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

Monday, January 31, 2011

Hooky Part Two

First, I have to say "WOW!" and "THANK YOU!" because yesterday's post about church and mental health generated a whole lot of discussion, positive affirmations, encouragement, love and support.  All of you are amazing. 

Second, after reading everyone's comments I discovered that I inadvertently created a poor picture of our current church. I must clarify. When we started attending our church three years ago this February, there was special needs sunday school support. Things change, it's the natural ebb and flow of life and that is no longer available.

Sure, one of my readers mentioned starting it on my own. I agree, it's something I've thought about, especially since in the last six months, we've not been able to attend church as a family but a handful of times due in large part to the new Sunday school format for Sissy and AB's age group, a format that does not work for them, a format that I've already talked to the children's church director about only to learn he has no answers for our situation. However, the idea of me starting a SpEd Sunday school class still skirts the realities of parenting challenged kids: my daily life is challenged, stressful, unpredictable, filled with violence, rage, crisis and daily therapies. The last thing I want to add to my crisis-filled life is one more responsibility and one more time commitment (because let's face it, leading a Sunday school class is NEVER just a one hour commitment on one Sunday morning).

Having been an educator, I've also tossed around the idea of contacting the clergy and suggesting that we have a panel/forum for leaders in the church for the expressed purpose of educating people about how to understand, support, encourage and integrate families with challenges into the church infrastructure. Another excellent idea but it has become one of those ideas that is just thought about and never acted upon because again, my daily life is challenged, stressful, unpredictable, filled with violence, rage, crisis and daily therapies. The last thing I want to add to my crisis-filled life is one more responsibility and one more time commitment. Thus it becomes a self-perpetuating issue.

That said, I do want to firmly and gratefully reiterate that our church HAS helped us immensely in many different ways.

So what's my beef then?

My issue isn't so much this one congregation, it's the overall misunderstanding of persons within a congregation or within the Christian community at large about challenged people and their families. It's that we don't have a voice within the religious community. It's that our voice is squelched too easily with the ridiculous religious rhetoric. It's that we're forgotten when we don't show up for weeks on end for the simple fact that humans move on, out of sight, out of mind. It's that getting to Wednesday night service is IMPOSSIBLE. It's that getting to just one our of Sunday service often takes an act of congress. It's that attempting to get to all the miscellaneous extracurricular church functions often make our challenged kids WORSE so those functions are often regrettably avoided. It's that churches in general are loud, busy places. It's that seeing so many families with unchallenged children worshiping God stings a little Why God? Why us, why OUR kids? Why this life with no reprieve?

The biggest issue:
Challenged people never stop being challenged and their families never stop struggling to help them in those challenges.

That's the shoe-dropper, right there. I'm guilty of it too so I'm just going to raise my hand and say "yep. been there, done that, didn't realize it at the time but dang, if I haven't at least learned empathy in all of this"

What I'm saying is, church people LIKE to help. It's a rare thing to find someone that attends ANY congregation in ANY denomination that isn't on the outset, a giving person looking for an opportunity to serve. But church people like to help in the ways that THEY want to help. (Again, I'm guilty of this too, I'm not preaching, I'm saying like it is)

Spiritual gift survey, anyone? Right? In what ways can I serve the community and church body? The spiritual gift survey says I'm good at mercy. I should go to hospitals when people are ill. Hospitals make me squeamish. How about I just make a quilt to send to the hospital. Yeah, that's a nice thing to do. I'll do that.

You know what I'm saying. I'm not being rude or snarky, this is what humans do. This is the dialogue we have in our heads with our selves. Come on, don't tell me it's not true, you know it is.

Now let me say this, it's NOT a bad thing to send a quilt to the hospital! Linus Project is an AMAZING project. DO IT! But in the grand scheme of things, how does a quilt help a sick person? What does that sick person REALLY need? Medicine? Prayer? A quilt?

Yes. But they need comfort, encouragement, support. They also need practical stuff. Hot meals for the family still at home. Money to pay unpaid bills because they're in a hospital bed and not at work. Child care. Transport to and from follow up doctor visits. Assistance with in-home care or hospice. Prayer. Time. Fellowship. Camaraderie.

Yes. Most churches can do this and do it with FLAIR! I believe our church does this with flair times ten.

But illnesses heal or people pass away. Then the help is no longer needed and the church people move on to make quilts and hot meals for the next family. Great. Excellent. Fantastic! WAY TO GO! If you or your church do this, you are ON IT!

Trouble is, mental health, developmental delays, impaired persons NEVER GET BETTER. The challenges NEVER GO AWAY. Never. By nature of the illness, the good graces are expired. It's humanness, not a lack of faith or christian belief to get to the point of helping the perpetually needy when you say Ugh. they STILL need help? Wow. This is taxing. This is too much. I have to move on. I need to see immediate benefit from my act of service Again, not dissing anyone, just telling it how it is. So by the nature of living a life encumbered by impairments, you fade into the background time and again, you get forgotten, overlooked, maybe even make people a little annoyed because you're still there, still needy, still, still, STILL...

My ideal help from church isn't a reality, which I accept, but this is what it looks like:
#1 two frozen prepared meals in my freezer at all times because I never know when Sissy is going to spend an entire evening in crisis and prevent me from making a hot meal for my family
#2 someone to come and help me deep clean my home one saturday a month, indefinitely. and if that person wanted to stick around and help me to prep cooking for the week, so much the better because I never know when sissy is going to spend an entire evening in crisis
#3 a team of people that I can call on in crisis that are skilled to assist AB and provide general childcare for WG when I have to sit in the ER with Sissy for 10 hours. a maybe someone to come sit with me on occassion
#4 someone to pop in once a week to process four loads of laundry
#5 a crew to come out once every other month to help The Dad keep up the house and yard work. It's not because he can't do it, it's because we never know when Sissy is going to be in crisis
#6 the occasional financial assistance without having to ask - we just never stop being broke. never.
#7 a team of people that I can call upon to help with homework (they'd have to skilled and patient to help AB and Sissy) or picking up kids when it's one of those long doctor days
#8 people that can help us shadow Sissy and AB at these extracurricular church activities so The Dad and I can have fun too. most of the time we spend our energy trying to prevent meltdowns instead of letting go and having a good time ourselves.
#9 having someone else step up to the plate to run a special needs Sunday school class that I can HELP with, not facilitate

OH, it's all pie in the sky. Because even if some of those things could be provided, it goes back to the original theme, I need that kind of help indefinitely. I'm guilty of it too, that kind of long term help simply doesn't exist. By default of our family's needs, we expire the limits of patience, understanding and compassion.

I'll end with this thought:
Hil, if you're reading, this is for you. Thanks for being awesome, patient, understanding you. Really. THANK YOU

IF I make it to the S!arbucks for the Daisy leader meeting and you ask me how I am, I'm not going to know what to say. Because how am I? I don't know. I've just left the house after deescalating Sissy from a three hour rage fest about alphabetizing her spelling homework. We thought about calling 911 but opted not to. I thought about calling to say I wasn't coming to the meeting but didn't want to do that either because I like being a Daisy mom and I like spending time with the other leaders. But The Dad was awesome and saw how stressed I was so he sent me out anyway with a kiss and an "I love you, I've got this" and I left WG in her bed screaming, "but Mommy, WHEN are you coming home?" and I shouted back to The Dad as I closed the door behind me, "Just let WG sleep in our bed, I'll move her when I get back!" And so I drove to Starbucks crying the whole three miles because damn, it was another rough night and it just never ends and I REALLY want to be a Daisy mom because I love WG and poor AB who is skippy slappy flippy flappy stressed and UGH UGH UGH, Sissy. GOD in heaven, what do I do with Sissy?! and so you ask me how I am and I'm shaky and tired and want to cry but I also want a cup of coffee and to talk about how the girls are going to earn the next petal so I don't know. Is that OK? I don't know how I am. I don't even know how to answer that question. I just don't know. How I am seems so indelibly tied into how Sissy is and how AB is and how The Dad is and how WG is that I forget that the question is just simply, 'how are YOU?" So I mutter "fine" which seems so stupid because clearly I'm not but what SHOULD I say? It's a Daisy troop meeting, not a therapy session.

And this is my EVERY day. And how are churches supposed to support this? They can't. They just can't. So they say "God will see you through" and "God won't give you more than you can handle" because that's all they've got in the end.

Sunday, January 30, 2011

Hooky

I really don't feel well, so that's my story and I'm sticking to it but the down-to-earth, nitty-gritty answer is I don't want to go to church.

Yes, in the past few months I've had a few dust-ups with folks at church that have not understood our situation and have said things that left me feeling more victimized than before.  No one does these things on purpose but it does stem from a lack of understanding, forethought and to some degree, a lack of compassion (GASP! I know, right?  Christians that aren't compassionate.  Go figure). 

