Category: THE SPECTRUM

June 4, 2012

crackpot autism reporting at the daily

A friend sent me this story from The Daily. (I’m not sure if he wants to be h/t-ed, and no one is reading this anyway.) The lede implies that a Nobel prize-winning physician is teaming up with the ostracized Dr. Andrew Wakefield and saying that simple antibiotics cure autism.

You can read (hopefully with a vat of salt) the story; I’m not interested in spending a ton of time on this crap anymore. Pardon the vulgarity, but it’s a circle jerk, and I’m nearly blind. Hopefully, readers will be discerning and wonder to themselves, “Hey, how would such a smart man come to such a bizarre conclusion? Maybe I should settle down and investigate his rationale for himself.”

They would learn Dr. Luc Montagnier has a theory about infective agents being involved in autism. Ms. Gifford snarks that Dr. M is saying, “A single antibiotic pill each day, he believes, is enough to cure the devastating ailment.” A statement that’s contradicted elsewhere in her own article.

What’s happening is Dr. Montagnier is proposing a possible treatment that might be used with other treatments. For some patients. After further research. And much careful thought from caregivers and doctors.

Her opinion (I really hope this article isn’t intended to serve as responsible reporting) is backed up by a couple quotes from Paul Offit whose sole purpose in life has become to be the Luke Skywalker to Wakefield’s Darth Vader. (Or vice versa. I don’t care anymore.) Paul Offit could give a shit about helping people with autism, in my opinion.

Gifford is quick to mention that Dr. Montagnier’s remarks were made at a Generation Rescue event and that Generation Rescue is the headquarters for Jenny McCarthy’s activism, and that Jenny McCarthy has posed for Playboy, as if that’s relevent. It isn’t.

All that is annoying, but it’s nothing new. What’s infuriating is the tone of the rest of the article, and hundreds of other articles, which imply that parents are so stupid as to forego all other treatments and opt to give their kids an antibiotic and call it a day.

That’s absurd; Offit, Gifford and their ilk know it. They think it’s cute. Maybe as cute as a short bus full of non-verbal, stimming kids with chronic GI issues being driven to anyone’s home but theirs.

June 1, 2012

skateboarding and autism is perfect fit

We moved to Selah, Washington in late 2007, about a year before Jack was diagnosed with autism. It was a small town, so I was surprised to see they already had a skatepark – behind the high school near the mainstream sports fields. Once in awhile I would drive by and think about how in a couple of years Jack would be using it. I gave more thought to whether or not I would insist he wear a helmet skateboarding than I did to whether or not circumcised him as a baby.

After he was diagnosed my heart would drop when I drove by because he would probably never be able to skate or do any other sport. Not because he wouldn’t have the physical potential, but because he wouldn’t have the social skills. At that time I couldn’t even let go of his hand for a minute at the grocery store. I know my husband has dealt with similar disappointments about things like little league and Boy Scouts.

Jack really struggles with some sensory issues which give him an impulse to bang his head against the wall to the point where he actually breaks sheetrock and has formed a permanent callous on his forehead. He tends to jump a lot and be generally rambunctious, beyond the normal boy kind. He also seems to like to move furniture and heavy objects around for no clear reason. He tried to move the dining room table to the basement once. The way I understand it he’s seeking out the impact on his joints… or something. I had wondered if skateboarding would get some of that out his system, and I finally googled “autism + skateboarding” a few weeks ago.

I don’t know about the sensory stuff, but I found out skateboarding is being used therapeutically to help autistic kids socially. It’s the kind of sport where conformity has no value and they can sort of do their own thing with other people. It goes to “parallel play”.

The best resource I’ve found is A.skate (<— I think you’ll “like” their Facebook page), and I’ve been driving everyone nuts about it ever since. It was started by a mom, Crys Worley, after seeing how much skateboarding helped her son. They travel the country, largely out of pocket, and hold skateboarding clinics for kids with autism to try it out. They provide all the gear for the clinic, and if a child wants to continue they offer grants to pay for their own gear. It’s also cool that the funds are given to a local skate shop, as opposed to a discount retailer, like store credit, so they’re supporting the industry.

