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.

Why Special Needs Kids?

Okay, so we've established that I'm completely nuts. Not only did I decide, fifteen years ago, to become a foster parent as a single mother, I already had two children, but what the heck??? I decide to be the foster parent to special needs children. See? Nuts. But wait, there's more!

THEN I decide to adopt some of the little boogers. Whoa. Certifiable.

Yes, I agree. People tell me I'm a freakin' saint. Not so. Not so at all, in fact.

I think it's more obedience. Foolish, sold-out obedience.

See, back when I was doing the big house, tons of foster kids, crazy ranch thing, I was also practicing a very simple faith. He said it, so I believed it.

His Word said to love as I'd been loved. I'd been transformed by His love, so I knew it was real. Therefore, I needed to love that way. Simple, right? Along came my first disabled foster children. Okay, they're a little odd. Yes, it was weird having teenagers in (gulp) diapers. But that love thing? It didn't have any strings about diapers on it that I could tell.

So, I loved them. And God took care of us.

More special kids came. Come to find out that "love" thing can cover a whole bunch of inexperience and lack. I learned about PTs, OTs, STs, and all the other "t"s. (Therapies). I learned about a whole cornucopia of medicines. Meds for Seizures, meds for constipation, meds for ADD and OCD and all that stuff. I literally had a tool box locked up filled with meds for these children.

Oh yeah, children. They were little people. On the foster care totem pole - which already has an awful lot of damaged and unwanted children - the DD/Special kids were pretty much at the bottom.

But they are children. And they are people. Little people let down by parents who probably were damaged themselves. Some of my kids were from "typical" homes where the dad couldn't hang and took off, leaving a mom alone with a child she couldn't find resources to raise. The way our system is set up, if you have a job and a special kid, you won't get much help. If you put him or her into foster care, though, then they can receive all kinds of services. Or, you can quit working and go on "assistance" yourself. Decisions, decisions.

So along the road of just loving these children, I found out a funny thing: I actually did love them.

Beyond the diapers and drool and slurred speech and repetitive behaviors and braces on body parts and range of motion and equipment needs and meds and doctors appointments and tooth brushing and IEP meetings and hospital stays and fighting with everyone to advocate for these kids . . . is the bottom line fact that they are children. They didn't ask to be born. They especially didn't ask to be born the way they are. They didn't ask to be abused or neglected or abandoned.

Someone has to care.

And I'm exceedingly glad it's me.

¹²He said also to the man who had invited him, "When you give a dinner or a banquet, do not invite your friends or your brothers or your relatives or rich neighbors, lest they also invite you in return and you be repaid. ¹³But when you give a feast, invite the poor, the crippled, the lame, the blind, ¹⁴and you will be blessed, because they cannot repay you. Luke 14:12-14a

The Road Taken

I've been a single parent to special needs children for over fifteen years. This has been by my choice - I fostered my kiddos before I adopted them, and I had many other special children in my care for quite a few years. So I went into this "specialized" gig with both eyes wide open.

Now, I'm not saying it's an easy gig. Or, that I was 100% prepared for the intense level of parenting it is. But, I've really been noticing the difference choosing makes.

Let me explain.

I have a friend whose boys were born autistic. Her marriage broke up when the boys were in elementary school, and she's raised them on her own ever since. Now, they are in their late teens, and she's still alone, loving her boys, taking care of them, and trying to make their lives as happy and "well-adjusted" as square pegs can in this round-hole world.

They do movies, and sometimes the Art Museum. Disney on Ice is a big hit for them, too. They make it every year. They're a bit conspicuous at Disney, though. Her "boys" are both well over six feet and not small. But, they squeeze into the little seats at the Arena and wear their mouse ears with pride as they sing along with the Princesses. They love to go to the zoo, and the State Fair each summer.

I admire how much they do, how active they are despite some significant behavioral challenges.

