Summer Lovin'

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

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!

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!

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!

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

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

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!