Monday, March 30, 2009
Okay, so this week my elementary kids and high schooler are home. It's just crazy how many days they are out of school. How does any normal, work-in-an-office parent do it? GAH!
I love my kids, but boy, this is too much togetherness.
One of the big challenges is Kameron's lack of mobility. We don't have a wheelchair van, so that means lifting him a lot and hauling his wheelchair in and out of the car. It wasn't such a big deal when he was younger, but now he's nine and weighs more. His chair is bigger, too. He also doesn't help much with the transfers. All this tends to make me think several times before attempting a trip out, even to the store. I'm also realizing that all the "handicapped accessible" places aren't very. Accessible, I mean. Lots of unexpected stairs.
Now, this isn't something a typical family deals with. My previous parenting experience was fairly straightforward. But, since Kam's still not walking (he keeps trying!), I guess I better face the reality that he'll be in his chair for awhile, if not for his lifetime (toungue biting here - that's DEFEAT, isn't it??).
Crazy as it seems, I never allowed for the possibility that he wouldn't walk. Somewhere in my brain was the idea that God + me = overcoming any and all obstacles. Guess I should have read my Bible a little closer. Sometimes bad things don't get taken care of this side of heaven. Kameron very likely will remain non-ambulatory (big words for not walking). Really, I need to be way more grateful that he's even alive.
All the really big health challenges he has had in his nine short years. Born very premature - at 25 weeks - drug exposed, lungs barely developed, ventilator dependent, fed with a tube in his tummy, for his first three years. We get him over all that, then massive brain junk starts. Too weird and complicated to go into in depth, but basically, he's had over thirty procedures trying to stop large fistulas (nests of arteries) in his head that don't belong there and posed a real risk of stroke and hemorrage...all that culminated in brain surgery last August 1st. Thirty-two stiches in his little cranium.
Ugh AND gah.
He's doing so much better, now. He's trying to learn math, and writing, and reading...loves the Bible, music, and me. Well, he loves all of us, except when someone says no. But that's another story.
So, actually, I have got to be way more grateful for his little life and less focused on the difficulties. Perhaps if I pray about these challenges...what a concept: stress less and pray more!
Gotta go, got Someone to talk to.
Saturday, March 28, 2009
There are miles of blooming tulips planted in groups by color. Each section is about 1/4 mile wide and maybe 1/2 mile long. All of these fields are down in the Skagit Valley, which lies between the Cascade Mountains on the east - still snow capped - and the Puget Sound on the west. There are red barns here and there, and old farm houses that have been restored (or kept in really great shape). And the Skagit River wanders through the whole valley.
I don't have words to do it justice.
The Festival was scheduled to start April 1st and run through the 30th. Our retreat was scheduled for the weekend of the 25th, and it was pretty likely that the tulips would be past their prime by then.
But God arranged the weather this year to so that it was unseasonably cold. In fact, we had snow a week ago. Hey, it doesn't snow up here near sea level very often! Especially in April. So I held out hope that the tulips might be late in blooming.
We headed up to retreat, and honestly, no one but me cared about the tulips. This is my thing. I talk it up big time, but people kind of glaze over when I bring it up. I think they take that beauty for granted. I lived in the high desert for twelve years. Tulips don't grow out there. Tumbleweed does - I kid you not.
Okay, so up to Stanwood we go, the retreat is awesome, God's Spirit is speaking, lives are changing, I am praising Him... and wondering how the tulips are.
My friend didn't really want to go. But I can be pretty persuasive. She relented and on our way home Sunday we drove the 15 extra miles to see them.
It was so worth it.
Even Steph agreed once we got there. We didn't stay long, just drove up to one spot and pulled over to take some pictures and bask in God's glory.
As we headed back to the car parked in the mud by the side of the road, I saw something I would call a sacred delight. Two red tulips far far from their brothers and sisters were poking through the mud. Seriously, these two were about twenty feet from the fields, and the mud they were in was where thousands of cars had parked over the past four weeks of the festival.
It made me think of Hind's Feet on High Places. There's a flower in there that Much Afraid meets that is growing up through the rocks where nothing else is growing, and its name is Acceptance With Joy. I want to be that flower, that little red tulip growing in the mud of life. Blooming where I'm planted, even if it's far from the field where everyone else is, and isn't a very pretty place.
The ugliness of the mud makes the beauty of the tulip stand out that much more.
Wednesday, March 25, 2009
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.
Sunday, March 22, 2009
1 Peter 3:7 ESV: Likewise, husbands, live with your wives in an understanding way, showing honor to the woman as the weaker vessel, since they are heirs with you of the grace of life, so that your prayers may not be hindered.
From this, Pastor Mark spoke to the men (my 22 year old engaged son, too) about being husbands, about understanding their wives (and daughters), what showing honor toward us looks like, and how women are weaker vessels, needing gentle handling - he said women are goblets and men are thermoses. Cute illustration.
And he spoke (pretty heatedly) about what God thinks of men who fail to do these things. About wimpy men and overly MANLY men. He spoke of how frustrated he gets when men neglect their responsibilities as men. He spoke of it passionately. And loudly. I've never heard him that intense before. It was great, actually.
The funny thing is, this sermon - written for the men - had a profoundly moving and unexpected affect on me. I felt protected, important. For the first time...ever?