But, one night over a glass of wine, as I was rambling on and on about how gorgeous my new granddaughter was, and how sad I was that my son and his little family lived so far away, I happened to notice her face. And it hit me like a forehead slap: she would never have grandchildren.

My heart just slipped down from my chest into my stomach, and I felt tears behind my eyes. Oh my word. Here I was going on about missing my son and his family, and here she was - mourning what will never happen. Wow.

I apologized. Sometimes I'm pretty slow.

The list of "nevers" for our kids can be long. Kameron may be eleven, but believe it or not, things like his inability to walk, run, play "real" basketball, swim, rollerskate, ride a scooter--these loses are just now starting to dawn on me. It's like all these years have been spent busily keeping him alive and striving for immediate goals. Things like keeping food down, breathing, and talking - these were his developmental milestones. At least as far as I was concerned.

Lately, though, I'm grieving those losses for him, and for me. All the things traditional parents of special kids have to work through over the years, as their baby grows up and they find something else he or she should be doing, but can't, I'm just now figuring out. Just now seeing the very wide chasm between Kameron and his peers in 5th grade. And it sucks.

But underlying that suckiness is the very strong awareness that if it's this hard for me, this late in the game, how much harder would it have been to feel him grow in my uterus, kicking and swimming around in there, anticipating his arrival, choosing names, talking to him as he grew, having baby showers, fixing up his room...and then have all that crash around me when everything goes completely wrong.

And then it keeps on going wrong, despite your best efforts for your child. That list begins to form.

This is not to say that parenting a special needs child is a thankless, hopeless task. It simply isn't. And most of us will tell anyone that. We celebrate all the tiny victories - and I think that makes us grateful people.

But, it is a grieving thing, too. Our entire belief system has to adjust and change. Dreams for the future of our child need to be adjusted and reevaluated. Our whole world is turned upside down and inside out, and it takes time - maybe a lifetime - to get used to it. Because the reality is that the upside down, inside out world is our new home.

Whether we chose it, or it chose us. Better head on down to Target and get some stuff to make it cozy.

Love -

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?

Me Who Used to Be Queen

I haven't exactly made it a secret that parenting - always a rough road - has taken an unexpected detour OFF road lately.  My three kids still at home (aka the "little" kids) seem to have made maps of their own including some major potholes, dips, and a bunch of dirt roads.  And I don't have a four-wheel drive anymore.

I think Kam's has a street or two that have "DANGER ROAD CLOSED AHEAD" on his map.  And he's all into the adventure of finding out what happens when you make mommie drive down them at high speeds.
See, since the "big" kids have all moved out, I have no more buffer between myself and the remaining children of the corn sleeping under my roof.  No one is on my side (I'm not allowed to have one anymore).  My older kids were pretty darned respectful.  I only had to say "no" a few times for them to get it.  They didn't ask, "whhhhyyyy?????"  every time I asked them to do something, or just flat out ignore any words coming out of my mouth.  Even when spoken directly into his or her ear. 
Seriously, they were pretty decent kids.

As they grew up, they helped the smaller fry stay on track.  When Klaryssia, Kobi, or Kameron would question me incessently (and I'm talking twenty-plus times), a larger kid like Kesley, Elesha, Kris or Kami, would set them straight.  You don't talk to Mom like that.  There are consequences, come on, let's go play basketball in your room. .

No more.

My royal guard has abandoned me.  I am on my own.  Why is this just sinking in, you ask?  After all, the last big kid left in August. Yeah, well I'm a bit of a slow study.  At some level, I think I figured ALL my children - since they were raised in the same house, with the same rules - would catch on, fall under my spell, and magically behave like reasonable people.  Eventually.

Wrong
Wrong.
Wrong.

I've been thrown back into parenting 101.  Maybe I'm not even in a 100 level course yet.  Maybe this is a 60 or an 80. Or maybe this is a graduate level deal.  Maybe this is God's Phd. course in parenting. . .taking me to the upper-echelon of moms. . .

