Category Archives: Motherhood

Mom of a special needs child talks about acceptance and staying strong: Aparna Nayak Interview – Part 2

This post is second in the series of our conversation with Aparna Nayak, mom to a teenage daughter with special needs . If you missed the first part, please read it here.

Continuing with our questions in this second part of the interview:

How do you help yourself stay strong?

Well, that’s a difficult one to answer. I am a human too. Sometimes like all others I too have breakdowns. I too have my mood swings and panic attacks but otherwise, I take inspiration from many moms and people whom I know and are having much more difficult time than me, and I say ‘If they can so can I’. But yes, it is ok to break down sometimes and let go. It is ok to ask for help. It is ok to take a break once in a while. It is ok to allow someone else to take care of your child for some time. You can’t be a one-man army.

Photo by Vlada Karpovich on Pexels.com

Most of the time I am told, you are very strong, we look up to you or God gives special needs children to strong moms or people who are gifted and strong, which sometimes makes me angry. We are not born strong or we are not that gifted or blessed. It’s our child and each and every mother does go beyond the limit for her offspring. No mother in the universe would want to see her child suffer. I am sure many mothers hide their tears when they see their little one suffering as we have to put up with our ‘brave face’. Stop putting us on a pedestal. We are also humans who have emotions just like others; it’s just that we hide our tears and fears from people. Only our pillows or bathrooms or journals know what we go through day in and day out. Don’t judge us with our smiles and happy face.

After Prerna was born, I gave up most of my hobbies, painting and reading. But a few years back, I started my blogs, which connected me to various authors and I started reviewing. Last year, during lockdown I took up painting after nearly two decades and trust me it is therapeutic. I had never ever gone out without my parents/husband and kid but in first week of September I took my life’s first 2-day solo trip and trust me it rejuvenated me. I was asked “What’s the need?” But I told “I just need to be with me”. Trust me take up a hobby, listen to music, join a dance class or gym, do what you want to just de-stress and unwind. It goes a long way to maintain one’s sanity.

What would you like to tell parents in the same boat?

First of all, ACCEPTANCE (as I mentioned in previous question); trust me it goes a long way. Once you accept your child’s condition it clears your mind and allows you to receive and process information easily. Secondly, it is ok to ask for help, to coordinate and delegate things. Don’t take every blame and responsibility on yourself. Take a vacation once in a while for yourself, take a breather, it is necessary for you to function properly and take care of your child, and DON’T, I mean DON’T FEEL GUILTY ABOUT IT. If you don’t function properly, then how you are going to take care of your child and house. So take a few minutes out only for yourself, to gather your thoughts, and calm yourself and then straighten your back and take on the day ahead. Meet moms of other kids, form a bond, share with them your problems, your success because you never know what might help you and them too.

How do you deal with unsolicited advice by those around you?

Ha, haha…. What can I say? Sometimes, if I am in a good mood, I just nod my head while switching off my brains and ears and giving them an impression that I am grateful for their advice. But on days when I am really in a bad mood, I just walk away from that person. That is very rare though as most of the time I opt for the former reaction even if I am in a bad mood. My advice, just smile. Because they are ignorant and believe me they won’t last even for one hour in our shoes.

Your voice: Tell us whatever you feel like sharing

Well, there is a lot but all I want to say is don’t trust anything and anyone blindly. THERE IS NOTHING CALLED MIRACLE CURE FOR OUR KIDS. Do your research and trust your gut. Once a very senior doctor told me, “Though we are doctors and we are looked upon for advice but I feel you moms are the best to decide what’s good for your child. All we can do is guide you but the final decision has to be yours as you spend most of the day with your child and you know what’s best for them.”

So I would say trust your gut instinct. Don’t fall prey to miraculous recovery and costly treatments which promise your child will be completely fine. Do what you feel is best but don’t ignore yourself. If your health is affected, remember no one might take care of you and your child. And most importantly – don’t blame yourself for what has happened and also if you are unable to achieve most of it. Most doctors (sadly) stress giving importance to the child and their schedule and therapies and all but they don’t tell us we have to take care of ourselves too. I made the mistake of making Prerna the topmost priority while neglecting myself due to which my health has got affected and now I am suffering from back issues and spondylitis and other ailments related to it like migraine and whatnot. Sometimes the pain is so bad that changing or feeding Prerna her meals itself seems to be a herculean task. On some days even getting up from bed seems to be a chore but then our children are hungry and so are we. So my advice, pay attention to your health, to your posture, ask your therapist about the right way to hold, lift your child. Make sure you don’t strain your back and shoulder. Along with your child concentrate on strengthening your body too.

