What are your biggest chall nges?

Biggest challenges are figuring this site out after being gone so long. The next biggest is to make time for it. Too busy being a slave to others—including people, parrot & dogs…..oh, and also to keep a block of time for fitness.

Grown up Christmas

I live in Maine, today is Christmas day.

I have a special needs young adult daughter, who I love dearly, and a very sweet friend who lives with us.  His name is Jim.

I have grown increasingly  unexcited about Christmas for many years.  No, not the part about Jesus birthday.  The constant consuming mentality, and my daughter, who isn’t really bad about expecting tons of stuff, still thinks it should be magic, I think.

She gets pretty much anything she wants year round; so she understands why this year  we are going low key.   In October, after years of procrastination, I cleaned out her room.  She is sometimes like a 3 to a 5 year old; she needs supervision, and getting her to clear out or clean it just doesn’t happen.  The cleaning out took 3 pickup truck loads, at least, of ‘stuff’.  Don’t worry!  There is still plenty of ‘stuff’ left to sort through, when we are finished with our project. Our project has been to scrape the stickers off of her walls, repair the drywall damage (from her hands) cover the hideously colored walls that her older sister had painted them years ago.  We took two coats of primer on the walls, then bought 2 more cans of paint, of a color chosen by this daughter.  It’s a very pretty, pale aqua color.

I then  contracted with a big box store to come and replace the horrible awful worn out carpet.  It will happen soon; was supposed to happen before Christmas.  It didn’t,  but oh well, next week, I think.

This christmas for me, was low key and unenthusiastic.  Kiddo, my youngest was happy, and seems to understand that we can’t  turn her room into another trash heap of plastic toys, crap, and other consumables.

I am glad to be with 2 people I love.   I am grateful for everything around me.

I  disconnected from my mother a few years ago; I think I was 55. It isn’t that I hate her, or am angry at her.  A good deal of my life was spent trying to figure out why I was such a piece of shit, a worthless twisted, bad, awful woman.   This, according to

my mother.    She is pretty normal for periods of time, but there are times when a switch is flipped in her head, and she becomes a victim, begins saying crazy stuff, when I was a kid, it always floored me, and made me feel bad.  When you are 8 years old, and your mom tells you what a piece of crap you are, you believe it.

This continued all through my life; she always finding things to become offended by, when I adopted my youngest, (nigger this, nigger that,  who did I think I was?   I just thought I was better than everyone else, didn’t I? etc etc)  When I discovered my youngest had special needs–I already knew  that the birth mother was a drug and alcohol addict- there was constant harping about how I should put her in an institution, and how much happier I’d be if I did.  This from a woman who never ever met her, was never interested in her, constantly forgot her birthday, Christmas presents, while remembering my other daughter’s birthday, Christmas, etc.  I sometimes would contact her to see how she was faring.  I love my mother, just don’t want to be around her.  Every few years, I would take a break from her, and not have any contact, then, felt guilty, and re established contact, thus opening the door for her nasty behavior.   I finally got tired of it enough to just quit for good.   Others have told me ‘you should keep contact, in case she dies, you will feel awful’…..I don’t think this is a good or valid reason to re establish contact with someone who makes me feel very bad, physically and emotionally.   My dad died when I was 28 and she was 50.  Her 2nd husband also died (she didn’t marry for quite a few years) of cancer, so she is alone.  My brother and sister live within driving distance of her; even they don’t see her everyday or week.  I think that since I stopped contact, she dumps on them more.

Anyway, the point of this long ramble is that I saw a photo posted by my sister; each year she, my brother and my mom (plus my siblings boyfriend and girlfriend) show photos of all of them together.   I miss my brother and sister; I’d love to see them, but I cannot right now.  We all have our own lives.  If I went down there, I know my sister would bring my mother to the gathering, and I am done with that.  Not bitter, not angry, I love her, just don’t want to open any more doors.  I wish my mom well, but would love to see my siblings.  They are 49, and 51, I am 59.

That’s all!  Just wanted to vent.

Merry Christmas!

REtard in the car

Last Sunday was quite an active day; the first part involved driving my friend Jim to the hospital one or two towns over (the one he prefers).  He’d fallen down wooden staircase at 2 a.m., and there was quite a lot of blood, pain, confusions and contusions.  He refused to go to the hospital then (2a.m.)  I stayed awake for an hour or two, worried.   Then I gave up, went to bed.

The hall between the upstairs bathroom and the stairs is narrow-0ne step to the right, you can pee or brush teeth or shower.  One miss step to the left, and you can go crashing down.  He was not drunk, drugged or anything else, except exhausted from a 10 hour shift, where the work is pretty hard, and the help is not always very good.  He got up, and wandered off a bit too the left and I awoke to the sickening sound of flesh/bone impacting against stairs, over and over.  It’s a sound I’ve heard before, and nobody likes that sound.

Anyway, he finally asked me to take him around 9 or 10 a.m.    Spent a good deal of the day there, and then I rushed home to take Kiddo (special young adult daughter) to her ‘treat day’ where she can go shopping, or eat what she wants (you know, fattening, artery clogging stuff, usually).

