Author Archives: Devina Divecha

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.

via lovethatmax.com

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.

Karan’s big adventure – part 2

Guest post by Adita Divecha, Karan’s mother

Karan has an extra tooth which has come up on his palate next to a molar on the right side. An appointment had already been taken with the dentist, who happens to be my husband Rajiv’s cousin, for the day after we arrived.We arrived at the clinic in time and were made to sit in the waiting room. Karan was very quiet and kept looking around fearfully as I guess he could sense we were at a doctors clinic. It always smells different in a clinic and he always seems to know when we’re at a hospital or clinic.

Finally, we were ushered in. One look at the chair and he refused to sit on it. There was no whining though. He shook hands with his uncle ,the dentist, and gave him a big smile. He opened his mouth slowly after being coaxed a few times, all the while standing and holding one of my hands tightly. This had to be done a few times but Karan did it without whining. This was a great relief. Anyway, the doctor said that as the extra tooth was not hurting him in any way there was no need to remove it .There were no other problems like cavities so no cause for worry. Only his teeth are too sharp so as a preventive measure they should be rounded or blunted. This will have to be done in the next few days under anaesthesia.

Rajiv’s cousin sister Kaajal who lives in the US has also come down to Mumbai with her husband and two kids. They came over to meet us at our home. Karan just waved at them when told to look and say hi and went and sat on the sofa playing with his ball.That evening all of us went over to Rajiv’s sister Madhavi’s home for dinner. She has a dog, a beagle, called Toto. When Karan heard him barking he was a little taken aback and kept staring at him. Toto started jumping and licking my hand while I petted him. Karan had gone and sat on the sofa and suddenly Toto jumped on him and started licking his face. All of us kept looking at Karan anxiously but there was no need for concern. Karan was laughing loudly and letting Toto lick him. Then he started petting him, pulling his ears and touching his tail, putting his hand in Toto’s mouth, clearly unafraid. And Toto was letting him do this without growling. It was quite amazing. And then Toto just sits next to Karan at times and Karan just touches his back and at times they both ignore each other. But Karan is not afraid of Toto and neither is Toto afraid of Karan. It is really amazing how animals understand children like Karan.

Karan’s big adventure – Part 1

Guest post by Adita Divecha, Karan’s mother

Both Karan and I have not been out of Dubai for the past eight years. Sometimes because I did not want to go and sometimes because there was no one to travel with me as I felt it was a bit difficult travelling with Karan alone. Most of the time our relatives would come to Dubai to meet us. This year we finally decided to go to Mumbai for the Christmas and New Year holidays as my husband Rajiv was there with us. I had been talking to Karan about the trip for many days so as to get him prepared for it. I dont know if it registered in his mind as there was no response from him but I like to think that it did.

The day finally dawned and we left for the airport. He was very calm and walked through all the checks and we were finally sitting in the business class lounge. He refused to eat anything there and as the time to departure came closer, Rajiv took him to the toilet. It is impossible for me to take Karan to the ladies toilet now as he towers over me. He is 172 cms tall and I am just 155 cms. And he cannot be sent to the toilet alone so I have to have a male presence with me. Anyway, the departure gate for our flight was very far from the lounge and when we mentioned that Karan was autistic and might get upset because of the crowd and the long walk, the Emirates airline ground staff arranged a buggy to drive us there. This was really excellent but Karan refused to get into the buggy. When we tried to push him in he started jumping up and down and screaming at the top of his voice. We got many stares by the people around us: some amazed, some compassionate and some disgusted….something I am very used to. It does not bother me anymore. Finally, I got into the buggy and held out his favourite koosh ball and after hesitating a few times he got in and then Rajiv got in after him so that Karan could not jump out again. Karan was ok after that and we finally boarded the flight.