Also, always take the second opinion.  If need be, go for a third opinion as well, especially when it is regarding a major surgery or anything regarding your child’s benefit. And go ahead only if you feel it is right and not because the doctor has said it. They are also humans and not God. Even Gods have committed mistakes so think, don’t take hasty decisions and most importantly there is no miracle cure for our kids.     

Tell us something about Aparna before marriage and childbirth?

Sigh! Aparna before marriage was an innocent, gullible young girl with a dream of a perfect marriage, perfect husband, perfect kids, and nothing else. After Prerna was born life took a 180-degree turn. I learned to do multitasking, managing the house, Prerna’s schedule, and many other things single-handedly. I used to be dependent on my father for everything before marriage and on my husband after marriage but Prerna’s birth taught me to be self-reliant and be strong. After all what I have gone through in past two decades, I want to do something for parents and children with special needs. I want to create awareness and do something which will make sure they receive help in time and are not misled by anyone.  

How has your life changed now?

Life has changed a lot. In a way, for good, I must say. Being a mother to a special child teaches us a lot. It shows the real facet of people and society. It tests our limits and potential. We discover our hidden strengths of which we are ignorant. I started blogging and writing book reviews a few years back. I have started a home business of baking healthy and sugar-free cakes, cookies, and stuff in 2015. I have published my first e-book Yours Truly in 2019. Recently in lockdown, I rekindled my love for art and creativity and picked up paints and brushes after nearly two decades. I have started doing mandala art therapy for myself. Work is going on for my second book which is based on my life experiences as a mother. I regained my self-confidence which was shattered by gas lighting by some family members and blaming me for being responsible for Prerna’s conditions. Yes, slowly trying to live life to the fullest taking a day as it comes. I used to keep asking “Why me?” but now I don’t. Instead, I offer my gratitude that God has made me what I am today due to Prerna. I have learnt many lessons. Only regret (sometimes) is if I had that knowledge and capacity initially, things would have been bit different perhaps. Maybe! But as of now taking it as it comes with a smile.   

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Raising a child with special needs: The story of Indian mom Aparna Nayak – Part 1

Meet Aparna Nayak, a woman who dons multiple hats while juggling between different roles of a mother, a daughter and a wife. She is a mom to a teenage daughter with special needs whose caring takes up most of her time. To unwind, she manages to listen to music, paint, and read and review books. She has also authored a book titled Yours Truly – a collection of emotions. Her book comprises 32 short stories written in poem-prose format. She is also a home baker (goes by the brand name Chocodisiac) specialising in healthy and sugar-free cakes, cookies, chocolate truffles and snack bars.

Tell us something about your daughter

Prerna was born like any other girl child in India in September 2004; welcomed by some and not by a few people. But she is my Dad’s aankhon ka taara (the apple of his eye). She has my parents and her dad twisted around her little finger. She initially had me too but then I had to be a tough mom for sake of her benefit. At birth, she looked like a normal baby, cute and beautiful; one look at her cute angelic face and you would fall in love with her huge doe-eyes. But as days passed her milestones were delayed. To date, we are unable to identify her condition correctly in spite of the numerous tests she has gone through. To make matters easier for themselves, doctors say that she has cerebral palsy with epilepsy just because there is a small gap between the two hemispheres of her brain and she gets convulsions (fits). A few years ago, her doctor suspected that Prerna has some syndrome or genetic condition. However, the reports of all the tests came negative. So even now, her exact diagnosis is unclear.

When did you learn that she needed medical attention?

Since I was a young and new mom and this happened before the smartphone and internet boom in India, I initially did not realise that Prerna was special. She had issues latching on me, she was a light sleeper and her head holding had not happened even when she was six months old. Maybe it was our fate or bad luck that even the half a dozen doctors whom we consulted couldn’t pinpoint anything about her condition. Some said maybe since she isn’t breastfed she is weak and will take time, some doctors said some kids are slow so we need not worry. But when she was nearly eight and a half months old (around May 2005) she had to be admitted to ICU due to jaundice, double pneumonia, and severe viral infection. We had nearly lost her. But somehow we pulled through it.

