I'm not sure if many are aware when reading my blog, but I am not a US citizen. I was raised in Ireland with a college stint in England. Living here in the US with three decidedly American children I am afforded an interesting perspective on both parenting, special needs parenting and mixing cultures in general.
Obviously, grandparents play a unique role in the life of the child, regardless of ability, even more so when that grandparent is from another country. This week my father is visiting from Ireland. He is by no means the classic epitome of stereotypical grandfather. He is a relatively young grandparent, not yet 60, and my children will be his only grand kids as I am his only child. He loves them of course in his own way, but he is as clueless today about the peculiarities of childhood and childhood things as he was when I was a girl. Add into the mix three very different kids with three very different, singular needs. It's taken a good decade for him to finally understand these children are indeed not typical and about as long to realize he is Poppa and not merely Frank.
Having said all that, having this extra generation under the roof, infringing on our already precarious routine and day to day stepping stone existence is both unnerving and frustrating. Unlike my Mother who slots herself into our lives effortlessly, pitching in where necessary and happily riding along with the flotsam and jetsam of our goings on, my father is more stagnant, expectant, rigid. He needs as much interaction and entertaining as the kids do. While I am glad to see the bond grow between Jacob, Cormac and Hannah and their youthful Grandfather, by the same token I find myself irritated by his inability to notice when a friendly tease can turn treacherous or when he brushes off a meltdown as nothing when his actions or in-actions caused it.
It is so easy to fall into old grumblings and honestly, unrealistic expectations for him and who I need him to be in my and my three darlings' lives. This trip though, I catch myself; who am I to draw what his relationship needs to be between he and Jake, Cormac and Hannah? In that regard all I can do is nudge them all gently towards each other, step back, observe and wait. This is their journey, all four of them. I am but the facilitator and gentle guide.
Monday, April 25, 2011
Tuesday, April 19, 2011
The 3rd piece
I have always said I have three special kiddos, but never had an official nod to my youngest. I remember wondering why she would only sleep with me, refused any bottle and ended up nursing until she was 3. Yes, you may now scrape you jaw up from the floor. When one is an at home Mum and your kid will only calm, settle or soothe to the boob, it becomes less of an object and more of a life buoy;)
I was worried enough about this that I had Hannah assessed by Early Intervention when she was a toddler, no red flags at the time. As time moved on though, it became obvious I was right and the powers that be were wrong; hmmm, now when did that happen before, oh yes, with Jacob. Last October I'd had it and officially requested an educational evaluation from preschool services. What ensued was a litany of vague offers, delays, blatant disregard for IDEA and an ignorant assumption by the special ed department that I am thick as two short planks and do not know mine or my child's rights. IDEA (Individuals with disabilities education act) states the district has 60 calendar days to get us to the point of an assessment. Legally Hannah should have been in an assessment no later than New Years. We were given a date in early January; fair enough, it was close enough. Then the worst thing that could ever occur in the great state of Georgia happened....we got 2 inches of snow.
Snowpocalypse, the great blizzard of 2011 shut down everything. It was the day after tomorrow. The entire state was paralyzed as we all sat perched on the edge of our sofas, glued to the 24 hour weather reports with images of horrific attempts at miniature, miserable looking snow midgets, 3 car fender benders and worst of all....we ran out of road salt. It was truly terrifying. OK, I jest, but in the south 2 inches is what 3 feet is in Maine. Hannah's appointment was rescheduled for mid February. Well past 60 days. By now I was more than tutting and gritting my teeth a bit. OK, yes I was a swearing, pissed off pacing bitch from hell.
That appointment actually took place and it went well, the educators and psychologist were professional and I could tell they were stressed with the back log they had, no doubt due to severe budget cuts made earlier in the year. Then the shoe didn't just drop, it was a steel toed boot that kicked me in the head. They stated the 60 days now started from the time we agreed to the assessment, ie: mid February. It was near impossible to not channel my inner Vader and want to smite this woman with a single thought but you will be relieved I spared her....for now.
Here we are, mid April and we finally received Hannah's results.
