Sacrificing the needs of the one for the needs of the Aspie
Every Tuesday, the kids and I go to Chick Fil A for dinner and kids craft night. We have been doing this since Annelise was an infant. It is one of those predictable rituals that Ella finds comfort in. Every Tuesday, she knows we will go for dinner and she will get to see her best friend there.
Last Tuesday, Annelise was extremely tired. It was Vacation Bible School week, and she had been playing all afternoon and had not taken a nap. She does not usually, but VBS wears my kids out! Her fit started while we were driving to the restaurant. It continued as we came inside, and she stayed between the exterior and interior doors. She was quiet only briefly, and then realized that her milk carton had a picture of a BOY on it and she wanted one with a GIRL on it (such a thing does not exist, it was just something to yell about). Knowing Annelise like I do, I knew this tantrum was due to lack of sleep, and I also knew that it would continue whether we were at Chick Fil A or not. Since this particular location has an outside eating area, I took Annelise and Teddy out there, and Ella and Maddie stayed inside with their friends. Annelise kept on screaming and crying and carrying on. We finished our food, the big girls made sundaes at the craft table, and then we packed up to go home. Annelise was still screaming, and was even yelling at me as her eyes closed and she passed out from exhaustion.
Holy Cow.
I had a teachable moment with Ella after I got Annelise put to bed. Earlier that day, I had been stressed and tired and hungry, and had a meltdown. The kids were loud, Ella was complaining, it was SO HOT outside, and it was time for lunch. I was not in a good place for stress. After lunch, we were invited to Ella's best friend's house. We spent the whole afternoon there. She has a huge house, and all day long, the kids were outside, up stairs, anywhere other than around us. It was blissful. I was so rested and restored! And then Annelise's tantrum struck. I was able to remain calm, to not yell at her, to reassure her, to think clearly enough to get her screaming away from other restaurant guests.. AND, to realize that I would have two meltdowns going simultaneously, in public, if I tried to make us leave Chick Fil A on Tuesday night. I pointed out to Ella that because I had gotten time to myself, to rest and be restored, I was far better able to cope with Annelise's meltdown, even though it was loud and awful and lasted almost a full hour.
She understood that there was a big difference in the way I behaved at those two points, and said that she understood how having herself together when she was in a stressful situation made it go better. When she has left the chaos of the end of the school day only to enter the different chaos of our minivan, it is NOT a good time for her. When she has had some time to decompress in the schoolbus, walk to our house from the bus stop, and come into our home that is not as enclosed as a minivan, things go a lot better.
So, we both learned a few things that day!
Monday, June 29, 2009
Wednesday, June 17, 2009
Happy Half Birthday, you have Aspergers
Happy Half Birthday.. You have Aspergers..
Ella had a terrible, horrible, no good, very bad day. At least between lunch and when we walked in the door after school.
Ella has a bully at school named Makayla. Generally, the bully just shoots Ella dirty looks. Yesterday there were 4 different instances of her shooting Ella dirty looks. To top it off, Ella accidentally hit Makayla on the head with her umbrella yesterday, and Makayla erupted at her for it. She walked out of school feeling like she was going to cry, and got in the van, very stressed and unprepared to deal with the chaos of 3 small children.
She had three separate meltdowns just on the way home. She wanted to talk about her day, but Maddie was interrupting, Annelise was singing to herself, and Teddy was laughing and making noises at Annelise. It was more than Ella could take. She was hitting the chair in front of her, the window, her leg, yelling at us that we couldn't be quiet, we wouldn't listen, we didn't care about her, and we didn't love her. She was hurting herself with the strength of hitting things, and telling Maddie to stop looking at her "in that way", and ran into the house and into her room when we got home, yelling "why does everyone hate me?" as she went.
I got the other kids settled doing other things, playing and watching a video I think, and went to talk to Ella. I asked her to tell me about her day (which I've recounted). After that, we talked about her meltdowns. I asked her if she realized that they were caused by bottled up stress and emotions she had not talked about. She told me that she wishes that she were not too afraid to talk to her teacher about how she feels about her bully glaring at her, and she also wishes that her teacher would used the OT's recommendations for allowing her to do small things to help alleviate stress in school, especially allowing her to take tests and do writing assignments in a quiet place outside the classroom. I told her I would talk to her teacher, but with 2 weeks left, she will probably just need to deal with things.
I also asked if she realized that other people are affected by her meltdowns. I gave her the mental picture of being a tornado coming into our car after school, whirling and then tossing cars and roofs and tractors and glass at us as she melted down. We were doing what we usually do, but it was more than she could handle because of the bad day she'd had. She laughed at the imagery, and agreed that we were all doing what we usually do. I also told her that Maddie had been asking questions about her. About why she can get over a fit and Ella can't. About why Ella has meltdowns at the store or in the car, and she doesn't. About why Ella won't eat a lot of foods and wears the same clothes and shoes all the time. And that she is starting to be embarrassed when Ella has a meltdown, but doesn't know why Ella isn't embarassed.
I mentioned to her that after her father has been away on business for half the week and comes home, that we have noticed that he does not handle the usual noise and ruckus of our house well, either. That he tends to retreat into our bedroom with the laptop to stay out of the chaos. Everyone is doing what we always do, but it is too much when he is not used to it or in the right emotional state to deal with it.
I asked her if she had noticed that I had been acting different when she had a meltdown, too. I asked her what I did when she had a meltdown about picking out clothes the other morning. She said "You didn't walk away, you didn't yell and tell me to hurry, and you helped me make choices". I told her that was right. I asked her how I reacted today in the car while she was freaking out, she said "You didn't yell in my face, you didn't say you would ground me, and you tried to make everyone be quiet in the car". I agreed. I asked if that was different than I had acted before, and she said yes.
