Autism and Beautiful Flowers

Speech Therapy & Medicaid Problems

2009-01-07T15:53:00.001-05:00

Jackson has had Medicaid for some time and it’s a good thing. Or at least I thought it was. Even for those who aren’t poor, Medicaid is available for those with severe needs, of which autism is one.

Now we’re finding out that Medicaid has not been paying for Jackson’s speech therapy last year. He has a wonderful speech therapist but she’s unable to come because her company won’t allow it unless we’re on “private pay” which means we pay $60 twice a week and try to get the money from Medicaid ourselves. We simply can’t afford to do that!

So as things stand right now, Jackson’s not getting speech therapy because we simply can’t afford it and Medicaid won’t pay it (and don’t get me started on our insurance companies).

Administrative message

2008-11-04T09:27:00.000-05:00

To the individual who used Blogger's features to try to find the email attached to this blog, it wasn't necessary. You only had to ask. :)

You see, knowing the email wouldn't help because it's not like I use the "secret question" method of password recovery, at least not with real answers. Further, I use strong passwords and I'm very good about changing them frequently (since my employer requires it anyway).

Have a nice day!

Special Needs Children Get a Lot More Visibility

2008-08-29T15:56:00.000-04:00

This morning, Republican presidential candidate John McCain selected Alaska Governor Sarah Palin to be his vice-presidential running-mate.

Born in Sandpoint, Idaho, on Feb. 11, 1964, Palin moved with her family at the age of three months to Wasilla, Alaska. She returned to her birth state to attend the University of Idaho, where she studied journalism and graduated in 1987 with a bachelor’s degree.

Palin is the mother of five children — Bristol, 17; Willow, 13; Piper, 7; Track, 18; and Trig, who was born in April with Down syndrome.

I'm not saying that this will necessarily solve or help anything or it won't. It's just that there is now someone new on the national stage who understands special needs kids first-hand. While Down syndrome isn't autism, any awareness of special needs issues that we as parents face is a good thing, I think.

Asperger’s Child to Perform on Talent Show

2008-07-01T15:03:00.001-04:00

This is an interesting story about this child, but I really hate that he’s being paraded on TV like a freak show.

The story calls it autism, but it's more specifically Asperger's

Georgia Aquarium Hosts Autism Fundraiser

2007-11-11T15:09:00.001-05:00

I just saw this and thought it was pretty cool. We've taken Jackson to the Marcus Institute and it's an outstanding organization. I'm delighted to see them get much needed funding.+

There was a big splash of movers and shakers at the Georgia Aquarium Saturday night.
Not only was it a star-studded event featuring a two-time Grammy winner, Michael Bolton, it was also a chance to honor champions of a great cause.
Saturday night’s event raised $1.7 million for the Marcus Institute. That money will go to help treat autistic children at the Institute.

11Alive.com - Aquarium Hosts Autism Fundraiser

Back to the Neurologist

2007-11-06T12:48:00.001-05:00

Yesterday, I left work early and drove home to take (with Julie) Jackson to his neurologist to discuss his sleep issues. As I've written, Jackson has problems sleeping at any time, much less sleeping through the night. From the doctor, we've modified his medication so we hope that will help, but that's not why I'm writing.

Yesterday was a very, very good day for Jackson. Well, the afternoon was. The morning had a very severe meltdown. But in the afternoon, he was great. No, he was beyond great.

We were able to take him into the doctor's office without having to put him in a stroller. He just held my hand on the way in and Julie's on the way out.

While in the office, he went into the toy room and started playing with a toy right next to a little girl. He didn't have any issues with her.

He interacted a little with the doctor and didn't have ANY meltdowns or get upset while we were there. He was such a good boy in so many ways.

I'll write more later, but the neatest moment was when we stopped at Moe's for some food and Julie went in and got the food while I stayed in the car with Jackson. When he saw Julie come out the door, he sat up straight and said in an excited voice, "ma ma ma". It was the first time ever.

