A Day in the Life

MoA

2008-04-09T22:36:00.010-05:00

I've been meaning to write but I've been preoccupied with something lately. It's something I may post about if things continue to fall into place with it the way they have. I'll have to wait and see.

But I wanted to post about us visiting Mall of America on Saturday, April 5th. I've only been there two times in my life because I really can't stand the place. Three counting now this past Saturday. Y has been there numerous times with friends of hers, and J - never. Until Saturday. The kids have been wanting to go and I finally relented. I figure get it out of their system...for now. And J really really wanted to go. He's heard Y rave on and on about it. I was nervous about taking him because of the size and general noise of the place. I had no idea how well he was going to do there.

Like so many times before he proved to me my concerns were unfounded. He did great at MoA! Heh, he did better than me!

The mall is loud, very loud. One has to yell at the person standing next to them to be heard. And maneuvering through all the people can be tricky. It was a constant making sure Y & J were close to me. I don't even want to imagine what it would be like to get lost from your group there.

We originally printed out a map of the levels and the stores we were going to shop in. Peh. That idea quickly went out the door once we were in the mall. The place is so damned big that following a game plan didn't work. I was concerned how J would do with this since we always shop with a list and schedule. Again, he proved to me he did better than I thought he would. He had no problem not shopping with the map or a list or schedule.

We hit about half the stores we wanted to. I thought this was pretty good.

I brought J's earplugs with in case he needed them but he never once asked me for them. I was tempted to use them a few times.

Like I said, the mall was loud. Much too loud for my liking. I can say I was having sensory issues. Neither Y nor J were. Several times I asked J is he was doing all right and each time he said yes. In fact, there were a few times he said it in an annoyed voice. At one point I asked him if the noise was bothering him and he told me no.

I know J filters sounds and senses differently than I do. From what I've been told he doesn't really have a "filter system" the way I or Y do. He takes it in and somehow processes it all. I can't even begin to imagine how he does that or what it's like for him. But the fact that the level of noise at MoA didn't bother him had me surprised. Especially when he has to use earplugs at the local mall and has to constantly walk in and out a stores he likes to shop in. He didn't do any of that at MoA.

I remember casually asking him why the noise doesn't bother him because it sure bothers me and he shrugged and said, "I don't know. It just doesn't." I almost wonder if the noise was so loud and a constant that he just didn't really "hear" it? That was suggested to me by J's teacher.

After four hours on our feet we ate at The Rainforest Cafe. That was the coolest place. Every twenty minutes there's a "rainstorm" in the restaurant. We're in a rainforest so why not. We sat in what was called the Elephant Room. It had what were supposed to resemble stampeding elephants carved on one of the walls. And that section of the restaurant had a constant vibration which was supposed to be stampeding elephants in the distance. We all found this to be very relaxing.

The restaurant it's own version of Build-A-Bear Workshop and I got J a gorilla that he named Grillz. I'll post a picture of it as soon as he lets me take a picture of it. *laughs* I actually got him the gorilla within the first half hour of being at the mall. We had to reserve a time for dinner and when he noticed the BABW he just had to get one. I had agreed to do this anyway so I said okay. He carried Grillz around with him the entire day and I think having something to hold and squeeze helped him through the day. I know there were several times I saw him squeezing his gorilla real tight. If it helped him cope with the noise and any sensory issues then more power to him. He figured out his own strategy and I couldn't have been more proud. He's really beginning to come into his own and figure out what works best for him.

We also checked out Legoland and I have to say we were pretty disappointed. Sure they had cool displays made out of Legos but the location it was in was small and unimpressive.

We didn't venture near Nickelodeon Universe because well, we just didn't. We were there to shop. And besides, Y & J would rather go to Valleyfair this coming summer.

We didn't get out of the mall until 7:00. We spent six hours there. That's the longest we've ever spent in a mall. We were tired and sore by the time we got to the car.

We had a good time and I had to laugh to myself that J did better there than I did. But then he's my amazing little man.

Thursday Evening Theatre

2008-04-04T22:41:00.007-05:00

Last night was the school play Y was in. Turns out it was a combination of short performances from all the 8th grade theatre classes. It was a night of Edgar Allen Poe. There were five of them; each one around twenty minutes each. There was a fifteen minute intermission between the third and fourth performance. The one Y was in went on third and it was the longest.

The evening began at 7:00 and ended at 9:00. This was a long time for J to sit still, a very long time. But he did! He made it through the entire evening without any problem at all. No fidgeting, no whining, no need to make random noises. He never once asked me when it was going to be over. I got a lot of "When is Y going to be on?" but that was it. Other than sitting through a movie, J has never done anything like this. And according to J sitting through a movie is easy for him. He's told me the action and movement of the people in it keep him going. They keep his attention. He likes watching the characters too. I have a feeling this was the same thing with last night. Though the action wasn't the same I have a feeling the movement of the people were, as well as the idea that he was watching characters.

The only time he got up at all was during intermission. My parents and brother came to see the performances and J walked around outside with my brother for a little while. Then he came back in and sat through another hour of short plays.

I do think the night wore him out though. He was very tired and cranky when we were leaving and couldn't wait to get home. He fell asleep in the car, that's how exhausted he was. Looking back, I have to wonder if he was focusing so hard on being quiet and still, as well as working to enjoy the performances that he mentally wore himself out. I know every time I looked at him his eyes were locked on the actors on the stage. I'd see his eyes darting about taking everything in. He has such a look of concentration to him that I don't think anything would have disturbed him.

