I am the 53% AND the 99%

Dear 53%:

I am one of you. My parents came to this country with nothing and built a small property management business that allowed them to save money, send their children through college without student loans. Thanks to them, I have a nice little nest egg saved up for retirement and have been able to start a nest egg for my son's college education.

I work for my parent's business now and do everything from painting walls, refinishing kitchen cabinetry & tiling backsplashes, landscaping, advertising vacancies & processing applications, tenant correspondence and managing handymen for those projects that I don't have the skills to do myself. My husband works in the financial sector. He doesn't make a huge amount of money at it (well below $ 75K) but between his gig and mine, we do okay.

I am also one of the 99%. My husband has been out of work for months. He looks for jobs everyday - scours the HR pages of companies in his chosen profession for open positions, sends out resumes, utilizes his networks with former associates to find new job leads, follows up, makes calls, etc., So far, nothing. We are getting unemployment benefits, but my husband is climbing the walls. He doesn't want a government check; he wants a job.

Furthermore, the industry sector ( mortgage brokerage for multifamily housing) he worked in has had a symbiotic relationship with Fannie Mae & Freddie Mac. When the two institutions go away (and they will) his sector of the the financial industry will dry up too. This is direct fallout from the shennanigans of the wall street that spurred the Bush bailout of 2008. His job was pretty specialized and he is not sure how to make his skill set translate to a job in another part of the financial sector.

I have some signifigant health problems that require taking medication daily. COBRA is unbelieveably expensive (we're looking for cheaper health insurance) but going without is simply not an option. Without it, an unexpected injury or illness could wipe us out financially. My medications are not cheap, but without them I couldn't function.

I've begun growing my own vegetables and raising chickens for eggs. This is not only because groceries keep getting more and more expensive. It's also because I hear about more and more people sickened by tainted meats, fruits, and vegetables. I feel like I can't trust the food supply to be safe for my family to eat.

I have a son who has been diagnosed with a receptive-communicative language disorder, sensory processing disorder, and autism spectrum disorder. He gets treatment through the local school system and the local regional center; these have helped tremendously. We are grateful that these services exist, but we worry about how state and federal budget cuts might affect us in the future. In the meantime, I volunteer at my son's school as much as possible. This is as much about helping my son's teacher & school as it is about trying to be available to him when he is having a hard time. He needs a full-time classroom aide, but the school cannot afford to provide him or any of the other special needs student with one. The teacher has her hands full trying to keep 22 five year-olds focused and out of trouble. I am one of many parents, mostly women, who keep the school running by doing admin jobs that cannot be covered by the school budget.

We are not free loaders or loafers. My husband and I been paying taxes we were teens; both in the form of income tax and payroll taxes. Any local, state or federal program that my family is currently availing themselves of are programs that my tax money has been paying into for decades. I am pissed about seeing the budgets of these programs gutted, while uber-mega-rich people and corporations keep getting tax break, after tax break, after tax break. Agencies the public relies on to keep them safe - FDA, USDA, EPA, OSHA - have been neutered by the power of lobbying groups who get to write their own rules by tossing loads of money at politican's election campaigns and calling in favors later.

Here's my 99% demands:

I want to have a greater voice in what my tax money is spent on.
I want to see big money taken out of elections, whether that be corporate, union or the private funds of the mega-wealthy
I want to see the old regulations on the financial and business sector put back into place, with new ones added as necessary.
I want to see the agencies that are supposed to protect the public - FDA, USDA, EPA, OSHA - fully funded and run by people who are on the side of the little guy.
I want to see the hedge fund tax loophole closed and the tax code reformed to make sure that everyone is paying their fair share.
I want to see people put back to work fixing and updating our infrastructure.
I want to see more tax money invested in our school systems, especially in math and science programs.

Are these crazy pinko lefty demands to turn America into a socialist state? I sure as hell don't think so.

It just isn't right to be this excited about my backyard ...

Stepping away from the heaviness that is parenting an ASD child in a USD ( _ Unified School District) world, my garden has suddenly become a very exciting and satisfying place for me to be. One of the chickens (Rosie) is laying - one egg every other day - and since my husband helped me put up an (12 x 7.5 x 6 ft) enclosure for the "big girls", the rest of the yard is beginning to bounce back. The grass is growing again, the flowers are making a comeback - chickens are wonderful for the soul, but hell on the flower beds.