One day, she was asleep on the hospital bed with her head tilted at an odd angle (as she was still not holding her head which usually happens within 3 months of birth), a senior paediatrician who was on his rounds came up to her bed, looked at her and questioned me, “Why is her head at an odd angle?” I told him that she had not started holding her head. Hearing that, he blasted me, “How come being educated you people have still not started her treatment?” I looked at him bewildered as I couldn’t understand what he meant. After his junior said something to him, he softened his stance and asked me some questions about her birth history and all and that’s when he told us about physiotherapy which could help Prerna. It was the first time that we heard the word – physiotherapy. Thus started the never-ending cycle of visits to numerous therapists, doctors, tests, and trial and error methods.

What treatments did you try / didn’t want to try and how did they help / didn’t help?

As soon as my daughter was discharged from the hospital, we were directed to a physiotherapist who examined her and told us that we needed to start therapy as soon as possible. But since she was weak from her recent near-death experience the doctor gave her a fortnight to heal and recover. After a couple of months, when she was not showing much improvement, we were directed to a well-known neurologist. This should have been done initially which sadly neither we knew nor the experienced doctors advised us. Then started the trial and error part with the neurologist recommending some or the other tests and medicines each time we visited for a follow-up, but we never got a proper answer.

Moreover, my husband’s job involves travelling and he is out of town most time of the year. So coordinating the doctor visits (which was at the other end of the city) and the tests and all was getting way out of hand and quite delayed. We tried most therapies like physiotherapy, occupational therapy, speech therapy and special education. While all the sessions did help to some extent, they didn’t make much difference because my daughter is smart and a bit lazy and, not to mention, most pampered. She didn’t want to make an effort. But her therapists were persistent and we were able to achieve many milestones for which I am grateful to them. Prerna did start holding her head a couple of days before her first birthday, she started coming from supine (sleeping position) to sitting on her own, sitting to kneeling, and then standing with little support from us. She had started walking with minimum support from us. But then fate intervened and the therapist left the job. The new one was not getting along with Prerna, and also she became smart and started to resist the therapist. Finally, due to my health issues, we had to start the home therapies, which to some extent was helping her maintain her body tone and posture. However, due to the covid situation, we had to discontinue everything now.  

What are the biggest challenges as a child suffering from special needs / cerebral palsy?

First of the biggest challenge for any child and their parent is correct and timely diagnosis of the child’s condition. Nowadays, with advanced technology and science, most conditions can be diagnosed early. Cerebral palsy is a huge spectrum. Depends on the severity of the brain damage, part of brain damage and many other factors determines the severity of challenges. Another main challenge is ACCEPTANCE. I am saying that in bold, caps and underlined because unless and until you accept your child is a special needs child, no amount of medicine, therapy and treatment can help. The more you are in denial the more it hampers the healing. Once you accept it, your mind opens up and you can see the clear picture and it is easy to go on with life.

How do you help Prerna feel good and comfortable?

For most of us, food is comfort. So whenever she does anything good I pamper her with her favorite food. Sometimes praising her for the smallest effort she makes, hugging her, clapping on her success makes her feel good. Initially, I too fell on the bandwagon and used to dress her up like normal girls without realising that she has sensory issues, meaning she doesn’t like normal things like bangles and their noise, combing, shampooing hair, etc. She used to get irritated and fidgety but slowly I realised my mistake and started to avoid things that irritated her. This did cause some issues from some members of the family and even her therapists pointed that out to me, but for me, her comfort was more important than anything else.

Read the next part of the interview of this amazing mom in our next post. The next part of the interview, that will inspire moms of children with special needs, covers the following questions:
How do you help yourself stay strong?
What would you like to tell parents in the same boat?
How do you deal with the unsolicited advice by those around you?
Your voice: Tell us whatever you feel like sharing
Tell us something about Aparna before marriage and childbirth?
How has your life changed now?