I know part of it was he was watching his big sister perform in a short play and he was very excited about this. He also saw several of her other friends that he knows too. (Interestingly enough, I realized almost all of Y's friends are theatre and art geeks. Nothing wrong with that.) When he wasn't fully focused on the plays he'd point out Y's friends every time he saw one. And all these kids get along great with him.

All in all, I think J had a great evening. An exhausting one, but still a great one.

And Y was fantastic. I think so anyways. She's my daughter and my opinion is going to be biased, but I can do that. ;p

She's taken theatre classes off and on for several years. She hasn't been in any plays because the theatre company here has a requirement of good grades to be in one of their performances. Well, her grades aren't that great. They're better than they have been in the past but not good enough to get any parts. She loves the audition process though. She learns from it.

Anyway, this was Y's first time in stage performance and I have to say I forgot I was watching my daughter act. I wasn't seeing her; I was seeing the character she was playing. Which was good, very good. I had to remind myself, "Oh yeah, that's my daughter." All those acting classes she took came in handy. She did a great job. We're both looking to next year when she has theatre again.

So the evening was great. Both kids did very well and I couldn't have been happier - except J when his head hit the pillow, cuddled up with his stuffed mandrill and fell back to sleep.

I look at my son and what do I see?

2008-04-02T11:55:00.008-05:00

Do I see an eleven year old boy struck down and taken away from me by autism? No. I see a boy very much alive and well and right by my side loving life and happy to be who he is. I see a boy full of affection and ready to give hugs at a moments notice. All he needs to do is hold open his arms and say, "Hug." And he gives the best hugs I've ever gotten. I see a boy who loves to share with me all that he's learned on animals. Sometimes he goes on with it that it gets to the point I have to give him a time limit and then stop. Or I have him record what he wants to tell me and we listen to it later.

Sure he has his struggles. He has trouble finding the words he wants to say, he has difficulty understanding and expressing his emotions and dealing with them in a manner that is appropriate and works best for him, he gets upset if his daily/weekly routine is changed, he deals with Sensory Integration Dysfunction, he lacks the social skills needed to be productive and comfortable around his peers and in society.

J has friends at school he plays with and everyone in his grade knows him. But it took him years to get to this point. And he still struggles to maintain the simplest interaction with his peers. He tries his hardest to interact with people when we're out in public. Some look at him funny while others fully engage him.

All this combined, and so much more, is my son.

I've never been the type of mother who pursues biomedical procedures. J doesn't need them and he's told me he doesn't want them. However, I have tried the gfcf diet. It did nothing for J. It's true, what works for one child doesn't work for another. But then I think the fact that 75% of our diet consists of natural and organic food made gfcf obsolete for him. I know several of the foods we eat are gluten-free but I don't think the removal of that particular item has made a difference in J. I think just the fact that we eat a healthy diet mostly free of additives, preservatives, food coloring, etc. has been good for all of us.

J is on medication. He has been since he was three years old. It's to help him with mental clarity and reduce aggression and hyperness. I was told try gfcf to help with that. Like I've said before I did; it didn't help at all. What has helped is J's growing awareness of himself and his emotions. He figures out and understands a little bit more every day. I truly believe that in time he'll be off his medications. His psychiatrist thinks so as well. Meanwhile, J's medication does not run his life or take away from him. They help him stay in control and find a balance for himself. Just like how I take medication for my depression and anxiety to help me maneuver better through a day, it's the same thing with J. I'm working on learning ways so I don't have to be on medication all my life. J is doing the same thing.

J does get therapy. He's been in speech therapy for years as well as occupational. Metronome therapy is used to help him build his coordination. He starts swim therapy soon to help him build muscle strength. He sees a child psychologist who helps him develop coping stategies for his stress. His emotions, but his therapist calls it his stress. And strategies to help him as he gets older.

Now, does J go through all this so he can be cured or recovered? No. And I'm sure biomedders would tell me I need to do more than just therapy to achieve that. That I'm not doing enough to help him. Well, I'm not trying to cure or recover my son. What I'm doing, or more specifically, what he's doing as he goes through all these therapies is to gain social and life skills so he can be successful in the future in a world he's not wired for. His goal is to be a zookeeper after all.

J doesn't need to be cured. He doesn't need to be recovered from autism. He's perfectly fine, happy and content the way he is. I've seen several videos of kids whose parents claim have recovered from autism by biomedical treatments. I'd love to have those same parents look at J and try and guess which biomed treatments he had to help him with the progress he made. I'd love to see their faces when I tell them he hasn't been through any. All he's had is Speech, OT and early education intervention. When I've watched these videos and I see kids from ages two up to eleven it's like I'm looking at J all over again. Every child in every video I've watched resembles how he was, what his behaviors were, what his development was at the same age. I don't see any differences at all. The difference I do see is that I didn't use biomedical to achieve these goals.

This in mind is why it disgusts and angers me when people make comments about how they think either myself, or other parents who think the same way I do, don't care about or love our children because we do nothing to "help" them. Excuse me, I do help my son. I help him to help himself. Because I don't do it the way of biomedders doesn't make me wrong or a bad parent. In my opinion, it makes me more accepting of how my son is because I'm not trying to change him.

True, there are parents out there who do nothing because either they don't want to because they can't handle the diagnosis yet or don't have the money to do so, or they think their child is too special that they don't need therapy or any other kind of treatment. (My mom has a friend who's a spec. ed. teacher who has a student whose family is like that.) But don't categorize the rest of us who don't follow DAN! protocol into that bunch. We do care about our kids, we do love them and want them to reach their fullest potential. We don't see the need for such extreme treatments to achieve that. What we see is the need for love, understanding, acceptance and services for our kids so that they can reach their fullest potential whatever that may be. Now and in the future.

