Saturday, May 31, 2008

A little background on the boy!

I'm kinda busy today so I don't have much time to write a thoughtful entry but thought I would share an article I got to write for a publication a friend of mine creates and edits. This particular issue focused on Early Intervention.

We're on page 6. Enjoy!

http://www.scribd.com/doc/3184194/Start-Magazine

Friday, May 30, 2008

Does Acceptance Make Life More Tolerable?

Lately as discussed in a previous blog, I have found myself being more and more a supporter and member of a movement known in certain circles as Autism Acceptance. I was led by the Autism DIva herself to the Autism Hub after I had commented on her Youtube contributions, and explained my feelings on how it always seems I'm on a mission to change Casey's Autism. The Autism Hub has featured bloggers whose subject matter pertains mostly to their children or themselves if they are an Autistic adult, and their day to day triumphs, disappointments, funny stories, opinions, and the latest news pertaining to Autism and their thoughts on that news. You rarely find reference in these blogs to what sort of diet they live to have their kid on (although some do various well-known diets because they help with their child's health, not because they are trying to "cure" them). You will not find someone discussing how a certain supplement made their child speak suddenly in paragraphs. Quite the opposite, some of them will mention their past experiences with such supplements, and how nothing really happened.

It seems what they are all about is accepting their children and themselves for who they are, working with them to make them the best they can be, and most importantly I think, enjoying their children, taking each day as it comes. Which brings me to something I've thinking about for the last couple of days after running into someone.

This lady that I run into often mostly due to the locale of our homes and sharing a school, has 3 children, triplets, 2 Autistic, one not. The 2 that are, for lack of a better way of saying it, are pretty Autistic. They have been in the same program that Case is in, and he has even been in a classroom with one of them. Needless, to say, this woman always looks frazzled, a little on edge, and nervous. From all accounts, her life is excruciatingly busy with three 9 year olds. The child who is not Autistic goes to a different school than her siblings. I have listened to this woman's stories over the years, and they've always made me appreciate the fact that Casey is pretty good for the most part as far as Autistic kids go, and the fact that we only have 1 child in general. Stories of long nights of one of them always being awake, endless attempts at various biomed interventions that emptied their already almost empty pockets and never really worked, constant behaviours that would drive a lesser person crazy, maybe it already has and she's just holding it together. It's from all outward appearances a challenging existence with these children.

This brings me back then to the whole Autism Acceptance Movement. For me, reading about the different families that have supported this movement has given me a new piece of mind, has sort lifted a load off my psyche if you will. It also helps because it has made me appreciate more all the wonderful things about Casey while pushing his Autistic stuff under the doormat so to speak. Now, that Autistic stuff isn't huge, it's everyday irritations that we deal with and hope go away. But for someone like this mom of triplets, I would have to wonder how she could ever be one to tout the benefits of Acceptance, or benefit from being in a frame of mind such as this. When your life is turned topsy turvy and it's not your own anymore, how can you go "Hey, I'm accepting my child as she/he is and sod it all!".

Which has lead me to reading more blogs on the Autism Hub, and lo and behold, there are parents with children, sometimes multiple children on the spectrum, on the lower end of it, equally as busy as this woman's children. The more challenging kids. But they seem to sort of think"to hell with it, to hell with trying to cure them. They are who they are.". And for this, I give them lots of credit. These parents seem to laugh in the face of pain, heartbreak, challenge, difficulty. Perhaps for them, that is life, they've never known anything different, which is sort of our case, never having other children and especially ones that are typical. Maybe for them, like me, it's easier to live day to day, and try to get the best out of things, no matter what level that "best" is , and not think about what could have been and what could be if we did this or that, or gave this vitamin or did this diet. We are all on a spectrum of some sort.

So, having said all this, I don't think this mom of 3 knows of the Autism Acceptance Movement, or would really appreciate it. And that's ok, everyone is different. But I can't help but wonder if her life might be a little different, a little more bearable, if someone put a bug in her ear and lead her to, perhaps Autism Hub. Now what was her email address again, I know I had it somewhere....

