He's also an artist

J drew some pictures. They're Neopets. I don't know the names of them but they're two of J's favorites because the resemble bats. J loves bats. The bottom one is a dinosaur J made up and drew. He loves those too.

*waves* I'm here, just not back like I want to be.

The surgery went fine. I was back home by 2:00. Little over an hour later Y came home, with J following around 4:00. I was very happy to see them and very glad to be home.

While the surgery went well my recovery is going much slower than I would like. I can walk but I limp everywhere. And I can't bend my knee too well. I've spent a lot of time on the couch with an ice pac. And I'm bored and want to do something but really can't. I hate sitting still. But I'm not going to try anything until my knee is doing better.

Y & J have been great! Y took over laundry duties for me, and loves doing it. J has been amazing. He's constantly checking to see how I'm doing and asking if I need anything. He keeps switching out ice pacs for me and gets upset if I'm off the couch. It's actually rather sweet.

I hoping to be able to go somewhere, drive hopefully, by Saturday. Y & J want to see Horton Hears a Who. I'll have to see how that goes. For very personal and private reasons I'm not a fan of Dr. Seuss. But if I can drive I'll suck it up and treat the kids to the movie. They'll deserve it.

And I have to brag. Watching my kids this past week and how helpful they've been I feel like I have two of the best in the world.

Gone for the week

My knee surgery is Wednesday. It's only a minor procedure and it's same day surgery so I'll be in and out. However, it's having an impact on the family here. Nothing too serious but both kids are getting agitated as the day gets closer. So it's going to be a lot of family time, before and after the surgery. I'm asking everybody to keep positive thoughts for Y & J. They're going to be in school that day and really don't want to be. I keep telling them it's going to be all right, but even I'm nervous. I've never had surgery before.

I'll check back in as soon as I can, and catch up on blogs.

One of those dark days

Today has not been a good day. My stomach, head and heart hurt from the train wreck that is the mito/autism-vaccine mess. Then I see over on Autism Vox that Ms McCarthy is asking for an "immediate resignation" of Julie Gebering, director of the CDC. Good god, woman, shut up! Can we collectively ask for your "immediate resignation" as mouthpiece for the autism community. You seem to think, with your PhD. from Google University, that you have enough credentials that you can speak on behalf of the whole lot of us. Well, I'm pretty sure there are those of us who feel otherwise and we'd like to see you step down from your post. So how about a trade, Julie Gebering resign and you do too? ...Didn't think so. Like I already said, shut up, woman!

Then J and I were verbally assaulted by a woman in the grocery store parking lot because she didn't like my bumper stickers. I have two: "My son is autistic & awesome!" and "My kid isn't "broken", He doesn't need to be "fixed". Accept Autism" She said some rather unpleasant things, right in front of J, acting like he wasn't even there. I was so mad at her lack of tact that I wanted to punch her. I gave her a piece of my mind, and J got in some words too. "Shut up, you stupid lady! I'm autistic, and it's okay." He then told her to go away and get hit by a car. I was a bit stunned by his last remark, but also tried not to laugh at it. This nosy-body was stunned too. She just gawked at him then quickly walked to her car, which was two down the row from mine. J has no qualms about telling people he's autistic and he has no problem with it. He's hardly ever forceful about it. But today was the first time he told somebody to shut up and to get it by a car. I guess he was pretty mad to do that.

This was the first time I've ever been verbally attacked like that. Even though J acted like a knight in shining armor and was proud of himself for standing up for himself, it felt like I had been punched in the gut. First, because this woman said some horrible things in front of J. Like if I really loved him I'd do everything I could to "fix" him because there's no way he's happy having autism. Yes she said something like this in front of my son. My wonder autistic son. Second, I hate how the overwhelming and what society takes as the common, popular and accepted opinion is that autism is something that needs to be gotten rid of; that it destroys families and lives. That anyone who doesn't agree with this ideal is viewed as some kind of pariah. I hate it! I absolutely hate it! So, even though we had a small victory today it barely makes a dent in the bigger picture of things.

I have no doubts J knew what happened today bothered me. He's been at my side ever since we got back home. (Y is dog-sitting for my brother at his house this weekend.) We watched Revenge of the Sith, since we're both getting excited for the new Star Wars: Clone Wars movie and cartoon coming out this summer and fall. Had pizza for dinner and then watched "How The Earth Was Made" on History, formerly The History Channel. He's in bed now and I'm going to try and keep my mind on other things now that I've written about this...like working on writing my review and thoughts on Jumper. I was hoping to have it done and posted by now.