The bottom line is, there isn't a whole lot of discussion by clergy about mental health illness and what scripture and God have to say about it. Occasionally discussing the scripture in which the mentally ill man was delivered of his affliction by exorcism, his legion of demons being cast into pigs that ran off a cliff is the only exception. But for the uninformed parishioners, this perpetuates the belief that mental illness is religiously help able and that the afflicted can prevent their illness by not allowing themselves to be possessed. 

There also seems to be very little education for clergy about mental illness, particularly in nondenominational congregations. Thus the underlings in a church congregation like deacons, elders, superintendents, etc., are also uninformed of the devastating nature of such illnesses on a family and the staggering toll it has on the caregivers. All of this leaves sunday school teachers who are volunteers, woefully unprepared.

Let me restate succinctly.

There is NO education for churches about how to manage delayed, mentally ill or dually diagnosed people within a congregation.


NONE.

And yet, the church is the most common source of comfort for individuals whose lives are altered by mental illness, developmental delay and other such naturally occurring afflictions of the body and mind.  Even more so for the adoptive families that are lead to adopt by "God" only to find their lives turned upside down by their children.  Imagine then how hard it is to voice to church family that some of your child's afflictions stem from the consequences of trauma they endured by the wayward first parents that abused them, these would be afflictions that ARE preventable.  Pour some acid in the mix when you acknowledge that these adoptive parents were ENCOURAGED, PRAYED FOR, SUPPORTED and PRAISED initially by their church families for taking on such a God-ordained task of parenting "orphaned" children only to later find that this same church family falls strangely silent and invisible when the rubber meets the road after the adoptions are finalized.  The occasional "God won't give you more than you can handle" nauseating rhetoric is all they are equipped to offer because it is the only truth they are taught from the pulpit: be a good person and God will bless you.  Be a bad person and you'll have a trial to learn from.  Fill the coffers and you'll be blessed financially.  Pray daily and read the Bible and God will give you the strength to see you through.  


You can't really blame churches then for their ignorance but man,  it sucks giant, rancid ostrich eggs!

I was in a position of leadership at a church for many years. In all the "training" classes I sat through, there was not one lesson on how to assist, comfort or address persons with disabilities or their families. In fact, I'd go so far as to say that the general consensus was that such persons fell into hardships by their own devices.  After all, there are social agencies that can help them.

BWAHAHAHAHA!!!!!

Oh, the irony of life ...

Last week I had the occasion to attend a craft/quilter group at a local baptist church. This group of women make crafts, projects and other items as a way to comfort, encourage or edify other individuals on hard times both in the church and in the community. As the ladies gabbed, one woman mentioned how ill-equipped she was to manage an autistic toddler in the nursery the previous week. Her words reiterate my concerns, "I've done toddler nursery for 11 years. I love doing it but I'm not prepared to manage an autistic child. I feel really bad for his mom, I do, but that little boy was a handful! I don't know how to handle that. His mother needs to be able to attend church and this little boy should be able to hear the word of God but I'm just not prepared for that."

I could hear the frustration in her voice and my own frustration rising within me. It's harsh to hear the words of someone whose life has been unaffected by impairments when my life revolves around it. It's hard to know that her concerns are as valid as mine but the fact remains, churches are not prepared for the impaired person and impaired persons and their families have the right to feel welcome and comforted by attending church.

Therefore I take the path of least resistance and claim feeling ill (really, I DON'T feel the best, honest) so I don't have to attend church and can avoid the issue entirely. Yet it nags me because I was raised to believe in Christ and I personally accept the Apostle's Creed. So I dig a little deeper and come up with this second truth about church:

How does God fit into the picture when I have served Him according to the scriptures with my whole heart, striving to abide by the ten commandments and seeking to do God's will and still, I suffer so much?

The fact is, church has sold us a bill of goods. The quote at the top of this blog says the truth, the truth that church doesn't preach, especially the high-faluttin'-lovey-dovey-God-will-bless-you-bogus-american-church philosophy preached with veracity for the last twenty years. if you love God and obey his commands He will bless you! then they pull into the church parking lots in $80,000 SUVs wearing $300 designer shoes saying, "look how God has blessed me!" And worse yet, when your life hits the dirt it is assumed you have sinned or the one that really chaps my butt, that "God is teaching you through this trial." and anyway, God won't give you more than you can handle.

*puking*

Oh. How this crap ticks me off. The truth is, the only freedom we are promised in scripture is freedom from the wages of sin and death and that freedom is given only to those who choose Christ and live by his holy commands accepting the truth that all have sinned and fallen short of the glory of God and that the blood of Christ is the only redemption.

Why does one person have a lovely life while another struggles all the days of his life? There is no answer on earth and I doubt God will see the need to supply an answer when we are finally in his midst.

So hear this.
I'm a christian.

I love God.

I do not understand his ways.

I suffer daily.

My family suffers daily.

We have done nothing to deserve this suffering beyond being human and being born into a sinful world.

We are not paying a consequence.

We are not learning something.

This is not a trial that God is going to bring us through, it's our life. Every day.

We are not handling it.

My children are not impaired because it is a consequence for a sin.  They're impaired because that's life, that's the natural decay of human DNA.

My family has a voice that can not be squelched by ridiculous religious rhetoric.

God doesn't think I'm so much better and stronger than others that they get to have a pretty life and I get to struggle because if that's true, then the people with pretty lives are pathetic, pitiful, wretches. How do you like THEM apples?

And furthermore, suffering is relative. What do American Christians have to say about the intense, horrendous suffering around the WORLD?!? Oh yeah, probably that those countries deserve it for worshiping false gods.

wait.
wasn't Christ's blood for EVERYONE?

So why do I play hooky from church after 36 years of Christian living?

Because it's bunk. The American Christian church is a pedagogical human ideal that leaves no room for the have-not, down-and-out, pitiful wretches for whom Christ descended to earth to save.

Friday, January 28, 2011

Morphology

Ten years of parenting a RAD has morphed me.

Ten years of parenting an ASD son with a genetic issue has morphed me too.

I guess my first thought might be:

Hooray! I'm finally a super hero - I can morph!


Except maybe what I've morphed into doesn't jive with other humans, you know, the non-supers. So my second thought, a little less enthusiastic this time is:
hooray. I'm not normal.


Remember in the 80s how we thought being normal would be HORRIBLE? yeah. that was dumb.

Over time and repetitive actions by your SpEd kids you're entirely convinced that you've not only morphed, you can NEVER.GO.BACK. So the third thought a little irritated and sarcastically this time is:
 Great. I'm stuck as a blue footed booby. forever. LOVE that.


But after ten years the thoughts go like this:
*looking in the mirror* OMG. Who the BLEEP is that?!
*realizing it's your reflection* Dayum. When the BLEEP did I become this woman?!?


and then you hear your RADish screaming for God knows what reason she has to be screaming, again, for the fifth school morning in a row so you look at your reflection and attempt to pluck the hairs that have morphed your original two neatly shaped brows into an enormous, hairy caterpillar unibrow and say,


Ow. That hurts.


Only you're not talking about the plucking. you're talking about the reality that this is your life. Every day. This reality you now live is what morphed you into that THING staring back at you in the mirror.



then WHAP, you get smacked on the butt by your ASD son who is hyperspazz-stimming at the mo.

fun times.

Thursday, January 27, 2011

update

tuesday night = bad. bad, bad, bad
Sissy. Ugh.
I can't do this anymore with her. Really. I can't.

AB is skippy, slappy, flippy, flappy, OMG stimming like a wild man. not sure why. Just skippy, slappy, flippy, flappy.

*groan*

WG is wrapping up gifted testing but was really moody this morning.

yay. love being screamed at. every morning. again.

Tuesday, January 25, 2011

Oh no, the phone is ringing before 8 am!

It's never good if the phone rings before 8 am. I heard it ring, that is to say, my cell phone ring tone went off. (remember the days when a phone actually RANG? Or the time you actually had to DIAL a number - still love that clicky-scratchy sound the old rotary phone dials make ...) And the first thought in my head was crap. that's not good. Don't answer, don't answer!

It wasn't a reminder for a medication, it wasn't an alarm for 20 minutes for required reading and it wasn't a five minute timer for a time out. Nope. This was a genuine phone call at 7:40, my planned departure time to leave the house to get Sissy to the pdoc. My mind willing me to resist the urge to mash the talk button, my reflex arc betrayed me and the next thing I knew my ear was listening to a voice telling me what I perceive as "bad news."

Sissy and I had set our alarms for an extra 30 minutes this morning so we could get up, do morning routines and leave on time. This took pre-planning, lots of verbal prompting (because Sissy and AB do NOT do change well), coercion, bribing and nagging. I intended to do like I did last week with AB which was keep all of Sissy's appointments, her annual physical was scheduled for 10:30, in one day to minimize tardies and absences. That was my I'm-the-best-mom-in-the-whole-world stellar plan.

Except the dang phone rang at 7:40. The pdoc's office was calling to say he wasn't coming in.

