Living, Learning, Laughing, & Loving with Autism

The Positive Side of the Party

2009-11-09T21:53:00.006-05:00

I don't want to linger on the difficulties when it was really a wonderful day for the boy that it was all planned for- Corbin! He had so much fun and it was great seeing him interact with his new friends from school. He recieved a bunch of Bakugan toys, legos, science stuff, and learning books (all things he asked for) as well as some other great gifts! I think everyone agreed that laser tag was the most fun activity- as the grown-ups also played with the kids. One might argue that the grown-ups had more fun actually lol.

Some pictures to share Corbin's SEVENTH birthday!

{{socializing with friends.}}

{{bri stuffing his mouth with cupcake.}} {{spinning the wheel.}}

{{checking out his cake.}}

{{blowing out the candles.}} {{kung-fu fighting card.}}

{{bakugans and lego star wars video game. perfect.}}

Brian and Jokers Do Not Mix

2009-11-08T15:03:00.006-05:00

It's been awhile since I've worried about bringing Brian to a crowded event. Sure he doesn't do wonderful at most events but he does okay, he's able to hold it together for quite a while.
Yesterday we went to Jokers for Corbin's birthday party. Jokers is like a Chuck E. Cheese only bigger and better. There is laser tag, a HUGE playhouse, a ferris wheel, bounce house, arcade games, and more. And it was crowded. Extremely crowded and extremely noisy.
First thing Brian ran into the playhouse. He really enjoyed it and was able to maneuver through even the trickiest areas. After a half hour in the playhouse our hostess brought the pizza. Getting Brian out of the playhouse was a struggle, but still not a meltdown. Everyone ate pizza and then Corbin started to open his presents. That was when the meltdown started. He was done eating pizza, he wanted to back in the playhouse. It was a full angry meltdown. Screaming and I couldn't get him to calm down. Usually I can squeeze him, sing to him, rub his back, something to calm him down. It wasn't happening. Josh's neice offered to bring him back in the playhouse and then he was good.
They came back just in time for the cake. Brian stuffed in one of his cupcakes I brought for him and then again just started screaming because I wanted him to wait for everyone. I again couldn't get him to calm down. I looked around and thought, the bathroom is probably the quietest place. I bring him in and he is still screaming and wriggling out of my arms like I'm abusing him. He gets away from me and runs full speed into a stall that was occupied. I pulled him out, apologizing to the occupant. I sit on the floor and finally get him to calm and ask him if he is ready to go back, he replies, "Ready".
We go back out and he waits with me nicely for me to hand out tickets and tokens to all of the kids. I then let him go into the playhouse again. While he is in there I decide maybe I'll go around and try to play some games. I just put in my first token into a game and I see Brian running around the grounds of the building SCREAMING, tears running down his cheeks, and holding his hands over his ears.
I run after him and he doesn't even want me to touch him. I am trying and trying to calm him and he is not having it. Everyone is staring. I carry him over to the bounce house and the attendant is trying to stop him from just running in and he isn't having it. I let her know that he has autism and he is extremely overwhelmed, she immediately steps away and lets me take over. We both climb into the bounce house.
Luckily, it was empty- so it was just the two of us. He threw himself onto the floor and started rolling around, kicking his feet, and just crying, not letting go of his ears. I actually lay on top of him and whisper in his ear. I could feel the tension start to leave his body. I rolled off of him and laid next to him and we just laid there in silence for a few minutes.
We got out and held hands and walked out. He was able to hold it together for the last 45 minutes of the party, after he got over that hump, but it was definitely not a place that I plan on bringing him to again any time soon.

Seven Years of Being A Mom

2009-11-06T09:20:00.003-05:00

Today my oldest child turns seven. How does time fly? I ask him over and over to please stop growing but he is not heeding my advice. He tells me he loves to learn and learning makes him grow and he just can't stop learning. He is such a smart, sensitive, personable, funny, kind little boy. I am so proud of his growth and even though I ask him to stop growing I am looking forward to watching how he changes and grows.
Is a sad moment for me as we always have birthday breakfasts with blowing out candles and opening one of your presents. I had an anatomy and physiology lab this morning and had to leave my home around six am. Josh is under strict directions to follow through with our routine and take a lot of pictures. Hopefully he had a great morning!

Halloween Snacks

2009-11-01T19:38:00.002-05:00

I made these delicious Halloween snacks for Brian's party at school. By the way, his teacher asked all the parents to bring in gluten-free/dairy-free food. I was impressed!
I melted down Enjoy Life chocolate chips and dipped Ener G sesame seed pretzel rings into the chocolate. I then covered them with Halloween themed candy sprinkles- Betty Crocker brand.
Simple, easy, and very yummy!

Help Me With My Research?

2009-10-31T09:18:00.003-04:00

This is a call going out to all my fellow parents whom believe, actually who know, that vaccinations played a part in their child's autism. I have decided to do my big end-of-the-year paper for my English class to be based on the hypothesis, "Our current vaccination schedule is unsafe for some children and that it has played a part in the rise of autism".

For a good research paper I need to have resources that are unbiased- I'm going to be using fourteenstudies.org, which we all know is biased BUT they provide all of the key studies that researchers keep claiming show that there is no link between vaccinations and autism. So where the site is biased the information provided is not, in my opinion.

