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Wednesday, May 22, 2013

News Flash, no time off.......

My kids are both in school full time now. I spent many a pre-k days wiping buts and watching Dora reruns, praying for the day that both of my kids were in full time school.  I dreamt of going back to school, filing the "to be filed" box that is four years in the making, tanning, losing weight, getting a JOB and speaking to other adults on a regular basis. I had this crazy idea that I would have "time" for myself while the kids were in school.

News flash, nope, no time for me.

I'm sorry you need an extra roll of toilet
paper. We may need to discuss that?
I did start school online and but the majority of the time I'm still working towards the kids and mainly Jonathan's goals. Now, it's seems more than ever I've got my work cut out for me. Jonathan's inclusion classroom is being closed/cut. Our school
district has somehow screwed themselves monetarily and budget cuts are down to the marrow.

Inclusion is covered the IDEA act by the federal government but that isn't stopping our school board from cutting inclusion, eliminating teachers and aides and otherwise ignoring ESE student's rights. Worst of all the school's aren't telling parents. We were only told because our teacher understands the
commitment we have to our kids education.

So, where does all this drama and subversion put us? At school board meetings, at meetings with the Superintendent, writing letters to the Governor, posting online chat rooms, calling reporters, talking to other parents. It seems after the wedding, the universe decided I had a vacuum to fill.

As much a myth as June Cleaver!
So now during the day I try to accomplish these things along with all the regular mommy work and online schoolwork to be done. I handle EVERYTHING except making the money. With this school year nearly wrapping up I can count the days I've tanned, crocheted or done anything besides work towards one goal another on zero fingers.

For Mothers Day I got guilt and a sunburn

To my chagrin I saw many FB posts before Mothers day about mom's spending the day with their kids for mothers day. I know many of those moms didn't have childcare I understand that plight, BUT is it wrong to want to be away for "Mothers" day? If you can't get a break on "Mothers Day" when DO you get a break? Those motherhood-is-shiny-and-glorious posts accompanied by magical sunset photos remind me very much of another bloggers post "Don't Carpe diem" Personally, I wanted the day off more than any pesticide laden bouquet but you've got to love social networking, its a great way to impose/assume guilt and judgment without actually speaking to a person.

I spent the day today, away from my children. That is right for mothers day I took, bum-bum-bum, the day off. Well at least part of the day. I've had this kid free beach trip dream for about three years and between myself and my best friend, it's taken us both one divorce and this amount of time to get child care so we could go to the beach for ONE (half) day and have time to ourselves. Well, I'm experiencing the after glow of my first kid less trip to the beach in over ten years, wait maybe that's is a sunburn......

 It was extremely relaxing to go "restaurant" (Ok, McDonald's) and not worry about packing food my kids could eat, avoiding the ball pit, eating hot food without serving others, watching for the rogue fry indulgence, enjoying leisurely conversation without having my neck on a constant swivel aware of where my children might have gone too or what they might be into. On the way to the beach we spoke freely, using whatever language I felt like using at the moment without self censure worried that my words may be parroted at the worst possible moment, most likely to my child's teacher.

At the beach I actually relaxed. I didn't have to worry about rip tide, traffic proximity, the sting ray shuffle, organic heavy metals free sunscreen or my kids tendency to pee into the shore line twenty feet from people fishing (yes, that actually happened once).

Ah, I breathed in a few deep breaths. Those blissful moments of sun baked laughter, tranquility and shared relaxation are going to have to last before I go back under.

Monday morning begin holding my breath again for:

IEP meetings
Dan Doctor protocols,
Dan Doctor appointments,
Therapy meetings,
School Board meetings,
Teacher meetings,
Learning ABA
Food preparation,
Camp planning,
Doctor appointments,
Insurance hassles,
Florida Government bill research

and those are just the things related to Autism, not even regular mom stuff...................

Looking at all I do, regular and Autism related, beyond the "to-do" list of day to day list seems overwhelming.  So I will take one (half day, lol) to myself without feeling guilty. I will make more time to resurface and refuel (before I pass out and cause brain damage).


Thursday, April 11, 2013

ELEVEN DAYS till I-D day!