*sound of needle scratching on vinyl record*

I made a minimal protest with the receptionist, got out the planner to reschedule and hung up. crap. if we keep the 10:30 appointment, it will mean Sissy misses TWO school days in two weeks. With our special kids, you have to keep these absences as low as possible because they invariably get sicker more often in addition to having so many appointments. Sissy already has several late days on her record this year for rages and panic attacks. so... do I just send her to school?

Quick consult with The Dad. He agreed.

And that put the scream machine in motion.

For the second morning in a row.

We finally talked Sissy out of her tree (really, if I made a political cartoon of her antics, she'd be a baboon swinging from the top of some crazily insane tree, screeching and hollering and pounding her chest and making a royal hoopla for the WHOLE JUNGLE to hear.) And the jungle DID hear it. At least the jungle that lives under this roof.

AB was annoyed and then WG figured out she wouldn't be riding to school in The Dad's truck so she started in and then The Dad and I were trying to negotiate over the cacophony about the best plan for getting all THREE of them to school with minimal screaming which admittedly, sounded a little like screaming too.

Fun times.

Somehow, like clowns in a VW bug, The Dad herded all three of them into the little two door pickup, backpacks and all and drove them off to school with only AB still making protests. Somehow all three of them managed to leave here with all homework, all books, their snacks and their dollars for the fundraiser this morning. Somehow. I'm not sure how and I no longer think i can claim it as my best-mom-in-the-whole-world status. I think it was by pure luck, strong will and The Dad's determination to get the screaming jungle to move to another location, which in this case is a mile down the road and in a brick building disguised as a place of education.

Sissy has two tests.

*snicker*

Which is likely the cause for her wild rumpus in the first place.

Oh, if only the pdoc knew the mayhem that ensued after his receptionist's phone call before 8 am. Nothing good EVER comes from those calls. Nothing.

Sunday, January 23, 2011

Not Fair

Yesterday Sissy managed fairly well after a very long, difficult week with her, due in large part to her "payback" for respite.

Which brings me to the question again, is respite worth it? After this past week, I'd say no.

Today, though, The Dad and I took one look at her when she woke and said to each other, "crap." because it was one of those times when you can just tell that her mind is unraveling again. Red flags like clothing issues, forgetfulness (both deliberate and absentmindedness), incessant picking at old sores, lingering, ...

and now she's screaming...

*sigh*

apparently I shouldn't suggest that she should take some quiet time to herself. Apparently such a suggestion means we should hear her scream for the next two hours about all the things we've done wrong and all the things she hasn't done.

"I didn't do anything" has just escaped her lips at the top of her lungs 30 x already since I've typed this.

Truth? I'm unraveling too. Which doesn't help matters.

It also doesn't help that once again, at a school meeting for Sissy (that I didn't call, mind you - her THERAPISTS called this meeting) I got the nth degree from the principal. According to her, the staff simply can't understand why they never see the behaviors I report and that their only conclusion is that it must be the way I'm parenting.

Of course, she was lying. Sissy had a rage just that morning.

Still, I got dragged through the meat grinder ... again.

And the therapists that called the meeting, let her do it. They didn't defend me. Not one peep.

Which caused me to consult a particular individual that I knew would have an honest, off the record conversation. "Are there rumblings of reporting me to DFACS?"

"Not that I know of," she said. "But did they tell you about what happened?"

Which is how I found out that Sissy raged THAT MORNING.

Uh. Hello? I NEED that to be reported! Currently the reason Sissy's CAFAS score is too low for RTC placement is because the school never reports behavior issues!

AUGHAUGHAUGHAUGHAUGHAUGHAUGHAUGHAUGH

I CAN.NOT. be under the gun again.
It is destroying me.

Not only do I have a child that hates me, rages at me, gives me grief at every turn, ALL.DAY.LONG and then NEVER shows those behaviors for others, I have to answer to "professionals" ALL.DAY.LONG about what I'm not doing or am doing or what the BLEEP ever should be done for this child.

This child that doesn't care no matter what.

This child whose illness I can't parent, that NO human should be expected to parent without ASSISTANCE.

ASSISTANCE - not retribution, anger, disdain, disgust, malice, etc. from the professionals that are trained to HELP me raise this child.

It just doesn't make sense and it's not fair.
raise this impaired child that will never heal, raise her correctly without fail, without breaks, 24/7, do it as all the professionals command you to and when you do it wrong for even a smidgen of a second they will crucify you, threaten you, harbor ill feelings about you, discuss "your case" with all the other professionals and point the finger at your presumed negligence but... BUT won't take up the gauntlet themselves

WHAT the F!CK kind of system is THAT?

So I say, "uh, yeah. Thing is? I CAN'T parent this child. I have told ya'll that for SIX MONTHS now. I have told you it is RUINING my mental and physical health. I've told you over and over. CRIED while you've been IN MY HOUSE listening to Sissy rage. I've made it abundantly clear that my entire FAMILY suffers, that not ONE of us has quality of life yet she stays here. and you continue to berate ME for MY job ill done."

if I was in a CAREER? I'd have quit.

Can't quit a child. That's abuse.
But what if the child is abusing ME?!
What if the PROFESSIONALS that are supposed to be assisting the child and my family are expecting the impossible?
What if the constant barrage of questions about my ineptitude is ABUSIVE, UNJUST and UNFAIR? And the kick in the pants is i've TOLD them her needs supercede my ability - I've ADMITTED I'm not adequate to parent her!!!!

What recourse do I have?

Bottom line: no one is safe guarding MY a$$.

The system sets up parents for failure.

and no one cares.

If I put MYSELF in the hospital, telling people raising my challenged daughter has brought me to the brink, it'll still be "my case" and it will have no bearing on Sissy's.

*she's quiet now. probably fell asleep - which she needed, which I KNEW she needed but I knew she'd rage her head off if I actually said those words to her. Joke's on me. She raged her head off anyway. Joke's still on me - the professionals would probably tell me to handle it differently (as if there's a different way to handle it) but would get the same results from her. Joke's on me AGAIN because none of them will say, "gosh, mom. Sorry we second-guessed you. You were right." Not one of them would even remember the event long enough to use it as armor to defend me later. They'd tell me "mom, you can't be an island to yourself - you need support and encouragement" but ... HA. they don't. ever*

Yeah.
Sissy might scream all day long about how "unfair" her life is.
Boy, could I tell her a story about injustice.

Wednesday, January 19, 2011

F-G!

Today was take-AB-to-appointments day. Next Tuesday is Sissy's day. I've discovered that it's just easier to get a bunch done all in one day. It's a long, stressful day, but it can be fun too.

All teacher-ish of me, I made sure AB had the essential school work he would be missing. We took the girls to school and then went straight home. He asked to have one of his birthday snick.ers bars and I astutely said, "sure ... after you get all this school work done!" He was finished in ONE HOUR!

The candy bar was gone in one bite. lol

Then it was, "mom can we build my lego game now?" He had gotten a L.egos H.ogwarts game for his birthday. You assemble it and then you play! Fun.


a very proud and happy AB working on his project
seriously, he looks so stoic but he was GIDDY!



the box of pieces yet to be assembled



the nearly finished product


The whole time, "mom when are we going? are we going to be late? what time is it, mom? the appointment I mean. mom."

Of course I gave him a precise departure time, ETA and a brief synopsis of the events to occur. Of course, he had to hear those details 10 times.

We finished the project early and he said, "wait. what about lunch?" This from my voracious son that of late, can not be kept full.

"if we hurry and get in the van RIGHT.NOW we'll have time for Mc.Donald's" I'd gotten a little check the day before for being a Melaleuca[1] representative so it paid for lunch, a plan I'd had yesterday when I saw it in the mail. But you can't tell AB something more than 24 hours in advance because what if those plans change? and then BLAMMO, you've got meltdown hell.

"YAY!" he hopped. Skipping off, he was in the van. Correction. Pacing outside the van asking over and over and over as he rocked, "is it locked? is it locked? is it locked?" and of course, I was still getting on my shoes IN.THE.HOUSE. and had no idea he was waiting until he asked the empty driveway 16 times already so that he was HOLLERING at me by the time half of my left hand was visible as I walked through the front door. He was just trying not to set off the van alarm [2].

At "the brace place" as he calls it, we made some minor adjustments to his AFOs for the second time this fitting. This is his sixth pair and the first time we've had this much trouble. That's a pretty good track record for this company but still, I don't like my son to have blistered feet.

Some days we wait F.O.R.E.V.E.R. at the brace place so we came prepared with my backpack full of things to do. When we walked in, it was empty. SCORE! We were done in 30 minutes with four new AFO socks in hand. (The error with the AFOs had caused all of the socks to get holes. NOT COOL as they cost $10 a pair. OYE!)

Skip. Skip. Skip.
Question.Question.Question.
Sigh.Sigh.Sigh.
Finally, "AB. i don't know. Get in the van."
"YAY!" and he was skipping, then pacing and "is it locked, is it locked, is it locked" then another "YAY!" when I mashed the key fob and the flashing lights indicated it was unlocked which was followed by "wherearewegoingnowmom?" before I was even 10 feet to the van so by the time I opened the driver side door he was hollering at me for not answering his question immediately because DUH. He had me all to himself, why wasn't I listening? 10 feet and a closed van door between us notwithstanding for crying out loud!

geez. you'd think I'd learn by now.

