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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Thanks so much for reading! Please comment, share and spread the word!
Regards, Sakshi aka tripleamommy
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‘Blogaberry Dazzle’
As someone who’s closely observed parenting journeys around me, this blog truly struck a chord. The way you described balancing caregiving without burning out was so relatable. I loved how it emphasized the importance of setting boundaries and allowing yourself to “float” through responsibilities instead of drowning in them. The idea of taking micro-breaks and finding joy in small moments is such a simple yet powerful reminder for parents who often put their own needs on the back burner. I also appreciated how your post addressed guilt – something most parents struggle with. Prioritizing self-care isn’t selfish; it actually makes us better caregivers. This perspective is refreshing and much needed in today’s fast-paced world.
Your post captured the emotional and physical toll of caregiving, especially for parents who are constantly juggling a hundred things at once. I loved the idea of “floating instead of drowning” because, let’s be honest, parenting can feel overwhelming at times. The reminder to set boundaries and take micro-breaks hit home—it’s so easy to forget that self-care isn’t a luxury but a necessity. The section on guilt really stood out to me because so many parents feel like they have to do it all, all the time. The practical tips on seeking support and finding joy in small moments were truly refreshing. It’s a much-needed reality check for anyone in a caregiving role – ‘H2OhSnap Blog Hop’
The caregiver I can remember immediately after reading your post is my mother for my late father. Today when my mother says that she is feeling so weak physically and tired… I say ” Ma you were even when baba was on bed , but you didnt have the time to think of you and so you didnt felt tired or weak. But now when he is not there you are concentrating on your self and now feel it, so take rest and revive.” My reason behind saying this is that caregivers are doing their job day and night and really they dont get time to rest and its our job if they are from our family to allow them to take some rest.
You are spreading so much hope in the world Sakshi. Giving was never an easy task, more so with special needs. It’s not easy building a village of future too. May there always be rivers of strength flowing from your heart.
Thank you so much Ambica ❤️
This post is so heartfelt and powerful! Caregiving is such an intense journey, and I love how you’ve compared it to water, constantly changing yet essential. Your words are a reminder that caregivers need support too, not just strength. Thank you for sharing your experience and wisdom!
Yes, I completely agree with you. I saw my mother as a caregiver to my father. Even I had gone through this caregiver stage during my mother heart surgery. Caregiver need rest, people to cheer them and most importantly more people to help when they ask.
I hope you always find the strength within you to handle life.
I admire you for sharing your journey with us and the learnings. The children are lovely and glad to know that they have ech other’s back. Sending you lots of love and strangth your way.
Being a parent is difficult. Parenting is special needs child a whole lot more. I have witnessed your journey through your blog these past years and your passion to raise awareness through your blog hop or simply sharing experiences is a boon for those seeking support. You keep it as honest as it is that a lot many can relate to.
I teared up, not at your difficulties (coz that you seem to have a good grasp over – a big salute for that!) but at the way his brothers and his cousins rally around him. That’s why children are believed to be in God’s pure form. Kudos to you and your family.
You have provided so much of information and yet the emotions seeped into my heart and filled it with joy. May you and your family always be blessed!
I agree Sakshi, it takes a village to raise a child and when we are talking about a child or person with special needs , I think it takes so much more than that, we then need policy makers to get involved in ensuring the well-being and providing equal opportunities for them to grow and sustain themselves.
Caregiver burnout is the thing which we almost always forget and keep taking caregivers for granted. The ways you explained in which they can avoid these burnouts are really helpful!
Wow, this is such a beautifully written piece Sakshi.. so beautifully you’ve compared caregiving to water – it perfectly captures the highs and lows of the journey. The idea of learning to float instead of fighting the current really resonates. Your words are so honest and comforting. Very well penned and much needed post.
Caregivers need care too, period. Raising kids is hard work and with a special child it’s harder. I’ve seen it happen around me and it takes a toll on parents. It’s great to see you have a village to support you. May you enjoy the good times and find strength to sail through the challenging ones. Hugs!
This post deeply resonates with me. As a caregiver, it can feel overwhelming, but I love the reminder to ask for help and celebrate small wins. It’s important to care for ourselves too!
Your analogy of caregiving as water—ever-changing yet life-sustaining—is so poignant and insightful, reflecting on your own journey in this regard and also apparent from your experiences in it. I’m sure your candid reflections and practical advice will offer solace and guidance to many navigating similar journeys.
I love how you have beautifully captured the emotional and physical journey of caregiving. It’s a raw, honest reflection on resilience, the need for replenishment, and finding strength amidst the struggles.
Caregiving is never easy, but not much is said about it. I’m glad you highlighted this. As a mother of a child who’s different from the rest, I hear you. But caregivers are humans too and they have needs like everyone else. They must expand their village, seek help, speak out and share the burden; that’s the only way to prevent a burnout.
Loved reading your post! and more power to all mothers who do it all with ease, it is never too easy as we pretend. so much goes in the background, yet we choose to smile and brighten up the little ones too
Caregivers get tired too. They need rest and needn’t ask for permission. I love how beautifully you’ve penned this
Such a unique analogy, parenting as water, loved the little tips and tricks you have shared. Will try to apply them, a few if not all. Thank you very much. 😊
Your concern for children is deeply etched in every line. I love the comparison of care-giving with water.
You are doing a wonderful job Sakshi! Caregiving is definitely exhausting but a village makes it easy. And the biggest rewards are the small wins! You are building a solid life for Anvay. He’s very lucky to have a mommy like you!
How unique and beautiful is this post, Sakshi! I love the way you have compared care giving to water. “Caregivers don’t need more reminders to be strong—they need permission to rest.” That is so true, and the way you have brought that out is especially heartwarming. I admire the way you and your village have bonded together to create a life for your son, and the various ways you have suggested to give care givers a sense of relief and rest. This post will remain with me for a long time. Thank you. ❤
You are such an inspiration! Being a cancer warrior and a mother of a toddler your blog touched my heart. I’m forever grateful for everything my husband does for me, I know it’s not easy to be a caregiver. Caregivers are nothing less than angels. God bless Anvay and his strong mummy and papa!
I can’t say, ‘I know what you are going through’ cuz I am not in that position but I truly truly understand Sakshi. I can literally visualize the ocean that you need to conquer and the waves that rise up every now and then.
This post is such an inspiration and a sort of a guide for care giver parents. I am so glad you wrote it. My best wishes to you, your whole family and your village and lots of love to Advay… beautiful name.
The analogy of water and caregiver leaves me with a food for thought to find creativity in nuances of life. If turned out so well and insightful.
I loved the analogy you shared and having gone through similar experiences, I can totally agree to your points.
Thanks so much!
Sending you a big virtual hug! My case is not the same as yours but I can feel your pain because my mom-in-law is a violent and aggressive patient of late stage dementia, and we all live together with our 2 kids – a 9-year-old pre-teen and a demanding newborn! Our home is also a village of caregivers at the moment.