Karan was very good throughout the flight. He sat between Rajiv and me and kept playing with his ball. Only while taking off and landing, he held my hand tightly as the noise was deafening and I guess he was frightened as he had his scared-deer look on his face. I had made sandwiches for him incase he would not eat anything on the flight but the main course for lunch was his favourite tandoori grilled chicken. So he enjoyed eating that and did not want to eat the sandwiches. But he refused to enter the toilet on the plane. I guess this was because it was too tiny and looked different from what he is used to. He went to the toilet only after we landed at Mumbai airport.

However by this time he was very exhausted and the noise of the people around him had started to irritate him and he started his whining and crying.We did not have to wait a long time for the luggage which came quickly. The customs officer took one look at Karan crying and stomping his feet and just waved us through which was a blessing. Karan calmed down once we were sitting in the car on our way home with his favourite songs playing on my phone.

All in all, the journey was quite good but i dont know how he will be able to cope if the flight is a longer one. Anyway, this was a good start and I hope it will get better and better.

Devina: I’m quite excited that Karan is on this trip…I think it shows how much he’s progressed over the years. I don’t think he would’ve handled it this well a few years ago. I’m so proud of you Karan!!!

Getting married when a sibling has autism

I think, until less than a year back, I wasn’t sure (because of many reasons) whether I would ever get married.

Karan’s autism is such that it is unlikely he will ever lead what is considered a full, normal life and will need to be cared for, for the rest of his life. My mother and I are not interested or will even consider sending him to a residential care centre; it’s completely out of the question. Karan stays with family. So when it becomes impossible for my mother to take care of him, it is up to me – as his one and only sibling – to be his parent. I admit, even though right now I’m not his regular caregiver, I feel like I have my first child already.

It’s not a responsibility I grudge. I’d considered a long time ago whether I would marry because that would mean finding a man who was comfortable and accepting of Karan. I had heard enough horror stories about this: a woman my family knew had a tough time finding suitors because every time the nugget of information came up that her sibling had special needs, the parents of the man swooshed in and shook their heads. No doubt the prospective suitors were conspirators in their refusal too, but I think some men can be amenable to the situation while older generations who are comfortably ensconced in their disgusting belief that “special needs” is a dirty phrase step in.

Here’s the thing: I understand fully well the implications of marrying into a family that has special needs. But then again, I could reject you for having cancer in your family, you for having heart problems floating in the fringes, you for arthritis and you because of diabetes. When it comes to rejecting a proposal, there are a million reasons to say no.

And yes, if a man cannot accept my brother, it’s a deal-breaker. I’d rather live alone caring for Karan than live with someone who spurns him, thank you very much.

Going to a “normal” school

Guest post by Adita Divecha, Karan’s mother

Karan loves going to his school. He attends Manzil centre for challenged individuals which is located in Sharjah. He has been going there since 2006 and is very well settled. The drive to the school from our house takes at least 45 minutes to an hour depending on the traffic. But Karan is doing well there so it is worth it and I dont mind the commute. He seems to recognize the way there because when just recently, we went back to school after it reopened in September after the holidays, he got very excited, started rocking and laughing in the car. I have to put a CD of his favourite songs so that he is calm and enjoys the ride.

This year his school has started a partial inclusion programme with The Millennium School in Sharjah where all the students from Manzil attend a full school day there. This happens every Wednesday. All Manzil students participate in the assembly, mass P.E., sport, music and art & craft sessions. More activities are being planned to ensure maximum benefits. Some of them are swimming, computers, basketball, tennis, football, athletics, badminton, clay modelling, painting and other art & craft activities. Students will assessed by staff of both schools to see how each one benefits. Some of the Manzil students attend the classrooms too.

Karan seems to like going to the Millennium school too. He gets very excited when I take the road to this school and park in front of it. He loves playing basketball it seems…no small wonder as his favourite toy is a ball. Karan does not attend the classroom because he is non verbal and does not read or write but he takes part in the other activities.

This is a great initiative by both Manzil and The Millennium School and I am sure it will benefit the students immensely. I am very pleased because my Karan seems very happy too.