Edit 8:25 a.m. 3/9/08: And now that I've slept on it I'm wondering how much J was affected by what happened yesterday. I was so focused on my own hurt that I immediately assumed J was reacting to it. Not until this morning, as I watch him play with his Bionicles, do I wonder how he feels about what happened. I want to smack myself for that. Never before has J reacted way he did. Like I mention above, he's not forceful but he will tell people he doesn't mind one bit being autistic. But, never before has he encountered someone who was so rude and thoughtless. I can only imagine how he must have felt having this woman come up to us and say the awful things she did. And say them as if he wasn't standing right in front of her. Watching J play with his Bionicles I'm instantly reminded how doing so helps him deal with stress or when he's under distress. Now that I'm not thinking solely on my feelings about yesterday I wonder how much stress he was under last night and just needed me at his side. We were pretty much glued at the hip from when we got home to when he went to bed. There were a lot of hugs and "I love you" last night, to each other. I have to remember to think about how things like this will affect J. I was hurting; I'm sure he was too, especially since he was the one the rude comments were indirectly directed to. We've both only been up less than an hour but J's mood seems to be okay. I'll see how he's doing after breakfast and decide if what happened yesterday is something we need to talk about, or if it's something he wants to talk about.

I do have one highlight. J made another video today. "The Crystal Heist" starring his Neopets. Enjoy. (And dang! This thing did not want to cooperate!)

J out buddying around

For several months now I've been trying to get a mentor for J. While he has his uncle and grandfather as role models and guys to do things with they're not available as much as I'd like them to be. And, to be quite frank and honest, J needs more male figures in his life. Seriously! His father isn't around. Can we say Deadbeat Dad. And almost everybody he interacts with is female. So, he needs male role models.

I've been working with an agency that matches up disabled kids with mentors and helps them develop social skills. I specified a male, J needs a male. One was matched up and did pretty good with J. Unfortunately, his schedule was too busy that he had to transfer J to somebody else. The transfer never happened. In fact, the previous mentor just completely up and disappeared on us, leaving J hanging and me upset. It took a few phone calls to the agency I'm working with and then playing phone tag with the new guy before things finally connected. But they did.

Alex, who's the new mentor, came out here last week to meet J and spend some time with him. I also had to fill out paperwork.

J loved him. He thought he was great and couldn't wait until they began doing things together.

They began yesterday - Thursday. Alex came over about 4:30 and hung out with J in the basement. J showed him his Bionicles and gave Alex a quick lesson on them. They then talked about what J liked to do. The next thing I know J is asking me if Alex can bring him to Toys R Us. I said sure, that was fine. Alex asked me about buying him something and I told him that what we usually do is go and look around and create a list of the things he really wants. Then we discuss which one he wants the most and what he can do to earn it. Alex was fine with this.

So, the two of them were off for an evening excursion, and I was so happy to see him go. J was thrilled about it too.

He's had PCAs in the past, all male, before it became my full-time job. J always enjoyed the time he spent with them. However, when PCAing became my job the available hours for additional staffing were almost nonexistent. And I couldn't find anybody who wanted to work maybe six hours a week when it was almost twenty hours a week before. So, he went without a PCA, or continuous positive male role model for a long time.

That finally changed. I almost cried last evening when J left with Alex. The pure excitement and joy in his eyes to have a guy to buddy around with again really got to me.

Alex brought J back a couple of hours later and J showed me the list he came up with of all the things he wants. I also found out they went to Petco as well as Toys R Us because he had animals as well toys on this list. Alex and I didn't get much of a chance to discuss the list but I have a feeling Alex is going to work with J to earn one of the toys.

After Alex left J talked for almost half-an-hour about him, how cool he was, how much he liked him, and about where they went and the fun they had. This is something J doesn't normally do. He'll wait a few days, processing everything, then talk about it. Not yesterday. The fact that he was talking about Alex almost immediately after he left tells me what a great match these two are going to be.

And they will. Alex in in his early twenties; he listens to a lot of the same music that J does, likes similar things, and wears some of the same clothing brands J does. J pointed this out to me. And to J, having someone he can identify with is important.

Alex will be seeing J every Thursday evening, and then more once school is out. This looks to be the start of a great friendship, and I couldn't be happier for J.

Therapy, Evaluations & Diagnoses

Yesterday was our first family session with J's therapist. It was interesting. The main topic was Y & J discussing how they deal with each other and some new strategies they can use, as well as encouragement for the ones they're using now.