In these previous posts that I've written about my upcoming nuptials ( & Well, we are officially under the two week countdown, specifically we have eleven days till I-D day.
Oddly, this situation reminds me very much of when I was hugely pregnant. People have been projecting their expectations onto me for about the last month (thank god I don't have to wear a count down on my forehead like I did under my cotton knit blends when I was pregnant). I find these expectations funny because Dave and I have been together for ten years this August, yet people still feel compelled to ask me if I'm nervous. It's as stereotypical as requesting a belly rub or asking if I'm carrying twins (which is something people frequently asked me while I was pregnant, both times, baby had front).

The only thing I'm nervous about is paying for this shin-dig.  Since we are down to the nitty gritty (we have four days to get our floor plan, entrĂ©e selections and guest count in) we are just waiting for people to drop out. I just want this thing done and I really do feel that "the color of the napkins doesn't matter" ( Our compromise's have been many and great but it's still our best and most worthwhile shot to do this thing. Ironically being poor gives me a ton of control, but mostly because I've got to do it all myself (but ASD & regular mommies feel me here) what else is new.

Hey girl, I'm loving those legs!
Please don't misunderstand, I'm in a tizzy about getting the last minute details done. I've got a laundry list of shizzzz to accomplish. I need to finish the music list, dye my hair, cut my hair, get my boy's suits, get DH's suit altered and pressed. We have NO flower girl and don't have our ceremony planned AT all. I'm baking the cake and making the bouquets. Which has to be done, last minute, along with organizing our cumulatively crazy families (which is a major task in and off itself). That eloquent paragraph only covers a few of more PRESSING issues which are setting at the tips of my neurons. I KNOW more things will evitablely pop up. Considering in an average month I make time to shave my legs only once, all these extra tasks seem a bit insurmountable.

With that being said, I still don't feel too panicked. Before I even got pregnant with Jonathan DH (in nick-name only) and I were talking about getting married. He proposed officially when I was six months pregnant with David (not that much after our initial talks). Many tax returns and one Autism diagnosis later here we finally are, a little over six years later. So, to say I'm ready is a bit of an understatement

My thoughts are DH and I have already weathered some of the major issues most couples would split over. We've experienced a job-loss, eviction, and of course, illness of a child. The illness being Autism, the most debated, controversial and frustrating disorder to speak of, all this while dealing with all of J's bio-medical issues to boot. We are survivors of the great Autism statistic (supposedly 80% of marriages in which a child is diagnosed don't last) and we've come out whole on the other side. Believe me, I'm not tempting fate, but we are solid. Our backgrounds, morals and goals are the same and they all revolve around our boys.

So should you feel compelled to ask, I'll answer you now with a wry smile: don't worry about my feet, they are toasty warm :)

Thursday, April 4, 2013

reflections on Autism "awareness" Day

Each year for Autism awareness I try to do something "extra". Every year we participate in our local Autism walk, last year I did an interview with a local education television station where I was the "parent expert" and defended Bio-medical treatment. You get the idea, each year for Autism awareness day I try to go above and beyond living Autism and try to do a little more than I would normally do to survive.

And yesterday was Autism Awareness/Acceptance/Action day 2013.  This April has been a bit different. We are out of the private school that sponsors the local walk. I've been focusing on my own school work, learning Jonathan's ABA and the wedding is right around the corner. Autism whatever you want to call it day had crept on me. I had no plans to "do my share". So essentially I had a normal day.

I was out and about on my "normal day" taking care of wedding related tripe and I made some observations I'd like to share.

One of my errands was running to Publix, a Florida based grocery chain that carries more Organic goods and things we chose to put our purchasing dollars towards. As I was standing in line I looked over a women in the checkout line over from me.  As a former cashier I can tell you nothing will tell you more about a person than their grocery purchases. Being the nosy person that I am I looked over
the contents of her cart and spotted organic dairy milk and organic apple juice amongst other the items. She was white and wearing causal upscale yoga style clothes that looked like she might have put them backwards for effect. Still I thought smart momma, no arsenic in the apple juice, no RBGH in the milk, score! There was a white guy in front me wearing Goth clothes and unloading baby food while explaining to the woman paying for the items how much the baby ate at each meal. There was a woman of Mexican descent a few aisles over with three or four kids. The youngest was occasionally shrieking enough to startle me, the unshakable Autism mom. In short it was a bustling afternoon in a busy supermarket with shoppers not ten feet from me from all races and socioeconomic statuses.

