Ok so we had our video shown on national TV and we were interviewed on the morning talk show – both of these I had informed beforehand on this blog and just in case the message didn’t get across, I even smsed a number of people I consider friends that I thought were close enough to care about this side of my life to go and watch it.
Unfortunately, rather than moving a step closer in trying to get these friends to understand this part of my life, I have been going borderline crazy going round in circles wondering why none of them (except 2) gave any feedback on the two shows and Learning Ladders efforts in general. In fact, most of them didn’t even acknowledge the sms I sent. And when I did get a response, it was “were you nervous?” “oh I saw you on tv” and “I saw your brown baju and immediately recognized it to be you.”
One side of me does really think that other people have their busy lives and I really don’t blame them if they didn’t watch it or if they did, maybe it was just in the background and they didn’t really listen. In that sense, I am far from a narcissist who is insisting her friends watch the shows just for the sake of ME appearing on TV. The only reason I wanted my friends to watch the show is because all this time already, they have hardly showed interest in me raising an autistic child and my efforts with the society. I just laid that down to lack of understanding which again, I completely do not blame them for because autism is indeed such a complicated issue. Which was exactly the reason why I badly wanted for them to watch the video and the interview because it is there that they can begin to understand what autism is because once in a while, I would really love to comfortably talk to them about it. Sometimes it does hurt to know that this gigantic part of my life, I really can’t share with my close friends and instead here I am sharing it with the world. I wonder if it sounds absurd to some or actually, as I am slowly beginning to accept, is this merely part of “real life”.
I think what bothers me the most is just not knowing why .. I absolutely have no idea why they don’t talk to me about Raiyan, about the society, even the blog.. Do they think I’m just overreacting and that Raiyan is nothing for cause of concern? Are they really so scared of it that the less they know, the better? Am I expecting too much just for a simple “yay! Good job!” ? (which I incidentally got from one galpal-thanks Za and I know you read this blog too.. I appreciate that so much you cannot even imagine!).
All I know is, it is another struggle that I have to go through. To put up a front and to act like I don’t care that they don’t seem to care because in the end, I still believe they are good and dear friends but for whatever reason, I just can’t seem to reach out to them about this. I have to accept that this part of my life just stays with me (and the readers of this blog haha!) and to stop having any expectations anymore for my friends to show interest in it. To give them the benefit of the doubt, I really do believe that there is no ill reason for their lack of concern. They, along with everyone else are really busy with their lives and I’m sure I have been guilty in the past of being careless too.
As you get older, it is so strange how things just turn out to be something that is beyond your control and you just have to go with the flow and accept it. I never expected to be uncomfortable and conscious talking about Raiyan and the society to my own friends but if it’s going to happen, there’s nothing I can do But actually it still isn’t so bad as I made it out to be. I still have the best laughs with them and I still talk to them about everything else and I still trust them to be there for me when I really need them. Plus at least they don't see Raiyan any differently from any other child. And deep down, I still have hopes that one fine day, they will come round and I would be able to talk about this to them all the time without feeling awkward. That time is just not now, I guess.. but wwhhhhyy?? Sob sob..
PS. The title is an emotion invented by Raiyan- a mixture of “ignored and annoyed”. So if you ask him, Raiyan how do you feel when Alisha plays with your toys and you don’t want her to? He’ll say “ignoyed!”
13 comments:
Dear Pweshes Mama, I would love to catch your programme. Would it be possible to youtube it on here?
Also, I don't know if you've come across it before (I'm sure you are way better informed than I am) www.thetransporters.com - plenty of research on emotion-recognition, and I think it's a pretty cute alternative to another popular animated train show!
And I do empathise with you. Sometimes friends may only see your strength and resiliency. Do reach out to yours - sometimes they just need a little reminding ;)
Take care.
Hi dk, you know I actually have not heard of the transporters! :-S!So I quickly went to the link you gave me and it looks reeaallly good and will try and get it for Raiyan soon! Emotion recognition is definitely one thing we are seriously working on with him now. Thanks!
