Living in pictures

Summer Lovin'

2011-06-02T16:53:00.001-07:00

Remember as a kid, summer meant bolting out of the house with toast still in hand, not returning until lunch and dashing out again straight after? Remember at 5 mins before 8, playing with your wind up watch, so it would "appear" to be slow??!! Remember, disgruntled parents standing at the front gate tutting you and swiping at your head for pretending your watch was slow?

What the hell happened in as little as a generation?

Now, I am expected to come outside, sit on a curb or a deck chair 'watching' my kids turning circles on their bikes and scooters in the cul de sac, listening to other parents chastise their off spring....for....being....kids?! What happened to scaling walls, hiking up trees, childhood independence? Suburban sprawl has created a monster..... fear of nothing. Obviously there are everyday doh moments; yes a bike helmet does make sense, don't cycle to the main road, still don't talk to the weird shirtless dude who waves and holds out sweets and candy, but for the love of all that is childhood holy....let them be kids. Let them live and absorb and grow!

The medication quandry

2011-05-31T19:31:00.000-07:00

I find it absolutely incredible the public and even professional debate that occurs when the concept of medication and kids' neurological issues comes in to play. One just doesn't hear the same rhetoric with any other organ in a child's body. Perhaps it's because the brain is such an enigma still, perhaps it's because the brain is what makes us all who we are; all I know is everyone and anyone appears to have an opinion on it.

This is my view, if your kid is neurologically healthy, intact, stable, happy, healthy then more power to you. However, if that same parent or adult chooses to judge another parent with a neurologically impacted child, well honestly, go and soak your head. I certainly wouldn't judge a parent of a child with diabetes and the med they go with to help their kid! In reality anything that is neurologically altering bothers the hell out of most normal folks, and so it should. It took several years, many more episodes and a broken acoustic guitar over a grown man's back to get us to go that route.

It saved my son's life.

When your 4 year old announces he can fly and opens the car door at 65 mph on the highway come back and judge.

Today I have a happy, healthy, hormonal (in a NORMAL way) funny, creative 11 year old. You want to judge our choices? Still soaking that head, bloody hope so!!!!???

Aspies, the good, the bad and the ugly!

2011-05-04T17:15:00.000-07:00

If you have met one kid with autism, then you have met one kid. A good friend said that once. Never a truer word was spoken. Think about it like other neurological disorders, like Cerebral Palsy. With all "spectrum" disorders you can have anything from someone who's so high functioning you have to cock your head, squint with your left eye and stand on your head to see it. Then you see the highly impacted child or individual and it's like a wet fish across the face. You know, the types you either stare at with your jaw dragging on the ground or you are deliberately ignoring, while at the same time feeling relieved and guilty. Yes, so do I, even still, after 11 years of dealing with high functioning autism and a couple of co morbid disorders that tack themselves on for shits and giggles.

I have three spectrum kiddos, all like stepping stones from most impacted to least impacted. They have similarities for sure, but more importantly they are so unique and different. Think of it like one of those venn diagrams you despised in Math class in or in Language Arts. Three circles that intersect in the middle. The majority of the circle is each individual, with bits that overlap with their siblings, both individually or as a trifecta. Aspergers syndrome is a neurological disorder (NO, it's not a bloody disease, you can't catch it and trust me, chemo doesn't help). having said that, yes many of those on the ASD (Autism Spectrum Disorder) spectrum do benefit from other interventions, like therapy, dietary change, supplements or prescription medications.

I have two who need meds and all three benefit from supplements and other holistic intervention, such as chiropractic care. The first that tells me chiropractors are quacks, come see what my oldest is like after a specific adjustment. Night and bloody day!!!! Rainman is an anomaly, which is why it became a movie. They never make movies about the mundane or the day to day slog of dealing with social needs or neurological disorders, hell, that would be far too real and down right depressing...where's the uplifting "Awe' feeling in that? True, people on the higher end of the spectrum are hyperfocused on one or a few special interests. True, they often struggle with eye contact, although I will stipulate not all. I have one eye flitter, one "don't feckin' look at me" and one "let me stare you out of it." I have two sensory seekers, who bounce, swing, body slam all day (if allowed), and one who won't notice if he has lost a limb, but a splinter involves the jaws of life.