Nah.  This is either remedial parenting or purgatory.  Maybe the Catholics are right, after all.

Even as I type this, at o-dark-thirty in the a.m., Klaryssia has come out at least four times to tell me the weather report for the day (I don't care), show me what she's wearing (ditto), to tell me she's brushed her teeth (check), and to explain to me her schedule for the day (again); Kameron (up since 5:20 am) is explaining to everyone that he does NOT have a doctor's appointment (he does), telling Klaryssia that she needs to take her meds (she already did), and I can hear him taking off the floor vent in the bathroom, probably shoving his clothes for the day down it; Kobi is trying to convince him that he does have an appointment, (pointless, Kobi, you are wasting your words, trust me), asking me how to turn regular instant oatmeal into brown sugar oatmeal, and dragging his wet bedding out to the washer (while asking why "we" haven't washed his wet sheets from yesterday - "we" were working all day, master and haven't had a chance to get to your damp bedding); and the noise is escalating.

These skirmishes occur constantly.  If they are up, they are fighting about something.  Anything.  Everything.  Last night it got so bad I wanted to leave the house.  


Not an option, though.  Failing that, I grabbed a glass of wine and my Ipod, found the loudest playlist I could find, and sang my way through dinner prep.  All through it, they kept popping into the kitchen (guess that's because with the blessed music playing, I couldn't hear them yelling, "MOM").  It was awesome, because their little mouths were opening and closing and I couldn't hear a word.  

Santana Danced me Through the Night, Grits had me Runnin', and Kenny Chesney reminded me about the sweet Summertime. . .

I know I keep harping on this, but seriously I've been blindsided.  I foolishly thought I had a handle on parenting.  After all, I ran a home daycare; I raised my own two kids; I fostered countless others - at one point our big house in Colorado had four adults, fifteen children, and almost that many pets.  We survived snow storms, power outages (when Kam was on a ventilator), dying chickens, a horse that peed on the front lawn, multiple bus and school schedules, and still found a way to have Kelsey in competitive gymnastics, Kris in basketball and football, and everyone else at their myriad doctors and therapy appointments.

Now here I am, crushed and bewildered by these three.
It doesn't seem right.  Somewhere in my brain there must be skills I can use against these heathens.  And when I figure out what they are, and my heathens become children again, I will be expecting my Peace Prize.

Or at the very least, a little peace.  Which is probably better.
I could use the million bucks, though.

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!

I Have a Confession. . .

I have a confession to make:  I haven't been to church in months.  Really, months.  Since Rain's wedding in July.  That's a very long time.

Why?

Lots of reasons, I think.  None of them good, none of them important enough to keep me from worshipping in fellowship with other believers.  I think.

Maybe it's just enough trouble within my heart and just enough difficulty getting there. I still haven't re-established a healthy communication with God; still not praying/talking with Him regularly; still not "in the Word" as we Christians like to say. . . I used to devour His Word.  Literally eat it up. 

I miss that.

I miss talking with Him and hearing from Him.

So, why am I resisting?  No clue.

I haven't stopped believing.  I know He's real.  I know He is good. I've walked with Him for twenty years. . .

Every Sunday, the kids ask if we're going to church. 

We don't go. 

It's always been difficult to go to church.  Well, not always.  Mostly since we moved to Colorado Springs, that's when the "difficult" started.  At that time, it was just me and Kelsey and Kris.  A young, firey white girl with two little bi-racial children (who were adorable!).  For years, I discounted the polite looks, the quiet exclusion from conversations, the sense that somehow my little family just didn't fit in. 

I found myself switching churches.  I'd never thought I'd be one of those.  After all, we have trouble relating in our families, why would a family of believers be any different?  But somehow, it was.  Somehow, my heart just couldn't take not mattering.  I was in Bible studies, in choirs, led children's worship with my trusty guitar, went on ladies retreats, joined small groups, led small groups. . .and still failed to make strong connections with anyone.