Our hope is (as we told Dr. Schub) is that he's a happy boy. Yesterday afternoon he was very happy and very good to be with, even for those who didn't know him.

Sleep! My kingdom for some sleep!

2007-10-30T09:26:00.001-04:00

For about the past week or two, Jackson has had a very difficult time sleeping through the night. We've tried various doses of his medication (with doctor permission of course) but he simply won't sleep through the night. I'm not saying that it's a matter of choice with him, because it's not. But for whatever reason, he wakes up several times a night comes back to our bedroom and cries, rather sobs. If Julie goes back with him, he'll lay down and go back to sleep in about 15 minutes. Last night he did this 4 times. One time, Julie got him to crawl into bed with us, but he simply wouldn't settle down no matter what. She had to get up with him and take him back to bed.

We've tried everything we can think of at this point. We've tried TV noise, silence, music, people talking (church recordings) and everything we can come up with to relax him.

We know he can't help it, but something has to be done, but I wish I knew what. This affects everyone else in the family because he wakes up the kids so their sleep is broken up and Julie is getting less than 4 hours of sleep a night (often less) and I'm only getting 5 or 6. She then has to take care of Mary Rose (who is 8 months) and Jackson all day and nothing can get done in the house while he's awake because he can't be left alone for even a moment.

It's just so exhausting.

The stacking continues

2007-10-18T15:18:00.001-04:00

Jackson has become a stacking pro. If it has multiple pieces, he will stack them. Just yesterday he was stacking cotton swabs. That's right, Q-tips.

Long Overdue Update

2007-08-12T22:45:00.001-04:00

I could go on and on about everything that's happened since one of us posted last, but I won't. There's been progress, massive regression, contention with his "sire", and now progress.

Jackson had been doing well until his "sire" started exercising his visitation regularly, something he hadn't previously done. It was only a matter of weeks before his two therapists (without knowing why) had noticed that Jackson began to regress. It was very sad. He had been asking for things (albeit when prompted) and it had gotten to the point where he had forgotten all of his signs. He had been frustrated a lot more often and his therapists both noticed that it was worse after visitation weekend.

It was around that time that the aforementioned Puddinhead got the "bright" idea that it was ok to renege on an agreement with Julie and when he did so, that he didn't have to leave. Big mistake. Big, big mistake. Police were called repeatedly (twice by him, once by us) and in all cases, he came across looking like either a whiner or a mental patient. What he did discover in this process was that I was correct, in that if he didn't leave when I told him to (it being my house), I could physically remove him using considerable force, something I was prepared to do. Luckily for him, he wised up just before it was getting to that point.

It was also at that time that Julie, in consultation with Jackson's therapists and various doctors, changed the visitation to one hour per week, during the week. This was done as a measure to preserve his health since there was a distinct pattern of regression.

Since that time, Jackson has done much, much better. He's signing again and is even spontaneously asking for some things, using multiple signs. For instance, he will sign "apple please" or "more please" and then he'll sign "thank you" and will even do this sometimes without being prompted.

His meltdowns are much less severe, though they are still there.

Probably the biggest issue we have is with him waking in the night. He seems to want to get up at 4:00 every morning and that's really beginning to wear on Julie (since she lets me sleep because I have to go to work).

Stack Monster

2007-05-21T14:13:00.001-04:00

You've heard of the cookie monster? Well, we have the Stack Monster. It's my understanding that stacking and lining things in a row are very common in autistic children. I'm here to say that Jackson is no different in that regard. He will stack anything, but he really loves stacking VHS cassettes. He'll stack them as high as 15 and then make a "yay" sound (without saying the yay -- imagine just the tone -- he does that without any vocalization) and will then clap his hands. He then knocks them down and starts all over. He'll do that ad infinitum.

Sometimes he stacks them on their sides.

Sometimes he lines them up.

In fact, he found some candy I had left in a bag in the living room. You would think he'd eat them, right? Nope! He lined them all in a row.