Just go check out their website. Watch these videos. Flip through their flickr. Keep in mind how awesome it is just to see kids with autism and their families having bonafide fun outside their house.

And check it out, Ben Harper has signed a limited number of these prints to raise money for a.skate. Ironically, this album played a huge part of getting me through my most recent dark period spent worrying about how autism was affecting both of my kids.

May 6, 2012

autism roundup: cutest piano man ever, little league and another controversy that shouldn’t be

Haven’t done an autism roundup in a while, mainly because I’m tired of thinking about autism, and I’m sure you’re tired of hearing about it. Still there, though.

We’ll start with something cute. Ethan Walmark’s rendition of Billy Joel’s Piano Man went viral last week. He’s a good piano player and has a nice voice.

A Michigan boy with autism and epilepsy has been allowed back on his Little League team. Some of the spin has implied that he was discriminated against in some way, but the truth is his coach was genuinely concerned for his safety. The coach claims his motor skills aren’t up to par.

His parents appealed to Little League International and got him back on the team on the condition he wear protective gear.

I hope he doesn’t get hurt. For obvious reasons, I support the family making the decision and taking responsibility for the consequences on their own, but I don’t think I would do it.

A Tampa doctor claims to have determined 3 ways expectant mothers can lower the risk of their babies developing autism, and every one is freaking out. He offers pre-pregnancy screenings for vitamin deficiencies, hypothyroidism and toxins like lead, pesticides and mercury. I assume the protocol would then be for women planning a pregnancy to detox their systems as much as possible beforehand.

This is being deemed controversial by a multitude of a***oles I don’t feel like linking to. Probably the same people who told me I shouldn’t have colored my hair or drank tap water.

The state isn’t paying for these screenings and there’s no danger of Dr. Berger’s recommendations hurting the babies or mothers, so I fail to see why it’s controversial. Oh wait, the people who are determined to convince us that autism is neat or an all or nothing situation that just needs to be accepted like a chromosomal ~~defect~~ difference.

With 1 in 54 little boys being diagnosed with autism, with the reality that those little boys are going to grow into 1 in 54 grown men with autism who will require great public support if their conditions aren’t prevented or treated aggressively when they’re young, with the knowledge that these individuals’ differences do indeed cause them unnecessary suffering, it actually makes sense that the public would want to make sure these screenings are available to all expectant mothers, assuming further research shows Dr. Berger’s assessments are correct.

April 22, 2012

WHAT HER PROBLEM IS…

I’m not posting much because I’m busy throwing myself an epic pity party. I’m depressed over legit stuff, which our society currently seems to have less patience for than people who are clinically depressed over imaginary stuff or circumstances they created for themselves. Two years ago I asked God for a way to prevent something like this. He started answering then went out for a pack of cigarettes or something.

I’m sure He has a plan. I think it will be over soon. I’ve been through times like this before and the nervous breakdown usually comes right before the resolution, but right now I can’t seem to focus… on anything. I’ve tried to just snap out of it, and I can’t. I’m doing my best to not spread whatever this is, but I’m not doing very well. Then I feel like an asshole for that. I’m really sorry about what anyone who shares physical space with me right now is dealing with.

I miss my dad. I think if he was here he’d tell me to get my ass out of bed and be nice to my mother, but I don’t think he’d try to convince I shouldn’t be pissed or hurt or frustrated about the things I’m pissed and hurt and frustrated about.

I haven’t lost my faith, but it’s hanging by a thread. It might sound strange, but what doesn’t help is being reminded that God is in control of this, regardless of what the truth is. I can’t praise God in this storm. I know I should, but I can’t. I’m forcing myself to go through the motions of being a Christian, but I need to be allowed to not think about God while in this frame of mind, which comes and goes. It makes things worse. It makes me angry with Him, even though intellectually I understand he isn’t doing or allowing these things just to screw with me, but it feels that way and fighting that is exhausting.

P.S.

Also on the list of things I’d rather not discuss are any election, a handful of naughty secret service agents and whether or not a white guy killed a black guy because he’s black especially when said white guy isn’t that white.

Housekeeping note: I guess sometimes if people are subscribed to comments they get emails about comments in moderation, including retweets. I shut off that function, but it didn’t seem to take. Anyway, I’m working on it. Sorry.

