An Epidemic No One Understands

November 28, 2006
Second Opinion
An Epidemic No One Understands
By DENISE GRADY
When our first son developed asthma as a 3-year-old, my husband and I felt pretty much blindsided. We were only a little less shocked when the same thing happened to our second son, at the same age.

The disease turned out to be tenacious, and for years both boys needed inhalers or a nebulizer machine several times a day to prevent asthma attacks that could keep them up half the night, coughing and wheezing.

Both had eczema, too, and the kind of food allergies — to nuts, peanuts and shellfish — that can lead to fatal reactions.

What caused all this? My husband and I were mystified, because neither of us had asthma or life-threatening allergies, nor did our parents or siblings. I do have hay fever and allergies to cats and dogs, but I had always considered my symptoms just a nuisance — not a bad omen for the next generation. My husband isn’t allergic to anything.

But we seem to have been caught on a rising tide that no one fully understands. Our sons were born in 1984 and 1987, and we encountered an awful lot of children their ages who had the same illnesses, far more than we remembered from our own generation.

Statistics suggest that something strange was occurring in those years. From 1980 to 2003, the prevalence of asthma in children rose to 5.8 percent from 3.6 percent, an increase of about 60 percent, according to the Centers for Disease Control and Prevention.
Read entire article

Hmm...Did I miss the memo stating this is Stupid Article Week? I'm referring to the Parents of ASD (and others) Have More Stress? Geraldine Dawson struck with this article (she's very critical of ABA and Recovery)

Anyway...Back to the current Dumb Du Jour...Duh people! I think we all know the cause of her son's asthma. Pollution. Toxins gallore everywhere. Day after day, week after week, year after year, increasing. Laid down by all of my neighbors for tick control. Added by food companies into food, water supplies, and into the air.

Everyday Life in 2nd Grade

So Leo, Sydney, and I are in the car driving home from Sydney's Bioset appointment. She decides to call Dad on the cell phone. She crosses her legs, and dials very professionally and gets him live on the phone. She's gabbing away about her day (she's 5 1/2), talking very "grown up". Leo says, "Sydney loves to act like a big girl doesn't she Mom? She cracks me up. She has her 'big girl' voice on." And I nod and smile in agreement (I am driving after all). Leo shakes his head and chuckles "I certainly know my sister".

Love that Theory Of Mind working!

In the car on the way to school (late again), I overhear Leo and Sydney talking about Gary in class, how he gets mad all the time. Apparently Gary (yes, he has an IEP)screams out loud at classmates on occasion, for different things. I say that I like Gary a lot, and that he's your friend, and so what if he has things to work on? (talk about reverse discrimination). That we ALL have stuff - Leo's talking out of turn, I have my temper, Sydney her her whining, etc. Leo says "I know Mom, I like him too, he's my friend. Jeremy tells me not to like Gary, but I do. He's my Secret Friend." I respond by saying all the right things - how no one else is the boss of who you like, and how you need to stand up for your friends. Leo says" I know Mom, I didn't do what Jeremy said. Jeremy knows that Gary is my friend. I just don't talk about it."

Love that social judgement working!

Leo has never told me or his Dad about any girls he may have crushes on at school. Not in Kindergarten or in 1st Grade either. He always gets very defensive and says he doesn't want to talk about it, that it's private. Recently I asked (I can't help myself!), saying, "well, if you HAD to choose a girl to like, who would it be? I promise I won't talk about it or tease you, nor tell anyone else." He held firm. I said, "Well, have you told anyone?" Leo told his best friend, and said his friend will never tell.

Love that he keeps secrets and has a best friend! More social judgement, enriching relationships

Mourning Our Loss

I could never say thank you to this man enough

My Bionic Hearing is Validated

So I just found this decible chart. Here are some of the items listed:
Airplane: 101db at 500ft
Leaf Blower: 82 db at 25 feet
Wake (from boat): 73db
Autum Day winds and birds: 55db
Truck's air brakes: 90db

You have to admit, those leaf blowers are the worst!

