Update -Can't take one more minute-long

[tired Cheryl]

On the way down to difficult child's therapy session and neuropsychologist summary appointment, husband tells me that his family is ready to disown me over the other night when I took difficult child back over to them because I could not endure another night of meltdowns. They all believe that I should be able to handle it and that I acted inappropriately. husband said that he defended me the best that he could but that he agreed that our son is our responsibility and I should not have bothered his parents. I was just so at the end of my rope and didn't want to lose it completely. Guess I'll have to figure out another escape plan?

During therapy we discussed this topic and therapist says that I need to learn how to "ignore all of the bad behavior as long as it is not dangerous" (how about dangerous to my mental health?) and that I need to get therapy for myself because I am not able to cope and therefore will not be successful implementing their behavior strategies.

Discussed with her that yes, I agree that I need therapy but I have been too busy taking difficult child to his multiple appointments as well as my own recent medical health problems, starting a business, etc. She said that if I need to miss his therapy in order to get therapy for myself then that is what I should do.

I have repeatedly asked them to view the video of the VEEG in June that quite clearly shows two 8/10 on the meltdown scale, meltdowns so that they will know what I am trying to deal with. So, I begged for them again to obtain video (same facility different dept) and VIEW IT! She says that regardless of what it shows that I need to be the one in control when he is melting down. Wouldn't that be nice? In that case, Maybe I am the one who needs the medication?

I told her that there has not been one thing that they have asked me to do that I am not doing. She says that I am probably making the meltdowns worse. Just watch the video! then you would know what I am/am not doing!

So, now husband really thinks the problems is me. That is until I mention that his technique is spankings with the belt. They had a little discussion with him about this. I also remind them that difficult child was just kicked out of school and has bitten, scratched, yelled at, etc. every teacher he has had.

We moved on to the neuropsychologist folks who give us summary. difficult child is average in intelligence but they believe that his numbers are lower than expected because he would not cooperate. He started out willing, but soon tried to hit them for no reason, hang onto their bodies and then tried to bite and kick them. (They did not hint at that when I picked him up from evaluation)

They see subtle things, the details of which are not written in the summary, that are consistent with the proposed focus to his epilepsy being frontal lobe.

The believe that he shows many signs of ADHD as well as Sensory Integration Disorder (SID), in addition to his ODD. Recommend stimulant type medications but will need to be cleared through neuro (and me!) first.
They are putting in writing that he needs to be in PPCD program through SD and agree that he will not suceed in a regular classroom (if I can find another that will take him.)

Next stop was neuro office (she was out sick) so talked to Social Worker about getting him OHI, she says that the form needs to come fromt the SD. She tells me what neuropsychologist and advocate that I spoke to last night said, our SD is very hard to deal with. Do I need to force them to give it to me? We will find out. difficult child has appointment with neuro next week to discuss all medications and eye pain that resolved with increas of Trileptal.

SD supervisor phoned but I missed the call! DARN! Will hear what she has to say tomorrow.

The morning explosions are fewer and do not last as long. Perhaps Risperal given at night is working? Maybe we need to go to twice a day? I'll give it some more time.

I am trying to find non- mother in law/father in law babysitters for this week's days that I would usually use them. Since leaving there really sets difficult child off I am trying to avoid that. Not too many folks want to or are capable of baby-sitting though.

Thanks for listening,
Cheryl

 

[Wiped Out]

Unbelievable that they won't at least watch the video-I just don't understand. I'm sorry husband isn't being more supportive. I'm glad the morning explosions are fewer.

 

[Josie]

Can you change therapists? I would not take difficult child to one who blamed me for the problem. Especially if I tried to show them what exactly was happening and they wouldn't look.

difficult child's therapist saw both difficult child and me separately. She probably helped me more than she helped difficult child. When difficult child got stable, I could see that she had learned from therapy but in the middle of it, it didn't look like it was working for her. This therapist had raised her own difficult child's so she understood.

ETA: Your own therapy and/or medications might help you cope. When I was taking Lexpro, it did slow down my response time (in a good way) when dealing with difficult child.

 

[mrscatinthehat]

Oh please. I am so tired of the world blaming us parents. Especially when they won't even look at all info at hand. You have my sincerest sympathies about this. Family can be trying at the best of times. I know my own therapy is a good thing (though I have avoided it recently). Take some breaths. I know that about once every third or fourth month I make husband do the difficult child appoinments alone. Take some time for you.

Good Luck

Beth

 

[Big Bad Kitty]

(((hugs)))

No, you are not the problem.

However, there is a valid point in that the more in control that YOU are, the better equipped you will be to handle the meltdowns.