It's really as cute as can be.

Hand in Hand

2007-05-06T00:37:00.000-04:00

I haven't shed tears in a while about Jackson's Autism and haven't posted on here either... they seem to go hand in hand for me, right now at least. Maybe I just am too busy to "think" as much as I used to or have I gotten numb to it. I don't think its the latter because as I was looking at a site that I browse for ideas about crafts, cards and scrapbooking, I noticed that they had a gallery for Autism Awareness. People had sent in pictures of scrapbook pages that they had put together. The ones that were shown on this site were the ones that they felt best promoted Autism Awareness. As I was looking through the pages, I realized again how all the children, little and some a bit older, appeared to have nothing wrong with them. There wasn't any outward signs that there were difficulties at all. One had the title of "I wish for words." This was a beautiful little 33 month old boy, oh so cute, dimples, wonderful smile, no signing, no words, no pointing, no communication at all.

It just hit me again as I sat here looking over these pages... even tho Jackson has made progress, its still heartbreaking. I still have a hard time not wishing... remembering when the other kids were his age, even younger and were able to do much more. I realize that some will say that I shouldn't compare children regardless of their issues and even if they don't have any problems but I think thats easy to say. I think, if anyone says that they haven't or don't when their child has problems like these children have, they aren't being honest with themselves. I love Jackson beyond anything I can or could ever hope to explain or express with just words but I cant say that if I could change or take this away from him that I wouldn't. I have had some say to me, "Well, he doesn't realize that he's different. He won't know that he cant do things that others can. He wont realize that he is in "Special Ed". He wont understand the things that people say about him." I guess these things are 'spose to make me feel better about his situation...

WELL...

THEY DON'T!!!!!!!!!!!

Jackson and Progress

2007-05-02T10:36:00.001-04:00

We look back and it's been about a year since we began to realize (and then had confirmed by diagnosis) that Jackson had autism. It's been an interesting year, to say the least. In many ways, Jackson has progressed but in other ways, he's developed behaviors that we wouldn't have expected.

I think that something people who don't have (or aren't around) children with special needs don't fully realize is that even though a child may have developmental and/or other issues, they still have their very own and unique personality. They are still adorable and are still fun. Yes, there are challenges and struggles, but you have those with any child. Jackson's are just different, even more so because he has almost no independence.

One of the things that Jackson has shown a lot of progress in is signing. He may not have much of a vocabulary (probably 10-15 words) but compared to last year, that is quite significant. A year ago, he couldn't let anyone know any of his needs. He would go all day without eating or drinking if you let him. He shows no reaction to being in a wet or messy diaper (and this continues). He had no way of letting us know what he wanted or needed. That was probably the most distressing.

Now, Jackson's able to let us know when he's thirsty or if he wants down. He can sign thank you and he also signs "more please". He knows a few others, but that's pretty much it.

On another front, Jackson's oral aversion has changed. Previously, he wouldn't put anything in his mouth at all. With help from his therapists, he has stepped toward a more typical 2 year old and he will now put small things in his mouth that he shouldn't. That might seem like a bad thing, but it's actually progress. The aversion he had stunted other development.

But then there's the meltdowns.

When he gets upset now it's far worse and he's inconsolable. he won't be held and will literally fight whoever is holding him for as long as it takes. When you set him down, he puts his head face down into his arms and just sobs. If we pick him up again, he goes back to throwing fits. The big concern is that he's also started banging his head. It's not severe at this point, but it's definitely a concern.

There's more that he does differently and other things I hope to blog about again soon.

Jackson and Dawn

2007-04-08T22:25:00.000-04:00

Our oldest Dawn, who is 21, came down from Michigan in February and March to help us with Jackson while Julie had the baby. It worked out wonderfully, because Mary Rose had some issues and had to be in ICU for a week. Dawn was fantastic and she and Jackson got along well. For someone who'd never had any experience with autistic children, she did amazingly well. We know it was stressful for her, but we literally don't know how we could have gotten through without her. She's back in Michigan now and we miss her greatly, not for what she did, but for who she is.

