The joys of bipolar disorder as one of several neuroloical disorders also brings with it the "joys" of being a micro manager. Every time your child has an emotional hiccup, you are left wondering, (a) was this bp, (b) was this his meds need tweaking, (c) he's being 10, (d) his hormones are kicking in. For the most part Jacob's issues are Adhd, (heavy on the H) related. Jis bipolar has been well contained the last 2 years. He does well on the med he's on for adhd, that is until it wears off....between 4 and 8pm. Basically 4-8pm are ...ahem, rough. I also have a prescription for an afternoon dose, but in general it just makes him an insomniac. I don't recommend it, so I ride out the hyperactive, silly, screaming Jake.
So, here we are. Jake will be 11 in March and today he announced (both visually and verbally) he has hair down there. Yes, my jaw smashed to the floor and I had one of those time lapse flash backs over the last decade. With a typical boy there are ways to deal with this. It still may be awkward and difficult, but with a boy who is chronologically 10 and emotionally 6, well, let the social stories commence. Personally, I would rather drink turpentine!
Wednesday, February 9, 2011
Monday, January 3, 2011
My Melting Pot
In the land of ASD the one eyed man is King....no wait, I mean the meltdown holdeth ye hostage! Meltdown....such a nice label, it almost conjures up images of a simmering sauce bubbling gently over a low ring. Right about now anyone who has witnessed what us Mom's and guardians of our kids call a "meltdown" are wetting their knickers and rolling around on the floor in hysterics. It's less a simmering of gentle pops and more a glooping, slopping, spitting, gaseous geyser about to erupt.
When you see the signs of an impending melt down your options are slim, you have to if you can (a) figure out the cause of it, (sensory, overwhelmed, frustration, pain etc) and (b) determine if the situation needs distraction, ignoring or removal, (the latter not so easy with a 100lb 10 year old).
Now all of the above will have to be dealt with differently depending on the location. It's not so easy to deal with a melt down in public versus the comfort of your own home. I have been known to leave entire cartloads of groceries at the checkout, mumble apologies to the acne ridden cashier whose jaw is scraping the floor and pushing passed the blue rinsed old biddy who is tutting and insisting a week with her will "sort him out." After several of these experiences I developed a skin that can only be described as Teflon; The Thing has nothing on this Momma. I think the best comeback I've heard when "good meaning" strangers (AKA invasive old farts or IOF's), "he has autism...what's your excuse!" Later on I learned to carry little cards that explained what they were witnessing was not a brat who needs discipline, but a child with autism. It's shut up a few IOF's in my time ;D
Each of my mini trifecta have meltdowns; as Jacob is close to his 11th birthday I can read his on coming fits in a nanosecond, reason and yes on occasion dangling the odd carrot or threat does enough. Cormac melts down rarely, but when he does shields are at maximum and there may be a needle jump on the seismic scale at the local weather station. Hannah however is currently developing a lovely penchant for transition melt downs. Coming in from outside, getting changed, going to the dinner table, leaving the dinner table, getting dressed, getting undressed, getting in the car seat, getting out of the car seat, brushing teeth and lately she's been quite annoyed that she can not control involuntary reflexes like breathing, blinking and yawning.
There is a point of no return with her that means you have to let her scream and rant it out. I know with patience, the above interventions and time this too as a dear friend commented "shall pass like a kidney stone, but it shall pass." After all, I had been told by "professionals" that no doubt Jacob would be in a boys home or worse at his current age when he was not much older than Hannah; not the well adjusted, quirky, funny, straight A kiddo he is today.
In the meantime, I think I shall invest in a lot of spackle, sandpaper and paint to cover up the evidence. You never know when Old Faithful might have to breathe;)
When you see the signs of an impending melt down your options are slim, you have to if you can (a) figure out the cause of it, (sensory, overwhelmed, frustration, pain etc) and (b) determine if the situation needs distraction, ignoring or removal, (the latter not so easy with a 100lb 10 year old).
Now all of the above will have to be dealt with differently depending on the location. It's not so easy to deal with a melt down in public versus the comfort of your own home. I have been known to leave entire cartloads of groceries at the checkout, mumble apologies to the acne ridden cashier whose jaw is scraping the floor and pushing passed the blue rinsed old biddy who is tutting and insisting a week with her will "sort him out." After several of these experiences I developed a skin that can only be described as Teflon; The Thing has nothing on this Momma. I think the best comeback I've heard when "good meaning" strangers (AKA invasive old farts or IOF's), "he has autism...what's your excuse!" Later on I learned to carry little cards that explained what they were witnessing was not a brat who needs discipline, but a child with autism. It's shut up a few IOF's in my time ;D
Each of my mini trifecta have meltdowns; as Jacob is close to his 11th birthday I can read his on coming fits in a nanosecond, reason and yes on occasion dangling the odd carrot or threat does enough. Cormac melts down rarely, but when he does shields are at maximum and there may be a needle jump on the seismic scale at the local weather station. Hannah however is currently developing a lovely penchant for transition melt downs. Coming in from outside, getting changed, going to the dinner table, leaving the dinner table, getting dressed, getting undressed, getting in the car seat, getting out of the car seat, brushing teeth and lately she's been quite annoyed that she can not control involuntary reflexes like breathing, blinking and yawning.
