When we were in the process of having Keyan diagnosed with autism all the doctors and therapists kept reminding us « to take care of ourselves and our marriage ». At the time we felt that was a luxury we couldn’t afford. Because there is no cure for autism it seemed like a race against the clock. According to research those who start therapy early have the best outcome. Therefore, time was of the essence and I had to ensure everyday Keyan was working to move ahead in his learning. When we would be reminded to take care of ourselves I remember thinking we have two young children (one with special needs) how can we be that selfish?!. These people must be crazy. To do good by Keyan our focus had to be on him. We put all of our energy into fixing him. Yes, I was naïve to think I could make Keyan’s autism go away. My fear at the time was not only to get things right with Keyan but also ensure I didn’t mess up my beautiful Manisha in the process. She too needed to know her self worth. I didn’t want her to ever feel that she was second fiddle to her brother.
After a few years of burning the candle at both ends I was on the verge of a total breakdown. I approached Kunal with the idea of going on a week’s vacation down south just the two of us. His response was we can’t leave Keyan. I said to him that it was fine I would go alone. That is how badly I needed to escape my life. I never liked flying but I was willing to go at it alone in order to lift the weigh I had been carrying. I got to a point where it felt like I could no longer breath. I knew if I didn’t take time for me I wasn’t going to be able to continue on the way I had been. I was headed towards a nervous breakdown.
Kunal finally agreed and we put a team in place to watch the kids while we spent a week in the beautiful Dominican Republic. It was a week of pure bliss. We got to eat, drink and be merry. We relaxed on the beach, did some people watching, read books, played in the water, danced at night - we took everything the experience had to offer. We even did a photo shoot on the beach. I recharged my batteries and more importantly reconnected with my husband. At home we are so busy taking care of the family we forgot ourselves in the mix. It was on that vacation we realized how much fun we can still have together.
We came back from that vacation refreshed and ready to immerse ourselves back into our crazy busy lives. That vacation was so important to our marriage that we decided to make it a yearly tradition. Every Fall we head down South to an all inclusive resort so we don’t have to worry about groceries, cooking, cleaning, making beds, working, etc… We go where we feel we are being taken care of.
I am not the world’s best traveler because I don’t like flying. I have recently come to realize that I have a gamut of sensory issues myself. I don’t know if my sensory issues have magnified with age or if I simply came to terms with them. I used to feel that my sensory issues were part of my anxiety disorder but they’re not. Therefore, walking into an airport my body immediately feels like it’s no longer my own, I feel like I am floating – it’s almost like my feet are not touching the ground. Noises are magnified and peoples voices too. I begin to feel the energy being exuded by others; stress, fear, impatience, and excitement. My brain starts to take in too much information and it overwhelms me. I am constantly working to block out the noise. It is a true internal struggle. Once I have reached my destination I find myself again.
People often say to me how do you do it? They leave it an open question so I am left to assume they mean how do you raise a boy who doesn’t speak, cannot and will not be autonomous and has no future without you and your husband. My response is I have no choice. I have to find a way. Then there are those who say how do you do so much and still walk around with a smile on your face – how do you stay so positive? My response to them is « this is my life and I want to make it the best possible – especially if I only get one shot at it ». I don’t mind when people ask me questions. In fact, ask me anything because I would rather you ask then be left to your own assumptions. I will admit there is part of me that thinks I don’t know what they are really alluding to …sure Keyan needs a lot of support but as his mom it’s my job to do that work. It’s only when we allow ourselves to take a step back or remove ourselves completely do we understand the magnitude of a situation. It is in those moments when I get to remove myself from the day to day grind that I am overwhelmed by what I have to do daily. Don’t get me wrong it’s not like I am running all over the place overwhelmed and pulling out my hair to get through the day. I am very methodical and plan my day ahead of time so anywhere I need to go I am 10 minutes early. I take moments to drink my coffee quietly, I run to burn off the cray and I’ll nap for 20 minutes if my body needs it. I take those moments so I am not walking around angry and bitter. I want to be the best I can be for my family so I pace myself accordingly – that is how my day goes.
It’s more the emotional baggage that weighs on me. I was born a sensitive soul. I used to live purely by an emotional compass until I learned that it wasn’t the healthiest way to live. I also got wiser with age and experience. I remain an emotional person but it is no longer what governs my day but I will admit I tend to live by Keyan’s emotional compass now. When Keyan is good I am good and when Keyan is bad/not well then neither am I. I can’t detach from that but I am working on it. My son takes up most of my daily energy – I have to take care of him physically and emotionally I am in a constant state of worry …
Looking back, the doctor’s and therapists were right!!! When the oxygen masks fall from the ceiling of the plane there is a reason why they say put yours on first before you put it on your child(ren). I get that now. To any parents of special needs children reading this – if you want to keep your child(ren), marriage and yourself strong/healthy you have to take care of yourself. It has to be part of the equation.
I just got back from the vacation of a lifetime and it forced me to acknowledge and accept how hard my life is – how much energy it takes to raise Keyan. That is why it is imperative for me to share with you what it really means to raise a child with autism. Writing this BLOG helps me release some of the stress I carry.
Thank you for reading…
Next up – my magical trip to Anticosti Island, Quebec.