So frustrated & sad already

[Cloth4Colin]

It's been less than a week since we received DS' diagnosis and I'm already frustrated and sad over the whole thing...maybe it's just finally hitting me, or maybe I'm really emotional/hormonal or something...but I want to take DS and hide. My family is driving me NUTS!

We are currently living with my parents, so it's DH, myself, my parents, and DS1 & DS2 all in one house. Everyone is CONSTANTLY "testing" DS to "see what he can do/can't do" - unfortunately it feels VERY much like I am watching them try and teach a dog a trick. It's hurting me greatly to see that this is all anyone wants to do with him. It's "Camden, look over here, turn your head." *rattle shake, rattle shake* non-stop. DH tries to get him to grip his hand, move his head, put weight on his legs. My mom is "coaching" him every time he's lying on his blanket in the floor. They take him out of his swing or bouncey seat to lie him down and "mess" with him (IMO.)

It's driving me bonkers. Yes, there are a few exercises we need to do with DS, but this is literally a constant thing around here since he was diagnosed. I feel like DS has become a lab rat in his own home - that his problems are defining him and no one is letting him just BE.

What can I do...this is exactly what I DIDN'T want to happen. :

[sbgrace]

[QUOTE=Cloth4Colin;7708142] Everyone is CONSTANTLY "testing" DS to "see what he can do/can't do" - unfortunately it feels VERY much like I am watching them try and teach a dog a trick. It's hurting me greatly to see that this is all anyone wants to do with him. It's "Camden, look over here, turn your head." *rattle shake, rattle shake* non-stop. QUOTE]

. That happens here too (different things, same result...constant testing by relatives). I can't imagine living it all the time.

It is overwhelming and for me the process of accepting things was a grief process. You experience so many emotions and sometimes reality comes in waves. Your son is very fortunate to have you as a mom.

[MotherWhimsey]

s We're with you. My mom is constantly doing "physical therapy" with him. And if she's not doing it, she's telling us how unacceptable what we are doing is for him, and how he needs extreme therapy fast "to fix him." If they're not doing that they're telling me that I'm crazy and he's totally normal. So it goes from severe brain damage, to totally normal and "advanced" back to brain damaged all in the course of an hour. Plus (and this one's so stupid I just want to scream) my mom tells us that she thinks tube feeding just isn't working and is making him miserable. If he's not tube fed, he will die. period. no question. So what is she saying, that it's better to let him be happy and die a slow and drowning death? I just wans to scream when she says that. She also wanted to know why they let us out without fixing the aspiration problem first and why we weren't doing "training" with him. I was like "uh, what training?" she said in a totally bitchy superior voice "suck training." right. that's what made the aspiration so much worse. he learned to suck properly. I asked her if she'd ever heard of epiglottis training, and she said, "I don't know, does it work?" I just was so frustrated by then I gave up. She just can't accept that he's not normal, and will go to any length to find a way to fix him. I'm happy the way he is as long as he's happy.
Sorry to vent on your thread, but it was a good topic that I bet most of us can go off on. I just think my son's happiness comes first. And I accept him for who and what he is, and it makes me sad that the way some of my family deals with him having problems isn't acceptance but trying to fix him.
maybe some day our families will come to accept our children for who they are. And maybe some long time veteran will have some good tips on how to gently tell them to deal with their issues another way that doesn't involve you or your kid. But I know just what you're going through, cause we're going through it too.

[Sahara]

Wow, it's hard enough to handle your personal emotions whenn you first receive a diagnosis. I can't imagine having to process your own feelings, meet your families needs, and deal with your parents all at the same time.
It does sound like they are acting out of love, dealing with his diagnosis in their own way. Maybe a family meeting with all of the adults would be a good idea, make a game plan, discuss your priorities. Give yourself time to think through how you would like your parents to be involved and outline that for them. If you do it in a way that makes them feel useful, not criticized, they could become invaluable to you. You could even give your mom responsibility for one physical therapy session/activity daily, at a set time, if you are comfortable with that.

We lived with my husbands parents for about 8 months, and my daughter became extremely ill. We ended up working together as a team to care for her and my older son, who is my special needs child, and although rocky at first it became a wonderful bonding experience for us once we figured things out.

[TinkerBelle]

Sounds like they are in a denial stage.

[Welcome2Holland]

We get this too and I simply can NOT get across to MIL that when she continuously says "See? There's nothing wrong with him!" (right in front of him, mind you), she is making it obvious that she DOES think something is wrong. Because after all, if she didn't think anything could be wrong, she wouldn't be bringing it up.

The one thing C really had going for him was his self-esteem and general happiness but being talked about continuously in front of his face, I feel, is killing that. Entirely. DH isn't on the same page with me on this. He believes it "can't hurt" for MIL to see C every single week. I managed to get it down to every other week and now am the bad guy.

So, yep. Can relate.