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Tangled Apron Strings
July 30, 2000
7:29 am
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witsend
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My son is 22 years old. Twelve years ago he was diagnosed with epilepsy and subsequently, through medical/pshycological evaluations, with related memory and coordination problems. Prior to the seizures, he was an A student, with the normal confidence of a ten-year old. After the seizures started, it was if he had to start all over again. Good grades became hard to achieve, social skills became nearly non-existent. It was all he could do to graduate from high school. His attitude has always been on the surface very positive, but I've always wondered if it's just a cover up because that's what he thinks I want to see. I've been his only parent for the majority of his life. His father was abusive towards me; we divorced shortly before my son's seizures started. His father couldn't handle our son's condition and has not been a factor in his life for a very long time. I know over the years I have been over-protective because my son has been "different", but I have also tried very hard to encourage his independence and individuality. I am a very independent person, use commen sense as a basis for decisions I make for myself, expect honesty and confidence from myself. I've tried to instill the idea of socially accepted concepts into my son. I remarried and have a daughter. Even with the age difference, my children get along well. The second marriage ended in divorce for many reasons; I believe one of the reasons is that my second husband could not deal with my son's situation. After high school, my son spent a year away at college. His low grades didn't allow him to continue after that first year. He moved home and began classes at a local tech school; he recently completed an accounting program there. He's looking for a job, has been called to try two, but has not been retained because he becomes disoriented, nervous when asked to perform fast-paced, multi-tasked, need-to-be-right-the-first-time duties. I'm at my wit's end from trying to help my son become independent. I believe he can do it, but he seems to frantically retie the apron strings each and every time I try to untie them. For years, he hesitates to speak or do something, even daily routine, simple things, if I'm in the room. When he does say or do something, he looks at me for some kind of approval. Because of the seizures, he doesn't drive - he tried to, but because of his photosensitivity made the decision not to endanger others or himself by getting behind the wheel. He lives here at home. While he was in school, he had friends that he socialized with at school, but otherwise he stays at the house, for the most part in his room. When he wants/needs to go somewhere, he either takes a cab or I give him a ride. I know I'm guilty of making excuses for him to other people, trying to cover for him when he acts strange. The older my daughter gets, the more I see that she sees that her brother is a little different. It makes things even more tense when this little girl exhibits more commen sense and initiative than her grown brother. I feel horrible thinking, let alone saying out loud, negative things about my son. Have I screwed up so royally at being a parent that he's ruined for ever? I'm worried sick that he'll never have a life of his own, yet continue to encourage him and tell him that I believe he can have his own accomplishments. I panic at the thought of what would happen to him if I died all of a sudden. We live hundreds of miles away from my family; his father and that side of the family has little or no contact with my son. I'm not sure who needs counseling more, me or my son. I love my son dearly, but each day I get more despondent about the situation.

July 30, 2000
10:06 pm
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Frieda
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I think counseling would be a world of good for you. You have come a long way, it sounds like, don't throw in the towel now! You need some support for you. Go for it!

July 30, 2000
10:56 pm
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Lostsoul
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I applaud your ability to love and take care of your son whom you call Different.It takes an incredibly strong person to deal with your situation.You are amazing and dont let anyone tell you otherwise.

July 31, 2000
7:06 am
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hazza
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Hi There witsend,
I do feel for you in your situation. The thing that is causing you most ditress, as is nearly always the case, is fear.
The fear that your son is not independent enough.

I too went through this stage recently of re-tying the apron strings to my family! From being a highly independent child and teenager, I developed anxiety disorder and agoraphbia and found that in my twenties I suddenly had to rely on my family for more support than ever before. So I know the issues you are talking of as I have seen all those different perspectives within my own family.

All i can tell you is what I have learned about me, maybe some of it will ring true to you, maybe some of it is nothing like what youa re facing - only you will know that!

Firstly. like myself, I think your son has because of his illness, been left with very little confidence. With me, my disability was never knowing when the next panic attack would strike, until My world closed in around me trying to keep myself safe from it. With your son, he never knows when his condition will strike him - this means that he always has that nagging doubt at the back of his mind - what if this happens, what if that happens, what if he hurts someone by accident. Scary stuff, because all these things CAN happen, it is safer by far not to take the risk and so in the end you just stop doing things bit by bit.

This anxiety pervades everything, the lack in confidence can trandspire over into other things. So gradually we lack confidence in our own worth also, lack the conviction to speak our own opinions, after all our bodies have let us down so much, we do not trust any of it anymore - even our minds sometimes!

The key to recovery from these situations is that the person themselves must take the steps - You can not initiate his progress, if you try to force him to take steps he is not ready for, you run the risk of him taking on too much too soon, then if he fails, it reinforces the fear and lack of confidence so that next time, that thing seems even more scary to do.

The best thing you can do right now is to be a good support person, just like you are doing, but always allow him the chance to make his own progress.

Only when HE decides that hewants to try new things will he be able to, so maybe you could talk to him about his anxiety levels?
maybe talk to him about how he feels about his condition and find out what he FEARS. fears is the key, I think.
Ask him what he is afraid of and you will find some of the key issues that need working on.

For example, if he fears having a fit outside, you can talk it over with him, youtell him the LOGIC about the situation, and what he could do IF it happened, and slowly get him to VISUALISE being able to do small things, DESPITE the possibility of it.
Baby steps increase confidence.

whatever he fears, you talk to him about the REALITY of the situation, find out if there is anything practical that you can do that would make him feel better when he tried new things. But only as support, and always working out a graded, gentle program of steps towards more independence. But do not say independence - that raises fears of ABANDONMENT, it is steps towards recovery from anxiety.

Find out what he wishes he could do, if it were not for his condition.
Maybe he longs to hold down a job, or complete his studies, but doesn't know how? Finding out something he REALLY wants can be a great thing to work towards and that in itself will bring about confidence which all help in the longrun.

The problem could be that the more you try to make him independent the more he fears it, if he senses that he is being allowed to go at his own pace then, that takes some of the pressure off and things become more possible in his mind.
Again, this is just my opinions based on MY experiences.
Once I sat my family down and tld them that I wanted to recover but I needed their help, things were a lot easier for me, they had no idea of the anxieties inside me, but just being given that time to re-tie the strings and work on getting me healthy has produced more progress for me in the last year than I had made in the previous 7 years.

I guess it is a bit like baby birds! The parents do notpush baby birds out of the nest, they encourage them out, holding a nice juicy worm just out of reach until they have the courage to fly!

Find out what your son sees as his big juicy worm in life, what he really wants to do but feels he can't and together you can work out ways of him taking baby steps to get there.

I found that impatience had been my biggest drawback, trying to solve it all at once, but just like the story of the tortoise and the hare, baby steps get you there quicker.

Good luck with all of your family, your son is very lucky to have a mother who cares so much for him.
Peace
Hazza

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