I was a single mother, going to the denomination's Bible College, working full time and taking classes full time, and still "ministering" in the church . . . and I never felt so alone.

It certainly didn't help when I bought a huge house out in the country and filled it up with handicapped children.  My enthusiasim and passion and belief carried us far - especially in making all the parts of the house and care for the children work - but even then, I couldn't truly connect to the Body.  When I approached the Pastor about someone from the fellowship helping with my special needs children in a Sunday school class (both for the children and for me, so I could attend services and not be sitting on the pavement outside holding an unruly child on my lap listening to the service over a speaker); his response was that if I felt there was a need, probably God was calling me to that.

Naively, I thought well, okay, and started a Special Needs Children's Sunday School class.  So, not only did I get to care for my kids 24/7 at home, I got to take care of them and other kids on Sundays, too.  And, I now had the extra job of finding helpers for the class.  Wow.

But, I don't want to go into all this here.  I mention it to say that I'm pretty sure that a huge part of why I am not going to church today is that, while I've found a Pastor I respect, and going to his church completely satisfies my heart - I am still very aware that my special child (now only Kameron), is a little different (well, alot) and doesn't fit into any nice age group of Sunday School children.  With his mental and physical delays, he's better suited for a first or second-graders class than his chronological fourth grade one.

In short, he takes more effort.  And, even in our large church with all it's many many ministries, there doesn't seem to be anyone who wants to take on this little child, even for a few hours on Sunday.  And it breaks my heart - again.

He benefits so much from God's Word and from the music - he memorizes scripture like crazy, and he's the first one to ask if he can pray for you if you have a problem.

But, he is different.  He is in a wheelchair and talks funny and is in diapers. He can have inappropriate behaviors (like throwing the playdough around and laughing like a lunatic).  He isn't an easy child, I know this.

But doesn't he matter to God?  Of course he does.

Shouldn't he matter to a body of believers? Of course he should.

He is the least of these; one of those Jesus spent time with while here.  Kameron matters greatly.

I have to say that I hate writing this.  I feel like I'm being horribly disloyal and expecting too much and that the problem must be mine, not anyone else's.  Like if I really want to go to church with my handicapped son, I should go - full speed ahead and damn the consequences.

But the zeal and fervor that kept me plowing ahead like that for so many, many years is pretty much gone, now.  I am tired.  I am tired of fighting to be included - heck, not even included, just to get in the door (there's no handicapped access to the children's ministry).  I'm tired of cheerfully smiling at the pretty young couples with their beautiful children who all quietly step back a few paces and try not to look like they're checking us out.  I get it all the time out in public, twenty years of it.

It hurts too much to see it in church, too.

And so, another Sunday is spent at home.  And I hurt.  I hurt for Kameron, I hurt for Kobi and for me.

At some level, I hurt for those missing out on getting to know Kameron, too.  He is a very special little boy.  He deserves that love and acceptance.  But, I'm just too tired to fight for it right now.

It's a Bird! It's a Plane! It's...

Kameron my nine year old, is, to me, a superman. Well, maybe a superboy. It's been awhile since I told his story I think, so I'm going to tell it again - hey, it's my blog, so I can indulge right?

Kam was born Kenny in Denver Colorado on January 1st, 2000. Now, before you ooo and ahhh about how cool that birthday is, I want to warn you that he was born THREE months early. Yes, three months. At birth, he weighed a little over one pound. He had a brain hemorrhage that contributed to the calcification of 45% of his brain. That means almost half his brain was turned essentially into bone. He couldn't eat, his optic nerve was seriously damaged from the hemorrhage, his lungs were unformed...in short, Kenny was a mess.

His mom and dad were encouraged from the get-go to disconnect the life support from little Kenny. They declined. Soon, it became evident that mom and dad were less than stellar parents (I believe they had a fist fight in the NICU), and the courts stepped in with a protective order for him.