Thursday, May 29, 2008

Subs, Tiki Torches, Cancellations and Other Good Thingss


Do you ever have one of those days where things keep rolling in your favor? I don't often but today was that way for me, so I'm allowing one entry specifically about myself!

The day started early in preparation for my working with a muckity muck from my company who I was supposed to meet up with. It was a gorgeous sunny day by the way. After getting Case on the bus, I quickly drove off, knowing I would be late meeting the guy. I was dredding the "work with" a bit. I call on gas stations and small drug stores as part of my job, and I work alone, so when you have someone "tagging" along as it were, watching your every move, it can be a bit exhausting on so many levels. It's stressful as well, wondering if the person might go back to your boss and tell them they weren't happy with this or that. Anyhoot, my cell rang and it was this person. I quickly answered "Hi, I'm sorry, I'm almost there!" Traffic was horrendous, of course. "Hey, don't rush, I'm not there," he replied "something came up and I'm going to have to cancel!". Feigning disappointment, I wished him a good day and said I looked forward to working with him in the future. The sun got a little brighter!

Soon, I was rolling with my work, getting a lot done in each account and was given a granola bar that I tried to purchase by one of my store owners, and later, offered a free bottle of whatever (damn, no booze though) for doing so much for another. Gee, that just saved me a couple of bucks!

As the afternoon progressed, one of my best girlfriends called, and the conversation turned to her birthday, which had eluded me for some reason. After much discussion concerning what wasn't going on for her birthday, I decided it would be fun to have her and her family over to celebrate at our home, with the bonus of having the Stanley Cup Playoff game on that very Saturday night for the boys to watch! Yay, plans for the weekend and we don't even have to leave home!

Later, I called on one of my bigger accounts, ok, I'll say it, Walmart. Feeling like my free and much appreciated granola bar wasn't holding me over any longer, I cruised over to the Subway in the store for a quick lunch. Low and behold, who was there to ring me up but a guy who used to work in one of my other accounts and now managed the Subway! He greeted me and said "Don't worry about!" as I handed him my credit card (what's cash?). Declining politely, he insisted, I accepted, and off I went with my happy free little lunch!

A huge store next door full of all kinds of gardening junk, furniture, home goods and what not was my next destination, strictly for pleasure. I had nothing big in mind to purchase but it's one of those stores you just have to go into if you're near it. After walking it's labyrinthlike aisles, I came upon tiki torches which we needed for summer festivities in our backyard. And guess what!? They were buy one, get one 50% OFF! And were only 2.99 to start with! Could it get much better? Yes because then I found part of a gift for my aforementioned friends' birthday, and she is not easy to buy for! Yet, another couple of lucky breaks.

I better not jinx myself wondering what else good could happen today, but ya never know. Maybe I should go buy a lottery ticket......

Wednesday, May 28, 2008

Morning Rituals


Are mornings more frustrating for parents with Autistic children, or are typical kids equally as challenging? Or, is it an individual situation for all? Or is it just my kid who makes the arrival of the bus a reason to jump for joy? For us, the mornings are a chain of daily but always frustrating events.

It starts with just getting him up. My limit to have him up and sitting at the counter allegedly eating breakfast is 7:40. So if he isn't already laying in bed watching a movie since 6am, the gentle rousing starts by 7:20. It's a gentle process. Some mornings are good, he's cute, cuddly, sleepy, responding back a happy good morning to my wake up kisses. Other mornings, he wakes saying he hears voices, crying (still don't know what this is all about). Some mornings ya just know aren't going to be great when he starts out "I don't have school today!". The back and forth begins "Yes you do, why would you not have school?". "Because school is for babies and Coolidge is for babies!". Blah blah blah.... Finally, his long frame stretches and he rolls out to the kitchen.

So now, he's finally at the breakfast bar, breakfast in front of him, legs bent on barstool, gazing at Good Morning America. "Case, take your probiotic and eat." I instruct. 2 minutes later "Bathroom!". Off he goes, goes, then I see him head back into his room. "Case come back and eat your breakfast!". Here he comes again, back in position. He finally swallows the tiny probiotic, and takes a bit of bacon, becoming entranced in the tv. "Eat please". It's now 7:50, the bus comes at 8:20, that leaves us one half hour to finish eating, dress, hygiene, and whatever else we forgot. "Casey, eat!". This is said at least 5 times a morning, all the while, finding myself poking bites into his mouth. He's 9 years old! Ugh.