Would you stand up for a special needs person you didn’t know? via @AutisticHelper

via autistichelper.org

I spotted this video yesterday on AutisticHelper.org (from Twitter, via @cookiemonster82) and started sniffling and shedding a few tears while watching.

Edit: The video seems to have been taken down, but you can view it here

Karan’s had to deal with similar verbal outbursts and non-verbal glances of disgust. And it’s not like he can respond, being non-verbal and blissfully unaware (as far as we can tell) of insulting looks/words that come his way. Mom and I usually blast whoever it is if they say something, and throw back equally dirty looks if we get those.

Would you speak up for a special needs person, or stay quiet like some of the people in this video who thought it wasn’t their place to get involved?

On my part, I’d urge people to get involved. It raises awareness and no one deserves to be treated with disrespect. No one.

Hating people who say autism can be “cured”

I mean, what do they mean “cured” or “healed”??? It’s not a disease that it can or should be “cured”.

These messiahs of hope (I blame Pandora) preach about how parents should do XYZ and ABC therapies because that “definitely works”. Uh. No.

Just like every person has different taste buds, autism affects everyone differently. As I’ve said before, when you meet one person with autism, you meet just one person with autism. Therapies are a guideline to certain things that may help to teach the autistic person skills to deal with the neuro-typical world. But it’s not one size fits all. Just because one therapy works for one person, doesn’t mean it will for another. It’s a trial-and-error process. Compics and flashcards work for many, my brother doesn’t really like them. Period. He prefers signs. Surely I’d be stupid to keep forcing something on him when he doesn’t like it…so what if it works for your child? It doesn’t work with him.

I give you: Jenny McCarthy. The Horse Boy.

No, no, NO!

My brother doesn’t need to be healed or cured or whatever other nonsense. He needs to learn how to handle the world. Do I wish he didn’t have autism? Sure, sometimes I do in my most despairing moments. But his autism makes him the sweet and innocent boy he is, not some crazed teenage boy (for which I’m sometimes thankful; have you seen what some teenagers get up to nowadays!?).

If I see another person telling me how to heal or cure my brother, I’m going to blow a gasket. Autism is life-long. It’s not going to go away just because you say so. The more you preach to the world about how your child has beaten autism, the more I’ll think you’re a quack and the more I’ll think your child was incorrectly diagnosed in the first place.

Shutdown or speak out? What November 1 means to me.

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Twitter – that wonderful giver of delightful and disastrous news – was where I first read about Communication Shutdown. The web site said:

“It’s a global initiative to raise much-needed funds for autism groups in over 40 countries. By shutting down social networks for one day on November 1, we hope to encourage a greater understanding of people with autism who find social communication a challenge.”

On the face of it, I thought: “Well that’s great…they’re raising money for a good cause!”

But somewhere in the back of my mind, a tiny itch was forming.

It eventually hit me that it was the second sentence I had a problem with. How on earth is avoiding Facebook or Twitter supposed to help understand how people with autism feel when it comes to communication?

I fully understand that currently, social networking is a major factor in communication between people. However, it’s not the end of it. Let’s say I log out of Twitter or Facebook for the entire day. I can text, call or knock on my flatmate’s door and strike up a conversation with her. My not logging on to various social networks has nothing to do with social communication. If anything, it might help wean me off my Twitter addiction (which is an entirely different story!). Say I even manage to stay offline for the day. I’ll be back to tweeting and Facebooking the next day, won’t I? I’ll be smug and self-righteous about how I played a role in Communication Shutdown and now I TRULY understand autism. Not.

My brother has autism and I still don’t understand it fully. Until I moved to UK last year, I dealt with autism on daily basis and I still don’t understand it fully.

How dare anyone think that by giving up Facebook and Twitter for 24 hours, they will understand what it is like to be autistic?