April 8, 2012

ANOTHER MISSING AUTISTIC CHILD FOUND DEAD

This one is especially heartbreaking. 9-year-old Ariyanna Pivachek disappeared from a birthday party this week. After a desperate search including 9 divers and a helicopter her drowned body was discovered in a nearby pond. The pond was about 40 feet from the party location, and her body was found about 15 feet from the shoreline in water about 6-8 feet deep.

That’s all it takes, a few minutes and a pond or a busy road or a trunk they might crawl into.

The extra heartbreak in this story comes from the fact that Ariyanna was in foster care. A family who were considering adopting her had taken her to his party.

I have no interest in berating a family who had opened their hearts to the idea of taking in a special needs child. I’m sure they are devastated and guilt-ridden enough, and people without first hand experience in dealing with a wanderer or a bolter can’t understand the hyper-vigilence it takes to keep these kids safe.

It’s harder enough for those of us who do get it. One distracted moment can create a tragedy. Just today shortly after we got back from a family gathering we noticed we hadn’t locked the padlock on the front door behind us when we came in. If Lord of the Flies had noticed he would be gone.

Wandering and bolting are hands down the worst aspect in caring for an autistic child, at least to me. 92% of autistic children wandered, and drowning is the #1 cause of death for autistic children.

March 31, 2012

LAZINESS AND DENIAL STILL RAMPANT IN AUTISM DISCUSSION

Heads up, April starts tomorrow and April is autism awareness month. Stick with me, and we’ll get through it together.

Last week the CDC finally released numbers reflecting what most of us have known for years. Autism is now affecting 1 in 88 children in the U.S. For boys the numbers are 1 in 54. 1 IN 54! It is an epidemic. We need a solution, and handwringing and dismissing the numbers with the absurd notion that these kids just weren’t diagnosed before ain’t it.

They don’t just line up their blocks and keep to themselves. Chronic gastrointestinal problems (come do a study in my bathroom when someone gives my kid wheat or dairy), life-threatening seizures (yes, Virginia, autism can be fatal), bolting and wandering to their deaths (we have to worry about Lord of the Flies jumping out of his bedroom window) and other self-injurous behaviors are the reality for the families of 1 in 88 children in America now.

We would have noticed if 1 in 88 children were doing that shit 20 years ago. The better diagnosis explanation is infuriating bullshit.

In the above linked article an “autism expert” claims to tell parents of high-functioning autistic children that 20 years ago their child wouldn’t have been diagnosed. I agree. The child wouldn’t have been diagnosed because the child wouldn’t have been autistic.

Instead of finding out what the hell is going on, condescending intellectuals are focused on a mind-blowing 3 point narrative.

We didn’t do it.

We don’t know what did.

Sucks to be you. (Or worse, that it’s a blessing.)

And for those of us crazy and lucky enough to explore alternative treatments and see improvement, then our kids were never autistic in the first place.

Witty conclusion developing…

March 12, 2012

i know why the caged mommy kills her child and then herself

It’s happened again.

The autism community was rocked again last week when news broke of another mother killing her autistic child then turning the gun on herself.

People are wondering why.

I don’t. I know exactly why she did it. The problem with mothers of autistic people is that they’re human beings. We require a minimal amount of sleep and potential solutions. We perform best when we have hope and get grouchy when it runs out.

Without realizing it families of autistic people often isolate themselves. When you’re caring for someone with an illness where symptoms are intensified by the world you tend to avoid the world without even realizing it. You stay home and keep the world out. You’re so overwhelmed and feel like you just want to be left alone a little while to catch up, to catch your breath. You’re holed up with this cacophony of madness. You lose the few but essential scraps of hope, perspective and support the community may want to provide, and the community isn’t there to witness the lonely spiral.

You truly go mad. I don’t think moms tend to snap more because fathers aren’t attentive or just as overwhelmed, but my experience has been that you’re faced with a million where everyone is looking to mommy for an answer. And often there’s just no answer. You eventually just try to handle everything on your own.

There’s no good answer for it. It just sucks.