They ALL struggle with voice volume and pitch, and intense patience and great speech therapy has helped with that, and all have struggled with fine and gross motor delays (ie: the 11 year old is only now learning to ride a bike with training wheels). However, they all have an incredible sense of humour, an inbred need to please (pre and post meltdowns;). They are uniquely their own little person, and I wouldn't have it any other way.....well ok, some days, but for the most part...nah! Love me my Aspies!

Celebration of a decade!

2010-03-29T18:44:00.000-07:00

I suppose I should start with the usual, Dear or even Dearest. It seems so inane as you must know it is embedded with each and every touch, kiss, caress, hug, smirk and and yes, even the admonishments;)

You turn 10 on Tuesday. Ten years, a decade, and so much has happened in that decade. I would wager you have lived a hundred years in that time compared to any "typical" 10 year old. In the end only you can really know that. The last 10 years I have been your willing and bombastic sidekick to your superhero; and what an awesome hero you have become.

You were born on a Thursday in Washington DC, in a sense the centre of your own nation. Thursday's child. According to the rhyme you had far to go... and little did we know just how far you had to travel. It is a journey that we all embark upon from the day of our birth, but few come so far as you and those like you, the odds are often insurmountable; so much so, many (and some have done) give up as your voyage has been fraught with chasms, tunnels, a veritable array of peaks and valleys. The valleys envelope oh so often, no wonder we wanted to give up; to insist this is good enough. Yet, each and every time, you were there to prove us wrong, to prove me wrong. Sometimes the shadow I thought I was dissolving into was in fact you, casting your soul, willing me on, silently, insistent and expectant.

Tuesday, you turn 10. Such a long way from the day your kindergarden teacher, who truly meant well, asked if I slept at night wondering about your teen years? What would she say now, to the funny, imaginative and articulate boy that sleeps peacefully beneath his weighted blanket adorned with flying rainbow zebras and pegasus'. The same boy that last week made merit roll for academic achievement. The same boy that earned student of the month for his kindness and willingness to share.

Yes, you have autism, but it doesn't have you. I can only imagine the next 10 years my darling. Please, may I hop on that roller coaster too, but only if you promise to hold my hand.

J, thank you for being the light when I am in shadow. On Tuesday you will be 10.

A lil zyprexa goes a long way!

2009-11-15T18:27:00.000-08:00

So, in the quest to try to manage Jacob's comorbid diagnoses (ASD/Mood disorder/Adhd) we had to essentially fire his psychiatrist and search out a new one. The one who received the overdue pink slip was arrogant, lazy and had a tendancy to blow me off....that's a no no when my kid is invoved.

Can I just point out what a difficult situation this is. There are about 600 child psychiatrists IN THE COUNTRY at present so finding a competent one that has a positive influence on his/her patients that also accepts insurance (not to mention the insurance one has) that is not 100 miles from the house.....well there's this thing called a needle and then there's this haystack yoke!

I researched, researched and researched and due to sheer determination and my insurance's rather clever (I'll prolly never say that again) website that allows behavior healthcare providers to write a short professioanl bio about themselves I was able to find a child/adolescent psychiatrist who took my insurance and actually appeared to get kids well....who are as difficult to treat as mine is. So, here we are a week into a new med (zyprexa), weaning off the old silly inaffective med (seroquel) and I have not seen a meltdown in guess what....A WEEK! The irony is I didn't realize how ill Jacob still was until he restabilized on the new med. Just goes to show what we think is normal and accpetable is not always the case.

Jacob is happier, healthier; his teacher's are singing his praises, his siblings aren't as terrified as they wereand I am once again sleeping through the night. So glad I dug out that needle from that haystack....worth the chafing!