So, today is World Autism Day. This is how I celebrated it. Remembering how wonderful my son is.

Spreading awareness our way

2008-04-02T00:32:00.008-05:00

I've been preoccupied since my surgery. Recovery has gone well. My knee has healed better than the doctor expected. I have full use of it again. During this time I've become completely submerged in Celtic faerie lore, especialy stories of the Tautha de Danaan. They're the ancient faerie race of Ireland thought of as the first inhabitants of the country before humankind arrived. I love all the stories surrounding them and I've been caught up in it all over again. That's why I haven't been around much.

But I haven't forgotten what month this is: Autism Awareness Month.

Y is doing her part to get the message out. The message we'd like to see more of.

This is the shirt we had made. It was J approved. In fact, he's getting a shirt of his own later this week. Y is wearing the shirt today. I still plan on getting some for her friends - whoever wants one. I know of three for sure. We're hoping there will be more after tomorrow. The process and shipment is fast so the shirts can be worn throughout the month. I'm late on getting this going but money has been the issue. When isn't it?

We're also thinking of making stickers to pass out at school. J will have a hand in designing that like he did the shirts if I can find a good deal on getting the stickers in bulk.

This is what we'll be doing for autism awareness month.

He's also an artist

2008-03-20T21:54:00.005-05:00

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.

2008-03-18T22:25:00.002-05:00

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

2008-03-10T15:12:00.002-05:00

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

2008-03-08T21:56:00.009-06:00

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

2008-03-07T00:43:00.003-06:00

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

2008-03-06T00:09:00.011-06:00

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

2008-03-02T23:47:00.003-06:00

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

2008-03-02T18:11:00.007-06:00

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.

2008-03-01T01:11:00.008-06:00

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.

Drive-by anonymous preaching

2008-02-29T01:33:00.009-06:00

I’m finally feeling better and have been looking through my blog, and a few others. I looked through my old posts and came across a comment that made me arch an eyebrow – the best that I could. It’s an anonymous one to this post

I originally planned on replying there but changed my mind once I began writing it. I’ve since decided to post about it and my feelings about the comment. Here's what anonymous said:

I'm sorry, but I have to say that I think you guys are crazy for being so closed minded about biomedical intervention. Do you realize that most of these DAN! doctors have Autistic children and they have recovered? Yes, our children ARE broken. I will love my child whether or not he is "fixed", but the fact is that many of our Autistic kids are indeed broken - their bodies don't function the way they should - and when you get their systems back on track, their Autistic tendencies are going away. You guys who don't believe in this need to go to a DAN! conference and REALLY educate yourself. There are risks with everything you do. You don't think there are side effects to the Prozac and Tenex my medical doctor has my child taking? I, for one, am VERY thankful for Jenny McCarthy. Yes, she is using her fame to bring attention to this subject, but beneath it all, she is a mom who loves her child and will stop at nothing to get him well, and that is all she is guilty of. Aside from the fact that Evan still has seizures, she has pretty much taken the initiative to cure her son from Autism. Why would you fault any mother for wanting the same for other mothers and their children? I, for one, am spreading the good news - there IS hope.

And here's my reply:

I look back in my posts and what do I find? Interesting anonymous how you didn't use your real name. Now, why is that?

I find it funny how you've proven the very point I made at the beginning of this post. Let me requote it to remind you.

I'm sincere when I say if parents want to try the biomedical procedures with their kids to go ahead. That's their choice, their prerogative. I don't agree with them and won't pursue them. But it's not my place to tell these parents they can't try it. Of course, some seem to think it's their place to shove these procedures in my face and tell me I absolutely have to or I must not love my son enough to not even consider it. I love my son very much, thank you. I love him enough to let him be who he is and try not to change or "fix" him. He's not broken!

And look what you did. Shove your beliefs in my face and tell me I'm - and anybody else like me - close-minded because I won't consider them. Hm, total lack of respect for differing opinion there.

You can rattle on all you want about DAN! and Ms McCarthy, it isn't going to do a thing to change my opinion. You say we need to attend a DAN! conference and be educated. I get all the education I need raising my son. He's a wonderful, lovable, caring, smart, witty, compassionate boy who's taught me patience, understanding, bravery, how to see and live in the world from a different point of view and realize that's okay - and that it's a pretty cool POV at that - and the true meaning of unconditional love.

I don't want or need to change my son. He's perfectly fine the way he is and I accept him - autism and all. There's nothing 'off track' about him and I've talked to other parents who will say the same about their child. I don't want to take away his 'autistic tendencies' as you put them in your comment. They're part of who he is and I see no reason to get rid of them. I'm very comfortable with how my son is. I don't look at him and think, "If only he were different. If only he were how I wanted him to be. Then he would fit into my world." Well, you know what, I don't think that way. I don't look at him and mourn for what could have been, I look at him and celebrate who he is now and enjoy the child he is - autism and all.

But then it's not about me. It's about my son and what he wants. I listen to him and he's told me he's autistic and nothing is going to change that. He's told me he doesn't want to be cured and doesn't need any kind of treatments. He's told me he's just fine the way he is. And that's just fine with me. You see, what my son says, wants and needs is more important than what I say, want and need. And it’s certainly more important than what some organization says since they don’t speak for my son or know what’s best for him. Only he knows that.

You want to believe these kids are broken, go right ahead. Like I said in my post that's your choice, your prerogative. But don't tell me they are because you don't speak for me. I don't believe these kids are broken. A lot of us, as you put it, don’t. In fact, how about a turnabout. Autistic kids aren't broken. They don't need to be fixed. They don't need DAN! treatments to get rid of autistic tendencies or be cured. What they need is acceptance and tolerance and understanding. You people need to listen to your children, any way you can, really listen to them – and not just listen for words - and hear what they have to say. Find out what they want, not what you want, or what you think they want. Listen to autistic adults and hear what they have to say. Educate yourself on the autistic mind and understand it.