That does not make the meltdowns your problem. That makes your handling of the meltdowns less than perfect.

I know where you are though. You are going 100 directions at once, trying to deal with difficult child. Who has time for themselves with a schedule like that?

Sweetie, you need to make time. Perhaps you do need medication. Perhaps therapy. Definitely you need some "me" time.

Your in-laws are not very nice. You hubby needs to afford you some time to yourself. I hope that you guys can arrange that.

 

[flutterbee]

Well, my goodness, if you can't count on family who can you count on?

As far as you making the meltdowns worse, our kiddos don't need any help in that regard. There are strategies you can use to help YOU get through his meltdown in one piece mentally, but speaking from personal experience I've tried every technique thrown at me and when difficult child is in meltdown mode there is just not much to be done. She is not rational when she is in that mode and you can't be rational with an irrational person. The trick is to try to identify triggers so meltdowns can be avoided in the first place. I used the word "trick" because identifying those triggers can be very difficult and sometimes impossible.

 

[branbran]

You poor thing, you sound completely exhausted and at your wits end. What a shame that you cannot count on your child's "GRANDPARENTS". So much for family support huh? As for the ignorant therapist, please, it's so easy for them to tell us what to do and how to do it, and when their stratedgies don't work they blame us. I would like to see some of these so called "professionals" take our children home for just one day and truly see what it's like dealing with them. My daughter's therapist used to tell me to set limits and stick to them, I'm the parent and I need to maintain control. Why didn't I think of that????? It's quite difficult setting limits and gaining control of an uncontrollable child who's will is much stronger than my ability to keep sane!!! I want advise from a therapist who actually has a difficult child and knows firsthand what living with a mentally ill child is like, how hard the day to day life is, how hard it is to get them to do normal things like brush their teeth or do their homework. You know the saying, "Walk a mile in my shoes....." Sounds like you need a new therapist.

You are a great mom, a mom who does more for her child in one week than most moms do for their's in an entire year!!!!! We do the best we can and that is all we can do. People who do not have difficult children, even the professionals, can never know how hard it is raising a child with mental illness, nor can they ever know how heartbreaking it is.

Stay strong and keep on fighting. My prayer's are with you. :smile:

 

[ma2sevn]

Oh my gosh Cheryl, I so remember being at a place of such utter FRUSTRATION!!! And I seemed to get tunnel vision and spiral into a dark place...I was so focused on my difficult child and her behavior, but she was in jr high and so she was at school, and you would think I had a break. But I was on the phone to every resource I could find to get relief in dealing with her. SHe has reactive attachment disorder (Reactive Attachment Disorder (RAD)) and dosent have a fuly formed conscience plus was crazy rebelling due to her whole life story and we had the nerve to adopt her and try to give her a wonderful life ( we were so delusional)anyway, one day I made some comment to a mentor and it got miscommunicated to her supervisor who called me and fussed at me about it. I was so fragile I took that so hard. I already felt attacked by my child then I was being attacked by outside help!!!! They all kept saying I could do things differently and that some of it was her age and blah blah blah. When the bus would come home...or I would start thinking about the bus coming I felt like some one poured acid down into my stomach...I got physically ill. Finially I got on Paxil and my life really changed so much for the better. It has been an answer to prayer for me. Now, a few years and several difficult child's later, I can see that some of it was how I reacted to her and I guess I could have done it differently. But when you are in up to your ears, man it feels like you are fighting for your life. AND, I hated that I didnt get to do all the mommy stuff I wanted to do. I felt like I wasnt teaching her or anything constructive. I felt like I adopted a kid but didnt get one. We have all these ideas about being a parent and when you dont even get to feel like you are somewhat successful, PLUS the fact that you dont get to enjoy your child...added to the exhaustion of taking care of a difficult child....then to have outsiders..in your case FAMILY..add to your crisis...well honey hang in there. I dont know how you are going to do it but you have to have a break. Let husband take difficult child to his family and leave you home for a few hrs. Let them all "visit" so all three of them can take care of difficult child wihout you in the picture and see if things go perectly smooth for them. In my area we have a regional center that my difficult child's are serviced through, and they provide respite money and we find a professional respite provider so we get reimbursed. I found a lady who really is equipped to handle my difficult child (this one is 8 and sometimes beats up teachers too, and we have to restrain at home at times)And maybe I am calloused but when I leave him with her I block him out of my mind for at least an hour or so and imagine myself distanced from him. I love him better if I am well, and well for me means I have to have those breaks. I just wanted you to know I feel for you and I wish I could help you somehow. Angela

 

[hopefloats]