Dr. M was very impressed and pleased by Y's positive attitude about J's autism. I always seem to get that whenever it's brought up that Y has always been that way. She loves J, thinks he's awesome, brags about him, is very protective of him, very accepting of him and wants him to succeed at whatever he sets his mind to. From what I keep hearing that attitude from the sibling of an autistic child is rare. I've been told that a large percentage of siblings have problems and issues with their autistic brother or sister. And, unfortunately, I have encountered a couple of kids who do have an issue with their autistic sibling, but it's hard to believe it's as widespread as I keep being told. Y has never had a problem or issues. She's loved J unconditionally ever since he was born. As she said to Dr. M why would she have a problem? She loves her brother. This is the only way of life she's ever known and wants to know. She doesn't know anything else and can't imagine it any other way. Then she asked why would she want to? And why would she hate her brother?

If this attitude is indeed rare amongst siblings of autistic kids then I'm very blessed to have such a wonderful daughter. And J is very blessed to have such a wonderful sister.

The session went pretty well. Y doesn't like J's therapist, though. She can't explain why but she doesn't like him. That's fine, she doesn't have to. J is the one who sees him on a regular basis, and he thinks Dr. M rocks. One thing I can say is that Y's therapist's style is very different from Dr. M. This could very easily be why she doesn't like him.

At the end of the session Dr. M asked me if Y had ever been evaluated for sensory problems or even asperger's. I told him she had a full neurological evaluation and that was when she was given the complete diagnosis of ADHD and clinical depression. He's convinced there's something more. He told me by watching her she appears to be someone who has some sensory problems. She is easily distracted by the littlest things which always pulls her off task. This was very apparent in the session. And it's hard for her to focus and concentrate. I've always equated it to the ADHD which is also effected by the depression but Dr. M thinks it's more than that. He's suggested I get her evaluated.

I'm going to look into it. I've been down this avenue before, with J, and I'm trying to remember who all I talked to and worked with. I have to do some research again to figure out who to talk to and where to get her evaluated. I have the same attitude with her as I have with J. If there's some kind of diagnosis there let me find it so I can make sure my kids get the best services and help possible to help them succeed.

The biggest problem is going to be Y. It took her a long time to come to terms with her diagnoses and there were several months that she hated having them. They made her feel stupid at first; she feels better about them now. And this is something she's been working on in therapy. I find it interesting because she talks about how awesome J is - autism and all, yet she doesn't like the idea of having a disability herself. I've told her she could learn a thing or two from J is regards to accepting yourself for how you are. She's knows I'm right and tries to follow J's example. But then Y has always been hard on herself, even when it's not necessary to be. Add to that she's a teenage girl trying to figure out who she is. All this combined is one big stress mess for her.

Now there's one thing Dr. M keeps keeps insisting on and it was brought again today: that J is not autistic, that he has asperger's. His reasoning is that, according to him, J has such a high level of speech that he cannot be just autistic. He has to have aspergers. I don't agree with this.

When J had his evaluation it was done at The Fraser Center in Minneapolis. It's considered the best autism clinic in the Twin Cities. When I sat with the psychologists who evaluated J they discussed with me that fact that he has the diagnosis of autism but is one social skill deviation away from having aspergers. It was this one deviation that placed him on the spectrum as autistic, "High-Functioning Autistic" as the doctors put it. From what I was told aspergers kids have a much easier time with speech and communication than auties. They have a much easier time getting their words out. This was where J had difficulty and where the deviation occurred which placed him just outside of having aspergers. Well, Dr. M doesn't agree with this. He's very convinced J has aspergers despite what the evaluation says.

Now Dr. M could be right. J could have grown into the diagnosis of aspergers but I'm not going to declare him as such until I get another evaluation and official diagnosis. Which means J needs a new evaluation. Dr. M has suggested J get this. I plan on it because J has progressed so much in the past year-and-a-half that I really wouldn't be surprised if I see some kind of change in his diagnosis (but right now I'm sticking with autism). I know his speech skills have improved so much over the past year-and-a-half. Goes to show how devoted and dedicated speech therapists can really help.

This autie/aspie debate has been ongoing with Dr. M and I since he first started seeing J but it's never been a problem. I stand by what The Fraser Center diagnosed; he thinks it's wrong. In due time we'll find out. The only problem is that The Fraser Center has about a year long waiting list! So I have to go somewhere else. I have a short list but I really want to get him back into Fraser. I'm thinking of getting on the list and getting him in somewhere in the meantime.

Either way, new evaluations are in the future, for both my kids.

Shopping the easy way

I said I was going to blog about J's day shopping when I was feeling better.

It was President's Day and he and I had plans to shop at the mall while Y was there running around with her friends. He had a list of the stores he wanted to go into and the clothes he wanted from each one. He also decided where we were going to eat.

