STAR reading report

So apparently sometime this week Aidan took a "STAR Reading computer adaptive reading test".

His Grade Equivalent (GE) score was 1.3, which means that he reads at a level equal to that of a typical first grader after the third month of the school year. (Right on target!)

His Percentile Rank (PR) score was 61 which means that Aidan reads at a level greater than 61% of other students nationally in the same grade which is average.

His Instructional Reading Level (IRL) is "PP" which means "Pre-primer". Basically that he is at least 80% proficient reading pre-primer words and books. (Not sure what that means - what is "pre-primer"?)

His Zone of Proximal Development (ZPD) is 1.3-2.3 which means that he should be selecting books from that range (I'm guessing this means to pick books for first and second graders, although how I know what grade level a book is on isn't always clear).

So he's doing great on his reading skills! We're very proud because he got this AS WELL AS A HONOR ROLL this 9 weeks. What a smart cookie

First Nine Weeks! Success!

We've had a few bumps in the road over the past few weeks, but we've successfully navigated the first 9 weeks of school. Today Aidan got his report card both for his general ed class AND for his IEP. Figured you guys would all want to know what's up with him so far!

So for his Annual Goal report based on his IEP, Aidan is making some progress and mastery is anticipated on both goals. Goal one is that Aidan would be able to stay on task for 15 minutes, not interrupt or talk back to teachers --- the report card says that "Aidan is able to stay on task for 15 minutes but has to be reminded to stop talking out of turn. We are working on not interrupting and talking back to the teachers."  He is also working on tying his shoes without prompts, but he's having difficulty with the steps following making the first loop. We're still working on it at home and they're working on it at school, he's just struggling with it. I'm sure we'll have figured it out soon!

On his General Ed report card Aidan did great! HE'S ON A HONOR ROLL!!!!!!!! Congrats to Aidan! He's got a 92 in Reading, an A in Conduct, a 97 in Math, a 92 in English, a 100 in PE, a 100 in Art, and a 100 in Music! I'm super duper proud! 

A couple of weeks ago Aidan also read 8 books in one day so he could get a free pizza. The kid is just too smart!

Oh, AND he got a 100 on his practice spelling test today so he doesn't have to take it tomorrow. But that's usually what he does. He's just that darn smart. So there. :)

Bullying - My fears and hopes as a mother

I posted this on Facebook a while back, but somehow it never made it here.

A decade ago (well, more than that now, but close) we watched the horror of Columbine (and other tragedies like Paducah and Little Rock) where the result of bullying was the lashing out of those who were bullied so that they took the lives of others in their desperation.  What did we do? We didn't stop the bullying. We didn't tell our kids how wrong it was or pound into their young brains (I was a kid then, Columbine was my junior year of high school) how much harm and heartbreak they were doing to those they bullied. It was never stressed how very wrong it was, or even what exactly bullying is. We were given mesh backpacks and told we couldn't wear black and made to walk through metal detectors and be watched by security guards and cops.  We were taught fear, not tolerance.

At what point does "harmless fun poking" and "gossip" become bullying and defamation of character? When is it too much? We never taught that lesson. Even adults bully. We say bad things about even our friends behind their backs. I grew up being bullied. Not pushed around or cursed at or taunted, just shunned or snipped at, or worse nasty comments made when my back was turned or people thought I wasn't listening. It still hurts when I think about it, so I try really hard not to. It was so bad that even now, although people are nice to my face, I always wonder what they say when I'm not around - ESPECIALLY if they bad mouth other people behind their backs when I'm around.

Now, the result of bullying is no less tragic.

Instead of killing others, the victims of bullying turn their pain and anger inward. They cut, they cry, they ultimately kill themselves in way too many instances. The pain wrought by "harmless" words ends in the worst way possible. Never is a punch thrown, no kids are pushed down, half the time no mean words are ever spoken to the target's face. It's surreptitious, insidious, and devastating.