Wow! That is so wrong. The family and therapist sound like they need to spend a week 24/7 with your son and you go on vacation. I wish we could, right? A little trick with my husband that I do is to put him in the same position for a day with the kids. I think every now and then they need a reminder of how it is to spend a few hours with them verses dealing with them for the whole day by their self. I tell him that I need some me time, leave the house, and after a few hours he's calling me wanting me to come home. I'm sorry you can't count on family. Their supposed to be there when your at your wits end. I don't care what the problem is, everyone needs some time to chill! Sounds like they really don't know how to handle the child either and is putting full responsibility on you. I'm sorry. Your husband needs to step up to. Make him keep the kids on his day off and go shopping. Even if I don't have any money I'll go just to look. After a while he will realize just how hard it is for you and will stop with the you need to be superwoman deal.
Honey, if anything just find 20 minutes to shut the bathroom door, take a nice hot bath and you'll be much calmer to deal with everyone.

 

[TerryJ2]

Cheryl, I am so sorry for what you are going through. We've all been there!
I agree with-ma2sevn that sometimes medications can help ... they can slow your response time and smooth the brittle edges. I also agree that your husband, despite his depression, has to step up to the bat more and give you a couple of days to yourself, or even half days.
The therapist who suggested swapping out difficult child's therapy time for yours had a point ... that you need to put yourself first sometimes, especially if your schedule is that tight. You don't say whether you're working out side the home so I donl't know your daily schedule, but FYI, a lot of therapists work at 6:30 at night, so husband could do dinner with-difficult child and you could have a whole hr to yourself. Just a thought. (Our therapist even recommends good restaurants.) :smile:
So sorry about the grandparents. Obviously, that's no longer a viable alternative.

 

[Marguerite]

Cheryl, hang in there. And don't take it all so personally - your son is not like this merely to get at you. When the psychiatrist says you might be making his meltdowns worse, this isn't necessarily an issue of blame. I don't think blame comes into it, in this situation. I mean, it's not as if you are TRYING to make him worse? But sometimes we do, simply because the way we parent our kids, although it would be just right for most kids, is wrong for OUR kid. And it's not exactly written on their foreheads in letters of fire, so we stumble along, trying to work it out. I do accept that husband & I were making difficult child 3 worse, in the way we handled him. He is our fourth child, of course we were sure we knew what to do by number four - but not so. We've found better ways now, and when I look back to how we handled difficult child 1, I cringe inside because we got it so wrong. But how could we know? We thought we were doing it right. This is NOT about blame, it's about finding something that works. And a BIG part of what you need as a family, is for you to get your stress under control. I know it's easier said than done, but if you're less stressed, you'll be better equipped to sort out how to handle difficult child more effectively. Frankly, I'd be taking myself to a weekend retreat somewhere and leaving difficult child with husband to sort him out. I wonder if the grandparents would help out then? (I'm very naughty sometimes)

I think it's unfortunate this seemed like blame, to both you and husband. HE needs to realise that it's not helpful to simply sit back and criticise you, without rolling up his shirtsleeves and giving you a hand. As for the grandparents - it sounds like he's beyond them being able to help, too. Don't be angry with them - they're much more likely to be set in their ways and hence more likely to NOT be able to help a kid who needs a different touch.

I remember when my in-laws offered to take the kids for me and husband, so we could have a weekend to ourselves in the city, to celebrate our wedding anniversary. I can't even remember which number it was - 17, I think. We were in constant touch over the phone, they had the phone number of our motel also. But although things went moderately well for them, they did tell us on our return that they wouldn't be able to do that for us ever again - they were just too tired. And this was before we had difficult child 3.
We were disappointed with the news that they would no longer mind the kids, but not surprised.

My sister's son is not speaking to her these days because she refuses to take all his kids at once. He has 7 kids. My nephew and his wife wanted grandma to take all the kids so they could have a holiday for a week. My sister flatly refused - she's in her mid-sixties and lives in a tiny cottage with just enough room for her and one spare room. She said she could at a stretch take two kids for a week, and then swap and take another two, but can't manage more than two. Her son is angry that she "can't put herself out for her grandchildren" and insists that to take only some of the kids is going to be very discriminatory for the others, even if she DOES give them all equal grandma time over several holiday sessions. Mind you, she would have to take time off work to take the kids, too. So she would be giving up her holidays to mind her grandchildren but she is happy to do that, so she can see them. But all or nothing - can't be done. So he refuses to talk to her or visit, won't let her see the kids either. Very unhealthy.

I hope you can get some answers for you all soon, as a family. This about a lot more than just difficult child.

Marg