So this is how our journey actually started… After initial assessment in Ummeed and confirmation of diagnosis, they decided to provide me initial support and training, so I could go back to China and start the therapy at home… This is where we met Saadiyah our OT for the first time. Her guidance and support had helped me and made me believe I could manage on my own. We started working with a set of goals for 2-3 months. I was advised on a list of activities and strategies to use to achieve our goals.I kept coming back to Mumbai every quarter for re-assessment and update of those goals. Since no kindergarten would admit Maksim, I was totally involved with taking care of him. Learning about his condition and trying to combine my maternal intuition with the knowledge I had acquired, was the only way to find out, what worked best for him.
It was very tough and for a long stretch of time, Maksim’s behaviour was difficult. He had meltdowns multiple times a day, his food choice became very limited and I was spending 2-4 hours, every night trying to put him to bed, all through crying, screaming, kicking… Now looking back, I don’t really know how I survived those 2 years. I wasn’t able to stay calm and focused and I admit that I did float in out of depression. There were different days, some were okay, some were bad, and some I don’t even want to remember… As I mentioned above, Maksim had become a very picky eater, but many parents will agree that every kid uses food as manipulation, or let’s say “not eating” as a manipulation strategy. I could tell, exactly when he tried to use this tactic on me to "push my buttons”. During this time, we were also trying out RDI program and the Therapist guided me, on possible ways to deal with " eating tantrums". The point was to give him food that I knew he could eat (meaning no sensory issues with it), and if he acted out, just not bother and take it away. Next time when he would come looking for food, I would offer him the same thing… It was 2 weeks of nightmare! Because obviously he was rebelling against my new behavior and he was hungry….what could be worst…? One day he just started throwing food all around the house with his spoon... That was when I just lost it... Screaming child, food all over the place, my patience level close to zero and I was myself in a meltdown... In trying to save myself from doing something unreasonable, unthinkable, I just locked myself in the bedroom and cried it out, I couldn’t take it anymore… But eventually I won! Combining different approaches and trying to balance them based on Maksim’s needs has taught me so much. There is no single solution whenever you are faced with some problem. It is usually many steps on the way to achieving your goals. There is failure in the beginning because we have to slow down, think differently and “listen with our eyes” before we can actually understand our special kids. If you apply your thinking of what is best and how to deal with a situation and then, it doesn’t work that way, don’t get discouraged to try again later. Being flexible, willing to try new ways and lots of patience will help! It will take TIME, sometimes a LOT of it, sometimes less and it’s only because your child got his own pace, and every child has his/her own. So that’s how 2 most difficult years went by, eventually we got our spot to see the therapist in Hong Kong (waiting list can be really long). It became easier mentally for me as we had inputs every week. And every visit back to Mumbai we had such a positive feedback and encouragement from our OT. It also made me believe I can do it! In the next part , I will blog about a "small" change in routine and some relief. Please share your suggestions and experiences in the comment section.
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