You probably hate having that thrown in your face. Now you know how we all feel when you throw your jargon at us. You don't appreciate being told - by us no less - how to raise your child or what you think is best for him/her. Yet you'll gladly turn around and tell us what you think we should do and criticize us for not putting blind faith in procedures not medically proven or approved to help autistic children. And I don't consider testmonials proof. You’ll tell us we don’t speak for you and your children and we don’t understand them, yet you think you have a right to speak for us and our children and claim you understand them when you really have no idea. I just love the double standard here.

And let me say that I’d love to see some serious research done on these procedures to find out if they do indeed work or not.

Am I supposed to be moved by the fact the DAN! "doctors” have kids on the spectrum? Please! You say they’ve been recovered. Let me inform you, I’ve seen several videos of these “recovered” children, at different ages. They look and act exactly like my son did at those ages and now and he hasn’t had one lick of biomed! What he has had is years of therapy, a great and very supportive education system, a wonderful team of doctors working with him since he was a baby, and family and friends that love and accept him unconditionally. So I don’t buy into the whole recovered through biomed because I look at my son and know progress is made without that stuff. Now, do I think my son is recovered from autism? No. He’s still autistic and he always will be. What I think is he’s grown and developed at a pace appropriate and productive for him and with the love and support of those around him. He’s learned and is still learning coping strategies so he can maneuver in a world he’s not wired for. And he’ll continue to do this and flourish using nothing but the love and support of those around him – family, school, therapy - and his own determination.

Am I supposed to be moved by Ms McCarthy’s story? Don’t count on it. And by the way, I’m not faulting her as a mother and sharing her story. What I am faulting her for giving what I believe is false hope to parents and misleading them with wrong information. It’s been pointed out some of the mistakes she’s made regarding information in her book. Add to that the increased scare about vaccines thanks to her irresponsible words. I’ve seen the hysterical reactions of people. It isn’t pretty.

And you mention reactions to medication. How about the children who have been killed from chelation? Oh, but that’s okay, isn’t it? Again, the double standard. Yes, my son is on medication and it helps him. It doesn’t control his life, but it does help make his days more bearable. He has had no adverse reaction to what he’s on and with the strategies he’s learning it’s possible he’ll be off of them in the future.

You know, anonymous, you wasted a lot of time and energy commenting to me which made me waste a lot of time and energy too. But in the end I feel this post was worth it. I feel it’s a shining example of the total lack of respect issued forth by biomed parents for those who don’t agree with them. Sure, you weren’t nasty to me, and you can turn around and say we do the same thing to all of you; I'm sure there are some who do. But when are you going to get it, there are those of us who don’t want to change our kids or feel we have to. We don’t see them as broken and they don’t need these treatments. And we don't appreciate being condescended and preached to because we accept and love our children the way they are.

And I certainly don’t need someone commenting on my blog, anonymously I might add, making veiled suggestions that I’m not a good enough mother because I don’t pursue the DAN! protocol.

You say there’s hope. I’d like to believe so. The hope that someday people will stop trying to change autistic children and accept them for who they are.

Snarky? Yes. But I don't like drive-by anonymous preaching on my blog when I've made it clear that while I don't agree with and will never pursue biomed treatments I'm not going to criticize or try and change the minds of those who do. Pity the same courtesy can't be made to me and on my own blog.

Thank God it's Saturday!

2008-02-23T07:20:00.007-06:00

I hate it when I'm not feeling good and I know exactly why and I may have to change something in my routine that I really would rather not.

Just when I was starting to feel better my body decided to thoroughly protest on me. Nausea, severe migraines, dizziness - and it's all caused by the combination of medications I'm on. More specifically by the fact my thyroid meds have been increased and now it's in conflict with my anti-depressant/anti-anxiety medication. I was told there was a possibility there might be some kind of reaction. I didn't think it would take over two weeks for it to develop. But that's how long it took for the new dosage to build up in my body and then begin reacting to the other medication.

So yeah, I've felt absolutely horrible most of this week.

My therapist doesn't want to take me off the anti-depressant/anti-anxiety medication. It's the only one I can take that I don't get violently sick from. I don't want to go off it either. She's trying to figure out what to do and is talking to my endocrinologist.

This has affected the kids, of course. But it's affected J in a way that I feel isn't much better than the other way my health issues did previously. He's now overly worried for me and feels it's his job to take care of me. He's tried several times this week to convince me to let him stay home so he can take care of me. He's had his paras call me for him so he can talk to me to make sure I'm all right. It's very sweet he's done all this, however, he's trying to take on a huge responsibility that's not his and I feel awful about it -again.

I know part of it is that years ago my dad put in his head how he's the Man of the House and it's his job to protect his sister and I. I was furious at my dad for this. You don't put that kind of responsibility on a little boy. He's just that - a little boy. J may be 11 now but it's still not his job to take care of and protect me. That's my job to him and Y. His job is to be an 11 year old and have fun.

I'm touched that he cares so much and is concerned for me. I know how much he loves me. But I don't want him taking on more than he needs to.

Because I haven't been feeling well, I haven't commented hardly anywhere, and there have been so many things I've wanted to talk about but haven't: The AAP and their search for families who don't believe vaccines caused their child's autism, etc. J's shopping day and how great it went (before I started to feel completely awful). My review and thoughts on Jumper.

