April Time Capsule

A Moment in Time...

JP

What is your favorite...

COLOR:
My favorite color is brown. Like Simba or...orange like Simba. That is pretty cool! Did you watch the Simba movie? Yes. That was from the Lion King. Have you watched the Lion King movie? Yeah, I haven't.

BOOK :
My favorite book is Winnie the Pooh. Which Winnie the pooh book? Fun with Manners book with Pooh. But I think "Fun with Manners" is a movie. Do you have a book you like? My favorite book is the Lion King. Well again, that is a movie. Do you have a favorite book? My favorite book is...my favorite book is..."My friends Tigger and Winnie the Pooh. Well, I think that is the new show starting on Playhouse Disney next month. Oh! Next month! Can you think of a book with pages and words that you like? My favorite book is about my Wiggly Wiggly World. Try again...that is a movie! My favorite book is ... If you don't have a favorite one you can say, "I don't have one." Oh, I know. My favorite book is about JP playing soccer. Where is that book? Maybe that is the movie. Yep, that is a movie that Mommy made. Maybe we can watch it? Seriously sweetie. If we were to sit down and read a book right now. What would you want to read? I want to read the book of Pooh. Okay. (I give up)

MOVIE:
Mrs. Ariel said the Book of Tigger. What is your favorite movie right now? My favorite movie is the Book of Tigger. But we don't have this movie. Maybe there was one at the library. Oh, you mean the Tigger Movie book that we checked out from the library? Maybe we can take that movie home and watch it? In the Book of Tigger, Pooh might pop out of it! Huh? We'll just have to see!

FOOD:
Well, my favorite food is wiggleberries. Wiggleberry salad, wiggleberry soup, wiggleberry juice, wiggleberry cake. Who eats wiggleberries? I eat wiggleberries. Mommy, do you like wiggleberries. I've never eaten a wiggleberry. Maybe I'll give you one and you'll take a bite. Sure that sounds good. Where do we get one? We get one at the...maybe there is some at the north pole. Huh, so I guess we'll have to ask Santa for some? Oh...good idea! We'll say "Happy Windsday Santa!" (Windsday is what Pooh thinks Wednesday means)

DRINK:
My favorite drink is strawberry salad, strawberry soup.... Those are something to eat. What do you want to drink? My favorite juice is... is... is... is... is... is... is fruit punch. Cool, I like fruit punch too.

TOY:
My favorite toy is Winnie the Pooh or my favorite toy is the Big Red Car. Yeah, but I am not sure you play with them much. Maybe there is one at OT2. Huh, I think you are right. Maybe I can get it out of the box and take it home and play with it. Can I do that? I think we have to play with it at OT2. But what is your favorite toy at home. My favorite toy is a soccer ball. Cool! And do you like your new trampoline? Yes! With a net on it! That is so cool, isn't it! That means I can jump jump jump!

LETTER:
My favorite letter is...z! Really! What starts with the letter z? Zzzz like sleep! Can you think of any others? My favorite letter is A. The "A" starts with monster? Monster starts with A? The monsters were really scary! And scary? Oh, the monsters were scary. What did the monsters make the letter A say! AAAAAA! The monsters will come and make me kind of crazy! The monsters were driving me crazy!

NUMBER:
My favorite number is 1, 2, 3, 4, 5, 6, 7, 8, 9, 10. All of them! Yes! How old are you JP? I'm 5.

SONG:
My favorite song is..."I just can't wait to be king". Oh cool. I love it! That is what Simba sings in "Sing Along Songs Lion King Circle of Life"! Do you like that video! Oh yes! Do you remember what Mommy's favorite song was? What is your favorite song, Mommy? Yummy yummy yummy there are bugs in my tummy. Oh I love that! It goes like this...(and he proceeds to sing the entire song)

I found a copy on youtube... I love this song!

My additions:

JP's meltdowns seem to have been better this month. His interests are transitioning from Pooh Bear to Superman. We checked out a movie from the library with Disney sing along songs so we have gained an appreciation for the Lion King. He loves the sing along video but I haven't been able to get him to sit through the Lion King movie. Cars has pretty much disappeared.

I find it interesting that JP seems to have lumped Superman and soccer. Superman was big last fall during our TopSoccer season and when we went to put our jersey on this season he demanded his Superman T-shirt go under it. It is as though Superman never faded! So we are dealing with a lot of flying from couch to chair, flowing capes and Clark Kent clothing on the floor. In fact, he has demanded to wear his Superman T-shirt 4 days in a row. I am able to make him wear other clothes outside the house as long as I agree to let him put his T-shirt on when we get back home. It is pretty cute how he puts on his white button down dress shirt over the Superman T-shirt and introduces himself to you (over and over again) as Clark Kent. He then proceeds to ask if you want to see his supersuit.

JP has really done well with all the school assessments and all of our other services this month. (Gymnastics is good yet bad as I mentioned on a previous post) OT has been great, speech has been good. He has even been interacting more with the other children at his YMCA class. He and T are getting more interactive and are proving to be very good for each other. It really is sweet how they both seem to look out for each other!


Biggest stims - A lot of Pooh Bear and Superman scripting. Some Charlie and Lola scripts from his visits to the PlayhouseDisney website. Oh, and nose picking!!! Ick! I think it is allergy related but it has turned into just a nervous habit! Instead of chewing his fingernails he is now constantly jamming a finger up his nose!

Not such nice phrases thanks to our Manners with Pooh video...

