Is there ever a time?

timer lady

Queen of Hearts
With all the therapies & treatment plans floating around this family for the tweedles it's been pointed out to me recently how "negative" I am being.

I was scolded at a recent meeting for wm for failing to recognize his "stop & think" before asking something of me. Again, at a recent therapist appointment with kt I was scolded for seeming so negative.

I called kt's therapist today before our appointment tomorrow to discuss this issue.

I told him that while everyone seems to appreciate the grief & anger that kt & wm are feeling; the changes in their bodies due to puberty - the team as a whole are failing to recognize my grief, sadness over job loss & then the death of my mother. I also pointed out that my body is changing in a huge way - menopause. I asked very diplomatically for therapist to back off.

He suggested that maybe husband should bring kt in tomorrow. I called the man a wuss. therapist chuckled.

As parents of difficult children, we fight, advocate & research. We support our little wonders to hell & back. I feel we deserve some consideration in the therapeutic milieu. To understand that we are human beings.

I guess it's been a bad day emotionally - people, in general, need to stay away from me.

Thanks for letting me vent.


New Member
I think maybe I am where you are. It does seem like not a soul understands how frustrating and draining this can be. I don't know if anyone ever will, but then again, maybe I'm just being negative. I do understand how you feel. I hope it gets better soon. But you've had a whole lot on your plate emotionally in this last year, so go easy on yourself, okay?


Active Member
hang in there Linda. I know that sounds lame but one day things will get better. and...if they will be able to deal with them even better from all the life experiences you are going thru.


New Member
I wish I had some wise words to say, Linda. Just wanted to send you a big cyber hug to let you know I'm thinking about you.


Well-Known Member
It's important that you continue to be a strong advocate for having your family's needs met. This also means you have to advocate for your needs as well. You won't be able to help the kids if you become too far gone. Continue to stick up for yourself. Your team, while quite good, gets to go home at the end of the day while you live this constantly. I'm glad you said something to the therapist.

timer lady

Queen of Hearts
I'm really trying to balance my emotions (real teary eyed lately) with the needs/meetings/appointments of my family.

kt has respite at the end of the month - I personally cannot wait. I love my daughter - her complex needs are driving me goofy. It's never enough. More than anything I'm resenting the need to have in home help 7 days a week. I miss my privacy. (I know many of you are begging for help - I'm very grateful for the help we have. I just want privacy on a regular basis.)

I'm done whining - need to get back to the "real" world.

Thanks ladies - this too shall pass.


Active Member
Linda, it's totally understandable for you to feel the way you do. We all go through variations on this sometimes. The thing is, it DOES make it far harder to do the parenting job. It's harder on our kids, especially those who are struggling. It's harder on the therapists who may be excited at progress and we're not seeing it (often because we're too close - grandma notes that little Johnny is so much taller this visit, but Johnny's parents simply didn't notice his growth because they see him every day).

Even if they intended it as criticism, don't take it personally. Take it as an expressed concern for your welfare. Because your welfare impacts the kids.

I don't know these therapists, so I don't know if my next suggestion is appropriate - think about it from your point of view. Can you use the opportunity to ask the kids' therapists to help YOU get some sort of counselling or support? It's making several things clear -
1) you're hearing their concern and you share it, because you know you're not happy in yourself

2) your feeling like this is not your normal state, you want it fixed

3) you need help, support and understanding too - you're not a machine that keeps on going with no need of tinkering or maintenance.

I consider myself a fairly strong person emotionally. I avoid psychiatrists and counsellors, for me. I can handle my own moods and thoughts. I'LL be the one to fix me, if things aren't right.
But when the PTSD hit, I yelled for help. I had to do a lot of digging, shed a lot of embarrassing tears over the phone, put up with a lot of people hugging me when I just wanted to shove them away. And although I got some help, I still walked away once I had things sufficiently under control and used what resources I could to continue the healing.

Then ten years later, difficult child 3 was having a lot of problems at school. I was clashing with the teacher (while trying not to) and feeling like a failure. I hunted out a psychologist (not the bloke I'd previously seen) and saw this person for the period that I was having these difficulties. She helped me deal with my resentments, my grief and my self-esteem (which I hadn't realised, had taken a buffetting). Once I got my self-esteem back on track, everything else followed. And my relationship with difficult child 3's teacher improved, I had the confidence to be more insistent with him about difficult child 3's needs but still keep a cordial relationship. Once I had the confidence to take a stand once more, the damage being done to my self-esteem not only stopped, it reversed direction.