Autism style
I suddenly thought how nice that these people get a normal life on what should be a somber day. It felt like shopping for groceries after your spouse has died, you look around and wonder how the world still continues to turn after your personal tragedy. You know, I've heard it said that parents of ASD kids experience stress levels similar to soldiers in battle. I think that in that moment I was
experiencing a bit of PTSD flash. I was disgusted by what I saw, which was nothing about Autism. No one in that supermarket was "aware" of Autism, let alone acting on this epidemic.

I'm the first person to say how much I love Publix's, like I said they carry a lot of things we need for the kids diets. I'm not blaming Publix's per see BUUUUTTTT I was in the progressive grocery chain, right? Publix's, the one that hires people with disabilities deliberately, carries quality good other chains don't and just seems to be a more people oriented company. If they aren't celebrating Autism whatever day, then who is?

Hold still while I ram this breast cancer awareness up your nose!
When I think back over my travels yesterday after visiting Goodwill, Winn-Dixie, Publix's, and Petland I can't remember a SINGLE mention, piece of merchandise, or other blip on my ASD radar. This has been a source of frustration for me for awhile. In October (the month of my Autistic son's birth) I'm bombarded by pink. Pink Kitchen aid mixers, pink coffee cups, hell I'm sure they have pink breast cancer dildo's out there.

But yet the most prevalent childhood disorder, now affecting one in fifty children, doesn't warrant a SINGLE piece of merchandise! really, REALLY!?!

I've asked this before and I guess I'll have to ask it again, when will people wake up? If one in fifty doesn't rock your society what number will. Does it have to be one in ten, one in five...............when?


Tuesday, April 2, 2013

well there goes the neighborhood, and the ABA

Jonathan is doing well, maybe too well. His progress has put us at a "classic" Autism crossroads. This crossroads is one I had serious doubts we'd ever reach so believe you me I'm a bit stunned/elated/devastated to be here. We are being weaned off from services. This is the new Autism crossroads, doing well enough to be weaned, terrified to be without support.

Jonathan's hours at his last ABA insurance approval period in December were cut. Of course I argued for more hours but in all reality I knew he didn't have the behaviors to justify the hours. Jonathan is losing his Autistic behaviors. His ABA at this point is centered around intraverbals, fluency and other ABLLS skills unrelated to education (for insurance purposes they cannot teach educational skills that is the educational systems burden and trust me that is a blog for another day). His "behaviors" or lack thereof are tracked via data during his therapy sessions.

Jonathan's therapy team uses a testing system called the ABLLS .
imagine this, with the majority of the boxes filled in :)
The ABLLS is essentially a list of skills covering ages zero to eight. Jonathan is seven and has nearly mastered all the categories' his therapist can ethically cover in therapy. One of his therapists that I truly trust has told me she thinks he will masters the remaining skills by the time he turns eight. Jonathan also isn't terribly behind his NT peers as far as school work. Jonathan at 7 is doing Kindergarten work. Since he was a fall baby that means he's only a year behind. Next school year they agreed to retain him. He'll get another shot at learning those first grade skills. This will put him back a year but he'll be on skill level and his teacher and I have agreed to keep him on a regular diploma.

To change his statistics (screaming, behaviors etc.) with therapy I decided we should start doing in home therapy. When you change the setting of his therapy to a more chaotic distracting arena his behaviors tend to flare. Also this way I can learn how to do the therapy with him and he can replicate successful skills better in a classroom environment (which in a way is like our home, distracting, noisy and not one on one unlike the church he was doing therapy at). 
these two therapy environments.

