Friday, October 31, 2008
Wednesday, October 29, 2008
Give me a biomed plan that I can afford to do. That is a "starter" thing, of sorts. I've got some ideas- eliminate the red dye/msg... What else? Let's keep it under $50 a month. No fancy vitamins, he takes a multivitamin, and it's hell to get nasty tasting crud into him.
Give me a food plan. He eats the following:
- Breaded chicken nuggets
- Baby food peas
- Fruit snacks
So yes, I'm swallowing my pride here and asking for info.
Tuesday, October 28, 2008
I am so tired. I shouldn't be. It's weird. I could hardly stay awake coming home from Jaymes' OT session. So I'm sitting here on the toilet (just sitting, nothing gross!) with my laptop watching the kids take a bath. Before that I was sitting on the couch watching them pour pretzels everywhere. Jason will be furious at me if it's not perfect when he gets home but I don't even care anymore.
Jaymes did good at OT. The Speech therapist told me that when she went to observe him (she's a saint for doing that) that he was also awesome. I am so proud of my lil buddy.
Now if only he were like that at home. I admit that it's gotta be my fault. Obviously, if he's good pretty much everywhere else, it's me. I just don't know what I'm doing wrong. I wish someone would tell me, so I could fix it.
I'm back to this whole non sleeping thing. I lay there all night and watch the clock. It pisses me off. all the little noises all night make me angry and by morning I want to kill someone.
But all in all, it's been worse. I can't complain too much. I'm blessed in too many ways to hate life entirely right now:
- Great kids
- Awesome therapists for The Boy
- Sierra has this cute dimple right above her butt that makes me laugh (they're in the tub, I can't help but see it!)
- My dogs are happily munching pretzels off the floor
- My best friend forgave me for my stupidity
- It's almost bedtime and I'm going to take some Seroquel (literally a little chip scraped off one of my ancient Seroquel's puts me out all night)
- Jason's not home... So it's peaceful.
|By||David C. Brayton "kestrel2000" (Santa Rosa, CA United States) - See all my reviews|
That's right...because there is an angry mob on her side, the consensus of scientists that attended real schools and obtained real master and doctorate degrees in things like epidemiology and medicine, is wrong.
Dr. Offit faces a very challenging opponent and he did it with an exceptionally calm and rationale analysis of vaccines, why they are safe and more importantly, why the quacks and anti-vaxxers are wrong. And he did it in a style that is very readable by the lay person.
When Dr. Offit starts laying out damning facts against the anti-vaxxers, you will be left agape. For example, Dr. Wakefield took $800,000 from a plaintiff's attorney and used it to fund his studies and never disclosed where the funding came from, he never obtained informed consent and when he ran his studies past IRBs, they were anything but medically qualified. Just astounding. Of course, the results of his studies have never been duplicated and any physiological basis for his hypothesis has been debunked.
Yet, there are people who flock to Dr. Wakefield and give him lots of money for unproven and dubious-at-best treatments and cures. Very, very sad.
Dr. Offit also discusses how science is perceived in society. A lot of people simply don't "believe in" science and how science is done. Dr. Offit analyzes this later in the book and it is hardly comforting. (An excellent book about this phenomenon is Carl Sagan's Science as a Candle in the Dark.)
Probably the scariest part of the book is when groups like Generation Rescue hire public relations firms. Whilst I'm all for spirited debate, these groups will misrepresent any fact, omit crucial details and pander with the most vile and loathsome tactics.
Definitely a highly recommended book. Scary and depressing because science and vaccines have taken such a bad rap. But hopeful because there are folks out there like Dr. Offit, Orac and others that are willing to stand up for rational, evidence-based medicine.
While I feel for Jenny McCarthy and her struggles with autism, her incessant denial of huge amounts of science and evidence is causing thousands of parents to forego vaccinating their children. She is endangering our children and some will die from childhood disease that were once almost completely eradicated.
On the flip side, here is another view of the same book:
There has NEVER been a definitive study of the autism rate among unvaccinated populations in the U.S.
Most Amish people do not vaccinate their children. Doctors who service these families have indicated that autism virtually never occurs among them.
Dr. Mayer Eisenstein of Chicago runs a number of pediatric offices the majority of whose patients are not given vaccinations. He says, "We have a fairly large practice [4 separate offices employing 5 doctors]. We have about 30,000 or 35,000 children that we've taken care of over the years, and I don't think we have a single case of autism in children delivered by us who never received vaccines." He goes on to say: "We do have enough of a sample. The numbers are too large to not see it. . . . It's not something that anyone would miss." Dr. Eisenstein is the author of the book "Don't Vaccinate Until You Educate," which I highly recommend.
It is therefore not surprising that former National Institutes of Health Director Dr. Bernadine Healy has called for more research into a possible vaccine link to autism and said the question had not been settled.
In 2006, a bill requiring the federal government to conduct a study of autism rates in unvaccinated American children was introduced by Reps. Carolyn Maloney (D-N.Y.) and Tom Osborne (R-Neb.). When Rep. Osborne did not return to Congress the following year, Rep. Maloney introduced similar new legislation (H.R. 2832) and got Ron Paul (R-TX) and Maurice Hinchey (D-NY) to sign on as co-sponsors. 18 other representatives subsequently signed on (11 Democrats and 7 Republicans). However, the legislation has remained bottled up in committee for over a year in the face of intense, yet unpublicized opposition. One can only wonder where that opposition is coming from.
Monday, October 27, 2008
I got him this make your own candy necklace kit for Valentines Day, but we forgot to do it. Jaymes found it, so I decided to let him have at it. The candy pieces were pretty small, and it was very hard for him to string the pieces. Took a lot of dexterity. And a lot of patience. He actually sat there for an HOUR, stringing candy pieces. Quietly. Peacefully. No screams, even when he dropped candy pieces. He didn't even really eat that many pieces while stringing, he was set on making his necklace.
He looked like he was concentrating SO hard!
Look at his awesome necklace!
See how many he put on there, all by himself?!
Sadly, at the end, he dropped his necklace and it went everywhere. Then he ate all the pieces. But isn't that just amazing? He sat, stayed on task for an HOUR. He managed to string those little pieces with a piece of stretchy rope... I'm really just floored by it.
Later he had a huge fit at bedtime, which was unpleasant.. He beat his face up pretty good against the wall. However, he talked, used the longest sentence I have heard out of him. He screamed at me "WANTA WATCH ELMO!"
What a day for language and attention span. Jaymes is awesome.
I cleaned the kitchen and put up the new drapes...
And my little tack room I recently made...
Sunday, October 26, 2008
I love that I can get advice, feedback, and support by blogging. That's probably the biggest "pro" of blogging. That and the whole networking thing. I have met a lot of awesome people, both online and in "real life" via my blog.