Mommy can you be quiet. (whenever Mom asks JP to do something he doesn't want to do)

You are driving me crazy. (usually scripted and used during a period of excitement--not anger)

A screeching yell (monster related to the Pooh video as well)

***This is so unfair. We get new videos from the library to mix it up and get out from under the same old scripts. And what do we get....more scripts!***


Bed time books:

Baby T

FOOD: doughnuts, fruit snacks, cheese, applesauce, yogurt, chicken fingers, ramen noodles, green beans, oranges, macaroni and cheese, Hamburger Helper Cheesy Beef Taco, pickles, popcorn, potato chips, summer sausage, crackers,

DRINK: THE BOTTLE IS GONE! But so is milk. He refuses to drink milk from a sippy cup. I've increased his dairy from other sources and keep presenting a sippy with milk. (Duh, I just thought about trying to get him to drink milk from a cup with a straw. I'll give that a try today!)
Essentially he will drink anything in a sippy cup and anything with a straw! However, if there is a straw present he will not drink from the sippy cup anymore.

MOVIES: #1 Wiggles, #2 Baby Einstein.

TOYS:
Climbing on anything and everything: chairs, tables, couches.
Grabbing at anything I can reach: curtain pullies, light switches, door handles.
Shape sorter
Paper and any sort of writing utensil
JP's Leap Pad - use it to scribble the pen
Sandbox in the backyard
Loves the slide and baseball and tee in the backyard.
Loves to drop the basketball through the hoop.
Anything in the bathtub!

Life still revolves around the big people world. T tends to want everything that he can't have and definitely wants whatever big brother has! He is amazingly fast and can scale a chair on to the table in mere nanoseconds. He loves to grab bowls or water glasses that find themselves too close to the edge of the counter.

BOOKS:
T is not really a book lover. I need to carve out more time for us to read one on one.

WORDS/ACTIONS:
(against my better judgement I will include these...I'll try not to over analyze)

Daddy, BaBa (bottle), ball, I did it!, Bye Bye(with a finger wiggle), baby, straw, bath, puppy/dog, all done, Mama, head, backpack, car, duck, cup, more, peek a boo, noisy/sloppy kisses, blows noisy kisses, touches head during "monkey jumping on the bed", wags finger no during the "no jumping on the bed" part.

Will grabs your nose, eyes, mouth, ears if you name the items.
Will pounce on JP if we say "Dog Pile".
Will head to the stairs if you say it is time for a bath.
Will head to the refrigerator if you ask if he wants juice.
Will wave bye bye if you start to get out the coats.
Will give you his feet if you have his socks and shoes to put on. (unless he is in the mood to run away)
Will bring food from the pantry to Mom. Usually goldfish or fruit snacks.
Will run from you (with the naughty item) when you tell him no.

Heard but not repeated... he labeled a picture of JP and himself by saying both of their names clear as day!

Shamefully I will include these...I hope they are nothing but collective moments of paranoia but I need to document them for reference.
Fear of the parachute at YMCA class
Fear of the tunnels and forts at the YMCA class. I put him inside them and he just stood there screaming.
Fear of the plastic bubble wrap all the other kids were jumping on at the YMCA class
Huge tears during JP's OT when he tried the "flying aparatus". It is very noisy.
Fear of the trampoline in our backyard.
Won't look in the sky when I point at an airplane. They are very noisy yet he is oblivious.
Seems really bashful around other people.

A taste of competition

Gymnastics class is great. JP loves the activity and his teacher. But I have to ask the question that is haunting my sleep right now. Why can't we just have a positive experience? Can't anything just ever be good? Why does there always have to be a dark side?

I guess I should start at the beginning. Our first experience at gymnastics was a one on one assessment with the teacher. She did amazing with JP. She knew when to push and when to pull back. She even gave him the freedom to explore the equipment without the pressure of performance. She is an occupational therapist by trade and recently started this gymnastics facility. Ultimately, her adaptive gymnastics classes are serving as a supplement to our OT sessions as well! JP really shined to her that first day. And I need to state for the record that he still loves gymnastics and is excited to go see Ms. Liz.

After our assessment I made sure that he understood that when he returned to the gym the next time he would have to share Ms. Liz with other children. He was okay with this. He actually seemed excited to add children to the mix. His response was, "Oh! Children! Yea!"

Then we went to our first class. I initiated a conversation with JP on our way home. I asked if he had fun at gymnastics. "Oh yes!" he exclaimed. Then he proceeded to say, "Next time there be no children!".

Liz had recommended a Monday class because she said that there were two very verbal Asperger kids in there. They are 2 years older than JP but she thought it would be a good fit. Plus her other classes had larger class sizes and in the Monday class it would be 3 adults/3 kids!

I was excited to have these more verbal peers. I kept thinking that this would be a faster pace and more similar to a neurotypical experience. Ha! I don't know why I would think like this. I was doing exactly what I hate others doing. I was assuming that higher reaching skills means higher functioning. People assume that JP's verbal skills make life easier for him. I get defensive in those situations. And here I was making that same assumption about these Asperger children. What can I say...I had a momentary lapse into fairytale land.

The one we will call "DramaBoy" is very lethargic. He is very big for his age and awkward. He has pretty severe motor planning issues and tends to "fall down" rather than try the task. He claims he falls down while trying but he isn't a very convincing faker. Ms. Liz always dutifully checks his limbs to make sure the pain he "feels" is nothing serious and then urges him along. Once she gives him a good bill of health, it is amazing...the pain stops and he gets up. He is adorable!

The second little guy we will call "Champ". Everything is a competition with this guy. He is the best kicker. He is the best jumper. He is simply the best. He is pretty rambunctious and he wants to be doing whatever anyone else is doing. If someone else is on the beam he wants to be on the beam and he proceeds to tell you that he did it better. I guess the easiest description would be to say that he perseverates on being the best. And unfortunately those around him are always the losers. I am sure he is a good kid. He is just a bit much to take right now. Let's hope it is a phase.