It also seems like this is happening as kids are coming of age. Or when they should be coming of age. A couple of years ago I would hate running errands with him because his symptoms just looked like bratty behavior to civilians. The last year I’ve noticed people seem a lot warmer to us. It’s partly because he’s improved, but also because he’s older, so it’s clear there’s “something up” with him. Autistic people look normal, so as they get older their weaknesses become more pronounced. Lord of the Flies will be nine in July, and I’ve been thinking a lot more about whether he’ll graduate from high school, college, live on his own, get married or have his own family.

These women are likely facing the reality that their predicament will likely last the rest of their lives and the worry about what will happen to their children after their gone.

February 8, 2012

INTRO TO THE GFCF DIET

My plan has always been to share my personal tips and resources on the gfcf diet here, but I’m still not sure how best to organize them. For now I’ll just post things as they come to me.

About a year after Jack was diagnosed his behavior at school went completely haywire. He had a great specialist where we lived then, but it always took about a month to get in to see her. I think she treats every child on the spectrum within a hundred miles. His teacher noticed that he really went nuts first thing in the morning and right after lunch. At that time all the smart doctors would talk about was whole grains and how wonder bread is poison. POISON! I’m not into hand-wringing, so I’d coped with the diagnosis by doing any little thing I could think of to take care of the parts of our lives that still worked. I was also so grateful for the school situation he was in I thought the least I could do was send him out the door with a good night’s sleep and a healthy diet. Every day I was packing him a peanut butter sandwich on whole wheat bread, wheat thins instead of potato chips and an oatmeal cookie. The bread and crackers were full of gluten. His teacher put it together and asked if I’d tried taking him off wheat. Like I said, I’m not into hand-wringing, so I started researching dietary solutions immediately. I took him off gluten and casein (wheat and milk). Within days his behavior improved, and eventually g.i. symptoms I hadn’t even realized were part of his autism improved.

I’m not obliged to prove to skeptics that what helped my kid helped my kid. Readers can be assured we went about this in a way to eliminate the possiblity of a placebo effect. On top of that, there have been mulitple occassions he got ahold of gluten and casein, and we found out about the breach AFTER noticing the negative symptoms come back. Three years later I am 100% positive that the gfcf diet helps my son tremendously and is worth all the time and money.

The good news is it doesn’t take as much time and money as I thought it would. Although it is overwhelming to wrap your head around in the beginning. In the following posts I hope to pass on tips, tricks and resources I’ve found in amounts that would be easy to implement.

In the meantime, the good folks and gfcfdiet.com and TACA go into mindnumbing detail on how the diet works, what’s allowed and what’s not.

February 8, 2012

KATE WINSLET’S AUTISM SCRAPBOOK

Kate Winslet is on the cover of Ladies’ Home Journal promoting her new book about autism even though her children aren’t autistic. First thought? ”Holy unsolicited advice, Batman!” However, I’ve spent the last few months complaining that it seems like the some of the general public pays autism a lot of lip service, then won’t believe and even mock families like ours who have seen first hand that the cause of this epidemic is environmental, dismiss the problem by saying it’s over-diagnosed or exhibit an array of other behavior that tell us they really aren’t interested in finding a solution.

They’ll call mothers like me heroes then give us the stink eye when our children have a meltdown at the grocery store. They’ll concur with me when I privately correct misinformation then turn right around and say it again (I can see your tweets). I’ve resigned myself to the fact that, while well meaning, many won’t “get it” until these children are adults having public meltdowns, unable to live independently, are unfit for combat and draining social services. Most maddening is the fact that what is happening to these children is utter bullshit and likely preventable.

So while the notion of Kate Winslet writing a book about autism is like Taylor Swift writing about gang violence, perhaps we should be grateful for the gesture and welcome her to the conversation.

(Notice I didn’t say cause of autism. Most of us, including Jenny McCarthy, believe people with regressive autism are born with a genetic predisposition which is triggered by something(s) we have in our environment today that we didn’t used too.)

UPDATE: It turns out the book is some sort of picture book. Celebrities were photographed in some hat to support autism awareness. It came about after Winslet narrated an autism documentary, and she’s started her own autism charity. (I wish these people would just team up with established charities instead of starting a million new ones. It makes me think they have an altruism rider demanding top billing for good deeds.)