I'm very much a person that needs to get my thoughts out of my head - or they tend to haunt me. Talking to someone would seem a logical track to take in such instances but writing them out works better for me - plus there's nobody talking back while I'm trying to think. I tend to keep what I'm really thinking to myself until I can't take it anymore (not a good thing) so by at least writing things down I can express what's on my mind and then deal with it.
So....on to the events of last Friday which brought about a frenzie of feelings and a resulting pity party and led to me being online all day doing some surfing for resources of various types. Eventually I ended up at a site that listed some parent blogs and I started reading a couple. One in particular really caught my attention and for the next 3 days, whenever I had a spare moment....and even when the moments weren't really 'spare', I found myself pouring through this mom's blog - reading 3 years of archived posts with an obsessive need. This woman, a married mother of 2 young girls, living in the US. A young professional, a woman with passionate posts about religion, politics and many many things. Most touching to me is how she is a strong advocate for her oldest daughter who has Down's Syndrome.
Why was I drawn to her posts so much. Because my pity party was about just how hard it is for me to be a good advocate for my daughter. We had been to see the Children's Special Services Social Worker on Friday morning and as always, after we left then the words I'd wanted to say, the feelings I wanted to express came pouring out. I 'vented' to those that would listen but honestly what good does that do my daughter. I should have spoken up at the meeting and said my peace then - only that's not me. I don't think quick on my feet and only after the fact do things come to mind that I want to say. Why were we at the CSS offices? We'd been called in because with A turning 16 (omg...how can THAT be?) in a couple weeks, the process of transfering her case over to Adult Services is begining. So we had to sign paperwork authorizing the CSS office to access her school records, particularily any phychological assessments. And to that I say - hahaha....good luck finding anything since it's been a requested item on her IEP for years and I've yet to see any concrete documentation that any sort of testing has been done - ya....really good advocating on my part huh. (Bad Mommy Advocate example #1) So we sign the paper - that for the record didn't even have our daughter's name written anywhere on it! and I had to point out that fact to the SW. After that was done we moved right along to I believe was the true reason for this wonderful meeting. You see I'm a jaded person so I tend to think there are alterior motives for things people say and do. Would the fact that A is turning 16 soon and it was time to being the transer to Adult Services have even come up this week had it not been April? April is funding month and in my experience that is when we 'hear from' our SW. She has to put A into the budget, so I guess now is a good a time as any to 'check in' with us and see how we are doing not that we talked about 'how we are doing' but rather what sort of services can the SW pop into the budget for this year. In the past this has been them paying for her (and an assistant) to go to camp for a week... effectively using our allotment of respite for the year. Well, last year A decided she didn't want to go to camp and even though the SW tried a couple times to convince her, she does not want to go this year either. I think i've finally caught on to this game. They want her to go to camp for the simple fact that it is a number they can plug into their budget for the coming year. "oh look what we've done for A this year....we spent $800 on 'respite' care for this girl and her stressed out family" Now don't get me wrong....I value the assistance and money spent on camp but in hindsight it sure made any other sort of support non-existant...not that in my jaded eyes I think there would have been much other support given. In addition to camp, a string of workers over the last couple years have also been taking A out for a couple hours each week to various activities - special o swimming or just hanging out and some experiences were better than others - and ironically this is usually the time of year that our SW magically finds a new worker for us. While it's nice to have that break for a couple hours it's not what i would call 'support'. Anyway, since she's refused to go to camp this year we now have a meeting with yet another new worker and since we (her father & i) couldn't come up with things for them to do together last friday, we are to "bring some ideas" with us to the meeting with the new worker next week. Why is she getting paid and yet I'm the one that needs to do the brainstorming...... AND THIS.....is the 'programming' that I am now going to have to fight for the next 2 years till she is 18 for the Adult Services division to continue. Continue? continue what programming? And just to clarify - many of the people who have worked with A over the years as a worker have been truely amazing people and we value their help highly....I'm just disapointed in the level of services provided by the people higher up in the food chain - the social worker(s).
Right at this point I'm damn frusterated and feeling very unworthy as an advocate for my child -- and for the rest of my family. I dropped the ball many years ago and stuck my head in the sand and feel a whole ton of guilt at the moment after reading how others' are advocates for their children. Bad Mommy Advocate!
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