Mid Winter Break

Okay, what's the deal with this Mid-Winter Break stuff? We never had this back in the day. We had Christmas and Easter break, then Summer. With a few holidays sprinkled in. No wonder America's doing so horribly academically. The kids are never in school.

Boy I'll tell you, a week at home with your two and a half special kids (Kobi is only about 1/2 "special" ) during freezing cold weather will definitely bring out Ms. Crabby Mom. At least it did in me.

Whoa.

I don't think they got to stay up late one night. The three of them make a potent recipe for mommie madness. Kameron and Klaryssia are both crazy stubborn, then throw in Kobi, my Drama King, and I'm frankly amazed we all survived the week.

Bickering (of the "she's looking at me" sort), mixed with boy-type exploits and my attempts to keep on top of work and school assignments (while feeding and caring for their needs) made for some interesting times. One afternoon, the Kameron managed to squeeze the filling out of a special gel-filled pillow left over from the last hospital stay. This was when the boys were playing in their room with the door closed. Closed doors are always a recipe for disaster, I think. Kobi decided to clean up the white foamy mess, and so water was added to this stuff.

It turns greasy with water.

By the time they came to get me to fix things, the white grease mess was everywhere. On both beds, in hair, on clothes, on the wall, all over the wood floor...you get the picture.

It took awhile to figure out how to get it off. BTW, in case this ever happens to you, the Swiffer wood floor mix doesn't do it; the Swiffer all-purpose floor cleaner, judiciously applied and dried with a towel afterwards, does.

Kobi did the drying.

I can't remember which day this was; they've all run together like a watercolor painting left in the rain...but today everyone's back to school. I'm hopeful I'll get some good work done.

I need to build up a backlog before Spring Break.

Big Dreams

I have big dreams for my little family. My older group - Kris, Kelsey, Elesha, and Kaleb - are all out of the house and pretty well on their ways. But for the three still at home - Klaryssia, Kameron, and Kobi - I have dreams.

The older kids all had pretty "typical" kid lives. Kris and Kelsey were involved in sports. Kris (Rain) played basketball and football through high school, both in school and on Colorado's version of AAU. He had a football and basketball scholarship for college. Kelsey did club gymnastics for many years, then switched to competitive and school cheering through her Senior year.

They went to dances, roller skated, and hung out with friends. We traveled all over Colorado, Nevada, and California for various tournaments and competitions - for both of them. In short, despite the decidely non-traditional family I built around them (the "original Rainwaters), I managed to give them a pretty well-rounded, fun upbringing. And they are really great young adults. I'm beyond proud of them.

But, these younger three haven't had those opportunities.

Most of their lives have been wrapped around Kameron and his intense medical needs. Months and months of their childhoods have been spent in waiting for Kam and me to go into the hospital; get out of the hospital; heal up from the last hospital visit; get ready for the next hospital visit.

Therapies, getting school arranged, getting medications (you'd be surprised how much time the whole prescription process can eat up); then just the regular stuff of regular life: laundry, grocery shopping, meal preparation and eating, keeping up on housework, homework (for Kobi), blah blah blah!

They haven't had too many opportunities for things like going to the Y to swim. Just heading down to the mall to walk around, or going for a family drive on a Sunday after church and maybe stopping off for fish and chips...or for after-school activities like the school carnival, or neighborhood movie night.

I'd like to enroll Kobi in martial arts classes, or drama. Definitely drama. Klaryssia could go to the Special programs they have for Special young adults at our local parks and rec department.

They are getting older, and I feel like the window I have for helping create childhood memories and experiences is slipping away for them. We spend most of our non-school/non-medical appointment time at home. Mostly because it's just so darned hard to get out. Things like helping Kam on and off a toilet take time - and when you are out, using a public restroom isn't the easiest - but it is possible.

But the biggest barrier is really the transportation. To be able to just lower a ramp, wheel him into a van, and strap everyone up and go? That sounds like a dream to me.

