I have not mentioned that in addition to Ella's Apergers and Sensory Processing related diagnoses, she also has an "unspecified seizure disorder" that started in toddler hood. She has been seizure free for about 4 years, which is AWESOME, but by no means do I assume that her seizures will never return. She had fewer than 10 total in the course of 3 years. Three were simple partial with secondary generalization seizures, 2 were complex partials, 2 were grand mal/tonic clonic, and 1 was a series of myoclonic seizures. Because her EEGs and MRIs (even 24 hr video EEG and 48 hr take home EEG) never showed any activity, they told us that her seizure activity must be too deep in the brain for them to pick up. It was very disconcerting. Through all that testing, we found that she had a myelin deficiency, which may or may not contribute to her sensory issues and her being on/near the autism spectrum.
It is an unspeakably frightening thing to watch your child having a seizure. You never know how long it will last, sometimes they cannot tell you afterward how they are feeling because of garbled nonsense speech or lack of ability to speak, and many times there is no memory at all of events leading up to the seizure or of the seizure itself. It is one of those totally powerless parent moments where you watch and pray. I was blessed to have majored in Special Education and Psychology in college, and had some familiarity with seizure types when Ella started at 14 months. It did not make it less scary, but having that knowledge from school did make it less intimidating.
Last night, I had a friend on twitter whose child had a seizure. Her daughter had been diagnosed as having absence seizures already, but this was a new kind of seizure and it terrified her mom. I knew about these different types, and was able to explain and reassure to her that the kind her daughter had experienced was a complex partial seizure, and describe the impaired consciousness that my daughter had experienced when she had hers as a preschooler. It reinvigorated my desire to research and help others connect on the subject of epilepsy.
Which, very happily, leads me to talk to you about Greg Grunberg, one of my favorite celebrities. Greg has done work on movies as well as tv shows, but I first discovered him in Alias. I was thrilled when he showed up in Heroes, which is probably my favorite tv show. Greg is also in a really AWESOME band called Band from TV . The lineup is mindblowing: Hugh Laurie from House on piano, Greg on drums, Teri Hatcher on vocals, Bob Guiney from the Bachelor on vocals, Jesse Spencer from House on violin... The band plays gigs to raise money for charities, and Greg's charity of choice is one close to his heart, The Epilepsy Foundation . Greg's son Jake has epilepsy, and he has further created this fabulous website called Talk About It . While its focus is definitely epilepsy, the encouragement is there to talk about special needs. Talk about disability/different ability. Take away the fear and normalize these conditions so there is less misinformation, less looking out of the corner of the eye, less whispering while staring. I would encourage you to check out Band from TV and Greg's website. He is a multi-talented guy with a huge heart, and is working so hard to make the world a more accepting place for his son.
My daughter, Ella, would recommend two books on the subject of normalizing special needs: Don't Call Me Special and All Cats Have Asperger Syndrome
I would love to hear from you, and please pass my post and its information on to anyone you know who has a child with epilepsy!
Showing posts with label aspergers. Show all posts
Showing posts with label aspergers. Show all posts
Saturday, September 5, 2009
Wednesday, July 29, 2009
What do you do when a teacher insults your Aspie's ability?
Yesterday was Ella's second day of 4th grade. She attends a year-round school (pretty common in our area), and attends 9 weeks on, 3 weeks off with a long break around Christmas. She got in the car yesterday afternoon and did not seem herself. I asked her to tell me about her day, and she gave a brief and un-detailed overview. She is just about as verbose and enthusiastic as her mother, so I knew something was not right. When she got to a particular point in her description of her day, she told me that she didn't think she could tell me about it because it might make her too sad. I asked her why, and she said that she had gotten her feelings hurt by her teacher.
I asked if she would feel better if I were holding her hand while she told me, and she said yes.
This is the conversation as best as I can recall. I wrote it down right after we got home.
Ella: "We were in the media center doing testing for reading groups, and everybody was coloring on coloring sheets while we waited for our turn. My teacher saw my coloring page and told me "I don't allow that kind of coloring in my class.".