I told her that I had been doing a lot of reading about how her brain works. That she inherited the way her brain works from her father. I had been pointing out to her recently that she has inherited different things about her body from different people. Her eyes are blue like Grandma's, she has freckles like me, and she processes things and reacts to things the way she does because her brain is more like her father's. She has inherited her father's same ways of thinking, reacting to stress and to loud noise, his coordination for things like putting on socks.. his love of predictability and how it makes him makes feel safe. For instance, I like the novelty of choosing where to eat after church, and he stresses out if we don't always go to the same place because it brings him comfort and stability. I told her it took some real hard thinking for me to understand why her father felt that way because it didn't make any sense to me at all. That the sameness would be boring and limiting, because that's how my brain thinks.
I told her that the books I had been reading had helped me understand how to help her work through her meltdown, that it would not help if I demanded that the meltdown stop, and that she was having a meltdown because of her perspective on the situation. I needed to see her perspective, not just mine.
I asked her if she remembered the test she recently took with Dr. H., and that that she and her father, and many other people, have brains that process the same way hers does. I mentioned to her that she has a friend with Dyslexia. Her friend's mom is learning more about how to teach her because there is a name for her reading difference and processing of words and numbers. I told Ella that she has processing and reacting difference called Aspergers Syndrome, and that about 1 in 150 kids have Aspergers Syndrome or another one of the Autism Spectrum disorders. That she is in good company. I said that I knew there were kids at her school that have Aspergers or Autism also.
She said she didn't have any questions about it when I asked her, but that she was glad that I could read about it. I told her that it was helping me be a better mom and a better wife since her father has it too.
It was a lot to take in. I'm not surprised that she didn't have any questions. But I had never seen her feel so misunderstood and rejected, and she seemed more aware than usual that she was different from people around her, so it seemed like a good time to have this discussion.
She gave me a piece of good news too:
Late last week, Makayla played a trick on her and Ella felt embarrassed when Makayla and her friend laughed at her for her reaction. Ella talked to her friend Abigail, and the bully and her friend got angry because Ella told Abigail what they did. Abigail went to them and told them that they were mean to trick Ella. She told Ella that she would stick by her all through school. Abigail and another girl named Heather have been Ella's school friends this year, and I thought it was sweet to hear that Abigail stood up for her and promised to be her friend and help protect her from bullies. She said that it made her feel safe that Abigail talked to the bullies without her asking, too.
I have found several children's books about Asperger's and Autism, and wanted to get one, but wanted to tell Ella about her diagnosis first. I will review the one I decide on soon.
Thanks for listening. I am so glad to have you supporting me whether by responding to my posts or just taking the time to read and think about us!
Ella had a terrible, horrible, no good, very bad day. At least between lunch and when we walked in the door after school.
Ella has a bully at school named Makayla. Generally, the bully just shoots Ella dirty looks. Yesterday there were 4 different instances of her shooting Ella dirty looks. To top it off, Ella accidentally hit Makayla on the head with her umbrella yesterday, and Makayla erupted at her for it. She walked out of school feeling like she was going to cry, and got in the van, very stressed and unprepared to deal with the chaos of 3 small children.
She had three separate meltdowns just on the way home. She wanted to talk about her day, but Maddie was interrupting, Annelise was singing to herself, and Teddy was laughing and making noises at Annelise. It was more than Ella could take. She was hitting the chair in front of her, the window, her leg, yelling at us that we couldn't be quiet, we wouldn't listen, we didn't care about her, and we didn't love her. She was hurting herself with the strength of hitting things, and telling Maddie to stop looking at her "in that way", and ran into the house and into her room when we got home, yelling "why does everyone hate me?" as she went.
I got the other kids settled doing other things, playing and watching a video I think, and went to talk to Ella. I asked her to tell me about her day (which I've recounted). After that, we talked about her meltdowns. I asked her if she realized that they were caused by bottled up stress and emotions she had not talked about. She told me that she wishes that she were not too afraid to talk to her teacher about how she feels about her bully glaring at her, and she also wishes that her teacher would used the OT's recommendations for allowing her to do small things to help alleviate stress in school, especially allowing her to take tests and do writing assignments in a quiet place outside the classroom. I told her I would talk to her teacher, but with 2 weeks left, she will probably just need to deal with things.
I also asked if she realized that other people are affected by her meltdowns. I gave her the mental picture of being a tornado coming into our car after school, whirling and then tossing cars and roofs and tractors and glass at us as she melted down. We were doing what we usually do, but it was more than she could handle because of the bad day she'd had. She laughed at the imagery, and agreed that we were all doing what we usually do. I also told her that Maddie had been asking questions about her. About why she can get over a fit and Ella can't. About why Ella has meltdowns at the store or in the car, and she doesn't. About why Ella won't eat a lot of foods and wears the same clothes and shoes all the time. And that she is starting to be embarrassed when Ella has a meltdown, but doesn't know why Ella isn't embarassed.
I mentioned to her that after her father has been away on business for half the week and comes home, that we have noticed that he does not handle the usual noise and ruckus of our house well, either. That he tends to retreat into our bedroom with the laptop to stay out of the chaos. Everyone is doing what we always do, but it is too much when he is not used to it or in the right emotional state to deal with it.
I asked her if she had noticed that I had been acting different when she had a meltdown, too. I asked her what I did when she had a meltdown about picking out clothes the other morning. She said "You didn't walk away, you didn't yell and tell me to hurry, and you helped me make choices". I told her that was right. I asked her how I reacted today in the car while she was freaking out, she said "You didn't yell in my face, you didn't say you would ground me, and you tried to make everyone be quiet in the car". I agreed. I asked if that was different than I had acted before, and she said yes.
I told her that I had been doing a lot of reading about how her brain works. That she inherited the way her brain works from her father. I had been pointing out to her recently that she has inherited different things about her body from different people. Her eyes are blue like Grandma's, she has freckles like me, and she processes things and reacts to things the way she does because her brain is more like her father's. She has inherited her father's same ways of thinking, reacting to stress and to loud noise, his coordination for things like putting on socks.. his love of predictability and how it makes him makes feel safe. For instance, I like the novelty of choosing where to eat after church, and he stresses out if we don't always go to the same place because it brings him comfort and stability. I told her it took some real hard thinking for me to understand why her father felt that way because it didn't make any sense to me at all. That the sameness would be boring and limiting, because that's how my brain thinks.