Unfortunately, this is not a very beneficial relationship for either DramaBoy or JP. They are both so anxious about trying new things. They are worried that they can't do it and JP is rarely willing to try something unless he is certain he will succeed. Now imagine having Champ tell him that he is always doing everything wrong.

Last week when we were getting ready to leave JP and I were reviewing his sticker chart. They get a star for every new skill they try. Well, we started mid session so JP only had a handful of stars. Champ's chart was full. He came over to us and grabbed JP's chart. He looked at it and stated matter of factly, "I'm better than you. Mine is all full". My jaw opened and my tongue felt so heavy that I couldn't form words. Champ's Dad chimed in and said, "You've been doing it longer" and ushered Champ out.

Here is the frustrating thing. I am just not sure what level of explanation I need to be giving JP. Initially I didn't think he was even aware of this "competition". However after last week he was pretty quiet after Champ's parting jab. I tested him out when we were talking to Grandma this weekend. I asked JP if he liked gymnastics. He said, "Oh, yes!". I asked if he liked Ms. Liz. He said, "Yes!". I asked if he liked Champ. He said, "Winnie the Pooh lives in the hundred acre wood". I take that as a no.

Lesson Learned: He knows what he doesn't like even if he can't tell me. I guess I have to mind read.

Last night was week 3. Well, JP was pretty defiant. He wouldn't stand on the line beside the other boys. (He didn't articulate this but this is my theory. I watched every moment trying to figure out why my child who was excited to be there was being so obstinate.) Champ was in the middle. DramaBoy is not as threatening to JP and I think that had DramaBoy been in the middle JP might have responded differently. He is willing to do the tasks as long as he could stand on a different line several feet away from Champ. He would look at Ms. Liz and even DramaBoy but he gave no attention to Champ.

Lesson Learned: I have to figure out how to empower JP to deal with Champ and all the other Champs out there. He needs to understand his feelings. He needs the words.

The exhilarating part of this lesson is that JP is socially aware! Often I wondered because of his uncanny ability to ignore an elephant in the room. So his reaction to this is is really quite huge. And yes, I am grateful that he has a reaction. However, I am sitting here terrified because this also means that he will be more vulnerable. Right now I am perseverating on the bully implications in our future.

Here is a whole other dimension that we have to help him figure out. And I don't really know how much to say. Sometimes I worry that if I say something like "Champ wasn't very nice when he said that" then I will be putting bad feeling in JP's head. I worried because I didn't want to put negative thoughts in there if they weren't already there.

But based on JP's behavior last night I am convinced that the negative feelings are in there he just doesn't know how to verbalize them. He knows he doesn't want to be around Champ but he doesn't know how to distance himself. Unfortunately, with only 3 kids in the class it is pretty hard to get away.

Now the bad news...Champ goes to the school JP will be going to next year. There is a very good likelihood that their paths will cross over and over again! I sure hope this competition is a phase!

(Big sigh....)

Snippets of conversation from April

Various snippets from the past month.

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JP just returned from preschool. He is eating lunch. JP knows that Dad is working from home today and expected Daddy to be here when he got back from school.

JP: "Mommy, where is daddy?"

Mom: "He is out for a little while. He'll be back soon."

JP: "How did you let this happen!" (This is said in his Christopher Robin voice. In one of the videos, the gang loses the neighbor's dog. Christopher Robin pitifully cries, "How did you let this happen" upon his discovery that the dog is missing.

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The boys almost always have a toy with them in the van. I guess you would call it a fidget. Sometimes it is a book. Sometimes it is a car. Yesterday JP decided to have the sewing tape measure. ???? This was when the boys went over to a friend's house to pick up a trampoline that we are going to set up in our back yard. T and JP were hanging out in the van while Dad loaded the contraption.

Here is what Dad saw...
JP was flinging the flimsy tape measure around like a lasso and throwing at at T while yelling out "I capture in the name of the hundred acre wood". It looks like poor T has become a heffalump.

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JP is eating breakfast playing with his superman action figure. He is reciting scripts. Mom walks into the kitchen with his backpack to tell him to hurry up so we can get ready for the van.

Mom: Hurry up bud, we gotta get ready for the van.

JP: Tomorrow, when I wake up there will be a Superman CD and storybook.

Mom: Uh, I don't think there is a Superman CD book. I've never seen one.

JP: We can get one. (spoken matter of factly)


(By the way, Sunday was the start of soccer. We were heavily into Superman during the fall soccer season. In fact, we became Superman and flew from goal to goal during most of the games. Apparently, his mind has blended soccer and Superman because he has been talking about Superman ever since!)

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JP: Wait, I got an idea. Let’s watch a movie.

Mom: Well, what movie do you want to watch?

JP: I like to watch “Fun with Manners”

Mom: Oh is that Wiggles movie?

JP: That’s the Pooh movie, silly!

Mom: Oh the Pooh movie we got at Walmart.

JP: Oh, I think we get that at the library.

Mom: Are you sure?

JP: Yes, I think so. Maybe we could watch it.

Mom: Hmm. Where should we watch it? In the bathroom?

JP: Or, not in the bathroom! We can watch it in the toy room. Maybe I’ll go get it. I’ll be right back.....Mommy! We found the movie! We found the movie! I found that movie! Mommy see! I know! Let’s watch it!

Mom: Okay should we watch it on the computer?

JP: Hmm. That would be silly.

Mom: You are right that would be.

JP: Maybe, the tv.

Mom: Hmmm. We could do that.

JP: Let’s watch it together.