The first one I may just write up a post about my thoughts on the whole autism-vaccine issue. The other two will make some kind of showing, especially the last one because I've thought a lot about the movie since seeing it.

I'll get to these, I just don't know when. It all depends on when I'm feeling better again. Which I hope is soon.

Dealing with the Noise

2008-02-17T11:04:00.004-06:00

Tomorrow is President's Day so the kids are out of school. Y and her friends are going to the mall. J and I will be there too but we won't be with the girls. We'll be doing our own thing.

Today he and I have to figure out what stores we're going to go to and what he wants to get from each one, if we're going to eat in the food court or an enclosed restaurant and if the food court, which food stand.

I also have to make sure I put his ear plugs in my purse. The sounds at the mall bother him. What's interesting, though, is what sounds and where.

When we're in the mall proper J is fine. The constant din of people talking doesn't bother him. I wonder if he hears it like a loud white noise because that's what it sounds like to me. It begins to grate on my nerves after a while but I've never noticed it to bother J at all.

Going into stores, though, is a different situation. Some stores he can't handle because the loud music played "hurts" J, as he's told me. He once told me it makes his body and head pound inside and he didn't like it. I can understand that feeling. Some of songs I've heard blaring so luodly through the store's speakers has such a strong beat or bass line to it that it make your whole body vibrate. While annoying to me at times, it really bothers J. As a result there are a lot of stores we don't go in to. This is something we've learned through trial and error.

Then there are the store we do go in to. J has a list them. These are his favorites. Some of them play this loud music that hurts him. J still wants to go into them because he likes the clothes. That's where the ear plugs come in. Once in, they help him tolerate being in the store small amounts at at time. A lot of times he'll go in and out before he finds something he likes and I buy it. I just let him do his thing.

Once we're out of the store the ear plugs come out and go back into my purse.

When it comes to eating lunch at the mall almost every time J wants to each in the food court. Me, I'd much rather go sit down in a restaurant. There aren't many in the mall we're going to, and the ones that are there J doesn't like. He says they're too loud. Well, the food court is loud too - very loud.

This is where I always find it interesting. J much prefers the much louder din in the food court to the noise in a restaurant. And believe me, the din in the food court is something you have to shout over to be heard. I personally don't like it and hate eating in the food court. But J doesn't mind it at all.

When we've tried before to eat in one of the mall restaurants J has been fidgety and agitated and he covers his ears. We've always ended up leaving with our meals in boxes.

I've wondered why it is he can tolerate the noise in the mall and food court better than the noise - and music - in the restaurants and some of the stores. I asked him one time and he told me the noise bugs him a little bit but not as much because it's all over the place. The noise - and music - in the restaurants and stores is in one small spot and he doesn't like it.

I can understand that. He likes the open spaces where the sound travels far away. The restaurant and stores are enclosed spaces where the sound doesn't get to travel too far. This must lead to sensory overload which results in us having to leave or avoiding the place all together.

Knowing this, I think about how he maneuvers the stores he likes to go into that have the loud music - constant going in and out, with ear plugs in - and I smile. J knows his likes and dislikes and he's worked out a way to deal with them when they overlap each other.

I'll be the one using the ear plugs in the food court during lunch.

My future film maker

2008-02-16T19:43:00.004-06:00

I bought a digital camera not too long ago. And while I'm still trying to figure out how to use it, J has figured out how to make videos!

J loves Neopets and he wanted to make a video of them. He also wants put this video up on the Neopets website in the video section. He has plans to make a Bionicles video next.

So, stay tuned for more mini movies from J.

Just laying low; ready to Jump

2008-02-15T13:40:00.005-06:00

I haven't been around much. I haven't been feeling the greatest lately. It's not that I've been sick as in the way Y was. And thank god the meds finally kicked in and she's over the strep. I've been dealing with health issues of my own. I don't talk about them because, well... I just don't. But I don't like how they've affected my day to day routine.

I have hypothyroidism - and I'm on medication for it. I have clinical depression and anxiety disorder and am on medication for those, as well as see a therapist. I was recently diagnosed with mixed sleep apnea. I get fitted for a cpap mask next Friday night. I'll have to wear it every night for the rest of my life.

I have a lot of crap going on with me. All of these conditions tend to feed off of each other or work together to influence how I feel, and sometimes it's really horrible. That's why I take medication and see therapists. I want to be in control of my life, not the other way around. But sometimes, when one or more of these conditions is out of sync my whole body is too. That's what's going on right.

For little over a month now I've felt not quite right. I've gone on with my daily tasks and J had a successful birthday party, but it's all been done with such effort. Instinctively, I knew something was out of place. Something had fallen out of sync. I had a feeling my thyroid levels had gone up. I was beginning to show symptoms like I had before: my depression was getting worse, dry skin and hair, inability to focus and concentrate the way I used to, total lack of energy. I just felt run down. Add to that I'm now acutely aware of my apnea and I've been fixating on it. I think, as a result, my nights have gotten more sleepless, or when I do sleep it's an hour here, an hour there. I wake up tired and so drained. I swear, next Friday can't get here soon enough.

I talked to my endocrinologist and he agreed to blood work. As I thought, my levels were up. I was put on a new, higher dosage. That was two weeks ago and I'm now beginning to feel better. I can feel my depression lessening, my skin and hair don't feel as dry and I'm able to focus again. However, I'm still dealing with the untreated apnea.

Even so, I'm on my way to feeling better.

Feeling this bad made me not want to blog or comment on anybody elses. The energy just wasn't there. Everything felt like an effort.

One thing I noticed going into the end of the week is that things with J have been much smoother. The last two mornings have been the old, usual routine. There haven't been any power struggles or J yelling at me. It's been easy and uneventful.