I didn't tell him where we were going. We had time to kill before the geneticist. So I took him to the riverwalk (which in our city doubles as the levee).  But we parked outside an old church that has really old gravestones.  AB found one with a death year of 1755.  AB likes ghosts and such.  So there was ALOT of questions about the dead people and a lot of me sighing and saying, "i don't know, AB" and LOTS of me trying not to let him see me giggling at his questions and when we went to leave?  We waved good bye and wished all the dead people well but not before ...

AB asked the dead people if they wanted his granola bar!


Which isn't the funny part. The funny part was he answered his own question by saying out loud, "oh yeah, right. They're dead a long time. They might not know what a granola bar is." so he called out to them, "It's like a candy bar only it's not!"

I'm not kidding. REALLY hard to not roll on the ground ON.TOP.OF.GRAVES. laughing my a$$ off. There's a new acronym: ROTOGLMAO

Riverwalk photo montage
yeah, only lucky for you, you get the silent version. I'm not kidding, this boy didn't stop talking all.darn.day


You see how far away he is?  Still talking to me.





 talking ...

 STILL talking...



 TALKING! LOL


 Yes, yes. talking, talking, talking ... dear God help me, still talking

 My turn to talk - The Dad washes windows way, way up there on the 16th floor
I try not to think about it

We made our way back to the van, back to ANOTHER parking deck and ANOTHER hospital annex building and took an elevator down and one back up and then walked OVER to the building (sigh) and finally made it to the geneticist's office who was running VERY far behind but praise the Lord, they had a movie playing.

I could have kissed someone.

45 minutes after our scheduled appointment time, we got called in for height, weight, skull measurements, etc. Height and weight require that we REMOVE the confounded newly repaired AFOs all while AB talked and touched and wiggled and asked questions because DUH, we were in the doctor's office and they have cool stuff that is strange.

Then carry the AFO's, shoes, socks, backpack and grabbing the boy with the extra appendage I've grown out my a$$ my pinky finger and nudging him with my hip I directed him and all our crap to exam room 45. And I prepared for another LOOOOOOONNNNNNGGGGGGGGG wait because that's how it usually goes only this time the Doctor was talking to us before we even got into room 45.

"F-G" he says.

"really? For REAL this time?" because we've tossed around this diagnosis for a long time but he's never been prepared to put it in the records.

"Yes. I'm putting it in his charts TODAY. You can have whomever needs to, contact this office and get that diagnosis in writing."

He went on to explain his rationale. First of all, if you've done any genetics stuff, you know it takes YEARS to gather enough clinical data to prove something, particularly if the patient is AHEAD of medical science.

Last year AB's microarray came back with THESE results which was awesome in and of itself because he's the first patient in our country EVER to turn up that particular duplication.

But the geneticist said he wasn't as concerned with those duplications as he was about that fact that our current medical science has only ONE lab test for only ONE of the five FG genes. AB was negative for that test.

However, he went on to say, in the last six months, researchers have identified the other four genes. Now we wait the six months to a year for researchers to develop the lab tests to identify those genes in patients and we test AB again to prove the Dx.

Finally, the geneticist says no clinical proof is necessary. The lack of change in AB's developmental delay, the chronic issues he has with IBS and toe walking, all of his facial features in addition to his mannerisms are enough for it to be in his charts.

YIPPEE!!! I thought i would jump up and kiss the doctor! AB was just glad there were no shots today.

Now we hook up with the FG support alliance, dig up resources, assistance, etc. and contact the ONE.AND.ONLY. research lab in our ENTIRE.COUNTRY that is doing FG research (the lab that is an HOUR from here, SQUEEE!!!!) and ask, nay BEG them to let AB be in their research for the four other FG genes.

Once AB gets a positive test for one of the other FG genes (about another two years or so) we test the girls to see if they are carriers. VOILA! Genetics at it's finest.

I drove home happy, picked up pizza for the crew and gluten free pizza fixin's for me and...

Sissy raged for the fourth night in a row.


[1]what? I never told you i was a melaleuca rep? well I am. So ask me about it so I can get Bigger checks so you can learn all about healthier living through chemical free products

[2] you might think that was annoying. NOT SO! What was annoying was that he attempted to get into the van while the alarm was set SO.MANY.TIMES that he actually broke the lock on the sliding door. I got irritated one too many times about this issue which in turn irritated him right back. (oh, it's been a really RIPPING good time, this van door issue he has.)

Now he refuses to get in the van until he has seen the flashing lights that indicate I've turned off the alarm with the key fob. It's gotten so that from 25 feet in an empty parking lot, with my arm raised as high as it will go, I can turn off the alarm so he can skip to the van and get in because did I mention? AB has to be first. The sun will go supernova if we don't let him be first. I shit you not. SUPERNOVA. His meltdowns are that bad.

Stress: Portrait of a killer

Available for instant online viewing on Netflix or vguide (and a host of other sites - just do a search), Stress:Portrait of a Killer by National Geographic.

A must view for those of us living with high levels of stress every day.

A segment of the video includes research of stress on moms with special needs children. Ladies, six months of prolonged, extreme stress like that which we endure raising our kids takes six YEARS from our life.

Moms, please watch it.

Orlando folks, I will try to have a copy of it available even if it means I have to route it through my laptop to a TV.

Tuesday, January 18, 2011

What I have to say

You might think that after 250 posts I've already talked a lot about what I think and feel about our situation. The truth is, I hold a lot back.

The irony of this blog is that I started it so that people directly involved in our family's life could read it and stay on the same page: so I didn't have to call or email or contact everyone every time something changed with Sissy's case. It also prevents those but you told "susan" xyz and told me pdq and now we're all confused. what's the REAL story? conversations because let's face it, as hard as we try, humans can never tell the same story twice. But alas, for my best intentions, the people this blog was initially intended for don't read it. Yet I censor what I say here anyway.

I censor myself because there are a mess of thoughts, emotions, truths and issues that if discussed openly would cause my lynching or thereabout by some purposed readers. I'm not really looking for a mob scene or for spilling ugly truths publicly. Over time the censorship became one of protection from the lurkers that think they know a thing or two about what they believe to be true in our RADical homes. Although I've not personally contended with malice, many of my blogger friends have. So I step lightly.

As a result, over time I feel like my posts have been superficial and not really expressed the depth of despair and loss I suffer from. Many of you tell me how much you appreciate my honest, bare-bones, raw approach to what happens in our family's daily life. I have received those praises with a grain of cynicism. Really, I'm not being as truthful as I could be. I restrain myself out of fear.

The truth is, I'm in no way leading the life I thought I would be. You know those conversations we had when we were kids what do you want to be when you grow up? All I got for that is "#$@& that Pollyanna #$**"
The truth is, that makes me spitfire angry; grind-my-teeth-to-nubs angry; punch-holes-in-drywall angry; go-to-the-firing-range angry; drive-off-and-never-come-back angry.
The truth is, I have allowed Sissy's crap to usurp my very being, everything that I am and hold dear.
The truth is, I'm an amazing woman but I don't know it because every day I'm confronted with an alternate truth that I'm a despicable, vile woman, the opinion of an 11 year old girl.
The truth is, I struggle to call her "daughter".
The truth is, I don't care that I struggle to call her "daughter" nor do I care that if Sissy knew of my struggle it could possibly hurt her feelings.
The truth is, it probably wouldn't.
The truth is, I keep hanging onto the sliver of hope that she might care.
The truth is, I don't see the point of carrying on this facade anymore.
The truth is, I don't have a choice.
The truth is, every day is a struggle to get up and try again.
The truth is, it doesn't make any difference to Sissy whether I do or not.
The truth is, once upon a time I had potential, vivacity, hope, joy, vigor, vitality, exuberance, selflessness, kindness, endurance, courage, determination, drive, and tenacity.

Now I have one dark, dismal day after another.

Raising a RAD has stolen it all and I'm terrified I'll never get it back.


November 2008 - the last time we had a family photo
At Demonstration Day for AB's Hippotherapy

Sunday, January 16, 2011

What Grace the Dog says

Of course, as a dog, she really only says, "woof!" which probably sounds more like, "RRRRrruFFFFF!" because she's a lab and her bark is loud, commanding and startling.  But she's a big lug.  And a wee bit dumb.

OK, she's a lot dumb.

Par for our life, we adopted her from the ASPCA. A beautiful black lab, not a mutt like our precious Hope was. When we laid eyes on her we thought who would leave such a gorgeous animal at a shelter? Then we brought her home and said, Oh. Now we understand. She may be beautiful and have all the attributes of a Labrador Retriever [1] but our Grace is appropriately named. She needs lots of grace.

On many occasions she has run full-tilt through the house and slammed her head into a wall. Which doesn't help her cause.

