Being a special needs mother isn’t the best thing in the world as propagated by many but it’s not the worst either. It’s somewhere in the middle! Like that tiny sole boat which keeps bobbing because of constant ocean currents or high tides. The bad days seem like you’d be eaten alive by giant waves, but good days can feel like a calm vacation, although they don’t last as long. The challenges are mostly because of the unfamiliarity of the sea and once that is learned, things become better but never predictable. Because the ocean, as we all know, has a mind of its own and has the capacity to jolt the best of the boats however well made. In some senses, being a special needs parent seems like being the captain of this little boat!
My last few years have been spent in ‘learning’ in this community of special needs. Learning to accept that I am stronger than I thought I was or that I am far more emotional than my past self.
Being a special needs parent brings other challenges too. The one being, ‘challenge of labels.’ No, not for the children but for the parents. Labelling parents to be ‘super-humans’ or ‘blessed’ or ‘special’, however counter-productive it may be.
I wonder why can’t we ‘accept’ that it is difficult! Why can’t we prepare mothers realistically instead of giving false positives about the situation. Why can’t we accept that the fear of a girl, whose father had just died and at 28-year-old she now has to take care of an ailing mother and a 32-year-old brother with severe intellectual challenges all her life, are real! There is never one side of the story and right now nobody is talking about parents as humans! By telling them that real emotions, the fears, the struggles, the nightmares are NOT NORMAL, we are dehumanising them. It is important to motivate but it’s equally important to validate their fears.
The Labels
What we are doing is exactly opposite! We are labelling the special needs parents as ‘chosen ones’. It is almost similar to labelling women in India as ‘Goddesses’ who are worship worthy but not worthy of equal rights. If we are doing it subconsciously we need to stop and start treating the event of birth of a child with special needs as ‘normal’ so to have the society treat us as ‘people’ and not ‘special,’ a title I am often given by my well-intentioned friends.
Few years ago, when I was someone who was overwhelmed, ignorant and ready to be swayed by words and emotions that were spoken or displayed in context of disability, I remember being mesmerised by people who told that they were better people after the birth of their special needs children and how I too was the chosen one. And I believed!
I believed how this was the ultimate plan of the universe. By giving me this girl that I was crying for having special needs, the universe, in reality is conspiring me to become the best version of myself, just like it had done to many before me. There were tons of testimonials I was reading everyday in blogs, online forums and groups. I was ready! Ready to be transformed! For a little while, I thought I did become a better person but at every road block I kept coming back to who I inherently was. A practical, emotional, over analytical, cynical, self-centred woman who had certain idiosyncrasies and I couldn’t change that.
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I was confused. I was being told that I was more patient, accepting, calm and sensitive and so was every one else who had been ‘blessed’ with a child of special needs. But I saw the irony instead.
I was scared to confess or reveal the real me who was struggling or was a real mess. Who was scared of future or even the present. I remember older parents disregarding or even questioning the intent of new parents who talked about their fear of taking their child in public for the first time. The completely natural fears were often compartmentalised into ‘lack of acceptance’. ‘How can you feel that way?’ ‘Be positive’ ‘You are the chosen one’ being the narrative of most such conversations.
I too pretended to be more calm and in control than I was. The fact remained, I was more cranky and used to cry more than ever before. There were days and then there were ‘days’
The Irony
The trouble is, in spite of all the advertisements I couldn’t find any parent who had reached the ‘Nirvana’ just by the occurrence of the birth of their child. When people accept and expect that regular people become better people just by an event it defies the logics of human limitations (the best phrase I heard from a very knowledgable man).
Yes, very profound experiences have the capacity to transform us but just the happening doesn’t! The manifestation, the will, the humility and the perspectives and our acting on that event change us. But that surely doesn’t happen across the board as suggested.
When I hear people saying they’ve become more accepting, I can’t help but notice their ego clashes with other parents on social forums on really trivial issues; when they say they are more accepting, I read their boastful messages about their ‘Google knowledge,’ their ‘I knew I was the chosen one’, narratives to put down others natural fears.
Or when they publicly write ‘how they are kinder’, I see their sharing of articles like ‘7 reasons why special needs parents are better than others’ and I go back to my cynical self.
When parent form a hierarchy even in the special needs community based on either the ‘high-functioning,’ ‘social strata,’ ‘educability’ or ‘perceived knowledge’ then it reminds me of ‘human limitations’ and ‘human flaws’ and not the ‘unconditional love’ and ‘happiness’, the most used words in all our groups.
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The fact that our inherent traits and personality do take over from time to time is a truth and there is no reason why that can’t be accepted. Each one of us was raised in a unique way and in different set of circumstances. We all are different people with different permutations and combinations of human emotions.
