In 1992, when my son was diagnosed with autism, they told me that 1 in 10000 children was diagnosed with the condition. I did not even know what autism was. I was shaken emotionally, mentally, and physically. I had a new born daughter to look after as well. Thankfully, I have a very supportive family, who helped and supported in every way they could.
Basically, I jumped head long into any therapy that offered even a wee bit of promise. I did not think of myself or other family members. They could take care of themselves, couldn’t they? But I had to pull Mohit ‘out of autism’ and I only had a window of ‘5-7 years’ to do this in. I travelled every year to the US. I tried everything that the Western and Eastern worlds had to offer. Bio medical treatment, swimming with dolphins, Sensory Integration, ABA, Auditory Integration Therapy, Vision Therapy, Homeopathy, Natural Treatments, Ayurveda, Korean natural herbal medicines and many more. I spent 5 hours a day working with Mohit on a strict ABA Discrete Trial Program. All I could see were goals, objectives and data sheets.
Those years of my life passed in a haze. They were the prime years of my life; years which I lost to grief. And it was not until much later that I realized that I had carried the grief of this diagnosis for too long.
And yes, if your child is newly diagnosed with autism, you will go through grief too. It’s normal because you have a heart. But will you know what this grief looks like? What are signs that you should be looking for?
You feel terrible about enjoying anything. This includes going out for a meal, watching a movie, meeting a friend. You constantly feel that you should be doing something to help your child. If you are a mom, this feeling of guilt may be intensified. I remember putting in 5 hours of therapy per day, besides Mohit’s school hours. The days that I didn’t get the 5 hours in were hellish.
What you wear and how you look no longer feel important. You start neglecting your body, your hair, your clothes. Gradually, the person in the mirror seems more real than the person in your wedding photographs. Everything is only about the affected child.
All these are means to numb the feeling. You feel stressed out. (If you are feeling stressed, here are 5 ways to overcome it instantly.)
You find yourself being extra emotional and crying often. I remember being extra sensitive to any comment on Mohit. I spent sleepless nights worrying about the future. Many other nights, I cried myself to sleep.
You hear what people are saying but you are not really listening. You are looking at somebody but your mind is elsewhere. You are present, and yet not present. Has this happened to you?
I would like to sound out a big warning bell here. If this grief is not addressed, it could lead to depression, bouts of anxiety or panic attacks.
We as parents need to prepare ourselves for a marathon. Unless we are physically and mentally in shape, we will not be able to take part in this marathon.
I want you to avoid my mistakes. I want you to do the one thing that I should have done, and you probably have forgotten to do if your child is diagnosed with autism or any other learning disability: Take care of yourself first.
Get in touch with a Mental Health Care Professional, a Counselor who is able to help you – NOW!
Also make sure that you spend time on the following:
Exercise, meditation, any spiritual practice that you enjoy is a must. What are your hobbies? What do you enjoy doing? I love to read. But I’ll let you in on a secret: For many years, while attending to Mohit, I stopped reading. I lost touch with myself. Don’t do this to yourself. Pursue your hobbies. They will keep you in touch with yourself.
This is time spent with your spouse. When was the last time that you both went out together? This is a question that I ask parents who visit me. It’s not uncommon for them to not be able to come up with an answer. Your marriage has to be rock solid to withstand Autism. If somebody can babysit the child, then both of you should take the time to catch up with each other. Start over coffee. Then get into a meal, a movie, a concert – anything that you enjoy doing together. Keep the spark alive.
From a young age, involve the child in what you like, or what interests you. A family outing, a meal together, with parents and siblings – all these create shared memories. Don’t forget to take pictures of these happy moments. Later on in life, you’ll be glad that you did.
Often your other child will feel neglected. S/he feels that the child on the Spectrum hogs all the attention. Make that special effort to make the sibling(s) feel special too. Sometimes it could be mom, dad and sibling only (without the affected child). This is important to make your other child feel cherished. The mental health of siblings is extremely important too.
I can’t emphasize how therapeutic spending time with your friends is. With friends, you can let your hair down, talk about things not related to autism. It gives you the breather that you badly need and deserve. Just like charging your batteries. Surround yourself with people who bring out the best in you. We certainly don’t need people who pity us or our children. Steer clear of negativity.
Once you are in a fairly stable state, start looking for information about Autism.
Again, you will be deluged with advice from ‘well wishers’. You will be swamped by information on the internet. I want to sound out another warning bell to you here. Take everything with a pinch of salt. Don’t rush into things. Take your time to make wise decisions. There are some myths that are widely circulated; I will cover these myths in my next article.
The journey may appear to be arduous and the terrain, very rough. A trusted guide will help make your life easier. You will need a qualified professional who is able to look at the core deficits of autism, as displayed by your child; someone who will guide you and set objectives that remediate autism and empower you as a parent. Parent training is of paramount importance.
Mohit is now 25. He has taught me lessons like no other. I have emerged stronger. I have emerged a compassionate, connected person. My perspective about life has deepened.
Today I love life. I cherish living in Holland. It doesn’t have the fast pace that Italy has, but it has beauty, simplicity and depth. And by the way, next year I will be visiting Italy with Mohit.
If you feel like I can help you and your family, please feel free to get in touch with me. Also, I would love to hear your thoughts in the comments section.