ELEVEN DAYS till I-D day!

In these previous posts that I've written about my upcoming nuptials (http://autismspewage.blogspot.com/2012/04/im-sick-of-being-autism-poor-and-i-want.html & http://autismspewage.blogspot.com/2013/02/death-taxes-autism-weddings-all-of-my.html. 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, entrée 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" (http://autismspewage.blogspot.com/2012/09/the-wedding-update-that-wasnt-nobody.html). 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 :)

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?

 

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.