I'm back - About My Son Johnny

[vzandt]

Valya I don't think Helen ment it like that. I think she ment what Casey said. A purpose. A reason to get up in the morning.
Helen my husband doesn't talk to me for days sometimes. Its not because hes being a brat. Its because he has nothing to say. I'm from a family of ten so I kind of like his quietness. Maybe her son is just introspective himself.

When my boys were young and they were hurting (broken hearts.broken fingers..broken feelings) I would tell them get a hobby. Do a puzzle ..read a book..paint a picture..DO SOMETHING...keep your mind busy.

 

[HelenL]

I'm sorry you took my comments the wrong way, I'm having trouble typing these days, so I'm trying to be more concise. Maybe because I have a (Teen) son who has a different set of challenges, I don't want to cut him any slack... I try to treat him the same way as the others. If my son refused to talk to me for 2 days, that's wrong and I'd call him on it. IMHO that's not ALS, that's being temperamental.

As far as my comments about his mind atrophying, that's how I feel about myself! If I don't keep working and DOING, I don't know what I'd do. I didn't mean to be insensitive here, but I thought you realized that you asked for help from people who are all dealing with varying stages of this disease, and don't want pity parties (at least 90% of the time). You said he refused to go out, you said he was holing himself up in his room... whether he used to go to college or not, he obviously needs to get out of where he is mentally right now. Online courses was just a suggestion. We all want to escape from this if we could, but living your life is better than waiting to die.

Again, I'm suggesting a tough love approach, and my apologies if I offended you... that was not my intent.

 

[HelenL]

Sigh... just got moderated... sorry if I upset you.

 

[Valya]

@vzandt - Thanks for responding. He does keep busy but he definately needs more to occupy himself, keep his mind busy, as you said. We're working on that aspect.

@ Helen - I apologize if I took your comments the wrong way. As has been said I'm sure a million times, there is no inflection in text. And I don't know you or your circumstances, so had no idea where your perspective was coming from.

To clarify-his not talking to us when we placed round door knobs for levers wasn't his being temperamental or a brat. He is one of the most calm, level headed, even tempered person ever. It was almost a pleasure to have him so annoyed, because he so rarely shows his emotions. I only used that as an example to illustrate that he really doesn't want any concession to make it easier on him due to ALS.

I never said he holes up in his room, he's rarely in his room, but out with the family on his computer. He and his brother spend a lot of time together also. He's a photoshop expert and has many on-going projects. He interacts with the family all day, if we are home.

Agreed he needs to get out of where he is now, but my idea of tough love is apparently different than yours. Reinforcing to him that 'Ya ALS sucks, you got a bad card but (borrowing your line which I really like ) living your life is better than wanting to die' and making suggestions is a different approach than using insulting terms about him personally in the discussion. But I get where you're coming from and it's ok for us to disagree on that. And, btw, because we don't agree on some of the aspects, doesn't mean I want a pity party.....

Thanks for your clarifying your perspective. I appreciate your opinions.

 

[Valya]

@ Rachelq - You must be reading my mind! We are working on that. Johnny is very into technology. We bought an iPad just for that purpose, due to his worsening speech.

His cousin definitely gets away with more than we can. And I'm actually meeting her and her mom for lunch, so I have to run but will post more later. Thanks