Confessions of a Special Needs Mother

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Anumita candidly opens her heart and tells the many trail and tribulations of a 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 , 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 is about six million kids who receive special needs services. The service is termed as Individual Education Plan (IEP). The IEP customises the main stream 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 number of needs like physical, cognitive, medical disabilities to even more sever life threatening ones.

With the change of time, most of the cognitive disabilities have taken its refuge under the spectrum of . has a wide spectrum. If scrutinised 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 ability to effectively socialise 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 the 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 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 learn 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 similar boat like me. As all the disabilities have variations, so does the needs of the 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 generalising the feelings of parents and 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 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 , 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 back track my day’s activity just to find where I missed something. The last few years has 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 learnt to subtract and count only the progress. The 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 realised 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 need 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 road blocks 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 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 word 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 realise 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 in a stereo type life. Cookie cut system both in and out of 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 learnt to stand tall. The school system has helped me and so has 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 learnt 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 is presently studying Electrical Engineering in a reputed university. My younger one is in middle school. 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 and from Net

 

Anumita Chatterjee Roy

Anumita Chatterjee Roy

Anumita Chatterjee Roy is an artist at heart. She has an eye for the unusual. Her naturescapes make her the quintessential Romantic. She paints, is passionate about photography, creates word images in her verses and loves to write. She cooks delicacies and is a foodie. Born in India, she was brought up in several countries. These strengthened the global citizen in her. She now lives in the Columbus, Ohio, with her husband and two sons.
Anumita Chatterjee Roy

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28 thoughts on “Confessions of a Special Needs Mother

  1. 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.

  2. 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. ☺

    • 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. 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.

    • 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. 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 .

    • 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. 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.

    • 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. 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.

    • 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

  7. 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.

    • 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.

  8. 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 ?????

    • 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

  9. 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!

    • 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.

    • 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.

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