The downsides of having a public blog... When starting a blog, you go in with one of the following mindsets:
- Make blog private and speak your mind
- Make blog public and censor everything you say
- Make blog public and risk upsetting people you blog about
I blog about people I know, and my relatives. I blog about other bloggers. I rarely use real names (especially friends' kids names) or post pics of them though.
I say what I think, and I write while angry. I rant and rave sometimes, and say things that I don't see as offensive or hurtful, but others do. I guess it's the risk you take... But you know, myblog is my safe place where I can voice my feelings and frustrations. I can't see censoring everything.
I have a friend who means a lot to me. A long time ago, I blogged about a situation we had between our children that had made me very uncomfortable and sad. I didn't say anything to her, just let off some steam in the blog then a few hours later deleted the post, realizing how angry I had sounded. It was mentioned again in a later post, but I didn't see anything offensive there and left that up. Most of the post was about how great it was to see my friend and her family again and how much fun we were having.
I guess I didn't think about the result of my friend reading that post, and how she would feel. She doesn't know me well enough to know that my way of getting "rid" of something that is bothering me is to write it down, or that my post was never meant to be read by her, or to hurt her. I love her, her son, and everyone else in their family.
Her son is special needs too, a different type than Jaymes. He is not entirely in control of his behavior. I know this. I love the kid in spite of the bad times (I used to watch him, and we had some moments!) same way I love Jaymes even when I want to strangle him. Normally, I'd have just let it roll off like I always did... But it was at a time in our lives that so many people, kids and adults, had snubbed Jaymes or put him down and I was feeling that protective "mama bear" emotion. The situation cut me deeply, and I couldn't stop thinking about it and being sad about it until I had written it down and gotten it out of my system.
I know my friend's son didn't mean anything by anything he said, and he didn't understand the hurtfulness. He experienced the same thing from his own peers, which I got to witness at Target (and wanted to throttle the little bastards who were calling him names and teasing him). I don't know why it got to me so much, but it did.
And so, as i always do, I blogged. I shouldn't have, I guess. I should have kept it to myself, but i suppose it didn't occur to me my friend would read it (those things never do occur to me, though they should!) and be hurt. She handled it the same way I did- by not saying anything, and I didn't know until today that it had been an issue. I've been so busy with my own insanity lately that I haven't had time to think about friends.
I hate to think that my venting ruined a relationship I value over most others... I can't blame my friend for being upset, and if she feels my mistake was truly unforgivable, I can't blame her for wanting to end the friendship. I hope we can work it out, who knows... Either way, she and her family will always be dear to me, and the only thing I miss about the state of Florida.
So yeah. I fucked up badly. I feel terrible about it. I hope I didn't ruin a friendship that meant so much to me.
I'll always remain true to myself though, in blogging. The day I start censoring my posts to exclude anything that could potentially hurt someone is the day my blogging will fail to give me that relaxation and therapy I so badly need.
I think that in the future, I do need to use some more restraint though, and not publish posts until I'm done being upset. That way I can read back through them and decide if the post really needs publishing or if the act of writing it helped me enough. Moments of anger are not something I want to look back on.
Anyway, got some updates up on Don't Bite The Dog: Beyond The Blog. Added a bunch of biomed/DAN!/Anti-Vaccine links, plus the CDC's page on vaccines and a few more blogs I like.
I need information! Please use the contact form on the site to send me the following:
-Autism friendly pediatricians (if no website, phone number is fine)
By autism friendly, I mean that the doc is willing to discuss staggering vaccines, GFCF diet, and some biomed stuff. I do NOT mean doctors who are DAN!, as there is already an online list available. Autism friendly does not necessarily mean these docs will agree that vaccs are death- but they will be willing to discuss it without being asses. Make sense? I hope I'm somewhate coherent, it IS morning after all.
-Links to informative sites
Autism related, GFCF diet help, Biomed info, chelation info, DAN!, ABA, treatments I haven't thought of... Anything that you think would help families understand their various options.
-Links to agencies
Autism advocacy, support programs, etc.
-Links to Autism Forums
I have Foggy Rock and Autism Acceptance Project- are there any more?
-Anything else you would think helpful to parents of newly diagnosed kids.
Remember, you were once one of those "newbie" parents! The best information comes from other moms and dads, so please share your knowledge.
If you've got ideas for features to add to the site, please let me know.
I cannot stress enough, that while this blog expresses my opinions regarding all things autism (and in life in general!), the site does not. It does not reccommend one thing over another, nor does it choose sides in the Great Vaccine Debate.
Thursday, October 23, 2008
I don't think that bio-med approaches and supporting neuro-diversity should be mutually exclusive.
I think that as a parent you got to follow your guts, and stick with whatever make your child gain skills and progress. I also think that what works for one kid may not work for another and no one-way approach should be advocated. I also think we should be supportive and accepting of one another as a community. I do shudder in front of the US magazine hinting about a cure for autism, because it is not true. Not every child with autism can be recovered, for once we don't even know what are the causes of this condition, let alone a cure. Bio med works for some but not everybody.
Now that Ms. McCarthy has announced through a huge media splash that autism is curable, where does leave the cause of Autism? Where does it leave that mom with the quirky kid at the park, the one that inadvertantly pushes other kids off the play structure, and spends most his time stimming on running water? If in the eye of the general public, autism is now curable, why little Jimmy is yet to be "fixed"? If the reactions expressed on this thread give us a clue we may have a new "freak": little Jimmy's mom, who will be now judged either too lazy, or in denial, or having a "guilt projection". (to mention a few of the comments). Great, now the already stressed, overly tired, overwhelmed and already somewhat ostracized moms of the tantrum-prone, hitting, bolting and head banging children cannot even feel supported within their own community.
When public figures, such as Jenny McCarthy, take on causes as urgent and important as Autism, they owe to its community to educate the public, and be a model of tolerance by using moderation, and restraint toward the Amanda Peets and Dennis Leary of the world. I feel that Ms. McCarthy has lost valuable opportunities to bring to the national attention crucial issues such as the importance of funding research, and bringing to the attention of the general public how every child in the school system would benefit from congress fully funding IDEA, or pressing to pass law to make insurances to pay for ABA interventions.Posted by: LCD on Age of Autism
I think that was beautifully said. There is so much tension between "sides" here in our little online Autism community... One side laughing at the other side or expressing their disgust that the other side is vaccinating their children, not doing DAN! or chelation..etc... And the other side is angry that those children who are not vaccinated, are not vaccinated. They worry that those unvaccinated children will cause an epidemic of some long gone diseases due to the lack of vaccination. They criticise the biomed parents for often not doing proven therapies (OT, Speech, ABA) and only doing the invasive things like chelation and jamming pills and powders and supplements down their kids throats. If you don't think there are sides, you need only to email me and I'll link you to dozens of examples. Sure, there are a lot of parents who do a both- DAN! and therapy. There are parents who do neither. But the majority of us belong to one of the aforementioned two sides.