I'm also using the book, Healing the New Childhood Epidemics, by Dr. Kenneth Bock. Again, this book is biased as Dr. Bock truly believes in what we all believe. But he gives his information in the book very scientifically and matter-of-fact.

I really need one more good resource- that can't be contrived as biased at all. I've been searching the web but it is sometimes so hard to sort through the millions of sites there are. If anyone knows of a really good site please comment or email- hstclair@kvcc.me.edu.

Thanks!

Sensitive Soul/Sensitive Stomach

2009-10-29T12:35:00.003-04:00

I woke up this morning to hearing someone in the bathroom. I could hear Brian laughing in his bedroom so I knew it was Corbin. After quite a while I went in to check on him and I asked him what he was doing. He replied he was throwing up- I looked into the toilet and really only saw what I thought looked like spit. I told him to go lie down in my bed. I laid down with him and cuddled and said the line, "What's up kid?"

He was quiet and said, "I don't want to tell you this." I reiterated to him that he can tell me anything. He then told me that no one wanted to play with him yesterday at the afternoon recess. I asked him if he thought he was throwing up because he was sick or because he was worried no one would want to play with him today. He said, "Because of recess". I then thought- okay he's making himself throw up. This is not good. I mean, I remember pretending to be sick, but I was a tween/teen with all those hormones going on and my boyfriend of a day broke up with me or something ridiculous like that. But not when I was seven.

Later, when we decided he would go to school, he threw up again. He turned around and said, "This is so weird Mom. I usually throw up when I see something disgusting but I don't see anything disgusting, I just feel upset." I saw him throw up this time- sure, it was just the water that he had drank but it really didn't seem like he was forcing it to come up- that it just did. Corbin has always had an extremely immature gag reflex- he's thrown up at seeing smashed pumpkins outside, from driving past the town dump on a really hot, stinky day, from mixed up food scraped off into the garbage. And Corbin is also very sensitive. Words don't bounce off of him- he's too much like his Mama, I'm afraid.

Later when we were walking out the door Corbin looked up at me and said, "Mom, I think I need to go see a scientist." I asked why and he replied, "Maybe they can figure out why I throw up?" Poor thing. So, I'm hoping today goes better for him.

What about the lasts?

2009-10-22T18:33:00.003-04:00

As parents, we can't wait for all those firsts with our children. The first step, the first word, the first time they sleep through the night (my personal favorite). But what about the lasts?
Think about it. There is going to be a day when you can't scoop up your crying child into your arms because they are too heavy. There will be a time when your son won't want you to kiss him goodbye right in front of his friends. Don't you wish you would know when that exact last time was going to be, so you could cherish every second of it?
All parents concentrate on the firsts. But parents with children who have disabilities really linger on them. Why? Probably because we wait so much longer for them. We have to work so much harder for them. They don't come naturally. There is a lot of tears and heartache and sweat behind many of the firsts.
The upside to this battle? I get those lasts. I get them drawn out. No time soon will my kindergarten boy push his mama away. He lives for the physical contact. He craves the deep pressure hugs. I am his security blanket in this world that he has such a hard time figuring out.
This whole train of thought came to me this afternoon while Corbin, Brian, and I sat under a blanket on the couch reading books. Corbin was next to me while Brian was lying in my lap. I soon noticed his breathing had become very regular and he seemed a bit more limp. I leaned forward slightly to see his eyes closed and his mouth gaped open with a slight trace of drool in the corner of his lips. I looked at his sweet face. I traced the line of his cheek with my index finger. It had been awhile since he had fallen asleep on my lap. In fact I'm not sure if I could put a finger on the last time he had done so. So, I laid on that couch with him for a good thirty minutes. I wanted to cherish it. I don't know if it will be our last.

Sorry to Interrupt this Broadcast....

2009-10-22T09:03:00.002-04:00

....but if I hear another Yes on 1 radio commercial I am going to throw up. I generally don't use this blog to talk about things other than my family and autism, but I need to get this off my chest. I hope I don't alienate any of my readers but I feel very strongly on this issue.

For those of you who are not Maine citizens, Question 1 is a ballot question regarding homosexual marriage. The Yes on 1 commercials are so dramatic about how parents are soooo upset that their child learned a family could have two moms! **GASP** Honestly, I would be very upset if my children did not learn about ALL types of family. I know several families that have homosexual parents and I feel horrible for thier children that their families wouldn't be accepted in our public schools. What is it going to do to our children to learn about families that are different? Oh no, is it going to make them more tolerant? More caring? More accepting? Shame on our schools for wanting our children to grow like that.

Also I just love the line "We're not anti-gay, we're pro-marriage". Are you listening to yourselves? How can you claim to be "not anti-gay" but you don't want ALL of our fellow citizens to have all of the same RIGHTS? You are going to look at a homosexual couple and tell them they can't get married, they can't be listed as one another's spouse for insurance, benefits at work, or more- but you're not anti-gay? You are not going to give them the simple pleasure to know they are looked at as the same as a heterosexual couple?

I think it's a sad thing that the United States, all 50 states, haven't allowed this to happen. I like to think our past of discrimination and violence would open up to a path of equality for all. Isn't that what this country is all about?

Back to your regular programming.....