I will try and upload the video onto youtube soon including the rampai pagi interview as soon as we get a copy from RTB.
And thanks for the advice. Deep down I do know that's really the case and I should expect myself to look vulnerable and ask for help directly also!
Thanks so much for your comment, I really appreciate it! You take care too :D
They have no idea what you have done and how much effort it takes for therapy, etc... No clue. I have some groups of friends who love to hear about my son and his therapy and progress, and then there are others who have their own lives and are just not as interested. I so enjoy the first group. And I really kind of have had less contact intentionally with the other group. It's not that I don't love the other group, but who has time when you are working on therapy and reinforcing it in the home for your son? I think I will have more motivation for friendship with the disinterested group in the future, but I also wonder if this is showing me where loyalty and true friendship really is. I am here for you, although I am very far away on the globe!
Hi Family- your comment was exactly what the doctor ordered when I posted this entry.. I really needed the assurance that I'm not alone and I know from what I have previously experienced, this blog is a great way to reach out to people who understands how I feel- even though she may be halfway across the globe!
Thanks so much for sharing what you go through. I also have family and friends that are genuinely interested and sometimes I'm the one who still finds it odd to talk about it to them as I'm just so used to feeling so awkward at other times! For those disinterested ones, I guess they really don't realise how intense and what a big part the therapy and the challenges with autism play in our lives and as you said, no one else would have a clue unless they themselves live it every day. Thanks for reaching out to me- that just made making this post all the more worthwhile (apart from the need to just get it off my chest!)
Hi honey! Firstofall lots of hugs. I truly think you're an amazing person to try to raise autism awareness in Brunei, which I'm sure is quite a rocky road. It takes a lot of courage to face the fact that autism is real in a society which I've understood would rather deny it's existence. I guess the fear factor, could this happen to us, is still something that controls people's attitudes quite strongly. Rin, I wish I'd been able to see you on tv, but I'm sure lots of people did see you and you gave them something to think about and maybe even opened up their thinking!! That is special. Raiyan is such a lucky boy to have you as his mom! So all I can say is that I truly raise my hat to you and appreciate you! xxxx
Hi honey! It's always lovely to hear from you! you know in my lowest moment last Sunday I was weeping to Jeff wishing I can go to Finland to see the one chum I have that would understand! So I'm not at all surprised that you had left a comment here- thank yoooouuu so much. Your words of encouragement has always helped me and the idea of how advanced Finland is in caring for autism and special needs children is so inspiring! I will try to upload the shows onto youtube once i've figured out too so you can watch them and you can tell me what you think! (though the interview was in malay butknowing me halfway thru I started to speak in English anyway hahaha!).
Again, it's so nice to hear from you again and big hugs back to you too :D
he came up with 'ignoyed'? how brilliant!
reading your disappointment with your close friends, i can't say that I relate to your feelings, but what I do know is we can't make people to see things the way we see it, or share the same sentiments as we do. Sometimes people just don't know how to deal with an issue as personal as this, they think being uninvolved is the next best thing. Sometimes, we need to be direct with them what our expectations are, coz they really have no idea!
Hi Ka! I have no idea why some friends block out that side of your life. But I do know that you do a great job with or without their interest - which shows a lot about the strength of your character! =) Big hugs!
Actually he didn't purposely came out with it- it's more of he himself getting confused with both ignored and annoyed when we were teaching him those 2 emotions that when he said ignoyed, we actually thought hey that's a good one and so we just let him use it!
Thanks for the words of wisdom- I know I need to try harder to be more direct but I guess I'm still too scared. Having an autistic son is still a subject so close to my heart and because there have been instances in the past when I have felt ignored or awkward when I tried to talk about it (I guess it's because autism is such an uncomfortable thing to talk about),that's basically put me off from wanting to directly address it again. I felt it was easier to just ease them in by asking them to watch the video first, as I thought I can comfortably talk about it once they understood it a little bit more. I guess my mistakes there were that I still had some level of expectation from them and also, by not talking about it all this time beforehand, I probably gave the wrong impression that I don't want to talk about it! DUH- it's a vicious cycle really..