This morning I made a comment about how we were making good time and J looked at me and smiled and said, "You're in a better mood, Mom."

I asked him what he meant and he told me, "You haven't been happy. Y saw it too."

I told him it's not that I haven't been happy; I haven't been feeling good.

He nodded and said, "And that makes you not happy. And when you're not happy neither am I."

J has always been able to pick up on my moods, and he reacts in a way that's best, or not always best, for him. I forget this from time to time and it's clear I did again. Looking back I can see my anxiety was really high worrying over what was going on with me. J picked up on all that but didn't know how to process or deal with it. As a result it added to the behaviors and attitude he's been displaying.

I feel awful about this. The last thing I want is my moods or own issues to affect J the way they did. It's not fair to him and he shouldn't have to try and figure out and deal with something that he has no control over. And I think that was it. He knew something was wrong with me, he didn't know what and he had no idea how to take control of it and make it go away. He was put in an emotional situation that he didn't deserve to be in. And I put him there.

We're talking more about what happens at school every day and/or what's bothering him. But he's never mentioned anything about me. I don't think he knew how because he couldn't understand it in the first place. Thankfully, he and I see our respective therapists soon and we can talk to them about how to deal with this kind of situation and avoid it escalating to the point that it got. I also think he and I need to talk more when I'm not feeling good. I want him to understand what I feel isn't something he needs to take on and get control over. That's my job. All he needs to do is focus on himself. We need to figure out how to do that.

My feeling better, the kids and I are seeing Jumper tonight. We're all very excited. I wrote earlier how J is able to identify with the lead character. We'll see tonight if that still holds true. Regardless, it looks like a cool movie and we can't wait to see it.

Some people get it.

2008-02-10T23:37:00.000-06:00

Y is sick. She's been sick all weekend. It's strep. I feel bad for her because she's just miserable. And the antibiotics are taking forever to kick in. J has been so thoughtful and has told her several times he hopes she feels better soon. He worries so much when either of us are sick. Y moreso because of how close they are.

This reminds me of something that happened last week that I wanted to write about. I'm late in getting to it but better late than never.

Last Monday I got my taxes done. While talking with the woman doing them for me we got on the subject of our kids. The fact that J is autistic came into the conversation. I was prepared to get an "Oh, I'm so sorry," comment and then explain that there's nothing to be sorry about. I didn't get that at all. Instead what I got was a women who engaged me in a friendly and genuine conversation about autism. She wasn't talking to me about it out of morbid curiosity or pity. She genuinely wanted to know what it was like for me raising an autistic son.

She wondered if he'd be living with me all of his life or possibly in a home. I told her he's what would be considered high-functioning enough that I have no doubt someday he'll be married with a family and have a fulfilling career as a zookeeper or curator of his own zoo.

The woman gave me the biggest smile I have ever seen anybody give me whenever I've discussed J's autism.

She thought everything I told her was great and she wished him the best of luck.

We then talked more about how he's doing in school, how much he's progressed over the years on his own without a lick of biomed. Yes, he's been in therapy for years and he's on medication and he has wonderful support from home, school and doctors, but the progress he's made can be contributed to his efforts.

The woman thought it was great to know J has done so well over the years.

I could tell by her tone and the way we talked that she understood where I was coming from with J. She never once took pity on me or pulled the sympathy card. She asked if it was hard. I told her sometimes yes, but everything I get from J makes it so well worth it. I told her how he's taught me patience and understanding and how the world isn't always what we see it as.

She told me J sounds like a great kid. I told her he was.

School anxiety. Bionicles to the rescue.

2008-02-07T11:11:00.000-06:00

J’s good mood didn’t last long after his birthday weekend was over. He’s back to the defiant attitude. He’s been late for his bus every day so far because he doesn’t want to get ready for school. All he wants to do is play with the Bionicles he got for his birthday.

One thing I know J does – which I have to remind myself of continuously or I forget – is when he’s stressed about something he will play with these toys non-stop, building and rebuilding them. It helps soothe him and sort things out. This is what he’s doing. Unfortunately, this ritual has interfered with his morning routine.

I know what he’s stressing over. It’s what’s going on at school. After talking to his spec. ed. teacher last week some thing were brought into perspective.

While making adequate progress in his goals for almost all subjects, in math he has regressed. Math is one of his favorite subjects, along with science. So to be told he's regressing made me upset. Part of the anger was that I was never told about this before. No justifiable explanation could be given which didn’t please me too much either. His teacher is confident, though, that J will regain what he’s lost and will be back on track soon enough. Apparently the math is more difficult this year and while J is struggling he’s still learning.

I know she tried to ease my concerns but it didn’t really help.

A big part of this situation is that, as mentioned earlier, J has been fixating on his classmates and how he does in comparison to them academically. Talking with the teacher, this fixation actually has been narrowed down even further to one particular boy – one of his friends. Both are on the spectrum, both share a morning para, both work with the spec. ed. teacher together in the resource room. Everything J does he compares to what his friend does. And it’s for things like who gets to the resource room first, who gets to sit in a particular chair first, who finishes work first. J’s friend has a tendency to do all these first. As a result, all of this has become like a competition for J and he gets upset when he doesn’t prove himself to be the best.

He wants to be the best, the smartest, the quickest. He especially wants this when he and his friend are working together. This is his main fixation and it’s now spread out to his class mates.

One thing, though, that his teacher talked to me about - and this is something she’s been working on with J – is that while J’s friend may get to the room and into the chair first, and he may get his work done first the truth of the matter is his friend always has to redo his work because he’s so quick to get it done. Meanwhile, J takes his time – or at least tries to – and turns in work that never needs to be redone.