One Function for Each Item Please

2009-10-19T19:40:00.002-04:00

Today we decided to make a scarecrow for our festive holiday decor we have going on in our front yard. We tied rubber bands around the sleeves of a shirt and the legs of the pants. Corbin and Josh started filling up the pants with dry leaves while Brian and I decided to tackle the shirt. First Brian was holding the shirt up for me. First handful of leaves I put in he pulled the shirt up to his eyes and peered in, then looked at me, and then peered back in. The look on his face definitely made me giggle as I could tell that he was pondering this new activity.
He put in a few leaves and I left him while I piled some more leaves. I turn around to find him dumping out all the leaves. I reiterated to him what we were doing and he just started repeating "no, no, no", I let him off the hook and he rode his bike back and forth while we finished up the project. Even the finished product didn't grab his attention. He wasn't feeling the idea of shirts not being worn and being filled with leaves.
This is only one of many times that he has become upset because we used an item that he usually uses for one thing, but we are using it for another. It doesn't sit well with him. You can tell it really bugs him to the point where he just has to be done with whatever the new situation is.

Whose in control of this life anyways?

2009-10-18T23:13:00.004-04:00

I've been in school for nine weeks now. You would think by now I would've returned to some sense of normalcy within my family but I haven't. Not even close. I love my classes, I love what I'm learning, and I'm so excited to start a career in the occupational therapy field but I do not love the craziness, chaos, and complete lack of order that has happened in my home.

I'm completely exhausted all the time, yet of course have problems falling asleep at night. I forget things like putting an extra change of underwear in Brian's backpack. I completely lost Corbin's homework folder- I know I had it then poof it disapeared into thin air. My house is a wreck!! Josh and I just had our first "date night" in forever. My friends are complaining that I've dropped off the face of the planet. Everyone is picking out their clothes from the baskets of clean clothes rather than their bureaus.

I know this is normal and that I need to let some things go. Not every single aspect of my life can be "perfect" but I have issues with letting go of control. Hoping by the second semester this life of mine will feel like my own again.

Treating Autism with Marijuana

2009-10-13T08:43:00.003-04:00

I was shocked when I saw this headline. I'm a natural, wannabe-hippie type of girl. But I'm also a very much law-abiding type of girl. A girl who has seen a lot of her friends become, lack of better words, "losers" because of marijuana. But I also completely understand the medical need for marijuana and when used correctly I think it has tremendous benefits.

That being said, I don't think I'll jump on this bandwagon any time soon but I did find this a very interesting and very thought-provoking piece! I look forward to hearing your opinions!

He has autism and a medical marijuana license.
By Marie Myung-Ok Lee | Double x

Question: why are we giving our nine-year-old a marijuana cookie?

Answer: because he can’t figure out how to use a bong.

My son J has autism. He’s also had two serious surgeries for a spinal cord tumor and has an inflammatory bowel condition, all of which may be causing him pain, if he could tell us. He can say words, but many of them—”duck in the water, duck in the water”—don’t convey what he means. For a time, anti-inflammatory medication seemed to control his pain. But in the last year, it stopped working. He began to bite and to smack the glasses off my face. If you were in that much pain, you’d probably want to hit someone, too.

J’s school called my husband and me in for a meeting about J’s tantrums, which were affecting his ability to learn. The teachers were wearing tae kwon do arm pads to protect themselves against his biting. Their solution was to hand us a list of child psychiatrists. Since autistic children like J can’t exactly do talk therapy, this meant sedating, antipsychotic drugs like Risperdal—Thorazine for kids.

Last year, Risperdal was prescribed for more than 389,000 children—240,000 of them under the age of 12—for bipolar disorder, ADHD, autism, and other disorders. Yet the drug has never been tested for long-term safety in children and carries a severe warning of side effects. From 2000 to 2004, 45 pediatric deaths were attributed to Risperdal and five other popular drugs also classified as “atypical antipsychotics,” according to a review of FDA data by USA Today. When I canvassed parents of autistic children who take Risperdal, I didn’t hear a single story of an improvement that seemed worth the risks. A 2002 study specifically looking at the use of Risperdal for autism, in the New England Journal of Medicine, showed moderate improvements in “autistic irritation”—but if you read more closely, the study followed only 49 children over eight weeks, which, researchers admitted, “limits inferences about adverse effects.”

We met with J’s doctor, who’d read the studies and agreed: No Risperdal or its kin.

The school called us in again. What were we going to do, they asked. As a sometimes health writer and blogger, I was intrigued when a homeopath suggested medical marijuana. Cannabis has long-documented effects as an analgesic and an anxiety modulator. Best of all, it is safe. The homeopath referred me to a publication by the Autism Research Institute describing cases of reduced aggression, with no permanent side effects. Rats given 40 times the psychoactive level merely fall sleep. Dr. Lester Grinspoon, an emeritus professor of psychiatry at Harvard Medical School who has been researching cannabis for 40 years, says he has yet to encounter a case of marijuana causing a death, even from lung cancer.

A prescription drug called Marinol, which contains a synthetic cannabinoid, seemed mainstream enough to bring up with J’s doctor. I cannot say that with a few little pills, everything turned around. But after about a week of playing around with the dosage, J began garnering a few glowing school reports: “J was a pleasure have in speech class,” instead of “J had 300 aggressions today.”

But J tends to build tolerance to synthetics, and in a few months, we could see the aggressive behavior coming back. One night, I went to the meeting of a medical marijuana patient advocacy group on the campus of the college where I teach. The patients told me that Marinol couldn’t compare to marijuana, the plant, which has at least 60 cannabinoids to Marinol’s one.

