dont patronize me….do YOUR job

Today I had an interesting conversation with the woman who is the supervisor of the case manager of the organization that works with my special needs kid.

I know she is relatively new to the position. I know she doesn’t really have any idea yet, how to help me or kiddo, as far as information about adult special needs services, or the differences between chapter 28, 29 and 17, and which would best serve my adult child.
She is very nice. Friendly. Tries to be sympathetic, but usually comes off as patronizing. (‘weellll, that’s how teenager act, ….’ oh, really? ) Thanks alot, Einstein!

Teenagers, (typical ones) usually cant wait to get out of the house and see their friends. Teenagers dont sit in their rooms and play with legos, read Dora the Explorer, cut out coupons obsessively, shred their clothing, and chew their toe nails and finger nails til they bleed. Teenagers, by age 18 years can drive to their friends. Teenagers have plans, usually big plans, that involve leaving home. Non typical teens? Not so much.
Oh, yes, typical teens usually have friends to visit. Special teens have friends, but it isn’t the same thing at all.

Typical teenagers dont expect their moms to wipe their butts, tie their shoes, serve them coffee (well, maybe on that one) or a host of other things. Typical teens dont need to be monitored for safety reasons (yes, yes, I know, typical teens DO need to be montitored….just not as much, and not as intensely)

Typical teens dont throw tantrums like a 3 year old; not at home, screaming constantly, yelling at the tops of their lungs, throwing things around, and this isn’t just a ‘home’ behavior, it also happens at the store, when the ‘non typical’ teen doesn’t get her way, or is tired, or is unhappy. Sorry! Dont patronize me, and tell me my kid has all the ‘typical’ behavior of a teen. I can seperate the two types of behaviors, and I really dont need someone who is clueless about special population patronizing me.
Dont suggest for me to take her on a ‘field trip’ Huh? GMAFB!! Shop for school clothes? Thanks for the bulletin! If a typical teen can drive, they can (and do) drive to the mall and buy overpriced clothing by themselves. My goal is to prepare this kid to live elsewhere. Not yet, but in the future. You dont need to advise me on what I ‘should’ do with my special teen.

I dont need your advice about child rearing. You need to focus on learning YOUR job, then doing it! (haven’t seen jackshit yet) and stop telling me about MY JOB.

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less than 2 weeks—-SCHOOL!!!!

this is basically a rant or whine. Nothing to see here.

Kiddo and I are sick of summer. We haven’t had a bad one; matter of fact, this summer has been the best one of the last 17 years. Pretty sure I’m not exaggerating.

She still has her ‘off’ days, some of that whiney voiced 3 year old kind of behavior, a type of over the top, yelling nonstop, and if told to tone it down (hell, if told ‘shutup for a few minutes’) she’ll keep saying ‘OKAY!’ at the top of her lungs for at least 40 minutes. That is the last straw of distracting her, politely reminding her about behavior, etc.
One of the other tiresome, anxiety producing (for me) behaviors is the constant reliance on me for every fucking single thing in the day. When I am left alone is when she is busy lifting shit from my room, stealing money off the table, destroying her own clothing (the kid shreds her clothing like a pro; at the speed of light) and many other behaviors that I normally haven’t seen in a while. All are based on extreme boredom,(she’s a kid who is easily bored) which breeds anxiety for her (and then me). Please dont give me advice, you dont know how it is here—this is just a goddamn rant.
I take her for walks daily; it is the only reprieve I get from these behaviors. Sounds simple, doesn’t it? Well, why not just take her for a walk, then, all of the time? Well, the answer is, that she complains loudly, constantly, whining, yelling, objecting, nonstop loud talking, in a babbling sing song kind of voice, when she discovers it is time to go walking. It is if she hasn’t had the same experience every other day that she is with me this summer; some kind of unpleasant surprise, no, no no, no walk today, no, I dont walk today, is it long? Will it be looong? All this in a high pitched, quavering, whiney teenage/3 year old voice. Non fucking stop. She is non verbal, but not non vocal.

When we actually are walking, it is divine. She is engaged in her own imagination, she enjoys the actual walking, berry picking, exploring, discussions of the sky, the trees (well, a bit repetive sometimes, kind of hair pulling, after hearing ‘trees?LOOK!TREESTREESTREES! Trees!’ over and over and over. We usually walk in a certain wooded area, and sometimes will drive to another city to walk somewhere different (parks, or other wooded areas)
There are 2 weeks left til school. My own anxieties are beginning to grow. Have been practicing counted breath, and other forms of meditation early mornings, so I can control the anxieties. Some days are too busy, or I forget to do it early on, then get distracted by constant demands of the same old fucking shit, tie shoes, wipe ass, entertain me, no dont entertain me,I want this, I want that, I want it NOW; or me saying, what did you do with that ________ (fill in the blank, money, book, device, etc etc) her demands==I cant find X, Y or Z….No I cant find it for you – your room is a mess, why would I bother looking?
How can I escape this shit?
These are the days I would gladly let her live elsewhere. This is a kid I love. Counting down the days.

guardianship

Yesterday, my youngest and I went to the Hancock county courthouse to attend the last ‘guardianship’ meeting. The first one was for ‘temporary’ after she just turned 18.
Kiddo isn’t capable of being on her own yet, or perhaps ever, at least not without some other responsible person around.
That responsible person for the next while, how ever long, is me– …
We got the first, temporary guardianship in case there was someone around who wanted to influence her wrongly, to benefit from her inability to run her own life. (yes, there are folks around like that who prey on people….I know some.)

Got awarded the temporary; and an ‘advocate’ came to interview my kid, to make sure she wasn’t being held captive, that this was what she agreed to. (kiddo is non verbal, so I guess the visitor went away satisfied)
Yesterday, the same judge was presiding; it was good. He seems to be a guy who is paying attention. I was called to the witness stand, and (almost like Perry Mason!) spoke with the judge who asked me what my plan was. Huh? Plan? How can I plan? I mean, I have an idea or two, and hopes and dreams for kiddo. I truly think she is capable of many things, but am trying to learn how to bring them to fruition. I struggled with what to say to him, and thought about my late husband, and how we’d talked about our special girl and her future.
While in the witness chair, next to the judge, I struggled to explain simply, what her future might be. I knew she wasn’t ready to go out in the world alone. I knew she isn’t ready for a special group home. (no, not that, not yet, maybe never, but who knows? There are some good ones) I knew I couldn’t possibly send her to a special college 3 hours drive away, where she might be unattended at night. I tried to not to think of my husband/and those minutes that I tried to express her essence and skill, and what I would do, were the hardest things I’ve done for a while… Never have I missed my late husband so much, so longingly, to be with me and explain how we as a team were deciding. I tried to be concise, but how can you be concise about 18 years of working on a kid, who really was formless for so many years? I knew there was ‘stuff’ inside of her, but others didn’t know. I struggled to speak, almost came to tears, and reassured him she’d always have a place to live and I would work for the best for her, and not hold her back when the time was right. Only, it wasn’t right yet. I appreciated that he saw my sincerity, and remarked on it. (oh yeah, also told him I didn’t want to do the mommy thing when I was 80)
Inspite of how well it turned out, and he complimented me on my earnestness –I felt exhausted, and lonely for Joe. I wished he was there to counsel, support, encourage me that day. Never have I felt so alone, so tired.
The judge said ‘I am awarding you the same excellent job you’ve been doing for 18 years.’ I am glad he understood the struggle.