Thank the FSM for Daiso and Ichiban Kan's super cheap bird netting (@ $1.50 a pop)! I've been able to use the same 9 x 3 ft lengths over and over again; this time to carve out some protected space for a bee-friendly flower garden. I'm hoping that by October I will have some borage growing again.

Bit by bit, I'm ripping out yet another patch of plastic weed blocker and putting down layers of compost, straw, cardboard, & wood chips. These areas have not been netted off; the chickens are specifically invited to dig, scratch & root through all of it This fall, I will be planting cabbage and other shade loving winter vegetables in these spots thanks to the planting bed services of my tiny, omnivorous, feathery dinosaur friends.

We Need Resources - They Need HELP

This is a really good article on parenting a child on the autistic spectrum.

Our son's ASD is even milder than that of the author's daughter. He is charmingly quirky and easily passes as neurotypical most of the time. He is bright and and more than capable of meeting the academic challenges of the grade he is about to enter even though he has some problems with paying attention. He is verbal, albeit challenged in regards to his capacity for reciprocial conversation and expression of his internal states. He is social and interested in making friends with other children, but has a hard time reading social cues and understanding appropriate behavior. He tells me he loves me several times a day, and is so affectionate that is is a little overwhelming at times. However, finding the internal and external resources that our child needs to thrive is not easy, and sometimes there are moments when we are challenged and pushed to our limits.

The most recent example was two days ago when he lost a magnetic number 7 that he had placed on one of his toys. He could not calm himself. He was not satisfied with another magnetic "7" - it had to be the one he lost. He was screaming and kicking, hysterical to the point of being unable to breathe. I was irritated to the extreme. I was in the middle of a project that I wanted to finish up ASAP. I found myself resentful of both my son and my husband - why is he making such a big deal over a lousy little magnet? Why are you asking me to drop everything to help you find it? Let him cry it out - he isn't always going to be able to find things he lost, he needs to learn how to tolerate disappointment and regulate his own emotions.

Finally I begrudgingly gave in and joined the search. My son was hysterical to the point of being barely able to breathe. He seemed to be beyond understanding the questions I was asking to help him retrace his steps - do you remember when or, where did you last saw it. Finally I found it in the last place I remembered seeing it. Calm was restored, but I could see what the ordeal had cost my son. He was exhausted and needed to lay down and watch a favorite video to regroup. As for my husband and I, there were apologies to make, "I'm sorry that I snapped at you." I'm sorry that I had to interrupt you." "Are you okay?" "Are we okay?"

Our baseline is "contained chaos". Quite a bit of our furniture, bedding, bath and kitchen accessories have been commandeered by our son's to build robots and trains. Our house is an obstacle course at the best of times. Having an orderly & serene home is a distant dream; cleaning is sisyphian task that is undone as soon as it is done. Tasks are frequently interrupted in order to "put out fires"; and as a result, are sometimes impossible to finish. The seeming futility of it all frequently depresses me. Several times I day I find myself muttering, "this is why we can't have nice things." Finding the right educational and therapeutic resources can be a maze of bureaucratic red tape.

That said, we've got it pretty good. Other parents we know, have it much, much harder as we do.

For some, their children are non-verbal and extremely anxious and phobic. Some of their children have toilet training issues. Some of their children have violent tantrums, or require assistance dogs to prevent them from spontaneously running away for no apparent reason. Some of these parents wonder if their child have any emotional connection to them at all, or whether they will ever say, "I love you". For some of these parents, their kids rarely get invited to the birthday parties of neighbors and classmates. For some of these parents it is necessary to retain the services of a lawyer to compel agencies who are supposed to provide their child with resources to do their fricking job.

These parents are trying to keep their family and household functioning and intact with very little in the way of outside help. They feel guilty for neglecting other children and spouses. They try to put on a brave face while inside they are drowning in a sense of hopelessness.

As the writer of the blog post says:

"We need compassion, understanding and the tools to teach our girl to fly.

Our neighbors need HELP.

The need it NOW.

They need answers.

They need services for these kids – for themselves. They need a place to turn. They need a strategy – short-term, long-term, the distant future. They need a break.

Too many of them are living under siege."

Blog-wise, I'm a Total Slacker

Seriously, it's been more than a year. In my defense, I've been working on remodeling my kitchen, ferrying the kidlet to special education classes and social-sensory therapy groups, getting into the whole "Urban Homesteading" thing (including chickens!), traveling to Ireland for a wedding, and so on and so forth.