Rhode Island, where we live, is one of 13 states where the use of medical marijuana is legal. But I was resistant. My late father was an anesthesiologist, and compared with the precise drugs he worked with, I know he would think marijuana to be ridiculously imprecise and unscientific. I looked at my son’s tie-dye socks (his avowed favorite). At his school, I was already the weirdo mom who packed lunches with organic kale and kimchi and wouldn’t let him eat any “fun” foods with artificial dyes. Now, I’d be the mom who shunned the standard operating procedure and gave her kid pot instead.

But then I thought back to when J was 18 months old. We were vacationing on the Cape, and, while he just had the slightest hitch in his gait, I was sure there was something wrong. His pediatrician laughed. I called back repeatedly until a different doctor agreed to see us. J was taken into emergency surgery, to remove a tumor that was on the verge of inflicting irreparable damage. Sometimes, you just have to go with your gut.

And yet, I still hesitated. The Marinol had been disorienting enough—no protocol to follow, just trying varying numbers of pills and hoping for the best. Now we were dealing with an illegal drug, one for which few evidence-based scientific studies existed precisely because it is an illegal drug. But when I sent J’s doctor the physician’s form that is mandatory for medical marijuana licensing, it came back signed. We underwent a background check with the Rhode Island Bureau of Criminal Identification, and J became the state’s youngest licensee.

Having a license, however, is different from having access to marijuana. While California has a network of “compassion centers,” basically pharmacy-like storefronts that provide quality product from registered growers, Rhode Island’s Republican governor has consistently vetoed that idea, in spite of the local stories of frail patients being mugged in downtown Providence as they go in search of pot. We weren’t about to purchase street marijuana, which could be contaminated with other drugs, so we looked into growing the pot ourselves. But by law, medical marijuana must be grown indoors, and it requires a separate room with a complex system of hydroponics, fans, and precise lighting schedules. (This made me wonder how much THC was actually in the spindly plants the high school goofballs I knew grew in their closets).

The coordinator of our patient group introduced us to a licensed grower. A recent horticulture school graduate, he’d figured out how to cultivate marijuana using a custom organic soil mix. His e-mail signature even quoted Rudolph Steiner. The grower arrived at our house with a knapsack containing jars of herbs. We opened the jars to sniff the different strains of “bud”—Blueberry, which did smell fleetingly of wild blueberries, and Sour Diesel, which had a rich, winey scent. The grower also had cured some leaves for tea, and he brought a glycerine tincture, a marijuana distillate in olive oil (yes, organic), cookies (ditto), and a strange machine that looked, fittingly, like a lava lamp. Basically an almost-bong, this vaporizer heated the cannabis without producing carcinogenic smoke.

For most adults, the vaporizer is the delivery method of choice, as it allows the patient to feel the effects immediately and adjust the dose precisely. J gamely put his mouth on the valve and let us squeeze a little smoke into him. It shot right back out his nose. He looked like Puff the Magic Dragon.

The grower left us with a month’s worth of marijuana tea, glycerine, and olive oil—and a cookie recipe. No buds. We paid $80. (Granted, we haven’t checked up on how much a nickel bag costs these days.)

We made the cookies with the marijuana olive oil, starting J off with half a small cookie, eaten after dinner. J normally goes to bed around 7:30 p.m.; by 6:30 he declared he was tired and conked out. We checked on him hourly. As we anxiously peeked in, half-expecting some red-eyed ogre from Reefer Madness to come leaping out at us, we saw instead that he was sleeping peacefully. Usually, his sleep is shallow and restless. J also woke up happy.

But in a few days, J decided he didn’t like the cookie anymore and smashed it with his fist. We brewed him the tea, which smelled funky and grassy. He slurped it down, but without much effect. Many of the psychoactive compounds in marijuana are fat soluble, so I added a dropperful of the oil that we used in the cookies. That made him sleepy-looking but still aggressive. It became clear that when J ingested pot orally, it took two hours to see the results, and by then there wasn’t much we could do to dial the dose up or down. The grower visited us again to give J another try at the bong, with little success.

But it was also possible that J needed a little time to get off the Marinol. After two weeks, we noticed a slight but consistent lessening of aggression. And he wasn’t nervously chewing holes in his shirts.

We are now a month or so into this, and it’s still too early to know if we can find a dose and mode of delivery that gives us consistent results. Even if J could learn to use the vaporizer, it costs $600, and would leave the house reeking of pot. And we don’t want to get too dependent, because of the inherent limitations. Though we’d love to calm J with pot so that he can visit his grandmother in Minnesota, bringing a controlled substance on the plane isn’t the best idea.

But since we started him on his “special tea,” J’s little face, which is sometimes a mask of pain, has softened. He smiles more. For the last year, his individual education plan at his special-needs school was full of blanks, recording “no progress” because he spent his whole day an irritated, frustrated mess. Now, April’s report shows real progress, including “two community outings with the absence of aggressions.”

The big test, so far, has been a visit from Grandma. The last time she came, over Christmas, J hit her during a tantrum. This time, we gave him his tea, mixing it with goji berries to mask any odor, although it occurs to me that my mother, a Korean immigrant, probably doesn’t even know what pot smells like (and it actually smells a lot like ssuk, a Korean medicinal herb). She remarked that J seems calmer. As we were preparing for a trip to the park, J disappeared, and we wondered if he was going to throw one of his tantrums. Instead, he returned with Grandma’s shoes, laying them in front of her, even carefully adjusting them so that they were parallel and easy to step into. He looked into her face, and smiled.