There is a pretty drastic performance difference between

One of his newer more blunt therapists said to me, "ultimately the parents are the therapists. Even if you are doing it right seventy-five percent of the time that is still seventy-five of the time vs. zero percent of the time." I've always been afraid of doing it wrong and making his behaviors WORSE, which frankly when we started ABA was a terrifying prospect. I've always done everything I could to support the therapy team. I've always read to him, taken him out in public and tried my very best to follow their advice. After all ABA is a resource not to be wasted. We are thankful for our services and want to get as much out of it as possible for Jonathan.

Well now things are different, it's time for me to learn. I don't know why the therapist's advice stuck this time, why I got it this time. I've heard that phrase a thousand times, "the parent is the real therapist." I used to hate that saying, it felt like a brush off. It was the catch phrase of a million different agencies designed to cut cost by cutting therapy ours. Our circumstances are different now obviously. I now have a fuller understanding of ABA after having seen many, many, many hours of it. Maybe it is that I'm less afraid, maybes it is that we found an ABA company and therapy team willing to invest in us and we shall invest in them in return.

Our next ABA renewal will cover maintenance therapy and parental teaching. It will begin in August (of this year). I always knew ABA couldn't last forever, supposedly our insurance plan only covers three years of ABA maximum and we are coming up on our second year this summer. Its a bit strange, somehow I feel success has crept on us a bit too soon for my liking .

These very measurable goals speak to the depth of his recovery. BUTTTTT I worry. Jonathan just isn't verbose. He still doesn't talk or act like an NT child. He struggles for words when asked direct questions and defectively talks about his current obsession (right now it is bugs and reptiles) when
I don't want to count to twenty today, so what is a Goliath Bullfrog?
asked things he doesn't want to answer or cannot answer. His struggle for words is written all over his face. His younger brother is a talker and I unfairly compare them, not out of the desire to change him but to give him his best possible chance at an independent life. To a degree that fate is determined here and now, with this talk about his diploma talk, with his inclusion classroom. It still amazes me that children are given up on at any age, let alone when they haven't made it out of elementary school but it is painfully common.

So again, that reiterates my point, this is dilemma we are happy to be in but nervous about. I guess like anything else in our lives, we'll see. This may mean putting midwifery school off for another year but we've fought this hard for so long. As always like DH says we will make it work for Jonathan.

Thursday, March 21, 2013

DON'T PANIC! it's just worse than we thought, or so we think?

So yesterday the Autism cosmos was rocked by yet again, a NEW set of numbers. One in fifty children ages 6-17 has Autism, encompassing all forms of the disorder from mild Aspergers to classically severe non-verbal Autism. As usual boys are four times more likely to be diagnosed than girls. A interesting note about this "revelation" is that it doesn't even include kids under six years old. Which is a pretty typical age for diagnosis.

I read five different online write ups about this new diagnosis rate and they all say the same thing. DON'T PANIC, DON'T PANIC, hey did I mention, KEEP THE MOTHER EFFER CALM! Each of the articles disputed the study based on the fact that it was a phone survey, answered by parents and not providers or school districts. Stupid parents, everyone knows they totally over diagnosing their own children and that schools and doctors have ALWAYS been totally on top of the Autism epidemic (please mentally insert sarcastic cough here).

Now, lets do a little critical thinking. First the articles state "Health officials say the new number doesn't mean autism is occurring more often. But it does suggest that doctors are diagnosing autism more frequently"
(of course they didn't interview doctors so how does that work?) then they say "Still, CDC officials believe the survey provides a valid snapshot of how many families are affected by autism, said Stephen Blumberg, the CDC report's lead author". I'd say that is a pretty contradictory statement. Is this study indicative of rising Autism rates or not? Do we chose to believe, GASP, that parents are capable of accurately reporting what is really affecting families, pish-posh I say!

My thought are, well lets see? What if the 1 in 88 is the right number and not 1 one 50? Well does better diagnosis rate still account for the drastic explosion of new cases of Autism? Is the 1 in 110 statistic right? At what point are we going to look to something OTHER than better diagnosis? At what levee are we going yell FLOOD!? When do we PANIC?! When, really, it's a serious question? When will the CDC, AAP and other organizations think it's time PANIC? For me, it was five years ago when my son stopped talking and couldn't poop to save his life (or mine), PANIC hit me dead in the gut.