There is a point of no return with her that means you have to let her scream and rant it out. I know with patience, the above interventions and time this too as a dear friend commented "shall pass like a kidney stone, but it shall pass." After all, I had been told by "professionals" that no doubt Jacob would be in a boys home or worse at his current age when he was not much older than Hannah; not the well adjusted, quirky, funny, straight A kiddo he is today.
In the meantime, I think I shall invest in a lot of spackle, sandpaper and paint to cover up the evidence. You never know when Old Faithful might have to breathe;)
Monday, December 27, 2010
Bureaucracy...Bah-Humbug
We happen to live in one of those incredibly rare states that makes allowances for Medicaid and some Social Security Benefits for those meeting certain disability criteria.
In some states it's known as The Deeming Waiver, while others still call it The Katie Beckett waiver. This is the best link I can find so far on what each state offers, if anything.
http://www.cms.gov/MedicaidStWaivProgDemoPGI/08_WavMap.asp
Essentially, we can apply for medicaid benefits on behalf of our disabled child for certain diagnoses as a secondary provider. Sounds fabulous doesn't it? Um....this is a government sponsored program....in the US, and administered by a few states; fabulous it may be, attainable however?? Well, you get the idea.
I have two kids who "should" benefit from the state Medicaid program, but after the hoops, various bureaucratic rings of fire, a permanent sense of carpel tunnel in my writing hand, two technical denials and two reviews, so far I managed to get one of my boys medicaid as a secondary insurance. That was however until I became comfortable with the entire set up. Note to any and all parents, guardians, guardian ad litem and advocates, never, EVER become comfortable with any system that asks you to fill out four trees worth of paperwork before you can even apply. Actually, just don't become comfortable with government bureaucracy in general. Once you do, you will have the week I'm about to have.
So, here I was all smug and chuffed with my clever self, that two years on we had managed to hold onto this wonderos situation of medicaid for my oldest. Last year's annual review came and went without so much as an echoing hiccup. This yearly review came around and I cheerfully collected all I needed, killed another four acres of the Amazon in the process and handed everything into Department of Family and Children, (the starting point in the red ribbon highway).
Two weeks later the certified mail began to arrive....first technical denial for non presence of paperwork and application on time. Final technical denial for the same reason. Now, you have to understand in this state it starts at DFACS and somehow, mysteriously (I suspect they use flying monkeys) finds it's way to a nurse's desk in a grey building surround by grey walls, no doubt with grey hair and a dull grey palor, at least that's how I choose to see her, Nurse Grey. Wielder of the oversized grey quill that based on nothing more than an un dotted i or an uncrossed t, scratches "Technical Denial!" across a giant piece of stained parchment, and then she peers into the camera and cackles wildly while throwing her head back in hysterics. What, a little too much hyperbole?
So, a mere two days post Christmas I have been catapulted from my cosy, rose tinted world of smugness and will spend a good portion of the week camping out in DFACS in the hope I can get a hold of my son's social worker, whom by the way we have never met. In fact expecting her to return a phone call really would get one committed if uttered aloud in DFACS' lobby. At least a 72 hour hold anyway.
Now where did I put that chainsaw? I have a few dozen trees to fell, I'll be needing the paper.
In some states it's known as The Deeming Waiver, while others still call it The Katie Beckett waiver. This is the best link I can find so far on what each state offers, if anything.
http://www.cms.gov/MedicaidStWaivProgDemoPGI/08_WavMap.asp
Essentially, we can apply for medicaid benefits on behalf of our disabled child for certain diagnoses as a secondary provider. Sounds fabulous doesn't it? Um....this is a government sponsored program....in the US, and administered by a few states; fabulous it may be, attainable however?? Well, you get the idea.
I have two kids who "should" benefit from the state Medicaid program, but after the hoops, various bureaucratic rings of fire, a permanent sense of carpel tunnel in my writing hand, two technical denials and two reviews, so far I managed to get one of my boys medicaid as a secondary insurance. That was however until I became comfortable with the entire set up. Note to any and all parents, guardians, guardian ad litem and advocates, never, EVER become comfortable with any system that asks you to fill out four trees worth of paperwork before you can even apply. Actually, just don't become comfortable with government bureaucracy in general. Once you do, you will have the week I'm about to have.
So, here I was all smug and chuffed with my clever self, that two years on we had managed to hold onto this wonderos situation of medicaid for my oldest. Last year's annual review came and went without so much as an echoing hiccup. This yearly review came around and I cheerfully collected all I needed, killed another four acres of the Amazon in the process and handed everything into Department of Family and Children, (the starting point in the red ribbon highway).