Here is a collage of her and Jackson playing before she had to leave.

Long needed update

2007-03-01T16:50:00.001-05:00

It's been a long time since I've taken the opportunity to update this blog about Jackson. Certainly, a lot has happened both with Jackson and with his family (i.e. us). For starters, Jackson is now a big brother! Though he hasn't met his little sister yet, we're confident he'll adjust well, even though he may have a skewed understanding of Mary Rose's roll in his world. If you want to see a picture of the littlest sweetie, head on over to my personal blog at http://christopherestep.blogspot.com.

This week has been a little confusing for Jackson, I'm certain. Suddenly, Mommy's not there and he has a new person to take care of him during the day, his biggest sister, Dawn. That's our 21 year old daughter from my first marriage who came down from Michigan to help out, as well as meet all of her new siblings. Jackson hasn't been able to see Julie since Monday morning but I'll probably bring him to the hospital tonight to see Mommy and hopefully Mary Rose (who's been in and out of Special Care Nursery since Monday).

Jackson is beginning to learn to communicate, though he does it at his own pace. Signing is the route he's "chosen" or rather has been working for him. He still does "more" sign and says "muh muh muh" when he does it. In fact, he does "muh muh muh" for everything almost. The only other thing he really "says" is when he's about to be made to do something he doesn't want to do (like be held for a breathing treatment) he will say, "na na na na na na na na na na" which is probably "no" since he only does that in those situations. What he does sign though is "milk" and "drink" (which means water for him) and "food". He'll even sign "good job" once in a while. He'll even point to the floor if he's in his high chair or sitting on a lap and wants down, saying " duh. duh. duh." Not in the way a person would say it if they were mocking someone they thought were stupid, like "duuuuhhh" but very staccato as if there's almost no vowel after the "d".

Jackson's meltdowns have taken on a distinctly destructive flavor, though he's still our sweet little boy. Since, while we believe in corporal punishment in general, we know that to use such methods on Jackson would never have their corrective purpose, because he isn't acting out of defiance, he's acting out of frustration, almost every time. Oh, I know there's some defiance there and you can see it in his eyes when he's about to get something he's not supposed to and I tell him "no sir" and start to get up and he runs faster to it. Yeah, there's defiance. But does he understand wrong? I don't think so. I think he understands something basic like "they don't want me to do this thing" or even "if I do this thing, they'll get up and chase me". And that's where it gets tough. Is it a game to him?

That's one of the tough things about handling Jackson. How much is "autistic little boy" and how much is "mischievous two-year-old"? So the "discpline" (in its most literal meaning) that Jackson gets is very, very basic. Jackson gets "denial of freedom" again, at a very basic, but personal level. When he does something he's not supposed to do (like throwing something), he gets picked up and sat on a lap, usually either mine or Julie's. If he starts thrashing about or hitting (which is usually), we hold his hands firmly, but not tightly. We do this only to restrrict his movement. Typically, he'll start kicking at that point and screaming. At that point, we'll also "restrain" his legs, typically my crossing our leg over his. Bear in mind that there is no pressure here, no tightness and absolutely no artificial restraints. That's just wrong.

Since he's unable to move, he'll struggle a bit but as soon as he calms down a bit, we release his legs and then his arms in stages so he can feel some freedom. As soon as he sits there calmly for a minute or so, he can get back up. Ultimately, it's a way of giving him something that he doesn't want (restriction) in a very cause/effect sort of way. Also, it's very, very personal. We're there talking softly to him as much as we can, but also giving a firm (not yelling) "no, sir" when he tries to hit. He gets kisses on his head (when he's not trying to head-butt, which he'll try with Julie more than me) as well as encouragement ("be a sweet boy. you can be a sweet Jackson" and the like.