When I think of the embarrassment I may feel if my colleagues see this article, or teachers or parents at J’s school, or his less open-minded doctors, I pause. Although I occasionally smoked pot as a teenager (believe me, in northern Minnesota, there was not much else to do), now that I’m a law-abiding adult, all the scary anti-drug messages are flashing in my brain. But when I researched cannabis the way I did conventional drugs, it seemed clear to me that marijuana at the very least wouldn’t harm J, and might help. It’s strange, I’ve come to think, that the virtues of such a useful and harmless botanical have been so clouded by stigma. Even the limited studies that have been done suggest marijuana’s potential as an adjunctive therapy for cancer. Marijuana, you need some rebranding. Maybe a cool new name.

Meanwhile, in treating J with pot, we are following the law—and the Hippocratic oath: primum, non nocere. First, do no harm. The drugs that our insurance would pay for—and that the people around us would support without question—pose real risks to children. For now, we’re sticking with the weed.

Why I Give My 9-Year-Old Pot, Part II

He has autism and terrible pain. Marijuana is taming his demons.

Last spring, I wrote about applying for a medical marijuana license for my autistic, allergic 9-year-old son, J., in hopes of soothing his gut pain and anxiety, the roots of the behavioral demons that caused him to lash out at others and himself. After reading studies of how cannabis can ease pain and worry, and in consultation with his doctor, we decided to give it a try. A month into daily cannabis tea and mj-oil cookies (my husband discovered his inner baker), I reported, we both felt that J. seemed happier. But it was hard to tell. He’d have a good morning, then at dinner he’d throw his food. Still, we did notice that when he came home from school with stomach pain (he wasn’t getting any supplemental cannabis there), he’d run to the kitchen and demand his tea and cookie. As if he knew this was the stuff that dulled the hellish gut pangs.

How is J. doing now, four months into our cannabis experiment? Well, one day recently, he came home from school, and I noticed something really different: He had a whole shirt on.

Pre-pot, J. ate things that weren’t food. There’s a name for this: pica. (Pregnant women are known to pica on chalk and laundry starch.) J. chewed the collar of his T-shirts while stealthily deconstructing them from the bottom up, teasing apart and then swallowing the threads. By the time I picked him up from the bus stop after school, the front half of his shirt was gone. His pica become so uncontrollable we couldn’t let him sleep with a pajama top (it would be gone by morning) or a pillow (ditto the case and the stuffing). An antique family quilt was reduced to fabric strips, and he even managed to eat holes in a fleece blanket—so much for his organic diet. I started dressing him only in organic cotton shirts, but we couldn’t support the cost of a new one every day. The worst part was watching him scream in pain on the toilet, when what went in had to come out. I had nightmares about long threads knotting in digestive organs. (TMI? Welcome to our life!)

Almost immediately after we started the cannabis, the pica stopped. Just stopped. J. now sleeps with his organic wool-and-cotton, hypoallergenic, temptingly chewable comforter. He pulls it up to his chin at night and declares, “I’m cozy!”

Next, we started seeing changes in J.’s school reports. His curriculum is based on a therapy called Applied Behavioral Analysis, which involves, as the name implies, meticulous analysis of data. At one parent meeting in August (J. is on an extended school year), his teacher excitedly presented his June-July “aggression” chart. An aggression is defined as any attempt or instance of hitting, kicking, biting, or pinching another person. For the past year, he’d consistently had 30 to 50 aggressions in a school day, with a one-time high of 300. The charts for June through July, by contrast, showed he was actually having days—sometimes one after another—with zero aggressions.

More evidence: the bus. For the last few years, the arrival of J.’s school bus had been the most traumatic and unpredictable moment of our day. J. has run onto the bus and hit the driver in the face. He has scuffled with the aides and tried to bite them. His behavior brought out the worst in people: One bus monitor (we joked that her personality better suited her for a job at the local prison) seemed to dislike all the kids but treated him with particular contempt, even calling him names, once in front of us.

But the summer brought a new set of aides and driver. It hit me that these folks knew only “Cannabis J.”—a sparkly-eyed boy who says hi to them each morning, goes quietly to his seat, even tries to help put his snap-on harness on.

One day, J.’s regular aide was sick, and a lady with a wacky smile lovingly escorted J. off the bus. There was something familiar about her; once I superimposed a hateful frown on her face, I burst out to my husband, as the bus snorted away, “It was her, wasn’t it?” We laughed as J. looked on. “Funny!” he said.

There’s a twist to the happy marijuana story, though. While the cannabis has eased J.’s most overwhelming problem, his autism has become more distinct. As the school data show, his aggressive behavior is far less frequent, but his outbursts—vocalizations that include screams, barking, yips of happiness—remain. When J. was in his dark phase, we spent our time out of sight, out of mind, inside our house with a screeching, violent, food-and-dish-flinging J. The sounds were contained by double-paned windows (when they weren’t broken). Now, within our family, we’ve reached a lovely homeostasis: household goods unbroken, our arms and J.’s face unscratched. But as we venture outside to play in the yard, take after-dinner walks, or ride with J. on our tandem bike, we can see that the people in the neighborhood know our family is different, and that this is not always to their liking.

