Au natural

I had to quote this article I was reading...

Educational Intervention

Because children with Asperger's Syndrome may differ widely in terms of IQ and ability levels, schools should learn to individualize educational programs for these children.

Some of them may cope well in a mainstream class with additional support, while others may need to receive specialized education. In all cases, teachers should be aware of the special needs of Asperger's children, who often need a great deal more support than first appears necessary.

...because it really helped me with why an Aspergian is considered to have "Special Needs." So often I look at how well The Elder is doing and enjoy the normality of these moments. But then cringe at the thought of him being in a "normal" Kindergarten.

So what is the deal with herbal remedies anyway? What is the best approach to using this method with kids? Some of the stuff on there I wanted for myself! Ha!

As I told The Hub I didn't want to get caught up in the hype of this article, but would really want to do it if I could find a trusted source.

Check off another one, or two, maybe three...

Got the bag today. It's absolutely beautiful! Thanks again Gwen!

Another link I want to throw out there is this extremely touching speech that Niksmom posted. Here is the transcript if you don't have time to watch the video, though the video is well worth the watch.

Also, thanks Karen for my award. I promise I will get to passing it on asap...

Now for that long laundry list of things I need to journal about....

Let's talk about the TEIS meet since I will be meeting with The Teacher tomorrow. Remember this conversation? and then this victory? Well, I met with the TEIS lady on the 11th (2 Mondays ago) and she interviewed me, a pretty standardized interview. Based on the results she agreed that she should send someone to the house to do an evaluation. I got a rush on the appointment because The Younger is having his Trigger Thumb annihilated on March 8th so we had to have it set before then (it was changed from Feb 15th to March because The AP has gone back to Brazil for 2 weeks to visit and renew her license and visa. Hey, I got to check off another one on my list! "The AP has left the building.") Well, this is the rule. He must be 25% delayed in 2 areas of development OR 40% delayed in 1 area in order to receive services from them. When i first heard that I got a little panicky and started to doubt myself and the need to actually have him evaluated. But the lady reassured me again that I was doing the best thing to get him checked out.

What surprised me was that from her interview, she found 2 areas of delay. I was pretty shocked because neither one of them was sensory processing - which in all fairness was not really a category. But he had delays in communication and fine motor skills. If you know my child, this was a huge shock to me. It must have shown on my face because she immediately started to explain why the results turned up that way. It is the fact that she doesn't form proper phrases until he is repeating a phrase he has already learned and that he tends to perserverate when he is anxious, hurt, or scared. A popular phrase is "I want mommy." Now to someone outside of our family that appears very normal, but he will continue to say this even when I'm clearly in site or even holding and comforting him. Hopefully that is just a phase.

(By the way, The Elder was jamming with some complete, sensible sentences, both questions, statements, and responses to questions....he got his IEP interim report today and it was the first grading period that he showed improvement!! He has already met the majority of his goals all in one interim!! And it only took 5 interim periods!)

The second delay was in fine motor which really threw me off. Mainly because it was his motor skills that pretty much sealed the deal for us to realize that The Elder was delayed in his motor skills - because The Younger was running circles around him, literally and figuratively, for example with feeding himself, opening water bottles, etc. Her explanation was not that he couldn't color, draw, cut, etc, but that he uses his fine motor skills inappropriately. He will break every crayon and peel the paper off of them, but won't color with them. He will take apart pens, flashlights, remote controls, and anything that he thinks he can take apart and sometimes successfully put them back together. He will crack open pistachios and mussels on the shell even though the taste of them repulses him. He just wants to open them for us to eat.

So once she explained all that I sat there with a "Hmmm!" look on my face. Not sure if I had caught on to any of that. And I was supposed to be paying attention! The only things that really got my attention was his anxiety and sensory issues. So we have his evaluation scheduled next week, thanks to the Trigger Thumb surgery. Else it might have been a month!

Would really like other people's input on this or their experience. I don't think he has ASD. I have another meeting with The Teacher tomorrow.

-------------------------------------------

The Need for Routine

There were actually a whole series of these but I could never get Picasa to upload them all. (Note to self: See your C: drive for the rest of these videos...)

If you click on the link above you will see a mighty hilarious show. What you would have gathered from the series of videos is that The Elder had created a little routine to the video. In the one video here it looks like just random "dancing" but it actually was a rather evolved routine. He even told me later, "when the pink lights come, I do this." and he struck a pose (the one where he kinds looks like superman about to take off). It was adorable. In each video there was an new step added to the routine somewhere in there. My favorite? The Jazz Hands (which actually looked like he was waving good-bye).