I am just as guilty and anyone else of taking "sides" and bashing on the one I'm not on. I won't pretend I'm unbiased and balanced in my opinions (my website is/will be, to the best of my ability). But I find that listening to the Kim Staglianos of the world (read her comments on AOA, they're usually very well written and not nasty) gives me a much less disturbing image of "that side" than does reading John Bests bizarre blog, or reading the comments about parents killing their children with those evil vaccines. Likewise, I will be editing my comments in previous posts to be less disrespectful to those of the AOA crowd who are intelligent, educated, and just trying to do their best to help their kids.
We need to work past this rift between sides. it's not easy, the vaccine debate is a huge deal. It gets nasty very, very easily, but it is a topic that needs to be discussed. If we could just find a way to sort out of differences, bite our tongues, and get along, I think we could learn from one another. And that could only benefit our kids.
For my part, I will be more civil in the future. I will not call the Anti-Vaccine folks nuts/crazy/whacko.It's disrespectful, and I apologize for my use of those terms in the past. I will, however, stick to my beliefs, and say what I think. I won't censor my blog to please others, but I will take that first step in bridging the gap between the two sides. Decency isn't unreasonable, and I think I can manage it- how about you?
To end on a super positive note, look! Jaymes can draw a circle and a line when asked now. How terrific is that?!
Wednesday, October 22, 2008
Jaymes is lying on the couch watching it, and singing the Itsy Bitsy Spider song. Ok, not the words, but he's trying to follow along in babbles with the melody. True, he's butchering it, but how cute is that? He knows certain parts of it now, and when Elmo counts, Jaymes counts too. When they sing their songs, Jaymes goes silent and is just entranced.
If I accidentally shut off the TV, there is rioting. As soon as it's back, all is calm.
Sierra sings and talks and dances with it too, more so than Jaymes, and the pair of them singing is just too awesome for words.
Jaymes' talking is really improving. He told me today, very clearly, "I want cupcake." He tells Sierra what she can and cannot do, in true big brother style. He sings out "hiiii!" to anyone who knocks at the door. He's just a cool kid.
McJenny, you are not my voice. You do NOT speak for me. You do a great disservice to the Autism community in general. I'm thrilled for you that your little one was "cured" but I'd rather focus on treating my own child than obsessing about why he is Autistic, and desperately trying to force some semblance of a "cure" on him. Honestly, it's wonderful if her child was "cured." But (and I may be wrong) my thought is that for the most part, the kids who get "cured" are the ones who were so high functioning in the first place that it didn't take a hell of a lot to get them where they needed to be. Kids like Jaymes, or Leelo seem much less likely to be "cured" in the same manner as McJenny's kid.
I worry about the many parents who will hear McJenny blathering on about her recovered child (recovered from what? Addiction? An infection? Autism isn't an illness, it is a difference in the wiring of the brain) and decide without bothering to educate themselves, to not vaccinate, to use their children as lab rats for invasive treatments with zero scientific proof (chelation comes to mind) all because some pretty celebrity told them to do it. Or the parents who are filled with false hope of one day having an entirely "normal" child, and later down the line realize that it just isn't happening. The letdown is harsh- I started out as one of those myself.
If you have the money for all the vitamin/supplement/dietary stuff, go for it. You're unlikely to damage your child that way, and some (though not the majority) do improve as a result. Jaymes did not, and I have to wonder if some of the parents who are 100% gung-ho about the DAN! stuff are imagining improvement where there isn't really much. Doctors endorse things that -work-. I was talked into trying GFCF by our pediatrician back in Florida, because he thought it might help. He did not, however, suggest that vitamins and special foods would be some magical cure.
The people I had pushing the alternative stuff on me- chelation, vitamins, supplements- were people who would profit from it. The nutritionist who had hundreds of dollars worth of vitamins for sale, the crazy chirpractor with her very own chelation set up. None of this was payable by insurance- no, these were hefty prices that went right into these people's pockets. They were promising a cure, which should have tipped me off immediately. Of course they'll go on and on about the wonderful benefits- it's their job, their income. They don't give a rats ass about your child. People like this prey upon the desperate and the uneducated for the almighty dollar. Maybe someone has met one who will do free chelation for the poor?
I keep hearing this argument that doctors are in it for the money, and the herbalists and chelation folks are trying to save our kids... But Jaymes' doc makes very little from Medicaid, and spends tons of time with him anyway. The herbalists get every cent of their exorbitant fees. Seems like they're making more off their wares than the docs are off vaccinating Medicaid kids.
I will always swear by the things that I've seen proven- Speech and Occupational therapy, a structured routine, and medication as needed. Alternative therapies that have a proven success rate- music therapy, hippotherapy, pool time. ABA, though we have not experienced it ourselves due to lack of funding.
The day I see real, scientific proof that vaccines cause Autism, that chelation cures Autism, that therapeutic foot baths cleanse the brain... I'll admit that I was wrong, and I will explore some of those things. Not until I see proof. Not some outdated study that's been proven bullshit, not some desperate parents trying to find someone to blame, who could afford a good enough lawyer to win a lawsuit that all sides knew was just a ploy to make money and publicity for the anti-vaccine movement.
I'm all for the whole Green our Vaccines thing. Safer vaccines are nothing to complain about. By all means, everything should be constantly working towards being safer. I'm all for staggering the vaccine schedule, rather than doing a ton at once. I'm also for responsible parenting, and I will always vaccinate.
Once again, McJenny, you speak for no one but yourself. Enjoy your child, take pride in your accomplishment. Jaymes isn't broken, he doesn't need to be fixed. He needs help to learn, function, and be a happy member of society, but he is NOT broken or deficient in any way. I work towards helping him, not "fixing" him.
To those parents who have found McJenny a source of inspiration and hope, and who are doing their best to help their child while remaining educated and informed about the various treatments, good for you!
I often find her to be excessively nasty though, and she comes off as bitter or hateful at times. She's been known to go into completely bizarre ranting sessions that are bordering on shocking.
Then there are the ones that are not only amusing, but right on base
A little nasty at first, but not entirely off base. at the end she goes into that territory of hateful and insulting. People do not learn anything from that sort of "help" except that they probably should not call Dr. Laura again.
Right on target, and very educational. This one applies well to me.
I have no clue what to think of this one, it was kind of interesting but who knows what is true and what is not. The photo -does- look a lot like Dr. L's son.
Not sure what I think of this one either. It comes off as Dr. Laura telling us women to get our rears back into the kitchen... Maybe she's very old fashioned, who knows. It left a bad taste in my mouth though.
The end of this one is HILARIOUS, I love the Dr. Laura doll.
Some random person on Youtube's perspective... Also interesting
Some good stuff, some bull
I do not like many of her comments regarding teen and out of wedlock pregnancy, or that she feels that if a woman does get pregnant, she should -have- to marry him, so they will not have the child out of wedlock. I don't agree that all teen moms should put their babies up for adoption- lord knows I did not, and it worked out just fine.