His eating habits are ebbing and flowing. Something he used to like, he'll suddenly stop eating. Chicken nuggets is an example. Then he'll go back to eating just fine. We give him what we can, because he still doesn't let us know if he's hungry, other than being cranky. He doesn't get a lot of sugary foods (no juice, for that reason) and he eats a lot of grains and pastas. We try to feed him whatever we're eating with some success, but limited.

One of the things I noticed, was how much I've changed over the last twenty years. My patience is not even on the same scale as it was before. Last week, I was putting Jackson in his high chair and he was throwing a fit. He was doing the usual back arching and thrashing, not wanting to get in the chair. His problem was he was over-hungry and didn't know it. It took a couple of minutes to get him in the chair and seated. He was flailing his arms and I went to buckle him in. Jackson began to come all unglued. You see, Jackson knows how to buckle. Jackson loves to buckle. He loves it so much that if you don't let him do it, he throws an absolute fit. The problem is that half the time, he just won't buckle it. You'll hold the pieces for him and tell him to buckle it, but he'll just hold on to them and not do anything, perhaps except whine a bit. Of course, I didn't have all afternoon to wait for him to finish buckling it so I took the buckles in his hands and guided them together. *snap* *snap* and both sides were in. You'd think he'd been poked with a pin with all of the screaming. I got the tray and put in on the high chair and gave him a straw to play with, followed by his food. All was good.

My point in telling that story is that it took about 10 minutes from beginning to end, but I never raised my voice and I never lost patience. I was persistent and firm, but also very calm and methodical. As long as it was going to take was as long as it was going to take. I asked Dawn, "Do you ever remember me being this patient when you were little?" and she laughed and said "No way."

We often wonder why an autistic or otherwise special-needs child is sent to us. When I see how Julie is with him (with them) I know why for her. But it occurred to me that it also applies to me. As long as Jackson needs is as long as it's going to take. I turned 40 this year and while I haven't really seen it as a positive thing (who does?) it has given me cause to reflect over the last 22 years of my adult life and see how much I've grown and what I've become. And among other things, I've become what this wonderful little boy needs, and that's a father that is patient and understanding, and loves him for exactly who he is and not what he might be.

Autism Spectrum Rate Increases

2007-02-09T10:57:00.001-05:00

The CDC has revised its data regarding how many children are born with Autism Spectrum Disorders:

Rising pass previous estimates, Autism disorders now affect one in 150 children in the U.S., a new report from the U.S. Centers for Disease Control and Prevention (CDC) disclosed on Thursday.

Story at The Money Times

Technorati tags: autism, asperger, rett, asd, spectrum disorders, special needs, learning disabilities

Jackson the Fire King

2007-01-15T02:14:00.001-05:00

No, no, no...Jackson didn't get the matches or set anything on fire, nor did he find fire fascinating nor anything of the sort. In fact, this has nothing to do with fire. What it DOES have to do with is Jackson dancing to the Fire King scene (below) in Ice Age 2: Meltdown. This is something he started on his own and it developed rather quickly. He will do the entire dance complete with falling on the ground and making noises which are his approximation of what they are saying. At some point I may post the video of it, but our daughter took it and I'm unsure what else might be in it and I haven't seen it yet. There are specific reasons why they are never seen on the net as opposed to Jackson that I won't get into, but if it's possible, I'll put a vid or pic of him doing the dance sometime over the next week or two. In the mean time, watch the video below to see what has Jackson so enraptured.

Start from about 1:30 into it to see the dance.

UPDATE: I've put a video that still works. Apparently the other one got removed. Sorry about that. It's still about 1:35 in

Technorati tags: autism, jackson, mimicry, dancing, copying, ice age

Mimicry and Understanding Words

2007-01-02T14:15:00.001-05:00

Jackson's been doing a couple of things lately that are nice to see.