The more intriguing fact of this event, was that music video he was dancing to was on an informational DVD that directors receive early for the upcoming product launch. We are coming out with a very cool customizable compact (not trying to give myself a plug here but it really adds to the hilarity of this story) with interchangeable products. I guess the mechanical nature of the commercial really fascinated him. He kept telling me that he wanted one. Well, I got a free one when i was in Houston and he stole it from me!!! I gotta figure out how to get that back!

In previous videos if I can get The Hub to post it, you can see The Younger playing his "guitar" using a DVD. It is pretty funny. He said, "I play 'tar.....Daddy play cheese." He was using his camera to video it all. Get it? camera? cheese? Har har har!!

-------------------------------------------

Saw The Super Doc again today solo. I totally love her. How could I be so incredibly blessed to have resources in my life that I click with and truly have my best interest at heart. Keep in mind she is The Hub's Doc, but she wants to make sure that I am sane! I love it! Well, I'm one step closer to trying some treatment for ADHD. Sounds ridiculous to some but I am of the thought if I don't try it, I will never know if I need it or can live without it. So I have about a week until I see the Drug Doc.

The Good, The Bad, and The Pretty...

Yes I was in bed all day yesterday. No I wasn't sick sick like the poor family was while I was away. I was just totally zoned out and had no appetite. I guess that is the Bad. But hey, it was our day of rest...literally.

My glands are still swollen but at least I am functional today. The Good includes being able to catch the tail end of the superbowl. I really hate that I missed most of it but I think I truly saw the best part. I also hate I missed the commercials and the half time show. The other Good part is that I proceeded this morning in business as usual fashion. Well, business as usual in theory fashion, but today it wasn't theory it was reality. Here it is not even 10:30 yet and I've done everything on my "have to do" list!!!! I still have some on my "nice to do" list but I guess blogging would be on that list.

The Pretty includes how I feel. Usually Mondays are paperwork days, no appointments, no shower, leave on the pjs til noon type of days. But this morning after I got The Elder ready for school, I got ready...fixed my hair, put my face on (mascara and lipgloss and all), got dressed, and tackled the computer like it was a date or something.

Anyhoo, I'm having video conversion issues with the Need for Routine post that I promised everyone but I haven't forgotten. But I'll take a moment now to update everyone on The Teacher's visit.

Again, I have thoroughly convinced everyone that she is a goddess??? Well, she came and sat down and we didn't the normal, what have you implemented and what is working and what needs work, etc. I took an old hand towel from my mom's that was monogrammed and obviously very loved because it was about to fall apart. "Hey, mom, are you attached to this or can I have it?" I gave it to The Elder for his string tick. You could tell even in his emotionless reaction that he was relieved to have something that was OK to pull and break the strings on. So that was a "check" on the review. Unfortunately there are no more string to pull, but The Teacher suggested that I cut the fringe to simulate hair-cutting so he can be desensitized to falling hair. Hmmmm, interesting, though I think I'll pass on that. He actually did great with hair cutting this weekend. I didn't do a whole lot. Just trimmed the ducktail in the back and his bangs. I think if it grows out a little bit his cowlicks won't be such a pain.

Somehow the conversation came up about The Younger and some of the things that I was concerned about and she asked me to going into detail. I did and she sweetly suggested that I call his pediatrician to get a TEIS referral (Early Intervention - I'm not sure what the T and S stand for. My guess is Tennessee and perhaps Services) to get him into OT right away. She is so smart. She said, "There is nothing wrong with what he is doing but if he can get some Early Intervention, he can learn to control himself and learn other boundaries now versus learning them later when there could be worse consequences" (I think she was referring to adolescent behaviors and temptations like teen sex, drugs, etc.). Now The Elder's Psychologist told us to just watch him until he was 4 (some magic age) because much of what he does might be from mimicking his brother, which I totally agree. However, The Youngers Sensory issues are much different than The Elder's. The Elder has predominantly Sensory Aversions, whereas The Younger is Sensory Seeking. This explains alot. I'm not going to be a warrior on this like I was with The Elder because we both agreed that we didn't believe he has autism. But knowing what I know now about myself and my family and likewise about The Hub's and his family, it doesn't hurt to try to do whatever I can to get him help early. I often wonder how I might be different now had Early Intervention existed when i was a kid. My sensory issues can be just as hard to tolerate as The Hub's or The Elder's, and now The Younger's. But I am more confident about him because I was a Sensory Seeker as a little one and enough falling desensitized me. (Of course I was a cheerleader in college and really got hurt before I was desensitized but hey, better late than never.) If he has the special, inexplicable ability that I had to be aware of where you are in space, then falling was nothing to be afraid of (it somehow turned into falling gracefully) . I've never broken a bone in all of my dare devil antics (I've broken other people's bones and burned other people's legs jumping off motorcycles). I have my shared of aversions that bug the mess out of The Hub. Primarily my smell (olfactory - is that right?), texture in foods, and tactile defensiveness. I digress...

