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 etc.as 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, acceptance......as 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.