I told her that the books I had been reading had helped me understand how to help her work through her meltdown, that it would not help if I demanded that the meltdown stop, and that she was having a meltdown because of her perspective on the situation. I needed to see her perspective, not just mine.
I asked her if she remembered the test she recently took with Dr. H., and that that she and her father, and many other people, have brains that process the same way hers does. I mentioned to her that she has a friend with Dyslexia. Her friend's mom is learning more about how to teach her because there is a name for her reading difference and processing of words and numbers. I told Ella that she has processing and reacting difference called Aspergers Syndrome, and that about 1 in 150 kids have Aspergers Syndrome or another one of the Autism Spectrum disorders. That she is in good company. I said that I knew there were kids at her school that have Aspergers or Autism also.
She said she didn't have any questions about it when I asked her, but that she was glad that I could read about it. I told her that it was helping me be a better mom and a better wife since her father has it too.
It was a lot to take in. I'm not surprised that she didn't have any questions. But I had never seen her feel so misunderstood and rejected, and she seemed more aware than usual that she was different from people around her, so it seemed like a good time to have this discussion.
She gave me a piece of good news too:
Late last week, Makayla played a trick on her and Ella felt embarrassed when Makayla and her friend laughed at her for her reaction. Ella talked to her friend Abigail, and the bully and her friend got angry because Ella told Abigail what they did. Abigail went to them and told them that they were mean to trick Ella. She told Ella that she would stick by her all through school. Abigail and another girl named Heather have been Ella's school friends this year, and I thought it was sweet to hear that Abigail stood up for her and promised to be her friend and help protect her from bullies. She said that it made her feel safe that Abigail talked to the bullies without her asking, too.
I have found several children's books about Asperger's and Autism, and wanted to get one, but wanted to tell Ella about her diagnosis first. I will review the one I decide on soon.
Thanks for listening. I am so glad to have you supporting me whether by responding to my posts or just taking the time to read and think about us!
Sunday, June 7, 2009
A day in the life... pass the valium, please!
A day in the life... pass the valium please
Some wandering reflections on today...
This morning was another battle about clothes. I'd say we have one of these every week at some point or another. She had an idea about what she was going to wear but had not laid it out. That is usually a really bad thing. The Doctor and I were out last night, babysitter didn't make sure to ask. Well, this morning I invited Maddie and Ella to come out to Starbucks with me for chai. Both girls seemed a little clingy after I had been gone a lot yesterday. Ella couldn't find anything that felt comfortable. I put up with the searching, the whining, the frustration, and the sobbing. I remained rational and supportive, and tried to give her options. Even looked in the dirty laundry for her. It got later and later. I got to a point where we needed to leave. I gave her a choice between two things, she refused. I told her we needed to leave, she ratcheted it up a notch and started throwing clothes and begging me to not leave, and generally hyperventilating and gagging on her sobs. I was trying to get cereal for Teddy and Annelise before we left, and my hands were shaking so bad from the ongoing auditory assault and my blood pressure was so high that I dropped and broke several things.
We finally got in the car. She and Maddie started in on each other with the poking and the tattling. Ella was upset and not stable, and always takes it out on some child. I thought I was going to go off the deep end. I grabbed out my Rescue Remedy (herbal supplement used for shock victims, actually), and put on some Steven Curtis Chapman. Loud.
Finally, some peace.
Ended up just going through the drive thru because it was SO much later than I expected. Got to church, everything was just ducky for Ella.
I was shell shocked for most of Sunday School class. I asked for prayer for The Doctor's business trip (each week 3 days, sometimes more), prayer for Ella's dental appt which never goes well because she freaks out on the anesthesia and then freaks out about the tingly sensation when the numbing meds wear off. A woman in my class mentioned that she wished she could help me, that I sounded overwhelmed. I told her to just pray for me. Another friend mentioned that she and her husband wished there was something they could do for me (she had been in the Sunday school class) and I asked for prayer for my ability to endure and cope, stretch and grow.
I took Ella on an errand to the store to get cucumber and onion around 3pm. She wanted to bring a book into the store. I was in a hurry, I told her no. We needed to move fast, she couldnt read while we walked, and I didn't want her to lose the book. She got back into the car, locked the doors, crossed her arms over her chest, and glared at me. I counted to 3 and she got out. We got in the store and she yelled at me about the book again, and ran into the bathroom. I got my produce and went after her. Had another discussion about how we needed to move quickly, and said I wanted to get garlic bread. In the garlic bread aisle, there happened to be flip flops for sale, and she asked if we could look at them. She was happy to find several that were comfortable and I told her she could have them.
Her love language is gifts. She told me that she knew I loved her because I bought her shoes. All was rosy.
I took the opportunity to tell her that I could feel her love when she said I did nice things for her, or cooked a good meal, that what speaks love to me is words of affirmation. She apologized for an incident on Valentine's Day that I dont remember, but I forgave her for it. One nice little teachable moment today.
I left for the choir party with repeated ritual "hug kiss nosy", she must have asked 6 times for it as I was trying to leave.
She did not call me while I was gone to ask me to come home. Yay! Good thing, because I was trying unsuccessfully to not have a breakdown. Had a good emotion filled talk with a wise and wonderful friend. Wish I hadn't cried around other people, but what are you going to do, you know? They were busy, and I didn't mind sharing with my friend. I barely could even enjoy being out of the house today at the choir party, just so overcome with the yelling and rage and trying to make sure I didn't flip out on her while she was melting down. Why is it so hard to act like an adult around her? I wonder if other moms of Autism spectrum kids have this issue.. I think many moms of teens do!
So, the end of the day, and I am still processing it all.