I would be lying if I didn't admit that seeing what you already know in black and white isn't a bit devastating. Her scores indicate a severe sensory seeking, hyperactive on the move, clumsy, low toned 4 year old who still has adaptive delays. She can't use the potty as her muscle tone is so low she has no sensation. I have been changing diapers for over 11 years, and yes I am totally over it. Our eligibility meeting is next week and I've been assured she qualifies, will get an IEP (Individual Education Plan), she will be placed in a preschool to meet her needs, get occupational therapy, picture schedule, perhaps even speech. Sounds rotten doesn't it. Know what she's doing now? Watching cartoons, laughing at Phineas and Ferb and she out of the blue while I was writing this said "Mammy...I love you!" Yup, we'll be just fine.
I was worried enough about this that I had Hannah assessed by Early Intervention when she was a toddler, no red flags at the time. As time moved on though, it became obvious I was right and the powers that be were wrong; hmmm, now when did that happen before, oh yes, with Jacob. Last October I'd had it and officially requested an educational evaluation from preschool services. What ensued was a litany of vague offers, delays, blatant disregard for IDEA and an ignorant assumption by the special ed department that I am thick as two short planks and do not know mine or my child's rights. IDEA (Individuals with disabilities education act) states the district has 60 calendar days to get us to the point of an assessment. Legally Hannah should have been in an assessment no later than New Years. We were given a date in early January; fair enough, it was close enough. Then the worst thing that could ever occur in the great state of Georgia happened....we got 2 inches of snow.
Snowpocalypse, the great blizzard of 2011 shut down everything. It was the day after tomorrow. The entire state was paralyzed as we all sat perched on the edge of our sofas, glued to the 24 hour weather reports with images of horrific attempts at miniature, miserable looking snow midgets, 3 car fender benders and worst of all....we ran out of road salt. It was truly terrifying. OK, I jest, but in the south 2 inches is what 3 feet is in Maine. Hannah's appointment was rescheduled for mid February. Well past 60 days. By now I was more than tutting and gritting my teeth a bit. OK, yes I was a swearing, pissed off pacing bitch from hell.
That appointment actually took place and it went well, the educators and psychologist were professional and I could tell they were stressed with the back log they had, no doubt due to severe budget cuts made earlier in the year. Then the shoe didn't just drop, it was a steel toed boot that kicked me in the head. They stated the 60 days now started from the time we agreed to the assessment, ie: mid February. It was near impossible to not channel my inner Vader and want to smite this woman with a single thought but you will be relieved I spared her....for now.
Here we are, mid April and we finally received Hannah's results.
I would be lying if I didn't admit that seeing what you already know in black and white isn't a bit devastating. Her scores indicate a severe sensory seeking, hyperactive on the move, clumsy, low toned 4 year old who still has adaptive delays. She can't use the potty as her muscle tone is so low she has no sensation. I have been changing diapers for over 11 years, and yes I am totally over it. Our eligibility meeting is next week and I've been assured she qualifies, will get an IEP (Individual Education Plan), she will be placed in a preschool to meet her needs, get occupational therapy, picture schedule, perhaps even speech. Sounds rotten doesn't it. Know what she's doing now? Watching cartoons, laughing at Phineas and Ferb and she out of the blue while I was writing this said "Mammy...I love you!" Yup, we'll be just fine.
Tuesday, April 12, 2011
Poop...it IS all that!
So my youngest, Hannah is 4, and can't potty train...not won't, but can't. Not much different from the boys except she merely flirts ever so subtly with the autism spectrum. In fact, if you ever get a chance to view a documentary call Autistic Like :Graham's Story, that's a lot like Hannah. She has "issues". Ah, hell, don't we all. 10 years ago her needs would never have been met and she would have been berated, put down and frowned upon.
Hannah's diagnoses is Sensory Processing Disorder, or SPD, along with low muscle tone and fine gross motor delays. All of which affects her entire sensory system as well as her adaptive abilities. Don't get me wrong she is her Mother's daughter and is about as willful as a food addict in Dunkin' Donuts, but honestly that has nothing to do with her adaptive needs and central nervous system.