He's been verbally copying things he sees on TV. He tries to say "mine mine mine!" in Finding Nemo when the seagulls are on saying that. It comes out as "muh muh muh muh" but it's clearly mimicry because he'll do it every time that part comes on. He'll also mimic some dancing that he sees, too.

We've also notice that he's beginning to understand phrases. Granted, we don't know or have a way of knowing what phrases he will understand, but it's proof that talking too him even though we don't think he understands is beneficial. He'll pick things up in his own time and way and it's important that we reinforce this by talking to him like we would any other child, though with a little more repetition. An example of what he's understanding is that two seperate times he was sitting on my lap and I was talking to him in just a general way ("come here, sit on this leg. you're not going to get that, want your blanket? and stuff like that) and in the same conversational tone I asked him, "Do you want to sit with mama?" and he immediately leaped up and crawled across my lap to Julie who was sitting in the chair next to me.

Technorati tags: autism, mimicry, speech

Parents in Caged Children Case Convicted

2006-12-22T12:33:00.001-05:00

A couple accused of forcing some of their 11 adopted children to sleep in chicken wire cages were convicted Friday of several felony and misdemeanor charges against them.

Source: Parents in Caged Children Case Convicted - Forbes.com

I realize that this doesn't directly relate to autism specifically, but these children were special-needs. I understand alarms (we'll be using them for Jackson, I assure you) but a cage is never warranted. When we take our children and lower them to the status of animals, we degrade them and devalue them. It's one thing to use alarms and devices to notify you so YOU can take measures to protect them, but caging children is something we would expect to see in third-world orphanages and not in the homes of this first-world country.

Justice.

Technorati tags: crime, parenting, special needs, cage, conviction, legal, advocacy, adoption

Jackson's Better

2006-12-18T13:46:00.001-05:00

It was a rough couple of days, but we think that Jackson's pretty much back to "normal". He had some really bad rashes on his bits and his butt and those are gone as well. Fortunately, he didn't get dehydrated though we were concerned for a couple of days because he really didn't want to eat or drink. But he seems back to his old self.

He's still doing what he does with the "muh muh" and signing for more and he'll kinda wave and he said "buh buh" when I was dropped off for work. He's also still spontaneously giggling at nothing we can tell so that's rather amusing. He has a new favorite toy. It's a plastic red bell pepper that's rather heavy. He totes it around and kicks it across the floor (not hard enough to hurt himself or anything) and if he drops it while he's unable to retrieve it he has a minor fit over it.

All in all, it's the status quo.

Technorati tags: autism

Quick and Dirty Update

2006-12-11T11:58:00.001-05:00

Yes, i know it's been ages, almost a month. And yes, I know that it wasn't that good of an update either. I'll admit I've been slacking.

Jackson can communicate bits and pieces, but it's still the same pattern of response-only. He never offers any communication of his own (in the normal sense of communication, I realize that he's communicating all the time, we just aren't percieving it necessarily). One thing he'll do (sometimes) is sign "more" with his fingers and then say, "muh-muh-muh..." when he wants some more chips. Sometimes he'll also respond and point down when he wants off of his high chair. That's pretty much it.

His meltdowns don't appear to be as severe or as frequequent as they were, and that's a good thing. Unfortunately, we're still having some issues with the non-custodial father on his supervised visits following instructions. I realize he may mean well, but as we've tried to explain to him (kindly and not condescendingly) is that Jackson doesn't do things the way a typical child would. That means you can't gently stroke him (light touch = bad) and you can't move his water cup from where it is or he simply won't see it and when you do try to give it to him he'll completely ignore it. Probably the worst issue we have is that he'll keep coming over to Jackson when Jackson goes and sits down somewhere. Even though Jackson gets up and moves away (you have to get attention on HIS terms, even those who live with him do), he'll still go back and sit next to him and try to force him to engage him. Not a good situtation.