Not very photogenic - she's afraid of the camera flash


Grace licks. According to the vet, it's her way of saying "i submit to you". She licks and licks and licks. You can't pet her for all the licking.

She also hugs. She'll jump all 62 pounds of herself into the recliner and land in The Dad's lap, put her front paws on his shoulders and lick his chin all the while her tail is thumping so hard on the foot rest you're certain she'll break it - the foot rest that is. Her tail is made of steel apparently.

Since Hope's passing, Grace has slept in our room. Most mornings we wake up to the sound of her steel tail thumping a whole in the concrete slab our house is built upon.

She eats her chow off the ground, a new development in her dietary habits. We're not sure how it came about but about a year ago she refused food in her stainless steel bowl. So we put it in plastic containers which she still refused. Now it's on the ground and it has been that way for a year. She simply won't eat food out of a bowl.

Aunt Jenn takes much better pictures


She recently got a clean bill of health from the vet: no more heart worms. We all breathed a huge sigh of relief since the worms were one of the contributing factors to Hope's death. A year ago I would have told you Hope would outlive Grace, now I am confident that Grace has at least two more human years to add to her eight, if not more. Most likely, hip dysplasia will make her senior dog years difficult.

But I don't think even that will stop the licking.

WG and Gracie chillin' under the trampoline


The day after Hope died, Sissy was in the yard doing a "dirty discipline" for whatever behavior she did. Her chore was to move some decorative garden rocks. We did not keep both eyes glued on Sissy the entire time, like we usually do, leaving her alone in the yard for a few minutes with Grace. When we returned maybe two minutes later, we observed her beating Grace on the head with her fist. Sissy has not been allowed unsupervised time with ANY animal since then. [2]

Maybe it was the hard knocks to her head, maybe it was Hope's death, maybe it was the long months of recovery from the heart worms, but Grace is terrified of Sissy.

When Sissy screams, Grace cowers.

When Sissy reaches out to pet her, Grace is reluctant.

When Sissy rages, Grace hides in our room and balls up her body into the tightest ball she can make. In fact, Grace doesn't lay stretched out if Sissy is awake in the house.

Grace is even cautious about licking Sissy.

We've tried telling Sissy that her behaviors are frightening our dog. There's no way that would be enough motivation for her to stop her nonsense. That would be like asking a drunk to quit the bottle because the gas prices are going up.

Grace has passed through the worst of her grief about Hope. They were dog mates for seven years. We've tossed around the idea of getting another pet to keep her company and because we miss owning two dogs but our biggest hesitation to our decision, is Sissy. How could it be responsible to get another animal when Sissy so greatly impacts Grace's doggie life?

It wouldn't be.

[1] as i type this, I'm drinking from my Black Labrador Retriever mug which says, "The Labrador Retriever was developed in England in mid 1800s. The beloved Black Lab is playful, loving to people and hard working. He can be counted on as a true friend anytime, anyplace, and is highly respected for his prowess at many jobs: as a guide dog for the disabled and as a search-and-rescue dog. The Black Lab has consistently proved his worth in all fields and has truly earned the title "all around dog." It was once said the Black Lab 'was so intelligent that it seemed it might speak at anytime.'"

Oh, if only that were true about our Gracie.

[2] UGH. In december while in the hospital, Sissy apparently told the staff that she's not allowed to be with the dog unsupervised because we think she's going to hurt the animal. So at discharge the doctor told me all about how Sissy doesn't have the motor control to adjust the pressure in her hand movements and that is why she needs to be taught appropriate petting - that it's an occupational therapy issue. I didn't bother telling the doctor Sissy POUNDED the dog with A FIST. Whatever. Let the doctor think I'm an ogre of a parent for not letting her alone with animals. I know the truth about Sissy even if Sissy doesn't. I'm certain Sissy left out the little detail about killing her fish ...

Friday, January 14, 2011

What WG says




Making a Christmas project


Our conversation just last night at bedtime:
"Mom! Hooray! Sissy has respite, *whispered* no screaming for two whole days!" She was very giddy and high-fiving because seriously, no screaming for two whole days is big stuff around these here parts. Then wistfully, "wouldn't it be awesome if we had no screaming for a whole week ... or a month... or a YEAR!"

"yeah, that would be ... amazing."

"yeah, so her respite provider can hear it. Only, they'll get tired of it too and send her to another family. And she'll scream for them and that family will send her to respite and she'll scream and respite and scream and respite until eventually the WHOLE world will have had Sissy and heard her screaming and finally, after everyone has had to deal, they'll send her back to us and we'll start it all over again."

and the light in WG's eyes was gone when we both looked at each other and acknowledged that this is the very sad, honest truth about Sissy. So I played it off with a "heh! Yeah, that would be weird! But guess what? Saturday night it's just you and me at home and we can snuggle in my bed and watch net.flix movies ..."

"...yeah! And stay up all the way until nine o'clock!!!!"

rofl. She IS only six. Nine o'clock would be pretty late for her. I was thinking along the lines of 11 or 12 ... but ok, let's go with 9!




She got another Lion!


She's only six. Six and had to deal with a world of pain, trauma, fear, anxiety, depression, psychoses and still, STILL she is so clever, so articulate (she gets it from me *wink*), so wonderful. If she was the only child I adopted, my tale to tell really would be one of those nauseating hallmark movie specials about making a beautiful family and having a wonderful life through adoption.

I remember bawling for days and days when we found out BM was expecting another girl. I was certain I'd be raising another Sissy. But God is merciful sometimes (ok, ALL the time but when you're living this daily hell, it's hard to remember the always part about God's mercy) and he knew that Sissy and AB was all this gal could manage. He also knew that WG would be as equal to the task as I am. Because WG? She looks out for those two, more often than I give her credit for.

But WG has her own issues to contend with. Like these lions. It started out with a love of lions and has morphed into a fetish of all big cats. She decides the night before what big cat she is going to pretend to be the next day. Sometimes she writes it on sticky notes and affixes them to her bed so she "won't forget what she wants to be". On panther days, she insists - has-a-royal-fit-if-the-laundry-isn't-done - that she wears her black pants, black turtleneck, black socks and black boots. Because that's what panthers are, black.

Lately, there have been a lot of black panther days.

She'll say, "mom, what animal do you think I should be tomorrow?" and I'll play devil's advocate and say something like a giraffe or a hippo. which makes her laugh at first but then irritates her because she wants me to say something fierce and ferocious with nasty, horrible teeth and claws. Every now and then I'll say, "i don't know WG. Once it would be nice if you woke up in the morning and you were just plain, old WG, the beautiful six year old daughter I love so much." She doesn't like that response either.

No, I've accepted it even if she hasn't been honest with herself about it. WG feels safe and protected from her life and this world if she can be some fierce creature all day. Because who hurts a lion? No one, that's who. Lions hurt YOU, not the other way around. It's her six year old defense mechanism.



The only "asked for" gift - a new stick horse


WG is selfless. I don't know if that is typical of six year old girls. She's my only NT. So when it comes to gifting, she's tough to shop for. Last year the only gift she asked for was a gun. Oh, you should have seen the mall santa's face when she climbed in his lap, all 40 lbs. of her five year old self and loudly announced with confidence that she "wants a gun!" I nodded my head to the Santa, letting him know such gift would be supplied and he gave me a raised eyebrow.

This year she only wanted a new stick horse. That's it. Just a stick horse. Specifically, the $5 brown one from the dollar store. But since that's all she asked for, I bought a $5 red cowgirl hat and the best damn stick horse I could find from the most expensive toy store in town. This kid deserves a real pony, dammit.



100 school days/100 blocks Lego tower - her class project


She's incredibly smart, holy crap, she's smart. They'll be testing her in February for the advanced education program our county offers. Eh, if she chokes on the test and doesn't make it into the program, whatever. It'll just mean she needs to keep working on being a "normal" kid because there's nothing normal about her life.

There's no support for the NT kids of challenged siblings. Not even recovery groups for the ones that are abused or suffering PTSD because of the challenged siblings. And WG doesn't even have any NT siblings to commiserate with. She has me and The Dad. And many times it's me tucking her in, teary-eyed again because of Sissy and WG rubbing MY back and kissing ME on the head and saying it will be O.K.

God, she's an amazing kid. Inspires me, amazing. Deserves the world on a friggin' silver platter, amazing. Makes me cry just thinking about how amazing she is, amazing.



At Noni's dock on the lake


So we have conversations, my make-it-up-as-we-go-along conversations about how to deal with challenged siblings. She knows she can say anything to me about them and I won't get mad. She also knows that our conversations must be private between her, me and The Dad. She is learning that most kids don't have to deal with this and that this isn't the norm. She is learning that just because they're challenged, she doesn't have to be; that she is free to soar to all the amazing heights she can achieve regardless of what happens in their lives.

