Dream

[Malika]

I had a very vivid dream last night that my son had Down's Syndrome and I had never in fact noticed... At one point in the dream his face, as a baby, transformed into that of a Down's Syndrome baby and I thought "Oh, goodness, I never realised". The way I understood this, on waking up, was that the difficulties he has could be just as innate and in a sense incurable as Down's Syndrome but I just can't see them and because of that I (and everyone else) am often unable to modify my behaviour to accommodate them.
This struck me as interesting and so I thought I'd share it...

 

[enzo]

My son, now 16, was also high energy, oppositional, but also affectionate and sweet, since day 1, and still is..I do think some of our difficult child's are "wired" the way they are from birth, and you may be recognizing this with your son. It took us many years to figure him out..What we've realized is that he feels emotions very intensely. Sadness comes out as anger, and happiness is pure love. Been a long time since I've had a 5 year old, but you may want to see if you can get someone to start working with him on skills for "staying calm" when starting to get wound up. Maybe thats cognitive behavior modification?

 

[Ktllc]

I always knew V was different, from day 1. He did not develop like his brother or any other child I knew or had seen. Aside from the obvious (crying spells, refusing to be held, arching his back, reacting to any texture, sound, etc..) the most striking: the way he was looking at people. A very intense stare that made everyone look away.
But yet, nobody saw him as different. No sympathy from no one... No book to pick up and read since nobody believed he was different, professional were no help. Just a bunch of useless advice and comments.
The problem of invisible disabilities: they are INVISIBLE.
It is hard not to get caught in that scenario in which you want to show/convince everyone that your child is different and needs help.
But, maybe, invisibilty can also be a blessing: V gets a lot of normal moments because he looks so typical. Simple interactions with a waitress or a walker in the park are very valuable: no judgements, V is a typical 4 year old asking nosy questions! The words are hard to come out, but the stranger does not know about language delay, Auditory Processing Disorders (APD) or anything else. V is normal!

 

[Malika]

Yes, I know what you mean, Ktllc. On the other hand, as far as J is concerned, he is never really unobtrusively "normal" - in all his interactions, it is obvious that he is more lively, spirited, full of "peps" than the average youngster... That's fine, but I think the damage is in terms of his self-esteem because he is so constantly made to feel like he is "naughty". I am as guilty as anyone, and obviously my impact on him is really influential, because I do frequently get annoyed with him when he doesn't listen, or is crazily stubborn, or starts whining endlessly for something (to me) unreasonable... a scenario that is probably familiar to many of you. Just this evening he started sobbing that everyone calls him naughty all the time and he really does see himself this way, despite my frequent attempts to tell him he is not naughty but lovely (which he is)... and then I get cross with him again. He really is very sensitive and all of this rejection is having its effect somewhere. Because the reasons for his "naughtiness" are invisible, and I think that's what the dream was about. Because we are all so wired to want social not anti-social behaviour, we react with annoyance and not understanding when a child does not fit into that mould. It's very hard for all concerned...

 

[InsaneCdn]

Malika... it's hard to do, but... it pays to adjust your language. Do NOT use labels with "you". HE is NOT "naughty" or "bad" or any of those other labels. Only use positive labels this way... kind, considerate, creative, whatever else...

The negative stuff has to become VERB not NOUN. Mommy gets cross when you DO things that make more work for me... (or make me worry, or whatever). It's the DOING that can be negative, but the BEING has to be positive.

If that makes sense.

 

[Malika]

Insane! I NEVER say, or have ever said, to J anything like "you are naughty", or "you are" anything bad. This would be total anathema to me, it truly would. Whereas I have often told him "you are lovely", "you are kind", etc.