Our closest neighbors (on one side, we could probably pass them a pie from our kitchen) have always been understanding. But on the next street, a man stops playing ball with his son when he sees us, and pushes his boy into the house as we approach, turning his back on J.’s cheery “hel-llooo!” He is the man we suspect yells at us—from behind other houses, so we can’t see him—when J. sometimes vocalizes a bit loudly outside. Then there’s the mom with the son about J.’s age (who, incidentally, sounds exactly like J. when he screams). She won’t make eye contact when we pass, and pointedly ignored a party invitation from us. I’ve also heard, from behind a fence of a family who stares at us but never says hi, “Oh, that’s J.”

And so sometimes we feel a bit the victims of a 21st-century shunning. In the larger context, however, these are small annoyances from small people. The chair of my department invites J. to her yard so he can play in her outdoor pool and lets him vocalize to her neighbors, who do not complain. A mini-gang of too-cool teen boys walks by our short fence after school and always greets J. sincerely, as he calls out adoringly, “Hi, hi, HIIIIIIIIII!” I am grateful that the cannabis has given J. the chance to get out and experience life. If it sometimes punches him back, it also offers him flowers.

I don’t consider marijuana a miracle cure for autism. But as an amateur herbalist, I do consider it a wonderful, safe botanical that allows J. to participate more fully in life without the dangers and sometimes permanent side effects of pharmaceutical drugs; now that we have a good dose and a good strain. (“White Russian”—a favorite of cancer patients, who also need relief from extreme pain). Free from pain, J. can go to school and learn. And his violent behavior won’t put him in the local children’s psychiatric hospital—a scenario all too common among his peers.

A friend whose child was once diagnosed with autism, but no longer (he attends school at his grade level and had three developmental assessments showing he no longer merits the diagnosis), wanted to embark on a kind of karmic mission to help other children. After extensive research, she landed on cannabis the way I had. “It has dramatic implications for the autism community,” she says, and it’s true. We have pictures of J. from a year ago when he would actually claw at his own face. None of the experts had a clue what to do. That little child with the horrifically bleeding and scabbed face looks to us now like a visitor from another world. The J. we know now doesn’t look stoned. He just looks like a happy little boy.

And cannabis still can surprise us. We worried that “the munchies” would severely aggravate J.’s problems with overeating in response to his stomach pangs. Instead, the marijuana seems to have modulated these symptoms. Perhaps the pain signals from his stomach were coming through as hunger. J. still can get overexcited if he likes a food too much, so sometimes when he’s eating my husband and I leave the room to minimize distractions. The other day, we dared to experiment with doenjang, a fermented tofu soup that he used to love as a baby. The last time we tried it, a year ago, he’d frisbeed the bowl against a tile wall. (Oh, smelly doenjang soup and the million ways it can make a mess.)

We left J. in the kitchen with his steamy bowl and went to the adjoining room. We waited. We heard the spoon ding against the bowl. Satisfied slurpy noises. Then a strange noise that we couldn’t identify. A chkka chkka chkkka bsssshhht doinnng! We returned to the kitchen, half expecting to see the walls painted with doenjang. Everything was clean. The bowl and spoon, however, were gone.

J. had taken his dishes to the sink, rinsed them, and put them in the dishwasher—something we’d never shown him how to do, though he must have watched us do it a million times. In four months, he’d gone from a boy we couldn’t feed to a boy who could feed himself and clean up after. The sight of the bowl, not quite rinsed, but almost, was one of the sweetest sights of my parental life. I expect more to come.

Doesn't the School's Policies Apply to Everyone??

2009-10-08T16:04:00.008-04:00

Today, I was standing in line at the school to sign out my children. They dismissed the walkers and I could hear Brian from all the way at the end of the hallway, crying. Even though I've never picked him up crying before, I still didn't feel alarmed. I know that he sometimes is very sensitive and has a hard time with some things. But I do have a problem with him seeing me in line and saying "Mama" in between tears and his ed tech being so unaware of him that she is still pulling him into the cafeteria (they were holding hands) while he is trying to pull towards me. I silently watched for about ten seconds, waiting to see if she'd actually take time to "listen" to him- he may not be speaking his needs but his body language was certainly showing he knew I was right there in the hall and he didn't want to go in the cafeteria. I shouted her name and she looked up in shock and said, "Oh Brian, there's your Mom" before letting go of his hand.

He ran to me and gave me a huge hug. Heat was generating off of him. I asked her why he was crying. She replied, "I don't know- he's just been cranky all afternoon". I said, "Well he feels really warm". She replied, "Yeah, maybe he's not feeling well, he's had that stuffy nose" (which he has had for a couple days now). I didn't say anything else and just left.

We came home and I settled him on the couch with Wall-E and a blanket and he's been lying there ever since. I took his temperature and it's just a low-grade fever- about 99.6....BUT if Corbin or any other student at that school said, "I don't feel well", they would be sent to the nurse and she'd take their temperature. If it was even a little bit high the parents would be called. I know the school's policies. So, because Brian can't verbally express that he isn't feeling well that policy shouldn't be followed?

Maybe I'm feeling overprotective- Josh often tells me that no school anywhere could hire an ed tech that I would fully approve of. But I'm feeling aggravated about it, none the less- probably even more so because I think I'm coming down with a cold as well.

