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  

Utopia, my personal hell

I must admit, I worry about the end of the world. Not in a train-in-the-dead-of-winter, stock can goods, Doomsday Prepper kind of way but I would be lying if I said those scenarios it didn't haunt my consciousness.





As evidence of my subconsciousness activity, last week my fears played a staring role in my nocturnal picture show. I had a dream about after the apocalypse (unspecified in nature). My family and I were living in a concrete high rise horticultural structure, utopia right?

In the dream Jonathan and I were strolling through the roof top greenery. As in any good utopia fantasy we are wearing whiten linen, he is hugging me and giggling while I poke him in the ribs for a good tickle. Suddenly a blaring alarm sounds and he runs from me panicked. I frantically try to catch him on his panicked descending route. He is a mere fingers breadth beyond my reach when I realize "the colony" is trying to separate us. "The colony" is trying to kill Jonathan because of his disability. I'm a reproductive female and he is a resource suck, thus the separation and his subsequent murder. Thankfully my dream abruptly ends before the anticipated ended leaving room for the hope that I reach him in time to forestall his execution. Maybe I've seen the Postman one too many times but this fear for my family is real.

I awoke from this dream horrified and reminded myself to listen to my mommy instincts. I guess my point is Jonathan vulnerability is terrifying to me. In even in my dreams I'm shielding him from himself and society. Living in Florida we have to worry about the typical tragedy of hurricanes, flooding, Forrest fires and the general craziness that living in Fl. entails (think ballot counting, retiree driving, and face eating zombies).

I've seen Jonathan become a mess from eating a (yes, singular) chocolate chip cookie. How hard would SCD/organic  food be to come be in a week long power outage? How long would my personal sanity hang on without ABA therapists or school to cage, I mean captivate my children?

Now that I've got the yuck out of my mind I'm going to bed, thank you Internet for being my captivate audience.

The wedding update that wasn't (nobody really cares about the color of the napkins)

In my Linda's lament style handwriting my blog ideas stare up at me from my kids reused composition notebook. 1.) WEDDING UPDATE:  the title seems to glare up at me from the top of the page. If you read my blog you know that one of my first posts was http://autismspewage.blogspot.com/2012/04/im-sick-of-being-autism-poor-and-i-want.html was about our lack of funds to get hitched. The only real news about our wedding planning, is that there is no news, and truth be told that's good news! We were granted a stay of execution. In other words we got our venue to bump back the date to after our tax refund. That was a bullet dodge of Matrix proportions!

So I'd like to write about my brothers recent nuptials. The only other person on this earth with a nearly identical set of DNA to mine was lucky enough to find his mate. I'll admit that when I found out he was getting married BEFORE me, my little brother, I was jealous! That lasted all of five seconds and then the joy of his growth and happiness filled me with glee.

For his wedding, he gave us a wonderful gift. The gift of NOT traveling with my father and two children (yes that would be five passengers in a car designed to fit four). Even though he lives in Tallahassee Fl. he decided to have the wedding here (in central Fl.). He said it was a meeting point between all the guests, surrrrrrrrrrrreeee. All that meant for me was not having to take my Aspie dad, Autistic son, ADHD kid and PITA hubby on a four to six hour car ride. I all had to do was show up. The boys were even asked to be ring bearers. I thought that very brave of his honey, she is a speech pathologist. Side note, my kid with Autism that maintains ninja like silence when you think hes snuck out of the house but is really in the closet wouldn't shut up for my beloved brothers wedding, it was FUNNNN getting constant side glances from her granny.

Take away the "hilarity" of the Giraffe outfits and you've
got our drive up to Tallahassee

Since I live close to the venue and I'm (*sort of*) doing wedding research myself I expected many calls, but no, true to form my brother and his bride needed zero help from me. I was both thankful and sad that I couldn't be of more assistance.

The day came and the venue was beautiful. He had a sunset beach wedding. At the reception he and I spoke a bit. He told me how he'd built the arch way and the table toppers out of a neighbors bamboo and spare bike sprockets. He was very DYI before it was cool. He grabbed a napkin and said "everyone worries so much about the color of the napkins but who really cares now". I looked around, everything looked perfect and beautiful and no one was looking at the napkins.

