July 2017. When our lives took an unwanted, unexpected turn. I noticed something was off with the younger of my twins, Anvay—he wouldn’t make eye contact, cried excessively (not colic), and had clenched fists. Then, his pediatrician mentioned ‘spasticity,’ and my world collapsed. Terror, fear, a horrible sickening feeling took over me. A feeling of falling into nothingness. The future uncertain.
A battery of tests and a clanging banging scarily noisy MRI later, we heard the worst – Anvay did have brain damage and no one could tell if he would ever be ‘normal’. We were suddenly part of the largest minority group on the globe – disability affected people.
I called a friend who has a special needs child. She told me it is okay to cry. And cry I did.
The last 7 years have been tough, beautiful, painful, loving, pure. Our family came closer as we huddled around Anvay to share in his joys, sorrows and make his life better in every way possible. We were no more a family just raising kids, we are caregivers to a child who needs our support in many ways.
But today is not about Anvay or my own experiences. I wanted to flag off #IDPDbogHop2024 by talking about caregivers. We know that parenting is hard work. But when you’re raising a child with special needs, the level of care and stress is compounded 100 times. Physical disabilities, learning disabilities, illness, Autism, ADHD, Anxiety, OCD, and Developmental Trauma are parenting game changers.
More often than not, society overlooks caregivers’ contributions, not realizing that they need support too. If it takes a village to raise a neurotypical child, it needs a bigger, more empathetic and compassionate village to raise a special needs child. Parents and caregivers of special needs children have special needs too.
Today’s post is dedicated to the “invisible heroes”, their struggles and how you can support them. And to do so, you need to understand them and their struggles. Sharing a peek into the lives of caregivers from my own experiences as well as those that I have interacted with over the years.
Caregivers are dealing with grief
The grief is real. Dealing with your child’s diagnosis is devastating news and parents go through all the stages of grief. It might get better with time as parents start accepting the diagnosis, but I don’t think the pain ever fully goes away. With time parents start adjusting to a new normal – days filled with doctor’s appointments, therapies, surgeries and uncertainty.
Often they are overwhelmed – trying to figure out what hit them, understanding all the medical terms being thrown at them, thinking about the uncertain future. Some families break apart unable to take the strain of the diagnosis.
Caregivers are often lonely
Except for parents in a similar situation, not many others can really comprehend what caregivers can be going through. Hence, a feeling of isolation. A feeling that no one understands. Conversations about milestones, routines, or future plans are a world apart from the experiences of those around them. A fear also that sharing their struggles with others will only invite pity. And well, often enough juggling multiple responsibilities, likely leaves little or no time for any social interaction, further exacerbating the feeling of isolation.
Caregivers can be tired
“I wish I could sleep some more.”, said a friend of mine with a special needs child. It hit me hard. What is unseen is the hidden workload – the hours spent researching therapies, coordinating appointments, advocating in schools. Add to that sleepless nights, physical labour of lifting and carrying the child, tending to her everyday needs. Handling emotional issues, physical violence could also be part of daily challenges of a parent. And finally, the constant mental load—planning for contingencies, worrying about the future, and ensuring their child’s needs are met in a world that often overlooks them.
It’s a full-time job layered on top of everyday parenting. They are handling challenges most people never even have to consider.
Caregivers need care
In the midst of juggling work and taking care of their child, parents often forget self-care, when in reality they need self-care and self-compassion much more than anyone else. And then there’s guilt – how can they place their needs first, or take time out for themselves when the child has so many needs. But the fact is without their own health and wellness, they cannot provide the exceptional level of care their child needs. In these circumstances, a friend who reminds them to take care of themselves or helps them take a break is a god send.
Caregivers are grappling with many emotions
Life can be overwhelming for everyone at times, but these times are more frequent for caregivers of special needs children. The range of emotions that they often deal with are also much wider than usual. They often grapple with anxiety, self-doubt, guilt, grief, anger, fear, and even resentment—not at their child, but at the overwhelming weight of responsibilities and the loss of personal dreams. These emotions, compounded by loneliness and the constant worry for their child’s future, create a heavy and unrelenting emotional burden that many silently carry.
And then this: Many special needs parents fall asleep with the worry if their child will make it through the night. I follow many parents with SN children, and it breaks me and wreaks havoc with my emotions when I see that a child I have been following, have been invested in has passed away. And the fear is unimaginable.
Caregivers could be under financial strain
Raising a child with special needs is expensive. Costs of therapies, surgeries, medical appointments, adaptive equipment, and specialized education – could be prohibitive. Often mothers are forced to reduce work hours or leave their jobs to provide care, compounding the financial challenges. So often have I felt grateful for the insurance offered by my employer, otherwise I know how hard it would have been for us.
So, what can you do?
Of course not all parents are in the same boat and going through all the challenges above. And neither are you in a position to address all their challenges. But in whatever way we can, we should do our bit to ease their lives a little bit.
Be present. You can start by understanding their specific challenges and being there for them. Perhaps just provide an ear to genuinely listen. Ask them what support they need and how you can help. Offer specific help if you understand their struggle – babysit, make a meal, accompany them to an appointment. Acknowledge their struggles and emotions without trying to fix everything.
Include them. All of us want to live regular lives and so do our children. Yes they may not be able to be a part of everything but there are always ways to include if you are willing to make an effort. Invite them, go out together and find places or options where the kid can be comfortable too. At the same time, understand that they may have to decline invitations or step away from activities to manage their child’s needs. Respect their decisions without making them feel guilty or misunderstood. And continue to include them.
Have compassion. Be kind. Simple acts of kindness go a long way. Check in regularly. It can remind them that they are supported and cared for. If their child behaves differently or requires more attention, be patient and understanding. Do not judge their parenting style. Avoid making pitying or judgmental comments about their child or their situation. Sometimes I am shocked by what people can say knowingly or unknowingly.
Don’t avoid the topic. It is okay to ask questions when they are coming from a genuine place. If you see a parent of a special needs child at your kid’s school, introduce yourself, offer a smile and make a nice comment about their little one (doesn’t have to be about their disability) – it might make all the difference.
Educate yourself and your children. Understand the specific condition. Do some research on the diagnosis. Depending on the age of your children, explain the medical issue to them. Abeer, Anvay’s twin knows since age 4 or 5 that Anvay has brain damage and uses it to explain it to other kids as well. Try to encourage friendships between them and your own kids. Offer invitations for play dates, birthday parties etc.
At the end, by showing kindness, offering a helping hand, and simply listening, we can create a society where parents of special needs children feel supported, appreciated, and taken care of in their journey.
As we begin this year’s blog hop, I encourage you to think about the caregivers in your life. Their stories are often unheard. Let’s take this opportunity to celebrate, support, and stand up for a world where every caregiver feels appreciated and cared for.
This post is a part of “International Day of Persons with Disability” blog hop hosted by Sakshi Varma – Tripleamommy. #IDPD2024Bloghop. Access all posts of this blog hop at https://tripleamommy.com/2024/12/02/beyond-barriers-amplifying-voices-for-inclusion-marking-idpd-2024/.
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Regards, Sakshi aka tripleamommy
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