On a good day, parenting will test the integrity of your character. On a bad day, parenting will test your will to live. Parenting children with trauma histories will cause you to test the integrity of everything and everyone you thought you knew, for the rest of your life.
~J. Skrobisz

Tuesday, October 19, 2010

The ignorant 90%

Going away is wonderful until about an hour before you have to pack up and go home.  Then  reality comes screaming back in your face. 

Our weekend respite for Sissy fell through at the last minute on Thursday so The Dad had to tough it out.  He was bedraggled by the time I walked through the door Sunday afternoon.  Sissy held it together all day Saturday but came unglued on Sunday before I got home.

Finding the need to "replace" another member on our therapy team for Sissy, in part because of the respite fiasco, I'm getting weary of discovering that the trained professionals know so little. It is tiresome to always be the on-the-fly educator for the newbies and even more exhausting when the newbs demand explanations for my parenting choices. Um, yeah. Ok. Because you've been doing this for HOW long and it's only your day job?

It's disconcerting to learn that at 36, I have wandered so very far from the nicey, nice little gal I was when I set out on a course for life. 99% of my attitude stems from butting heads with people that think they get it but have no earthly clue. The other 1% is grief knowing that I DO have a clue and really wish I still wandered the globe in ignorant bliss.

The staggering truth? Despite the fact that 100% of my social, educational, emotional, mental, physical, financial, and spiritual life revolves around being in contact with persons with mental health issues and developmental delays, only about 10% of the global population is afflicted. So my current reality represents only one tenth of the truth of what life could be like, if only...

I won't lie, it is extremely challenging to enter the homes of the very affluent persons that live in our community so I can wash their windows. Bathrooms larger than my bedroom (which includes our business office). Hall closets larger than my bathroom. Garages with automobiles that total in value three years of our earned income. Trappings and trimmings of life that I don't even know exist except for the fact that I see it in others' homes; that I don't know exist because I don't have time to even pine for trappings and trimmings, let alone shop for them.

Yes. I enjoyed the quilt retreat. For the most part, I sat under the california king size quilt I'm hand quilting. I sat and stitched and thought of many things. I tried to laugh and be merry but mostly I contemplated the silence and how blissful it was. I also tried not to be jealous. Some of the women had quilting supplies and accessories valued at more than a new automobile, and I quilt on a shoe string budget, scrounging remnant bins and ends of bolt pieces to acquire a stash of fabric that I might use later for projects that I self create. Oh yes, I do my own quilting math, thank you very much. And my machine is a 15 year old JCPenney model. Compared to the Berninas, Janomes and feather weight singers, my machine is like a two door 1973 datsun compared to a 2011 Lamborghini. They talked of their trips to quilt stores, conventions, shows and how they set up their sewing rooms at home and I ... had nothing. Nothing to say at all. Because what do you say when you're "sewing room" is the kitchen table that is still sticky from jam sandwiches?

My life is so radically different from anyone elses perception of "normal" that it's not even worth discussing. I'm tired of trying to explain it to people so they can get irritated at me or say something that irritates me. I'm tired of being the professionals' educator. I'm tired of being face to face with the other 90% of the world that doesn't have a clue.

AB had a rough morning and an equally rough afternoon. He bolted through the front door in a fire and a fury and threw himself on his bed when we got home from school. I went in to console him and he drew away from me and got as close to the wall as he could. Without a word, I grabbed the sensory brush, lifted his shirt and began brushing. He cried silently to the wall, I cried silently to the back of his head. I wanted to say, I know son, I know. I understand EXACTLY because I feel that way too. And there's nothing, nothing in the world I can do to fix it but instead of talking, I brushed. Then I rubbed his hair, kept buzz-cut short because anything longer becomes a sensory issue. I climbed up on the bed and hugged him, knowing he was safe at that point and wouldn't haul off and hit me. And I cried some more because I'm SO tired of telling Sissy's therapists, "BUT I HAVE AN IMPAIRED SON TOO!!!! SISSY ISN'T MY ONLY ILL CHILD!!!!!!!" He finally turned over and hugged me, wiping the tears from his eyes.

Sissy's weekday respite provider arrived on cue and I got up to greet her, wiping tears from MY eyes. "You OK?" she asked?

"Yeah. Rough day for AB. It kills me that I can't help him some times."

I wanted to say, but no one really cares, because you're all here for Sissy but what's the point? The rest of us?

The rest of us cry silently because what's the point of trying to explain it to the ignorant 90%?