Mom: You want to watch it with me?

JP: Oh yes!

Mom: Really? Why would you want to watch it with Mommy?

JP: Yes, because the words will spell…now on video cassette and now our feature program.

Mom: Oh is that is what is on the video?

JP: Oh yes…maybe I’ll go put it in and push play. Or I’ll put it in and you’ll push play. That is the idea, right?

Mom: Okay, let’s go!

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JP:"Let's make words on the computer!"

Mom: Shall we talk about what all you have done today?

(preschool, lunch at McDonald's, OT2)

JP: Oh, but I'll say another one. How about we talk about Johnny and the Sprites.

Mom: Hmm. Do you like Johnny and the Sprites?

JP: Hmm. But I like Pooh bear.

Mom: Yeah, but Mommy doesn't really want to talk about Pooh bear right now. Do you like Johnny and the Sprites?

JP: Hmm. But I ...How about I talk about some stories.

Mom: What stories?

JP: The story about Pooh.

Mom: But you see that is about Pooh bear again and I don't want to talk about Pooh bear.

JP: But I got an idea.

Mom: What's that?

JP: To talk about some activities.

Mom: What activities?

JP: Some marble activities.

Mom: Some marble activities?

JP: Oh yeah.

Mom: What do you mean?

JP: I mean a BIG marble. After that we'll have to get a magic one. But Greg does some magic.

Mom: Greg Wiggle?

JP: Oh, yeah. He's on the Wiggles.

Mom: Do you like the Wiggles.

JP: Oh yes!

Mom: Who is your favorite Wiggle?

JP: My favorite Wiggle is. Greg is my guy. But Pooh is my guy.

Mom: What color is Greg?

JP: He has a yellow shirt.

Mom: Oh, is he the one that sings.

JP: Oh, yes. That's right!

Mom: What is that song about..is it the big blue car?

JP: Hmm. That's not a song about a big blue car. That is a song about music.

Mom: So do they drive a big blue car?

JP: Oh, all the Wiggles drive in the big red car. Greg and Anthony and Jeff and Murry drive in the car.

Mom: Do you remember who Mommy's favorite Wiggle is?

JP: Your Wiggle is Anthony.

Mom: No, I think my favorite is Murray.

JP: Oh, Murray? Whose Murray?

Mom: He's the red Wiggle.

JP: He is?!

Mom: And I think he likes to play the guitar.

JP: How about we talk about animals.

Mom: Okay, which animals do you want to talk about.

JP: A yellow bear with a shirt on it and Pooh for his name. But Christopher Robin's very best friend was Winnie the Pooh or Pooh for short.

Mom: Okay...Mommy wants to talk about what you have done today.

(preschool, lunch at McDonald's, OT2)

JP: Oh, okay.

Mom: What have you done today?

JP: I have done...trying to get in the ball pit. But Mrs. Chris pulled him out. Kristine pulled me out.

(Chris is OT, Kristine is college student that works for us with our home program. Kristine was not at OT2)

Mom: What did she want you to do?

JP: She wants me to put on my shoes.

Mom: Did she have you swing today?

JP: Yes. I do it at OT2.

Mom: Did you play with another little boy?

(The ball pit at OT2 had a big Chuck E Cheese bouncy ball in it. Sunday we went to Chuck E Cheese for JB's birthday party. JB is a fellow spectrum child. JP is mixing up events from Sunday with events from today's OT2 session. Today at OT2 JP worked on activities such as swinging with a peer, James. He and James had never met before. It went well. Sorry but even I get confused during this conversation.)

JP: His boy is James. We came to Chuck E Cheese. JB was there. Did we get inside because Chuck E was there. He was making a Chuck E show.

Mom: Oh, was he playing instruments? Did you like his music?

JP: He has his string. And then Chuck E saw real Chuck near by.

Mom: Was real Chuck E standing with the kids?

JP: Yes. Real Chuck E has his mouth open. And he has a hat with a C on it. We give the present to JB but he throwed the candy.

(JB was very anxious about the "party". He didn't want gifts because he doesn't deal with the expectation well. His mom warned us that he wouldn't appreciate gifts. He would freak out even if it was a gift he wanted. Mom suggested we give him a package of Airheads candy because he loves them. We didn't wrap it so that he would know right away that it was something he would like. This was the first JP mentioned the events. At the time I didn't think about talking to JP about JB's "unexpected" behavior. I guess I didn't even think that JP would be confused. Duh! Strike one for Mommy! )

Mom: Why do you think he did that?

JP: Because the candy might need to hang. (huh? I'm not sure what that meant!)

Mom: Well, I think JB threw the candy because he was scared. He knew he was supposed to say something to you. Something like "thank you". But he couldn't think up the words and he looked around and all the adults were looking at him. He got really nervous. So he grabbed the candy and threw it.

JP: That wasn't very nice.

Mom: Nope that wasn't very nice. But JB was scared. He was afraid to have his birthday because he thought people were going to give him toys that he wouldn't know how to play with and they would expect him to say words when he didn't know what to say. He was really nervous. But we were there to help him celebrate and learn how a birthday party works. You did a really good job helping JB celebrate his birthday!

JP: Chuck E said where a kid can be a kid! Does Chuck E have an idea?

Mom: What is his idea?

JP: His idea was to find his real friend. They were friend Chuck E's. But I had an idea for Chuck E. The idea is for Chuck E to sing but if he doesn't sing he turns back into a Chuck E Cheese and I belong to Chuck E Cheese. Chuck E might play with me. If he does? He won't sing anymore. But if he don't he turns back into a mouse and I belong to me and Chuck E belongs to me. Where's Chuck E?

( I am thoroughly confused!!!!)

