Raiyan has been looking a lot older these days... Maybe it's due to his hair being cut shorter than usual, or because there's less baby fat overall and so he's looking much slimmer these days ..and he's so TALL. Or I'd like to think it's also because he's communicating with us more now. Whatever the cause may be, he just seems older.
I know it's probably a bit premature for me to feel like this but in the past few days I have been feeling more nervous and apprehensive at the thought of my pweshes baby growing up. I'm sure this is something all parents go through with their children as parenting has to be the most difficult full time job in the world. Especially in this day and age of globalisation, where outside influences like TV, internet, mobile phones etc etc introduces a wide range of things to children at a click of a button when compared to when we parents were children, there just seems to be so much more difficulty in trying to raise a well balanced, healthy, respectful, honest, diligent and altogether "good" child now that we have so many things around them to be minded of, take control over and to protect them from.
I am of course especially more worried about raising an autistic child notwithstanding the fact that I have learnt countless numbers of things since Raiyan's diagnosis. My personal journey with Raiyan has seen me experiencing all sorts of conflicting feelings such as denial and relief, embarassment and pride, weakness and empowerment, isolation and unity, helplessness and enthusiasm and sometimes these are still ongoing and which of the two I feel really depends on a lot of things. I do happily report that the latter of the two feelings described is more prevalent these days than the former alhamdulillah.
Except perhaps for anxiety and confidence. Where I thought my confidence was more forceful, lately my eyes and mind are warily opening up more in the anticipation of Raiyan growing up. One noticeable fact with him getting older is that with him looking less like a "baby", his erratic behaviours that used to be written off as adorable now just makes him look more obviously different.
He is getting a lot stronger so pulling him up the stairs to take a bath or calming his tantrums are naturally more grueling and wearying..Having his 23kg body jump on your back to be funny is not so funny on hubby's aging spine (though piggy backs are still tolerable). Some, though not all, people may be perturbed with his desires to say hello or even to go up and hug every child he sees even though it's not reciprocal. These are just some of the minor concerns that I have that insyaAllah are quite tolerable.
But what I'm more worried about is the thought of him rebelling against us (yes, I did say I might be overreacting a bit..)! It just seems that with the therapy, we keep telling him to stop doing a lot of things he wants to do. Of course, I completely understand the need to do so because with him, it's really important for him to try different things so I can't just let him eat the same foods or wear the same clothes over and over again. And I completely understand the need to reduce his inappropriate behaviours like making the "P" phonetic sound repetitively (that makes him look like spit's coming out of his mouth) or playing with my elbow when he wants to be comforted as to leave him to it may mean he'll get stuck doing those things for a long time to come. And I know how important it is to control his intake of internet and TV for fear that he may start getting obsessive with them again.
But there has to be a point when Raiyan has a limit to how many "don't"s and "stop it"s we tell him right? And I can't help feeling so awful after finding myself saying those words at least 20 times a day. I mean who likes to be a nag? Jeff and I certainly don't.
I've also been reading more writings by autistic persons such as Temple Grandin, Donna Williams and recently this blog which have really taught me in a BIG way in trying to understand how Raiyan may think (granted I don't take everything wholeheartedly and literally since not all autistic persons are the same-but generally everything I read seems logical and makes lots of sense). I love reading what they go through and have went through, especially in reasoning out their behaviours and their needs to do so. Above all, it just reminds me that Raiyan is his own person with his own personality and even though sometimes I want him to act a certain way or talk a certain talk, I cannot deny and prevent him from just being himself.
That is the struggle that I find I'm going through a lot more these days. As having completely accepted Raiyan to be autistic, I have managed to do away with all those dreams of making him "normal" and "indistinguishable" despite having seen some news of such occurrences with other [ex?] autistic children. But I do not deny that I still have much bigger dreams for him than where he is now. I would love for him to be able to converse freely with everyone else. I would love for him to build deep and meaningful relationships with others. I would love to see him graduate from university and get a job. I pray for the day I can be confident with the idea of leaving him in this world when it's time for Jeff and me to go.
But at what costs do we have to take in trying to achieve the above dreams? Is it bad for me to hope for such things if along the way, there will constantly be at least a thousand don'ts and stop-its thrown at him?
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