But... he is a sensitive child and an intelligent one. Funnily enough, we had this very conversation tonight because I got really annoyed with him because he was going on and on about wanting a toy because we were going to buy a gift for a child whose party he is attending tomorrow. Which then eventually led to his explosion of pain about "always being naughty", which then led to me insisting that he was not naughty but lovely, etc. He then made the comment - which is the heart of the matter - that when I sound so cross with him, it makes him feel like he is naughty. Which it would, I can quite see that. Trouble is I can't manage all the time to modify my own human and natural responses...

 

[Ktllc]

Malika, after lots of analizing and observation, are you able to explain his behavior as it happens? Like right on the spot: J is doing x (which you find annoying) because of y (his lacking skill)? Simply saying "because he has issues" is not satisfying for me. But if V is persisting with the same question, now I ususally know he has not processed my answers (despite maybe answering 10 times already). I am slowly learning to pause, get his focus and answer slower, with different words and make him repeat. Now that I am able to analyze and adjust, it is easier to not be annoyed by V.
Obviously my example does not apply to J since his issues are different.
Is it still annoying: yes for sure, but at least I stay calm towards V.
As far as selfesteem being dammage: I understand and see it in V so much. It has gotten better since pulling him out of preschool though. A temporary fix, if you ask me... Rebuilding true self esteem despite the obstacle life will throw at him? I don't know...
I so wish you had access to better services... it would give you a better understanding of the underlying issues. Or does adhd really fit him?

 

[Malika]

Thanks for your response, Kttlc. Well, I guess it is a bit different. The problem isn't that I haven't understood J or he hasn't understood me. We understand each other perfectly: he wants something and I am saying no! He will not accept that no and will keep on and on trying to break me down, get me to agree. Which really pushes some button for me because I feel like I am being manipulated - which, unconsciously on his part, I am being. Even the tears and upset about everyone saying he is naughty was part of this unconscious manipulation campaign of his to get the toy he wanted. And I am ashamed to say that he did end up getting it, on the basis of a semi-compromise which is that we took all the money out of his piggy-bank to pay for it...

It's just the functioning that I read about so many times on this forum, the difficult child mindset of believing he must have what he wants and have it now, and for which I do not blame him morally because he is just a child but... it does really bug me. If anyone has any scintillating advice about this, or even any advice at all, gratefully received

by the way, how is the ma and pa visit going?

 

[buddy]

LOL, the person who knows the answer to that for a difficult child??? That is a pretty deep dream. My dream was that Q wiped snot all over my clean laundry, does it take a genius to figure that one out??? LOL.

 

[keista]

I had a very vivid dream last night that my son had Down's Syndrome and I had never in fact noticed... At one point in the dream his face, as a baby, transformed into that of a Down's Syndrome baby and I thought "Oh, goodness, I never realised". The way I understood this, on waking up, was that the difficulties he has could be just as innate and in a sense incurable as Down's Syndrome but I just can't see them and because of that I (and everyone else) am often unable to modify my behaviour to accommodate them.
This struck me as interesting and so I thought I'd share it...

I got a different feel from this dream. More that you know what is his issues are, but are not recognizing them despite yourself. In other words there's something obvious and screaming out at you but you haven't picked up on it yet.

 

[Malika]

That's very intriguing, Keista!! The only obvious thing that is screaming out is ADHD and sensory issues... but I thought I had (more or less) accepted that??

PS Nobody is giving me the magic key to deal with J's I-want tantrums? That is very frustrating

 

[InsaneCdn]

PS Nobody is giving me the magic key to deal with J's I-want tantrums? That is very frustrating

Malika... There is no magic key, or we'd have given you a copy long ago.
All we can do is peel back the layers of discovery one at a time, and modify our own approach one step at a time.
One step at a time... because if we change too much at once, two things happen... we don't know what worked and what didn't, and we end up upsetting the applecart majorly for a difficult child...

For my own difficult child? This behavior and whole sense of entitlement did not even begin to go away... until we got to the bottom of ALL of the layers of issues, challenges and problems, AND started getting real help for all of them.

 

[Malika]

I know, IC! Sigh....! Wish there were a magic key, though