When you're vulnerable, you are more of a target for uncertainty. This makes it easier for people to dump blame on you, or at least throw it off them. or to even use blame at all - not appropriate as a rule. So being vulnerable makes the problems worse, which makes you more vulnerable. It's like a sheep with fly strike - treat it early, the blowflies don't get too bad, clean up the sheep and it will stay healthy. Don't treat it, the flies get worse, the sheep gets secondary infections, it loses condition. The more condition it loses, the sicker and more vulnerable to further infection and infestation it gets, until it dies; from something so preventable and treatable.

Be tough when you can. But when you recognise you're needing help, go out and get it. It's the best thing you can do for your kids, even if you don't feel you're worth doing it for yourself (and you are).

If you did a stress test on yourself - the sort where you give yourself a score for every stressful thing you've had during the last 18 months - I suspect you would go off scale (death in the family; change in living circumstances; living with disability in the family; someone in hospital; personal health issues; etc). And now it's catching up with you. Get some independent help, because when you go off scale is when you can't do it for yourself like usual.



Active Member
I do not know how I would deal with in home help 7 days a week. I like my privacy, and that would be hard. It is hard when everyone comments on difficult child, and no one seems to understand the parent's problems. hugs and positive vibes your way.


New Member
No real advice from me, either, I'm afraid - but I'm also sending a huge cyber hug.

I know what you mean, though, about feeling negative. Sometimes I am so run down that I go through the motions of a meeting - sitting there numb. I had a social studies teacher in high school who liked the quote "The more things change, the more they stay the same." I am usually more optimistic than that, but there are days . . . . . I too am glad that you said something to the therapist. They have no idea what it's like 24/7 - and when you factor in the fact that we actually love these difficult child creatures it gets more personal and difficult.

Take care of you - and look forward to kt's respite at the end of the month. Try to plan something low key and relaxing for you and husband for that weekend.


Former desparate mom
<span style='font-size: 11pt'>Linda, I get what you say about being annoyed that you are being chastised for being negative. On the other hand the therapeutic team are focused on the difficult child's and not us. The truth is that if they are being realistic, having negative responses to the wear and tear of difficult child's behavior on the one's who care and love difficult child's the team would deal with it too. It isn't wise to be too euphoric about a difficult child or too negative. Their behavior will swing once again to the other side.
The team should know this.

The team isn't really interested in your emotional state except as the caretaker of the difficult child's. We are parental units and are expected to heal ourselves or seek therapeutic help elsewhere.

Just remember they are just paid help and the buck stops with you. You are entitled and responsible to do what is necessary to keep yourself healthy and balanced.

Respite is a good thing for as long as you can get it. Vent as long as you want because in the end you get up the next day and do the same thing over and over. </span>

timer lady

Queen of Hearts
You guys know that I always always stand back up. Fran, you're right - these guys are just paid help. I have a personal therapist appointment tomorrow. Will discuss my emotional "lability", if you will. I expect he will tell me it's a common response to grief & the ongoing stressors that aren't going away anytime soon.

In the meantime, I'll do what I always do. I'm really not all that negative; it's more my jaded sense of humor that disturbs people. I'm just way more realistic than the team, as a whole, who aren't buried in the day to day stuff. While the team applauds & rewards for the least little positive, I expect positive choices on a daily basis from kt (& in turn from wm in group home). Well thought out choices with well defined consequences are laid out for kt. If kt makes a choice with a negative consequence ... well, it was her choice. She knows ahead of time.

I call it nudging to a more age appropriate frame of mind. To stop & think - connect the dots, etc, etc, etc. It's a life skill that kt must learn.

I have my own choices to make as well - taking care that I no longer get dragged down by antics & such.


The only way one could really do this without being negative would be to avoid emotional investment. We sure aren't here for that reason! So here we are. Roller coaster going up...

Keep your eye on the respite goal and make your therapist earn his pay today.

Many hugs.