I love her stance on stay at home moms. I agree with her that staying at home is the ideal thing. I do not, however, think she really considers that staying home is not always possible in every situation. It's more of a "stay home or you're a bad mother" vibe I get from listening. Staying at home can be good or bad, depending on the person and on their child. It's not a one size fits all sort of thing.
I recall one thing she said, about how sad it made her to see daycare/school kids walking down the sidwalk holding onto one of those toddler leash things with the handles all down the line. That made me laugh, I hate those things too. Kids on leashes kind of freak me out. Ironically, Jaymes' teacher used one on the field trip to the fair and only Jaymes used it. He's so silly.
Anyway... I think that in some cases, Dr. Laura's style is very effective. In some cases, she'sjust plain bitchy and cruel. Either way, her show is very entertaining.
Peta is so insane, it's funny. But this is cute... In a twisted sort of way. Click here. Peta has decided we are no longer to call fish, fish... They are henceforth known as Sea Kittens.
Their Sea Kitten Bedtime stories, probably intended for kids, are as uaul creepy and graphic. Basically it's stories of a bunch of fish... One lives in a fish farm and is suicidal, "she looks forward to the end". One is a genius fish who is shown on the next page cut open, with a blurb on how he was fed to a smart kid who after eating one too many mercury filled Sea Kitten, falls to the bottom of his class. Another Sea Kitten has gone mad with grief after watching her loved ones get 'hooked' and spends her time plotting revenge against cats, for whatever reason...
Peta, once again you manage to make something so bizarre, I'm lost for words.
Oh, except this... I love me some blackened catfish. Nom nom nom.
Tuesday, October 21, 2008
I've learned something from all this though... That the only people I am capable of loving are my kids. Everyone else... I'm fond of people, I'm attached to people.. But I -love- my kids. Maybe I was supposed to stay alone, and that's why god or the devil or elmo or the rabbit in the moon has decided to make my marriage so miserable. Ok, or maybe that was my own doing. Who knows.
I still feel kind of sick, that whole miscarriage thing was not pleasant... Thought it was all done with but ended up sprawled out on the couch this morning with cramps so bad they made me twitch. But that's it, haven't felt bad since, so I can't complain.
I'm having trouble dealing with that though. Jason is glad our baby died, because he didn't want another one. I know my family would just say "you didn't need another baby anyway, it's no big deal."
If the baby had lived, it would have been named Justin or Kayley (goodness, I do love my names with 'Y' in them, don't I?) and somehow I would have made it work. I always make it work. Maybe if that had happened everything would have gotten better.
Probably worse. Babies never bring people together.
Ok, I'm sorry for being morbid. I'll move on to less depressing topics.
My new website. I loves it! Lovelovelove! I've put a lot into it, but it is nowhere near what I want it to be. Eventually it'll have a listing of "autism friendly"pediatricians from all over the USA, it'll have a video library of autism related stuff (video of a meltdown, of head banging, of rocking, of other stimming..etc...), articles from both sides of the Vaccine debate, tons of links to different resources... It's going to be wonderful. I just need to upgrade my account to a better plan, so I can add as many pages as I'd like.
I am trying to make the site the ultimate resource for parents of kids with autism... It's small now, but it'll grow. Just like the blog has.
If you would like to support the project and help me get some better hosting, you can paypal donations to email@example.com. I will send a reciept to reflect what donations are spent on. My ads should help with site upkeep, somewhat, assuming the continue being clicked on... the ones here, on the site itself, and on Sierra's site... I'm sure they will though ( :
I don't know if things are going to get better or worse in the near future.. I have that sick feeling in the pit of my stomach that something really bad is going to happen, and I feel the need to remain pessimistic so that when it does, the blow won't be as brutal.
So I'll keep throwing myself into the creation of this website, this mega resource, and try and relax.
Oh, and something to note about me: If my house is spotless, I'm not happy. My house is currently sparkling, and yet all afternoon I went around the kitchen madly scrubbing at things with my Mr.Clean Magic Eraser like a rabbit on cocaine.
God help us all.
Any content you would like to see? I was thinking I'd try and coerce some of my fellow bloggers to write an article about their stance on Vaccines/treatements, and add that to the resources type stuff...
But yeah, any comments/crits/ ideas, let me know.
Don't Bite The Dog Website
Monday, October 20, 2008
Now i feel like a moron. I do prefer the cold to the hot, but getting Jaymes out of bed for school at 6:30am in the cold SUCKS. Our house was at 55 degrees this morning because we're too cheap to turn the heat on. the kids were good, in their heavy sleepers and blankies and I was good until forced to slither from my cocoon of warm blanket when my alarm rudely jolted me awake.
Jaymes had the same reaction as me, when I tried to pull his blankets off and wake him. He curled into a tight little ball of boy, and growled at me. Yes, growled. I pried his feet out and stole his diaper and jammies, and he curled right back up. His legs are kind of like those retractable dog leashes- you pull one out to do something, and when you let go it zips back into place.
I did finally get him dressed despite his balling up and growling. He did not bite, thankfully. That's Sierra's job, biting. We shivered out way out to the car, and put on the heat and headed down to the bus stop, but of course the heater blew cold air until I had finished getting the boy on the bus and was back in my driveway.
I bolted back inside and retreated to my warm cocoon, where I remain seated right now.
Need to crack out the fleece jackets.
Sunday, October 19, 2008
I was pregnant- Didn't know it. But I guess maybe all the stress of the last couple weeks got to me. I ended up having a miscarriage, which is why I've been a grumpy bitch all week. I've been in a lot of pain and doped up on Ibuprofen (Loooove those Walmart brand softgel things) and haven't felt like dealing with anything or anyone. I finally went to the urgent care place, and they pretty much said it's not a huge deal. It was a VERY early pregnancy, and the miscarriage should just finish up and go away on it's own without any nasty treatment. I'm already pretty much back to normal, which is good... No more popping softgels.
I guess it's for the best... This would have been a terrible time for another baby. Jaymes and Sierra both need me, and they would have both had more issues arise if I had had this baby.
But on the other hand, it's hard for me. I love being a mother, I love my kids. I do want one more some day, and I can't help but wonder... Was it a boy or a girl? Would it have been like Jaymes, or like Sierra? What color hair would it have had, what color eyes?
I know, it's stupid, it wasn't anything that even remotely resembled a baby at such an early point... But still.