So The Teacher was a huge advocate in getting The Younger some help. Hey, anything to make a 2 year old more manageable! HAHAHAHA!

Now for The Elder, he has been constantly amazing me. I can still see his struggles but his ability to handle them has increased so much. You can see his little brain working. He's even joking now. This morning he didn't want to go to school (I'm going to need to find out what this trigger is - The Teacher insists it is normal but I'm ready for it to be booted out of our routine) so I ended up having to pick him up and carrying him to his room. It was actually cute, I had him behind the knees and he was sitting in my arms like he had fallen into the toilet or something. He could only kick his legs from the knee down which were away from my body. Very effective I must say. But we went about the morning routine and he was being defiant the whole time. Finally I said...

"We can do this the easy way, or the hard way. The easy way is where you get ready by yourself. The hard way is where you have NO CONTROL over getting ready."

"How 'bout........the medium way???"

I didn't know whether to be mad, proud, or burst out laughing!

To everything...my turn, turn, turn...

There again, another lyrical reference in my post title. That's pretty hilarious that I realized that about myself.

Anyhoo, I love the "spectrum" of responses that I got to my last post. Mandolin Mom sent me a text message saying, "when are we going to hear YOUR opinion?" So fair is fair.

When I had this group discussion in person, there was also a spectrum of responses. My final statement was that there isn't a "catch all" comfort phrase for everyone for every situation. In other words, a phrase may speak to one positively and offend another. I think that is what diversity is all about. Acceptance and tolerance is another issue...

I personally find a lot of comfort in knowing that everything happens for reason, season, or lifetime.. That thought gets me through (and will get me through) the toughest times of my life. Knowing that Someone Else is in control is very comforting and it allows me to enjoy my life.

It reminds me of the strategy that The Teacher gave me: "take away his control." In other words, I couldn't give The Elder a choice of what he wants to eat, to wear, to go, etc. I, as his care-taker, took care of that for him. He did not need to be responsible for such things. He did not need to worry about those things and build up his anxiety which came out in very impulsive, aggressive, and frustrating ways. I had a really hard time with this strategy. I was so used to giving him a choice of 2 things, mainly to just get a response from him since he did not answer open-ended questions. "Do you want oatmeal or grits for breakfast?" when I should have actually just said, "We are having oatmeal for breakfast." or "You will wear a coat to school." Again, SO hard for me to do. I still catch myself giving him choices where I shouldn't. (To clarify, picking a movie, toy, game, etc are fine choices. It was his basic needs that I needed to take full control of.) Shortly after starting (not perfecting) the strategy, we started to see a huge difference....he was "freed up to be a kid, have fun, relax, and be happy."

Similarly, I can act out impulsively, aggressively, and in frustrating ways when I'm trying to be in control and do it my way when it may or may not be obvious to me that I am not in control. It gives me much sympathy and empathy to my Kiddos when they are fighting me on things that they can't wrap their young brains around. There are just some things in life that I feel I will just never understand, but can rest in the assurance that somehow, somewhere, it is fulfilling its purpose, even if that purpose has absolutely nothing to do with me.

Great discussion guys! I might do this again sometime. I'm out of town this weekend but will do the drawing for some mystery prize from the responses to the last post (so get them in quick if you haven't yet...you got til Tuesday!!).

By the way, sorry I'm so behind writing at everyone's blog (including my own). I've been away from my computer a lot lately and have been reading posts on my Treo and it is a pain in the you know what to submit comments via a Smartphone! I shall return! Thanks for continuing to visit here and welcome new readers/commenters!

I'm still standing...

You can tell that I think in music. I have a lot of post titles that are songs. Ha!