At what point do we teach kids better?!? My child has autism. He is disabled, and has a lot of difficulty with understanding social mores. Often he does strange things in order to cope with the world around him (Ear muffs at the grocery store? Roaring at friends when things are overstimulating him? Melting down for 45 minutes when he can't express his needs?).  He is afraid to be around our next door neighbor's 9 year old daughter (or their son). He knows that she says mean things to him, calls him stupid, calls him baby, taunts him and tells him he can't play with her and her brother (who is Aidan's age).  Where in the world did she learn this behavior? Considering that when I approached her parents about her brother's bullying of Aidan, we were only answered with "Well Aidan sometimes does stuff too".  Wow. Really?  The fear that the bullying will only get worse as Aidan gets older and kids get meaner terrifies me. I can't even bear the fact that he might have to deal with the bullying I did - or worse.

How do we teach kids what defines bullying and why it's so harmful? When do we finally get across to them that enough is enough, and not only should they not bully but they shouldn't stand by while someone is BEING a bully? How bad do the consequences have to be, how many kids have to die before we finally say ENOUGH IS ENOUGH?!

As one of those kids who was an "outcast" and never one of the "cool kids", I vow that my child will know exactly what bullying is and why it's wrong, and that he will be taught that it is NEVER acceptable, whether he's the one doing it, or someone is doing it to him or someone around him.  Will you do the same and stop this endless cycle of heartbreak?

Is Different Wrong?

I had a discussion today with a psych professor about autism and whether it was an atypical/wrong developmental path or just an alternate/different path. When there are more than 1 in every 100 kids who have autism, then is it truly atypical, or a sign that some children are just evolving into taking a different pathway through the developmental process? If we see the path autistic children take (or rather, paths) as negative and wrong and something to be altered or stopped, perhaps we're hindering their journey.

Ultimately the goal for any child is that they be able to function in society – socially, physically, economically, etc. Our job as parents is to give our children the tools to make that often difficult journey to adulthood and independence. Perhaps we need to take a step back from the situation. What if we approach autism as a different path rather than just a disability. I prefer to think of Aidan as different, not damaged. If I take into account the different path he's on, and try to ascertain what the differences ARE in that path, then I can give him appropriate tools for that particular path he's taking.

Aidan's big differences have been in speech, potty training, and social maturity. He stopped speaking around age 2 and stopped potty training as well, after normal and even accelerated development up until that point. It took him about two years to catch up and he's been about two years behind ever since. He's almost 8 years old and in first grade and that's a really big deal because he's made it this far. I think that as time passes that maturity gap will slowly grow smaller. Each child with autism has a different set of developmental differences or challenges. Actually, EVERY child has a different set of developmental challenges. Most of those challenges are predictable and acceptable and so we know what to do, based on others' experiences, to help the child along their developmental path. Speech therapy, physical therapy, occupational therapy and ABA therapy are tools for autistic children to meet those same developmental goals, but on their own path and timetable.

Same goal, different path. Is that really a bad thing?

20 Exclusion no-no's for teachers with autistic students in their mainstream classroom:

School is starting back! For the kids this can be an exciting time, but if your child has autism both you and he could be a bit worried about what's to come this year - especially if your child is moving into a mainstream classroom! Aidan's going to be in first grade this year, starting out with an aide with him in the mainstream classroom all day.

Here are twenty "obvious" rules for the mainstream teachers out there:

1. Try not to use metaphors or sarcasm - “it's a piece of cake,” or “let's put our thinking caps on” are things don't make sense to me and it will take you a while to explain. Sarcasm is even harder to understand!
2. Don't make jokes about clumsiness or difficulty speaking, even with the neurotypical children – it can make me even more self-conscious.
3. Don't dismiss me as having nothing to say or refusing to participate or not paying attention just because I don't speak up.
4. Don't give long strings of verbal instructions. Offer one step at a time and make sure to give me written or visual instructions or rules no matter how “simple” the instructions may be.
5. Don't assume that because I refuse to look you in the eye that I have an attitude or am lying about something. Make sure neurotypical students understand this about their autistic peers. Don't force a child to make eye-contact!
6. Don't assume that I will understand the gist of your rules or be able to apply them in a different way to other situations. I think of rules as literal, to be specifically followed to the letter in the situation in which they were presented. Generalizations are often useless to a child with autism.
7. Try not to plan class parties or field trips in situations that are loud or noisy.
8. Don't focus on a my disabilities, focus on my abilities. Don't use words like “weird” or “strange” or “bizarre” to describe children or their appearance or behaviors whether they are neurotypical or not.
9. Don't make changes in the schedule or expect me to react calmly to changes in the day that happen without warning. If there are unanticipated changes, don't reprimand me if I do react negatively.
10. Don't judge a me or reprimand me for choosing to communicate with you or my classmates in a way that is not speaking out loud – for example writing notes or drawing pictures.
11. Do not rush me or speak over a me if I'm struggling to verbalize something. Give me time to put my thoughts together and don't try to speak FOR me unless I look for help. Don't assume it's not important if I'm not able to verbalize it.
12. Don't punish me for being truthful! Sometimes a child with autism will say something that is painfully true (Joey smells bad, Ms. Smith's hair looks funny, etc). Also don't punish me for speaking up when I feel something is wrong or I have reached my limit.
13. Make sure my classmates and I have a trusted person we can go to if we need to bring up a problem we are having with fellow students or even our teacher (this is the first step in stopping bullying!)
14. Don't point out the strange behaviors I may exhibit while upset or distracted.
15. Don't fill every inch of wall space with pictures or every quiet moment with music – every poster, scrape of a chair, squeak of the chalk/marker is one more thing for me to focus on instead of my work.
16. Don't become impatient with me for not reacting or responding immediately after you give instructions or ask a question - give me a little bit of extra time for absorbing what you said.
17. Don't assume that certain ways of acting or speaking are “common sense”. Children with autism have to LEARN things that come naturally to most people.
18. Don't offer open ended choices (What do you want to eat?) - instead offer closed-ended choices (Would you rather have a hot dog today or chicken nuggets?)
19. Don't JUST send a note home if I have a meltdown or hit another child and definitely don't WAIT to make sure my mom and dad know! Call that day and explain exactly what happened to my parents. Notes just don't give enough information and aren't urgent enough.
20. Don't move from one activity in the day's schedule into another without some clear transition. Tell me how long until the next activity, what the activity is, and what is expected of my classmates and me during the activity.
    
    
    These are the rules I've got so far with help from the web and Twitter (I'm @thepyxie if you want to follow!). What do you have to add?  Feel free to print these out and hand them over to your child's teacher along with your phone number and email address so you know you can always stay in touch.

Dietary Concerns

This past week we had some “fun” with behavioral issues. Saturday evening we went to the grocery store, and of course took Aidan with us (normally Jeremy goes after work so that Aidan isn't with us – it cuts down on cost some and allows us to more closely examine labels because there isn't a 7 year old needing our immediate attention). He wanted some cheese puffs so without really considering whether they might adversely affect his behavior, we said sure, it would be a nice treat since he really was acting great at the store and had been great at dinner. The next couple of days were a wonderful mess of aggression, hyperactivity, attitude, and inattention. We removed the cheese puffs from the equation and last night and today Aidan has been great. We've seen this kind of thing happen before. In Rockford, on our trip to visit family, Aidan had ice cream twice in one day. It could have been the sugar, but much more likely was the milk since he has sugar in other things without adverse affects. Aidan was impossible for the next 24 hours. At school last year we didn't realize they were letting him have strawberry milk at lunch and for two weeks he was having major behavioral issues at school. Ms. Annie found out and we removed the milk and again, withing approximately 24 hours, his behavior was much more normal for Aidan. Similar situations have happened with both milk as well as artificial sweeteners. How many other issues that we didn't attribute to anything in particular have been caused by similar sources or by artificial colors or flavors or who knows what else?

Milk also causes tummy issues for Aidan – a couple of years ago we took him to the ER for what we thought was appendicitis and turned out to be an impacted bowel. We soon switched him to soy milk and started giving him Activia yogurt (I know, it's dairy and I think we'll look for a pro-biotic soy yogurt) to help with the tummy. I don't know if the milk directly causes the behavioral issues, or if it's actually the discomfort it causes in his tummy that maybe he can't communicate to us, but it seems like a pretty easy solution to remove it.

Should we try just a casein, artificial free diet? Should we do gluten free too? What does the research say? What other diet options are there – Feingold, Paleo?