I agree. I have had many scoldings, and these "scolders" have no idea what we have been through, going through. Nobody seems to realize our emotion. I had a hysterectomy two years ago. Some days I KNOW I am touchy and just want to not deal with things. Others have no idea. Always dealing with phone calls, reading, setting up plans, always listening to what difficult child has done. I feel so many times that difficult child is targeted before he even enters school. Or anything else. He has set a reputation, even though he has done a lot of growing up, a lot of changing, everyone remembers the bad and there is plenty good. Sometimes, just can't remember them.
I had a total hysterectomy, no hormone replacement. Hot flashes are unbearable at times. I think if I walked outside I would steam.
It is good to see others have same emotions at times. But sad to see at the same time. It is so hard. Went through the job loss a few years ago. Still will not come close to the wages I earned then. It is very hard to get past and move forward. I think of the 18 years I was there, I think of my friends there (who were told they can have no contact with me). I just keep telling myself, when one door closes another opens. Sometimes when I feel we are at the bottom of the barrel and things can't get worse..there is a new platform in that barrel and we fall farther down.
Sorry to go on. Just feel so familiar with this topic.


New Member
oh linda, we all understand, it is getting those who don't have difficult children to understand the sacrifices we make or the attitudes we have to take to get what is needed for our child.

we are only human and we can only take some much before something has to give.

saying a prayer for you cuz i admire what you have done for those twims so much!


(the future) MRS. GERE
Linda, I remember the year we had wraparound services.

We had visits from Rob's therapist and the behavior specialist and we had visits from his probation officer. Not to mention calls every day from school. And we had to go to the therapist appts and it probably wasn't even 20% of the intrusion that you have 24/7 and I recall that some days I just wanted to stand up and scream,

<span style='font-size: 23pt'>"What about ME???!!!"</span>

You have my sympathies.

Take care of YOU!



New Member
There are so many of you warrior moms that have been dealing with difficult children and different agencies and services for so many years. I am at the beginning. I NEED all the servies I can get. I want the wraparound services. I want people coming into my home and helping my family...I want to know what the plan is! My daughter's DSS social worker doesn't work on Tuesday..It was a holiday for us yesterday, so I haven't heard anything since Friday. She's been in Hotline Foster homes...which is understandable but meanwhile, nothing is happening as far as getting her help.

Sorry...just venting...

I read these posts and replies and I am so impressed with the knowledge and wisdom that so many of you have. All the hard work you do for your children. I don't know if I have it in me. I am not strong enough for this. And it's not even just difficult child#1. It's just that she is the one in crisis now. difficult child#3 has so much ahead, I'm afraid. They are saying they are not if regular kindergarten class is the best place for him next Fall. I have to educate myself to what he is entitled to so I can advocate for him. He's on an IEP and I have an Ed. Advocate.

It's raining and so depressing. Sorry for being so down...


New Member
I can say that the years we had so many services, we all felt like bugs under glass or specimens under a microscope and every breathe we took was scrutinized and very often criticized, altho there was hardly any time thru the day when we did NOT have some professional here. But I think the very worst part was when the professionals themself would not-could not agree on things and we would be trapped in the middle.....and things would get pretty heated.
Yes, all those years justifying our every move, defending every breathe, including what we had for dinner and when or how we bathed the kids........and later when I found out the hideous horribly damning things they wrote in our records when truth is we were only doing what all of THEM told us to do and doing it how they told us to do it 24-7!
And they insisted for all those years my son was a BEHAVIOR problem and it was my parenting...and Shriners found out no, he DID have the cerebal palsy and he did have seizures and it was THOSE that caused my sons inability to potty train, and NOT "my parenting" at all!
I truly hated having every stitch of clothing for me and the kids examined and commented on, especially when very often it was the case manager who bought the clothes.......hated one specialist saying you MUST use this behavior chart when the next one would walk in door and say "behavior charts increase incidence of sense of entitlement" and the 3rd one would walk in door and say HEY you did not follow this behavior chart properly becuz if you did, your kid would be behaving better by now.
And somehow I was supposed to maintain a stepford wife perfection of mood myself, nevermind I was also dealing with a terminally ill husband, and my mother and aunt who raised me died, along with my best friend, and I had become the sole income provider for us and was working double shifts 7 days a week?
Nevermind my own life threatening illness was also creeping up on me at my own back door........