Mom: Hey! I have a question for you. Do you remember who mommy's favorite Wiggle is?

JP: Your favorite wiggles is? Greg?

Mom: Nope, I don't think so.

JP: You don't think so?

Mom: Nope, do you remember who I told you?

JP: You told me Murray.

Mom: That's right! So who is Mommy's favorite wiggle?

JP: Murray.

Mom: You know that because Mommy told you. You did a good job listening to Mommy, didn't you!

(I am stopping the dictation now because that conversation thoroughly exhausted me!)

To Do List - Friends

1. Friends.

This is a confusing word even for us neurotypicals. I have avoided applying the word to JP's classmates because I don't want to confuse him between the definition of a classmate and a friend. Someone once told me to be careful. They explained that it was risky to teach our children that their classmates are their friends. After all, this might get confusing if or when a classmate bullies them. They need to understand that friends do not bully you!

A few months ago we went to lunch with my aunt and she asked JP who his best friend was. He stared at her blankly and then went into a stim/script about his current fixation because he knew she expected a response but he had no idea how to answer. So I've been reflecting on the fact that this wasn't an unreasonable question for a 5 year old. Perhaps inappropriate to ask a young child with autism but other 5 year olds can tell you who their best friend is and who are NOT their friends and even in some cases who they are going to marry! Yeah, we're not there.

Truthfully, I am not sure JP has a friend. We do lots of playdates but he could really take it or leave it. When I tell him we are going to a playdate he is excited and even will say the child's name excitedly but he never talks about any of these children outside of the context of that playdate. I believe that a few of our autism friends will stay in our lives as "friends" but JP is definitely going to need help learning how to make and maintain a friendship.

I started today by asking JP if he knows what a friend is. He uses the word continuously when quoting his Winnie the Pooh lines. He knows that Pooh, Piglet, Tigger and the rest of the gang are friends. But he didn't have an answer for me. So I told him that a friend is someone you enjoy playing with (later, I'll work on the critical piece where they have to also enjoy his company). He kind of ignored me so I asked him again. No response. I repeated it again. Then I tried to talk him through it. We like going to Burger King with G. We have fun playing on the playground with J.B. after speech. I mentioned that we like playing trains with J.A. His response was an excited "Oh, yeah." But when I asked if he could tell me who some of his friends were...he just ignored me.

So I guess we will start working on this. I think I am going to make a "Friends Book". I'm going to get a picture of our peers and make a page for each child. I am going to write down things we know about that child such as "...likes trains or likes swinging or likes Superman". These will make a reference for JP as I work on playing appropriately to maintain this friendship. For example, if he knows his friend likes trains than we should get the trains out to play when he comes to visit. Then we can work on skills like sharing our beloved Thomas (the coolest train ever) in order to make our friend happy.

2. Break the Winnie the Pooh obsession.

We have cut back, really! We have! Yet Pooh is still ruling our lives. Perhaps I have a greater motivation now that JP has started quoting the line..."I am a bear of very little brain". I may be more sensitive to this given the stereotype regarding the intellect of an autistic individual. I know that his repeating this line is just scripting but I fear that it sets him up to get picked on. Bless him that he doesn't think there is anything wrong with being "of very little brain" and I agree with him. Although I don't think he really even gets the meaning assigned to that phrase.

However, I know that I am also more sensitive to this because of something I overheard on Wednesday. We were at a local indoor play spot when I overheard a herd of 7-8 year olds ridiculing another child. One of the alpha males was holding out his hand and making a "dumb face" and saying, "Hi, my name is Mak and I'm a retard." I don't know if Max was there. I don't know if Max was his best friend or a classmate with special issues. I know it sent chills down my spine. I couldn't think up a way to interject myself into the situation to try and educate the little monsters. It was a group of 4 boys and 4 giggling girls who were busy acting way to cool for their age.

I stood there frozen wanting desperately to interject myself somehow to teach them a lesson. But I didn't know any of the children. They were jumping in a bounce house close to where my children were playing but not where we were playing. Since JP wanted nothing to do with the "castle" (as he calls it) we really had no cause for interaction with the monsters. So I just bit my tongue. If we had we been playing in the same area I might have felt that I could say something. But now I feel sick for letting that transpire. I know it was kids being kids but I am terrified of my JP being the butt of their jokes. And like it or not, he probably will be.

So my new goal is helping him understand this part of human nature and hopefully realizing that it is a flaw in the other children and not him. Most of all, he needs to learn who his friends are and who they are not. He is going to be hurt a few times in his lifetime. We all are. Even those of us without autism.

But I vow to start helping him understand this nasty nature of human beings. We'll have to start at the beginning since he doesn't really even get the whole relationship thing. I don't think it is too early and if we pace ourselves he might be able to figure it out before we get to puberty. Of course, then all the rules change!

We are different

Just feeling a little guilty about yesterdays outburst.

First an apology about the length. It just kept going and going and going. This is exactly how my "To Do" list feels! Secondly I want to clarify that living in my state is not all bad. We have beautiful landscapes if you life flatlands and cornstalks. The people are friendly. In fact, here in the midwest, if I encounter a stranger while walking in my neighborhood we actually say hello to each other. In fact, I can even go for a long walk in my neighborhood without fearing for my safety--even after dark!!!

The job market is okay and the salaries are okay considering our cost of living is very affordable. Homes are reasonable (even though the property taxes are ridiculous!). All in all, life here is good.

But (you knew a "but" was coming--didn't you) this is a very conservative part of the country. One of my biggest frustrations is that the status quo is the only acceptable path here. Shamefully I ignored politics until the last few years because in my state my voice isn't heard. Most voters follow their party rather than vote for the issues that they think are important. Everything is almost always black or white. For the record, I am neither Republican nor Democrat. I don't really affiliate with either side. In my opinion, they are all ineffective once they get into office anyway. It is the nature of politics.