This whole brand new perspective on Ella with her official diagnosis, learning about Aspergers and how I have to bring my "A-game" every minute so I can avoid meltdowns just kicks my butt. I know with her sensory meltdowns, if I can see them coming, I can avoid them. If other 3 kids aren't needing me, we aren't in a hurry, etc. We still don't really have a sensory diet. I hear other moms talk about how their OT gives them a sensory diet. I have rough outline, but feel like I would need a weekend away to match up what OT recommends with activities in the Out of Sync Child books and create a sensory diet for her.
If I get bad sleep especially, I am really short tempered and snarky and don't really see her Aspergers, what I see is a defiant 9 yr old who can't act her age. For all the world, she seems like your average 9 year old, and there are days when that's all I see or want to see too. I get SO frustrated at her, and she is just being who she is. I really JUST read about uneven development in Aspergers/Autism and see now how that is what is really going on. Years of expecting much more out of her and and belitting her to act her age, now I know she has a different maturity level trajectory. But I dont know what to expect of her now. When her 6 yr old sister is in many ways becoming more mature, what do I do with that? This past year, they have both sorta been age 6. But Maddie is growing up and Ella, well, isn't. I am just learning about the whole concept and how even though Ella is 9, she has a high school level reading ability, but a K4 emotional maturity level. She's all over the place. This is an aspect I need a lot of direction with from other moms of kids on the spectrum. She just CANT modulate her emotional reactions. She wont take responsibility to get herself together to do well, and when I see her melting down and offer suggestions of things her OT has told her to do when she starts feeling stressed, she refuses. I don't really believe she is "old enough" to get it.
Also, Maddie is starting to understand there's a difference. She is embarrassed at Ella's sensory meltdowns, even if they are just at home or in the car, especially when they are in public. She is not understanding why we tolerate older sister's fits, etc. Last night I saw several kids books on autism spectrum.. for Aspergers and for Autism. BUT we haven't talked to Ella about having Aspergers. Dont feel like I can get a kids book on it to help Maddie till we tell her.. With her emotional maturity being pretty delayed, like 5 yr old level, it doesn't seem appropriate to talk about it with her. I don't like the whole label concept being put on my child for her to understand being "different", yet books I'm reading recommend talking about the differences in the way you think and process with your child. She loves therapy, doesn't mind having all this testing done, I don't think she thinks anything is amiss. Its a quandary.
Thanks for listening. I feel a lot better just getting all this out there.
Some wandering reflections on today...
This morning was another battle about clothes. I'd say we have one of these every week at some point or another. She had an idea about what she was going to wear but had not laid it out. That is usually a really bad thing. The Doctor and I were out last night, babysitter didn't make sure to ask. Well, this morning I invited Maddie and Ella to come out to Starbucks with me for chai. Both girls seemed a little clingy after I had been gone a lot yesterday. Ella couldn't find anything that felt comfortable. I put up with the searching, the whining, the frustration, and the sobbing. I remained rational and supportive, and tried to give her options. Even looked in the dirty laundry for her. It got later and later. I got to a point where we needed to leave. I gave her a choice between two things, she refused. I told her we needed to leave, she ratcheted it up a notch and started throwing clothes and begging me to not leave, and generally hyperventilating and gagging on her sobs. I was trying to get cereal for Teddy and Annelise before we left, and my hands were shaking so bad from the ongoing auditory assault and my blood pressure was so high that I dropped and broke several things.
We finally got in the car. She and Maddie started in on each other with the poking and the tattling. Ella was upset and not stable, and always takes it out on some child. I thought I was going to go off the deep end. I grabbed out my Rescue Remedy (herbal supplement used for shock victims, actually), and put on some Steven Curtis Chapman. Loud.
Finally, some peace.
Ended up just going through the drive thru because it was SO much later than I expected. Got to church, everything was just ducky for Ella.
I was shell shocked for most of Sunday School class. I asked for prayer for The Doctor's business trip (each week 3 days, sometimes more), prayer for Ella's dental appt which never goes well because she freaks out on the anesthesia and then freaks out about the tingly sensation when the numbing meds wear off. A woman in my class mentioned that she wished she could help me, that I sounded overwhelmed. I told her to just pray for me. Another friend mentioned that she and her husband wished there was something they could do for me (she had been in the Sunday school class) and I asked for prayer for my ability to endure and cope, stretch and grow.
I took Ella on an errand to the store to get cucumber and onion around 3pm. She wanted to bring a book into the store. I was in a hurry, I told her no. We needed to move fast, she couldnt read while we walked, and I didn't want her to lose the book. She got back into the car, locked the doors, crossed her arms over her chest, and glared at me. I counted to 3 and she got out. We got in the store and she yelled at me about the book again, and ran into the bathroom. I got my produce and went after her. Had another discussion about how we needed to move quickly, and said I wanted to get garlic bread. In the garlic bread aisle, there happened to be flip flops for sale, and she asked if we could look at them. She was happy to find several that were comfortable and I told her she could have them.
Her love language is gifts. She told me that she knew I loved her because I bought her shoes. All was rosy.
I took the opportunity to tell her that I could feel her love when she said I did nice things for her, or cooked a good meal, that what speaks love to me is words of affirmation. She apologized for an incident on Valentine's Day that I dont remember, but I forgave her for it. One nice little teachable moment today.
I left for the choir party with repeated ritual "hug kiss nosy", she must have asked 6 times for it as I was trying to leave.
She did not call me while I was gone to ask me to come home. Yay! Good thing, because I was trying unsuccessfully to not have a breakdown. Had a good emotion filled talk with a wise and wonderful friend. Wish I hadn't cried around other people, but what are you going to do, you know? They were busy, and I didn't mind sharing with my friend. I barely could even enjoy being out of the house today at the choir party, just so overcome with the yelling and rage and trying to make sure I didn't flip out on her while she was melting down. Why is it so hard to act like an adult around her? I wonder if other moms of Autism spectrum kids have this issue.. I think many moms of teens do!
So, the end of the day, and I am still processing it all.