NY Times: Studying Autism Isn't Enough

Op-Ed Contributor
Studying Autism Isn’t Enough

By CATHRYN GARLAND and MICHAEL O'HANLON
Published: November 21, 2006
Bethesda, Md.

"As parents of a child facing these challenges, we applaud those lawmakers and fellow parents who have done so much to promote this and other initiatives. But research is not enough. We as a nation must also begin to focus seriously on treating those children who are already afflicted. At present, we are failing miserably to do so.

In America, you have to be lucky or rich to get proper care for your young autistic child. Treatment regimens typically cost more than $50,000 annually for preschool children — one reason proven methods are available to perhaps only 10 percent of afflicted children during those crucial years. In a few states, like New Jersey, educational systems provide therapy to preschool kids, but resources vary from county to county. Here in Maryland, our 4-year-old daughter has received an hour or two of publicly provided help a week; studies show that ideally up to 40 hours of intensive intervention are required. A handful of states, including Maryland, have established a Medicaid autism waiver to allow parents of severely afflicted children to obtain relevant services independent of income. " Read Article

Phew. I've been screaming this very thing for years. We need to adequately support our current population of ASD children. It makes economic sense as well as human sense. I'm beyond happy to see this in print, let alone in the NY Times. I also like the fact that behavioral intervention is discussed. One of the key viable options for our children.

But I'm sure the internet tonight will be buzzing about. The biomedical factions bashing this fellow ASD family (and beautiful daugher)for their lack of mentioning other interventions. I take this personally. Will people ever realize that you can't fit everything in every article?? If only Autism were that simple.

Will people ever realize that ASD is a spectrum disorder, not soley caused by one thing or another? That the blend of ASD is different for each child. And in turn requires a unique blend of services?

I take joy in knowing phone calls will be made today about services because of this article. I can guarantee many children will have a better life because of it.

On Bad Days Good Things Happen

So Leo has been cranky boy ALL day. And days are long when there's no activities and no school, right? I've been waiting for 7:30pm since 9am this morning.

Anyway, he told us a story about Sydney. She had fallen down and hurt herself at a friend's house. He said that she hadn't "really" hurt herself since she (demonstrating) took two tiny steps than put herself on the ground. I also liked that he thought it was funny how she devised this, and how he gets so much entertainment out of her.

Later at dinner, Sydney said she liked the song that was on (Sirius Satellite Radio, Coffee House station). He rolled his eyes and said "all the songs on the radio are about girlfriends and love and stuff. Gross". My husband said that's such an 8 year old response, and went on to explain how people often write songs about emotions, and that love his such a popular one.

Yay, bedtime! Desperate Housewives...ahh.....

Things That Make Me Scream

O.J.s new books "If I Did It". Shame on anyone who buys it. To read more about this and other gems, go to The Huffington Post. Mark Foley has had the number one spot for quite some time. Never thought he'd loose the crown this quick.

Conferences

So I finally made it into the classroom with my old friend anxiety, my empty stomach, and my husband for a guest appearance. Our 2nd grade Conference day finally arrived! 1:45pm seemed like forever to come. Mrs. P got right to it by showing us Leo's journal - answering the question about Self Control. I noticed right away she gave us no eye contact. No eye contact. Of course this made me nervous as hell. Later, I realized it's her personality - maybe she's bit shy. Maybe she's been beaten down by parents over the years. Who knows.

She had asked the kids the question "What do you think your parents will hear about you during your conference? My first thought was how this could be a bit stressful for the kids, making report cards more important than they should be when they are only in 2nd grade. Bluch!

Leo's response was something like 'I think I am a good student, that I like math and reading a lot, but that I need more self controll'. Mispelling included, just like his mom, ha ha. I'm so proud! It turns out that Self Control with Leo is "blurting out" comments due to excitement about a topic. More than the average kid in class. So that's my answer. Mrs. P has to "remind him" to keep his thoughts in his mind. He doesn't finish her sentences or answer questions when not called upon like last year in 1st grade. In my eyes, it's a significant improvement.

