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Anumita candidly opens her heart and tells Different Truths the many trail and tribulations of being a special needs mom for two special needs children. Five steps forward and two back has a sense of achievement. If we dare to walk in her shoes, we might understand her immense courage, grit, determination, and spunk.

Special Needs: Spe·cial needs: noun: (in the context of children at school) particular educational requirements resulting from learning difficulties, physical disability, or emotional and behavioral difficulties.

The definition in the dictionary was so clear yet for me it was such a foreign language. I call myself a special needs mom, as I am the one in need of special ability to cope and work with my children. It is said that in the United States school system there are about six million kids who receive special needs services. The service is termed as Individual Education Plan (IEP). The IEP customizes mainstream education according to the capabilities of the student. All public schools are by law required to identify and implement these requirements. The services cater to a number of needs like physical, cognitive, medical disabilities to, even more, severe life-threatening ones.

With the change of time, most cognitive disabilities have taken their refuge under the spectrum of Autism. Autism has a wide spectrum. If scrutinized carefully, we all have some of its symptoms. Let me tell you that I do not have a medical degree. But 19 years of experience bringing up my children, and the various friends with children, with special needs, has given me some insight.

Both my boys are diagnosed with Asperger’s syndrome. It is defined in the medical world as a developmental disorder affecting the ability to effectively socialize and communicate. It used to be connected or said to be under the spectrum of Autism, but with further studies, I have found that many medical publications distinguish it separately from mainstream Autism.

Growing up in a family of independent learners and self-doers, it was very difficult for me to comprehend what Asperger is. Raising a child with a diagnosis, which sounded like a severe disease, at the age of 26, for me was like climbing Mt. Everest bare feet.

The day-to-day challenges were often very depressing and confusing. To face them I had learned to unlearn and change my way of thinking. Those who are reading might know of such moms, dads, grandparents, aunts, or uncles, who are sailing in a similar boat like me. As all the disabilities have variations, so do the needs of both the caregiver and the recipient. Most of us go through emotions, which we do not tell even to our near and dear ones. When I look back at the years gone by, and the years to come, I still feel the same nervous tension I did before. I am not generalizing the feelings of parents and caregivers with special needs children. This is what I feel and go through.

I am Scared

One of my well-wishing friends told me, “You have enough experience with your older one; the younger one would be much easier.” I agreed with her. But each day i am scared that I am not doing things right. I am scared of the things that my younger one is not able to do, which my older one did. There are days I freeze, and my work is pending as I am busy fretting about what is going to happen. I was not brought up with special needs people, and have not seen anyone before. My mind races with thoughts that I am not doing things right or enough for him. When things go wrong, I backtrack my day’s activity just to find where I missed something. The last few years have taught me to have faith in what is happening. There are times, when with every five steps we take forward we land up backing up three. I have learned to subtract and count only the progress. A sense of achievement is very important for both my children and me.

I am Exhausted

The first day I walked into the practice of Special Olympics with my older boy, when he was in fourth grade, I looked around and found so many kids in wheelchairs. I sat down and thought my child does not belong here. After few days, I realized that I belong here. The patient smiles on the face of the parents and the coaches, while playing and practicing with the physically and emotionally special needs children, move me to the core. My day-to-day exhaustion evaporated. It is a daily challenge to understand and formulate ways to make a non-communicative child perform academically and socially. My children needed everything in black and white. No innuendos or derivative form of instructions would work for them. It was a constant battle to work through all the roadblocks of their mind and to find the lighted niche in their mind. It drained me of my intellectual capacity.

I am often Jealous

I am happy for all those parents who talk about the things their kids have achieved. Many of them are younger or the same age as mine, but the twinge of jealousy sparks. I am not ashamed of admitting it. The thought, ‘why not mine’, gnaws my heart. Watching and hearing the bragging parents does not help. It is not their fault. The problem lies in me. In the initial days, when my older child was diagnosed, I was on the phone with my mother. I kept on lamenting and cursing my fate and repeating ‘why me’. My mother very gently replied, “why not you”. It took a long time for me to come to peace with all these. I am not saying that I have perfected and overcome all of my jealous feelings, but I have made progress.

I do Feel like the Only One

Families are like islands. Most of us have at least one thing in our family that we do not want the world to know. With my older child’s diagnosis, fear of ridicule made me shrink my world even more.