Speaking of "engaging". We had a little issue with the OT that has completely shaken our confidence in her. She was trying to work with Jackson on his eye contact. Her means of doing it was to reward him when he looked at her. There are a variety of problems with this. First of all, Jackson, like many autistics, are simply happy to not pay attention to someone. If that means they don't get a toy, oh well. Jackson doesn't even really perceive most toys as wants until he has them. That leads me to problem number two. Once she got his attention she'd give him the toy. When he turned away, she actually took the toy from him. Does any parent want to tell the audience what happened? Of course he freaked out. And he started having a meltdown. The OT didn't take this well. She acted as though it were a personal affront to her and not that he was having a meltdown as a symptom of his autism but said that it was Jackson not letting her have control. I thought, "Duh! Jackson doesn't let anyone have control unless it suits him at the time. The only way to assure control is to take it yourself, and that's not always good." But she was just certain that it was directed at her personally.

One technique was that when Jackson didn't get his way, she turned her back on him. I have a couple of problems with this. First of all, I think it's a huge mistake to turn your back on an upset child that has something in his hand with a history of throwing things. To me, that's just foolish. Second, I question the wisdom of "social punishment" on any child. I understand removing a child from a situation and when they can understand that they can't play with others until they play well, but that's not ignoring them. That is refusing to let their tantrums affect them. Turning your back on them is a literal and psychological rejection of him. Add to that the fact that most autistic children have social issues already and you're going to tinker with those social issues as a means of control? Third, there's the obvious fact that like many autistic children, Jackson is simply happy to be all by himself doing his thing. If you ignore him, he doesn't have a big deal with that. He doesn't desire attention really. Heck, we usually don't know what he desires. That's why we have him in therapy. We do know what he doesn't desire though and that's attention.

And this is what made us realize that she truly has no qualitative experience with autistic children. How could she? She's making fundamental mistakes that I wouldn't even have made before having an autistic child. Just based on "what I had heard" I wouldn't try to use negative socialization as a punishment or a coersion technique. Others we have talked to have indicated the same.

She has no idea how to do the Wilbarger Deep Pressure and Proprioceptive Technique & Oral Tactile Technique (previously called the Wilbarger Brushing Protocol) as I mentioned before and that is beyond disturbing. This is something that all proponents of this say that you have to be trained to use this on a client. She claimed to have been trained, and yet she would scrub him like she was doing dishes. If she was trained, by whom? Al Gore and the Internet? No, because then she'd have a clue how to do it. I'm going to avoid going on a rant right now, but suffice it to say that I'm sorely disappointed that someone who claims to be able to work with autistic children clearly has no experience to speak of in doing so. I fear that she just lumped autism into a generic "special needs" category and assumed she could do it. Regardless, she's not going to be working with him again. In this case, no treatment really is better.

Bedtime and the crib

We knew this time would come, but Jackson can get out of his crib now. He'll climb out and go wherever he wants since he can also open doors. At first he was getting up all hours of the night but we talked to his neurologist about that and he adjusted his medicine so he would be more relaxed and now sleeps through the night without waking up seeming drugged (which he never has anyway).

And now current events

Jackson woke up last night after being in bed for 2 hours. He didn't get out of bed. No, he was vomiting. Julie got him him and over the next hour and a half he vomited 4 more times. He did go back to sleep and slept through the night without incident, but he's a sick little guy today and won't eat much. :(

Technorati tags: autism, ot, wilbarger, therapy

I've figured out what causes autism!

2006-12-11T10:26:00.001-05:00

I was sitting with Julie and we were talking about Jackson when it occurred to us some of the names of autistic children we read about or know. Let me go through the list:

Jackson
Conor
Griffin
Tristan

These alone lead me to believe that I've found the cause. It's parents that give their kids nonstandard names! Don't you get it? If Jackson had only been named Chuck or Jim, he'd be fine. But naming him Jackson was just too much for his little mind.

So for the sake of your children, please don't give your child nonstandard names!!!