To my relief Mrs. P gets Leo, but doesn't "get" him, just yet anyway. I know it's been only 3 months. As you may know or not know about me, I'm quite a linnear thinker, and to me, people (parents and educators in particular) are either natural behaviorists or not. Does one see cause and effect effortlessly and naturally? Does one see where the root of a behavior comes from?

Mrs. P is not a natural (more on this when I write about another topic - the other ASD kids in 2nd grade...) She sees the surface and addresses just that. Kind of like a pediatrician now that I think of it. Treating symptoms rather than the cause. As a teacher friend pointed out, you can't teach someone how to be a good teacher, you either "have it" or you don't.

I am happy that Self Control isn't debilitating for Leo in 2nd grade. It's not keeping him from learning. It may be a slightly irritating to others, but hey, a far cry from what it could be. I'm happy that Leo is aware of his issue, is not embarrassed by it, and doesn't keep him from having a fairly "normal" day as a 2nd grader.

Question 2; Leo's writing is mediocre. Specifically "Writes with elaboration and includes details" got himself a "Some progress noted". How did he go from being one of the best writers last year to just mediocre? Not that I'm surprised. I was surprised last year that he did so well in this famed "imagination" category for ASD. I realized that Mrs. P gives more open writing assignments, and last year's teacher gave more structure and prompts. Actually, Mrs. P let us read one story about Leo's experience on a beach. It was so good! I then realized it was good because she referenced using their senses. Duh, lady!

Mrs. P.said she dislikes the more structured style of teaching writing. She thinks 2nd grade is about getting them more comfortable about writing, and that it's a review year - gearing up for 3rd grade, the CT Mastery Test, and so on. This isn't my area of expertise at all - 2nd grade curriculum, but my instinct tells me that, at 7 and 8 years old, wouldn't providing some structure help build comfort in writing? Maybe one of my writer readers can answer that question for me.

All in all, she said he's a nice boy, compliant and respectful. My husband asked how he was with social interactions (I was too freaked to ask). She said she thought he was fine, that she doesn't get much opportunity for observation since they shortened recess. She doesn't see them at the specials or lunch - she picks them up and drops them off so she can have her 20 minutes of peace. Boy am I happy that I did all that volunteering last year - I was there 2 times a week for recess, lunch, and library time. I got such a good feel about the social groups and dynamics, and how everyone was doing. And it was very educational to see what 2nd graders are like, and that Leo is just one of them - just eating a GFCF lunch!

I didn't get a chance to process what had happened - that yet another year was turning out well, that our issues are manageable and not problematic. That Leo and his teacher are happy. I didn't get an opportunity to say how her lack of enthusiasm isn't good for Leo. We ran out of time, and I decided to not make an issue of it - I saw it's her personality. She's just not a dynamic person. She "phones in", as a fellow parent said.

My husband said he'll have more teachers like this than not, and he has to get used to someone like that, that's not going to be a cheerleader like last years teacher or us, or his former team. We realized again, after combing thru the curriculum with Mrs. P, that the 2nd grade program is fantastic - all 4 teachers basically do the same thing. The school is fantastic, and he's happy knowing just about everyone there. Not to sound like an optimist or anything! So we'll see how it goes - I may say something later.

We rushed out of there down the hall to the Kindergarten room to meet Sydney's teacher. We had only about 10 minutes left. Again, boy king is the priority. She showed us an empty index card, and said "See, I have nothing to say. No problems at all!". She then went on to say how she's a wonderful student and person. She's enthusiastic, enjoys all aspects of school. A good girl. I got teary when I heard that, but I think I was beginning to feel relief from Leo's meeting. Sydney's teacher also brought up the fact that she and Leo are so connected. It's rare, she said. They love seeing each other during the day, passing each other. Waving hi, giving hi-fives. Sydney always tells her teacher "I saw my brother! I saw my brother!". Her teacher knows Leo. She didn't have him, but knows him since the kindergarten classes have recess together. And of course, she is in the dark about his past. I feel so lucky they have each other.