We are human and humans can’t be without flaws. Limitations and challenges within us make the whole equation more dynamic. Our children with special needs have equipped us with knowledge and love and we do extend that love to others but we are not the only ones as commonly believed. I’ve seen many people who in spite of not being a special needs parent are the most beautiful souls and I’ve also seen opposite to that being true as well.
The whole point of this rambling is to really understand and question this notion of ‘our children making us special’ or ‘we are better than the rest’. Yes, we all have changed but if we believe we are on some kind of pedestal, it defeats the theory of us being better people. Isn’t it?
We are blessed, not because our children have special needs, but because our children are innocent and pure and will always be so. In this sense they are truly children of God. Not to say that I am in conflict with what has been written in the article. The journey of a special needs parent is 24 by 7 and the entire lifetime; but it also has its moments. Which parent of a 25 year old will be moved to tears that their son has gone to the theatre, all by himself. But we proudly cry. What a great achievement!! Coz years of hardwork has made this happen and how much must this adult child pushed himself to achieve this; how many moments of hopelessness a parent must have experienced in his effort to this end. And it is in these moments that the words of encouragement from a fellow parent or a well wisher makes you put in an effort for that one last time and this cycle never stops. So, for this, and only this,it is important that one takes self pride in being parents of differenly abled children.
Jyoti, I understand what you are saying and I know it is almost out of the world to see your child achieving what was not possible earlier. And I am not taking anything away from that feeling. My point is that as parents, it is also OK to feel vulnerable, weak and doubtful at times and not always pretend to be a superhuman.
Thank you for sharing this. It was well said. There have been times when I’ve spoken to parents of infants and toddlers with special needs who are questioning why they can’t seem to have it all together and are on an emotional roller coaster. I tell them “it’s okay to grieve the loss of the child you thought you were going to have,” and much of the time they are at a loss for words. Some of them eventually reply with “I didn’t know I could do that.”
Many times society and certainly the special needs community don’t realize the spoken and even unspoken pressure they put on parents to be grateful and honored to have a “special” child. I think society as a whole doesn’t know how to respond so they fumble with the classic cliches, and the special needs community don’t want new parents (or parents going thru a new phase with their child) to be fearful, so these “empowerment” speeches happen, pushing aside the need to deal with the reality of that moment.
All parents, not matter who their child is, have challenges…it’s just different challenges. I like your statement that we need to get others to see our lives as “normal” not “special”. My husband made an incredibly profound statement to me a year into being a “special parent” when I asked in exasperation, “When is life going to go back to normal?!” He said matter-of-factly, “This is the new normal.”
Well said Joanne. I loved your husband’s statement ‘This is the new normal’ and he is right. What is normal anyway. The pressure and the fears of new parents are very real and if as experienced parents we disregard those, it is a pity. Empowerment should come from within and not forced upon as is being done at most places…but thanks for taking out time to read and write a comment… appreciate it 🙂
Very nicely written Deepa. I do get frustrated with the lack of support the system and society provides our children to really reach their maximum potential. But other than that, getting a ‘special’ treatment from others (good or bad) makes me feel we are not part of them. Instead, I would just want people to be ‘normal’ to me. There are times when I do want to talk about my struggle with my child to my friends, not to gain any sympathy, but for simply sharing. But, I have realised its futile to expect people to imagine what I am going through. That is where you tend to connect better with other parents of special needs children.
Thanks Ritu for writing. And you are right. A lot of times we share for sharing but we become special or wonderful and this alienates us from the typical population in more ways than one
Absolutely Ritu…totally agree with you. ‘Normal’ is what we want.
Well written deepa.that looks like a straight from the heart blog.all of us are in a illusion most of time.sometimes I think it is ok to let that illusion be.it dose help in the most difficult times.once again that was a great read.keep up the awesome writing it means a lot for all us parents.a big thump up to you.
Thanks a ton Dinil for writing. Comment like yours mean so much and are important for me to keep writing. I am glad to felt the same way about the illusions that we as a community are in because we’ve been told so. Thanks once again 🙂
The socety says accept your child and i think parents should say accept a human being with heavy cross though borne with a smile there are tears of pain,fear of the future underlying the grin. We have our ups and downs not only because of our special childbut the social set up, expectations of the extended family.
Lel people appreciate our effforts and not put us in a pedestal where we cannot even cry wen we want to.
You are right Lakshmi..when we dehumanise special needs parents we take away their right to cry, complain or even get disappointed. We all are doing a lot but a pedestal is not where we want to be…equality instead would be a good idea. Thanks for writing 🙂