I hope to take that lesson into my own wedding planning. I hope to remember it will be alright even if it isn't. I have a new wedding motto, "nobody really cares about the color of the napkins".

The "F-word"

I'd say she was caught a bit off guard?

This is something that can only be appreciated by another caregiver of an ASD child. J has started saying the F-word. Let me clarify. Monday J got mad at his ABA therapist and said "F&*k" and of course she was shocked and he caught her staggered face and stammering reaction. When he caught that reaction he went into to repeat mode. While she brow beat him into practicing hand writing he mumbled over and over under his breath "f*^k, f*%k, f#$k, f*^k". At that point she had steeled herself to the word that shall not be named and ignored the behavior. On this incident I didn't get the full details because I didn't pick him up from therapy that day. I got the abbreviated husband version of events,"she told me he said f*%k. No, I don't know why". I decided not purse it until it became problematic.With ASD you've got to pick your battles.

The next day I get a note from his school teacher, Jonathan was on orange, aka defcon four on the school behavior chart! He said "f-word" to his teacher, not THE f-word but the phrase "f-word". I had to read that note a few times over before I completely comprehended (and was sure of) what he actually said and I'll admit I laughed a bit.

my punishment was a bit more progressive
but you get the point.

Anybody else ever read the Secret? Dam me and my anti-intentions! What you resists persists, what you resist persists! So that's why my kid has Autism (side note, wonder if they've ever done any studies on that idea, that may be a bit more useful than all the current genetics studies they are conducting now, again). Of course I sat down and spoke to him about it. He lost computer time, his giant precious moments eyes teared up and he ran to his room blazing with fury and slammed the door as only most angst ridden teenagers (and ASD kiddos) can. I emailed the teacher apologizing and letting her know that he would be punished. Of course she was understanding and thankful I'd followed through at home. She even placated my parental naughty word guilt by saying he wouldn't be the first and won't be the last, thank god teachers are people too.

I got to witness this fun little quirk myself  yesterday while working on his first bit of homework. It was another hand writing task, apparently those are his favorite! As I sat him down and got him started when I heard him say "f-word, f-word" in a clear concise (six year old) voice. Hearing he's been saying it from someone else and hearing him say it myself are two totally different things. I managed to play it cool and he stopped saying it with zero intervention on my part.

So my question is where did he get the term "F-word"? Like I've previously written in the post growing up with the word retard  (http://autismspewage.blogspot.com/2012/07/growing-up-with-word-retard.html) that isn't a word bandied about in our house. One of his ABA therapists speculated that someone said to him don't say the"F-word" after he said f*#k  and like your typical (pun intended) Autistic six year old he took them L-I-T-E-R-A-L-L-Y. So now the "F-word" has become a curse word is his mind. In my house the "F-word" and f*#k and ALL variations of said vulgarity are now banished.

Even though he has Autism and can be expected (by DSM-IV criteria) to say and do things that are socially inappropriate I still feel responsible for what comes out of his mouth. I'll never forget how often my parents told me that my behavior reflected on them (of course at the time I didn't care). I think its hard-wired into to our DNA to want our kids to behave well as a reflection of our parenting abilities. While I hope J will develop this skill I have to accept that he may never be able to tell socially appropriate words from socially unacceptable words.

Another bittersweet Autism moment brought to you from my life. "F-word" it, I'm out. :)



our fourth of July normalcy

I had a pretty interesting day on July 3rd that gave me a bit of inspiration. I spent that morning baking. My kids have been on specific carbohydrate diet for over four years, so typically I spend one day a week doing  batch cooking. Today's "to do" list included: Sweet potato cake, Lima bean mash, strawberry applesauce and squash chips.



It's 83 degrees in my house and I've got to BAKE?!

As I hustled around the kitchen preparing for the busy fourth of July weekend my phone rang. Praying it was the AC guy since our air hasn't been working well. I answered in my most cheerful false voice (that didn't belie my sweat soaked irritation). It wasn't the AC but another parent from J's previous private school.