I was almost at the point of alienating myself from the outside world for all the wrong reasons. Shame, guilt, and scared to be the object of ridicule was the primary thought. It took time for me to accept the fact that I am not alone. The school system, my pediatrician, and all the members of Northwest Special Olympics helped me. They made me realize that I am not the only one going through difficulties. There may not be a child with the exact same diagnosis but there are many with similar or different special needs.

In spite it all, my children are the best thing that happened to me. They taught me life more than life itself. With each little triumph, I celebrated it with tears and goofy smiles. Every time I saw those eyes looking at me with a gold medal swung around their neck, which they won in the Special Olympics track, my heart did crazy summersaults. I let those tears brim. I am not ashamed of crying when I see the beaming face after one of them got through a test they did struggled through.

Every day I look around and see us living a stereotypical life. Cookie cut system both in and out of the home. An education system, which has goals set for all in the same way. We are not the same, then why should there be a set standard for all. The thought of society making rude remarks about my children is still there but with that, I have learned to stand tall. The school system has helped me and so have many friends. They may not understand what I go through, but they have accepted me and my children as their own. With my family being in the game with us, all the deep wrinkles get ironed out eventually. But most of the process takes time. With time comes a big requirement of a virtue called patience. This I learned from my children. Each little step we went forward, we treasured it. I knew that this may not be permanent and the regression can set in anytime, but still, we did move up and along.

My older son has graduated from High School and attained an engineering degree from a reputed university. My younger one is graduating high school, now. He has a long journey ahead. And it’s going to be bumpy. I have got my seat belts on and ready for the ride with him.

I am a special needs mom and I am proud of it.

Pix by author  and the internet


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31 Comments
  1. Joyce Yarrow 8 years ago
    Reply

    I am deeply touched by your courage, honesty and most of all by the love that shines like a beacon of hope – not only for your children but for every being whose path is unique and difficult. Thank you so much for sharing your hopes and fears and setting such an inspiring example.

    • Anumita Roy 8 years ago
      Reply

      Thank you Joyce for taking time to read. It took sometime to let myself admit of all those things I mentioned.

  2. Jasbinder Olak 8 years ago
    Reply

    Heartfelt and honest write up Anumita and it is humbling. Put the labels aside and you hit the nail on the head about why should one size fit all re the set tests and benchmarks. We all have differing degrees of need and our achievements should be benchmarked by our individual yardsticks. Thank you for the honesty. ☺

    • Anumita Roy 8 years ago
      Reply

      Thanks Jas. Life is not fair and it for some the rollercoaster ride has few mroe loopty loops than the others. So it is never right to measure everyone in one set scale.

  3. Anirban Kar 8 years ago
    Reply

    Even I was not able to express my emotions at early childhood, but by constant encouragement and self-disciplinary mode of behavioral conduct- I have managed to express more. I took up writing and composition of poems as a means to express, and that helped me. Not manifesting emotions is something that needs to be accounted for at the start of early childhood. Overall, I am really touched by the article- as I see a reflection of mine in your cubs. Best Wishes. Please keep us writing, please keep us informed.

    • Anumita Roy 8 years ago
      Reply

      That is a wonderful way of expression. In India, sadly it is very difficult to harness and nurture a child who does not fall in the said category which the society has set up. Hope with more understanding and education people will make changes in the social and educational structure of the country.
      Thanks for sharing your side Anirban and for reading mine.

  4. Noopur 8 years ago
    Reply

    How courageous , positive and brave you are ! Your cubs are so fortunate to have you for a mom !! And you are so blessed too . We all have challenges in life , only they are different for each of us . Love and hugs .

    • Anumita Roy 8 years ago
      Reply

      You are absolutely right we all have challenges in our life, its just the approach and the reflection of it on our own life and others that matters. Thank you for taking your time to read. Love and hugs to you too.

  5. Monika Chsudhary 8 years ago
    Reply

    Anumita hats off to you for being the woman you are. I can only look upto you for all that you have achieved in situations only you have faced so far. You are an inspiration to each one of us who forget to thank god for so many things we have been taking for granted. May strength be with you. God bless.

    • Anumita Roy 8 years ago
      Reply

      Thank you for the support and the feelings. I have learnt to be grateful for those tiny moments, my lesson learnt from my children. 🙂

  6. Rachna Singh 8 years ago
    Reply

    I am extremely moved and very proud of you

    • Anumita Chatterjee Roy 5 years ago
      Reply

      Thank you 🙂

  7. Anumita Roy 8 years ago
    Reply

    Thank you, Rachna, this means a lot coming from a strong woman like you. 🙂

  8. Sonia Bhattacharjee 8 years ago
    Reply

    My dear girl you are one heck of a mommy !! God bless you for bringing up such wonderful boys. Love to you all <3

    • Anumita Roy 8 years ago
      Reply

      Thank you Sonia. Blessings and love are always treasured. Thank you for taking time to read.

