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.

Autism, the SICK and the SAD

What Bronchitis FEELS like!

Bronchitis. 

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 (www.autismspewage.blogspot.com/2013/02/utopia-my-personal-hell.html)   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. www.ireport.cnn.com/docs/DOC-942306 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:
www.ireport.cnn.com/docs/DOC-942306  

How do you break up with your kids therapist?

The school year has hit us full force. This Tuesday we begin our third week of a full time public school for both my boys (which is my excuse for not having written anything lately, don't worry I plan to get back on it!). J is doing well, as I predicted I'm having more issues with his "NT" brother than him. Long school days are blessing and a curse, the days are busy but quiet and productive, the nights are harried and busier and that's what brings me to this topic.

J's schedule is INSANE! I wake them up at 6:30am. We do breakfast, grooming and we're off to school by 8 (OK closer to 8:20 most days). I pick them up by 3:10 and we're off to ABA by 3:30. He has ABA till 6pm and then he comes home and we do dinner, grooming and the bedtime ritual. By 8 o'clock some days he's asking for bed. He has one day off a week after school (during which I try to get in a play date for "social skills").

I'm having an issue with Wednesday's. We started private OT March 2012, mostly to get a grant to help pay for the private school he didn't end up attending. He did need help with some things that OT's specializing in helping with. He has a lot of trouble with three point pencil grasp, dressing himself (zippers and button's mostly) and he does a lot body crashing. So even when we decided not to purse the grant I decide to keep the OT appointments going. The OT is closer to his old school and she had a slot right after school, that was then. Now she has no appointments that don't interfere with either school or ABA and we have to ddddrrrriiivvvvveeee forty minutes to get there (vs. coming straight from his old school). On days when he has OT, we have school, a short ABA session and then the OT. I begged for an appointment that didn't interfere with either school or ABA, but she just didn't have it. Plus the way our insurance is set up every dollar we spend on OT takes away from our ABA funds!

this is my idea of teeth gnashing.
Oh the agony

So after much hand wringing and teeth gnashing the hubby and I've decided to cancel his OT appointments but dam if I don't feel like shit doing it. The hubby's says to me, "well whats more important, OT or ABA?" Honestly its a clear choice, ABA! I know he needs more occupational therapy. I know he could really benefit from more time with her but I just can't do it! I'm so sick of the scheduling, gas money issues, the rushing, the driving. I just feel stuck. Truth be told with all the frustrations with scheduling I like the occupational therapist. She is good, enthusiastic and really knows her stuff. In the last four (almost five) years I've meet many, many, many a therapist and a good OT can be hard to find!

those two big cogs are my sanity our
budget, both being pulled in a million
directions, both essential to every
other smaller cog.

Tomorrow is D-day and I'm still reeling on how to do this (or truly if I should). My logical mind knows in the past we've relied on school OT (yeah and look where that's gotten us). I know it's hard on us in gas, time and my patience level (which is at an all time low these days). The hubby and I have always agreed to do everything we could for J while keeping our family in tact. Keeping our family in tact means keeping my sanity intact (which is a big cog in our family wheel) and trying to keep our ever so slim budget on track. These OT appointments strain both but I still truly wonder how do you break up with your child's therapist?  

When we left his private school I wrote them an email to tell them I wasn't re-enrolling him. There was a natural break where we chose to renew or not to renew every year but with OT it isn't like that, it is basically an ongoing service (at least in our world). So I've decided to go to his next appointment and let her know in person. I think that's the least I can do and I'm sure as a professional she'll understand (at least I hope so), heck it may be nothing to her. I know she has other families that want that spot. If I've learned one thing from having an Autistic child its that you don't burn your bridges with providers. I hope this OT understands, in this case it really is ME and not her, but who wants to hear that crappy break up line! 

REALLY, we love you as an OT. It's me, not you!