Dropping in for some Thomas tea

2009-03-06T11:36:00.000-08:00

Anyone who knows anything about autism knows that fixations and obsessions are part and parcel of the lifestyle. Both boys have had a slew of obsessions over the years. Now I don't mean they are "into" a superhero for a few weeks/months, I mean Jake has had a long winded love affair with all things Star Wars for a good four years now and John still has a fondness for power rangers (well, lining them up in complicated floor art more likely; don't snigger I have pictures).

So, they have their big obsessions but there is still room for mini fixations. Think of it like the best friend that is always over to play, but the mini interests are distant cousins that only pop over for tea from time to time but when they are there the boys are equally enthused with them. Jake's first "interest" was as with 90% of ASD's Thomas the Tank Engine. I do not know what spell that flippin' train can cast over spectrum kids, but he's like crack to them. Once they get the first hit....forget it.

Jake was a Thomas nut until Star Wars entered his life Christmas day 2004 in the form of the original trilogy (which actually was a gift to me, but try telling that to Jake at the time). Thomas slowly dissolved and had to concede to Luke and Han. So, please tell me now why four years later Jake is once again wandering around the house with a bag of his old Thomas trains and is watching the movie repeatedly??? Why the sudden peaked interest? Where the hell have Luke and Jabba the Hut fucked off to, and why oh why did I keep those trains in that box for the last four years.

Oh yes, because I KNEW this day was coming when his old friend would pop over for tea, just took him four years to get here; well best put the kettle on, might be a short stay...maybe?!!.

Bring on the clowns

2009-03-05T16:09:00.000-08:00

Hubby and I realised the last time we were ever able to go anywhere as a family it was probably McDonalds as with a child who is gluten free (as a second heading that way...'nother post though), there are precious few outings we can safely find. We've hiked ourselves to death all over suburban Atlanta and there are only so many other activities you can all share with an 8, 5 and 2 year old. So, when the chance of dirt cheap tickets to the circus popped up I dove at the chance (actually it was more a mudslide that knocked the little old lady out of the line...ok, not really, but you'd have thought I was running with the winning lottery ticket.) Now this was not just any ticket, this was 4 seats ringside, as in row A seats 1,2,3,4.

Then hindsight being 20/20 I had to make a decision whether this was such a hot idea after all. The last time we went to a large, noisy, strobe lighted event it was 2003 and we only had Jake. It was Disney's Monsters Inc on Ice. I dropped over $100 on those tickets and Jake (pre autism diagnoses) lasted all of 10 minutes; he was a screaming, hysterical mess and hubby my Mother and I had to concede it's not worth the hundred bucks. Still, I remember having a faint bad taste in my mouth at the time and dare I say it ...yes...a bit of resentment towards Jake's "behavior." Little did I know at the time he was in an absolute sensory overloaded meltdown. Actually, the fact he made it all of 10 minutes is a testament to his profound strength really.

So fast forward to last week, there I was holding these fantastic tickets and I had a flashback to 5 years ago. Oh God, what if he loses it again, or worse, his brother with Aspergers might lose it this time? After all, John doesn't even like the noise of the vacuum cleaner, how the hell will he manage the band at his feet? I was beginning to talk myself out of the trip and considered donating the tickets or flogging them in the local rag.

It was hubby that reminded me how far Jake had come, and how surprising John could be in potentially sensory situations. He was right of course, but my instincts were cemented in a screaming meltdown from 5 years ago.

The day arrived, and to my absolute surprise (and after lots and lots of prepping the boys) we were there, 2 feet from the ring, so close when the western riders galloped around the edge of the ring, the sawdust was spat at us with ferocity and the earthy smell of their flanks was like a rushing wind . IT WAS AWESOME!!!!!

The boys were enraptured, thrilled and might I add particularly appreciated the farting noises by the clowns, (hey gotta have a toot skit):D To the outsider, you would never have known they were spectrum.... except perhaps that they weren't always sure when applause was necessary or warranted. 'sok though, the clowns waved at them more than once and with a little nudge from hubby and I, the boys could wave back. Oh yes, bring on the clowns!

Wreaked

2009-03-03T16:00:00.000-08:00

"Wreaked!" It's a great word. It has s many connotations, especially for an Irish 30 something.