Within three months, the hospital declared him well enough to be discharged to a foster home. His first foster mom disagreed. Kenny was supposed to be bottle-fed, yet he wouldn't/couldn't suck; he still had significant breathing difficulties, and was on oxygen, but it didn't seem to be helping. She was concerned about his listlessness, his pallor. It seemed to her that the hospital was trying to discharge him so that he might finally die. She wasn't into that happening on her watch. The social worker must have agreed with the hospital, because she didn't want him back in the hospital, and so Foster Mom #1's agency moved Kenny to another home. Thankfully, this Foster Mom was newly licensed because she'd just left her former career as a NICU nurse.

She took one (okay, maybe two) looks at Kenny and whisked him off to Children's Hospital in Denver. There he was put on a feeding tube and a ventilator. Eventually, he had surgery for his retinopathy (eye problem, not the optic nerve damage though), and was diagnosed as having bronchial malaisa. Basically, his bronchial tubes weren't formed enough for him to breathe.

He stayed at Children's for the next year. He grew, and his lungs matured a bit, but not enough to get off the vent. Parental rights were terminated (his mom and dad stopped visiting shortly after the ventilator was attached to Kenny's throat via a tracheotomy). And Kenny finally stabilized.
Here I come. Crazy Foster Mother to I don't remember how many at that point, and really wanting a baby. Now, I guess that most people, when they think of a baby, don't think of a baby with Kenny's special needs. Actually, I didn't either. But from the moment I saw him in Denver, I knew I wanted him.

Anyway, long story short, Kenny came to live with us. It took many weeks, months maybe, to get the house and us ready. We had to hire a private duty nursing company to take care of his still significant medical needs, occupational, physical, and speech therapists to try to get him functioning at any level he could achieve, a special chair was ordered that would hold both Kenny and his ventilator and two batteries for our trips out of the house. And on and on. We had a ton of prep work for this little boiyo. In the end, it took us a little more than three years to get him off the vent and the feeding tube, and right after that, his lungs were declared healthy enough to be off oxygen completely. He was doing terrific. Better than anyone expected, especially his doctors.

August of 2003, Kenny became Kameron, and an official member of my little brood.

Then, when he was about to turn five, all heck (and I mean the other word) broke loose. It was Halloween, and Kam had been sick all day. It looked like the stomach flu, which made sense, because several of the other kids had been sick. But around dinner time, Kam had a grand mal seizure and I called 911.

Weeks in and out of ICU in Colorado Springs, and no one knew what was wrong with him. Most of the professionals agreed that he'd just begun having a seizure disorder. After all, look at his CT - look at all that brain damage. I disagreed. Kameron had never shown any hint of seizure disorder, and even so, the way he was seizing didn't look to me like a typical disorder.

Eventually, some technician saw a shadow on an MRI, and it was decided he had an Arterio Venous Malformation: an AVM. Some of the symptoms were migraine headaches, seizures, possible hemorrhage, and stroke-like features. We almost lost him several times.

More long story short, some serious brain procedures - like thirty or thirty-five - later, and one brain surgery last August, it looks like maybe the AVMs (turned out to be a ton of them) are shut down and not growing anymore. Yay!

Now nine and about as healthy as he's ever been, Kameron is finally getting a chance to grow and develop. He is in a wheelchair, but can use his legs, and if the medical equipment powers-that-be could hurry up a bit, he will soon have a walker to use. The idea of him standing and walking on his own is beyond thrilling.

Also, this little boy who wasn't supposed to live, then wasn't supposed to ever talk or eat or have any signs of intelligence, not only talks (a LOT), he remembers people and their names, he sings a ton of songs, he remembers scripture verses, loves basketball, and on and on. AND he is learning addition (ask him what 3+5 equals and he will tell you 8), and just the other day I posted a pic from my phone on Facebook showing Kameron reading on the toilet. Now, this wouldn't be extraordinary for most kids, but Kam, with almost half his brain severely damaged and about nine years behind the rest of the pack, was actually reading the words - all of them - in the book. Not bad for being "blind".