Still, I think it's time to start this thing up again. One, I'd like to track my amazing kid's progress in his treatment for autism spectrum disorder - he'll be entering a regular kindergarten class this fall instead of a special day class, he's becoming much better at verbalizing his feelings, engaging in reciprocal conversations and creating stories. He's learning how to engage in reciprocal play with other children and developing good social skills. In other words - he's blossoming.

Secondly, it's fun to talk about all the old-school housewife-y stuff I'm doing. I am enjoying the process of learning skills that have been lost to the last few generations - growing my own vegetables, raising chickens for eggs, basic home repairs & DIY projects, to name a few. It feels GOOD to be learning how to be self-sufficient. Having concrete problems to solve and daily physical tasks to do is also incredibly balancing and calming. Going outside and getting my hands dirty at least once a day has been great for my mental health.

It's also a feminist issue - caring for the home and family is good, honest work, but it is also often lonely, thankless and distained by people who should know better. Over last few decades, the feminist movement hasn't done a particularly great job of celebrating and defending home & family centered work, but they have done a far better job of it than most people in the mainstream realize.

Lastly, (deep breath) it has been suggested to me that I should write about living with a mental illness as well as my experiences with the mental health system as both a worker and a consumer. I am somewhat reluctant to do this because some of my family members are uncomfortable with the idea of me being so public about my own experiences. I am also nervous about potentially being a target for judgement, hostility and rejection.

The reason I changed my mind is because of a conversation I had with my friend Lisa, who recently lost a friend, Baird. He had been suffering with a psychiatic illness so intense that he alienated most of his friends and had ended up homeless. She spoke of feeling scared of him in the last few months of his life and after his death feeling guilty about not helping him more. We talked about how hard it is to help someone when you don't know where to take them for prompt treatment when they are in crisis. How hard it is for friends to know how to work together to help a friend in crisis. How hard it is to know what to say to someone who is on finally on medication and are once again stable and functioning, but dislikes being on medication and wants to get off of it.

I told her that medications can really, really suck; not just because of the numerous side-effects, but because you feel like you've lost a part of yourself that you really valued, namely creativity. I remarked that, in my experience, that the "good parts" of you do eventually come back - it can just take a lot of time - and that it is unfortunate that there isn't enough emotional support out there to get people through that particular rough spot on the road to recovery. Lisa said that she wished that I could have met Baird and talked to him about my experience of living with a mental illness.

She then said what I've heard so many times: that I should start blogging about my experiences, that what I have to say could really help people. I'd be nice if what I write could help someone. Sadly, I haven't always been as successful at helping people as I would like. I too lost a friend who had the misfortune to be both mentally ill and an alcoholic. Me and many of her other friends and loved ones worked very hard to save her, but she was unable to accept our help. She is still very much missed.

So, I'll try to share what I know, with the caveat that IANADOATT (I am not a doctor or a trained therapist), just someone who has experienced a few things. If it helps, great.

Yet Another Letter to Smockity About the Library Girl

Dear Smockity:

I read about the dust-up regarding your encounter at the library with an autistic child. I also had a chance to read the original post on Google Cache. It hurt and I'm having a hard time not crying right now. I know that the post is several months old now and you're probably sick of hearing about it.

My almost-four year old son was just recently diagnosed with an autism spectrum disorder. You wouldn't know it to see him ... most of the time. Most of the time ... he is cute and charming; his sunny disposition causes old ladies to smile and the ovaries of young ladies to twitch. He's creative, bright, enthusiastic, full of wonder and in love with the world. This is who he is... most of the time. Then there are the bad days. Yesterday was one of them. I got the old "side-eye" from people as we walked along with him shrieking, thrashing and hitting both himself and me.

Believe me, I know that from the outside he looks like a spoiled brat. From the inside, I know that he is experiencing a terrifying runaway train of emotion that he can no longer control, in response to having his expectation of what will happen next derailed. I know this because I remember that feeling all too well.

I was diagnosed 31 years ago at the age of 11 with sensory processing disorder. If the child I was then was diagnosed now, I wouldn't be surprised if the diagnosis was ASD. I remember the feeling of drowning in a tidal wave of emotion. 80% of the ferocity of the tantrum was sheer terror at the overwhelming, unnameable feelings I had inside. Sometimes, I thought I was dying. While this was all happening inside me, my mother would often be spanking me, telling me what a bad child I was and how much I was embarrassing her. Once she asked God out loud what she had done to deserve a "retard kid".