It was absolutely nuts and insane how I was somehow managing and doing my best and holding up under it all, and these darn professioanls would go to set the next appointment, and they would name a day and time and I would loiok at our calender and say oh my, therapist for oldest has an appointment that day and time, and they would growl at me and tell me to get my priorities straight, and wrap would schedule a meeting and I would look and say oh, youngest child has a neuro doctor appointment that day and time...and they would hurumph at me and tell me ya know Mrs. so and so, THIS is important.
One year I had to cancel my own minor surgical procedure 3 times becuz they kept setting their appts on the day and time already scheduled for MY procedure..........
Yup we lived that way, WRAP, SASS, respite, homemakers, case managers, in home therapists and daily living skills workers and behavior mod docs and a psychiatrist for each of the 5 of us for many years....from 1990 till 2003.
It totally cracked me up when in 2003, they called me- my dtr was inpatient in psychiatric hospital and they said my dtr had "successfully" graduated out of their services, and they insisted they had no clue she was in psychiatric hospital. I know they had to know becuz I notified every single professional we had and the psychiatric hospital also paged them several times.
BUT then when I said "OK, wonderful" becuz I was tired of living that way....then they went and called CPS and tried to turn it around and say I was not seeking help for my kids........and I had to prove to CPS that I was taking the kids to the major teaching university so far away. Seems the local agencies did not want to keep us but they also seemed to not want us seeking help elsewhere, either.

It is my personal opinion, and mind you this is just my opinion due to our experiences here? I NEVER will willingly get entangled in THAT again. I did every thing the way they "advised" and I cannot tell you how many times THEY messed up and twisted facts and called CPS...when it was social workers or tdocs or respite people who screwed up. psychiatrist said put the kids to bed at 7 pm (becuz our school started so early, they had to be up by 5 to get to school) and respite called cps and said we tried to keep our kids in bed except when they were at school. therapist said if the oldest would not dress herself to be to school on time to take her there in PJs.well, school called CPS and said hey you cannot send a kid to school in PJs.
One WRAP casemanager said bathe the 2 girls together at nite, to save time.. so respite did, but then a new respite came and she called CPS and accused us of I am not sure what, but she had some personal problem with a 4 yr old girl and a 5 yr old girl being bathed together. But somehow it was ME who had the negative attitude. Look out, once they begin talking that way........sometimes things can escalate.and they might begin to question your ability to parent at all.......or they may decide you need a psychiatric evaluation or parenting classes or psychiatric hospital stay, or a visit from CPS. Agencies prefer to cover their own back side.and if your children are not getting as well as they want them to as fast as they want them to, they will try to find a way to make it be your fault, becuz gee, - they assume if it is not your fault then heaven forbid someone might blame them..........
The truth is my kids did some of their best learning, growing and maturing AFTER we no longer had so much "help" - and so did I. I did not realize at the time how much of me all the "help" was draining.
Are my kids perfect and non symptomatic? Nope. They are human beings with their own little faults, and warts.......some do put them at high risk out in the "real world" I still work with my now 18 oldest on a daily basis teaching life skills and I still oversee her peer relationships if she were say 12. I do see progress. and meanwhile I also still work with her for other parts of adult life, teach her cooking, laundry, shopping......
I am sure she will always have mood swings........I am sure she will always be vulnerable.........but she does continue to learn and grow and that is a good thing. As I look around the world, I see people all the time in all kinds of places in life who are NOT all so "stable" and yet they get by.some even hold professioanl positions......or high paying jobs......
BUT here in our home, we are learning to be comfortable in our own skin and accept each other warts and all.......and I am willing to be here as long as the higher power permits me to be here beside her helping her and guiding her and helping her learn to be an adult. I think she is just taking a little longer to get to that goal than some. Thats all. (and some of you might be thinking well dreamer, you won't be there for her forever, and yes, that is most likely very true, but the grim truth is that has always been true from the time she was born....parents can and do leave Earth even before kids are adults all the time- and another grim reality is some people no matter how many interventions and teaching they get, they simply are not able to be 100% independant)

I guess these days my goals are simply for calm, peace, love, best as we can accomplish. But I got so tired of being caught in the crossfire of the professionals who I do not in hindsight think accomplished anything at all all those years.

timer lady

Queen of Hearts
Again thank you ladies - I appreciate the response. dreamer, I know you've not had a great deal of luck with in home services & I'm sorry.

We have, for the most part, an exceptional team working with kt & wm. I miss privacy - yet for the most part, the team who enters my home is treated like family & contributes as a whole to our family.

kt's need is extreme - I wouldn't give up these services for anything other than kt outgrowing that need.

I've been in a funk - maybe spring fever will hit & shake me out of it. In the meantime, I will continue to take care of myself.

Thanks for the "cyber" shoulder.