We know dairy affects Aidan's tummy and his behavior – that's number one to remove. That means all casein/lactose products.

Casein has a wide variety of uses, from being a major component of cheese, to use as a food additive, to a binder for safety matches, paint, glue, plastics and fiber, medical and dental. (wikipedia)

Bad Ingredients:

• milk solids ("curds")
• whey
• casein (sodium caseinate, most commonly)
• lactose (sodium lactylate, frequently)
• lactalbumin and other names that begin with lact
• galactose (a lactose by-product) Most people with milk allergies will have no trouble with galactose, but you should be aware that it may cause problems in some people.
• protein (often "high protein" or "protein enriched" version of another ingredient, such as wheat) The added protein in foods (particularly "high energy" foods) is often milk protein.
• caramel coloring. Many kinds of caramel coloring use lactose, a milk sugar, to help get that rich color. When in doubt, do without.
• Recaldent. This ingredient, found in some Trident brand chewing gums, is milk-derived.
• Fruit flavored Tums contain undisclosed dairy. The original, white Tums are fine.
• "natural ingredients". Some of these may contain dairy products or byproducts. Call the manufacturer (an 800 number is usually listed on the packaging) for further information.
• and the obvious:
• milk,
• butter,
• cheese,
• yogurt...
• canned tunafish. Many brands contain "hydrolized caseinate". However, the low sodium ones in spring water (such as Star Kist), and all of Trader Joe brand tunafish, appear to be milk free.
• chicken broth: Any form, including canned and bouillion. Many brands contain milk solids.
• sour mix, such as what is used to make margaritas, or other artifically "sour" items such as some candies.
• Coconut milk powder (dried; not to be confused with canned coconut milk in liquid form). Every brand I've found to date contains casein, milk or cream.

Gluten (from Latin gluten "glue") is a protein composite found in foods processed from wheat and related species, including barley and rye. 

It is used as a food additive in the form of a flavoring, stabilizing or thickening agent, often as "dextrin". http://en.wikipedia.org/wiki/Gluten-free_diet Several grains and starch sources are considered acceptable for a gluten-free diet. The most frequently used are corn, potatoes, rice, and tapioca (derived from cassava). Gluten is also used in foods in some unexpected ways, for example as a stabilizing agent or thickener in products like ice-cream and ketchup. The standard gluten-free diet does not meet the recommended intake for fiber, thiamine, riboflavin, niacin, folate, iron, or calcium

http://www.urmc.rochester.edu/news/story/index.cfm?id=2860 The GF-CF (gluten free, casein free) Diet is a popular autism diet not shown to demonstrate behavioral improvement. (wikipedia)

The Feingold diet is a food elimination program developed by Ben F. Feingold, MD to treat hyperactivity. It eliminates a number of artificial colors and artificial flavors, aspartame, three petroleum-based preservatives, and (at least initially) certain salicylates. 

• synthetic colors (FD&C and D&C colors) (made with petroleum)
• synthetic flavors (several thousand different chemicals)
• synthetic preservatives (BHA, BHT, and TBHQ)
• artificial sweeteners (Aspartame, Neotame, and Alitame)
  

During the initial weeks of the program, certain foods containing salicylates are removed and may later be reintroduced and tested for tolerance, one at a time. Most of the problematic salicylate-rich foods are common temperate-zone fruits, as well as a few vegetables, spices, and one tree nut. During this early period, foods like pears, cashews and bananas are used instead of foods like apples, almonds and grapes. (wikipedia)

Do I need to really be aware of all of these? How much casein/milk product or relative is too much? Obviously Aidan isn't ALLERGIC to milk or any of the things listed. He doesn't get hives or have difficulty breathing or any major symptoms. But if it affects his behavior it still seems like a good idea to remove it from his diet if it can help him to function better at home and school.

Things Aidan loves that would have to be removed or altered with the casein free diet and the removal of artificial colors and whatnot:

• Pizza,
• ketchup
• ranch dressing
• yogurt
• pop tarts
• certain cereals
• macaroni and cheese/shells and cheese

If we did gluten free it would become even more complicated so I think that would be a last resort. In fact, mom pointed out that some studies show that a gluten free diet could be harmful to someone without celiac disease or a wheat allergy.