This should be a positive thing, but J doesn’t see it that way. He doesn’t see the fact his friend’s work needs to be redone or that his own is always done correctly. He sees it as his friend being better, faster and smarter than him. This causes a lot of anxiety for J. And this anxiety causes him to get very distressed. And it’s this distress that he’s trying to work through and I’m on the receiving end of.

One thing his teacher and I have discussed and have agreed to do is ask J how his day is going, or how it’s gone, or if there’s anything he wants to talk about. I already do this when he gets home. It's going to be done more at school and here as well. If there is something, let him talk about it. Like with seeing a therapist where you talk about your problems, let J talk about any he may have. And believe me; he’s been talking about his friend a lot. That’s something I’ve failed to mention so far. He brings up this particular friend every day. Looking back on it, this friend and the friendship they have has been causing a lot of anxiety for J. And all because he seems to think this friend does better than him.

Two things I know have recently been done now is J and his friend are walked down to the resource room every day whereas before they walked down on their own. They’re also now been given assigned seats.

His teacher is taking it a step further, though, and is going to separate the two as much as possible. She’s going to put them in different resource groups and see if that makes any kind of difference.

I hope it does because I don’t want to see the anxiety and distress caused by what has been happening deter his academic capabilities.

I'm going to keep following this at school and will be talking to his spec. ed teacher a couple of times a week to see how things progress and if there's anything else that needs be done. I'm also going to be discussing this with Dr. M and see what he recommends. I want this issue resolved so J isn't so stressed out by it.

Andn the meantime, he'll keep playing with his Bionicles, to help him work through it all. They are pretty awesome toys.

Success! And then some

2008-02-03T23:38:00.000-06:00

J's party was a success!!! He had a lot of fun, got some cool presents and really enjoyed having his friends over. There were moments when the boys got really loud and hyper but I can't say there were any serious sensory issues. No meltdowns or need for serious redirection. All the boys listened to me or Y or my mother when we needed to step in and lay down the law.

I can't even begin to explain how happy I was to see J with friends.

I had a game plan set up. The boys were downstairs where Y & I stayed and monitored. My mom was up in the kitchen getting the pizzas and cakes ready. Juice boxes and popcorn were the snacks. I asked about any diet restrictions but most of the parents agreed that since it was a birthday party they'd let their sons have whatever was on the menu. The only exemption I had was that some of the boys didn't eat chocolate so I had two cakes - one chocolate (because J LOVES chocolate) and one white.

One of the boy's mothers stuck around for the party and we talked. We've known of each other for a year now but have never connected. It was nice getting to know her better. She does a lot of advocacy work and was talking to me about getting into it. I want to do something more than PCA for J so I'm considering expanding with that route.

She praised me for having a house full of autistic boys and only one NT and having everything under control. I told her I put up with Y and her screaming, squealing, fangirling friends all the time, this can't be that much harder. Besides, I've gotten used to it with Y, I want to do the same thing with J. I joked about how I'll see which ones are harder to deal with.

And the truth of the matter is it was like having a house full of 11 year-old preteen boys. There were no indicators that any of them are autistic. Not that there necessarily would be but with the comment the other mom made it made me wonder and take a look. They joked around like boys their age would and about things boys their age would. There were a few raunchy comments thrown about but when watching them all together I could tell this was typical conversation and behavior for all of them.

None of the boys who couldn't stay wanted to go home. That was a good sign to me. A great sign actually. I want all my kid's friends to feel they can come to my house at any time and be comfortable here. I have it with Y's friends, I hope to achieve it with J's.

The party went well, however, the sleepover was a bit different situation. J ended up with two friends sleeping over instead of one. The second boy was a last minute decision. I thought everything would be okay because the two boys who stayed over are J's best friends. (Like Y, he has two best friends too). He had to learn how to divide his time between them and did an okay job after he and I talked about it. His two friends, though...I will never have the two of them over together again. They bickered the entire time and Sunday morning they got into a physical fight. After separating them and talking to each individually I was told this always happens with the two of them. That wasn't right to me. Friends don't fight like they did.

One thing I noticed with these two is one is NT, the other is autistic. Both interacted great with J individually, but not at all with each other. It was like they didn't know how - but knew with J. And I don't know if J is the buffer between the two or what it is. I just know I can't have these two together in this house again.

Because I felt so bad about what happened I apologized to the parents, in case the boys told them stories, and said I didn't want it to affect them coming over again, if they ever wanted to or were asked by J again. Honestly, the two boys' behavior really bothered me.

I had to tell myself I was a learning experience - for all of us.

All in all, though, it was a successful party and I'd gladly have any of the boys back again.

Also, I didn't get much for pictures. Some of the boys were camera shy and trying to get them to sit still long enough for pictures didn't exactly happen. I'll post what I have when the film is developed.

A Better Day

2008-02-01T12:44:00.000-06:00

First off:

Happy Birthday J!

He's 11 years old today. My baby is two years shy of being a teenager!

He was in a much better mood this morning when he got up. He was happy and laughing and cooperative! He did everything he was supposed to and did it without complaint.

It was the same thing last night too. We had a peaceful evening and morning.

He reminded me to pick up donut holes for his birthday snack for his class. He wanted fresh ones so I told him I'd get them after my doctor's appt. I got those dropped off and came home to find his SSI check in the mail. We'll be shopping for "cool clothes" this evening after he gets home.

Tomorrow is his party and all the boys are coming. Only one is sleeping over but that works out great. J wasn't happy about that at first, but when I reminded him it's one of his best friends and they'll be able to relax and watches movies and play with his toys and it'll just be the two of them he thought about it and liked the idea.