She is learning that just because she can answer AB's math questions in her head faster than he can blink it doesn't mean she should call the answer out loud and aggravate him (she IS allowed to come whisper the answer in my ear to see if she's right - which she usually is). She is also learning our "games" and "secrets" and "white lies" that The Dad and I do to get correct behaviors and truth from Sissy or to help AB understand. She knows the cue from me is a sideways wink and a slight nod of my head and she returns it with a wink and an OK sign letting me know she's in on the "game".

She is learning things no parent should have to teach their six year old. Including the "WG, sorry. Mom's brain is all crazy-fried today. I just need ten minutes before I can spend time with you."

I hate it when I have to put her off like that but when Sissy has screamed for another 2 hours and monopolized yet one more after school afternoon, I just can't think. I have no mental energy for a bubbly, vivacious, energetic, bright six year old. And it's really hard not to hate Sissy for stealing that too.

When I'm far, far away in my mind, she grabs my face in her two little hands and brings me back. "Mom. Mom are you listening to me? Look at me mom." And I do. I look into her hazel eyes and I smile ... and I come back to her, every time. "Sissy is driving me crazy too, mom."

"I know honey, I know. I'm sorry."

"it's OK mom. I get it. It's just freakin' KAH-RAY-ZEE around here sometimes!"

"Yes it is, WG, yes it is. Go get your AR book, let's read."


WG is every bit her pseudonym
WONDER GIRL

I wonder how I was lucky enough to get this girl

Wednesday, January 12, 2011

What AB says

On the dock at Noni's house


He comes skipping into my room, sidles up to the side of my bed and then bumps it with his body. *bump bump bump*

"mom."

"mom."

"mom."

"whatarewedoingit'seightoclock?"

"Mom."

*bump*

I groan and peek out from my covers. He kisses my eyelids and hugs my head. "Momisittimetogetupmom?areyouawake?" *bump*

"I am now."

"Goodiwantsausagebiscuitsforbreakfastcanigetitnowandapplejuiceandmustardohwaitwe'reoutofmustardiforgotoksocanijusthaveketchupwithitthenmom?"

*more groaning from me as I pull the covers over my head*

"Momit'seightnineteennowmom.mom.MOM!"

"OK!" i holler exasperted.

"YAY!" and he skips away.

really. he skips Kind of a skip/hop/bunny binky sort of thing. Classic Asperger stuff. I love it. I drives me nuts but I love it. And yes, he really speaks the way I've typed it, usually without taking a breath and mumbling. Oh, and he has a speech impairment. So it's LOADS of fun understanding him. *rolls eyes* Then there's the stimming days and the giddy days and the depressed days and the anxious days and my favorite, the i'm-so-freakin-excited-i-can't-stand-it-but-i'm-going-to-be-as-stalwart-and-still-as-i-possibly-can-and-answer-you-in-one-word-answers-so-i-don't-have-to-stop-thinking-about-how-excited-i-am days. LOVE those days.

Like Sunday, his 10th birthday. He asked to go to Golden Coral to eat. Our Golden Coral has a chocolate fondue fountain. He likes this fountain of chocolate. So the entire day was "when are we going?" Which we heard about 1000 times before we even opened eyes. So The Dad and I put a actual time on it. Which may have made it worse. Because then we got "wait.whattimeagainarewegoing?" followed by a whispered but giddy, "ilikethechocolatefountain." Eventually our response was a hollered-in-unison, "THREE O'CLOCK!!!!"

Then we got in the van and left to go. And he was a cool cucumber. Not even a flinch of a facial muscle. Nothing. He absolutely did NOT betray how excited he was in any way almost to the point of us thinking he was mad or upset about something. But you can't say, "AB? Are you ok?" because that makes him mad. Of course he's ok. He's thinking chocolate fountain chocolate fountain chocolate fountain and if you interrupt his meditation it puts him off kilter.

Finally, FINALLY! He and The Dad got up to go to the chocolate fountain. I'm not kidding, my son literally skipped as high as his father is tall all the way back to our table. Then it was not stop chatter chatter chatter with chocolate and what-nots oozing all over his mouth, teeth, face, hands ... he's a mess when he eats chocolate, did I mention that? seriously a mess when he eats chocolate. I don't think he actually EATS it. I think he attempts to absorb it into his cellular DNA by any and every means possible.

And this is every day life with AB. Right now his AFOs are waiting to be repaired (again) so he's toe walking and without the proprioceptive input he gets from correct heel-toe walking, he stims. ALOT. Can we say "weighted vest, vibrator chair and brushing" anyone?

Christmas photo montage

BTW - these are all i'm-so-freakin-happy-i-can't-stand-it faces

Because AB is an aspie, he is usually going to be stone-cold truthful. As he says, "lying is illegal. It's against the law and you'll be arrested and put in jail." So with the occasional fourth grade boy tall-tale escaping his lips, 99% of the time we can assume what AB says is the God's honest truth. For instance, this past fall, Sissy told lie after lie about a school note she insisted she never got from her teacher, a note her teacher said to me, "didn't you get my note? Right, I should have sent that home with WG. I forgot, sorry." Observant AB saw Sissy hide it in her binder while we were in the van while she shouted at the back of my head that she WAS telling the truth, honest she was! And I heard AB mumble, "waitwhatwasthatwasn'tthatit?youjusthidit.Iknowthat'sthenote,thenursealwaysusesthatpaperandIseetheteacher'swriting.MOM!SHEHASTHENOTE!"

To which Sissy replied, "WHAT?! How do YOU know?" And I was rolling my eyes. Gig was up and I owed it to AB, again. If it hadn't been for him, it might have been one of the times Sissy snowed me with her lies.

Then there's the other things AB says to Sissy out of frustration:
Sissy. Lying is a sin. You're hurting God when you lie. If you hurt God you'll go to hell.

Sissy. You could have cool stuff if you didn't steal and lie.

Sissy. Just stop screaming and mom and dad will give you back your stuff again.

Sissy. If you would just act right you wouldn't have to go to the hospital.

Sissy. Stop lying. Just tell the truth already.

Or the conversations AB has with other people about Sissy:
I just wish she'd stop screaming. It gives me migraines. She always screams anyway even when I tell her I have a migraine and that's mean. i don't do that to her when she has her migraines.

She lies. She always lies.

She hurts our dog. That's mean because the dog didn't do anything.

She makes mom cry.

Everyone is always yelling because of Sissy always yelling. I hate it.

Or the things he says in sheer frustration and desperation
That makes me want to cry for him
JUST MAKE HER STOP SCREAMING! I CAN'T TAKE IT ANYMORE!

UGH! She always lies! She's just a big fat liar!

AB holding his finished project


He loves her. It's a pure love. But he is exhausted and exasperated. Truly, if it came down to Sissy against her parents with a CPS report, AB would be the one that vindicates us.

My voice may never be heard about how challenging it is to live with Sissy, but I hope that one day someone will finally listen to AB. I couldn't say it any better than him, even if I have to translate his garbled speech.

Monday, January 10, 2011

What The Dad said

I forget to blog about the other people in this story because there would be no story if there wasn't a RADical RAD living under the same roof as the rest of us. Truly, we'd have a very ordinary existence, maybe even a bit dull. My family has a story to tell because we have Sissy.

That's demented.

So this week I'm going to highlight each of the four nonRADs living in this 1200 square foot matchbox with her. And maybe even the dog. Because seriously? The dog has thoughts about the RAD too. And they aren't good ones.

Today I highlight The Dad. My TALL, hunky man. Tall. Six foot seven inches (in his shoes) tall. And I'm only five foot four. Kissing is a challenge. I have a pair of four inch heels and that's still not enough to kiss him properly. He just barely walks through door ways without ducking, tall. He has gotten many whacks in the head from ceiling fans, tall. But I forget that he's tall. For 14.5 years I've lived with tall so I just don't think about it. And even with this giant in my life, I still grab the stool to get things out of reach instead of calling for his help because I'm all miss independent that way. But then we'll be in the grocery store or something and someone will say to me, "wow. He's tall!" And I'll say, "oh yeah. right. He's tall. I forget. But it sure makes him easy to find in a crowd!"

He's a fantastic businessman, owning, operating and managing all aspects of our window cleaning company. He has a way with our clients both residential and commercial that can't be learned in a text book, it just comes naturally to him. He has single-handedly kept our business open in this absurd economy and at the same time managed to earn our family an income. We'll never be rich but the bills will always be paid and the pantry will always have food.

We've endured the stress in different ways but in general have the same thoughts about our situation. He is introverted. I blog. He plays word games on the computer, I quilt. He smokes a cigar, I drink a whiskey sour. He is restless and goes without sleep trying to figure things out, I crash and burn and sleep for ten hours without another thought. Most of the time, even if it requires a day of hashing out with a few angry exchanges, we usually discover that we are thinking about the same things where Sissy's concerned. And when we have different view points, it usually helps the other person gain perspective instead of lose it.