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Jury's still out on how Sissy is going to do on geodon. She's getting hyper spazzy and her respite provider and I agreed this evening it's time for a call to the pdoc. Sissy's individual therapist asked her to journal her thoughts about returning to RTC (still waiting for paperwork - UGH!) and all Sissy had was I'd be sad and homesick.

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I got a lot done this weekend on quilts and such and will post pictures later as I have unfinished work still waiting on me at the table and I want to post it all at once.

6 comments:

Chris P-M said...

I just recently found your blog, and it's refreshing to see someone else's honesty about their situation! I have two kiddos who are adopted, one of whom with significant developmental days....and YEAH, it seems no one seems to GET it! (Even the "professionals") I also miss the days of "wandering the globe in ignorant bliss." Thanks for your candid-ness. It helps me feel less alone in our struggles!

Chris
www.acrazykindoffaith.blogspot.com

Bren said...

We have seen 11 "professional" therapists and they passed us around to each other like an ugly step-child. I gave up....NO professionals for us.
Quilt-retreat...what nicer words are there? We ALL have had a sticky kitchen table for a sewing room at one point or another. I have a HUGE sewing room in my basement all finished and beautifully done up, yet I find myself doing much of my quilting at the kitchen table anyway! PLUS hand quilters do not need all the fancy stuff....no big deal machines or expensive gadgets here either. A 2 dollar thimble, a pack of needles and a spool of thread and I am good!

Lisa said...

I am so...glad you were able to go on the quilt retreat - but I get ya about feeling out of place anyway. I can talk for HOURS/DAYS even about my kids issues and our struggles (if only there was someone to hear me, sigh) to find good mental health "help", but I feel completely ignorant about every other subject in the world at this moment. The search for help is all-consuming, almost smothering. My son's pdoc put him on a very old, powerful anti-psychotic the other day - as needed - for his long rage fests. It didn't even phase him. The pdoc assured me that if he took this pill, he'd be out for 4-6 hours (sleeping soundly) - didn't even make him drowsy. So, we go in today and he talks to him about his choices - to do nothing, contribute nothing to the family or the world in general, to keep demanding that others serve him. Big deal, it's the same speech over and over. My son cares about absolutely no one and nothing and will flatly tell you that he's not interested in changing. So, what do we do with him? He's not my only child with issues, he steals all of my time. We are looking into respite (that we still cannot afford) once again and I am DETERMINED to go thru with it. I am sick of people trying to diminish his issues and them telling us how sweet he is. He's not sweet, he can act sweet when he wants something and he thinks he'll get it. He can also be violent and aggressive and scream for hours if he doesn't think he'll get what he thinks he wants (and that's always changing from moment to moment) - but everyone ignores that aspect of who he is.

I completely get how you feel about money. I have been trying to dig our family out of debt for the past two years - debt that was incurred because we have crappy insurance and we were SURE we needed to try therapies and learning programs that weren't covered for several children who couldn't be bothered to put in any effort. Talk about eye-opening! We originally had about $70,000 in debt from these therapies/medical procedures, etc. We could have put an addition on our house (a quiet room for one), bought new vehicles, taken a vacation or paid for regular respite with that money. I am just sick of all the sacrifices we're making right now. I know we wouldn't be doing it if we didn't love our kids so much, but whenever my son complains about something not being fair, I just want to run away - or scream at him (I do neither, don't turn me into cps).

Integrity Singer said...

@ lisa - i'm so sorry you have had such a time of it! It pays to be poor in the sense that getting Sissy (and very soon, AB) declared medically disabled means we qualify for social security income. But that said, reading the article in our local paper this week, even WITH the SSI, our annual income is marginally better than a local police officer's salary which is less than half of the average family annual income for our community.

in other words, to qualify for SSI, you have to live at or below 125% of the poverty level.

BUT, the trade off is free respite, therapies, RTC and doctors for my disabled kids. sure, I live poorly, my shoes are worn, my clothes are from goodwill, and WG goes to dance lessons on a scholarship (because the owner felt sorry for her) but it's less hassle ... mostly. :)

xxoo

come to Orlando if you can

Elizabeth-Anne said...

Thank you for being real; how else can we see the light of God in your life except that you be willing to show us the darkness?

(((((((HUGS)))))))

J. said...

I hear you. Re-entry has not be too tough here but I really sort of felt the same way all weekend except for when i was Laurie, she gets it. Hang in there, may the coming week be a calm one.