A Shot Out to Milton Friedman

A half century ago, Milton Friedman's advocacy of free markets over government intervention and his prescription for inflation-fighting by central banks were treated as fringe notions by many economists. By the time the Nobel Prize-winning economist died yesterday at the age of 94, his views had helped to reshape modern capitalism.

A true libertarian! The first man to inspire me with his writings in my econ books. He changed my major, he changed how I look at the world. Milton and Leo have something in common.

Good Things to Remember While Waiting

Leo spontaneously summarized his standing in class the other day during dinner. Dinner, the 3 of us, happens each nite around 5pm. Dad comes home later, round 2 for them - some fruit, perhaps a little dessert, and daily supplements mixed in yogurt. Anyway, he began sharing how he admired his new friend Jack that sits next to him in class. We've never had Jack before, and so I had no preconceived ideas about him. Leo began saying he's "the smartest" kid in class, giving some examples. Surprised, I asked him to define "smart", and how he felt about that. Leo said Jack knows pretty much all the answers, reads and writes really well, and is excellent in math facts. I could tell he was really impressed, but not envious. I asked what he thought about himself. Did he feel he was doing well? He said he thought he too was "one of the best kids" but not "THE best" in class.

His awareness astounds me. He's figured this all out on his own - that in a class how people measure up and how teachers and other kids respond to it. I've never asked about this. I've never wanted to fuel any competition. I've only focused on how HE feels about himself and his accomplishments, focusing on trying your best, and reminding him that each person is different and good at different things. And when he's sound arrogant at his natural academic ability, I remind him about humility, showing-off and the consequences, and other stuff like that. And, that we all have our challenges like his talking out-of-turn. And mine is yelling!

Leo also notices how some kids don't try their best. Some goof-off more than others, and some get in trouble more than others. He's got everyone's number in his class, or at least those that sit at his table. He even gets irritated by his best friend because he pretends to read his books from his browsing box during reading time. Leo said he always "really reads" because he wants to get better and do a good book report afterwards.

Leo is no saint - he shared this morning how he and his friend sneak past the hall monitors and go through a different door to get to their bus early. They make a game of it and see who gets there first. I like that he knows the system at school and finds ways around it, even when it's breaking a rule. Love it!

Okay, back to obsessing....And why do I obsess? I must monitor Leo's progress to see if he needs some type of servies again. I have to be realistic - something may crop up that is disability related that needs support. It never ends!

29 hours left until my Parent/Teacher Conference. I still have no clue what I'm going to say regarding her lack of encouragement. I may point out that I've noticed his writing is subpar to what I saw day after day in 1st grade. He does just enough to get by. Leo was so inspired last year! He'd write on and on, and he was one of the top writers in his class. His work was often the example for class - embarrassing him by reading his work to the whole class. As you can guess, I relished the part about being embarrassed the best! Those emotions, indicating he gets what's going on around him, interpreting them accurately. What more could I ask for?

I'd have to guess at this point she still doesn't know him - has no idea what he's capable of. I don't really know how detailed they go when a teacher passes info on to the next. That's a lot of stuff to read for 22 kids, but hey I think it's important. Speeds up the learning curve, and sure, it may give impressions that may not benefit the child.

Sydney's conference for kindergarten is right after Leo's. I hope I can be present enough for that to be productive. I want to be there for her, and really get a feel for how she's doing and if there's an issue.

Look Out, Mom's Loosin' It

November 14, 2006 (8yrs 1 month)

Leo had a great birthday (10/15). His father and I didn’t even have to speak about what was going on inside our minds. We are so proud of him! Now that he’s 8, we’ve graduated to the small party of good friends. Phew! I sat back and admired his friends. And they are good friends! Not just one, my only hope for him at one point, but several. They are complex, well-rounded kids that are each different in their own right. His hard work is never forgotten. Every day I remember where we came from. It’s hard to believe that just 6 years ago he was officially diagnosed with PDD-NOS and just 2 years ago he was therapy-free going to typical kindergarten.