And honestly, I think if any more of the boys stayed over I'd be dealing with possible serious sensory issues.

So it all works out.

I still need to get the pizzas and some film. J will be helping me with that this evening too.

I've had several conversations so far with J's spec. ed. teacher and I'm upset and disturbed by some of what she told me, but I'll post about that after the weekend. Right now I'm looking forward to J's birthday party and will post about it on Sunday.

The Ignorance, It Burns!

2008-02-01T11:57:00.000-06:00

I went to the doctor this morning and while waiting to get some lab work done I had an "interesting" conversation with a woman sitting next to me.

I had just sat down to wait until I was called. I was about to start reading some more of "The Curious Incident of the Dog in the Night-Time". (I'm a very slow reader.) The woman next to me - whom I had no idea who she was - started talking and here's how it pretty much went.

"Oh, I've heard of that book. I don't think I could read it, though."

"Why not?" Somewhat confused as to why this complete stranger is talking to me.

"It's written by an autistic boy and it's hard to read. I don't want to read something like that."

Now, I have the book in my lap; I'm reading it, and she says something like that. "Actually, it's written by a man who writes it from the POV of an autistic boy."

"Oh."

"And if it helps me in any way to understand how my son's mind works then it's well worth reading."

She looks at me, almost in horror. "Oh, you're son is autistic? I didn't know. I'm so sorry."

"About what?" I'm curious to know what she's sorry about.

"About your son. It must be so hard for you."

"No, it's not hard at all. If anything, raising my son is easier than raising my neurotypical daughter."

"But he's autistic."

"What difference does that make?" Then it clicks. "Oh, I get it. You probably think my life is devastated and destroyed because of him. Not even close. You see, I love and accept my son for who he is, autism and all. There's nothing wrong with him, and there's certainly no pity party here or 'woe is me, my life is ruined. Look how hard it is for me", feeling sorry for myself crap. I don't do that and I don't like that people automatically assume that I do when they find out my son is autistic. Yes, he is autistic, but he's pretty damned amazing, and I wouldn't change him for anything."

The woman fell silent after that and I went about reading the book. Not long afterwards she moved when a different seat opened up. I was happy to see her do so because I didn't want to sit next to her anymore either.

I probably could have been nicer since I said most of what I did with a snarky attitude but I wasn't too keen on having blood drawn and she just ticked me off with her own attitude.

It rare I have situations like this but when I do I speak my mind. I just have to learn to be more eloquent about what I say and how, I think.

I can't deal with this. Not anymore this week

2008-01-31T09:23:00.001-06:00

I don't know how much more I can do this. That sounds awful but it's true. J is still out of sync. He's still on edge and I find myself cracking under the stress of it all.

I'm exhausted from his constant anger and yelling and nothing being right to suit him. I spent most of the morning trying to keep from crying while struggling to help J get ready. He was refusing again today and this time he was late for his bus. It started because he wanted to hang up all the pictures he drew of animals last night instead of getting ready for school. I tried to redirect him and it all went downhill from there.

He's at school now and I've since broken down. I haven't been able to stop crying.

I should be able to handle this. J has gone through this before. But right now I feel like I can't. Right now I feel like I'm failing him.

Out of Sync

2008-01-29T21:49:00.001-06:00

J came home today with a note from his spec. ed. teacher.

"J" has been on edge the past couple of days. He's fixated on his peers doing better than him in class and it's made him very agitated. He's also been combative with his paras. We're doing what we can to disfuse the situation, however, could you let us know if anything has happened at home that might contribute to his behavior so we can help deal with it here at school.

I really wasn't surprised by this note. J has been "out of sync", you might say, the past two days. Getting ready for school the past two mornings has been near impossible. He's refused to follow his schedule which has ended up with us in power struggles. Ones that I've not so happily won. This morning he hid the schedule so he wouldn't have to get ready and go to school. His reasoning. I found it under his bed and the morning battle to get him to follow it started.

He left this morning without saying goodbye to me or giving me a kiss. Instead of being hurt or upset by this I was relieved to see him get on the bus. Because he actually made it and on time.

His past two afternoons and evenings have been far from the chaotic calm that runs our home. He' s gone from being incredibly hyper one moment to extremely agitated the next. Throw in there defensive and aggressive and yelling at me or Y over the littlest thing and I've been left wondering what the heck is going on.

He's also been stuttering and stammering, getting stuck on words or repeating the first three - four words of a sentence several times much moreso than usual. And I mean a lot more.

Then I got the note today.

I asked him what was going on at school and he told me he didn't like that some of the other kids are doing better than him, that they're smarter and know more than he does. He said it bugs him a whole lot.

This is the first time J has ever taken notice of where he stands academically against his peers. The first time he seems to care. I told him how he learns things is okay. That how he does it is all right and there's nothing wrong with it. I wasn't sure what else to say, or what to make of it, and I know this is something I'll have to talk to his teachers about.

J told me it wasn't good enough.

He's been completely on edge ever since. Just a little bit ago, when he was explaining something to me, I asked him, very politely, to please stop pushing the chair I was sitting in and he turned around and screamed "FINE!" at me. Then stomped off and down the stairs.

I sat there stunned and trying to figure out what I did to deserve that.

Then I got mad because I didn't deserve to be yelled at that way.

But this is how the past two days have gone.

I really don't want to think that he's starting to feel inferior to or not as intelligent as his peers. He's smart in his own way, in his own right and I don't want him to start thinking otherwise.

I know I'll be calling his spec. ed. teacher tomorrow to see what we can do.