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does anyone feel like their DC's personalities are gone... that they are unrecognisable?

(11 Posts)
hereidrawtheline Sun 19-Jul-09 10:35:48

DS is so angry. We can do no right. His screaming has reached new heights. He doesnt seem to love me as much as he did before. He looks at me in a hostile way. I cant make him relax or be happy. It feels like he is gone. He speaks constantly now, he really never stops. But I dont feel like he is the same person. I am scared I dont know what I have done to him to have driven him so far away. What has happened to him?

Goblinchild Sun 19-Jul-09 10:49:02

HIDTL, this is one of the very hard parts about dealing with a child on the spectrum whom you love. I don't remember the specifics about your son, he's not dx is he? So I'm just going to try and let you know that you are not on your own out there.
Don't be afraid, and don't feel that he hates you or is looking at you in a hostile manner. It's not you, it's more likely to be the world in general, or internal stresses showing through.
You need to stay calm and not try so hard to make him relax or be happy, give yourselves both some space. End of term is always a very tricky time, exhaustion, change, lack of routine at school.
If he's Aspie, then expecting him to love you in an NT-defined way is unlikely to happen. He is still the same person, just that at the moment he's lost the plot a little, and so you may need to pull back rather than trying to interact to 'fix' things.
One of the reasons he may be frightening you is that you are the person he loves and trusts the most. I know that sound very odd, but it means he doesn't have to try so hard for you, doesn't have to remember how to behave because he trusts you to be the same, however far into meltdown he has gone.
Breaks your heart though, he's not driven away, he's in orbit and will come back.

hereidrawtheline Sun 19-Jul-09 11:07:08

thank you for your post. it brought tears to my eyes. I think I am in a real mourning phase. I just feel I dont know where he is or how to reach him anymore.

No he isnt DX yet. I'm pretty sure its inevitable soon though & we go to BIBIC in several weeks as well. It is so hard not to blame myself for what is happening to him. I just struggle to understand ASD separate from behaviour. I dont know if that makes sense.

Am reading a lot about it to try to learn and understand and help.

I sometimes feel the urge to write about it, as that is what I do. But I have made it a rule never to write anything personal about DS that would portray him negatively or embarrass him at any point of his life, or make him feel worse about himself. And the only way I could write would be so honestly that it would be wrong to do, I mean published under my name. I just keep thinking about it. I guess because my heart is broken and that is what I do. It is strange feeling you have to keep quiet to protect him.

Goblinchild Sun 19-Jul-09 11:29:33

I know what you mean, I refer to my son as G when I post, but that's not his initial. I also change small details just in case anyone out there puts two and two together and comes up with us. You can write if that's a way you can make sense of things and cope with the stress, just keep a diary in a safe place that no one else can access.
The more you read, and talk to others in the same position, the better it gets as your understanding expands. You stop feeling as if you are lost and bewildered and alone and start to work out what you could do next. Not next year, or the rest of his life. Just the next step.
I said elsewhere that it's like being disappointed if your pet doesn't bark, wag its tail in joy or fetch sticks. But if you accept that you have a cat, you can appreciate what you've got in a different way.
Mourning is part of the process that a lot of people go through when they get a dx for their child. I didn't because it came as such an incredible relief when he was 9 to find out that there was a key.

hereidrawtheline Sun 19-Jul-09 11:48:34

your pet analogy is extremely good!

I think I thought in my pre-experience concept of ASD that the child's personality (to the level of an NT child) was never there. So while of course I still thought the parents of an ASD child would mourn and suffer incredibly, it is this aspect I wasnt expecting. I did not know that ASD could take away what was already there. That you would watch it go.

Goblinchild Sun 19-Jul-09 12:34:00

Not gone, just buried.
When the stress level decreases, when you get ideas and responses that work for you and him,put support into place and stick with it for a while, then his personality will surface again.
He truly hasn't changed, or lost anything that he had previously. He's the same person that he was before. Try not to despair or give up, even though it's very hard not to feel that things will never get better. Read more, talk more and learn how to undo the misconceptions that you've built up about behaviour and personality.
The negative behaviour of an ASD child is often a reaction to a situation or a stimulus that overloads them. Sometimes it is something as an NT that you can't pick up on, you just see the reaction. My son's sense of hearing and taste are way above normal, he's not as touch-sensitive as some, but textures and colours matter hugely to him.
You need to develop a sense of what is hard-wired into your son and can't change, and what you can alter if you work with him.
And as I said, talk to others in the same situation, in RL if you can as well as on the net. Support groups, NAS, whatever you can find that works for you.

morningsun Sun 19-Jul-09 17:52:37

HIDTL I haven't really got the experience most of the ladies on here have although my eldest ds had some asperger traits and sensory difficulties.

Just want to say,don't panic,he is still the same child and that communication will come back.

When you care a lot,it's hard to stay ever so slightly detached,but try to so you don't get overwhelmed.

In time,you'll get a clearer idea of what is happening,in the meantime try to be calm and strong in the face of his confusion~it will pass and you haven't lost himx

mysonben Sun 19-Jul-09 18:37:04

Don't despair and don't give up, i know it is easier said than done and you are having a hard time at the moment.
It will get better, we all have sticky patches when nothing seems to be going right. Your ds does love you , he hasn't gone away, he is just harder to reach at the moment and you have to carry on trying to understand him and remember he is still your lovely boy.

saintlydamemrsturnip Sun 19-Jul-09 18:51:57

How old us he? Remember a lot of challenging behaviours come from sensity difficulties. If he's very affected by touch, sounds, smells then having people near him- even those he loves will be difficult fir him. Doesn't mean he doesn't love you less - just that it's hard for him to show.

mumslife Sun 19-Jul-09 19:58:31

Message withdrawn at poster's request.

hereidrawtheline Mon 20-Jul-09 22:37:33

he had a great day today! the first good day in weeks. mainly because he was at a preschool fun day til 2, came home, slept til 5 then his very adored auntie & uncle came til 8:30 so everything was peachy. he is in bed but still awake, he's singing right now.

thank you for your support. I'm really nervous I have a new friend coming over tomorrow whose DD goes to preschool with DS and generally any type of playdate is a total disaster as he gets really hostile when I try to hold a conversation around him but not involving him and he usually wont play without me. But I really want to get to know my friend better. She seems lovely and knows he has SN so hopefully it wont be too bad. Last week we had the first "playdate" in about 7 months and he turned his back to my friend and said to me "mama I dont like her I do not want you to speak to her anymore. Tell them to go."

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