I’ve seen various reactions on the internet that don’t agree with Communication Shutdown. I know where they’re coming from, but I don’t see the point of those either. April is Autism Awareness Month and innumerable events take place then in many countries to raise awareness about autism, much like October is breast cancer awareness month, November (or Movember as it’s called!) is prostate cancer awareness month. Surely these are there to facilitate awareness of the causes. Did we really need another day – that too, a contested day – to show awareness of autism?

You want to raise money for autism, go for it. But don’t tell people they will have a better understanding of social communication problems that autistic people face. For one, not all autistic people communicate the same way: my brother can’t talk. Another child with autism can. If you’ve seen one person with autism, you’ve seen ONE person with autism. This is NOT a one-size-fits-all scenario. And second, many people with autism use the internet to communicate, or use technology to do so (my brother can’t…see why one size doesn’t fit all?) … telling “normal” people to get offline is quite possibly going against how many autistic people communicate.

If you want to understand the problems my brother faces however, get offline, chuck your phone, stop talking to everyone and don’t communicate even by signs. And shut your eyes for good measure.

Then come and tell me you understand a bit more about autism.

For the record, I’m not shutting down. It won’t give me any understanding of what my brother goes through; I’d rather continue with how I always do. Autism is a part of my life. I’d rather stay connected, engage with others and spread whatever awareness I can on a regular basis.

Why would you hurt my brother?

Abuse. It comes in many forms: physical, emotional and mental.

When a person cannot communicate well, when a person is unable to defend himself/herself, it’s sad that that person gets picked on in some way or the other.

I read this open letter to DQ from Alterna-Mom’s blog and was aghast. A child with infantile autism and speech delays was mocked. Simply because of the way she speaks? Do you know how much time it can take for people with autistic disorders to communicate and be comfortable with themselves in unknown situations? How is it possible that compassion, understanding and tolerance disappears when it comes to something different?

In the comments of that blogpost, a reference was made to a UK court case. I immediately Googled it and found this: an Aspergers teen was reportedly tortured for days but the people who did it were let off with a community service rap (I do object to the use of the word ‘evil’ in the first sentence; not because I don’t agree, but because that doesn’t sound like balanced reporting, no matter how depraved the act was).

According to the news report, and I quote:

They kicked and stamped on his head, repeatedly punched him in the chest, beat him with a tennis racket, scratched his arms and leg with sandpaper, and threw him down a steep hill.

The terrified teenager – who suffers from autism and Asperger’s Syndrome – was also pelted with dog mess and forced to drink alcohol until he passed out. And, in a final humiliating assault, they applied tape to his genital area before ripping it off.

Community service orders and a curfew was handed out to the offenders.

A curfew. I had a curfew – still do when I live with my parents – and the worst thing I ever did was not clean my room. And my curfew wasn’t even in place because of that!

Why would you hurt my brother or someone like him? For fun? Because you’re bored? Because you think it’s funny to hurt the defenceless? My heart bleeds for the girl who was mocked and the 17-year-old boy who endured what he did.

Really … Why would you want to hurt my brother?

I judge my friends by how they treat my little brother

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via 4.bp.blogspot.com

It’s true. I do.

When I make new friends anywhere, it’s important for me to observe them when they meet Karan. Or if I mention he’s autistic, I want to see what they say. I’ve had a few people say they’re very sorry and I immediately think of ways to avoid them. I mean, I love Karan and I’m not sorry for who he is. Yes, it would’ve been easier for everyone – and even more so for him – if he wasn’t autistic…he would’ve led a fuller life, but his autism makes him who he is and I love him for all his quirks. Yes, even when he chewed my Lil Ms Chatterbox bookmark. And tore my t-shirts. And spat over my photo frames. Okay maybe I got a little mad. Moving on… 😉

It’s important for me to see how they behave around him, if they’re comfortable or not. Another indicator of this is whether they include him in conversations. I’ve had people pretend as if he wasn’t there – their logic I suppose was that he can’t understand us (or so they thought) so no point in talking TO him. People who talk to him…I appreciate them.

So yes…I judge YOU based on how you treat my little brother. Sue me.