This whole brand new perspective on Ella with her official diagnosis, learning about Aspergers and how I have to bring my "A-game" every minute so I can avoid meltdowns just kicks my butt. I know with her sensory meltdowns, if I can see them coming, I can avoid them. If other 3 kids aren't needing me, we aren't in a hurry, etc. We still don't really have a sensory diet. I hear other moms talk about how their OT gives them a sensory diet. I have rough outline, but feel like I would need a weekend away to match up what OT recommends with activities in the Out of Sync Child books and create a sensory diet for her.
If I get bad sleep especially, I am really short tempered and snarky and don't really see her Aspergers, what I see is a defiant 9 yr old who can't act her age. For all the world, she seems like your average 9 year old, and there are days when that's all I see or want to see too. I get SO frustrated at her, and she is just being who she is. I really JUST read about uneven development in Aspergers/Autism and see now how that is what is really going on. Years of expecting much more out of her and and belitting her to act her age, now I know she has a different maturity level trajectory. But I dont know what to expect of her now. When her 6 yr old sister is in many ways becoming more mature, what do I do with that? This past year, they have both sorta been age 6. But Maddie is growing up and Ella, well, isn't. I am just learning about the whole concept and how even though Ella is 9, she has a high school level reading ability, but a K4 emotional maturity level. She's all over the place. This is an aspect I need a lot of direction with from other moms of kids on the spectrum. She just CANT modulate her emotional reactions. She wont take responsibility to get herself together to do well, and when I see her melting down and offer suggestions of things her OT has told her to do when she starts feeling stressed, she refuses. I don't really believe she is "old enough" to get it.
Also, Maddie is starting to understand there's a difference. She is embarrassed at Ella's sensory meltdowns, even if they are just at home or in the car, especially when they are in public. She is not understanding why we tolerate older sister's fits, etc. Last night I saw several kids books on autism spectrum.. for Aspergers and for Autism. BUT we haven't talked to Ella about having Aspergers. Dont feel like I can get a kids book on it to help Maddie till we tell her.. With her emotional maturity being pretty delayed, like 5 yr old level, it doesn't seem appropriate to talk about it with her. I don't like the whole label concept being put on my child for her to understand being "different", yet books I'm reading recommend talking about the differences in the way you think and process with your child. She loves therapy, doesn't mind having all this testing done, I don't think she thinks anything is amiss. Its a quandary.
Thanks for listening. I feel a lot better just getting all this out there.
Saturday, June 6, 2009
Teddy has discovered Thomas the Tank Engine
Teddy has discovered Thomas the Tank Engine
Somewhere near the age of 2, all of my children have discovered a favorite tv show or movie or video. IT becomes essential to their happiness, and in some cases borders on obsession. Generally, it wanes not long after they turn 2, but for about a 6 month period, it can get a little obnoxious :)
For Ella, it was Blue's Clues. She wanted to watch it first thing upon waking, she prayed for the characters when she said her prayers at night, she would have wanted an intravenous hookup of Blue's Clues if it had been available! She continued enjoying the show for several years, but her passion for it in that way was shortlived.
For Maddie, it was The Wiggles. We happened to have two televisions at the time, and it worked out well for her since she wanted ALL Wiggles ALL the time! We had Wiggles CDs in the car and played two songs over and over and over. Thankfully, she grew out of that rather quickly, and the Wiggles left the radar before she was 2 1/2.
For Annelise, it was and is The Little Einsteins!! She is their number one fan. Still. At 3 1/2! She has a rocket toy with all four team members, she has sheets and pillowcases and a bedspread, she has pajamas and shirts and a Leo doll and a conductor wand that lights up and plays music, she has several matching and bingo and card games.. bless her. She has a real thing for Leo, the redheaded leader of the Little Einsteins. I even made a Rocket cake for her third birthday! She likes Dora and she likes Diego, she can enjoy The Wonder Pets and The Backyardigans. But she LOVES those Little Einsteins.
It has just been in the last few weeks that Teddy has started bringing me a video case for Thomas and saying "beep beep!", and I bought a few Thomas books at Barnes and Noble this past week. It just brings him such joy. He is so excited, he gets a look of wonder and awe and glee on his face, just in the anticipation of reading the books or watching the shows. He made his first attempt at saying Thomas yesterday, and it came out "Tah-pas". He also likes Gordon. I goess I need to research about train sets in case this turns out to be His Big Thing and I can prepare for his birthday and Christmas. I love Craigslist, and sure hope we can get a train table and set for him that is more affordable than not. Annelise will have a great time with the train set too, she enjoys playing at train tables when we see them.
Have your children had a deep and abiding love for any movies or tv shows like this? I would love to hear about them!!!
Somewhere near the age of 2, all of my children have discovered a favorite tv show or movie or video. IT becomes essential to their happiness, and in some cases borders on obsession. Generally, it wanes not long after they turn 2, but for about a 6 month period, it can get a little obnoxious :)
For Ella, it was Blue's Clues. She wanted to watch it first thing upon waking, she prayed for the characters when she said her prayers at night, she would have wanted an intravenous hookup of Blue's Clues if it had been available! She continued enjoying the show for several years, but her passion for it in that way was shortlived.
For Maddie, it was The Wiggles. We happened to have two televisions at the time, and it worked out well for her since she wanted ALL Wiggles ALL the time! We had Wiggles CDs in the car and played two songs over and over and over. Thankfully, she grew out of that rather quickly, and the Wiggles left the radar before she was 2 1/2.
For Annelise, it was and is The Little Einsteins!! She is their number one fan. Still. At 3 1/2! She has a rocket toy with all four team members, she has sheets and pillowcases and a bedspread, she has pajamas and shirts and a Leo doll and a conductor wand that lights up and plays music, she has several matching and bingo and card games.. bless her. She has a real thing for Leo, the redheaded leader of the Little Einsteins. I even made a Rocket cake for her third birthday! She likes Dora and she likes Diego, she can enjoy The Wonder Pets and The Backyardigans. But she LOVES those Little Einsteins.
It has just been in the last few weeks that Teddy has started bringing me a video case for Thomas and saying "beep beep!", and I bought a few Thomas books at Barnes and Noble this past week. It just brings him such joy. He is so excited, he gets a look of wonder and awe and glee on his face, just in the anticipation of reading the books or watching the shows. He made his first attempt at saying Thomas yesterday, and it came out "Tah-pas". He also likes Gordon. I goess I need to research about train sets in case this turns out to be His Big Thing and I can prepare for his birthday and Christmas. I love Craigslist, and sure hope we can get a train table and set for him that is more affordable than not. Annelise will have a great time with the train set too, she enjoys playing at train tables when we see them.
Have your children had a deep and abiding love for any movies or tv shows like this? I would love to hear about them!!!
Saturday, May 30, 2009
One Mom's Look at Asperger's
One Mom's look at Asperger's
This was not written by me, but I felt I should pass it along to anyone who might identify with it or have comment on its contents. It was posted on a homeschool message board by a mom of a child on the Autism Spectrum. I thought this was a very well thought out, understandable explanation of what Asperger's Syndrome can be like.
----------
Asperger's Syndrome is a neurological condition and can affect anything related to the nervous system including cognitive and sensory functions. Nobody knows what causes it yet, and it manifests somewhat differently from person to person. It is considered by some to be on the "autism spectrum", and by others to be a separate disorder that has many similarities to autism.
By definition, a person with Asperger's has an average to above average IQ (if it's lower, they get a different diagnosis). People with Asperger's Syndrome characteristically have deficits in social functioning, including odd and inappropriate behaviors, difficulty with non-verbal communication such as body language and facial expression, and can often have a hard time understanding non-literal language such as sarcasm, idioms and figures of speech.
They can also have difficulty understanding the ebb and flow of conversation, tending to "lecture" rather than converse. (One nick-name for the syndrome is "little professor syndrome" because they're very smart and tend to speak pedantically.) They usually have very narrow, focused interests, often in unusual things (sometimes referred to as "obsessions" or "passions", depending on one's attitude about the condition).
Often people with Asperger's also experience the world differently with their senses than most people around them (sensory integration disorder). Again, this differs from person to person, but an Aspie may have an aversion to (or conversely may crave) certain types or intensities of lights, colors, textures, touch, tastes, smells, sounds, and so forth, or may have difficulty sensing where their body is in space, making them fidgety and off balance. Many Aspies also have difficulties with changes in routine because they are already dealing with so much that a surprise can really throw them off their precarious mental balance.
Aspies also often have comorbid conditions such as anxiety, depression, seizures, tics, OCD, ODD, PTSD, ADHD and others that can be diagnosed and treated separately, but which often go undiagnosed because they are just attributed to the AS.
Behavior in an Aspie can be rather complicated to unsnarl, as sometimes "bad" behavior can be a reaction to a painful sensory stimulus, an overloaded nervous system, a "fight, flight, or freeze" response triggered by a social situation they perceive as threatening, or just developmentally delayed impulse control. Developmentally these kids can be all over the chart--it's not so much DELAYED development (though there usually are delays in some areas) as it is UNEVEN development
For example, a 12 yo boy might test out at a 22 yo level in some things and about a 5-7 yo level in others, and all of these can vary depending on whether he's hungry, tired, excited, calm, etc. It can be very confusing for the adults in the scenario when they're dealing with a 6 year old child who can multiply multi-digit numbers in his head and read at a high school level, but isn't yet potty-trained. We tend to think of skills developing more or less in a pattern so that if a child can do X, we should be able to also expect him to do Y, but with Aspies that all goes out the window and you just have to really get to know YOUR child's developmental pattern and roll with the punches.
And sometimes "bad behavior" is just plain old bad behavior too, and the proper response is discipline. But discipline isn't going to help if the problem is sensory. If you take a child who is in pain, say from a too-bright light (which you don't notice, because your nervous system is not oversensitive) and beat him for being in pain, it really only makes things worse, if you see what I mean, and will probably escalate the behavior. And if he is really developmentally much younger than he is in some area, such as impulse control, then it's not really fair to expect him to be able to perform at the same level as other kids his age, and no amount of punishment will speed up the development process, and it may in fact impede it.
Aspies often come across as either the "angel" or the "demon" behavior-wise. This is because different people react differently to being overwhelmed, and Aspies spend a LOT of time feeling overwhelmed. The two most typical reactions for ANYONE who is overwhelmed, not just Aspies, are to either withdraw, or to fight back. The withdrawers get labeled as "good" because they tend to just sit there and be quiet, whereas the fighters get labeled as "bad" because they tend to pitch humongous, out of control fits (aka "meltdowns"). But generally both behaviors are indicative of neurological overwhelm, and it's best to help your child find a happy medium where they are cheerfully engaged in what is going on.
Aspergers is sort of a buffet-style diagnosis, which is one reason it seems so different from person to person. Something I think many people don't realize is that since there's not an actual medical test for Asperger's Syndrome, the diagnosis is really more a way of categorizing people according to behavior than it is an indication that some particular, specific thing is anatomically different. There probably is a consistent anatomical thing (or things) going on, but research hasn't nailed it down yet. So it's a very subjective thing, not like, say Down's Syndrome or Fragile X where you can look at the chromosomes and say "yep, he's got it".
parents should keep in mind too when reading over things like this is that the intensity of the symptoms makes a big difference. A lot of "normal" kids are a little socially awkward or have unusual hobbies, most kids throw tantrums, and some are a little oversensitive to certain flavors or whatever. It's not usually considered a "disorder" unless these "normal" behaviors are taken way to the extreme--to the extent that they interfere with the "normal" functioning of a person. If it's causing serious issues in life, it may be a diagnosable disorder. If you can compensate fairly easily and work around it, it's probably just a personal variation on normal. Everyone is different, and something that we seem to be losing touch with in our current society is that THAT IS OK.
written by Amy Beatty, WTM forum
This was not written by me, but I felt I should pass it along to anyone who might identify with it or have comment on its contents. It was posted on a homeschool message board by a mom of a child on the Autism Spectrum. I thought this was a very well thought out, understandable explanation of what Asperger's Syndrome can be like.