Saturday, October 18, 2008
Apparently Jaymes is an angel in therapy as well (the sessions I don't get to come in for). I haven't been kicked out of Speech yet, thankfully, so at least I have a clue what's going on in there... He did really well at the last one. When he got sick of the book being read to him, instead of screaming he just make these hilariously bored faces, closed his eyes, and stuck his fingers in his ears. I know it's not what we want him to do, but I was very impressed that he did something to show his boredom other than screaming. That is an excellent step. There was a little crying later in the session, as he wanted the train and she would not give it to him until the end, but all in all it was a very positive, pleasant experience for all involved. His speech therapist is really amazing, she's made so much progress with him. He's never clicked with a ST the way he did with Shawna. As for the other two therapy sessions... I got kicked out (Yes, it annoys me greatly, but I can't do anything about it) of both OT and PT so he goes in alone. They say he is doing well, and for the most part I'm sure he is. Sometimes I can -hear- the screaming, so I know it's not 100% but no complaints here.
I hatehatehatehatehate that I can't come in for PT and OT. It annoys me to no end. I hate not knowing what he's doing, not knowing all the little things. They're not going to think to tell me about how Jaymes played with the green goo and named a letter he didn't know before, or that he said something I didn't know he could say... I'm missing out on all the little subtle things that he does during therapy that only I can really appreciate. A 30 second speech on what they did, at the end of the session, doesn't tell me a damn thing in comparison to having actually watched it.
I'm not going to say anything though... They are the professionals, and I'm sure they have valid reasons for not wanting me there. I'm sure he does work better without me... But therin lies my big problem. I don't CARE if he works well without me in the room. That doesn't do me any good here at home, where the problems are. He needs to learn to behave and work with me in his presence, because I will always be there. If he can't do a thing but yell and scream with me in the room, our lives can only get worse from here on out. We need to focus on getting Jaymes to be able to handle me being around, but still working and not snuggling mommy.
What am I doing wrong? At home he is angry, screaming, violent. His face is forever twisted into that unhappy face. He won't do anything I ask him to... I don't know what I'm doing wrong. Just my presence in a room is enough to make him start being difficult.That applies to therapy too, to some extent. I don't let him have his way most of the time, i lay down the law. We have rules, he knows what he can and cannot do... But he doesn't care. All day long is crying and screaming and throwing himself down.
When we're out, it's worse. He used to be SO good out. Now he won't hold hands EVER (will fall on the ground to avoid holding hands), won't sit in the cart at Walmart, won't be put into a stroller, fights desperately and loudly to avoid being buckled into his car seat... If he stays like this, in 5 years he will be a danger to himself, me, and everyone around us the way he behaves in public.
So please, someone, tell me what I'm doing wrong. Do I need to be stricter? More permissive? More sensitive to his needs? Tell him what we're doing, ahead of time? What? I want Jaymes to be like he was on that field trip at school.. A happy, beautiful, smart little guy. I want him to be able to function with me around...
Friday, October 17, 2008
Go bookmark Sierra's new hangout: Stop Squeezing The Cat: Life with a tiny shoe diva
I wondered what all that noise was.
Jaymes always knows how he wants things. From the swing at my mother's old house that he -did not- want taken down despite that fact that he never uses it, to the straps in his car seat being just so... The boy is opinionated. Good for him.
Thursday, October 16, 2008
Date and time of every time you've come to the blog
What you googled to get here
Which posts you read
How long you spent on each post
What browser and operating system you use
No point being sneaky. I don't post -anything- on this blog that I have a problem with family or friends reading. If I plan to be "mean" to someone, i'll do it in an email or to their face. This blog is here for me to vent, and not for the benefit of anyone else (with the exception of the Autism related stuff)
I also NEVER EVER EVER take posts down. Ok, once I did, a long time ago. But aside from that, NEVER. Anything (especially) pertaining to my husband would certainly not be taken down.
Wednesday, October 15, 2008
Interestingly, the ads that are between the posts are in no way relevant to the content of this blog, however the ones on the right toward the bottom of the sidebar are. Hmm.
I know very little about ND except that I cannot login to their site by using the link on Squid's page. LOL.
From what I have read, it looks like ND is opposing research for a cure for Autism? Or is this incorrect? I -did- read it from a blog that doesn't like the ND people...
Anyone care to explain it to me?
Tuesday, October 14, 2008
Then, I waited for more than an hour to get picked up.
As for the rest of it... I don't want to talk about it, I just want to pretend none of this is going on. I'm being pressured and threatened by all sides, even by my own family. I just want everyone to disappear and leave me alone. I would be happy if everyone in my home life except the kids just went away. I don't want to deal with family. I don't want to deal with anything.
Monday, October 13, 2008
I don't know.
They are thinking they'll let us out this morning or later today, assuming her fever does not come back. I hope it doesn't, but this fits the cycle she's been having. Fever free nights, goes up in the late morning, and cycles up and down all day long. If they let her go prematurely, we may just be back in the ER. I wish they'd watch her for some of today first and make -sure- the fever stays gone.
Apparently another blog, an anti vaccine blog thinks it's hilarious that Sierra is lying miserable in a hospital bed is humorous... And you know... I don't care what your stance on autism and vaccs, or if you like my blog or me, or we disagree. Regardless of all that, if you can find humor or satisfaction of any kind in a baby being ill in a hospital bed... Well, you've got your own issues to deal with.
Sunday, October 12, 2008
The very few cars on the road are so tiny, like little matchbox cars pushed around by Jaymes and Sierra when they play. Looking out there, into the darkness of night, yet the brightness of city, is oddly soothing.
Jaymes has been sleeping for 16 hours now... I hope he is ok too. I feel bad, but I have no desire to wake him. He has not eaten since last night, and only had 4 nuggets then.
I got meal vouchers from the chaplain, but I can't eat so i saved the food for Jaymes when he wakes. He loves mac n cheese. It sticks in my throat like a lump today.
They are drawing blood cultures, gave her motrin, and are going to give her antibiotics again. she is not going home today. She drank some apple juice and ate a few bites of mac n cheese. Jaymes finally woke up, but will not eat. He has not eaten since yesterday, poor guy.
She had a good few hours with her temp down at 101.5, ate dinner and played and was herself.. then BOOM. 103.7 then 104.3. She's not at her finest right now.
Everyone is telling me I'm overreacting, that Jason only did this stuff because he was unhappy about money and that he can't help it... Blah blah blah. I'm not welcome at my moms... I'm not taking them to a shelter, Jaymes is not able to handle a situation like that.
I guess I only have one option...
Sorry for all my whiny posts. Nobody's on my side right now, except my internet friends. I love my internet friends <3
But he put a KNIFE to his THROAT in FRONT OF MY KIDS. They understood. They screamed and cried and Jaymes looked just terrified. How can I go back knowing that it could (and likely would) happen again?
Why am I alone on this? I wish I knew someone here in NC.. I wish I weren't on my own.
Saturday, October 11, 2008
Edited out the 1st thing, as a lunatic on the Fugly board is trying to make interwebz life and real life come together...
The 2nd thing was that fever Sierra has had all week got a lot worse. She was 104.2, and barely moving so I took her to the ER at Moses Cone, in Greensboro by my mom's house. 7 hours later, we transferred to Wake Forest/Baptist here in Winston. Sierra has a chest Xray that showed some sort of viral thing, had to be catheterized (sp?) and have an IV put in. The IV ended up in her artery, so they removed it. Jaymes tried to protect her during the catheter insertion by attacking the nurses and screaming "STOP IT! IT'S OK! STOP IT!"