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The No-No stage of almost-three-year-old toddlers

NO. NO. NO. NO. Is this the current favourite word of your toddler? Especially, when it comes to meals! My toddler is 2 years and 9 months old (at the time of this post) and she uses this two-letter power word the most from her decent vocabulary.

Ah, how happy I was when I got that booster seat to encourage baby led weaning when she started sitting and eating well. She started eating by herself for a while and if you have a one-and-half-year-old kid, you know the joy. Ah, the dreams that finally she and I will enjoy the mealtime joy of eating together instead of one big person spoon feeding a little one first! Welcome to reality… It’s not happening anymore yet.

So if all those beautiful Instagram posts by moms whose kids are eating by themselves are making you feel the pressure, relax. People tend to post more about achievements than otherwise. If your kid is being a picky or fussy eater, what is the probability that you will post that all over social media? See what I mean? Some kids, especially in the 2-3 years age group, are exploring the power of the word NO and using it effectively… Lol. So yes, all little toddlers who start self-feeding, might take a little/big break at this stage. Don’t stress it out too much. If you notice, they will mostly eat fries, chips, chocolates and cakes using their hands without any effort from us. So they are capable of eating without help. They are just not keen on having the daily routine healthy food 😜

I am not going to bore you with how you should keep trying different types of foods, different plating and presentation, creativity, new place to eat, gaps between meals, etc. If you have read until this point of this post, it means you might have already tried it all, right? So all I want to say is relax. It’s stressful, I know, I have anxiety issues and I have been really bothered by the recent fussiness. But I realised today that this will not be the case forever. She will eventually eat without me hovering around her head, reminding her constantly to eat / chew or feeding her those unending morsels. It is, in all probability, a phase… a boring, irritating but this-too-shall-pass kind of phase.

So, well, join me in relaxing a bit. It’s okay of we are still feeding our toddlers with our hands while other kids of same age are all eating independently. Let’s not compare for our own peace of mind. Few years from now, we will simply remember how our toddlers took a little while to reach this milestone. There’s no point losing sleep over this by worrying too much. This is the stage when kids explore power struggle (and maybe we too!). So keep trying at intervals and this too shall pass. Enjoy feeding your kids when necessary for now, as we all know that they grow up so fast! Savour the moment instead of giving into peer pressure and stress.

And if you managed to pass this stage, let us know after how long and how exactly did it happen! Let’s be honest, we all need some useful, tried and tested tips!

Happy parenting!

Follow my motherhood journey on Instagram.

15 Tips on how to relax as a tired mom

Are you a tired and overworked mom? Welcome to the club! The desperation to feel relaxed, even temporarily, makes us spend whatever little time we get to research advice everywhere possible. You can Google all the possible solutions shared by many mothers and parenting experts online. Some of those ideas really work. But, let’s be real. Not all of us have that liberty to follow all those tips (I will share a few later in this post) to relax as a mom. Some of us are single moms, some are without family support, some are juggling jobs and home, some have more than one kid, some have elders to take care of, some have chronic illnesses and relatively lower energy levels and some are really really very tired regardless of whatever our Instagram pictures show the world.

Photo by Andrea Piacquadio on Pexels.com

It’s been 31 months since I became a mother. As some of you following my blog know, I suffer from fibromyalgia and all the symptoms that come with the syndrome. And a few more medical conditions that make even some of the simple motherly tasks extremely difficult for me. I did not give in to my medical condition and have been pushing myself every single day of excruciating endless pain and now severe sleep deprivation. Needless to say I have researched all the tips to relax over the last two and a half years. But frankly speaking, I haven’t been able to implement anything. I could not even manage to do those kegel exercises after a normal delivery (with forcep assistance at the last minute) and well, my bladder has started to really bother me now. That’s a story for a different day.

Last night, I finally hit the bed at 2 am thinking I would be able to sleep then. I co-sleep with my toddler. She was fast asleep and I switched on the night light to have some water. That’s when I gazed at her lovely face. She was sleeping like, well, a baby! It was a magical moment that took me to the time when she was born and what followed was almost meditative. I reminisced those initial weeks of the super hectic new mom life. Remember that time? When you are just learning everything from how to help a baby sleep, feed her non-stop, burp her, change nappies endlessly… you know that phase! But at the end of that super long and tiring day, however drained out we all new moms were, remember that one thing that made us smile late in the nights? Yes, looking at our baby for so long, watching that tiny (often smiling) face, those tiny fingers and toes, and feeling the miracle of motherhood. I remember just watching her for long while she was asleep and somehow that made me feel so happy and relaxed even when I knew she might wake up in two hours for another feed!