We have the I'm losing it days too. On those days we have a "tap out" system in which we allow the other adult to just walk out or away when things get too RADical. No questions asked just "Go, I've got this." Or maybe "You need to go" when we have to help the other person recognize they're getting too emotionally involved. Sometimes it's a "go take some time for yourself today" type of thing. We have to cover each other or we'll fold like a house of cards. This incessant stress and trauma in our home demands that we take care of each other first and foremost, a task we often overlook and then are jarringly reminded of when our the other is crying, "uncle!"

We also started a "three positives" email, a suggestion from my fabulous cousin. Every day we email each other three positive things about the day before. Even if the day before was hell on earth, we conjure three positives. Because The Dad said, "We don't have FUN anymore! Everything we do and talk about is therapy, medicines, doctors and Sissy!" and he was right.

There are conversations about news events that are scarily similar to our situation or worse, the that could be us stories. Stories about adoptive parents being killed by their RAD son or bipolar fifteen year old daughters hiding pregnancies and delivering babies in public restrooms. Tales of mentally ill persons wreaking havoc on society, killing indiscriminately with weeks of follow up stories telling the public that "everyone knew he was crazy but no one did anything." Articles about heartbroken adoptive parents that lost a child to a drowning because he knew he couldn't swim but jumped out of the boat anyway or interviews from jail cells with criminally insane persons. Daily news about meth rings, shoplifting crimes, prostitution, rapes and the standard police blotter about stupid crap college kids do. All of it makes us think that could be us. that could be Sissy. this could be our future no matter what we do for her today.

The stories that seem to give us the greatest pause are those that include indiscriminate killing by persons that are later revealed to be mentally unstable followed by interviews with people that knew the individual wasn't well. We nod our head in understanding when we hear the interviewees say things like "I was worried and notified the police but they couldn't do anything" or "we did all we could for our child but in the end, it wasn't enough, it was never enough" or doctors that say "my patient refused treatment" or roommates that say "I was terrified for my life but was more terrified to say anything". RAD kid we think to ourselves. Bipolar and not taking meds. Once upon a time, in my naive little life, I would have blamed the parents for not being more supportive of their ill child and thereby allowing the crimes to occur by nature of their passivity as regards to their child's needs. Not so any more. Challenged people are going to do what they're going to do, irrespective of any assistance they have access too.

Oh, and then there's the broken system that makes gaining access to that assistance almost impossible. But that's another post.

So after The Dad read yesterday's post, he came to me and hugged me. Then he gave me his brilliant opinion, in light of the Tucson, AZ killings this weekend.

He doesn't lament, grieve and mourn about Sissy the way I do, in part because the nature of the father/daughter relationship is different than mother/daughter. Sissy's issues don't play on his heart strings the way it does for me. He loves her, she is his oldest and truth be told, he always wanted a daughter first where as I wanted a son first. He has come to a place of acceptance about her challenges and the nature of his relationship with Sissy. He put it this way: If God had said to us that we would be caregivers, not parents; that we would be responsible to protect Sissy from herself and from others not nurture her; that we would be expected to love her but never be loved back, would we still have chosen to parent her? The Dad says that yes, of course we would have, but we'd have done it with full disclosure instead of being blind-sided, which might have made it easier if we had known from the beginning what we were getting into. It certainly would have minimized the grief of the loss of something we unfairly anticipated in our relationship with Sissy.

He went on to say this: Knowing that there are despicable horrors every day and that even just recently a mentally unstable individual, motive unknown, has taken life wantonly, he regards our position as one of protection for the world. Point of fact, he said that by building one small safe room for Sissy, we just might be keeping the rest of the world safe from her when our intent was initially to keep her safe from herself. He said it has been a tough choice to give her things that seem reprehensible because a parent wants to shower a child with affections, possessions and time but the truth is, Sissy needs a stark white, structured, institutional-like environment to be safe. And if we can provide something as close to that as possible and as a result it prevents her from doing something reprehensible later, then so much the better.

We won't know what the future holds for Sissy or for the rest of us until we march through time but if I go by The Dad's estimation, no choice we make for her mental health today is too small if it means preventing harm or loss of life later.

You see? He's very keen, yes?

Sunday, January 9, 2011

Far, far away in my mind

I've had lots of things to blog about.
But I've been away.
Far, far away in my mind.

I've had lots of thoughts and feelings.
But I've been away.
Far, far away in my mind.

I've not read a single blog
by all of the wonderful people I follow.
Because I've been away.
Far, far away in my mind.

I'm not even wistfully thinking about Orlando.
I've been away.
Far, far away in my mind.

Last year, before Sissy went to RTC, many of her items were confiscated in an effort to coral her behaviors. A year later we've learned that she has no affection or affinity for her possessions and actually has better control of her mind and behaviors when she has fewer things to think about. And of course, we built the safe room which is cute but tiny and has little space for extras. So her possessions remained stored in the closet off the garage.

It started with reorganizing WG's room after my BFF returned home. The trundle bed had to be returned and the new Christmas gifts needed to find a place. I remembered a plastic crate of Sissy's things being in the storage closet and thought I could put it to good use in WG's room. So WG's room in disarray, I found myself staring at the bins of Sissy's personal affects that I hadn't seen for more than a year, all for the sake of a plastic crate.

If I had thought first about the emotional roller coaster that task would put me on, I would have skipped it and driven to the local dollar store and bought a new bin for $5. My peace of mind is worth $5. But I'm a penny pinching miser. So I dived in and began sorting, tossing, weeding, making a donation pile and choking back tears.

Once upon a time I wanted a little girl. I wanted to hold her and hug her and kiss her and coddle her. I wanted to caress her and shower her with affection, love and praise. I wanted to teach her about life. I wanted to laugh with her, cry with her and be amazed by her.

The reality is, the best I can do for her is put her in a padded room with an alarm on at night. The reality is she can't have bins full of personal items in part because she doesn't give a flying flip about them, they served only the purpose of manipulating a person to purchase something for her. The "game" of the games was in the getting come hell or high water, not in the owning.

The reality is all the beautiful hair bows and scrunchies meant to encourage her hygiene; the pounds of play jewelry intended to make her feel pretty; the dozen note pads and pretty pens meant to be used to write her thoughts; the hundreds of dollars spent on dolls, doll clothes, doll toys and implements meant to teach her how to play house and mommy so she could model reality; the dozens of birthday gifts purchased with the intent to show her love and to help her develop an imagination in play time, all of it, ALL OF IT, the YEARS of it, the FIVE BINS full of it

have accomplished nothing.

My daughter is broken forever. I have invested all of myself and I'm not closer to helping her than I was the day I became her mother.

pbft

mother

That word means nothing to her. At best I'm regarded as her personal chef and maid, her caregiver. In her mind I probably have a blank, featureless face and an indiscriminate form. My voice probably sounds like nails on a chalk board to her, even when I'm speaking with the most loving, dulcet tones.

The trash bin in front of the house is full as is the back of my van. I returned a few items to Sissy and the rest I left on the shelves in the storage closet with the thought that when Sissy has an "I'm bored" day I can pull out one of them and say, "Hey, here's some things you haven't played with in awhile."

I returned to WG's room and made it up pretty. She was excited to have her room back and was giddily letting me know about it. And as usual, I was far, far away in mind, lamenting about Sissy for the one millionth time instead of staying in the moment with WG and enjoying her enthusiasm.

I think that's what makes me angriest of all, Sissy has stolen that from me too. She has so successfully filled my every waking and sleeping thought that I literally have to pinch myself to pay attention to the two other children in my life that meet all the desires of my heart as their mother.

But I'm a deer in the headlights where Sissy's concerned.

Last night The Dad and I watched a movie. Near the end, after the father has learned that his daughter isn't biologically his child, he has a moment of mental anguish in which he decides not to return to his family. The little girl saw her dad from her bedroom window. He was standing in the yard, staring at the house trying to decide if he should stay or go and his choice was made simple when she burst through the front door of the house shouting, "DADDY!" nearly knocking him over when she jumped into his arms. The movie had nothing to do with my life but that moment brought tears to my eyes. Sissy will NEVER be that genuine in love and affection for any one of us in her family.

The truth is any length of time that I should be absent would net me an aloof, "hi mom" from a distance of 15 feet followed by "i'm hungry" or "I want ..." and then three days of vengeance and retribution. The truth is I haven't hurt this child and never will but she will always make ME pay for what she endured. The truth is I know the truth but it still feels like a bolt of lightning running through my body every time I'm forced to face it. The truth is, I don't sleep and when I do, I'm so tense I wake up feeling like a 75 year old with osteo and rheumatoid arthritis. The truth is I've lost four fillings in my teeth from grinding so hard in my sleep. The truth is I get anxious just thinking of Sissy, let alone seeing her. The truth is she is behaving well today but for how long and more importantly, why? What does she want? The truth is I can go to Orlando but I'll still have to come back. The truth is it's easier to be far, far away in my mind.

Today is AB's 10th birthday. I'm going to do everything in my power to stay present in my mind, even if it means pinching myself until I'm bruised. AB is an amazing young man, a fabulous son and he makes my life brighter and better just by being him.