She has a weird rash on both elbows/arms. The area is red and swollen, with tiny little bubbles all over it. It's very hot to touch. They drew a line around it to see if it grows tonight. she has a new IV, it took 2 failed attempts to get it in and much crying.
Sierra is just wretchedly miserable. You can see it in her face, how bad she feels and how scared and upset. She misses daddy too.. But how can I make her understand we can't be around Daddy right now? He's her favorite person in the world, her #1.
So here we are, me, Sierra, and Jaymes in the Peds unit at Baptist. At least there is wireless internet. I can't sleep and I haven't eaten, because no one feeds parents I guess. Jaymes had some nuggets that a nice lady at the other ER bought him...
Jaymes LOVES the Pinky Dinky Doo themesong:
And he looooooves this elmo video too. Sorry for the poor quality, it's the ONLY video of this on youtube. We have it on DVD.
Friday, October 10, 2008
My apologies for previous posts that should not have been. I'll keep it to that blog from now on.
I have long known PETA people were dumb@#$*@. Insane, dangerous, idiotic people. Scary scary people. But this is just sick. Isn't it enough to scare little kids by telling them their mommy is a murderer for cooking meat and that daddy will kill their pets because he fishes (more details here)?Or letting loose animals, only for those animals to be hit by cars or die of starvation?Blow up labs and kill the animals inside? "rescue" dogs and cats from shelters, euthanize them, and dump their bodies in dumpsters?
I'm sorry, but this is just.. @#$%#! up. There is no other way to say it. And you know, there are enough theories running back and forth amongst the Autism community. We've got the anti-vaccine wolves, the chelation folks, the DAN! people, the therapeutic foot baths, the ABA, the TEACCH...etc. Some of those have some merit, some do not. But saying that drinking milk causes Autism? Ummm, that takes the cake. I drank a lot of milk as a kid. Still love me some chocolate milk. Most of us have had tons of milk in our lives. If anything, milk intake has decreased over the years, what with all the new crap. Unhealthy drinks (yum) like soda, yoohoo, Koolaid... I don't know a lot of kids nowadays who like milk much. So, if that is the case, woulodn't Autism have been that much more prevalent years ago when EVERYONE had milk all the time? And not now, when we as Americans have gone on to new and unhealthier stuff?
PETA is sick. The fact that they have the balls to mock our children this way disgusts me and if possible, my opinion of them has lowered even more.
Edited to add: Now that my fury has cooled, I did go back and censor my obscenities. I really try hard to keep this blog PG13.
Because when Jaymes was diagnosed with Autism, I didn't know what the hell Autism was. Those of you who are not affected by Autism probably have the vague impression of some teenager rocking back and forth sucking his thumb like I did.
The internet didn't help me much. Things like "a mental disorder characterized by an inability to relate to other people and extreme withdrawal." Well hmm. Not very descriptive, is it? Most of what you'll find by Googling "What is Autism" is medical talk that really doesn't make a lot of sense, and most certainly paints a very dark picture of the disorder in general.
"Autism is a lifelong developmental disability that prevents individuals from properly understanding what they see, hear, and otherwise sense. This results in severe problems in social relationships, communication and behavior"
Initially, reading these things really scared and depressed me. I began to picture my child as mentally retarded, as stupid, as abnormal. He would never be able to love me, or play, or do anything but stare at the wall and roll around on the floor. It was devastating. My husband was in denial, and I didn't know what to think.
I didn't want to believe that this, what I had read, was our future. So I looked around on Youtube, on bulletin boards. Everywhere. I could not find anything that shows Autistic kids. I wanted to see what they were like, what a tantrum looked like, and to see if this was truly as horrible as the things I had read.
Finally I did find some videos. The kids were beautiful, bright, and different. Not in the way I had expected. They weren't freaks, they weren't somehow deficient. They were like Jaymes- smart, curious, sweet, loving, and happy. They flapped their hands or stared through their fingers at things, but they also did other things. Some spoke, some played with their friends, some swam like fishies. Some read, made art, did their own blogs!
If I had stopped researching at "What is Autism" I don't know what our lives would be like. If I had accepted that Jaymes would forever be silent and never love anything, never communicate, would we have pushed him to this point? Probably not.
Which, in my longwinded way, brings us to my point. I do this blog so that when people google "head banging toddler" or "autism meltdown", they will find my videos and see our experience. They can read my descriptions of Jaymes at his best and at his worst, and know that despite the bad, there is tons of good and inspirational and comical moments too.
Autism isn't a death sentence. It's not necessarily the end of the world. It doesn't mean your child will never speak, never love, never play. It just means you need to help them learn to do these things. I've long struggled with my problem of underestimating Jaymes. Often I assume he can't do something, or doesn't understand something, without giving him the chance. It's a horrible habit that I work on daily, and I'm sure others of you do the same thing at times. It's hard to keep the label from devouring the individual, hard to see Jaymes as the sweet almost 5 year old rather than an Autistic toddler. Someone commented in an earlier post about why I still called Jaymes a toddler. I guess in my mind, he's never really grown up like other kids (obviously) and in size he is very much like a 2 year old. Cognitively, I-think- he's reached the 2-3 year mark, which is wonderful. My calling him a toddler is probably because of his delays, which is terrible and totally unintentional. But then again, in my mind, he'll always be my little man, my little toddler buddy. Just like Sierra will forever be my baby girl.
I need to work on that. Need to reword my title banner thingy too. But I really like the word toddler. I know, I'm a dork.
But anyway... My hope is that at some point, someone as desperate as I was comes across this blog and gets the REAL picture of Autism. Not the dark, scientific death sentence that google will hand you.
Country-wise, I've got visitors from:
- United States
- United Kingdom
- Belize (much love to Chrissy, I know that's you!)
- Australia (Kelley and Taldara, the two I know amongst many)
- New Zealand
- Liechtenstein (no clue where this is!)
- District of Columbia
- North Carolina (Duh, I'm one of those freaks!)
- New York
- New Hampshire
- New Jersey
- New Mexico
What puzzles me is this: I have a few visitors from here in Kernersville, and in Port Charlotte FL where I used to live. I don't recall giving out the link to this blog to anyone in either area. So i'm curious as to whether I know these people, if they found the site randomly...etc.
How did YOU find this site? What do you think? Do I need to be goofier, or more serious? What topics would you like to see discussed? Do you get sick of the Jaymes updates, and want to here more general Autism related stuff? Do you want more Sierra stuff? Are you sick of my bitching about my marriage?
This blog is therapy for me, as writing relieves stress. It doesn't hurt to feel all loved by the thousands of folks who come here daily too -ego inflates-
Thursday, October 9, 2008
Jason is winning.