Technorati tags: autism, humor

Overdue Jackson update

2006-11-20T10:45:00.001-05:00

It's been a while, I know. The intent has been to update this on a near daily basis but as you can see that obviously hasn't been done. So, I thought I'd take the time to quickly go over a few of the things that have happened the past couple of weeks.

Jackson's throwing has gotten worse and worse. He doesn't do it just when he's upset, either. He'll grab a block or a toy and throw it directly at someone. Redirection doesn't seem to be working as well on that front, either. We've taken to holding him tightly and restraining him with our arms for about 30 seconds and then letting him back down. That seems to work after a couple of times. It's not that I think he understands that it's a punishment or a consequence of his actions, but rather that he gets so upset being held and focused at what's happening that he forgets about the throwing.

What's also "interesting" about the throwing is that it's deliberate. I don't know why it's happening and I don't know if he does either, but there's no question it's intentional. He will throw something or hit something and then look for a reaction. If you tell him no and sign it to him (which we think he understands) he'll do it right again.

He's responding to therapy somewhat though Julie can say more about that because I'm not there when it happens.

We also discovered that his OT has been doing his brushing therapy wrong. It's supposed to be one direction, from the body to the extremety that she's brushing. But she does it back and forth. Everything I've read about the Wilbarger brushing protocol says that it's crucial that it be done right and by an OT who has been trained to do it correctly. She says she has been trained and yet she does it completely wrong. How can this be? Normally, I'm not one to question the techniques of someone who is supposed to know more about things than I am. I certainly don't claim to know more than any kind of therapist, but I do know how to do research and the evidence is clear that she's doing it wrong. And that completely shakes my confidence in that therapist.

Julie is going to to talk to her this week about it though.

I'll update more later today on some other things about Jackson.

Technorati tags: autism, ot, occupational therapy, brushing, wilbarger

New Drug for Autism Approved

2006-11-08T22:52:00.001-05:00

The FDA has approved Risperdal, an antipsychotic drug, for use in autistic patients.

I'm by no means anti-drug as anyone who reads this could attest. However, I am a bit concerned when autism itself is being targeted as the market for this drug when nobody truly knows what even causes it in the first place. I like the quote from the story:

And the National Autism Association, an advocacy group for families of autistic children, has serious concerns about Risperdal.
Wendy Fournier, the association's president, said medications such as Risperdal mask symptoms. She likened its use to prescribing pills for a headache without addressing the cause of the headache.

This scares me. I take Ritalin. I need Ritalin. But I also know how Ritalin is abused by educators and practitioners who don't want to take the time to learn how to deal with the students. I'd hate to see Risperdal become the same thing.

Technorati tags: autism, drugs, medication, risperdal, treatment

Sleep

2006-11-02T09:19:00.001-05:00

Jackson's been having a difficult time sleeping lately. It's not that he doesn't go to bed or go to sleep, it's just that he doesn't seem to get much sleep at night. He ends up falling asleep in the car on the way home from bringing me to work and most of the time he's awake when Julie gets him up. Everyone needs sleep, even autistic little boys.

(he did wave and say 'ni ni' when I got out of the car this morning, so that makes me feel good. :) )

Rough Morning for Jackson

2006-10-30T12:35:00.001-05:00

When Julie went in to get him around 6ish, he was wide awake as though he'd been up for some time. I don't think he slept well.

Getting him around and ready was a real challenge. There was a lot of wailing and gnashing of teeth and he really fought anything that was done to him or with him. I think he was just exhausted from not sleeping well.

Once in the car, he was ok though he was not his (now) typical happy self. He wasn't cranky per se, just out of sorts. It wasn't perhaps 15 minutes though and he was completely out. Even the sun shining on him didn't disturb him, which is rare. And it also goes to show that he was indeed worn out. He slept the rest of the way to work.

He was asleep when Julie dropped me off so I didn't get to hear him say "ni ni" (that's Jackson-speak for bye-bye) and kinda-wave like he usually does. You don't realize how much of the little things you get used to and miss when they aren't there.