I ramble about all of that only to illustrate that autism has made me very frustrated. I love my son and he is doing great. But in the quest to do everything we can for him we have had to travel some different paths. We can't just follow the status quo. Our life is not black and white.

When your child is different you spend a lot of time reflecting on how your life experiences compare to those of your neighbors. Of course, Autism is not all bad. I wouldn't change anything about my son. I just want him to be the healthiest and happiest little man out there. But we have had to explore issues regarding special diets, supplements, and various therapies that are not mainstream. I hate explaining these to family and friends because they always look at me like I sprouted a third eye. How could I question the medical establishment or the government? How can I say that what the school offers in services is not enough? Who am I to expect specialized services? Please don't think that I am calling these people simpletons! I used to be the same way. I trusted that those in influence were looking out for my interest.

Autism has taught me that life is not black and white. What works for one may not work for another. This does not mean that it is wrong--it just means that it does not work in every situation. Different is good. Different means that things can change and still be okay. I don't have to do what my neighbor. For example, he might mow his grass in the morning. But it is okay for me to mow it in the evening this week and the afternoon next week. The critical issue is that it gets mowed!

I've spent years chasing happiness. Amazingly it took autism to help me find it. My happiness comes from a purpose in life and my mission to make our lives as fulfilling as they can be. Without autism I would still believe that happiness comes from a wooden box filled with all the latest gadgets and an attached 3 car garage. Instead, the joy on the faces of my children or the smell of their freshly washed hair during our cuddle time is all I need. Without autism I probably wouldn't be taking the time to even notice these simple events. Yes, I know that they will grow up. I am happy to grow up with them. We are learning this happiness thing together.

Autism has taught me that life does not just happen. We all have choices to make. We all encounter mountains to climb. If I continued to believe that it was okay to let others make the choices for my family than I would be letting myself and my children down. Until my children have a voice to speak for themselves it is my job to be their champion. The decision makers of the world don't have my child's needs in mind. They answer to the masses. Unfortunately, we are not the masses. We are different. Our special circumstances have made me realize that I have to use my voice and speak out.

This can be rather trying in a society where a single voice is rarely heard.

This can be rather frustrating when that single voice has to say things that don't follow the status quo.

This has been amazing for me because I have never been that person to buck the system. I usually just sat back and watched. Well,I can no longer be that person. I am learning to speak up and talk loud. I have no doubt that there will be times when I have to talk so much that my voice gives out. But I also know that I have a wonderful husband to fill in until I get my voice back.

Advocacy - remembering what is important

My life feels like it is on pause lately. I have so many irons in the fire that I am not sure if I am coming or going. It seems that I am going to support group meetings or committee meetings atleast twice a week. It really has gotten out of hand. Fortunately, a few of my affiliations are coming to a close now that JP is entering the school age population.

I am ready to cut back...but I fear that I may have put my hat into too many rings!

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For example, one organization is a council made up of school, health and human service agencies and families. I was invited to sit on the committee as a voice for autism parents in our region. Although this has been interesting, I am not sure it has been very productive.

The only measurable success (from my narrow perspective) has come from our starting a parent network for all Early Intervention (birth to age five) parents in our school district. We wanted a way where our families could meet and get to know each other. We wanted to help end that isolated feeling we all have.

Initially, the Special Ed God in our district shut us down but we tweaked the plan and finally got her to allow it. But since it was "school affiliated" it had to be educationally based and NOT A SUPPORT GROUP. (i.e. they didn't want to create an environment where us families could get together and compare services). I guess I can understand their concerns.

Several people have put their blood sweat and tears into this group yet the participation has been rather dismal. Truthfully, the structure of the group (all disabilities) just makes it virtually impossible to meet the "educational" needs of such a diverse population. Still a lot of work has gone into the family network and I really hope it continues next year. Unfortunately, this years performance has put that future into question. It still has a few champions so I am confident they will give it atleast one more year.

One successful advocacy tool to come from the parent network is a Yahoo group designed for all parents of special education families in our school district. It was started by an anonymous individual (wink wink). It was a big "no no" according to the "Special Ed God" but we did it anyway. It is a separate entity from the network so it has absolutely no affiliation with the schools. Frankly, discussion is tamed because many of the families still worry that the school can see what they say. Ultimately, this has proven to be our "support group".

Ultimately, I have managed to meet 10 autism families with kids between 3 and 6 years of age. So in December we started our own support group and actually met at my house the first couple of meetings. We are now up and running and rotating between the member's homes. It has been awesome! It is helpful to talk to other families that are facing many of the same issues.

Part of the problems is that we live in a large metro area but our school district is broken out from the metro area. So we can go to metro autism events but it is rare to find a family from our specific district. The truly frustrating part is that I have found about 4 families with older autistic children who were in our district. The key word is "were". They have all opted out. This scares me. But so far things are going well for us with our district.

Interestingly, I've heard rumblings that the school folk aren't so fond of us autism parents getting together. We have one family that is raising hell and I giggle thinking that the school might blame our group. Truthfully, this family was going all on their own. Most of the rest of us are just watching them in awe. Sadly, that family might be moving away. We'll see. I was looking forward to having them around to cause waves!