Anyhoo, we have had a super busy weekend. The Younger has been sick with high fevers since Friday. I started seeing "clingy" signs on Thursday. If he wasn't sleeping, he was screaming. He was actually hilarious yesterday. He was screaming because he was hungry but didn't have an appetite or everything that he requested to eat didn't taste the way he wanted so he would pitch a fit. Finally I got some chips (Tangy Tomato from Flat Earth - yummy) that were pretty flavorful. He was screaming for me to share them with him (they were his). He commanded me to sit down on the floor with him and then literally took my hand and put it in the chips bag. "Share...with...me...mommy!" (said between sobbing)

When we wasn't screaming, he was sleeping. When he was sleeping we were working. I did an interview on Saturday so that got me out of the house YAY! When I was in the house we........ ORGANIZED THE CLOSET!! Now everything is FAR from clean, but it is all so organized that I was excited. And we spend very little money. I told The Hub how proud of myself I was to not be impulsive (ADHD in me?). Usually when I read things like The RB Book I will have grand visions and start working on it right away just to find out that it won't work, I won't like it, I won't do it, or I won't pay for it. But I waited and we actually have very few things to purchse before our masterpiece is complete! The key is that we were very honest with ourselves. Do I put my shoes here ot here....well, will I put them away if they are here? And so forth.

The Elder had a substitute teacher yesterday for part of the day and we got a note home that he had given the subs a hard time. Based on what The Teacher told me last visit, they have parents of former students of the class (all HFA/AS) to sub so that they know what they are doing (about as much as we all know what we are doing though I guess). He got up this morning and said he didn't want to go to school which is very strange. He said his head hurt but he wasn't acting sick so who knows what the true source of his avoidant behavior was because we went to school. It was like, once I finally got his clothes on, he magically wanted to go to school and he finished the routine without a word.

I wanted to post something on Friday to spawn a discussion/opinion poll but forgot so I'm going to make a separate post and maybe it will take the place of Success Sunday that I missed...

Conversation

"It's time to go to school."
"I'm coming."
(You can hear him trying to get out of The Skipper Dog's travel cage. What is the deal with kids and cages?)
"OK, I'm here."

The Hub and I just looked at each other with this "what just happened here" look. He was compliant and used appropriate timely responses to communicate his intentions without the need for repeating on our part. Yahoo!

We have our monthly meeting with The Teacher today. I cannot wait! Doesn't that sound a little odd? I've just been so proud of him lately and the strides that he has made at home since being in school that I want to hear how he's doing at school. The next step will be community and how to transfer his skills to church and other public places, which I think will be simple (note I didn't say easy). The only issue I have is hyperactivity, but then again, he IS four! I'm actually really enjoying seeing the two boys just being boys and romping around the house chasing the dog, wrestling each other to the ground until someone screams, and dragging packaging materials all through the house. I'm NOT enjoying cleaning up after them.

I feel very good today. I think I'll be productive. The Gma is coming to get The Younger for the day while I get us ready for our trip. The Elder and I are wrapping gifts when he gets off the bus (he's been practicing at school) and then we are meeting with The Teacher. The Housekeeper is coming to make me very happy. Then The Hub and I are planning to load up the minivan tonight (36 hours early). I'm being very optimistic!!

Victory!

Thank you to everyone who signed the online petition!!!

From ASAN:

I am pleased to inform you that this afternoon the NYU Child Study Center announced that they will be ending the "Ransom Notes" ad campaign in response to widespread public pressure from the disability community. You can read that announcement here (at the NYU Child Study Center's website). The thousands of people with disabilities, family members, professionals and others who have written, called, e-mailed and signed our petition have been heard. Today is a historic day for the disability community. Furthermore, having spoken directly with Dr. Harold Koplewicz, Director of the NYU Child Study Center, I have obtained a commitment to pursue real dialogue in the creation of any further ad campaign depicting individuals with disabilities. We applaud the NYU Child Study Center for hearing the voice of the disability community and withdrawing the "Ransom Notes" ad campaign.

Twenty-two disability rights organizations came together to ensure the withdrawal of this advertising campaign. Our response to this campaign stretched continents, with e-mails, letters and phone calls coming from as far away as Israel, Britain and Australia. The disability community acted with a unity and decisiveness that has rarely been heard before and we are seeing the results of our strength today. Our success sends an inescapable message: if you wish to depict people with disabilities, you must consult us and seek our approval. Anything less will guarantee that we will make our voices heard. We are willing to help anyone and any group that seeks to raise awareness of disability issues, but those efforts must be done with us, not against us. This is a victory for inclusion, for respect and for the strength and unity of people with disabilities across the world. It is that message that has carried the day in our successful response to this campaign. Furthermore, we intend to build on this progress, not only by continuing a dialogue with the NYU Child Study Center and using this momentum to ensure self-advocate representation at other institutions as well, but also by building on the broad and powerful alliance that secured the withdrawal of these ads in the first place. We are strongest when we stand together, as a community, as a culture and as a people.

