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.
Wednesday, April 9, 2008
Friday, April 4, 2008
Thursday Evening Theatre
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.
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.
Wednesday, April 2, 2008
I look at my son and what do I see?
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.
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
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.
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.
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