So many families are drowning in a sea of Autism PANIC, even if you dispute this newest number you cannot dispute the graphs dire freakish skyward climb. So please, critical thinking people, it's time to PANIC!

If your interested to know, they DIDN'T call and interview me for that study.

Here are a few of the web article I reviewed: Peruse with a critical eye.

Tuesday, March 19, 2013

Autism, the SICK and the SAD

What Bronchitis FEELS like!
I'm up late. The spirit is willing but the flesh is weak, not weak enough apparently. Probably due to the steroids I'm now taking. You see I'm battling my second bout of Bronchitis in three months and this latest stint has lasted just over three weeks. I've spent three weeks at home, hardly leaving and doing nothing but the basics, REALLLLLLY getting our money out of our Netflix subscription. I'm having a bit of cabin fever, ok I feel like a banshee is wailing inside me urging me to leave the confines of my house. Unfortunately a round of "I know where your ticklish" leads to coughing fits for myself and one half of my brood. My youngest is sick too, fun.

My time on my sick couch got me thinking, why have I become so susceptible to colds lately? The obvious answer is stress. I'm planning a wedding on a shoe-string-strand budget. I'm trying to be involved at my children's school. I'm trying to understand and implement J's ABA programs better at home and in general. I'm trying to educate myself to become a birth assistant. I'm also doing a full time online college course. Ideally I would like more time to advocate for Midwifery and Autism but it seems I'm just making it through the daily "too-do's" to enable my families existence.

Thank God, we don't have a dog!
I have too much stress, painfully obvious, I know. Over this last bout of yuk I cut back. I didn't blog, stress grades, deal with wedding stuff and yet I still remained sick. So again on my sick couch I began to think about what was keeping me "down". People may read this and think yeah  she's nuts (nothing new there, and again MY place to vent, so think what you will) but I think I'm sad about Jonathan's Autism and the world in general.

Alex, chained and medicaided. 

As if my last blog post couldn't say it more clearly (   I don't think people with disabilities get a fair shake in this world. Some would argue that is natural selection. I would like to punch those people in the face. I carry around with me the knowledge of what this world offers people with no defense and it scares the hell out of  me. Just this week I read about a mother taking her fourteen year old Autistic son to a hospital because of distended bowel and gut pain. They locked him in isolation, shackled him to the bed and called the Department of Children and families on her! Simply because she wanted proper medical treatment for her child. SERIOUSLY TERRIFYING STUFF!

It really makes me think, what if we as a people could see the forest for the trees? What if we stopped injecting known neuro-toxins into our BABIES, stop feeding them garbage that was made in a lab and not grown in the soil, stop treating poison as if it were food, stop spraying poison on actual food? What if every person could stop taking money and rationalizing and justifying the essential nature of what is right away? If every person actively decided to chose to do the right thing, not the simple easy thing, but the right thing? What would our world be like?

It seems to me that some people are essentially greedy, deluding themselves that "their" decisions don't matter because its easier, cheaper and more convenient to not pay attention, give a dam, try or care. Looking at Alex Spourdalakis is hard, so why do it? With every "soda-pop" purchase, with every unquestioned medical procedure with every dollar given to a useless charity you reinforce a system that poisons more and more innocent children (and some adults too) everyday. The simple acknowlegdement of that statement just made my T-cells drop.

Please don't misunderstand, I'm happy. I have two beautiful boys. I'm working towards my goals. We continue to be blessed to find the right people and resources to help Jonathan on his journey to recovery. I have a supportive spouse who encourages my "down with the man ideology". My moments of joy are unearthly. Every funny phrase J gives us is a miracle. Every moment of wonder blossoming on his face is our universe. Every game of tag between bothers is to be cherished. I live in these moments.
THESE moments!

But this cosmic joy isn't without a price tag though. J's autism is the cost. We pay the price. So who gets the benefit? Well I have my theories. Even with that said we are among the lucky few, the informed doers who keep trying but what about kids like Alex? I guess my point is I'm sick of being sick over being sad about Autism. I'm sick of the system that allows the helpless to be hurt.

First DO NO HARM! Medical community you are failing!

Please see this website to learn more about Alex: