So tired of watching my boys suffer!

[tantrums]

I just yelled at my DH this weekend that I'm fed up with being the referee! That would be the referee between him, a 45 year old man, and our 7 year old! I feel like I'm always trying to keep the peace so I don't have to deal with the fallout! My DH says he gets it - he will say DS has PANDAS and has even suggested to a few others he knows they get their kids checked. But then, he will say when anyone asks "oh he's doing MUCH better!" REALLY? What kid are YOU living with??? Did you NOT see him throw the tv remote at my face last night or have the 2 hour screaming fit or punch me in the back? Do you not hear him say he wants to kill himself with a knife and not live anymore? Oh probably not because you were busy yelling at HIM at the time that he'd better calm down or your taking away his DS, sending him to his room, grounding him, etc... All while mommy is in the kitchen popping an ativan bc rule number one is we do NOT contradict each other in front of the child. May have to reassess that rule!

 

We are FINALLY all set up for in home wrap around services. My DH gave me all of the info for the medicaid application, helped me fill it out, asks when the next psych appt is, etc... Then when I tell him we FINALLY have it set up - he doesn't want someone in the house working with us because we are FINE! As if I never told him about it and suddenly introduced him to the workers when they arrived. I should also mention, our coordinator is one of my best friends, who he knows very well!

 

He would sure as heck never throw ME out - he'd never be able to handle any of it without me. But I tell ya - I fantasize about packing up his shite and throwing it out. Sometimes it feels like my life would be a lot easier if I didn't have to deal with his feelings as well. He means well, he's not a bad dad. I'm just so drained from dealing with DS that I don't have time/energy to consider anyone elses feelings and I don't want to hear what I "should have done" in the situation.

[Dedee]

I'm right there with ya girl. What I want to know is why do I have to be the one in control all the time? I have to be the one making doctor's appointments, explaining things to the kids, dealing with insurance, dealing with tantrums, rages, and fits. All the while my husband can act like an idiot when things get to hard. He knows what this is, but still says stupid things to our daughter while she is in a rage that only make things worse. He storms around the house mad and I'm wondering who the ###### are you mad at? Again, I am upset too, but I have to stay calm and deal with the situation. Many times I want to tell him to just get out and leave. I can only deal with one tantrum at a time. He is an adult right? So grow up already! Ok, I feel better now......Thanks.

 

Dedee

[dcmom]

I have to say, Im with y'all on this one.

 

My dh is really good, when they are REALLY bad- like hiding under the desk, not eating and speaking, non functional bad.

 

BUT, once they make progress- he is a disaster, cranky, yells, takes everything they say personally, says I am too easy on them, etc. It has taken a major toll on his relationship with the girls (they remember everything he says and does, and don't necessarily remember the pandas- y things they do), and a toll on our marraige.

 

I often wish after a day of being a mom, cook, housecleaner, errand gal, psychologist, OCD coach, mean mom that forces school, medical researcher, doctor appt maker, homework helper, school liason, referee, etc that I might get a tiny bit of help when dh gets home.....

 

It is nice to know I not alone.....

 

I do find it helps to see the psychologist with dh, for the kids, to discuss dealing w/ the kids and getting us on the same page....

[airial95]

I think that we all can relate to the marital strife this puts on a couple. It's tough. My husband and I struggled at first because I felt like he didn't care. I mean, how come he wasn't out there looking up everything he could about this condition? I couldn't even get him to read Saving Sammy - but don't worry, he can tell you exactly what the price of gold is at any given moment and what the Buffalo Bills were doing in their after off-season workout pre-meeting.

 

After a few months of marital bliss (note the sarcasm) we finally had a good old fashioned "talk" - which really was a giant screaming match. The ultimate result was that we realized we both have our strengths and weaknesses in this fight. I had no idea that he had been totally rearranging our financial lives, to make sure that if and when we needed IVIG or PEX we'd be able to swing it. He never told me, but the day I told him about those options and the potential price tag (and lack of possible insurance coverage) that was his first instinct. To him it was a no brainer and he just assumed that's what I expected him to do - otherwise why would I have told him about the cost? He couldn't tell you what exactly IVIG or PEX are, or how they'll help our son - but he can tell you his plan to pay for it!

 

On the other hand, he realized that he didn't have that same tenacious spirit I have, and that there would be nothing that he could find/read/discover that I haven't already found -so why not let me do what I do best (figure out this darn disease) and let him do what he does best (figure out how to pay for it).

 

When I realized that what I percieved was his lack of effort was really just a different approach to tackling the same problem - it opened up a world of communication. We realized that the reason I covered almost all of the Dr's appointments and school meetings etc... was because I'm totally neurotic and am not satisfied unless I know every word that was uttered (including tone and body language). It was more of a stress on me to NOT go, and more of a stress on him to explain to me what happened if I didn't go. But he goes to all of the important appointments (first meetings with any new doctor, IEP meetings, and any appointments considering a massive change in direction.) He even now takes therapy appointments every other week (which he complains about mightily but understands that it's needed and helping.)

 

It has taken some ongoing effort on both of our parts on the actual parenting front - how to deal with the meltdowns/catering to the OCD etc... In that respect - he's usually the softie and caves to the OCD more often. Then he wonders why our son has more meltdowns when he's with me (because I didn't think that letting him have 3 simultaneous glasses of milk going was really a good option?)

 

The point to all this is - we've all been there, and for us, ultimately it took a real ugly, knock down, drag em out fight to realize that we really were on the same team all along, just that one of us was running the offense while the other was running defense with no head coach coordinating the two!

[smartyjones]

. was because I'm totally neurotic and am not satisfied unless I know every word that was uttered (including tone and body language). It was more of a stress on me to NOT go, and more of a stress on him to explain to me what happened if I didn't go. the two!

 

 

hilarious airial - yes, i'm the same way!!

 

i remember after i had my first son, i read somewhere that a child entering a relationship was like putting a magnifying glass to it -- everything is seen more -- the good is seen/gets better -- so does the bad.

 

i think a sick child is like putting it under a high-powered microscope!!

 

of course, i think the best solution is spending quality time together but that's not always a possiblity with $ and finding someone to watch the kids, especially in a flair up. one thing that seems to help us is each of us spending separate time with only one child. we fall into me being with both boys, then needing a break and him with both. sometimes, it seems to be more energizing to do something fun with only one child -- kind of for everyone, kids and us.

[tantrums]

You know, it's funny. I would NEVER be satisfied with DH taking DS to a doctors appt without me there so I am with you on that one. I do appreciate it when he (rarely) offers to go with me. Usually, I get "do I have to go" to which I answer "no YOU don't have to. I HAVE to" bc I get PO'd at the question. I will say this though, he went once when DS was about 1 and had cellulitis in his eyeball. We got to the doctor with a screaming infant with a 105 fever. Everyone was panicked, they gave him an ABX injection and DS screamed bloody murder. DH almost passed out and said he was never going to the doctor again with us.

 

He went once three years ago when DS had strep and I had literally JUST had back surgery. I insisted on going along but couldn't drive. They had to do a strep test and DH couldn't figure out how to hold down a 4 year old child to get it done. I started to do it and the doctor pulled me back and made me sit down. They had to call in three nurses! DH was white as a ghost that we had all just done that to his child. I tried to explain if he just did it right right away, it wouldn't have been a big scene.

 

Last month, he went with us for bloodwork bc he wanted me to go to the video game store afterwards (again WHO is the grown up??). They took TWELVE vials from my 45 pound child, who passed out, woke up and puked. Yep, guess he's never going to the doctor with us again. Must be nice to have the choice though.

[danddd]

wow thanks for posting this topic. i was always afraid to post about dh. again,I see that I AM NOT ALONE!

i will never understand the whole grown man vs. sick child. i see it too often, loathe it.

and not stepping in when the other parent is dealing with a situation? ahhhh, sometimes I have to step in, because it is going so wrong, and so mishandled.

i could go on and on, but i will just say thanks again guys!

[Stephanie2]

Just thought I would add that dh is still not talking to me. OK, so maybe I didn't exactly step in so tactfully, but COME ON! Can't he see I am stressed out? Do I have to handle ever situation so perfectly? Ugh! Exhausting...

 

Oh well, I guess if he's not talking to me at least that means we are not fighting at the moment. One less battle!

[Ozimum]

Oooh! Stephanie, that reminds me...in our darkest patch I was so angry with my DH I didn't/couldn't speak with him for two months! Very childish I know. (We're still together!)

[fuelforall]

Hm, no dads heard from here? I thought I'd wait a while but it looks like no dice.

 

FYI, I am the one who pushes PANDAS remedies, mainstream and alternative in my apartment. I go to the doctor's appointments (except the shrink) and I go to the labs.

 

If it were up to my wife, she would be throwing at the kids every drug psychiatrists tell her to throw.

Actually she did throw a few of them. Except for one drug for controlling tics, none of them worked.

 

I sounded the alarm when my second adopted child started showing symptoms. Now he's getting treatment for strep, et al. Because unless you push, pediatricians won't bother to check for anything.

 

Yes, husbands are needy but a lot of wives are too. Not all women are programmed to be the ones kids lean on. A lot of women are like men: grownup babies who have been pampered and can't take the heat when it shows up. Here's what they expected:

 

"But I thought babies sleep all day and then when they turn five, they start being such nice children and you only have to worry about them when they become surly teens...."

 

You know... those kind of parents.

 

Life throws you curve balls. You gotta deal. It would be nice if one weren't so suffused in negativity around my place. Don't know how much of that happens with you folks but it looks like it does.

 

Thanks for letting me vent a little. I know we all need it.

[amyjoy]

oh steph, i'm so sorry. talk about behavioral regression - sounds like your husband hit that wall himself.

 

who is really prepared for living with this level of stress, to have such good coping and communication and self care strategies to always stay on the high road?? its super human and pretty insane, really.

 

my husband was never willing to be on the team, it was somehow my fault and DS's fault. actually he was jealous of the attention i gave to DS, i was always in the middle of that one. that was more exhausting than the pandas, i think. so i finally had to leave that man.

 

isn't it so great that you have this forum, and we can talk about stuff like this?

 

sounds like you all could use some rest.

blessings to you

amy

[danddd]

nice addition to the topic fuelforall......lets adjust it from a mom/dad thing to a primary/non-primary pandas caregiver thing!

(does that make any sense? i am tired.)

[Stephanie2]

nice addition to the topic fuelforall......lets adjust it from a mom/dad thing to a primary/non-primary pandas caregiver thing!

(does that make any sense? i am tired.)

 

Yes, it makes sense. BUT, I still think there is something about a mom being "in tune" with her child. Also, I think that most moms possess this "mama bear" instinct that if someone (something) hurts her child she will growl and maybe even attack. I learned early on that I have this very strong mama bear instinct toward my children. Intense, and it's not something I decided to have, it's just there and I just pounce when those buttons are pushed.

 

I honestly don't think most men are programmed that way. I can't understand it, not having that protective instinct. And I don't blame them, they just don't have it. With all that said, my husband is a very attentive dad, more than most, but he doesn't come close to me when it comes to the well-being of my children.

 

Sometimes I wish I didn't feel this way toward my boys...it's exhausting when they have health issues b/c I am constantly on alert, so hard to relax and put it out of my mind. Sometimes I wish I was that mom that puts her kids on psych meds and when that doesn't work put them in an institution or let them fend for themselves in this life. Would be easier for me. But that's not what I'm made of. I think most of us on this board are the same way, that's why we are fighting our husbands, our doctors, our in-laws, our relatives and friends, the teachers...and a rare disorder that has no path laid out before us. (OK, I'm really getting going here). We are the strong ones, even though we feel week. Most moms would have thrown up their hands by now. Am I right?

 

Oh, and he's still not talking to me...

Edited February 9, 2011 by Stephanie2