I guess the moral of his story is that you just can't count anyone out. No one told Kameron he was supposed to die - many times over by this point. No one told Kameron he couldn't read or learn math. No one let him know he shouldn't be able to dribble and shoot a full sized basket ball. He just keeps on going. Who knows where he'll end up? I can't wait to find out.

As always, thank you so much for reading. I know you have your choice of blogs, and am grateful mine is one of them. Much love.

Field Trip Fun . . . Day Two

Okay, here it is! The promised post on our Field Trip
Fun, Day Dos. This is Kameron's third grade class:


Note that it's much smaller than Kobi's. Also of note, we got Naturalist Rhonda again! Of course, I'm the only one who understood the significance of that fact, since I'm the only one who saw her the day before, but I thought it was cool. No word from Rhonda on how she felt about it.

Ms. Parnell is Kam's teacher. She's the lady in the back wearing pink and looking vigilant. She looks vigilant in most of the pictures I took that day...this is a good thing. Her class is very mobile and active. Vigilance is called for. Believe me.

Rhonda is giving instructions on how to treat the beach. The teachers are wondering if Rhonda knows what she's up against. The kids look like they are paying attention...heck, maybe they are! Note here that Kameron is not in the picture. Kameron was already "acting up" (aka, being a butt-head). He was hanging with me. Not fun, I hope.

Here is Kameron returning to the group.

It took him a minute to warm up.

Finally, he gets on board. . .

and okay, let's look for sea creatures!

After some initial hesitation - she didn't want to get her feet wet - Taylor decides she's into this.

Here she is trying to meet a tube worm. . .

that didn't go so well, on accounta that "don't squish the tube worm rule",

so she and Allison explore the kelp.

Meanwhile, some of the boys are looking high







and low. . .

for signs of life.

Yonny double-checks his guide.











There weren't many creatures to be
found this day. Bummer.

But Kameron didn't care. He got a piggy-back from Kelsey.
As far as Kam's concerned, any Kelsey-time is a good time.

Back down at the shore with the group, Kam wonders why the HECK he CAN'T throw sand,

Ms. Parnell? What's the dealieo with that?

Eventually, I'm sure, the class did find sea life. But by then, Kameron was back on dry land, having exhausted his chances to be "good". Such a relative term, isn't it? Good/Shmud. You say Potato, I say Tomato. Right?

They did appear to be having fun, though.

And for the munchkins in Ms. Parnell's third grade class at Hazel Valley Elementary, any and all field trips are most welcome. These little dudes and dudettes just love being outside with people who care about them. That's the best fun.



Thanks again, Seahurst Park and Naturalist Rhonda.



















And to Ms. Parnell, her asst. teachers, and the kids in Kameron's third grade class, thank you for letting me come on your awesome adventure! See you next year, I hope!

Rainy Saturdays

Sorry for all the parent talk, but since I appear to be a life-long mom, and now have these freaky little boys, it's on my mind a lot.

Today, Kobi and Andrew are wearing t-shirts on their heads and shaking their "booties". Let me be clear, I don't watch much "bootie shaking" on TV. I am not a proponent of "bootie shaking", although, in my sordid past, I was. So where this nonsense is coming from is a mystery to me. Why can't they just play with trucks and guns like other boys?

Meanwhile, Kameron is sitting on the toilet screaming and laughing. I expect him to momentarily start turning around to view his poop (another boy thing, I guess), which will lead to smears on the seat...you see where this is going. Yuck.

Meanwhile, I'm doing laundry, wiping down tables, helping my 21 year old with a three page essay - over the din.

Such is a rainy Saturday in the Rainwater manse. My monologue consist of lots of "NO", "Go to your room", "Stay out of his room", "Don't pull down your pants", mixed in with a generous helping of "No running in the house" and, that classic, "BECAUSE I SAID SO".