The Elephant

2009-10-07T18:49:00.004-04:00

I was read a wonderful children's book the other day, The Blind Men and the Elephant. This story is a classic, yet I had never heard it before. It has been written and rewritten by many different authors.

The story goes that an emperor aquires an elephant and six blind men decide they want to go "see" the elephant because they have never touched one before. Each blind man touches a different part of the elephant, so each one thinks the elephant is like something different than the others. They begin to fight about it and the emperor intervenes and tells them that they each only know about one part of the elephant, not the whole animal.

Obviously, this book is about not knowing somebody because of one thing about them. We were regarding it in my occupational therapy classes as just because we know someone has a disability does not mean we know everything about that person.

I'm definitely buying this to add to my own children's library.

Final Horse Show

2009-10-04T09:30:00.004-04:00

Yesterday was the End of the Year Horse Show at Freedom Riders. Brian hasn't been able to attend his weekly riding lesson since school has started- it just didn't fit into our schedule and being almost the end of the season they couldn't change his time slot. Yet, of course, they allowed him to participate in this last show.
Since it had been a few weeks since we have been to the stables I was a little bit apprehensive about how he would do. No need to worry. As soon as we pulled in, his face lit up, and he couldn't get on his horse quick enough. He was lucky, too, to still have his favorite horse to ride, Xanadu.
Seeing him climb on that horse and beam this incredible smile out to the audience brought tears to my eyes. I love that he has an activity that he gets so much joy from! Not to mention the fun that he realizes he is having he is also working on his balance, core strength, receptive language, expressive language, fine motor skills, gross motor skills, confidence, and more.

High Hopes Clubhouse

2009-10-02T11:21:00.003-04:00

Yesterday, in my Psychology class, I attended a presentation on the High Hopes Clubhouse in Waterville, Maine. The name is certainly accurate as it definitely raised my hopes about different opportunities given in Maine.

Clubhouses follow international standards. They consist of minimum staff and members- individuals with mental illnesses that decide on their own to seek these services. They are completely run by their members. The staff and members work together as co-workers. They help with the taking care of the house, meal preparation, paying bills, doing paperwork, giving orientations, etc. All the tasks in the home are meaningful.

The Clubhouse's main goal is to help their members return to work or even get their first job ever! Yet, they don't push it if their members are not ready to be in a social environment. It's completely each individual's decision to decide when they are ready. The Clubhouse helps their members attain employment, the staff trains on the job so they can teach the members before they start. The staff will guarantee the employer to cover the member's spot if they needed to be hospitalized. The Clubhouse also offers after-work-hours social meetings and parties. They help with transportation to work. They help with housing. After the seminar I felt almost like there wasn't anything they wouldn't offer!

There are actually two Clubhouses in Maine right now- the other is in Augusta and is called the Capitol Clubhouse.

The Phenol Effect

2009-09-29T20:50:00.002-04:00

Two months ago we decided to remove phenols as much as possible in Brian's diet and see if there would be any effect.
It definitely seemed to help with his mood swings he was having at the time as well as sleep. I was having many nights in a row of non-interrupted sleep. Bliss!
This past Saturday we decided to go apple picking. Apples are very high in phenols and also one of the food items Brian was previously "addicted" to. I decided to just let him have some apples- it couldn't be that bad, right?
Well Saturday, Sunday, and Monday Brian had an apple each day as well as a glass of apple cider. All three nights he has been up for hours at a time and yesterday he had huge, tears running down his face, meltdowns for simple things that don't usually unnerve him- like coming in from outside, putting his stuff away, etc.
I hate to see him so upset like that but it's nice to know that steps I take are working. Back to no phenols!

First Tooth

2009-09-23T18:43:00.001-04:00

Brian lost his first tooth last week! The bummer of it all is I have no idea when or where he lost it. Don't worry the tooth fairy still came but I don't have my baby's first tooth to put away with all his little treasures. It's funny how you don't think about these little things until they happen but I got to wondering if I'd ever get one of his little baby teeth to save? At the stage where he is now he wouldn't know to bring me the tooth or even tell me if it was wiggly. Oh and by the way, Corbin is quite jealous because he hasn't lost his first one yet!!

Ups & Downs of Transitioning

2009-09-07T13:14:00.003-04:00

During my online absence the boys had their first day of school.

Leading up to that day was full of stress, anxiety, unanswered questions, and anger. When we had our transition meeting for Brian last spring I was hopeful with all of the promises they had made to help make the transition for Brian go smoothly. Unfortunately all of those promises didn't happen as they were suppose to. I was extremely angry and was not looking forward to that first day of school.

I tried to put aside my own feelings so they wouldn't rub off on Brian. We arrived at the first day and I stayed with him until about noon. He really adjusted really well. He certainly surpassed what I had anticipated to happen that day. He continued to do well during his whole first week. Never needing to be removed from the general-ed room because of behaviors or disturbing the other kids. He has been removed a time or two a day as a reward, he gets to go in the special ed room to run around and be loud and get out all that crazy energy he has.

I'm in the process of putting on my finishing touches to my formal complaint letter to be sending to the principal, superintendent, and anyone else I feel should hear it and have set up a meeting in a couple of weeks. I think I'm happy with his placement, with his teacher and the special-needs teacher, but I can't just let it go that my wishes weren't respected before the school year started.