I can't wait. Thanks to everyone helping make this happen - thanks for caring,

Kathy, Kam, Kobi, and Klaryssia

Is it Just Me?

My kids are mega-spoiled. They are more demanding than rock stars who want their water a specific temperature and all the green M&Ms picked out of the bowls before they arrive.

"I need the blue bowl. Did you give me the blue bowl?"

"What color is my cup?"

"We are out of ice cream. When are you going to the store, Mom?"

"I want Cinnamon Toast Crunch. Go to the store, Mom."

"No toilet paper."


"Did you record Mickey Mouse Clubhouse?"
"Today is my bath day. I want to take it with Kobi.
I want to be in the frontnoIwanttobeinthefrontnoit'smyturnnoit'smyturnnoit'smine. ItsMINEEEE"


So when I was cruising through some old pics I have stored on Shutterfly.com from ages ago, like eight years or so, I was pleased to find that they stirred up some mommy-appropriate emotions. Tell me what you think...keep 'em?

The Daily Grind

This parenting gig is hard. I mean, I had a suspicion during the first twenty odd years. But, with this second group of kids (ages 17, almost 10, and 9), I am certain.

'Course, there are a few differences with this second group. The most glaring being that I am now twenty years older. Initially, I thought that should give me an edge. You know, I know the little ways kids try to manipulate you, have all the pat parenting answers down -

But these three defy my mom logic.
 
They aren't logical at all.

When you take three "damaged" kids, with a variety of issues and stir them all up in one household what comes out is a complete crapshoot. And by crap I mean the other word. Take Kameron at this very moment.

We have an ongoing power struggle between Kameron and Kobi over who opens the gate on our way out to the bus stop. They were alternating days, but believe it or not, that got too difficult to keep track of. So, in my infinite *cough cough* wisdom, I came up with alternating weeks. Mon/Wed/Friday one week, and Tues/Thursday the next.

This seemed to work for awhile. Kam just required one or two reminders, "What days do you have this week, Kam?"

"Oh. . . (insert correct days here)".

But lately he's been slipping. This morning, he argued for a good ten minutes that Kobi had Monday/Wednesday/Friday last week (which he didn't), and that Kameron himself was Monday/Wednesday/Friday this week (again). Evidently, he's wised up to the fact that Tuesday/Thursday is not the greater deal.

It went like this:

"Mom, can I open the gate?"

"No, Kam, Kobi is Monday/Wednesday/Friday this week."
"EHHHHEEAAAA!! Kobi is NOT Monday/Wednesday/Friday, I AM!"

"What days were you last week, Kam?"
EHHHHHEEEAAAAAA!!!"
"What days, Kam?"

"I was NOT Monday Wednesday/Friday!!!"
"Kam..."
"It's MY day to OPEN THE GATE!"
"Kam, what days are you this week?"
"IT's MY DAY! I am NOT Tuesday/Thursday!"

And so on, for about ten minutes. While I'm trying to get him on and off the toilet (I know, TMI) and get his AFOs on and get his teeth brushed and get him in his wheelchair. He also has this endearing habit of stiffening his entire 75 pound body when he's yelling. This makes all of the above ever so much easier.

I finally wised up and said, "Hey Kobi, you get to open the gate all week! Kam doesn't want his Tuesday/Thursday!"
"I do TOOOOO!"
"Oh, so you want to open the gate Tuesday/Thursday?"
"Yes".
 
Peace is momentarily restored.

This lasted until it was time to turn off Mickey Mouse Clubhouse and head out the door to the bus stop.

"EHHHHEEAAAAAAA! Do NOT turn off Mickey Mouse Clubhouse!!!"
"Okay, I'll just let Teacher Parnell know you aren't coming to school today, then. I'm walking Kobi to the bus stop, see you later, Kam."
"NO!"
"Oh, you're coming, then?"

And once again, peace is restored. Just like flipping a light switch, he's happy and deceptively compliant.