Helping with chores? Sweet pancake breakfasts as a family? Perhaps a family outing?

Nope.

I need to get out more. Or someday, people will be hearing about us on the evening news. Just kidding.

I think.

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.

Help! The Inmates Have Taken Over the Asylum!

Okay, so at some point in my illustrious parenting "career" the balance of power shifted. Subtlety, so insidiously that I never even suspected it, our family went from a solid dictatorship with all my little subjects firmly under my boot to a full-on rebellion with the entire population participating. In fact, they have me on the run.
I find myself hiding in my room, earbuds in listening to Praise music in a desperate attempt to regain my calm Center.

It is amazing how completely three (sometimes four if Klaryssia isn't having one of her many daily naps), small children can toss off parental guidance and discipline.

Whatever. All I know is that my initial parenting go-round was infinitely easier. Kris and Kelsey, my"original"children, were pretty easy-going. They had thoughts and opinions on things - but for the most part, they were agreeable to rules and went along with them. Of course, here and there they threw down the gauntlet and challenged my authority. But really, they were kind of easy to parent. Which was truly a blessing because as a single mom working full time and attending school, if they hadn't been such awesome kids...I don't even want to think about where we might be today. They made a difficult situation easier to bear, and I appreciate them beyond words.

Now, this second batch of kids. My Little Rebels. They tend to make every situation way more difficult then it ever needed to be. Everyday situations become major skirmishes. They must love the thrill of battle.

They have no use for my rules unless one of them is looking for protection under them.
Instead, they are writing their own rule book. I guess it's good they are trying to be united in their dissent. It's the only thing they agree on.

One of the biggies is the Rule of Mine: if I want it, it's mine; if I have ever played with it before, even if it's been lost under my bed for three years and you find it, it's mine; if I put it down for another toy and now you want to play with it...it's MINE. You get the picture. Sometimes the Rule of Mine is applied to my stuff. Kameron will decide he'd like to play with my laptop. Or drive the car. Or flatiron his hair. Under the New Rules, he has this authority. See how it works? They ought to work for the Government. Kind of make it up as you go along.

This sets us up for countless conflicts throughout any given day. Because they are loyal soldiers, they wake at oh-dark-thirty most mornings. Before my alarm goes off, the battles have begun.
I'm not a lover of conflict, but since there is no second in command most days, I have two choices: rise and prepare for war, or pull the covers back over my head. Guess which one I prefer? I'll give you a hint, I have a wonderful, fluffy, down comforter. My friend says I love my bed so much because I spend so little time in it...but I digress.

They also like to take turns being the Food Nazi. For example, say it's breakfast time. We have a house rule (mine) that we eat with good manners. You know, chew with your mouth closed, don't talk with a full mouth, use your napkin, no spitting, drink your own milk, don't put your feet up on the dining room table. That sort of thing.

When one of them is acting as a Food Nazi, he or she invokes this rule: all the good manner rules apply to everyone but me, and I must tell mom at the top of my voice with a full mouth every time anyone else is committing a good manner rule infraction. And, when he or she tries to turn it back on me, I am "not your friend anymore!"

BTW, that is the major punishment doled out by the rebels. "I'm not your friend anymore!" is the cry d'jour. In fact, I found myself uttering it only yesterday. After refereeing I don't remember how many fights, I finally told one of them (can't remember which, it's all a blur) "Well, I'M NOT YOUR FRIEND ANYMORE EITHER!" This was a sign to me that I had truly lost most, if not all, control over my little domain.

That, and the fact that when my college aged Kelsey came home for a quick visit, I locked myself in my room with my TV at full blast and the covers over my head. I came out when they all went to bed.

See, I think the balance of power has definitely shifted and the inmates have won. In the immortal words of Alexander (of Alexander and the Terrible, Horrible, No Good Very Bad Day): I think I'll go to Australia.

Oh, they have kids there, too. Sigh. Is there no escape?

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.