Wreaked: as in I wreaked the house.

Wreaked : as in "I drank so much I was fuckin' wreaked" (a personal fave when in my early '20's)

However, it's a different wreaked I need to discuss; the one where when you declare you are wreaked from pure unadulterated mental and emotional exhaustion. I am having one of those days I fear....a "wreaked" day.

The funny thing about wreaked days is there often is no rhyme or reason why you are done in on that particular day as opposed to any other. The routine isn't any different, the drop offs, pick ups, daily grind kind of stuff is all same old same ole. Yet, if you really delve into the day and it's inner workings and lift the veil of routine you will always find a deeply hidden trigger for wreakedness. With my lot it's always something to do with the 24/7 nature of parenting two spectrum kids (plus a rather hyper typical toddler).

Today's wreakedness came upon me with sly and cunning stealth. Instead of being done in by bedtime, I was officially done in by 6pm. And I fear it has mainly to do with Jake's mood and general pissyness. Now, if you understand anything about high functioning autistic individuals it's how the slightest thing can swing them from one mood to another in a nanosecond, yet the tantrum that ensues can easily go on for an hour.

Today Jake deboarded the bus and his mood was apparent before seat belts were buckled. He is/was just flat out ornery, moody, narcissistic and the slightest mention of No invited an all out meltdown. Here's the deal, when this was Jake 2 years ago pre gluten free diet, pre current IEP and pre current behavioral goals, it was just part of the daily living in our house. So, after 6 months of pretty good stability to have one of those early days thrust back at me.....well, let's just say my capacity for wreakedness has diminished somewhat. Put it this way; remember when you would be able to guzzle a 6 pack and be relatively sober ....well, this is like drinking one beer and being flat out hammered....you could even say I'm wreaked!

2009-02-26T18:13:00.001-08:00

Yes yes, I know. I am probably one of the worst bloggers you've ever had the misfortune to cyber run into. Honestly, it's 'cause I've been playing single Mum to 3 since October, oh and a very brief stint working daycare. Technically hubby actually is still around, but when you work from 7am to 10pm, he has effectively become a polite lodger.

No more pity party though so you can all exhale now! I've just literally had the attention span of a weevil these days. Why was hubby working such insane hours? Well, we are effcetively over $40,000 in credit card debt and we were trying in earnest to pay it down. Now here's the thing about this debt. We really are modest people. We have a 5 year old hyundai (paid off), a 3 year old Kia (will be paid off in 2 years) and yes I'll concede a lovely house. However, that's not where the debt is centered; it is the toll we pay for having to have a full time stay at home parent and raising two neurologically disabled kids. I don't have the extensive wardrobe or the repaved patio or the pool to show for all this. What I do have are grocery bills, countless amounts in therapy appointments, gas for the cars etc. A house in Md that refused to sell for 15 months ...hence a nasty bridge loan; I don't recommend them.

In today's economy I know we still are truly blessed to have the house, the cars and the food in the fridge, but what we really need is some semblance of balance. The children NEED their father, I NEED my husband and he NEEDS to not worry if he is earning an early heart attack from overwork and stress. Last night we finally decided....Fuck it! Let the creditors call, let them ring 5 times in an hour and hang up once the macine gets it. We actually were handling the debt and even paying it down until all three cards jacked up the interest from 8% and 13 % to 29.9%!!!!!

Hubby was killing himself so we could deal with our respnsibilities, but when the system suddenly shifts the goal posts and expenencially raise your responsibilities without even a phonecall....screw 'em! Hubby is cutting back his over time so he can be with his family more and his wife doesn't feel like she needs to chuck herself off the top of the lovely house. Bancruptcy is imminent, but I'll take that over a dead husband and father and a grieving widow and 3 kids.

No touch the moon

2008-11-17T19:28:00.000-08:00

So my daughter will be 2 in a few weeks. Yes, the baby is no longer a baby; this is a hard place for me to be. Still with her shedding the scales of infancy she is experimenting with toddler hood, individuality and her own wonderful personality. We hear a lot of mirroring from daycare (where I also work)....." No touch.....time out Gavin (poor Gavin)......no touch the window." Obviously there has been a lot of NO TOUCH in the young 2's room. It's part and parcel of toddlers I know.

