Sunday, January 3, 2010

Messing With Perfection

I've been thinking over the last few days about the amount of effort us autie parents spend trying to build connections between our kids and the "real" world.
The question that's been bothering me is this; are we doing it for our kids, or are we doing it out of selfishness?
We aim, through schools and services (if we're lucky enough to have any) to teach our kids social skills as well as  academics.
But by teaching social skills, are we only trying to lessen our own discomfort..(oh what the hell, let's call it what it is embarrassment) by forcing them to sit quietly in places they feels threatened in, to pee in places that cause them distress or to keep their  intensely uncomfortable clothes on in public places.
Is it because we want our child to "fit in" and therefore have a happier existence, or is it to ultimately make life easier for us?
Bob is quite happy to watch the same episode of Dora over and over (and over), and in't embarrassed when he poos in his pants.  He isn't concerned about being perhaps perceived as rude when he doesn't engage in small talk, and has no qualms about leaving a party when he's had enough.
Sometimes I am ashamed of the arrogance with which we forcibly drag our kids from their happy world...who do we think we are to tell anyone that their way of life is not valid?

It really bothers me.

I haven't worked out an answer for myself yet.

What motivates me mostly to keep working with Bob (even when he really doesn't want to) is that I know he is a very clever little boy and his sensory and communication problems could prevent him from achieving his full potential.  I know in my heart that this is for his benefit...that already he is much happier as he is (and will be) rather than the alternative (without intervention, I picture him silent, self-injuring and deeply unhappy).

What also keeps me on the rocky road is the fact that one day Bob's Dad and I won't be around to interpret for him, or explain that when he says his jumper is "crying" that it's wet and he wants to change it.  Much as I hope Toads no.1 and 2 will be involved in his life, I don't expect them to be responsible for him.  Bottom line, Bob needs to learn as much skills as he can to help him cope with life, hopefully as independently as possible.

I am very uncomfortable with trying to change him, though, no matter how much I justify it.

I guess because I love him unconditionally as he is, it doesn't sit right that I'm also saying an upgraded model would be more acceptable. me and my discomfort are going to potter off  and make some tea (I've single handedly kept Lyons afloat throughout the recession).  Any of your thoughts on this would be most welcome.


  1. Spot on Jean Jeannie (make me a cup while you are up)

    I think it is our job to get our kids to a point where they can choose to fit in or not. Poopy pants do not win friends or influence people, but being straight talking or even using creative alliterative language CAN be a skill- just as long as it is their choice. I think we are not upgrading our model, just spending a lot of time, and yes a LOT of money retuning. An investment of love, which you so abundantly have, helps more than anything.

  2. I've often run that question through my head on nights where sleep evades me and though I don't have an answer, I think the justification I am happiest with is that if I was to apply the same reasoning with the older two, and indeed the population in general, could we truely get through life unscathed. It's also to protect them from ridicule in years to come. The toddler with his hand down his pants we laugh with but there would be no laughing involved if we were to see a grown man publically exposing himself. I guess there has to be compromise... To teach our little ones that they need to have certain social rules, but to let them have freedom to be naked etc at home. I have no intention of trying to change my little girl to improve her, to me she's perfect as she is, but will have to help her understand certain social rules to make her life easier. She can flap or stim to her hearts content and collect clocks and kiss the Hoover, but I can't stand back and let her run naked through Tesco (it's FAR too cold lol) xxx

  3. Very valid question Jean.

    You could also ask should we not adapt to fit in with their world?? Who' s to say that our world is better??? It seems a hell of a lot better in theirs!

    But is it?? Are they only there because they can't cope with their perception or understanding of our world and all the sensory distractions etc involved?? Is our world a better world for them when they're helped (through our CONSTANT work and interventions)to understand it better and fit in??

    I guess only our children can answer that. If they can. And if the interventions and placements in place eventually help them to express their feelings. "My jumper is crying" is a wonderful expression of Sir Bob's feelings!! I love it! He's getting there....if there's where he wants to be.

    I suspect it is. All I can say is that i now have a much, MUCH happier WiiBoy now that he's learned to fit into our world. He's learned to use words rather than a 2 hr screaming tantrum to express his feelings.

    He's also learned that simply saying to another child " wanna play?" is a much more effective way to make friends (which he ABSOLUTELY loves to do but couldn't previously) than making silly faces and rude noices. The latter method causes children to give him the "he's a lunatic" look and walk away. Now, That's heartbreaking to watch!

    If we hadn't helped WiiBoy fit in I'd never know how he feels and he'd never have fittedin with his classmates as well as has.

    But that's WiiBoy. I do suspect it applies to lots of our children though???

    Excellant thought provoking post missus!

    All I can say is trust your own instincts (subject of my next post!)....Sir Bob will tell you soon enough!! xx Jazzy

  4. I reckon this is a question we've all asked ourselves at some point. All i can think is that i believe that Button is not always happy in his world - he doesn't enjoy being scared of hand dryers, or being anxious about changes in his life. He does however enjoy being able to do what he wants, when he wants, and that is not always safe or practical. I look at myself as not trying to change him, but helping him to learn to cope in this scary world. He has no desire to make friends, but he does want to experience life - and as his mom, it's my job to open the world up for him at his pace and in his own time. Oh - great blog, by the way!