Leo continues to enjoy school. He still much prefers his 1st Grade teacher, even after 3 months. I’d have to agree. She’s friendly and funny, but not warm. Does that even make sense? On his birthday we brought in Yankee cups full of fresh fruit. Yes, I’m “one of those moms”, those fruit bearing moms that Kristina Chew references on Autismland. Ha ha! Here are a few examples of her lack of warmth and enthusiasm. Is she burned out? Has she lost that lovin’ feeling? You decide...

As snack time was approaching, Mrs. P said to Leo, “well, I guess we can do your birthday now to get it over with”. She also sent the snack trays home with Leo on the bus after I sent a note saying I’d pick them up. She said to Leo “I’m tired of them being in the classroom”.

During a field trip to a beach, not once in the 6 hour span did I see her take joy in seeing the children discover new things. “Hey look what I found Mrs. P!” was rarely said. They got her number. Of course they all circled like flies around me and the other chaperone moms on the trip. With wonder, they all screamed, giggled, and ran around with excitement. Some had never seen a jelly fish or a crab, let alone hold one.

Many talks later, I have to believe that Leo is telling me the truth – her words aren’t hurtful. “I’m fine, Mom. I don’t care, Mom.” And then it’s the old catch 22, should I worry it DOESN’T bother him? Or maybe it does but he’s concealing it? He’s gotten quite good at acting these days....
R>He likes Mrs. P but doesn’t LOVE her like his old teacher. He’s happy. I have to believe him. I told him we have options, but he declined all of them. I’m going to “say something” during the conference on Friday, but I’m not exactly sure what. I want to scream “look lady, hundreds of thousands of dollars, countless hours later, Leo has excellent self-esteem and confidence . If you fuck it up because you can’t muster a fake “happy birthday”, your dead”. I know I’m evil! Today I felt those panicky old feelings creep up again as I saw Leo’s report card lying in his home folder. My head was swimming, the vacation is over. I started making plans to get his old ABA team back in my head. I began practicing my spiel for the kids and the moms why Leo is no longer free for play dates and now needs a shadow again. I began practicing my 2nd grade definition of Autism. I felt cold. I finally opened it and I could barely see the print. I was so freaked out! Finally, there it was parked under the heading “Personal Development”. It jumped out like an old friend does. Self Control. And next to it a -. A minus which means “needs improvement, not where it should be”. Nothing else noteworthy, just that. I should be throwing Leo a party. Handwriting, reading, math, everything else with a positive mark. No need for what I was thinking. I’m the worst mommy in the world for thinking like that. I suspect it’s the same challenge as 1st grade – it’s the calling out, talking out of turn like last year. And thus it begins, the agonizing countdown till Friday when I have my parent/teacher conference.

Same thing, different year and teacher. Will she realize that Leo is different? Will it make a difference? What will her version of the executive functioning deficit be? What will Self Control mean to Mrs. P? Will she guess he has a disability? Will the jig be up and he’ll be treated like a toddler?

We’ve had quite a few days off due to professional days and holidays. Leo prefers going to school instead of being home those days. Weird? I don’t know. For a child that likes routine and likes seeing his best friend in class rather than staying home, unstructured, with his little sister....sounds predictable. He was a little bored, whiny, and irritable. He relishes his weekends which is pretty much the same thing, other than the fact that Dad is home too. It does bother me and makes me question his schedule.

Leo’s little sister swallowed her first pill, a B vitamin. Still a challenging task for him. What I loved was his response. He came into the kitchen and watched Sydney and me jumping up and down. He looked at her and smiled while watching her “moment”. A few minutes later, I offered that he could try swallowing pills now if he wanted to, and he declined. He said “No....I’m just a little jealous, that’s all”.

What a big kid – he signed for a UPS box.

I know I’ve jumped around a bit, but that’s how it is for today. Lot’s of stuff floating around in my head aching to get out. Stay tuned – only 42 hours until the conference!