Thank you to all of you who have made this victory possible. Remember: "Nothing About Us, Without Us!"

Regards,
Ari Ne'eman
The Autistic Self Advocacy Network, President
http://www.autisticadvocacy.org
info@autisticadvocacy.org
732.763.5530

Reading & Comprehension

Those were always my lowest scores on those standardized tests in grade school. I remember that by the time I was in high school I was very aware of this deficit (being the over high achiever that I am) and would concentrate so hard on the passage trying to figure out exactly what questions they would ask on the next page and I'd scanned the paragraphs in an attempt to memorize the whole thing. I still got low scores because the older I got, the harder and more complex the questions. I've been overanalyzing myself these days in light of The Elder's diagnosis and then the recent suggestion by The Super Doc in our last three sessions that I am classic ADHD. I'm not exactly sure what about me is so classic, but as much as I hate to admit it, the more I talked (just being myself - finally to that point with her), the more she pointed out my traits. Dang it. Just what I needed, another lightbulb moment to explain the madness I call daily life. Now I have to follow the a-ha! trail back to my childhood (that's the OCD in me, which I've always owned up to! Ha!). Reminds me of this post by Kristina. I always wondered why both my siblings have a passion for reading and I rarely ever finish a book (though I did finish Look Me in the Eye). I like to read. I love to learn. But I have to concentrate so hard to focus that sometimes I have to read out loud to myself. And I might get really excited about something that I learned in the first chapter that I'll go make life applications based on that and never finish the book! I know I'm not alone so I'm not ashamed. I just always wondered how my brother could read The Hobbit in 2 days when he was in the 6th grade and I can barely get past reading the title as an adult. The Super Doc doesn't push medication but strongly suggested it with each time I put my foot in my mouth and showed my adhd colors. Well, see my last Success Sunday quote. The good news is that I'm already on the gluten-free-casein-free reduced diet. If I see no significant change then I'll stop the meds. I'm specifically looking for consistent executive functioning skills. I tend to be one extreme or the other. The scenario that really gets me is when I spend all day on my agenda, that by the time I'm done, it's bedtime and the day is over. I think that is why I do well flying by the seat of my pants. The no-reading thing I can live with.

So this post wasn't really about MY reading and comprehension skills, but The Elder's. As you recall I have witnessed him read an entire book by himself. Well, The AP takes them to the library every Friday while I'm at a church group meeting and they check out books and videos (that has actually been great for shaking up his routine. "Sorry we returned that book to the library already, pick a different book."). Well, today after doing some great pretending (The Elder was the bus driver, I was his little girlfriend on the bus, and The Younger was The Elder on the bus - it was hilarious. We also pretended to be in the classroom, but once I told him that the bus driver doesn't go to class, maybe he should be The Teacher, he decided he wanted to be himself so that he could pick a (PECS) card and play games. Then he told me what to say..."Now you say, 'You may now go to your centers.' Say it, just like that."), we decided to read some library books because we hadn't cracked into them over the weekend and he pulls out a sequel.

"Are you going to read it to me?"
"No, you read it."
"Let's take turns."
"OK, you first."
"It was Easter morning...your turn."
"The Easter Bunny hid ten hot-paynk (TN twang for pink) marshmallow...I like marshmallows...chickens, um, chicks. aaaaaaaaaaaaaaaall over the house."

We continued like this until I smelled The Younger. So I leave The Elder on the couch with the book to go change a diaper (Yay! It was solid). As I was cleaning him up and spraying off the diaper (we tend to always forget to use a liner when he poops), I could hear The Elder continue to read aloud. It was so cute! He was using proper story-telling inflections in his voice. He read the rest of the book by himself! You can tell when looking over his shoulder that he doesn't sound words out as much as he tries to recognize the word first. Like saying chicken first, then correcting himself to say chick. In the past, he has said "away" instead of "always"; "engine" instead of "english"; "violin" instead of "vitamin"; etc etc.

Well, I thought I would test his comprehension level and skimmed the book and started asking questions about the the story and he got all of the questions right!

"What color were Ruby's chicks?"
"Paynk"
"What color were Max's chicks?"
"Lellow...and they go pop pop pop pop through the mail pop."
"Mail pop?"
"I mean mail slot."
"How many chicks did he get?"
"Just ten."

I verified with The AP that she hadn't read the book to him before, so it was his first time reading that book. Gushing with pride. Watch out standardized tests! We got a genius on our hands!