This crazytown adventure in parenting goes on every day in some fashion or another. Kameron and Klaryssia can pick the most seemingly unimportant, random thing and escalate it into a UN-sized crisis. My "normal" bag of parenting tricks applies not at all. And when the two of them feed off each other and Kobi thinks it would be fun to stir them up . . . I'm thinking 7:00 am is not too early for a glass of white wine.

I guess the biggest thing is that while engaging in power struggles with them obviously won't work, often neither does trying to twist their logic around. These kids have stubborn down to an art form - it's why they've survived so long against all the odds - and when they bring it to bear on me. . .argh.

Once again, the inmates are running the asylum. I think I need a vacation. Is it too late to turn these kids in for some nice grandchildren?

BTW I am having trouble with the new Blogger Editor - it's not formatting the text like it should,  I do apologize for the odd layout!

Disappointments

My daughter, Klaryssia was heartbroken last night.

She works as an unpaid helper for the Value Village near her high school. It's part of a vocational training program for higher functioning students in the special needs program who have educational goals directed toward independence after graduation. Well, semi-independence. Klaryssia will have to live in some type of supported living situation no matter what. She won't ever be able to live on her own.

It's not just safety concerns, although there are plenty of those. She is seventeen and is still learning basic household precautionary stuff. Like when she helps rinse dishes for the dishwasher, she usually turns the water all the way hot - not realizing that she could burn her hands. She's not safe with knives yet, either. She handles them like a young child might with no awareness of the danger from the cutting edge.

Basically, she's a six-year-old teenage girl. Her hormones and feelings are right up there around her chronological age, but her educational, social, and emotional functioning is somewhere in the first grader range. I think that's about as high as she will get.

Now, on the one hand that could be great for her. Living in a early elementary school daze just before the world gets really painful could be sweet. How simple life was in first grade, remember? Snacks and naps and coloring "I Love You" cards for everyone...Klaryssia will still pick yellow dandelions and bring them home for me and put them in water.

But on the flip side, she has that teenage thing looming. Not just the wild hormonal mood swings, but the trying to grow up stuff, too. She doesn't really have friends. For one thing, she is pretty annoying. Truly. Despite all the medications she's on, she has an incredibly amped up metabolism. This hyper-metabolism frequently results in non-stop talking at above conversational levels, and at such a high rate of speed very few people can understand what she's saying. She wants to be understood though, so she will repeat what she's saying over and over until you semi-get it.

Usually, these conversations are about her. What she had to eat today, what she will have to eat for her next meal, what her plan is for the day(taking a shower, taking out the garbage...etc), and she usually has the weather forecast for the week. Occasionally, she will throw you a bone, like, "What did you have for lunch today?". If you stop and ask her does she really want to know, she'll answer honestly, "No".

At school in her contained classroom there are a few kids that are pretty impulsive (that's the PC word for out of control). Because she can be so up in their faces and so annoying, she often gets punched.

Not too many friends.

So, here she is at Value Village. There of course, are co-workers that are what we in the Special Needs universe call "typical" people. This means they aren't mentally retarded. At least they don't appear to be. Most of last week and up through yesterday, Klaryssia came home very excited (she usually is about something). Apparently, co-laborer was due to celebrate her birthday, and wanted Klaryssia to come. I, the dutiful mom, asked who this person was. The information got non-informative.

Her age went as high as forty-two and as low as sixteen (after I expressed some doubt about my seventeen year old going to a forty-two year old's party). I told Klaryssia what I always do. Bring me home something in writing about this party and we will see.

Nothing ever made it home. But yesterday was apparently party day. She came home from school talking non-stop. Party, party, party. In Klaryssia's mind, her friend was going to call her and tell us where it was to be. She had a vague idea that it was on "119th Street". No address, no phone number for the friend, but it was supposed to start at 4:30.

Klaryssia raced through her chores, took a shower, got into clean clothes and had her jacket and purse set out in the living room, all ready to go. Then she waited.