I'm subbing tomorrow at the preschool but am hoping to go again for a couple hours to just check in and see how he's continuing to adjust.

Oh, and Corbin is doing wonderful :) He's center of attention, social climber, and mad that he isn't learning anything new yet. He cracks me up every single day and I love hearing his stories everyday after school.

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Have this great link to share for forms you can print out to use with your child's teacher to stay informed on how they are doing in school- Teacher Handouts from the Autism Society

You Are My Sunshine

2009-09-04T20:10:00.003-04:00

Your Mom Goes to College

2009-09-04T17:28:00.009-04:00

An explanatory blog to let all my readers know where I disappeared to without even a word beforehand. The biggest reason I haven't been posting is my wireless adapter just stopped working- I have resolved that issue now.

The second reason is I have returned to college full-time two weeks ago. I'm not going to lie- it's taking up a huge part of my life right now. We've been rearranging everyone's schedules, figuring out finances as I'm not working five days a week anymore, and trying to learn, as a family, how we can all help each other out more.

I'm in an occupational therapy assistant program and am LOVING it so far. Yes, the course load is huge, but I'm so eager to learn! I enjoy the challenge of working hard for a goal I really want.

Now that the internet is back up and running here I will be trying to post a few blogs regarding the boys returning to school in between writing several english essays.

Hope everyone is doing well out there in the blogging world!

Could it be 1 in 58 children?

2009-08-10T16:37:00.003-04:00

Check out this post at Age of Autism.

This scares me. Really scares me. I don't understand why the CDC and the AAP can't see that there is an exponential rise going on and something, besides genetics, has to be playing a part to make a number rise in such a way.

27 Things I Love

2009-08-09T23:01:00.000-04:00

In honor of me turning 27 on Friday I put together a list of 27 things I love. Completely materialistic type of things. No sappiness in this post.

1. I love yoga pants! I wish I could live in them everyday! Really this is the year that I've become comfortable enough with my bootylicious bottom to wear these type of pants.

2. Pepsi Max. A totally love/hate relationship as the caffeine in it always triggers my anxiety attacks. Always addicted to the things that are bad for you.

3. Trashy reality TV. I try to be a deep person, really, but these shows suck me in.

4. Facebook.

5. My camera- can't go anywhere without it.

6. Mascara- the only item of make-up that I wear every single day.

7. The library. I love books- I love to just walk around and touch all the different books. Weird, I know.

8. Finding a new delicious GFCF recipe!

9. Flossing- weird but I love to do it.

10. Fans- I love to be just a little bit too cold when going to sleep.

11. My bedding.

12. Finding new independent songs that "no one" has heard yet.

13. Karaoke.

14. Guitar Hero.

15. SALES! Nothing like getting a good bargain.

16. Organization. Yet I'm totally unorganized, I don't get it.

17. Sunglasses. Big ones, aviator ones, colored ones, I love them all.

18. My two D&G striped tote bags.

19. Getting dressed up and having no where to go.

20. Big earrings.

21. Planning parties/get-togethers.

22. Feeling independent. I hate to rely on people and it could be a fault to a point sometimes.

23. Funny, sarcastic, ackward humor.

24. Crosswords & Suduko.

25. Spider Solitaire on the computer- absolutely addicted. I have a game of it up at all times.

26. Mini laptops- which I will be getting one in a couple weeks. Can't decide on what color I want though :)

27. Coffee ice cream w/peanut butter cups mixed into it.

Drinking from Invisible Glasses

2009-08-06T22:13:00.002-04:00

Today Corbin surprised me by building me a beautiful house. A house made of pillows and blankets in the middle of our livingroom. I climbed inside and immediately Brian & Corbin joined me. I welcomed my guests and told them to make themselves comfortable and I'd get some "cake & tea".

Brian started to climb out of the fort towards the kitchen saying, "Cake, cake". I gently pulled him back in and said, "We're pretending Brian!" I handed Corbin some invisible cake and I took a bite of mine. I handed Brian a piece and he bit into it, imitating Corbin & myself. Not a surprise- nothing new there, he is a mimic.

Next I turned to Brian and said, "Would you like a drink?" Brian said, "Drink." But he didn't move towards the kitchen this time. I handed him an imaginary glass, he lifted the "glass" to his lips, and made an exagerrated swallowing sound. Completely independent. He didn't see anyone do that first. He caught on to our game and PRETENDED to drink from an IMAGINARY glass.

Huge, just huge.

Freedom Riders Online

2009-08-06T19:02:00.002-04:00

Freedom Riders, the therapeutic riding organization that Brian goes to, is celebrating 25 years. In honor of that several of our local newspapers did articles on what they do there and to advertise their open house coming up. The Free Press ran some pictures of Brian riding and feeding his pal, Xanadu, along with their article. Check out the link to see! :)

Mainely Autism

2009-08-06T18:52:00.002-04:00

So I'm trying to start another blog, Mainely Autism, because I have so much spare time on my hands, y'know? It's under construction but I wanted to get the word out there.

The blog is just going to be an ongoing information board for individuals and families with ASD- a place that will list workshops, services, providers, activities, etc. happening here in Maine. A kind of one-stop place for Maine families.

Contributions are more than welcome as I am just one person and obviously can't always know everything that is going on or that is available!