Breakfast is finally done and the chase begins to keep him from laying back in bed to watch tv. He literally lays down like it's Saturday and is ready to settle in for a lazy morn. "Come on Case, the bus is coming, let's get dressed." Bill gets frustrated with me that I don't let him dress himself in the morning but oh my, thats another whole blog entry, and I choose to pick my battles when they fit my schedule! I finally get him out of bed after much prodding, and help him dress, making him at least put his own socks on. Good for me, good for him.

Two to three times I urge him to come to the bathroom to brush hair and teeth. Finally loping in, I help him brush. He's almost 10 but heightwise we are just about face to face, making it awkward to help him brush, reminding me that I really need to work to make that an independent activity and soon. I wet and mousse the crazy mass of hair that he didn't get from my genes. He needs a haircut...

Finally, we plop down on the couch, 5 minutes till the bus. We did it again, we got through it.

Tuesday, May 27, 2008

Just another night in Autismville....


Not many people think about taking their kids to "bars" but we do, we can. Here in Michigan, kids can dine with their family up until 9pm in places that others would think kids could never step foot in. We took Casey to such an establishment the other night.

We enjoy taking him to these places because they almost always have lots of tvs, and video games. This is perfect for him, a sensory overload that he loves and lends to everyone involved having a great time out together. The bar we went to fit the bill, 10 televisions encircling us, a wall of video games aglow. This idilic mecca however, became somewhat of an impediment it seems, as our son is becoming more acutely aware of the details of his obsessions.

Three very important sporting events were on that night, one less important than the other 2, but taking up a couple of tv screens nontheless. One of the events was supposed to be on at 7pm (time is becoming quite important to Casey) and it was on channel 7 (his favorite channel at the moment) and not one television had it on. This was a playoff game for our Detroit Pistons so we were suprised it wasn't on either, and Casey was well, mortified. He even went so far as to gather the attention of a few of the waitresses before we knew what he was doing, to demand (there are no requests with Casey) that someone turn one of the tvs to channel 7! They were befuddled, we were a little embarressed and no changes in the matter were accomplished.

This lead to a series of laps around the bar to each televison not in his view to see if his beloved channel 7 was on one of them. Needless to say, it was busy there, waitresses dodging back and forth, Casey dodging in between them, in between tables, in between customers. Bill and me, chasing him, trying to make him sit down and get out of the way.

He finally found one console that had channel 7 on it. Of course, it was out of sight of our table, facing the pool tables and dart boards, where, you guessed it, people were in fact playing pool and darts. Just where you want a giant 9 year old standing in the middle of your line of shot jumping in excitement at the channel 7 emblem in the corner of the tv! Needless to say, we had to make him sit several times, and we were just plum exhausted.

Casey finally settled down to eat his fries, but suddenly broke into crocodile tears as if pinched quite violently. "What is wrong?!" I inquired impatiently, really wanting to enjoy my meal finally. "I can't watch channel 7 while I eat!" he cried sadly. Ugh.

After things were finally cleared, I used the 9pm time limit to excuse ourselves from the establishment, leaving Bill with some friends to watch in peace. Riding home, I felt beat down and a little bummed that our bar idea wasn't fun at all this time, and that once again Casey's Autism got the best of things.

We had the radio on and the Who's "Who are You?" came on, causing Casey to start moving furiously in his dancey, stemmy way. Disgusted with the whole evening, I said more to myself than him "See, I shouldn't have let you drink Sprite. Now you're all jazzed up!".

"I'm not jazzed up on Sprite mom, I'm jazzed on the music!" he jauntily replied doing his Casey moves even more energetically.

A sentence like that doesn't often come easily for Casey, and somehow, in that simple little sweet and funny reply, the angst of the evening suddenly left my mind, and I savored the silliness and clarity of his thought.....I took a deep breath, and let the nights events get pushed out the window in the new summer's breeze.