Central nervous system...yup, let me explain. Our central nervous system affects all our sensory abilities and reactions. It feeds into the way we visually see things (too bright, too dark), hear things (too loud, too low) and even how we react to pain and physical feeling. For many children with SPD if they are "hypersensitive" many every day noises and sights cause physical pain. I still have to warn or cover my children's ears if I know a toilet is about to flush too loud. If "hyposensitive" they are under reactive to pain. I have two that will run in to walls and not complain but act like a hangnail is the apocalypse.
The kicker is though most children (and adults, but I will get to that in another post), are not all hypersensitive or hyposensitive. A lot of SPD cases take a little from the hypo and a little from the hyper. An example, I took Jacob at age 16 months to a fire works display. Remember, he was my first and what the hell did I know was typical toddler behavior;) The minute the explosions began he literally passed out in the back pack carrier. The noise was deafening, I even covered my own ears a few times, but Jacob snored throughout. It wasn't until I was walking us back to the car and a motorcycle revved it's engines, screaming past did the wee lad jerk awake, screaming like he'd been stabbed in the head with an icepick. It took almost two hours to settle him. That as my first "aha" moment.
So back to Hannah. She attends Occupational Therapy weekly and I just finally learned she qualifies for special education preschool. Her gastroenterologist confirmed her inability to feel the sensations that tell her she needs to use the bathroom is due to low muscle tone and as such hard stool embedded in her colon...yeas...feel free to barf......NOW;) Until she clears that stool, her muscles are effectively paralyzed and Miralax is our constant companion. We went through an identical situation with Cormac, but somedays it would be nice to have all the wee muckers out of nappies (diapers). Face it peeps, I've been wiping shite for 11 years.......roll on miralax session number 3 and proper early intervention.
Hannah's diagnoses is Sensory Processing Disorder, or SPD, along with low muscle tone and fine gross motor delays. All of which affects her entire sensory system as well as her adaptive abilities. Don't get me wrong she is her Mother's daughter and is about as willful as a food addict in Dunkin' Donuts, but honestly that has nothing to do with her adaptive needs and central nervous system.
Central nervous system...yup, let me explain. Our central nervous system affects all our sensory abilities and reactions. It feeds into the way we visually see things (too bright, too dark), hear things (too loud, too low) and even how we react to pain and physical feeling. For many children with SPD if they are "hypersensitive" many every day noises and sights cause physical pain. I still have to warn or cover my children's ears if I know a toilet is about to flush too loud. If "hyposensitive" they are under reactive to pain. I have two that will run in to walls and not complain but act like a hangnail is the apocalypse.
The kicker is though most children (and adults, but I will get to that in another post), are not all hypersensitive or hyposensitive. A lot of SPD cases take a little from the hypo and a little from the hyper. An example, I took Jacob at age 16 months to a fire works display. Remember, he was my first and what the hell did I know was typical toddler behavior;) The minute the explosions began he literally passed out in the back pack carrier. The noise was deafening, I even covered my own ears a few times, but Jacob snored throughout. It wasn't until I was walking us back to the car and a motorcycle revved it's engines, screaming past did the wee lad jerk awake, screaming like he'd been stabbed in the head with an icepick. It took almost two hours to settle him. That as my first "aha" moment.
So back to Hannah. She attends Occupational Therapy weekly and I just finally learned she qualifies for special education preschool. Her gastroenterologist confirmed her inability to feel the sensations that tell her she needs to use the bathroom is due to low muscle tone and as such hard stool embedded in her colon...yeas...feel free to barf......NOW;) Until she clears that stool, her muscles are effectively paralyzed and Miralax is our constant companion. We went through an identical situation with Cormac, but somedays it would be nice to have all the wee muckers out of nappies (diapers). Face it peeps, I've been wiping shite for 11 years.......roll on miralax session number 3 and proper early intervention.
Hair.....down there!
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. His 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!
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!
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;)
Bureaucracy...Bah-Humbug
Monday, December 27, 2010
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.
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