Two weeks later the certified mail began to arrive....first technical denial for non presence of paperwork and application on time. Final technical denial for the same reason. Now, you have to understand in this state it starts at DFACS and somehow, mysteriously (I suspect they use flying monkeys) finds it's way to a nurse's desk in a grey building surround by grey walls, no doubt with grey hair and a dull grey palor, at least that's how I choose to see her, Nurse Grey. Wielder of the oversized grey quill that based on nothing more than an un dotted i or an uncrossed t, scratches "Technical Denial!" across a giant piece of stained parchment, and then she peers into the camera and cackles wildly while throwing her head back in hysterics. What, a little too much hyperbole?
So, a mere two days post Christmas I have been catapulted from my cosy, rose tinted world of smugness and will spend a good portion of the week camping out in DFACS in the hope I can get a hold of my son's social worker, whom by the way we have never met. In fact expecting her to return a phone call really would get one committed if uttered aloud in DFACS' lobby. At least a 72 hour hold anyway.
Now where did I put that chainsaw? I have a few dozen trees to fell, I'll be needing the paper.
Monday, December 20, 2010
A blood red lunatic.
Tonight is the Winter Solstice. It's a yearly event, not entirely a huge deal I grant you, except tonight will be the first time in seven centuries we will see the shortest day of the year coincide with a full lunar eclipse. It also happens to be the beginning of the New Year for the ancient Celts.
http://www.outerspaceuniverse.org/total-lunar-eclipse-of-december-21-2010.html
For me it is the inception of something else. The emotional dive into writing about my life and my children. Now, before you click that delete or close button know we are no ordinary family. I am no soccer Mom, nor am I a saint. I am however the primary caregiver to three incredible, amazing, brilliant pains in the asses you are likely to meet in a dark alley. Ha! that got your attention ;)
I have the auspicious title of Mother to three special needs kids, aged 10, 7 and 4, Jacob, Cormac and Hannah. We juggle a plethora of neurological diagnoses, including Autism, Asperger's Syndrome, Early Onset Bipolar Disorder, Ad(h)d, Sensory Processing Disorder, General Anxiety Disorder and...well, I think I've run out of disorders in the DSM IV. Maybe when the DSM V makes it's appearance I can tack on a few more for good measure;) Of course before the DSM was a glint in psychiatry's eye, many of these diagnoses were in fact considered nothing more than feeble mindedness, willfulness, defiance, lunacy.
Lunacy! Fascinating that even now we associate emotion, mood and the behavior that stems from it as connected to our celestial satellite. The lunar orbit binds the Earth in tidal cycles and even casts light on our darkest shadows. With a wry smile the moment is not lost on me that I start this written journey of introspection and daily life on the Autism spectrum on this the first Lunar eclipse I will witness in my life.
So, tonight on this Winter Solstice as I look up at that blood red moon (if I can make it to 2am), I know I will be experiencing something 700 years in the making. A sign that the past is the past and only the present can truly count while our present actions and emotions shape our future. Look at it like a Universal do over, I know I will.
Be well, oh and stay out of dark alleys....the 4 year old has a penchant for mayhem, unless of course the moon is casting it's light on your shadows.
http://www.outerspaceuniverse.org/total-lunar-eclipse-of-december-21-2010.html
For me it is the inception of something else. The emotional dive into writing about my life and my children. Now, before you click that delete or close button know we are no ordinary family. I am no soccer Mom, nor am I a saint. I am however the primary caregiver to three incredible, amazing, brilliant pains in the asses you are likely to meet in a dark alley. Ha! that got your attention ;)
I have the auspicious title of Mother to three special needs kids, aged 10, 7 and 4, Jacob, Cormac and Hannah. We juggle a plethora of neurological diagnoses, including Autism, Asperger's Syndrome, Early Onset Bipolar Disorder, Ad(h)d, Sensory Processing Disorder, General Anxiety Disorder and...well, I think I've run out of disorders in the DSM IV. Maybe when the DSM V makes it's appearance I can tack on a few more for good measure;) Of course before the DSM was a glint in psychiatry's eye, many of these diagnoses were in fact considered nothing more than feeble mindedness, willfulness, defiance, lunacy.
Lunacy! Fascinating that even now we associate emotion, mood and the behavior that stems from it as connected to our celestial satellite. The lunar orbit binds the Earth in tidal cycles and even casts light on our darkest shadows. With a wry smile the moment is not lost on me that I start this written journey of introspection and daily life on the Autism spectrum on this the first Lunar eclipse I will witness in my life.
So, tonight on this Winter Solstice as I look up at that blood red moon (if I can make it to 2am), I know I will be experiencing something 700 years in the making. A sign that the past is the past and only the present can truly count while our present actions and emotions shape our future. Look at it like a Universal do over, I know I will.
Be well, oh and stay out of dark alleys....the 4 year old has a penchant for mayhem, unless of course the moon is casting it's light on your shadows.
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