  9. JustAnother Mother 8 years ago
    Reply

    It was a good read. Thank you for this article. I have a 4 year old diagnose under the Autism spectrum a little over a year ago. Everything you said pretty much applies to me. My world has shrinked at east 4 times since the diagnosis. The fear of being judged, ridiculed scares me a lot. The fact that he is so different from others, struggles with everyday needs which comes naturally for others breaks my heart. Though i question myself every single day “why me”, reading your story gave me lot of strength, may be we too will get through this. One day my little boy will reach his potential and lead the life he deserves.

    • Anumita Roy 8 years ago
      Reply

      You are not JustAnother Mother…you are A Mother. One who has now a big purpose in life. I will not lie by saying all sugar coated words, but yes, you will do what is in your power to make things happen. This is what we all do. Love and wishes to you. If you ever need to contact me please do. You can email me through this website at http://www.different.truths2015@gmail.com. I would be glad to talk to pass over any information which might help. You boy is special and so are you. <3

  10. I am the mother of a now-adult child with special needs, and my own child’s problems were fairly opposite yours; as well, she grew up in the cusp between the mother-blaming era and the one in which you are raising your children, when I literally became a psychologist through trying to help my child. There are so many things that are the same with our children, even as every case is different, at least in terms of the effects on the parent. It is so hard to get through these years somehow, yet ultimately I think we come to realize that these children are our teachers, rather than the other way around. My own “special” child is near 40 now, with children of her own, and she still struggles and I can do nothing to help her now, but I well remember when I had no choice to to give everything I had. Perhaps in some way, when we think we are becoming less through the experience, that is when we really are becoming the person life wants us to be… but we don’t always realize that until afterwards.

    • Anumita Roy 8 years ago
      Reply

      Amidha thank you for reading my article. You have lot of courage. As you brought up your special child when the resources were almost nil. Life has its challenges and you have fared well. Our children irrespective of needs would always find their way out, just that, some need few extra nudges or a pat on the back. Thank you once again for your time to read and comment on this article.

  11. Sarita 8 years ago
    Reply

    Hats off to you girl for being such a braveheart & making candid confessions about your personal experiences . This will indeed inspire many.
    God tests only the chosen ones for special tasks & you have come out unscathed with flying colours ?????

    • Anumita Roy 8 years ago
      Reply

      Thank you Sarita for taking time to read and comment on my article. May I fare well in his test. Thank you for you wishes. <3

  12. Madhu 8 years ago
    Reply

    Love and hugs braveheart ! You are awesome and so are your boys!

    • Anumita Roy 8 years ago
      Reply

      Thank you so much. Your hugs are our rewards.

  13. Vidushi 8 years ago
    Reply

    We all have our crosses to bear and you bear yours with strength and dignity. In a world that expects families to appear like picture postcards and not imperfect in the slightest way, you are brave enough to help others face their fears and own up to them.

    Wishing you every happiness in the achievements of your sons…may they give you many reasons to be proud!

    • Anumita Roy 8 years ago
      Reply

      Thank you Vidushi. Yes, I agree we all have our own battles in life. Wishes from friends and family are added hands which propel me and my sons in the right direction. Thank you again for taking out time to read my article.

  14. Mita Dutta 8 years ago
    Reply

    Your experience and strength is an inspiration to me. Stay blessed and keep inspiring.

    • Anumita Roy 8 years ago
      Reply

      Thank you Mita, I am grateful that you took time to read. A feeling that I made someone feel positive about life is a reward in itself.

  15. Vivek Sharma 8 years ago
    Reply

    My family all the time say that I am wasting my time here at net, however I know I am getting knowledge every day

    by reading such pleasant posts.

    • Anumita Roy 8 years ago
      Reply

      Thank you for your kind words Vivek.

  16. Dina 2 years ago
    Reply

    So proud of you and your family. Holding each other’s hands and standing beside each other when needed is a learning process, not everyone can learn it. Love and respect for you.

  17. Meenu Mehrotra 2 years ago
    Reply

    Lots of love to you Anumita …you know you are the chosen one- take good care of yourself – caregivers are very precious ♥️♥️♥️

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