----------
Asperger's Syndrome is a neurological condition and can affect anything related to the nervous system including cognitive and sensory functions. Nobody knows what causes it yet, and it manifests somewhat differently from person to person. It is considered by some to be on the "autism spectrum", and by others to be a separate disorder that has many similarities to autism.
By definition, a person with Asperger's has an average to above average IQ (if it's lower, they get a different diagnosis). People with Asperger's Syndrome characteristically have deficits in social functioning, including odd and inappropriate behaviors, difficulty with non-verbal communication such as body language and facial expression, and can often have a hard time understanding non-literal language such as sarcasm, idioms and figures of speech.
They can also have difficulty understanding the ebb and flow of conversation, tending to "lecture" rather than converse. (One nick-name for the syndrome is "little professor syndrome" because they're very smart and tend to speak pedantically.) They usually have very narrow, focused interests, often in unusual things (sometimes referred to as "obsessions" or "passions", depending on one's attitude about the condition).
Often people with Asperger's also experience the world differently with their senses than most people around them (sensory integration disorder). Again, this differs from person to person, but an Aspie may have an aversion to (or conversely may crave) certain types or intensities of lights, colors, textures, touch, tastes, smells, sounds, and so forth, or may have difficulty sensing where their body is in space, making them fidgety and off balance. Many Aspies also have difficulties with changes in routine because they are already dealing with so much that a surprise can really throw them off their precarious mental balance.
Aspies also often have comorbid conditions such as anxiety, depression, seizures, tics, OCD, ODD, PTSD, ADHD and others that can be diagnosed and treated separately, but which often go undiagnosed because they are just attributed to the AS.
Behavior in an Aspie can be rather complicated to unsnarl, as sometimes "bad" behavior can be a reaction to a painful sensory stimulus, an overloaded nervous system, a "fight, flight, or freeze" response triggered by a social situation they perceive as threatening, or just developmentally delayed impulse control. Developmentally these kids can be all over the chart--it's not so much DELAYED development (though there usually are delays in some areas) as it is UNEVEN development
For example, a 12 yo boy might test out at a 22 yo level in some things and about a 5-7 yo level in others, and all of these can vary depending on whether he's hungry, tired, excited, calm, etc. It can be very confusing for the adults in the scenario when they're dealing with a 6 year old child who can multiply multi-digit numbers in his head and read at a high school level, but isn't yet potty-trained. We tend to think of skills developing more or less in a pattern so that if a child can do X, we should be able to also expect him to do Y, but with Aspies that all goes out the window and you just have to really get to know YOUR child's developmental pattern and roll with the punches.
And sometimes "bad behavior" is just plain old bad behavior too, and the proper response is discipline. But discipline isn't going to help if the problem is sensory. If you take a child who is in pain, say from a too-bright light (which you don't notice, because your nervous system is not oversensitive) and beat him for being in pain, it really only makes things worse, if you see what I mean, and will probably escalate the behavior. And if he is really developmentally much younger than he is in some area, such as impulse control, then it's not really fair to expect him to be able to perform at the same level as other kids his age, and no amount of punishment will speed up the development process, and it may in fact impede it.
Aspies often come across as either the "angel" or the "demon" behavior-wise. This is because different people react differently to being overwhelmed, and Aspies spend a LOT of time feeling overwhelmed. The two most typical reactions for ANYONE who is overwhelmed, not just Aspies, are to either withdraw, or to fight back. The withdrawers get labeled as "good" because they tend to just sit there and be quiet, whereas the fighters get labeled as "bad" because they tend to pitch humongous, out of control fits (aka "meltdowns"). But generally both behaviors are indicative of neurological overwhelm, and it's best to help your child find a happy medium where they are cheerfully engaged in what is going on.
Aspergers is sort of a buffet-style diagnosis, which is one reason it seems so different from person to person. Something I think many people don't realize is that since there's not an actual medical test for Asperger's Syndrome, the diagnosis is really more a way of categorizing people according to behavior than it is an indication that some particular, specific thing is anatomically different. There probably is a consistent anatomical thing (or things) going on, but research hasn't nailed it down yet. So it's a very subjective thing, not like, say Down's Syndrome or Fragile X where you can look at the chromosomes and say "yep, he's got it".
parents should keep in mind too when reading over things like this is that the intensity of the symptoms makes a big difference. A lot of "normal" kids are a little socially awkward or have unusual hobbies, most kids throw tantrums, and some are a little oversensitive to certain flavors or whatever. It's not usually considered a "disorder" unless these "normal" behaviors are taken way to the extreme--to the extent that they interfere with the "normal" functioning of a person. If it's causing serious issues in life, it may be a diagnosable disorder. If you can compensate fairly easily and work around it, it's probably just a personal variation on normal. Everyone is different, and something that we seem to be losing touch with in our current society is that THAT IS OK.
written by Amy Beatty, WTM forum
Thursday, May 28, 2009
Successful school meeting! We're getting somewhere!
Successful school testing meeting!
My husband and I attended a meeting at Ella's school on Tuesday morning with her teacher, her principal, and the special ed resource teacher. Our purpose was to assess Ella's strengths and weaknesses in the classroom and at home, and to specify what areas we feel should be further investigated with educational and psychological testing. I was very surprised at how thorough the meeting was! We see so much more of Ella's tantrums, stress, and lack of age appropriate behaviour at home, that her teacher rarely notices anything out of the ordinary in the classroom. She was very surprised at Ella's recent diagnosis of Asperger's. Ella's principal is an amazing woman. She got her BS in Special Ed, taught for almost 10 years, provided respite care before her kids were born, and has been a principal for a long time. Special ed is her passion. She knows her stuff. As we were going through the questionnaires about Ella's strengths and struggles, the principal would often stop and explain to Ella's teacher that these were things that were indicative of being on the spectrum. She was very gentle, and gave great examples.. it was a good lesson for me in how to educate rather than come off as irritated that you don't believe Ella has Asperger's.
