Anumita candidly opens her heart and tells Different Truths 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 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 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 Autism. Autism 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 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 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 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
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 author and from Net