Summer Vacation Trip

We went to Rockford this past week and Aidan had a blast! He got to:

• Ride a trolley
• Blow the trolley whistle and ring its bell
• Climb on and around trains at the Illinois Railway Museum
• Visit his Great Grandparents
• Drive Great Grandma's scooter
• Ride an airplane
• FLY an airplane
• Ride on a boat
• Jump off a boat and swim in the middle of the lake
• Drive a boat
• Ride a four wheeler
• Ride in a canoe
• Paddle a canoe
• Light fireworks
• Roast marshmallows

Wow! What a week! It was a wonderful visit with Poppa, Grandma Holly, Auntie Arian, Auntie Mimi, Uncle Chris, and his many cousins (Autumn, Cody, Dani & Addy). He was super great for the 11 hour ride up and the 11 hour ride back, plus all the in between trips here and there.

We did have a couple of close calls as far as his autism. At the train museum he got super hungry and overstimulated and tired, and almost had a meltdown before we were able to get him food. Also, he had ice cream twice in one day and the dairy affected his behavior quite a bit – have to plan better next time! The only other really close call was the last day, visiting Great Grandma and Great Grandpa at their apartment. Aidan was at the end of his rope, tired and overstimulated and homesick. He started pushing and pulling and spinning Poppa's chair and after many times of being asked to stop, I asked him to come with me to the hall so we could talk. Aidan ran away and went in Great Grandpa's office where he proceeded to have a mini-meltdown (aggressive, stiff, arching his back, growling, nonverbal). We got him calmed down, gave hugs and left. Otherwise, it was an all in all awesome trip! Hopefully we can do it again soon. I know Aidan had a blast!

Bullying Act 2

I'm so sick of bullies. So very, very sick of bullies. And having been bullied, I have this irrational fear that if I go talk to the parents of the bullies, then I'll have to deal with bullies of my own. That's a whole other problem though. Anyways, it looks like we have a street gang: 4 boys, ages 10-12, on bikes who roam the neighborhood as “police” (according to the girls who blew the whistle on them earlier today) bullying other kids.

Earlier today, Aidan had gone outside to play. I guess the boys down the street ran across him and started playing with him. He plays with one of the boys, Brant, fairly frequently and Brant seems pretty nice. He's ten. About 20 minutes after he'd gone outside to play (he'd been playing on his scooter out front and then came in about 10 minutes before to ask if he could knock on the neighbor's door to see if they could play) the dogs started barking so I went to go see what was going on. A little girl probably 10 years old was coming up to the door so I opened it and she told me that Aidan was being picked on next door (between the house next door and the next house down). Jeremy was just getting home so he parked his car and came down there with me. Of course as soon as we walked up, before we could see what was going on, they boys stopped everything. I asked them what was going on and at first they all started talking. Then, Brant stopped them and said that it was just him and that he had been play fighting with Aidan. It seemed apparent from the other boys' faces that he wasn't the only one and that some information was being left out, but we just fussed at all of them and asked them whether they enjoyed picking on younger kids and what would their parents say. The other boys were kind of smirking, but Brant looked like he was about to cry.



At that point we were working on dinner and so we came inside and worked on it some more, but Jeremy saw the girls riding around again while he was working out in the garage so I joined him when I noticed him talking to them. They told us that two of the boys are brothers to the girl who beat Aidan up last time, one of which I think might have been taking pics that day. Interesting. They said that Brant's older brother beats him up and when Aidan was getting picked on, that Brant was actually trying to stop them from hurting him and they were pushing him down. I have the feeling that the reason Brant said he was to blame was because he was afraid he would be bullied later if he didn't lie about it. The girls also seemed worried that the boys might bully them because they told on them (which was very much the right thing to do!) Aidan said that one of the boys had him up in the air and was about to body slam him (the girl who alerted me to the bullying said this too).



I'm so frustrated. I think Aidan has a hard time understanding the difference between activities that are just playing and activities that are bullying or are leading to bullying. The only time he knows for sure is when he's already been hurt. The girls said these kids are home alone in the afternoons (at least Brant and his brother are for sure) so it makes it a challenge to talk to their parents. I'm really super tired of this happening. Where do kids learn this crap and why do they think it's okay?