Klaryssia can tell time. She watched the clock. She watched the phone. Her brothers came home on the bus. I started dinner. Every once and a while, she would remind me that her friend would be calling to tell us where the party was.

Of course, she never called.

Klaryssia started crying around 5:30. She was inconsolable. She wouldn't even eat dinner (and Klaryssia LOVES food). I don't know when she finally stopped crying, her eyes were pretty swollen this morning when she got up. When I asked her if she was okay, she said "Sure", and started telling me about how this friend would be at work today and something about how they would have fun...then she showed me a piece of gum this person apparently gave her yesterday. We spent a few minutes talking about that and how awesome it was that her friend gave her this gum.

Today, Klaryssia will go back to Value Village and see this lady who for whatever reason - probably well-intentioned but uninformed - did not make it clear to a little retarded girl that she wasn't actually invited to the party. I'm sure that this lady has no idea how truly important it was to Klaryssia. How very focused on the party she was, and how utterly heart-broken she was when it didn't happen. I'm also sure that Klaryssia won't tell her, because in Klaryssia's mind, it's all okay. She's excused this person, made up a story in her own mind that makes it okay.

I however, am her mom. And I will remain heartbroken for Klaryssia. I don't have any help for this, I can't make it go away for her. But I do wish people would realize that mentally retarded people do actually have feelings. We may not understand them, and we may not completely identify with them, but they are people. I love my odd ball daughter, and I am hurting for her today.

Klaryssia is a Typical Teenager...sigh

I've been parenting special needs children for fifteen years. In those years, I've learned a few things - not too many, but a few. I potty-trained a nineteen year old developmentally delayed girl with severe CP and seizure disorder. I cared for an ANGRY, dying young man with Duchenne's Muscular dystrophy who used to attack his mother with his power wheelchair. In fact, I took him on a 4,000 mile camping trip to the Grand Canyon, Sea World, Disneyland, Seattle, and back to Colorado. Interesting trip.

I parented a deaf and mentally delayed teen aged boy who would hit anyone with no particular provocation and was incontinent at night. I helped nurse a baby born at 25weeks who was ventilator and feeding tube dependent to relative independence and amazing cognitive development (see any of my posts about Kameron). I've worked lots of other children with a variety of challenging disorders, damaged family backgrounds, and severe behavior issues.

But I just don't get Klaryssia.

Klaryssia is my daughter. I adopted her at age eight; she's been in my home since she was six. She has a laundry list of possible diagnoses (many of these kiddos do), some of which are MR, DD, ADHD, RAD, and OCD. That translates: mentally retarded, developmentally delayed, ADHD (duh), reactive attachment disorder, and obsessive-compulsive disorder. She's on a varied assortment of medications. We've been working with several doctors over the years to tweak them. Her behaviors and moods make it hard for her to play well with others, in spite of all the meds.

She's seventeen now. So, in addition to her typically crazy/compulsive/out-of-control stuff, throw in puberty and teenaged angst. Yep, not only is she a "Special Child", she is a teenager, too.

She stomps away when she's mad. She slams her door. She bursts into tears unexpectedly. She yells at her siblings. She yells at me. She says stuff like: "I help wash dishes!" at really odd times, like that's supposed to explain why she's acting like a fool. She accuses me of not knowing anything. She also tells everyone else what to do, as if she's their mother. This of course, doesn't go over well with the the younger sibs. It REALLY doesn't go over well with the older ones. And, perhaps most importantly, it doesn't go over well with me. She yells at my kids more than I do. I have a fairly laid-back parenting approach. I mean, there is enough stress and strife inherent in our living situation. No one needs to stir the pot up unnecessarily, right?

That being said, I'm always game for someone else to be in charge of the zoo. Unfortunately, I don't think Klaryssia has the tools needed to take over. After all, I still shave her legs. She, however is pretty convinced that she can do a better job mothering than me.

Just like a few other teen aged daughters I've had. Come to think of it, I might have been a bit like that, myself...

Maybe she's not that different, after all.