I was most surprised that in her teacher's review of her in general, she said that Ella was a quiet and withdrawn child. No one who has ever met her in her LIFE would say that about Ella. This seems to follow what I have read about girls with Asperger's too, that they tend to hang back on the outskirts of discussion, etc. to pay attention to what others are doing. So this is a side of Ella we have never seen.
In the end, it was decided that Ella would under go what amounts to an educational "full body scan" between now and August. They want to test her IQ, her achievement, her social ability, they intend to give her the WISC, the WIAT, and another Autism Spectrum test as well. The special ed teacher named off several tests, and the principal suggested several more. It was so nice to see that they were so interested in Ella, and they had such nice things to say about her sweet nature, her willingness to follow directions, her willingness to ask for help, they were very very positive. We had homeschooled Ella up until January of this school year, and to be honest, had never thought we would put any of our children in public school. We were shown in several ways why this school is great for her, and have had our decision affirmed several times. It happens to be the year round elementary school where we are districted, and I don't think that was a coincidence either.
Ella will very likely qualify for speech/language help due to her literal/rigid thinking and pragmatics. This may also mean that she secondarily qualifies for OT at school. She will also be able to attend social groups, where I suspect she will fall into the high range of ability.. I am hoping that it makes her feel good about herself that she will be on the outgoing/very verbal end of the social spectrum. I feel like it will be good for the others in there to learn from Ella's realtive social savvy as well.
I would love to hear from other moms of children on the spectrum regarding school testing, IEPs, and what it is like as your child starts getting into adolescence and navigating the new social rules that go along with it. I am so dependent on socialization, and I want to help equip Ella as much as possible with friends who understand, so that she feels understood and validated. She so often cries that I do not understand her. And she's right. But I am learning and reading and researching as fast as I can.
My husband and I attended a meeting at Ella's school on Tuesday morning with her teacher, her principal, and the special ed resource teacher. Our purpose was to assess Ella's strengths and weaknesses in the classroom and at home, and to specify what areas we feel should be further investigated with educational and psychological testing. I was very surprised at how thorough the meeting was! We see so much more of Ella's tantrums, stress, and lack of age appropriate behaviour at home, that her teacher rarely notices anything out of the ordinary in the classroom. She was very surprised at Ella's recent diagnosis of Asperger's. Ella's principal is an amazing woman. She got her BS in Special Ed, taught for almost 10 years, provided respite care before her kids were born, and has been a principal for a long time. Special ed is her passion. She knows her stuff. As we were going through the questionnaires about Ella's strengths and struggles, the principal would often stop and explain to Ella's teacher that these were things that were indicative of being on the spectrum. She was very gentle, and gave great examples.. it was a good lesson for me in how to educate rather than come off as irritated that you don't believe Ella has Asperger's.
I was most surprised that in her teacher's review of her in general, she said that Ella was a quiet and withdrawn child. No one who has ever met her in her LIFE would say that about Ella. This seems to follow what I have read about girls with Asperger's too, that they tend to hang back on the outskirts of discussion, etc. to pay attention to what others are doing. So this is a side of Ella we have never seen.
In the end, it was decided that Ella would under go what amounts to an educational "full body scan" between now and August. They want to test her IQ, her achievement, her social ability, they intend to give her the WISC, the WIAT, and another Autism Spectrum test as well. The special ed teacher named off several tests, and the principal suggested several more. It was so nice to see that they were so interested in Ella, and they had such nice things to say about her sweet nature, her willingness to follow directions, her willingness to ask for help, they were very very positive. We had homeschooled Ella up until January of this school year, and to be honest, had never thought we would put any of our children in public school. We were shown in several ways why this school is great for her, and have had our decision affirmed several times. It happens to be the year round elementary school where we are districted, and I don't think that was a coincidence either.
Ella will very likely qualify for speech/language help due to her literal/rigid thinking and pragmatics. This may also mean that she secondarily qualifies for OT at school. She will also be able to attend social groups, where I suspect she will fall into the high range of ability.. I am hoping that it makes her feel good about herself that she will be on the outgoing/very verbal end of the social spectrum. I feel like it will be good for the others in there to learn from Ella's realtive social savvy as well.
I would love to hear from other moms of children on the spectrum regarding school testing, IEPs, and what it is like as your child starts getting into adolescence and navigating the new social rules that go along with it. I am so dependent on socialization, and I want to help equip Ella as much as possible with friends who understand, so that she feels understood and validated. She so often cries that I do not understand her. And she's right. But I am learning and reading and researching as fast as I can.
Tuesday, May 26, 2009
Talk Back Tuesday
I want to get to know my readers better, and I want to9 try to balance the difficult and personal posts with some lighthearted ones!
If you were to invite five friends or celebrities (or a few of each) to a slumber party at your house tonight, who would you ask to come over and which movies would you rent?
Because they might be fun and might still be into the idea of slumber party, I would invite:
Jennifer Garner (celebrity and mom)
My friend Susan that I went to high school with (and was in choir with) who I am still close to
My friend Ginger in Nebraska because she is incredibly funny
Soliel Moon Frye (celebrity and mom)
My friend Julie who does not get out of her mountain town often enough and I miss her
I would want to rent:
13 going on 30
Serendipity
The Lake House
Pretty Woman
Coyote Ugly
How about you?
If you were to invite five friends or celebrities (or a few of each) to a slumber party at your house tonight, who would you ask to come over and which movies would you rent?
Because they might be fun and might still be into the idea of slumber party, I would invite:
Jennifer Garner (celebrity and mom)
My friend Susan that I went to high school with (and was in choir with) who I am still close to
My friend Ginger in Nebraska because she is incredibly funny
Soliel Moon Frye (celebrity and mom)
My friend Julie who does not get out of her mountain town often enough and I miss her
I would want to rent:
13 going on 30
Serendipity
The Lake House
Pretty Woman
Coyote Ugly
How about you?
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