The One Where Mom and Daughter Weigh In

Read the past posts here:

Devina’s Final Thoughts
I’m exhausted. And I’m only 24. Every day, mostly the only thought I had was: “I cannot wait to feel that soft bed underneath my body and rest.” It’s tiring. It’s draining. And when you have no help, it’s even worse. You’re assaulted by feelings of not having enough time for anything other than your responsibility to your child and to your house. You end up feeling guilty for not having enough time. You feel alone. Sometimes you doze off on the sofa, or your eyes feel scratchy when you’re driving on Emirates Road because the monotony of that route definitely doesn’t help your sleepiness. But you do it anyway because you have to and nothing is too much for your child (in this case, my brother, but he feels like my baby most of the time!). It hits you that what you would’ve normally done only for a few years of your child’s life, you will do forever. It’s not exactly uplifting but when you sink into bed every day having gotten the job done, there’s a sense of satisfaction and the hope that when you wake up the next day, you’ll do it well, all over again. When you wake up, yeah you’re worried today is the day you’ll collapse and just not be able to do it anymore, but…you soldier on. Because this is your child. And if you don’t support him/her and don’t fight for him/her, then no one else will.

Adita’s Experience
It was a nice change though in the beginning I was feeling very stressed and not getting sleep because I was constantly worrying about both my children. Then slowly I got used to it. Since every day I normally do things with and for Karan, throughout the trip I was feeling very empty, like I didn’t have anything to do. I felt lost quite a bit because of that. Even towards the end of the trip, I wasn’t getting sleep properly, not because I was worried but because I’m used to waking up all the time to check on Karan. It was nice to meet people and just go wherever I wanted without a second thought because otherwise I always have to think about what Karan will be happy with. So liberating in a way. Everything is always according to his routine, but here I was free to do as I wished. I was going out for movies, staying out for dinner with family and friends…but I think I’m so used to this life, I missed my routine too! After 16 years, because I’ve been doing everything according to him, even though I went out and did everything that is fun, I don’t miss that sense of social life I think. I was sort of waiting to get back to my routine life. But it was definitely a nice change to get a few days off.

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6 thoughts on “The One Where Mom and Daughter Weigh In

  1. Fair play to you Devina for taking this on on your own – I have never managed to put together more than 24 hours of respite and we have a number of “angels” our usual babysitters who come to the house and take turns minding our kids so we can catch a breather.I understand how Adita feels. When I used to go away alone and leave my husband to mind my children, (and I made sure the Angels were coming and going to help him) I found it hard to sleep. You are pre-programed to sleep with one eye and one ear open and every little noise makes you jolt. I hope you can both find someone outside of your circle to trust and train to support Karan – just a few hours a week to start with then longer until you can always take time out. I wish there was a way I could help you to set this up…..

  2. Thank you Lisa, for understanding how I feel.It is true – I do tend to be on alert all the time, constantly trying to makre sure he is okay. It’s very difficult for me to tune out from that way of thinking. Which is why it’s very difficult for to trust anyone with him. I don’t know if it’ll be easy to find anybody or even if I’ll trust anybody. I can trust my daughter or husband but I can’t trust anyone outside the circle of family. This is why I don’t even keep a maid or helper in the house (which we can afford to do), because I will not be able to trust anyone else.I know it’s very difficult for me to do everything, but I do try…because I can’t trust anyone.

  3. Hey @lisamareedom … thanks for commenting and linking to our posts.Just carrying on from what Mom said…I don’t think she’d trust me waaay back in the beginning either (to be fair I was 9-10 when he was diagnosed), but as I said in this series of blog posts…just getting her on the plane was a right challenge.Many people have suggested she gets help but like she said…she can’t trust anyone. I see this trip as her first step in the right direction. I don’t mind doing this to be honest, but when I don’t have a break from work I can’t do it at all since I’m at the office for most part of the day.Also, in the UAE there aren’t many resources in this direction, which also adds to the issue. The only way to get help is to hire help at home, but there are none trained to deal with special needs here, so there’s actually no point in doing that. When we say hired help, it will be people to help with cooking/cleaning, but none to help with respite in itself.

  4. You must never feel guilty for needing time for self- as it makes you a better mother when you get back. And by allowing others to spend time with Karan you open up his world to new experiences, forcing him to adapt his communication to them. Mums tend to be “mind readers” a habit we pick up with our babies where we want to make sure that they are getting everything they need. But as children grow it helps if they have to use more universal communication so everyone can help them. And you get a break.It’s hard to find people, I did not trust “babysitters” or minders as they call them in Ireland. And my family did not help. So I asked the classroom assistants and teachers to come over to help- while I had a shower or did some housework. When I got to know them and they understood our routine, then I went out for a walk, or coffee or eventually dinner. I always asked how the kids were afterwards, explained any quirks – and then went out again. We pay them well, and during the toilet years we actually gave them extra for cleaning up big messes! But the girls who stayed became part of our community. One of our helpers started as a cleaner, but babysits too and even though her English wasn’t too good to start with, Grace got along with her fine using pecs! She does sleepovers now with both kids and gets along fine. We have actually had a number of Carers who were sisters, when one left to study or travel she recommended her sister – who kind of knew the kids through all the stories she had told. I know the UAE is starting to look at ABA and better interventions as the schools are recruiting in Ireland. There may be a chance to offer the staff extra work babysitting or even doing some home based education – where they can get to know Karan and help you to develop trust. We did home program’s for years using staff from The Saplings school for Autism, all of whom would babysit if we needed a break. Still do!When the “Angels” (helpers) are there the children behave differently. Picking up their own coats, using more communication, putting dishes in the sink. It’s good for them as I let them away with too much. And the best part is getting back to them after a hard day. I work now and sometimes it’s not fun, but when I see Gracie and have a giggle, pretend to be a dinosaur or lion, I enjoy it more than when I had to be a Mum 24 hours a day.I hope that helps. You two are wonderful to each other and Karan is very lucky xxxx

  5. You both took up an incredible challenge! It’s people like you who will be able to inspire change around you and hopefully into this city that needs to progress in this area. I hope things settled back into routine easily for you all 🙂

  6. Thanks again @lisamareedom. Mom hasn’t seen this yet; will poke her to have a look :)@princess2802 Yes we did. I think it was more of a challenge for her than for me to be honest. Yeah I’m hoping for more change in this country and in people’s attitudes in general in this regard…hopefully.

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