It is most difficult to relive and write about the experience of bringing up a special child and even more difficult to encapsulate the entire experience into an article. It is not the severity of the needs that matter as much as the coping strategies that you use.
My son, now 21, was diagnosed with Autism spectrum disorder, Aspergers Syndrome and ADHD when he was 7 years old. Needless to say, I knew deep within even earlier, that there was an issue but kept hoping that nature and time would prove me wrong. It was extreme fear and the feeling that I would not be able to cope that kept me in the abyss of self-denial. Every time he touched a delayed developmental goal or showed the extraordinary spark which children with Aspergers have, I would silence the panic I lived with. Getting a diagnosis was winning the battle against my own fear and today, I can understand where the parents who live in denial are coming from.
Fifteen years ago, there was less awareness about the condition and my son, became the target of vicious bullying by his peer group and an almost callous disregard by the school he was in. This led to his fragile emotional control spiralling out and soon he would have a meltdown every other day. For those who are unaware, this can be terrifying and I decided to kick out every bit of self-pity and become his strongest dedicated advocate. It was an endless round of therapists, doctors, counsellors and being-hauled-up-to school trips. I learnt to trust my gut instincts and didn’t hesitate to try out everything and throw out whatever did not work. This included removing him from school and homeschooling him for a year till I got the kind of inclusive learning and supportive school environment he needed.
Despite getting on and working with some of the best social learning therapists, special educators, doctors and counsellors, his teen years were punctuated with violent episodes that were emotionally draining, physically debilitating and hugely stressful. It took all we had to keep him from being institutionalised or turning delinquent.
My saving grace was the wonderful support system I had with my parents, a few great friends and the Buddhist practice I am a part of. I learnt how to exercise choices and look beyond myself.I could either become bitter, resentful, angry, overwhelmed and inclusive or I could be compassionate, loving, patient and empathetic. I chose to work on being the latter. Bringing up a special child can be a huge stress on personal relationships and most marriages fissure and breakdown.
We had to make a concerted effort – it was trial and error, we spluttered and struggled but pulled through learned shared commitment. We grew up with my son – it was like you strain every nerve trying to fight something outside yourself and realize that you only need to win within. Ultimately, we did see the light at the end of the tunnel.
I am sharing my two-bit, valuable learnings which really helped and I think are universally replicated
- Work to overcome your own fears, doubts and weaknesses – Never ever be embarrassed by your child. Early diagnosis can be crucial and half the battle won.
- Develop a thick skin – People will stare, talk you down, question you and give unsolicited advice. The only ones who have a right to give any advice are those who are with you on the journey. Besides, a thick skin helps universally.
- Try to grow into a better version of yourself at all times.You owe it to yourself.
- Get a solid support system – Family, friends or parent groups. You will need it. I was also part of a group called ‘ Parenting Aspergers’. We exchanged notes, gave tips, found humour and celebrated each other’s achievements.
- Spend some time on self-care – A movie, lunch out with friends, learn special skills and volunteer to know more about others challenges. You get to ditch the martyr in you.
- Never shut yourself or your family out. In retrospect, other’s reactions do not matter. Socialize with checks and balances in place.
- Cherish, honour and love your child as an invaluable gift. The most precious gift the universe can ever give.
- Know your mission – Getting a deeper perspective helps, as everyday challenges can be overwhelming.
- Faith, trust, hope, appreciation and gratitude are not just words. They are magic in motion that works when you believe in it.
Do share your experiences about such Special Children in and around your known friends and family circle, in the comments below.