I've also heard that I got the credit for the group coming together. Oh well. The sad reality is that we came together because as new families asked about what they could do at home to supplement the district resources--they were pointed toward me. There is little resources in the community to help them get started and no one in the school was willing to get them up and running with a structured home program. Ultimately, the families are told about "another family in the district who had success with a Verbal Behavior Program" (i.e. us) and given my email. Eventually it got tiring going over the entire song and dance every time a new family was diagnosed so we just decided to pool our resources and start a support group. We are meeting once a month and helping each other cope with life's ups and downs. (Does anyone else find it sad that so much of the time it feels like the blind leading the blind?)

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Well, back to the parent network. Initially it was discussed as being for all ages. However, the council we were working with was only birth to five so we started there. Another mom and I decided that we would run with it for school aged families as well. (I should explain that we are removed from the (birth to five) council when our kids enter school. Her son was in Kindergarten this year and as you know mine will be there next year.)

So we applied for a grant to expand this program to the older population. We needed the grant so that we could have the funds to bring in good speakers. We knew we had to make the topics narrower in order to make this group more successful. After all, it would be impossible to find a topic every month that would interest the entire special ed population. We considered it to be a success if we could present a couple topics to include each family. We worked our butts off getting the grant written up.

But I have had an uneasy feeling from the beginning. Special Education just doesn't seem to be a a priority. Our district has the reputation for being one of the best academically in the metro and people move here for the schools. But let's face it, our kids don't quite fit into that mold. Plus the mediocre success of the birth to five program didn't prove to be very good advertising. My gut was right, we received word today that our grant did not receive approval.

This might be a blessing. It was going to be a hell of a lot of work. My partner in crime and I just talked this evening and she is still committed to moving forward. (I was ready to walk from it out of exhaustion.) But she is right and this might actually will be better now that we don't have any school affiliation. We are now free to make it a support group. We are going to try and find a room in a church or library where we can meet without a room rental and just start up small. Perhaps the school did us a favor by shutting us out as now it doesn't have to be 100% educationally based and us families will have a chance to network and advocate!

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In our state, services simply suck. There is little information out there for families and there are few private providers knowledgeable about autism. Ultimately, we have one autism body to represent the parents and it is affiliated with the Autism Society of America. Of course that is not why we suck but it explains why there is virtually one think tank in the state--Behavioral. I find it really silly that all we hear about is ABA yet there are virtually no ABA services in our state. (In fact, I've heard a few horror stories about special education teachers not even knowing how to do a discrete trial! But I need to be fair and say that there are also some very competent teachers out there too. For example, our current teachers are amazing!)

So anyway, another parent at a support group I attend is on the board for the Autism Society of (*My Mystery State) . They have a couple of vacancies and she asked if I would be interested in running. At first I freaked and said no. I felt like I was a geeky freshman being asked to be on the student council with all the rich older kids. I wasn't sure I'd belong there. Then I thought about it and decided that I have no right to bitch about the services unless I am out there trying to make them better.

Needless to say, I am a little nervous about joining up. This organization is as mainstream as they come in my conservative state. In fact, I know there has been a lot of political debate among the members because at the annual state conference this group refuses to allow any biomedical topics. As usual the two autism camps do not play nice. And here in one of the most conservative regions of the US, you are considered a circus freak show if you go so far as to mention homeschooling or even a glutein/casein free diet. In fact, I wouldn't be surprised if most of my neighbors account for President Bush's 38 percent following.

So I am going to the board meeting this weekend to put in my name up for candidacy. Of course, once I get there I can change my mind. Maybe I shouldn't do this. It might be more politics and work that I want to take on. Atleast my friend will still be on the board and we will be in it together. We'll see...

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A couple of weeks ago I started perseverating on JP's summer plans. His principal at the school he will likely go next year had mentioned a summer school program for incoming Kindergartners. But I am also planning to send him to a local Recreational Therapy camp. So I followed up with the principal to see if I could get the dates for their program. That is when she told me they did not get their grant. Bummer!

Then today she emailed me to let me know that they did get their grant after all. That is really great news because now JP will be able to attend a program at this new school with some of his actual peers for next year! This will be huge for getting him adjusted to his new environment! (As an interesting side note... it is very likely the same organization that turned down the grant request for the special education parent network that I mentioned above. Oh well...it is still a positive event for my son.)

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Several weeks ago I applied on behalf of our metro area autism support group for DVDs of the complete presentations from National Autism Association 2005 National Autism Conference. The conference consisted of 40 presentations from renowned autism experts in fields ranging from cutting-edge scientific research to getting the most out of Individualized Education Plans. It covered behavioral as well as biomedical issues!

I got word today that we were selected to receive the free information! Now I know that much of this information dates back a couple of years but when much of the state has no informational resources this will be awesome for so many of the parents! Not only will our local group have access to it but we will be planning to share it statewide! I am very excited about the possibilities!

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So I have droned on and on about all these organizations and my activities. Ultimately, today was a big day. I feel like the pause button got switched off and the movie of my life is finally moving forward. I now know what projects lie in front of me. I know where to focus my energy. I just hope it continues to play at the regular speed and not fast forward!

Yes, there were ups and downs. One grant approval means more (free) summer services for JP. One grant rejection may mean less work for Mom (but continued isolation for our district's special ed families). One approval (for the DVDs of the NAA confererence) means more work for Mom but that work will be exciting and hopefully educational! I am just so relieved to finally to have a direction regarding all of these issues.

Now I just have to make it through our Re-Verification/IEP/Kindergarten placement meeting that is scheduled on the 26th. After all, the future of the little man that we are discussing there is the only reason I am getting all caught up in this advocacy stuff. His future has to be my priority!!!!

Please help me keep all of that in focus!!!!

