Tag Archives: special needs

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.

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!!!

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.

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?

My brother: the actor!

Now, I love my brother very much. He’s the apple of my eye, my little pumpkin and a sweetheart. He’s also quite a fraud. And he pulls wool over my Mom’s eyes, and sometimes mine, quite convincingly. He’s a class actor in his own right.

Img_1997_20100910092449_pola

Case #1: Wearing shoes

Karan is quite capable of wearing his own shoes. Velcro ones that is; he can’t handle lace shoes whatsoever because he doesn’t understand how to tie them. Which is why we get him velcro shoes and sandals only. Anyway, he’s learned how to wear them, so you’d think he’d wear them on his own all the time. Right? WRONG.

When Mom tries to make him wear his shoes, or I do, he fumbles. And crumbles. And cries. And tries OH-SO-HARD but those shoes will stubbornly not go on his feet and we end up making him wear them.

In school, when his teacher tells him to do it however, they go on OH-SO-QUICKLY. I saw this for myself two days ago, when Chirag was at our house. We were getting ready to go out and I, in a fit of laziness, asked him to give Karan his sandals so I could make him wear them in a bit. Chirag told Karan to wear his shoes. I protested saying he wouldn’t do it. Thanks Karan, for proving me wrong. That little acting hulk (read: Karan) just opened up the velcro at Chirag’s urging and slipped his sandals on just fine, thank you very much. No crying, no protests, no tantrums. That’s it, I’m going military on you Karan. Watch out…I know you’re acting!

Case #2: Eating food

Karan can eat his food with a spoon. Me, I’m toughie on this. When I sit next to him, he scoops his food fine and eats it all and just struggles towards the end when there’s very little food left and slightly harder to scoop. When Mom’s next to him, he takes AGES and ends up making her scoop for him. That little actor.

And he can chew his food just fine. Didn’t he chew all those chicken kababs and Toblerone chocolate in a hurry two days back? Ummm yeah, not when it comes to food he doesn’t like. He’ll keep it in his mouth for ages and just stare at us with his mouth stuffed but NOT swallowing. Karan, eat those veggies NOW (those who know me might point out that I don’t eat any veggies anymore; I’ve done my time. It’s his turn now!).

Although, once he turns his Puss-in-Boots eyes at us … no, no, stay strong and firm Devina, stay strong and firm!

Moments of laughter with Karan

Guest post by Adita Divecha, Karan’s mother

Looking after a child with special needs – especially one who is diagnosed as ‘low functioning’ on the autism spectrum – is quite a challenge. There are so many things that come up on a day-to-day basis that leave you confused, angry and helpless. At times the whole day goes by, and you feel you have not achieved anything positive.

But life with Karan is not all problems and difficulties. He provides us an opportunity to laugh too. There was this one particular time when he saw Devina sitting next to me and chatting. He came running and jumped between us and put his hand on my mouth to stop me from talking to her. He then pushed Devina away and hugged me … and both Devina and I started laughing. Then there was the time when he used to wait for Devina to come home from college. When she was back, he would follow her around the house and then go up to her room where she used to put on the songs he likes. He would sit there sighing with content. He used to be Devina’s tail when she was here and still is when she comes on holiday. He misses her a lot I think, because whenever she comes back, he ignores her for a few days to show her that he is upset with her for not being there and then warms up to her again.

Do you think autistic children know what death means?

That’s a question I asked myself again and again and again when my Gappa (my mother’s father; I call him Gappa as my child-self couldn’t pronounce Grandpappa properly and the name stuck) passed away last year.

Did Karan know, or understand that his grandfather was no more?

Death is a difficult concept for me to get around as well. The answers of what happens after people die are thrown about by religions, asking us to just accept what they say: Heaven, hell and what-have-you. Abstract concepts, but nothing real. If I have such a hard time understanding it, obviously it’s hard for him.

But what I want to know is, did Karan understand that his grandfather was not coming back? Did he miss him? Did he ever think, oh I wonder where my Gappa is? At the funeral, Karan was a gem – didn’t trouble us at all. Almost as if he understood this was serious.

My Dadi (father’s mother) is currently breathing only because she’s hooked up to a life support machine. Karan has interacted with her only on family vacations to India and when she’s visited Dubai. He hasn’t gone to India in many years, because it’s a nightmare getting him on a plane, and travelling with him is perhaps do-able if my mother and I have male help. For one, Karan is massively huge for his age (I have found out that he’s much taller than me now and he’s quite hefty too), and it’s very hard – although not impossible as my mother and I have found – to take him to a female toilet when he wants to go, so a male presence has been a must for the last few years.

Anyway, he’s normally wary of new people, but usually by the end of my Dadi’s trip – or ours there – he has warmed up to her (yup he had to go through the warming up process every time). The life support machine will be switched off in a few days, once my father gets there, once I get there.

We can tell him all we like about my Dadi, but will he get it? Can he comprehend it? I know he misses people if they’ve been there constantly in his life; it’s certainly the case with me. He misses me, judging from what my Mom tells me.

Does he know what death means? I don’t think so, and I don’t know if that’s a blessing or a bane.