Wednesday, January 5, 2011

Sissy - teeth

While at the hospital, the staff decided that we needed to speak to Sissy with short, one-word cues when addressing her morning and bedtime routines. Or we could do a chart. [1] The thinking was that too many words spoken to her is what is triggering her rages.

*speaking like Junie B Jones which WG is devouring at the moment*
Yeah, except only I already knew that, see. And like I'm not already doing that everyday, all day. Because, yeah. I have already learned this something like 19 million times from the other 19 million people that think they know what to do with Sissy. Yeah, only the joke's on me, that's why. Because they go home to their normal lives and I go home ... with Sissy.

sigh

For several years now, we have spoken to Sissy like this when giving directives:

Sissy. Brush your hair.
Sissy, teeth.
Sissy, shoe laces, fix them.
Sissy, bed.
Sissy, bra.
Sissy, soap.

Then we use a check system. I say one word while holding up a finger for each routine. She says "check" or hesitates. FYI - a split second hesitation for Sissy = I didn't do it so I'm thinking of a lie to tell you that is believable. So before she can lie, I prompt. "Say only 'check' or 'no'" and a huge frowny, grumpy, pouty face = crap, mom knew. But I don't flinch. I don't let a muscle move on my face. I just staunchly continue calling out routines she should have done. If she didn't do it, the finger on my hand that represents the routine stays up. After we get through the entire checklist, with one-word commands, I one-word prompt her for whatever routines she forgot. If she did them all, I say, "Excellent job remembering all of your routines."

Let's say she comes back from the bathroom claiming to have brushed her hair and it's still a rat's nest. I say nonchalantly, "Check the mirror, make sure that's how you want your hair to look for school today." After the second prompt, 95% of the time she comes back with it brushed correctly. The other 5% I let her leave the house looking like that. Whatever. She wants to look ridiculous, that's her issue.

Ya'll, I'm not kidding, I use more words, vocal inflection and verbal overtures when speaking to my dog. Because I breathe and exist, I trigger her. So the less of me I put in her face in the morning and at bedtime, the less she's going to get royally pissed at me for suggesting that she, oh, I don't know. Heaven forbid, use soap to wash the spaghetti sauce off her face. I know some of my readers are thinking normal kid stuff and ordinarily, I'd agree. Except your kid probably doesn't need a padded room and v.istaril while she rages it out for 2 hours because I didn't believe her when she returned from the bathroom still covered in spaghetti sauce and bold faced lying that she washed AND used soap. It takes only me raising an eyebrow to launch her tirades.

So yes. I use the hospital's suggestion of one-word commands. Yes, I use the therapist's suggestion of praising the good behaviors and ignoring the bad. And yes, Sissy still rages and gives me behaviors.

And then there's mornings like today.

Which started with her alarm going off and her refusing to get up. So I warned her that I'd yank the covers. She didn't budge. I yanked. "Get up. School day." I did the same with the other two. It was tough waking them all this morning. All got covers yanked after a prompt. All got threats of no Wii for two days (the big present they got from their grandma - leverage!!!). Sissy actually got TWO covers yanked because while I was yanking blankets off the other two, she got another blanket. Classic kid move. So I did a classic mom move and yanked that one too.

Eh.

No biggie.

They all got up and like zombies, we all moved about the house doing our morning routines. With one exception. Sissy had to do her RADsing payback. See. That's where it's different than with normal kid stuff. AB and WG moaned and groaned and then got over it. Not so with Sissy. GRUDGEcity. Vengeance. Vehemence. Loathing. Seething. How dare the horrible, despicable, disgusting, vile, putrid mother-figure demand that Sissy wake and then take covers when she refused? Mother must be punished for her abusive behavior.

I'm not kidding. Somewhere in Sissy's brain, that is the message playing over and over. Only, poor kid, all that brouhaha nets her nothing but more problems for herself. It started with the hair. We were doing the "checks". I could see visually that the hair was ridiculous. Her pants were hanging down to her groin, her bra was hanging out of the v-neck of her shirt and she was wearing questionable footwear for a PE day. This is how she pays ME back. Of course, when I called off, "Hair?" she didn't flinch and said "Check." I moved on to the rest of the list and didn't flinch only I left up that finger on my hand.

"Check the mirror and see if that is how you want your hair to look for school today." But like an idiot I added the off-handed "your pants should be worn around your middle. please fix them."

She angrily yanked them up and the game was on.

lie, lie, lie, lie, scream, holler, insisting that she'd brushed her hair correctly. I just said, "no stories, just check the hair." She hollered from the bathroom that she wasn't telling me any stories, blah, blah, blah. She came back from the bathroom with her hair done quite nicely. I said, "Your hair looks nice like that." then she wanted to keep playing her game by chattering on and on and on and on about why she had to do her hair that way after she went back to the bathroom, blah, blah, blah. I said only, "Sissy, breakfast"

Shut down, she played the I'm a mentally challenged kid card and had to be prompted to eat 10 times. She'd space out, staring into some far off land, tongue protruding, hand suspended in mid air dripping milk on the table. "Sissy. eat."

"wha? huh?"

FYI - I hate her dumb bunny game. HATE it. HATE HATE HATE the dumb bunny game. I don't let on though. Can't let her know she's got my number. "Sissy, pay attention to your food or got to school hungry. I don't care. If you're done eating, clear your place."

whine, scream, grumble, complain about all the things she wants to do with her food and the milk in the bowl, etc. "So eat." was my reply. "Then clear you place."

angrily huffing, throwing bowl in sink, but rinsing out milk cup. "Thank you for remembering to rinse your cup" (we have a one-cup rule every day to minimize the number of dishes in the sink. Sissy notoriously forgets to rinse out the milk which means she has to have another cup later)

"Teeth time"

she glowers at me. "Go."

6 minutes later she is covered in toothpaste and presenting to me the toothbrush with toothpaste on it to verify that she has indeed, applied toothpaste to her brush before brushing (seriously. we have to do this. every single time. or she'll fake us out. every single time. 10 years of this ya'll. it's getting old)

and that was the end of my resolve.

"Sissy. why did that take you 6 minutes? I'll tell you why. Because you didn't want to brush your teeth and you don't like that new toothpaste so you applied it to the brush and washed it off over and over and over even though we've told you to wet the toothbrush BEFORE putting on the toothpaste because that is what you do. you wash off the toothpaste. Now you've got toothpaste all over your shirt and you will need to change it. And you still haven't even brushed your teeth."

screaming, lying, gnashing of teeth, rage, rage, rage.

damn

damn damn

"This is what you do Sissy. I am your mother, I know how you think. Just brush."

more two year old crap.

"I will always tell you the truth about your behavior so you can accept it and change it" (didn't actually say these words this morning but I have said them to her in situations like this many, many, many times)

my ears were ringing and The Dad was chiming in. AB and WG were getting irritated and letting us know. Finally,

"SISSY! TEETH!"

she got the job done, changed her shirt (which actually matched the pants this time - we learned long ago not to even TRY to prompt her for matching outfits - it's an exercise in futility). WG complimented her on the new shirt choice. I agreed and said, "The purple in the shirt even matches the purple pants"

And I got them all to school. Sissy got in the last "word" but huffing and stomping out of the van at the car rider lane and ignoring my "have a nice day, see you at 3:30" [2]

AB will be getting a quarter reward AGAIN today for being best behaved in morning routines. Another snarky parenting trick - don't verbally mention the offending child's behaviors, just publicly praise the child(ren) that demonstrate the behaviors you're looking for. But watch out. Be specific - "Thank you for remembering all your routines without prompting and with a good attitude" and be prepared for the RAD to say "HUH? I DO THAT TOO!!!" or some other equally it's all about me response.

Day 2 and it's RAD hell. With two new teachers after christmas because one had a baby and the other went back to college, how long do you think it'll be before Sissy returns to suicidal threats and self-harming and we're back at the psych ward? Here's a hint before you guess, next weekend she gets respite which is what she claims was the reason she got so upset.

My guess? Last week of January.

I'm already feeling a little kitschy and twitchy myself.

[1] OK, sorry, but ROFLMFAO! Chart? CHART?!? O.M.G. We have charted the ever loving stuffing out of that child and the only one that changes their behavior is ME. Yeah, that's who and I'll tell you why. Because Sissy could give a flyin' flip about charts, incentives and behavior mod. Sissy thinks charts are visual white noise to be ignored post haste. They actually suggested Sissy carry it with her to the bathroom so she could monitor herself. HA! This for a child that won't monitor wiping her own butt so she smells like poo and pee 10 minutes after showering (because she won't monitor herself for using soap) So MY behavior changes by learning that Sissy CAN'T HAVE BEHAVIOR MODIFIED BY CHARTS

[2] this is once again, another therapist request. Some are concerned about the separation anxiety during the school day and that sissy needs to be reminded that come hell or high water, I will be back when the dismissal bell rings. So I say this. every damn time we get to the damn school. and it doesn't do a damn thing. but because the damn therapist asks me if I do this damn shit, I do it, dammit.