Our study of emotions

We've spent a lot of time the past few weeks working on our "Emotion books". These are books made out of colored paper were we try to sketch stories to help illustrate our emotions. This process is quite painful because mom is quite possibly the worst artist in the world and because JP hates to write or draw. This project has two goals: JP learning to identify and understand his range of emotions and hopefully an appreciation for drawing pictures.

Although JP is getting better at identifying that a person in a picture is happy, sad, angry, confused he still only can articulate his emotions in a black or white context. In fact, 90% of the time he will tell you that "JP is happy" even when he clearly looks frustrated by something. Recently he has managed to articulate that he is angry when we were trying to talk about the events after a meltdown. But he doesn't articulate sad or mad or proud or confused or scared and he doesn't share those feelings before they get out of control. My thoughts are that he has to learn to identify these feelings in himself before we can expect him to regulate them.

So we started out with a "Happy Book" and a "Sad Book". We have since added mad, excited, scared, surprised, confused and proud. I think they are helping and JP really does seem to enjoy creating and re-reading these books.

We were drawing in our new "Proud Book" about our accomplishment of drawing a picture of Pooh Bear when JP surprised Mom.

JP: Can you write a surprise book?

Mom: (a very surprised Mom ran to get another bundle of colored paper to quickly form a "Surprised Book" since we didn't already have a book for this emotion)

JP: JP will be surprised when I see a Pooh CD for my computer!

Mom: (poised with pen to draw his story about surprise). Oh. But you don't have a Pooh game for your computer.

JP: (Grins and knowingly looks at Mom). Walmart has one!

Mom: Uh, I don't know. I've never seen one there. Have you?

JP: (Perplexed look-after all you can get everything at Walmart!) Or the north pole has one? JP would be surprised to play Winnie the Pooh on my computer! Can we do that! That is the idea, right!

I think I have been had. So far we've avoided a trip to Walmart!

Making words on the computer

We are on break from school this week. We just finished breakfast and are discussing what to do today. JP has informed me that we need to make words on the computer. So I play along and pull up Microsoft Word to transcribe what he says. But it turns out that this is not right.

"We gotta get right. We gotta get new one with all things on it. You can’t make words with that on it. But you can’t!"

Okay, reality hits. He wants Blogger.

"We gotta do questions on it."

Ah ha! He wants to do what we do with our Time Capsule questions. We just did them last Friday so it is fresh in his mind. So I pull up blogger and ask him what I should write.

"Hey, I'm Winnie the Pooh. Let's start with a song. I'll sing hum de dum dum hum de dum dum just like I climb the honey tree. That is the idea. "

Okay... (and he proceeds to sing and act out the scene of Pooh climbing the tree for his honey.) As a footnote, he is wearing his Winnie the Pooh Halloween costume from last year. He has been asking about it for a week now. I had it washed and hanging in the closet with all the garage sale items. I just kept playing dumb and telling him that I didn't know where it was. Well, last night he came into the spare room where I was working on the garage sale stuff and found it. Bummer! So he wore it all last night and then this morning he told me that he only needed two clothes to get dressed. It turns out that he only needs underwear and a shirt. No pants. Pants don't fit under his pooh costume. So it looks like Pooh, T (Piglet) and me (Christopher Robin) are in for a fun day!

So what words shall we put on the computer? I ask to lure him back from the Hundred Acre Wood.

Yes!

Can you tell me about JP?

Well, okay. Next we will start the movies. You tell me about the movies. Can you talk about the movie.

(one of my first time capsule questions is what is your favorite movie?) What movie? I ask as I play dumb.

The Many Adventures of Winnie the Pooh.

Oh, yeah. That was your favorite one wasn't it. What is your second favorite movie?

Winnie the Pooh and the Honey Tree.

Do you like any movies that Pooh is not in?

But Pooh flies in the honey tree and looks for his honey pots.

Yes, but tell me a movie that JP likes that Pooh is not in.

(long silence) Does Pooh climb this honey tree? He climbs the honey tree and he hums. Pooh climbs and climbs and climbs but as Pooh climbs he hums a liittle hum. (fake sneeze)

So JP tell me what are you and Mommy and T going to do today?

We are hanging out.

Thats right. What kind of things are we going to do?

I don't know.

Should we play on the computer? Yes. oh bother! Should we read books? Oh, yes! Should we do puzzles? I don't think so. We have somethings we have to do. Should we color? I don't think so. We can't try. How about movies. Hum. How about we start with the Many Adventures of Winnie the Pooh.

So JP can you tell me what your favorite animal is? But Mommy, I found a balloon. It's green. The balloon is green. Does it blow up. I don't know. But it does. I'll fly it when it is not tied.

(he sticks the balloon in my mouth but I ignore it and proceed with our questions)

JP, tell me your favorite animal. I like some cows. Cows! Cool. So what do you suppose a cow eats? He eats grass. Yes! You are such a smart cookie. (fake sneeze) Yes.

What is your favorite tv show? Many Adventures... No I mean a TV show. I mean like on Playhouse Disney. Johnny and the Sprites. Oh really! That is a cool show. (fake sneeze)

So JP, what is your favorite book? I read the book about Pooh gets stuck. Do you read any Dr Seuss books. Oh yeah. I like the Cat in the Hat. Cool. Any others? That Cat in the Hat Comes Back. Do you like Green Eggs and Ham? Yeah. Do you like that one with the Grinch? Yes. What one is that? That was the story. The story of what? Of how the Grinch steal Christmas. Oh wow! You are right! I like that one!

JP, do you like writing? Yes, I like writing Lightning McQueen. No, I mean writing as in writing your letters. No I think we need to do riding.

Shall we do more questions? I think I have things to do. (and he is gone!)

I follow telling myself that perhaps it is time to ban Winnie the Pooh for awhile. We need to balance out our lives again!