In other odd news, I noticed a really odd thing in my site tracker. Apparently someone googled "murder occupational therapist autism" and got to my blog. I don't plan on murdering any OT's myself, and i sincerely hope no one else plans to either! If you do, please spare Jaymes' OT? We rather like her.
Wednesday, October 8, 2008
It seems to me that kids like Jaymes, or like Jaymes friend K (who I -believe- has Down's Syndrome, and looks much different) would naturally be easy prey to bullies. Lord knows Jaymes is not lacking in oddities that could be teased about. His behaviors also make him a risk for abuse. Of course we love our Jaymes, and nayone who laid a hand on him would be wishing they had not once I found out, but it is something I have often worried about.
When Jaymes was 2, he was at a daycare center, as I worked full time. My work hours were varying, so they never really knew when I'd be there to get the little guy. I'd just randomly appear and get him and head home. One day I walked into the room at snack time, just in time to see Jaymes try to grab someone's cookies. To my horror, his "teacher" (whose back was turned so she could not see me there in the doorway) slapped Jaymes across the face so hard he flipped on his back, snapping "NO JAYMES! GET AWAY!"
Needless to say, she lost her job and Jaymes left daycare. How many times might this have happened? He didn't even cry, just picked himself up and ate his own cookie. The other kids in his "class" were talking, Jaymes could not. He had no language at that point, no way to tell me if someone hurt him. I look back now and wish that I had called the police, pressed charges, or something. Interestingly, she came to work at Toys R Us with me a year later, and was sweet as pie to my face, wanting to snuggle Jaymes when I brought him into the store (over my dead body, you blonde witch) and later telling my co-workers I used to be a prostitute and brought my "johns" into the daycare. Obviously they didn't believe her, and she got herself fired. Haven't seen her since, and I'm not sad either. We never did daycare again.
Even in the schools, Autistic children are easy targets. For example, this chilling story of a teacher in Florida who humiliated and insulted a 5 year old autistic boy, then had his classmates vote him out of the class. Even more horrific, this article about a teacher physically abusing his Autistic students. We are lucky, despite Jaymes' school situation not being 100% great, I trust both teachers, and know that he is safe from anything like this. How scary is it, though, to think that a teacher, who you should be able to trust completely, could get away with these things?
Out in public, our kids are subject to bullying of a different sort. Take, for example, this (previous blog entry of mine) story of a girl and her family, who were thrown out of a Smitty's Resturant because her autism was apparently disturbing another customer. You all remember Michael Savages idiotic comments about Autism as well, right? We know how it feels to get the funny looks in stores and other public places. Plenty of times I've given old ladies the death glare because they're busily making nasty comments about my son lying on the ground at the cash register, or crying, or head banging on the cart.
Autistic adults seem to get the very worst of it though. The stories I have read are shockingly violent, and honestly make me worry about Jaymes' future. I'm not going to link to these, they really disturb me...
Anyway. For the higher functioning kids, I found this worksheet to teach them how to recognize bullying, and how to respond. I hope it is of some use to some of you.
On a positive note, I have been finding that there is a lot more good in this world than bad. at the library, the librarians all know us, they know Jaymes, and they are super tolerant. We don't get dirty looks if he talks, because they know what a good job he is doing, just talking and not screaming and running around. At CiCi's pizza here in Kernersville, even if jaymes has a tantrum in the middle of the place, I don't get nasty looks or told to leave. I get wonderful people helping me pick him up and get him back to the table, and giving him balloons and talking to him. They'll even get our pizza for us and bring it to the table if he is having a really hard time. At Walmart, every now and then we get someone who sees Jaymes having a rough time of it and gets it. They smile at me, and I know that they understand, he's not being a brat, he's overwhelmed. It's that little bit of support you just need sometimes, and it makes my day every time.
There are mean little bullies. We've met some. But for every bully, there are 10 kids who want to play with Jaymes. They don't care if he talks, they just want him with them. They carry him around, give him his blanket when he drops it, or let him chase them. Just today, on Jaymes' field trip, a kid ran up to him just to say "hey Jaymes!" and wandered off. He didn't expect a reply, the smile Jaymes gave him was enough. The sweet neighbor girl who I give riding lessons will hold Jaymes hand, never fails to say "Hi Jaymes!" in an enthusiastic voice when he gets off the bus.
We could focus constantly on the bad... Label our world a horrible place because everyone is out to get our kids. Teachers abuse Autistic kids. Parents do. Other kids. other adults. Strangers. Businesses. We so easily lose sight of the many, many more people who treat our kids with love, friendship, kindess, and dignity.
The world is a place that can be both beautiful and horrible. Which, is entirely up to you.
Bear in mind, I am also the mommy who calls her 2 year old an infant. Maybe I just don't want them to grow up?
I will always think of Jaymes as my little toddler of mass destruction, and Sierra as my little baby girl. Can't help it.
Tuesday, October 7, 2008
Cleaaaaan living room, complete with sleeping canine:
Cleeeeean bathroom (I even scrubbed the floor with a friggin WASHCLOTH. Yes, I am awesome.)
Clean, shiny, sparkley kitchen. My greatest achievement for the month. I scrubbed everything. A white kitchen sucks to clean. When I'm rich, it'll all be black. Or all chromey... ooooh.
My super awesome fridge, with Jaymes art.
Sweater-Dog says "Couch looks good, mommy"
Dumb-Dog says "Ooooh, shiny swept floor. Why you not mop, mommy?"
Then I started looking at all the cute pics of Jaymes as a baby and took photos of them to share. He was soooooooooooo cute. Still is, thank you.
Back when Jason and Jaymes got along... I used to keep this on my desk at my Medical Billing job. Everyone thought it was beyond cuteness. I agree. Would it be inappropriate to cut jason's face out of it, or is that something one should wait for the divorce to do?
Jaymes and my old bunny, Thor.
As a newborn, Jaymes was a wee bit unattractive. He had a square head. Something to do with his difficult birth, and my age at the time.
A mother's day card Jaymes' daycare did in 2005
Brie was ready for her close-up:
Buddy wanted to show off for the camera...
And for our final photo... Well I'll let you revel in the adorableness.
All I wanted to do was open my can of peaches.
But seriously.. Sometimes I get too serious and I need something to bring back the lightheartedness.... and thus...
I feel the need for LOLCats, to make me feel better.
Is it a bad sign I sometimes lapse into LOLspeak?
My name is Amber and I haz an interwebz problem.
Now. Inclusion. I'm torn on it, honestly. On one hand, it's great. Jaymes gets to be around typical children his age, and learn from them. He does not pick up annoying autistic habits that he did not have, but another autistic child would teach him. He can learn new words, learn games, all that good stuff. In an inclusive classroom, there is much less emphasis on the disabilities of the children in that classroom, and everyone is treated the same. Done right, I think that most kids would thrive and grow in an inclusive classroom.