Anywho, I do hope it gets easier in time. Maybe this year the diagnosis is still so fresh and the therapy is still so intensive that my sensitivity is still at its peak. But I hope once I'm more at ease and confident to talk about it openly, I will try and be more direct about it! Thanks again!
Hi Cuz, I really don't think they are deliberately blocking that side of my life. I really think it's nothing more than them being too caught up with their own lives which we are all guilty of at times! As you can see from my loong reply to raggedyanne above, I do realise i'm conflicted between wanting to talk about it more but not daring to do it directly to them for fear I get ignored and for fear I put them in an uncomfortable position by "pressuring" them to talk about autism. It truly is still such a misunderstood subject and some may think I overreact but seriously, I have gotten some pretty awkward reactions in the past- that after everytime it happens, I vow NEVER to talk about autism directly to another person again! Which is why this blog is so important because it's the only place I can comfortably reach out to otehrs about it and get feedback without having that awkward "silence" moment hehe.
Of course, in the bigger picture, I am always in a good place because i know you have always been there for me and Raiyan and I am forever grateful for that! Thanks so much cuz and big hugs!
This is such an interesting post and commments! I think it touches at all of us parents with children with autism, and also others. I just have to say that I have less tolerance for peoples intolerance of autism or my life that I have had in the past. I find myself desiring some people much less, and desiring to listen to them much less--than in the past. I am meaning people who in the past have given me signals that they are not interested in my life (and much more interested in their lives!), but who are now showing me more clearly that they are not interested in others' lives (showing me this by their obvious disinterest in my son's autism and therapy and recovery time). I wonder if it's just showing me who the selfish people vs. unselfish people are more clearly, or showing me who really cares for me truly and who doesn't, or maybe just peoples lack of social skills! So confusing. But one thing is for sure, your son and my son and lots of children are getting better due to their parents helping them. I guess that just makes me happy.
Hi Family, I do think our circumstances are kinda unique in the sense that with autism, the diagnosis, the intensive therapy, the worries of how it might affect our other children,the worries that a younger sibling may have it too,the fight to get services the type of treatment to choose, the financial troubles, spreading awareness etc etc (the list is neverending!) takes such a gigantic part of our lives that it's really difficult to just switch off from it and pretend that it doesn't exist. The reality is, to these other disinterested people, it really is completely alien to them so it's no surprise that they really cannot emptahise. I can imagine that if any of my friends are going thru some other major non-autism problem I'll be concerned when it happens but what usually happens after that is people just get on with their own lives and they start to slowly forget. It's just that with us, after the autism diagnosis, the struggle continues and it's such an active and non-stop endeavour to deal with autism and recovery. We really can't expect others to understand if they themselves don't go through it too.
But as you said, all of us autism parents have each other (well at least those that are not wasting their time fighting over this or that! haha) and just to see the progress of our children every single day makes all our efforts and sacrificing time away from our friends worthwhile..
Hey B. I am sorry you feel that way about some friends (I'm assuming they're my friends too?). I dont know for sure why they dont seem to show interest in this subject but as for me, I used to feel uncomfortable talking about autism because I didnt know much about it then. And when we meet up, I always tried to refrain from talking about my boys' antiques (you know how they are, reading from my blog) and if I did, I always felt guilty after that. I had this feeling that I had no rights to talk about my children to my friends, especially to you. Maybe some friends feel just the way I did. But your blog has taught me alot and given me a better insight to what Raiyan and your family are going through. Now I realise that Raiyan and my boys are not so different afterall - after that Raya gathering at L's, I feel that our children can be good friends (Aqil asked about "si-Raiyan" many times after they met!). When I got your message about the programme on RTB (sadly I missed the Rampai Pagi, I was at work), I was really excited and got Mr Pynk to watch with me that night. LOL!
Also, I thought you should know this although I bet you've heard this from a lot of other people BUT me; You're a great Mom and Raiyan is a lucky lucky lucky boy! I'm very proud of you and Raiyan's achievements - I am sure all our friends feel that way too..
p/s: Let's meet up soon? ;)
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