I blogged earlier about how he reacts to the various noise at the mall, and to the music played in the stores and restaurants. He can handle the constant din of voices in the mall and the loud roar in the food court - much better that me I must say - but he can't handle the music played in stores or the roar of voices in restaurants. It's because the noise in the mall and food court bugs him a little bit but not as much because it's all over the place and spreads out and travels. The noise - and music - in the restaurants and stores is in one small enclosed spot and he doesn't like it.

It's because of this that I bring ear plugs for him because some of the stores he loves to go into plays very loud music. Like I mentioned in the earlier post, he'll usually go in and out of the store several times looking at stuff he wants and then getting away from the loud music. It "hurts"him, as he's told me. It makes his body and head pound inside and he didn't like it. The ear plugs make this tolerable for him and he's able to shop.

So we went to the mall with the list of stores and clothes to buy in hand.

First stop: PacSun where he got a real cool striped hoodie.
Second stop: Zumiez where he got three different t-shirts.
Third Stop: Sears where he got two pairs of jeans.

We got all this done in under an hour. Talk about quick shopping! He knew exactly what he wanted and didn't want to look around other stores when we were done. Now, I like to shop and look around, but I didn't mind one bit the in and out shopping that we did. That's how J is and that's fine with me. It's not as easy when all three of us are shopping. We always have a list of stores to go into and what we're looking for, but Y and I have a tendency to want to look in all these other shops too. Sometimes J is okay with it if he hasn't begun having sensory overload yet, but most times he's flat-out against it and we have to plan another trip.

He did what I knew he would do - go in and out of PacSun and Zumiez several times while finding what he wanted. The sales people in PacSun kind of looked at him funny for this but didn't say anything. Of course they were happy when I bought something.

The people over at Zumiez were great. We're in there enough since both my kids shop there that they know our faces. They also know J is autistic. I don't know how since none of us have said anything, but they know. Whenever J has to step out of the store, if he's looking at a shirt or something, one of the sales people will bring the item to the register and hold it there until J comes back in. And there's one salesman who's fantastic with J. He helps J out all the time if he's working. All the other people do and are great but this one in particular just knows and has helped J out when the music gets to be too much. It makes our time in Zumiez go so smoothly, and we love shopping there.

After that we went to the food court and had Subway sandwiches. A short time later we met up with Y and her friends and I brought everybody home.

It was a good day and we got a lot done. And J was very happy with the clothes he got.

Ode to ciabatta bread

Sounds strange, I know.

Finding foods J will eat has always been somewhat of a challenge. He eats a variety of things, yet he has very definite tastes, likes and dislikes.

He loves bread. One of his favorite things to eat is buttered toast - with the crusts cut off. I remember growing up I didn't like crusts on bread and I always pulled it off. J is no different there. I have to cut the crusts off every piece of bread he has: toast, sandwiches. But it goes further than that. He wants the crust off of every type of bread he has. French bread, dinner rolls, french toast. The french toast is like with sandwiches and french bread is easy for me to cut the crust off. However, the dinner rolls aren't as easy. I have to either hollow the roll out and give him the inner part or peel off the crust. It all depends on what kind of roll it is. This makes mealtime interesting and sometimes difficult. If I don't hollow out enough of a roll or get every part of the crust J gets upset about it.

The only breads he doesn't want the crusts off of are hot dog and hamburger buns. Why, I don't know.

I'm always looking for different breads to try; something J will eat.

The other night I had a loaf of ciabatta bread that I decided to use for dinner which was turkry and bacon sandwiches, one of J's favorites things to eat.

I was all set to cut the crusts off of J's pieces when he stopped me. He just shook his head, picked up his sandwich and took a bite. A big bite, crust and all. He then took another bite. The next thing I know half the sandwich is gone. And not once did he complain about the crust or ask me to cut it off.

Y noticed this too and remarked how he was eating the crust on his bread. He looked at her and simply said, "I like it."

This was the first time J has ever said he's liked a crust on his bread. I asked, "You do?" and he nodded.

He then said it tastes good and that it was soft. I didn't find the crust all that soft but J did, and I agree, the crust had a good flavor to it. He finished his sandwich and then asked if he could have some buttered pieces. I got out the butter, he put it on two pieces and promptly ate them - crust and all. He then tells Y and I how the inside feels like soft, squishy bubbles in his mouth and that he likes it.

I'm thinking how great it is he likes the bread. And like it he does. He's had several more pieces since - bread and crust. In fact, he finished off the loaf today and asked me to buy more. I told him I would tomorrow.

