The One with the Road Trip: Karan’s Big Adventure Part 3

Guest post by Adita Divecha, Karan’s mother

Note: If you haven’t already, read The One with the Flight (Part 1) and The One where Karan Goes to a Dentist and Pets a Dog (Part 2)

My husband, Rajiv, had to go to Pune for some work and he suggested that we go along with him. It was to be a day trip. We would go in the morning and come back by evening. Pune (it used to be called Poona earlier) is about four hours by road from Mumbai because of the new express highway which links the two cities. It used to take much longer earlier. Of course this highway has been there for quite a many years but is new to me as I have not been to India for the past eight years.

Anyway, we left early in the morning at 7.30am with Madhavi (Rajiv’s sister), at the wheel. Rajiv was sitting in front and Karan and myself at the back in the car. Karan is used to sitting in a car for long periods as he commutes daily to school in Sharjah from our house in Dubai. So he was very happy, looking out of the window taking in all the scenery. There was a little traffic on the way but not too much and once we were out of Mumbai, it was smooth sailing. We stopped on the way at a McDonalds outlet and Rajiv took Karan to the toilet. Then a little ahead we stopped again at a rest stop (in a small town called Khopoli, i think) and had breakfast. Karan did not want to eat anything there…He had already had his breakfast before leaving home. He ate a few of the biscuits he likes later in the car.

We reached Pune by 12pm and Rajiv met the person he was to meet and finished his work. Again, as Karan needed to go to the toilet we went to the Poona Club where he would be comfortable. Then we went to my cousin sister Padma’s place as she had invited us for lunch. Karan enjoyed himself there as he got to lie down on the sofa in peace (one of his favourite activities…hahaha) and he got his favourite chicken biryani for lunch. Later he had mangoes for dessert. So he was in a very good mood.

We left Pune around 4.30pm after a really great lunch and tea and having a really good time with Padma, chatting about so many things. Karan also was fine on the way but a little whining had started. So I made him listen to his favourite songs on my phone and he calmed down. The whole journey was uneventful but once we entered Mumbai, the traffic jams started. Due to the traffic jam and the incessant honking of the cars, Karan started getting upset and started crying. We had to stop on the way at a hotel so that he could be taken to the toilet. He seemed to feel a little better after that but as he was still whining, the music had to be played again so that he calmed down. We reached home finally at about 9pm after which he had his dinner. Karan went off to sleep very quickly as he was exhausted after his trip.

All in all, it was a very good experience for Karan and he sailed through with flying colours

The f-word for parents of kids with special needs via @LoveThatMax

Today, I got an email that I couldn’t stop thinking about all day long. It was from a mom on an e-loop I’m part of; she’s been lobbying on behalf of special needs families for years, and she invited us to attend a meeting happening next week. It’s about policy plans for our state’s Division of Developmental Disabilities. There will be a lot of talk about the Community Services Waiting List, which is what you have to be on in order to be eligible for housing for the disabled, as well as other support services.

The “f” word in my life is Max’s future; it’s not something I talk about a lot. On purpose. Looking that far ahead unsettles me. It’s what I had to learn to stop doing when Max was a baby, because the more I kept trying to envision what his future might be like, the more anxious and depressed I’d get. And so for years, I’ve set my sights on the present of Max and what he is doing, rather than what he might do someday. It’s been a good thing for both of us. A healthy thing.

I don’t have my head buried in the sand. We are in the early stages of setting up a special needs trust for Max. But the thought of Max in a home for the disabled? It makes me cry. I am tearing up as I type this, and I’ve had to stop a couple of times. My mind goes to bad places when I think of it.

Max in need of a special home?

Max without me and Dave?

How could we do that to him?

Who would protect him and take care of him like we do?

No, he could never go to a home.

But what if it were the right thing for him? He’ll need to be independent.

Would he be able to change his clothes himself or would there be someone to help him?

Would he be able to feed himself?

What kind of friends would he have?

What do those homes look like on the inside, anyway?

What kind of job would he get?

How could I not kiss him every day?

Would it be weird for me to visit every day?

And so on and so on. My mind spirals off into all sorts of irrational thoughts. And I know they are mostly irrational, given the fact that Max is eight years old and still has lots of growing to do and progress to achieve.

There is a home for adults with disabilities near a coffee shop we used to go to before it closed. A group of residents would come in sometimes, a mix of adults with mental disabilities and Down syndrome. I’d spy on them the entire time from behind my cup of coffee, watching them talk, laugh and enjoy themselves, as friends do. Sometimes I’d marvel at their camaraderie and feel glad for them. Sometimes I’d tear up as Dave would say “Awww, honey, don’t” because I kept picturing Max as one of them.

The truth is, I’m not yet at the special-parent developmental stage where I can think of this. It’s still too painful. And yet, what’s helped me help Max over the years is researching things that could benefit him. I know I should attend the meeting. From what I’ve heard, the waiting list for housing is very long, he’ll probably need to get on it sooner rather than later, and it would be good to at least learn about it.

I asked Dave if he thought we should go. “Yes,” he said, without hesitation. “Let’s educate ourselves.” He doesn’t get emotional about stuff like this.

So I am dreading it, but I’ll put on my big girl panties and go.

Saw this post over at Love That Max and identified 100% with it. I’m also guessing my Mom does too. Sharing it with others so you can see what we think about the f-word.