Friday, May 23, 2008

Offensive?

I was watching the news last night when a story came on about a rape occuring at a local highschool between 2 students in a stairwell that is off limits to everyone but staff. Much of the report focused on kids and parents commenting on "how could this happen", "where were the hall monitors?"...as they wrapped up the report, the reporter covering closed by saying something to the effect of "it should be known that the 2 students involved are in some special education classes. Mike Whoever, Local 7 News."


Hhhhmmmm, I thought, did he just say what I think he did? Did he just say that the students were involved in special education classes? What the hell? What could that possibly have to do with the matter at hand, one student raped another student! That reporter would never say "and it should be known that the 2 students involved were African American." or "Hindu" or Puerto Rican. I just couldn't imagine what his point was in saying this!

I mean, are we supposed to surmise from know this that it was a totally unusual situation? Were we supposed to think "Oh, they must have been mentally retarded, they didn't know the difference!". I can't say enough that I don't get why he would make a point of relaying that information.

I emailed the studio I felt so strongly about this. I noted that in the 7pm newscast they replayed the story, but that part was left out. Coincidence? Maybe others were offended as well. I don't know, am I wrong to be so offended?

Where does this child belong?

It's been awhile since I blogged, but it seems these last weeks of school and a few other activities Casey is involved, plus work, has taken up a lot of time. I find myself reading others thinking "Gee, I need to blog" and then get distracted.

Not that there isn't lots to talk about, so many things changing for Case. So many things in the works, summer, camp, Indy visits. I guess the biggest issue is considering and then acting upon changing what we sorta established last week as his educational plan for next year in his IEP.

Ever since I went to visit his new school next year, I have had trepedations about moving him into the same situation he's in now- part of the day in the Autism program, part in regular ed. But, after seeing the room that I thought that he would be in for AI (this is the term they use for the Autism program), I basically shed tears, thinking I was sorta setting him up for the rest of his career in school to be obtaining lifeskills and not a lot of emphasis on being "diploma bound" if you will. I am not putting down a lifeskills curriculum for some kids, it's reality, it's what will work for them, and hopefully make their adult lives tolerable and happy. But I want to find out if Case could do more than that, I want to see if maybe, just maybe, he could go to college, he could have a career. Who knows. But I know deep down, if I keep him in the AI program, I probably won't see that happen if it is possible.

We had the IEP though, and we basically signed off on another year of the same, I think more out of familiarity, uncertainty, security. THis will be a new school, 5th graders are bigger, more mature. Did I want him around them all day had I done things differently on the IEP. We left feeling ok about things, but I still have an itch that I can't scratch. One that is telling me that we didnt' make the right move for Casey, considering what we want for him.

I had avoided my dear friend who is an activist in the field of inclusion in our school district. Her son is a year older than Casey, incredibly intelligent, but still having some issues, and his verbals skills are still a work in progress. But she's had him in full on regular ed for the past 3 years, and doing fine. She has always encouraged me to do the same. But I have so much fear about it, would he get services if he wasn't in a special program, would he have to ride the regular bus with regular kids who picked on him? WOuld have a good paraprofessional that would work with him, not for him, but still make sure he wasnt' getting beat up in the bathroom or on the playground. All these thoughts have held me back, despite the fact that my friend has never reported such issues about her son's situation. I hadn't spoken to her about much of anything, for fear she would lull me into wanting to change things for him.

Stupid me called her the other day, and of course being the awesome, on top of things person that she is, knew I had had our IEP. I told her the whole story, and of course, she started on me:
"So, you are going to put him in a program that left you in
tears after you saw it?".
Stunned silence......
"yeah" I replied, in a stupid child to her mother after doing something dumb and having to answer to it.
"Hhhmmm" she replied without really saying anything but everything.

The conversation continued, and in short, she has offered to be an advocate if we wanted to get him in regular ed and do it right.

I can't stop thinking about it now, and will continue this train of thought later......

Friday, May 9, 2008

Surprising social situation!