  5. ive also wondered about this jean, i think we all have, its a question that might never be answered but aleays taught about. i really dont know, i try not to change Luca too much as he is who he is, im very fortunate to be able to bring him shopping, restaurants etc with very little hassle, but if he faster than us, we've had it lol

    if i ever do think of an answer il let you know, great blog and one thats leaves you wondering xx

  6. This has crossed my mind, although at 2 my little fella would get away with a lot more than an older child (for now) so I don't feel embarassed by him at all. But if I love him so much just as he is, why am I trying to change him? I read your blog and had a good think about it. I have to teach all my children how to operate in society and follow the implied rules, be they NT or ASD. So my ASD fella needs more help with it, but for me its no different to teaching my other two children about social issues/rules/boundaries etc. Great post, really made me think out something that has been floating around my head for a while now and I have been avoiding:) Thank you xxx

  7. Wonderful thought provoking post Jeanie, I suspect we all hit this dilemma at one point or another, as Jen said even with Nt children they have to be taught social skills and appropriate behaviour and its no different with our asd children although it takes much longer and some may never get it fully, I am not embarrassed by Kyle's behaviour although I am lucky enough that usually its fairly mild so not as obvious to people outside our world. Having said that the outside world is daunting for them and we let them live in their own world at home where they are safe and happy.

  8. I guess you could say that my son and I both have come a long way because he used to be non-verbal, self-injurous and didn't socialize with anyone. Fast forward 5 years to age 8 and he now has friends in a mainstream classroom, talks up a storm, and no longer hurts himself.

    I went through a period where I wondered about expecting him to "conform" to the outside world but since it is just the two of us and I won't be around for him forever, I think that it is good that he knows more about the world around him.

    Sounds like you are doing a great job! I let Griffin live in his world at home's a lot of computer and DVDs but he is happy and safe, as you say. After all, safe & happy is most important....right?

  9. Thank you so much everyone for your thoughts. I feel a bit better about it now, and I suppose it's normal to questions our motives.
    Funny enough, Jen and Andra hit on a point that occured to me later today, in that I also teach my NT kids how to behave appropriately (with mixed results!!).
    Of course I adore Bob as he is, but I also need to facilitate his journey to getting to where he can be all he is capable of.
    Thanks again for bouncing this around with me.
    Hey, isn't is great to have Hammie back in the saddle?? Welcome hone doll! XXX

  10. Great topic jean. I think all of us ponder over this and I agree with you. AJ can flap and script as much as he wants, wherever he wants, and screw anyone else bothered by it. Il only "force" him to do the skills necesary for an independant future.
    I allow and encourage him to take part in the rest but if he chooses not to thats up to him.
    My number one priority is his hapiness and id only feel selfish if i forced him into activities I think hed enjoy and he hated them.

  11. Sometimes i have this conversation with my husband and i notice that he thinks its best to let our boy be comfortable at home and do his own thing i.e take his clothes off, stim by running up and down scripting in front of the tv when the others are watching. i agree to a point, he needs to be hapy in his home, and life in his asd unit is intense he does need to let off steam but i find the more i let him be free to do his thing the harder it is to get him to do simple tasks again. It depends i think on the level of understanding of the child. My little fella would take his kit off anywhere 18 months ago but now he knows he can only do that at home so now i feel its o.k for him to do it, but as for being rude or leaving parties or places he isn't happy with i wont correct that behaviour as people have to realise that he isnt being rude but just cant tolerate the situation. your not looking for an upgrade just trying to help him reach his potentential your a great mum xx

  12. Well said Jean you have hit the nail on the head there.My biggest hope is that i can give Jim the skills to live his life where he can make an informed decision on wether to " opt" out or not,if you get what I mean

  13. Very interesting post Jean. I think it would be great in theory if our kids could be who they are. But my ds anyway is not happy the way he is. He was actually delighted to get a label as it explained to him why he finds so many facets of daily life so difficult. He is always asking why he finds it so hard to be 'good'. And I can't believe that it is in his interests to be violent towards those he loves, to upset and annoy his friends so that they avoid him. I just think you are amazing for working so hard with your son to make life better for him.

  14. Such a good point. We can drive ourselves crazy with these thoughts. I am reading a great book, written by a man with Aspergers. And he says that he loved that his parents were patient and didn't force anything "normal" on him. But then he also talks about how he at one point decided he did want to have friends and he had a lot of trouble. He had no idea what to do and didn't really confide in anyone to help him. Every once in a while his mom forced him to be social in a situation he didn't like and it made him very nervous and upset.

    I have this question about the whole OCD/routine/stimming thing. I wrote a post on it when my son started his new school. At his old school they didn't seem to mind or force him to let go over his little rituals, but his new teacher is all about him leaving those behind. As is my husband. And I am torn. Him doing his routines may make every single things he does take longer and he may be looked at strangely, but the alternative, him throwing a huge tantrum or not getting to get his own coat off the hook makes me sad. I think that may hurt him more.

    All we can do is what we think is right. It is so hard, isn't it?????