burden to them. He has a first cousin – younger than him but who already feels protective about him. I do hope that these boys will rally around him as they grow up and that he will never be short of love.
So, Finally….
Caregivers don’t need more reminders to be strong—they need permission to rest. They need people around them who see the effort beneath the surface and offer a life raft instead of expecting them to keep swimming. If you are a caregiver, do let us know your coping strategies too. And if you know a caregiver, please read this post of mine, to learn how to support them.
March is Cerebral Palsy Awareness Month and this is my first post on the topic this month. Please read my posts on disability and inclusion here.
This blog post is part of ‘Blogaberry Dazzle’
hosted by Cindy D’Silva and Noor Anand Chawla.
This post was created for the Blogaberry Creative (Monthly) Challenge with theme word FUN.
This post is a part of ‘H2OhSnap Blog Hop’ hosted by Manali Desai and Sukaina Majeed under #EveryConversationMatters”
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Regards, Sakshi aka tripleamommy
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