When my husband and I were trying to conceive, I prayed, telling God that I would welcome and love any child He sent me. I was both overjoyed and terrified when I found out I was pregnant. What if my child was like me? Turns out that the child that God sent me to love is a lot like me.

When you see someone like me seemingly coddling a disruptive kid, know that I am not trying to reward bad behavior or cater to the whims of a spoiled brat. I am trying to help my child rein in that runaway train of terror. I am comforting him, reminding him to breathe. I'm trying to teach him survival skills.

I've tried "time outs" in his room - they terrify him and make the freak-out even worse. I'm ashamed to say that in several moment of exhaustion and being at my wits end, I've given him a swat on the hand or butt once or twice. That just seems to add confusion and a sense of betrayal to the terror he was feeling, and an overwhelming sense of shame and inadequacy for me.

I realize that you have gotten raked over the coals for your comments. I know that you were hoping that it was all behind you. I just wanted to (belatedly) give you a little more perspective about what it's like on the inside.

The Results Are (pretty much) In: The Big A

Autism. That's what the SFUSD special education department said. The speech pathologists didn't say that, but her report pretty much adds up to that conclusion. The people at MDAC didn't say that directly to me but the SFUSD people mentioned that they advised them to evaluate him for it. I'll get the offical MDAC report probably later this month

Autism.

I'm sad but not surprised. Though the kidlet is a bright, funny, social and affectionate kid, the worrisome signs were always there. As an infant, he didn't look at people when they called his name and often seemed lost in his own world. As a toddler he showed advanced language skills that suddenly flat-lined at around 16 - 18 months. He could not/would not follow through on simple instructions. A big vocabulary early on, but didn't speak in sentences until he was two & a half. He speaks in declarative sentences but can't describe emotions or physical sensations. He likes to play around other children but is not interested in engaging in direct play with them.

At this point in time, you would not know that he was autistic just by looking at him. He does not fit the stereotype. He is not a headbanger, a self injurer or a hand flapper. He can and does make eye contact. He is interested in other people and will ham it up if he knows that he has a receptive audience. He can be deceptive. He is imaginative and creative. He just seems to lack an understanding of the some of the fundamental but unspoken rules that govern language and human interaction.

What's ironic is that I already know this about persons with autism from working with adults and children with mental health issues. Very few people with autism fit the "Rainman" stereotype. There was the kid I worked with who was a comic genius - he very much wanted to interact with people and seemed to have uncanny sense of word play and timing. There was the young woman who was mostly non-verbal but was very interested in men and broke a few hearts in the halfway house. She was also an incredibly reliable bullshit detector who would start laughing at people when they were being deceitful, which I found very useful when I was conducting community group. Again, in their own way they were very much engaged in the social world around them but were lacking the cognitive and social skills the rest of us take for granted.

How this will all play out is still up in the air. I am hopeful that the kidlet will catch up and will eventually be able to blend in with the neurotypical kids.

And so it begins

Last Monday, I finally took Jack in for a Speech-Language assessment. The results were troubling, but not surprising. He definitely has some deficits - he can readily identify pictures on flash cards, but withdraws when asked questions. Can answer a question when given a choice between two objects in front of him, but cannot do so if the question is asked without any visual ques. She recommended enrollment in an early intervention class for kids with language delays.

I had been worried about Jack's language for about two years. He was an early talker and had been picking up steam until he was about 17 months old. Then, for about two months, our family was hit by bout after bout of cold and flu. After the viral onslaught subsided, my mother and I noticed that Jack's language development stalled. What had been steady climb toward sentence use plateaued.

Back in July of 2008 I posted a question to AskMetafilter. In the thread that ensued I said the following:

"I dropped off a bit in my logging of his vocabulary in the last few weeks, but at last count, it was about 100 words. This is why it something seems off - he's taking in enough language to be able to say about 100 words, but rarely speaks to communicate, preferring gesturing and vocalizations. It just doesn't add up.

He'd been saying words for about a year and was chugging along just fine, until earlier this year, after the whole family was sick with a never-ending merry-go-round of cold and flu for about 3 months. His language development seems to have plateaued since then. I didn't express my concerns to anyone until the pediatrician asked about his speech and behavior and brought up Autism back in April."

The advice that I was given was mixed with some people advising that my son sounded normal for his age and others advising that he be assessed. I delayed getting the assessment. Why? Because I was afraid that I was being a bit neurotic, pathologising a perfectly normal variation in language development. I thought that he might catch up and the language explosion would be forthcoming. It never manifested.

So what happens next? Wish I knew.