A Second Job?

We all know that Aidan wants to be a storm chaser when he grows up. This has been his dream job for the last 2 years at least. He keeps up with the weather, and wants to go out driving every time he hears thunder. I'm cool with this - it's dangerous but a good goal to have and he gets to have lots of education and interesting experiences and a chance to make a difference. He hasn't changed his mind since the tornado outbreak on April 27th - if anything he wants to even more.

The other day though, Aidan told me he wanted to be... wait for it.... a lunch lady when he grows up. What?! Yeah he said he wants to serve food in the cafeteria at school. I told him I thought he wanted to be a storm chaser and he said, "Yeah - I'm going to have 2 jobs." Then later, "Spiderman has two jobs..."

Wow. Okay, whatever works for him I guess.

April 27th, 2011

For those of us in Alabama, April 27th was a day we will never ever forget.

I woke up to the sound of tornado sirens around 4am and didn't go back to sleep. Aidan went into school late because of tornadoes in the morning, and then was released from school early. Around 11:30am, Ms. Annie from the autism unit called me and asked if I wanted to go ahead and come get Aidan because it was hectic at school and he was very overstimulated. I told her that I would rather wait, and it's a good thing I did. Less than 5 minutes later I was camped out in the hall as an EF-1 tornado passed over us. I finally went to get Aidan around 12:15, about 20 minutes before we were once again hit with a tornado warning. When I got there, power was out at school, it was pouring rain and lightning like crazy so I shoved Aidan in the car and we headed home.  We'd already had hail once in the day and I didn't really want to be caught in it, so it was good that we got home when we did.

We spent most of the afternoon in and out of the hallway. Aidan was hyper, excited and probably a little confused by all the tornado warnings. I'm sure he could sense my anxiety over the outbreak of severe weather. The meteorologists had been warning us all week of the weather we would face on the 27th - there wasn't just the possibility of tornadoes, but it was very probable that we would have several strong, long tracking tornadoes.

Around 4pm I called Aidan's daddy and told him to come home right away. A huge tornado had just ripped through a town an hour or two to our southeast and was barreling our direction so I wanted him to make it home before the tornado hit. Tanner, a town where a friend of mine grew up, and only a few miles down the road from my college got slammed into by the large tornado. Jeremy got home and we looked at the sky outside which was the most eerie shade of pea-green before hurrying into the hall in the center of the house with blankets and pillows and puppies. As the tornado passed, we had no idea that just a mile away houses were being torn into pieces and high tension power lines (the big metal ones) were being crumpled like they were made of aluminum foil. Aidan was visibly frightened as we listened to the TV turned up loud and telling us how serious the situation was. 

We had to run errands Thursday, the day after the storms, which was gorgeous. We had to pass through affected areas in order to get to a store that had power so we could purchase the things we needed (we miraculously never lost power at our home and became a place for those without power to take hot showers and eat hot meals and do laundry and charge their electronic devices). I was stunned to see the wreckage and just how close it was to my home. Even now, I have a hard time wrapping my head around just how blessed we really are, and when I think of my friend who lost his father and step-mother, I wonder what I would have done had I lost my parents or worse Aidan? What would have happened if I had lost my life protecting Aidan from the tornado as Roger's parents lost their lives protecting their grandchildren?

I showed Aidan pictures of the wreckage after we came home from running errands, and he kept exclaiming how "cool" it was. I knew this wouldn't do so we ended up taking him to see in person just how bad things were. Although he's only seven, I felt that since he wants to be a storm chaser, he needs to understand just how serious a tornado is. We explained that these people lost EVERYTHING, and that some of them died or were hurt very badly. Aidan got very quiet and seems now to really understand. I think he still wants to be a storm chaser.

We are very blessed to have survived this ordeal and our hearts and prayers are with those who lost everything.  I encourage you to donate to the recovery efforts - here is a link to the Salvation Army's donation website where you can specify that you want your donation to go to the Limestone and Madison County communities affected by the April 27th tornado outbreak.

Thank you for your thoughts and prayers.