Me: "Were you being noisy and scribbling fast?"
Ella: "No."
Me: "Were you angry and coloring loudly?"
Ella: "No."
Me: "Let me get this straight. You were coloring a coloring page, and not drawing an abstract picture of something she didn't like?"
Ella: "We were coloring two coloring pages that the teacher gave us to do while we waited for our turn, we were't drawing."
Me: "Well, I can't understand what she meant by now allowing "that kind of coloring" in her class. What did you think she meant?"
Ella: "I don't know what she means either. I was coloring like I always color, the way you taught me, I didn't know there was another way to color."
Me: "I don't think there is another way to color, Ella. I am sorry she said that to you."
(Hmm. I just can't figure out how to not interpret this a different way than it seems. Let's see if I can get any more information about the setup.)
Me: "Were you sitting with other people when she said this? Can you explain to me what she scene was, so I can picture it in my head?"
Ella: "Yes, I was sitting with other people at a table. My teacher had come from the testing table and told everyone to be quiet. She walked over to my table and looked at my paper, and said "I don't allow that kind of coloring in my class"
Me: "Did she talk to anyone else that you could see about their paper?"
Ella: "No."
Me: "Were there any instructions about how to color the pages?"
Ella: "No."
Me: "Ella, how did you feel when she said that?"
Ella: "I felt sad. I felt like she said my coloring was messy and bad. I tried to color over it and fix it after she left my table. I just don't understand what I did wrong!"
Me: " I can understand why you are frustrated and upset. I can understand why you felt judged. It was not helpful for her to tell you that she didn't "allow that kind of coloring" if she didn't explain what kind of coloring she did expect, and exactly what you were doing wrong that made her say something."
Ella: "Will you talk to her and find out what I did wrong?"
Me: "Yes, I can e-mail her or call her, but I want to talk to Papa and Grandma first, so they can help me know what to say, okay?"
She agreed, and went to play with Maddie. I sat down and wrote the conversation out, and then called my husband. He was livid. He was angry particularly at the abstractness of what the teacher said, and her lack of pointing out what she was doing wrong, and what she wanted. He and I both assume that she has read Ella's file and knows she has delays with fine motor control.. if not that she has Asperger's and has trouble with inference.
For you teachers out there, I am certainly aware that I got only Ella's side of the story. I am interested in hearing her teacher's side of the story, and this is the email I sent, after talking to my mom, who calmed and focused me:
I am sorry to be emailing you twice in the course of a week, I have not been known to be a helicopter/hovering mom! I like that we can email teachers, but I don't tend to use it very often.
------
Hi Mrs. B:
The purpose of this email is that Ella recounted a conversation she had with you today, and I wanted your take on it, if you had a few minutes.
She said that during the time the class was in the media center, they were allowed to color a few coloring pages. She said that you came to talk to her at her table and said words to the effect of,"I don't allow that kind of coloring in my class.".
Ella did not know what you meant by saying that. She interpreted your words to mean that her coloring was not good enough and she felt insulted. She was upset while telling me the story, and wanted to hold my hand while she told me.
I know your day was long and full, and you might not even remember the conversation. But I would be grateful if you would share your take on this interaction and let me know What you were trying to get across to her.
--------------
I wanted to get across what I heard, how Ella was feeling when she told me the story, and I tried to be low key and conversational, showing that I was not jumping to any conclusions. The hardest part was being brief.
Now, if she did say this, if she has something to say about Ella's lack of motor skills appropriate for a 4th grader, and she has read Ella's file... well.. we are going to use some stronger words.
She was so sad, and I can't imagine how that must have made her feel to be both sad and confused by a new teacher on the second day. It sure doesn't set a good tone for the rest of the year!!!
I will update you when I hear back from the teacher. I guess I will call her tonight.
------
Still haven't heard from the teacher. Here is Ella's interpretation of what the coloring page looked like and how she colored it. I still can't get past her teacher having this discussion about coloring page busy work in the 4th grade.