I am the divorced single mother of two biological, four adopted, and two foster children. I am also adopted myself, and my adoptive parents divorced when I was eleven. Dad experimented with other women over the years of their marriage, and finally found a family he liked better.
Along the way I've experienced what seems to be the standard amount of abuse from an older brother, strangers, men who weren't strangers, and my husband. In short, I don't think I've ever felt safe or cherished. Never very important. No one gave me away at my disastrous wedding, no daddy checked into who I was dating in my equally disastrous teens. He doesn't really keep track of me now. My mom was too busy trying to support us to pay attention either. You can imagine the type of guys I ended up with. Briefly.
Long involved story short, Christ got my attention in my late twenties and my life changed considerably. But despite all the healing He's brought (and there's been much), there are still some pretty deep pains that I've never allowed Him to have. Maybe I didn't know they were there. Thus Lisa, the Therapist (see earlier posts). Everyone knows that these injuries fester if not dealt with - even I am not strong enough or "spiritual" enough to avoid the consequences forever. But I've sure spent a lot of energy and time trying to.
Back to Sunday. As Pastor Mark spoke about what men should be, about what God created dads and brothers and husbands to be, my spirit responded immediately and I lost it. I didn't turn into a blubbering idiot, but I sure needed a tissue box.
The message uncovered - gently - the gaping wounds in my heart that were there from the lack of a daddy. The boo-boos he never kissed away. The tucking ins that never happened. The "I love you"s and being daddy's little princess. Maybe it would have been easier if I never knew dad. Having him around but never noticing me...ouch. Then he left and married a woman with three beautiful daughters, my step-sisters. I kid you not. Straight out of a fairy tale or something.
Anyway, the point is that Pastor Mark's message about how God expects men to be lifted a weight I've carried unconsciously all my life. It isn't my fault that stuff happened. It's very very sad, but not my fault. My father was supposed to be my daddy and he wasn't. My dad, my brother, my ex-husband - all these guys will have to stand before God one day (if they don't repent) and answer to Him because they hurt His little girl.
Of course, I bear responsibility for choices I made out of that pain, and there is bitter unforgiveness I need to address. But Jesus spoke to me Sunday at a real level. He told me that I am His baby girl, His little princess, and I deserve to be treated that way.
Powerful stuff, God's Word in the right hands.
BTW, here is the link to the message. I highly recommend it.
Saturday, March 21, 2009
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?
Tuesday, March 17, 2009
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.
Sunday, March 15, 2009
In theory, that makes a lot of sense. I mean, if you are choking and gasping and about to pass out, it's probably going to be difficult to take care of anyone else effectively - or at all.
But in practice...
I've been seeing this awesome counselor. Now, for years and years I've been one of those "Oh, you're seeing a Therapist?" kind of girls. Like wow, good for you (I'm perfectly fine, but hey, great, happy for you). Seriously. Kind of annoyingly "strong" but honestly understanding how other people could need therapy. I mean, it's a really nasty world out there. Even as a Christian, those slings and arrows can just wear you down. But every now and then, the inner pain and damage I have walled away in my deepest heart starts to seep through the cracks, and the fear of facing it in order to maybe, just maybe get it fixed has had me running for the hills (or a few glasses of wine!).
Lisa says this is dis-integration. An apt word, really. You have these dis-integrated, segregated chunks of your personality that are so wounded you try to keep them hidden and "safe" because it feels like if you allow anyone access to them you will, quite literally, die.
Thankfully, God brought Lisa into my life at this time, because I honestly can't shove the pain back any longer. Whatever is lurking behind that crumbly wall around my heart is winning. I can't keep running around it trying to hold it together any more.
For the sake of my children, and maybe for myself, it's finally time to look at these fears and feelings and hope that, by God's grace, mercy, and love, I won't be consumed by them. No clue what it all involves. Not especially thrilled by the prospect - in fact it scares the hell out of me - but, hopefully I'm finally convinced that it is not only necessary, but essential to the survival of myself and those around me.
The masks have dropped, and I'm reaching for mine. I'll try to keep everyone posted on what comes next.
Saturday, March 14, 2009
addresses. Well, and when you are edging up the hill into mid-middle age. I'll leave the definition of that up to your imagination.
What to blog about?
We have a new (ish) family member, Andrew. He's only four and quite the little man. Lots of issues-he was in seven placements before he turned four-and we've had quite a road trying to help him understand what kind of behaviors are okay: saying please, using "indoor" voices, etc., and what behaviors aren't okay: hitting, throwing toys, spitting, and some insanely bad language.
He's still getting used to a mom that cooks (most of the time), and reads to him at bedtime.
After all these years you would think I'd be used to how damaged these kids are, but it still blows me away. He used to think that every time he went to preschool, he'd be going back to a different house. Every move he had prior to our house was a surprise. Go to the babysitter in the morning, have a new "mom" in the evening. Wow. Why do we wonder at the high juvenile crime rates? Take a small guy like this and twist him up - what do we expect?
One of my biggest prayers is that every stable, sane, responsible adult would choose to be a foster parent. It doesn't take some sort of super person, or "special" person (I get really tired of people telling me how special I am), it does take someone willing to open their home and their heart to ONE damaged child. Just one. They are small. They don't take up much space. They need you a lot.
Think about it.