Last night they had an Art Show at my son's school. I like to take him to things like that because a) he loves to peruse the hallways when he's not expected to do anything or be anywhere at the time and b) the kids in his regular ed class always make a point of saying "Hi" to him and slapping him a high five! I want him to feel like he has connections, even if they are briefly supported in this way. And thusly, he had this occur several times last night.

But I got a little bit of an uplifting surprise when we were out on the playground with a number of other kids taking adavantage of the play structures. Case was climbing around on the large playscape when he started getting really excited, and I noticed he was staring at a particular kid. He was giving this kid full eye contact, and saying "Geico!' in such a way as if he was illiciting a response from the other guy, whose back was to me. I didn't hear the other boy say anything, but Case jumped up and down as if he saw the Geico Gecko walking boy and continued this back and forth a little more. I didn't think the kid had responded, which is par for the course and started speaking to another child I knew. Suddenly, I lost track of Casey, and quickly turned towards the parking lot to see him sort of chasing a car and waving, shouting "Good by Jason, Goodbye, see you tomorrow!" I shouted at him to get out of the parking lot and he commenced to sort of follow the path of the car waving and shouting still till it was out of sight. He then stopped, dropped his arms, and said quietly "See you tomorrow Jason..." Ugh, broke my heart.

After prodding him for information, I went through my memory bank and recalled being at a school swimming event where several kids came and said hi to Case, and then he asked me if a Jason S. was there. I had no idea and asked some of the kids and they said he wasn't. I thought it was interesting then that he had set his sights on one particular friend. Over the past several months, he has mentioned Jason's name in passing, saying "Jason eats wafers too at lunch!" (still not sure what sort of wafers). And of course, he will not give me any more info on Jason.

I have decided to make a point of gathering info on this elusive Jason and seeing if somehow we could buddy up with him over the summer. I think it's big haps when Case connects with someone, and more than likely Jason has no clue what this all means to Casey, or me. But it means the world!

Thursday, May 1, 2008

Magic Bullets


I'm a member of a couple message boards for parents with kids with Autism. I'm a member on a county wide board, a southeastern Michigan board, and a board visited by people worldwide that focuses on biomedical information concerning Autism.

I peruse this board daily, along with the others, looking for post topics that tickle my fancy. Often times, those topics are so complicated, I don't even begin to delve into the mysteries of the post itself! For instance, here's one" kinase P13 in: Autism can be treated - by Carolyn Dean, MD, ND and E". Wow, what the heck? I tried to read on, and not being the sharpest knife in the drawer, I became bored and lost, with the chemistry discussion that ensued, and confused. "Kinase P13"?

Sometimes on this very board, some topics do tickle my fancy, and almost could have been written by me! Usually these are inquiries. Case in point:


Subj: Concentration and Focus Issues
> My son has come such a far way, but his ability to focus and
> concentrate in class is a huge problem for him. He fails miserably
> with pen/paper tasks.
>
> Can anyone recommend any treatments they found useful?

Interesting. Like I said, I could have asked about the same thing easily. In fact, attention and foucus, or lack there of , is probably one of our biggest issues right now with Casey. So of course I was anxious to see what people had to offer in response.

The responses ranged from suggestions of Occupational Therapy intervention, to some prescription drug suggestions (odd on a biomed board). But one really jumped out at me, short, simple, and extremely weird....

Re: Concentration and Focus Issues
>Adrenal Cortex Extract!!

>Julie

Well, thanks Julie! That is really informative! That's certainly not like writing "Tylenol" if someone might ask what is good for a headache! Adrenal Cortex Extract?! What the hell? I guess Julie thought that perhaps everyone who really needed to know about this ADE as I like to call it would simply get their google on! And so I did. I googled it, and of course scores of websites came up about ADE. Wow, sounds like another "Magic Bullet". Oh, how I wished I had 3 hours to sit and read everything I could. Not! After reading the first webpage devoted to this ADE, I got weirded out:

>
Adrenal extracts are derived from the adrenal glands of bovine (beef) sources. Commercially available adrenal extracts are made using the whole gland (whole or total adrenal extracts) or just the cortex or outer portion of the gland (adrenal cortex extracts). The adrenal glands are a pair of small glands that lie just above the kidneys.
<

Bovine? Ick...It didn't tell me much and further investigation forced me to go back to my search bar and add "and Autism" to my ADE query. Pretty much everything that had popped up previously did again. All the sites mentioned ADE helped with such conditions as Hypoglycemia, inflammation, drug and alcohol withdrawal, stress management, trauma, allergies and Addison's Disease. Ok, but how does it help with focus and attention in children with Autism JULIE?