On the other hand... In an inclusive classroom, one on one attention would seem to be more limited, as it would not be deemed necessary (I would think). Games and activities and lessons would be geared toward the typical children, and would be likely to fly right over Jaymes' little head. Activities like practicing letters are rather unfair, when you consider Jaymes recently learned to do decent circles, and his ability to make lines is iffy at best. He does beautiful scribbling, and I love his art.. But it is not at the level of practicing letters on one of those dotted line letter worksheets.
Another thing to consider is this: in an inclusive classroom, Jaymes is the odd kid. We've spent enough time at the playground to know that most kids are little demons, and treat anyone different like crap. For example, the one day a little boy walked up to Jaymes (who was cuddling a pink blanket on the playground) and started talking to him. When Jaymes failed to respond appropriately, the kid called said the following: "Why can't you talk? are you retarded? you're dumb. Why do you have that gay pink blanket? You're stupid. My shirt is better than yours because it has batman." First off, who the hell teaches their 5 year old to call a pink blanket gay? Geeze. Second, can't you see this same scenario playing out in the school situation? Jaymes is the kind of kid who does get teased- and he doesn't understand the teasing, and laughs with the other kids, then looks miserable when they walk away laughing about the "retard."Oh, and third: Jaymes had on a Spiderman shirt, and it was 100 times cooler than the stupid bat man one. Yes, Jaymes is the man.
In Jaymes' old school back in Florida, we were spoiled as anything. The class was 6 kids, all autistic, though the severity varied greatly. There were 3-4 adults. one special education teacher, who was certified with TEACCH and a ton of other Autism related stuff. She -knew- Autism inside and out. The aides were certified special education something-or-others, with training from TEACCH as well. He got 1-3 hours of one on one time per day, with the teachers or an aide. The classroom was called Communication Class, and was very very communication based. Everything was spoken, signed, and written. Jaymes learned and grew soooo much during his time there, and I guess I assumed all classes would be this way. I knew exactly what Jaymes did every day, I got a note that stated -honestly- whether he had a good, bad, or so-so kind of day, what he had done, and how speech and OT had gone. I got classwork from him that I knew he did, that he was capable for, that was appropriate for his level of development. He took his naps every time, he ate his lunch. He adored his teacher, and she adored him. She had to chase other teachers out of the room, because he was the smallest child in the entire school and everyone wanted to hold him and snuggle. (Ok, totally irrelevant, but so cute, admit it- you liked the story.)
In Jaymes' case, inclusion has been a joke, and his specifically Autism classroom was wonderful. The current situation is this... The teachers are as hostile to me as I am to them (yes, neither of us should be hostile, and I try to be friendly, but damnit, I'm going to ask the questions regardless of whether the teachers want me to or not!) and seem to take any questions from me as a personal affront to their teaching ability.
His classroom has alot more kids, not enough teachers. His teacher's assistant is the same one from last year, she knows her stuff but she tends to make comments about how Jaymes only behaves poorly for us because we let him get away with it and we have made him this way... Which is not entirely true. Sure, we've made mistakes. Everyone does. But he is this way as a result of a variety of things, and placing the blame squarely on our shoulders is not only incorrect, but it's unfair. I know I'm not perfect, I do my best and what I don't know I ask and try to research. I'm not one of those moms who dumps her kid off at school and runs off to get a pedicure, while wondering what the word "neurotypical" might mean.
The classroom does a morning circle type thing, and I think throughout the day they do circle time a few times. Then they have stations (playing house, books, toys, etc) that the kids rotate between with teacher time. I have two issues with this. One being that an autistic child does not benefit from wandering from station to station (ok, maybe some do. I meant to say MY autistic child doesn't), and two being that with that many kids, the one on one time cannot be more than 5-10 mins tops. Jaymes needs one on one attention all the time, to help him focus on the activity and actually get something out of it. I may be wrong, but my best guess of what goes on every day is this:
Jaymes gets off the bus, they do their circle time. Jaymes wanders away now and then and the bring him back. He probably participates very little, as making him would result in screaming (which they clai he never does.) They do their stations, where Jaymes wanders aimlessly until he either gets one on one time for a few minutes, or he does something to draw attention (dumps a box of blocks, for example) and gets redirected in some way. They eat lunch, they take nap. Jaymes apparently does not sleep, but does sit quietly (I don't know what to think there, Jaymes is usually a dead asleep napper, or a racing around the room while everyone else naps type of person.)
They say he never fusses or has meltdowns, which leads me to believe he is just not being asked to do anything. Again, I'm not saying I'm right, nor am i saying i want to hear that he's having meltdowns. I have not been able to go ninja and watch through some cleverly disguised nanny cam (and wouldn't you doubt my sanity if I did so?) to see what goes on. But I know from home time, grandma's house time, therapy time, and life in general, that if Jaymes is made to sit and attend for longer than 5 minutes, there will be tears. There will be yells, and there will be some sort of fight. I guess I just can't find it in myself to believe he transforms entirely at school. Is that even logical? Maybe I'm the crazy one. I hope I am.
I'd love to be wrong. I want to be wrong. I'm sick of being that bitchy mother who is always paranoid and stressing the teachers out. But I only want the best for Jaymes. I wish people understood this. I'm not out to cause teachers and therapists problems, I'm out to make sure things are going right for my child. I hate being a bitch. I hate confrontation. I get queasy and panicked at IEP meetings and when I deal with Jaymes' teachers. 5 years ago, I would not be able to do what I can do now. I do it because I have to. I'm not here to be best friends with everyone who works with Jaymes, I'm here to make sure everything done will in some way benefit Jaymes.
We are so fortunate to have three incredible therapists, who despite the struggles with Jaymes, have yet to give up on him. I hope they do realize that in spite of the screaming, Jaymes does come away from every session having learned something new. His speech has improved dramatically since he started with the ST. He loves listening to music, thanks to the OT. His balance is improving, and he is doing stairs and his tricycle much better because of the PT.
I do not see that in the school situation. Since our move almost a year ago, I have seen a steady regression. I've seen tons of language lost, skills lost, behavior disintegrating. It only started to improve again once Speech and PT were started. OT started recently, so I guess that doesn't count quite yet, but it will. Maybe this classroom isn't as bad as I think. Maybe it is. Who knows. But I'll tell you one thing- Jaymes needs better, and he deserves better and I will NEVER stop trying to get the best of everything for him. Maybe the school stuff will be solved anyway- one of Jaymes therapists said she'd go out there and observe at some point... I know she will be honest, and if she says I'm wrong, then I'll accept that and apologize to anyone I've annoyed with my worries.
Life has been very hard, and very draining for all of us this last few months... but you know, it is finally looking up. Despite the tantrums and new obsessive behaviors, despite now not being allowed to hold Jaymes' hand at all without a fit... Despite it all, he is learning. Slowly maybe, but he is. With the right help, he could really flourish.