Still the best part was when last week, there was a glorious full moon beaming down on us as we got home after a particularly late evening. Hannah was tired and ornery, John was tired and pissy and Jake was eager to get back to whatever electronic device had his soul at that time,,....(prolly his DS). To calm Hannah I pointed to the moon: round, fat and shiny and tinny.

Hannah's response...."No touch the moon!" It evoked a bemused smile from me but I say it here, especially in light of the last few weeks we've had in this country.

Oh sweet heart, yes you can,...yes you can touch the moon and don't let anyone tell you otherwise....its not that far and it's not going to break!

My big pity party

2008-11-17T18:17:00.000-08:00

I have been amiss in my ramblings (about 4 months of amiss actually). I have been up to my eyes in effectively being a single parent and dealing with all the ramifications of therapies, doctor's appointments and medicaid hoops (some apparently are ringed with fire...I have scars to prove it). And all before I deal with the everyday parenting stuff. Hubby has been teaching nightschool, so for a while it was me the four walls and the kids (oh and the wee dog) until about 8:15pm....THEN swim season arrived! Now it's 10:30pm before hubby emerges from the abyss. About two hours too late to help me and by that point I'm happy in my singledom and am damned annoyed he has teh audacity to appear at all...I know I'm a shite wife.

Not trying to do the woe is me part hear but I can barely keep it together when everything is as it should be and then I get whammied with needing to find a job, (8 hours each day teaching 3 year olds.....oh and with a psychotic, micro manager of a boss). Hannah gets to come with me and for free, still after 8 hours of that then retreiving my own and having to play Autism roulette each evening (ie: which one will melt down/lose it/demand the impossible/poo in his underwear....actually the latter is easy, that'll be John sigh). Well, it's then me the four walls, a lot of deep breaths and the occasional wet, snotty bawl when all are finally in bed.

I love hubby, but this swim obsession (bee there since we met) is eating into me like ringworm. At first it's just a bit annoying and itchy, then it's downright irritating and finally I want to claw it out with a red hot butter knife (the steakknives are in the dishwasher...that btw: doesn't work).

OK, enough with the pity party, I need to get my ass in gear for yet anohter day with spolied upper middle class 3 year olds....and worst of all their spoiled upper middle class parents.

2008-07-11T19:45:00.001-07:00

We appear to be surviving the gluten free experience. Jake hasn't really noticed and even tried an entire kernel of corn today. He had the brilliant notion if he forked it into his gf nugget and smothered it in ketchup he wouldn't spontaneously combust, and nope, not even a spark. Baby steps and all-I hold onto the fire extinguisher just in case.

Hubby had become the bread czar and is faithfully slaving over loaf pans to "perfect" his various gf bread recipes. I feel it may be a while before much is actually perfected, but I adore his dedication and commitment nevertheless.

I am in a strange place these days. I have been a sahm for 3 years now (right about when Jake was diagnosed with early onset bipolar later to be followed with ASD and adhd). I used to be a teacher....5 years teaching private middle schoolers in suburban DC; an experience to say the least. So I've been home with the kiddos these last few years and although it's not exactly been a picnic all the time I think my being home has gleaned more for the kids than if I had remained as a teacher full time.

Well you've all see the economy and hubby is now all gung ho for me to return to work, and to placate his desires I actually applied to be a paraprofessional in the school system here. In true form to personal offices I have heard very little and have been told repeatedly by those in the know to expect a phonecall the day before school starts. I have a deposit down for a great daycare, and John is starting Kindy. On paper it appears to be a great time to do this.