So, being the investigative reporter that I am, I decided to go to the source of the statement and see how she, Juile, the orginal poster of this cryptic message, could enlighten me more than any of the websites.

I emailed her a short and polite request for info on her experience and recieved this:

>Bonnie,

I have been reading up on adrenal function lately. I think this is a
major key to the puzzle.

When the body is under stress, oxidative from the inside or pressures
from the outside world, the adrenals work come into play. They excrete
cortisol to cope with this stress. They stimulate the sympathetic
nerves
to jump into action, otherwise known as the 'fright or flight'
response.
Outward indications are sweating, dilated pupils, lots of energy
(running around) and decreased digestion. This is just temporary but if

stress becomes chronic, then the body constantly pumps out cortisol
and
the adrenals over time start to exhaust themselves. Less cortisol is
pumped out....symptoms of low cortisol/ fatigue are inability to combat

inflammation, constipation, sleep problems and I have a feeling that
these strange sensory sensations (eg strange reaction to hair brushing
as if it hurts) the children have are also due to low cortisol....


.....For the best explanation of adrenal issues, go to
www.adrenalfatigue.org

We have been supporting the adrenals here with adrenal cortex extract
and niacin and have been seeing excellent progress...more mental energy

and altogether more with it. Vitamin C given several times daily seems
toplay an mportant role.

After 6 years of being on these lists, I am beginning to think that
whatever triggered the autism/ASD, created such a shock and in turned
overchallenged the adrenals. I think if you can get the adrenal glands
back into action, then half the battle is won.

Sorry, in haste as I have a deadline tomorrow.


Julie :-))<

Well, ok. So, you've been poppin' some stuff into your kid pulled out of bovine adrenal glands because you "think" adrenal function may be a major key to the puzzle. You're basing this on your readings and have decided this would be a good idea.
I'm sorry, did I miss in this email about her doctor or DAN practioner supporting this? Don't apologize for your hasty response Julie, I got all I needed from your email (and the happy face by your signature helps too!).

Sorry if I sound cynical. I am really glad her kid is benefiting from Adrenal Cortex Extract, I am.

But, I have found that I have benefited from years of experience. I have seen this sort of response on boards over and over, a parent offering up the Magic Bullet that helped their kid! I have to confess, had I read this about 4 years ago, I probably would have already ordered some of this ADE from one of the many supplement websites on the internet. I would have waited in anticipation for it to arrive, gotten it, waited a few days because my conscience would be asking me "Do you really want to give this to him?", and then I would, and there wouldn't be a change....nothing. I did this so many times, wasted so much money, so much money, and hope.

I guess I decided to write about this whole message board exprience not to pout about my own mistakes, but to let anyone who might read this who is new to the whole Autism thing know that you should be leery, oh so leery of Magic Bullets. And boy are there a lot of them. I probably still have 12 half empty bottles of them in my cabinet. It's bad enough when companies sorta play on the innocence and naitivite of parents who are looking to help their child. But I think it's even worse when a parent throws out something so irresponsibly like Julie did. You don't just post one term and not offer up any info. So, people read Julie's post, they have a 3 year old whose in preschool and they get daily reports that their kid can't focus, and they order this stuff without research. I'm telling you, it can happen. And then their kid has some sort of bad reaction because they gave too much or too little and no one was policing this from a medical stand point.

We fortunately didn't have any really bad reactions to the "Magic Bullets" we tried. Oh, there was the "I hear Teletubbies" Debacle of 2002 when tried DMG, but that's another story. I just hope no one else does either.

BEWARE THE JULIES AND ADRENAL CORTEX EXTRACTS OF THE WORLD!!!!!! There is no Magic Bullet, and if there is, please tell me more about it than it's name!