Knowing I've had to remove crusts or hollow out dinner rolls all these years I think it's great J has found a bread he likes eating the crust on. Maybe not that big of a deal to some but it's an interesting turn of events here. It's all in the flavor of it. He told me today all the other bread crusts have no flavor so that's why he doesn't like them, along with him thinking they're too hard.

The ciabatta bread crust is "real good", in his words.

So I'll be stocking up on ciabatta bread here.

And the visuals went out the window.

The kids are off of school next Monday and Tuesday for conferences. Y is going to be at a friend's house the entire time. That leaves it just J and I. He's absolutely thrilled about it. He gets me all to himself for four days. He loves these mother/son days. I wish he had father/son days but that's an ugly issue all onto itself.

We were out and about all evening, until around 9:00. Here was our evening itinerary (sp?):

-go with Y to her therapy.
-drop Y of at her friend's house.
-go to Toys "R" Us to look at Imaginext, Bionicles, dinosaur, and Star Wars toys.
-go to Perkins for dinner.
-go to Home Depot to buy a storm door, paint for the basement, energy saving light bulbs, and new thermostat.
-go to Petsmart to look at the animals (and see a gorgeous black cat I wanted to bring home with me so badly! We're only allowed two pets in the townhomes we live in so I couldn't do it. *cries*)
-go to Target to buy a new heater for the basement. It's always cold down there.
-go to Walgreen's to get J's prescriptions.
-go home.

That's a lot of running around going different places. It also means a lot of transitions for J and the potential for overload and a meltdown. With an evening this full I'd have a social story ready to read before we left and he'd have his "travel" book handy and ready to set up for the duration. This is a book full of visuals cues for when we go places. And normally I wouldn't have a list of errands this long and full. It would be divided into a two or three day process.

Well, tonight we got it all done and I can to say it was accomplished with hardly any problems. J got a little impatient in Perkins waiting for our food and did some stimming in Home Depot and again in Target. But beyond that he was great! He was able to go through a very full and busy evening and keep it together.

Here's the clincher. He did it without the social story or his "travel" book!

Y was running behind, as usual, and knowing she had to be a therapy by 4:00 both J and I were on her case to get her butt in gear. So we both forgot about the social story and J forgot his "travel" book on the couch.

I realized it when we were at Y's therapy and was going to run home and get it. J looked at me and said, "Mom, I don't need it."

I looked at him like, "Are you crazy? You always use it when we go somewhere."

He said, "I don't. Just tell me where we're going to go."

So I did, slowly and carefully naming off each place. I watched J and could almost see him processing and filing away the information in his head, setting up a schedule.

He then asked, "Can we go to Toys "R" Us before Perkins?"

I originally said no but he had asked so nicely that I said yes. This made him very happy.

So we went on with the evening schedule and proceeded in the order above. Petsmart shares a parking lot with Home Depot and J asked if we could go in there after buying the stuff we need for the house. Again, I told him yes. And again he was very happy.

We then went inside Walgreen's and he stayed in the toy aisle while I got his prescriptions. Then we went home and had a relaxing rest of the evening.

I was so impressed by how well the evening went and how well J behaved and kept himself under control. Looking back I can see why it went so well. We took various turns doing things that he wanted to do and things I wanted or needed to do.

-go to Toys "R" Us to look at Imaginext, Bionicles, dinosaur, and Star Wars toys. J wanted to do.
-go to Perkins for dinner. I wanted to do.
-go to Home Depot to buy a storm door, paint for the basement, energy saving light bulbs, and new thermostat. I needed to do.
-go to Petsmart to look at the animals J wanted to do.
-go to Target to buy a new heater for the basement. It's always cold down there. I needed to do.
-go to Walgreen's to get J's prescriptions. J wanted to go to the toy aisle.

After I had done my errand we went to a place he wanted to go. While there he was able to relax and enjoy himself and regroup. He was looking at things he liked and I think it made the time he spent with me while I did my things easier. After each of my errands he had something to look forward to.

And while in the car he kept repeating to me the errands schedule, reminding both of us where we were going. And then adding in the extra stop when I agreed to it.

This was the first time he's ever gone without his "travel" book and he did so well. This was also the first time he was able to make it through such a full errands schedule. Dividing our time between my errands and the places he wanted to go really helped.

I plan on keeping the social stories and "travel" book around; who knows how next time is going to go. But this could be the start of something new for us.

After we got home J was playing around with my camera again. I had to post this picture he took of his stuffed meerkat. "A little too much partying in the manor," he said, referring to Meerkat Manor, one of his favorite shows. I thought it was cute.