Yes yes, reality bites, blah blah blah. I do NOT want to go back yet. I know I have explained time and again to hubby about the added extras I do that seem so trivial that can eat up an entire morning or afternoon (medicaid waivers, therapy appointments, insurance fights.) How the hell do I get all these "incidentals" accomplished and be away from the house 8 hours a day; then add on commuting between two school and a day care to gather young uns up once my day is over. btw: aftercare for Jake is a non starter. I suspect hubby thinks my being distracted by anything other than autism, diets, medication, therapies is a good thing. He is a sweet man who is a true to life science teacher and wants to "fix" my issues. Not sure that adding more stress to my life will reach his desired effect though. So here I leave you, in limbo; having done all I can do and hoping against hope no one calls me and come August 4th I will be jobless and happy. I need one more year to get Jake and John through another academic year and another year with me angel girl.

Gf schmee f

2008-07-06T16:10:00.000-07:00

Well, it appears we are attempting gfcf again. For those who aren't too familiar, gfcf is a gluten free/casein free diet. Trust me it's hard enough going gf you add in the cf and it certainly feels like the proverbial cluster feck.

Why? There truly is anecdotal evidence (and increasingly scientific too) that a gfcf diet can help ASD children in both behaviour and health. Jake (8 is what they call a high functioning autistic, although I prefer to say, "This is my son Jake, he loves pirates and adventure books, he is a size 2 in shoes....oh and he has autism."

Well we tried this blasted diet two years ago and me being me went all bipolar manic gung ho into it; poor Jake was thrown to the gfcf wolves cold turkey (which btw, not one to waste irony is also a gfcf food:). Obviously it didn't go well, if it had I wouldn't f'n well be here blogging about my failure otherwise. This time we are going veeeeeery slowly. A little at a time and if we have a hiccup (as today when cheese ended up on his burger) I do not self flagellate and wander around the house wearing sackcloth and shoving barbwire into my thigh, (I save that one for special occasions;)

We had been weaning casein for the last few weeks and started with gluten, but it was time to go to the next level and make the "TRIP!" So we packed all three boogers into the van, drove to Trader Joes to pick up a few wee items it was time to get and guess what trader Joe's have bugger all!!!! Oh sure there's the nod to gluten free living with two very shallow shelves of cereal and bread that could as easily be used as a decent weapon in a prison break, but other than that nada. We were specifically looking for flour (rice, potato etc). I did eventually after much rooting around gouda and some dodgy looking bluish-green curd unearth some soy cheese; triumphant in my treasure find I bounded out the door, certain I could make something from it. 'Course not; feckin' thing has casein in it. Why the hell call it soy, act as if it's soy and then muck it up by throwing dairy back into it. More fool the poor vegans out there, happily chowing down on their soy cheese and granola crackers 'cause you're not a vegan anymore....ha!!!! So there's $7 worth of cheese laughing hysterically at me from the behind the little window of the fridge that ironically says dairy....sigh. Ah sure, who wants gfcf pizza anyway!!?

Intros and exits

2008-07-03T10:36:00.000-07:00

I have been ruminating whether to start a blog or not these last few months. I'm sure I am in essence just writing out the jiggles in my head, and as such this is more a digital diary than anything else. I have been raising my three children for 8 years now (8, 5 and 19 months) and as the older two float on the autism spectrum I suspect I may at times even have something to say; or perhaps I am waxing lyrical here. In this family we truly do live in pictures; children and adults on the spectrum are visual in nature. My oldest can become so involved in a movie or video game he can not separate himself from the visual world. My second son is not as passionate about a visual fantasy world, but he has to have visual cues, pictures and images to help transition.

My youngest daughter appears about as neurotypical as you can get; sleep is still optional and not always necessary, but she is the glue of the three and accepts her brothers unequivically. Of course this may change as she grows older but I sense she already has a deep impassioned bond with both boys (especially the 5 year old). Her compassion in one so young is breathtaking and awe inspiring.

Then there's me: 33, at home mother (something I never thought I would be able for, and there are many days I truly believe I am not cut out for this special needs Mom thing.) I once had a dream I would make films, write delicate tales from the heart, but lately my limitattions seem to reachthe creative prowess of organising a shopping list. Perhaps this blog will help unearth some of that craetivity.....hmm obviously not today.