I've been trying to set up a play date almost since her child started. He is a sweet boy with very few real "behaviors". So I was happy to hear from her, after all this is supposed to be the summer of play dates. She had just gotten back into town and made some small chat with me. We step up a date to go to a local splash park. One thing I love about splash parks is that EVERY kid is running around flapping their hands and screaming in absolute ecstatic joy, so typically, I don't have to have the Autism "don't ask, don't tell policy" in effect. After that I tried to get off the phone when she blurted out, "I need to ask you something, if that's okay". "Ok, I say ask away". Honestly I can't shut up about Autism.

She proceed to ask me about J's development. When did he develop speech, did he have a regression, when was the regression, how did we end up at the private school? I calmly recited the list of answers I've given SO many times. She would give me her sons counter points in a quavering voice. As we finished up the Q & A session she confessed to me how great it was to talk to some else about this and how her family wasn't supportive. Her heartbreak was nearly palpable. She never really got a diagnosis for her son or doesn't remember it (she told me she'd have to look through her paperwork for it). Which I find both heartbreaking and odd. I remember to this day, nearly six years later, the day we got the diagnosis, THE DAY! It's my personal equivalent to the Kennedy's assassination or 9/11, you just don't forget THAT DAY. 



UMMMM, I forgot? Not likely

We chatted on a bit more. I told her about a local support group and we finalized plans to meet. 

I used the play date excuse to recruit another mom who I like and don't get to see enough to wrangle her into coming to the play date. Her son and J had been in the same classroom on and off for over three years. We talked about the summer and how the kids were doing as a result of the change in schedule. J is getting louder (lots more screaming). Her son has is having difficulty too. Also since starting summer school he started shunning all peer to peer interaction by putting his hands up and yelling "NO" when a peer approaches him. She's worried about his placement for next year. His behaviors are getting to the point that he cannot continue to function well in a academic classroom. After that we discuss the ABA that he just got approved for, a whole whopping eight hours. She's trying to get it done at the school but they haven't placed him with a therapist, one month in on a six month insurance approval (that she fought tooth and nail to to get!). Then we talk about the dental work her son has to have done, there is one dentist that takes their insurance and that is willing to put him out. Of course it's far out of their way, inconvenient and it is terrifying to have him put under anesthesia for a simple cleaning, cavity  fill and set of x-rays but what choice do they have. 

They both sound like I felt when I wrote "it 10 am and I'm exhausted" (http://autismspewage.blogspot.com/2012/07/im-exhasuted-and-its-only-10am.html). I feel like I did what I could for both. I was a shoulder to cry on and someone to complain to and bounce ideas of off. I gave them what information I thought would help and even offered to make a few calls myself.

After that my day went on. I finished my cooking, got my kids ready and went out to my best friends impromptu Barbecue. I have to say it was wonderful. All the kids played together, J and her youngest spent most of the night "fighting" aka wrestling. They cooked on the grill, keeping my kids food separate. The great American organic hot dog. All the kids ate together never thinking to question why my boys weren't eating the same things they were. Then we did sparklers which was a bit scary, J's doesn't seem to fear them, its a bit of a moth flame situation there. After that they set off a bunch of really beautiful fireworks, everyone sitting on the drive way. It was Norman Rockwell (of this era) normal and absolutely blissful. 

I just have to take a minute and to acknowledge how grateful I am for that. J is by far not neurotypical but he's not excluded or treated differently at this point either. Our friends and family have never turned us away or not respected our treatment modes or scoffed at our ideas. I know that that support alone has helped us as a family and helped him in turn make the significant progress he has made. After seeing so much sadness, so much downtrodden aloneness I feel grateful for the small group of people we have. I have a lot of days that are like "its 10am and I'm exhausted" (http://autismspewage.blogspot.com/2012/07/im-exhasuted-and-its-only-10am.html) but I guess the great thing is that ALL the days aren't that way. I don't feel totally adrift, heartache palpable to a near strangers. I'm not lost with nothing to do, wallowing in the choices I should make. In fact I've got TOO much to do. I guess it's just another Autism dagger that cuts both ways, as long as there is something to do, well you've got something to improve upon and that means that improvement is possible.