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.
Monday, January 31, 2011
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.
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.
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:
But after ten years the thoughts go like this:
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.
Ten years of parenting an ASD son with a genetic issue has morphed me too.
I guess my first thought might be:
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:
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,
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.
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.
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.
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$$ off. There's a new acronym: ROTOGLMAO
Riverwalk photo montage
yeah, only lucky for you, you get the silent version. I'm not kidding, this boy didn't stop talking all.darn.day
We made our way back to the van, back to ANOTHER parking deck and ANOTHER hospital annex building and took an elevator down and one back up and then walked OVER to the building (sigh) and finally made it to the geneticist's office who was running VERY far behind but praise the Lord, they had a movie playing.
I could have kissed someone.
45 minutes after our scheduled appointment time, we got called in for height, weight, skull measurements, etc. Height and weight require that we REMOVE theconfounded newly repaired AFOs all while AB talked and touched and wiggled and asked questions because DUH, we were in the doctor's office and they have cool stuff that is strange.
Then carry the AFO's, shoes, socks, backpack and grabbing the boy with theextra appendage I've grown out my a$$ 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 itso 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.
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.
seriously, he looks so stoic but he was GIDDY!
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 ...
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
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
Then carry the AFO's, shoes, socks, backpack and grabbing the boy with the
"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
[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.
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