We explored the stuff at Malwart, and some other places; then she asked for a shake from Dunkin Donuts.  Ok, drove there, but the shake/coolatta machine was broken.  We drove over to McDonalds, (fine dining,  don’t you know)   Over the last 10 years plus of living in this town, my kids have spent some cash there.  Even when Kiddo was on ‘paleo’ she wanted their bacon ranch salad, with grilled chicken quite a few times.  Earlier years, right after my husband died, and I didn’t feel up to creating dinner, I would buy  the same salad from them.   I don’t like their food.  (well, recently I got a lobster roll there, and it was good especially for the price)

Anyway, Kiddo has always been treated kindly by the kids and young adults who are cashiers and servers there.  Some know her from high school and greet her cheerily. Some are just nice kids, and treat her kindly.     That day, there was an adult from the kitchen, goofing off at the window.   He was not a server, he was about my age, and he was being funny.   He then looked at Kiddo, then at me, and made a remark about ‘the retard in the car’.

We took her order from the window; don’t know if she heard that shithead’s remark.  I waited a while, and drove back to McD.       I talked to the manager, explained how kindly folks had been to her all of these years, and let her know about the creep’s remark.   She is a pleasant young woman, and reacted to what I said (yes, I was calm, not mad, not vindictive)   with what they are told in the manager book of instructions =  she said ‘sure!  Un huh! Yes! Right!’    Pretty sure she did nothing.

I don’t want that guy to lose his job; he needs it.   He is my age, he isn’t on a career path.

What I wanted to say to that sweet young manager was this;  REtards have consumer power. Retards have money.  Retards go to places they like and feel welcome.

I didn’t say it though.  I tried to keep it simple, for a young lady’s perspective.

Went home, got on the McD’s website;  I wrote a brief letter.  My desktop is very old, it froze when I tried to send it.  I don’t know if they received it or not.

This place is in my town.   We wont go there again. They lost 2 customers that day.  I don’t know if she heard him, but it’s been a week, and she hasn’t asked to go there at all.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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.

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.

restless

It’s another beautiful day here in vacationland; think it’s not going to be too hot or humid, with a chance of some afternoon showers.
Today’s the day! Kiddo has a few hours with her behavioral worker, a lady who shows her how to behave socially in the community, how to figure out a budget (heck, maybe I should go along with them) how to do various everyday things that she’ll need to know for the future.
Then, a week of overnight camp, I’m so blessed! When she returns from her time spent with her worker, we’ll take a stroll, and then, drive to camp! Hurrah!
Yes, I love her dearly. Yes, I enjoy (mostly) the time we share. It’s summer vacation here in kidville….I need a bit of breathing space, and break from being on call, from being the (1) activity director (2) supervisor (3)butt wipe (4)shoe tie servant, and any number of other stuff I do on a regular basis.
Does she know how to do some chores? Yes. Lots of times, it’s easier to just get it done by myself, instead of being a job coach and stand and instruct, repeatedly. Then, there is always the arguing about getting something done. That’s any teen, but with kiddo it is times 100.
She’s improved in her behavior and has matured alot in last few years. She still is a 3 or 4 year old in many ways, but in some ways, she reminds me of an ‘almost typical’ teen.
I wont be inactive when she is having fun at camp. There is stuff to do, (plenty!) and appointments to keep. I just have a real hankering to be left alone for a while. No conversations, no arguments, no discussions, no answering questions with obvious answers (her way of chatting,and being reassured, I think).
Arlo the parrot, also is restless this morning, probably picked it up from me. He’s demanded buttered toast, yelled at the squirrels outdoors, asked to go out, demanded eggs, and asked for ‘bobbity’. Yes, he got the eggs, and I’m all out of the ‘bobbity’, which is a grain, vegetable mix I make. Gave him some other stuff too, but he isn’t satisfied yet. He went outdoors, and I can hear him yelling ‘your ears are wierd!’ and ‘stop that!’you are a wienerd!’ (he made that up himself; he used to love to eat little bites of wieners, when I’d feed them to the kids when they were little. He’d ask repeatedly for wieners…Finally, we began to tell him that he WAS a wiener. Then, he coined the phrase ‘you’re a wie-nerd!’)
I hope you all have a good day; it’s time to pack up for camp.

nature walk

Yesterday, kiddo and I went for a walk around the forested paths that are nearby the middle and elementary schools. We picked raspberries, ate them as we went. I had brought a plastic cup for her to put her berries in, because I know she likes to fill the cup, and then in the evening, enjoy them by herself.
The sun was warm on us and I thought back to May and June, when I wondered if it would ever get above 60 degrees, and if the earth would ever warm up enough to plant/grow anything. Took a break from picking and walked some more and stopped at a blueberry patch. I stood and watched her- what a picture it would have made! She, bent, picking the berries off the low to the ground plants, standing straight occasionally. She wore a blue shirt and olive capris. I wished for a camera, but only had my cell phone. It doesn’t download very well…

She harvested the berries unaware of her own sweetness and simplicity and my heart ached a bit for a few moments, as I watched a young adult, busy, focused on her prize.
It could have been anywhere; it could have been anyone.

hopefulcircus.wordpress.com

hopefulcircus.wordpress.com.