So, last night I realised that over the months, I did less of that… watch her sleep at the end of the day and reliving the memory of the day I held her in my arms for the first time. The daily chores and running around make us forget the most beautiful day of our life. That moment has so much power to make us feel happy and relaxed. Trust me, last night felt so special and different as I just watched my toddler sleep, the way I did when she was a newborn. So the next time you are feeling tired and helpless, just look at your sleeping baby and know that you are doing a wonderful job as a mom.

Also, try these tips to relax when you can, if you can (I am keeping Covid lockdown in mind):

  1. Get some me-time, even if it is for 15 minutes in the privacy of your bathroom :). Read a book, browse the internet for non-parenting stuff, watch some show, chat with a friend… something you don’t get to do very often now.
  2. Exercise, meditate or do some yoga. Else play it on the TV and do it with your toddler.
  3. Play some music which is not nursery rhymes 🙂 Dance, even if you have two left feet! Sing, even if you think you are bad at it.
  4. Indulge in some self care if you have been avoiding it since you became a mom
  5. When you spend time with your kid, sometimes do a fun activity that you both can enjoy. Play a game from your childhood, like hopscotch.
  6. Go for a walk.
  7. Talk to a friend or a cousin or a nice relative or neighbour you haven’t spoken to in a while.
  8. Play a game on your phone / gaming console / whatever, but nothing stressful.
  9. Indulge in good food to be in a good mood.
  10. If you can’t step out, just look out of the window and observe whatever you see, sky or streets or people or birds. Try not to think about what all work you need to finish today!
  11. Start writing a diary.
  12. If someone offers help, just take it. Don’t feel guilty about lying down for sometime when someone watches your child.
  13. Schedule your day. It works for some parents but if this stresses you out, don’t do it.
  14. Post covid, well get out and meet people, eat out, watch movies and visit malls and parks and everywhere outdoors!
  15. At the end of the day, don’t forget to watch your sleeping kid for a few minutes and think about all the good memories with your baby!

Most importantly, do not compare yourself with other moms who you think are able to multitask more. And, never get affected if someone judges you. They are not in your shoes and only you know that you are doing your best for your kid.

Hope some of this helps you. Do share what helps you relax as a mom. And remember, you are awesome!

Happy parenting!

Photo by Andrea Piacquadio 

Starting a mom blog

Listen to the Podcast
Photo by Andrew Neel on Pexels.com

I have been blogging since 2004. That’s around the time blogging became a trend with writers, copywriters and all those who felt they should write but never knew where to start.

My career in advertising and online communication further made me all the more interested and active in blogging. There was a time when I was running around a dozen blogs, and that too I was active on all. What can I say, I had too much to say 🙂 I joined blogging communities and groups, won some awards/prizes for my posts and all too! That was all until I was diagnosed with Fibromyalgia. A truly debilitating and invisible illness. Life changed, slowly and a lot. Typing became tough, sitting became tough. At this very point in my post, with such little number of words, my fingers, elbows, shoulders and neck are already hurting. That’s how things changed. I reduced writing blogs, started working part time and then started freelancing.

Finally, after 10 years of marriage and giving up all the strong meds to plan a baby, I became a mom on 20th November 2018. My little angel is 18 months now and as she takes a decent nap in afternoon. So, I can get some me time.

However, with the covid19 pandemic, anything and everything we read and watch these days are obviously about it. I have been reading the news all the time (the break time, of course!) since over two months of lockdown and I realised I should reduce it. I am literally just sleeping 2-3 hours every 24 hours these days (will talk about it in another post). To use a break from the daily chores and have a me-time, I decided to do what I loved most – writing. Since my life these days is all about being a mother, I guess it’s time to start a mom blog to share my experiences and ideas as my little one enters her toddler years. And honestly, I love the sound of being a mom blogger, don’t you?

Hope I am able to share many useful insights, information and ideas with MOM & IDEAS. I am open to suggestions, please leave a comment and join me in this new journey.

Happy parenting!