I asked if she would feel better if I were holding her hand while she told me, and she said yes.
This is the conversation as best as I can recall. I wrote it down right after we got home.
Ella: "We were in the media center doing testing for reading groups, and everybody was coloring on coloring sheets while we waited for our turn. My teacher saw my coloring page and told me "I don't allow that kind of coloring in my class.".
Me: "Were you being noisy and scribbling fast?"
Ella: "No."
Me: "Were you angry and coloring loudly?"
Ella: "No."
Me: "Let me get this straight. You were coloring a coloring page, and not drawing an abstract picture of something she didn't like?"
Ella: "We were coloring two coloring pages that the teacher gave us to do while we waited for our turn, we were't drawing."
Me: "Well, I can't understand what she meant by now allowing "that kind of coloring" in her class. What did you think she meant?"
Ella: "I don't know what she means either. I was coloring like I always color, the way you taught me, I didn't know there was another way to color."
Me: "I don't think there is another way to color, Ella. I am sorry she said that to you."
(Hmm. I just can't figure out how to not interpret this a different way than it seems. Let's see if I can get any more information about the setup.)
Me: "Were you sitting with other people when she said this? Can you explain to me what she scene was, so I can picture it in my head?"
Ella: "Yes, I was sitting with other people at a table. My teacher had come from the testing table and told everyone to be quiet. She walked over to my table and looked at my paper, and said "I don't allow that kind of coloring in my class"
Me: "Did she talk to anyone else that you could see about their paper?"
Ella: "No."
Me: "Were there any instructions about how to color the pages?"
Ella: "No."
Me: "Ella, how did you feel when she said that?"
Ella: "I felt sad. I felt like she said my coloring was messy and bad. I tried to color over it and fix it after she left my table. I just don't understand what I did wrong!"
Me: " I can understand why you are frustrated and upset. I can understand why you felt judged. It was not helpful for her to tell you that she didn't "allow that kind of coloring" if she didn't explain what kind of coloring she did expect, and exactly what you were doing wrong that made her say something."
Ella: "Will you talk to her and find out what I did wrong?"
Me: "Yes, I can e-mail her or call her, but I want to talk to Papa and Grandma first, so they can help me know what to say, okay?"
She agreed, and went to play with Maddie. I sat down and wrote the conversation out, and then called my husband. He was livid. He was angry particularly at the abstractness of what the teacher said, and her lack of pointing out what she was doing wrong, and what she wanted. He and I both assume that she has read Ella's file and knows she has delays with fine motor control.. if not that she has Asperger's and has trouble with inference.
For you teachers out there, I am certainly aware that I got only Ella's side of the story. I am interested in hearing her teacher's side of the story, and this is the email I sent, after talking to my mom, who calmed and focused me:
I am sorry to be emailing you twice in the course of a week, I have not been known to be a helicopter/hovering mom! I like that we can email teachers, but I don't tend to use it very often.
------
Hi Mrs. B:
The purpose of this email is that Ella recounted a conversation she had with you today, and I wanted your take on it, if you had a few minutes.
She said that during the time the class was in the media center, they were allowed to color a few coloring pages. She said that you came to talk to her at her table and said words to the effect of,"I don't allow that kind of coloring in my class.".
Ella did not know what you meant by saying that. She interpreted your words to mean that her coloring was not good enough and she felt insulted. She was upset while telling me the story, and wanted to hold my hand while she told me.
I know your day was long and full, and you might not even remember the conversation. But I would be grateful if you would share your take on this interaction and let me know What you were trying to get across to her.
--------------
I wanted to get across what I heard, how Ella was feeling when she told me the story, and I tried to be low key and conversational, showing that I was not jumping to any conclusions. The hardest part was being brief.
Now, if she did say this, if she has something to say about Ella's lack of motor skills appropriate for a 4th grader, and she has read Ella's file... well.. we are going to use some stronger words.
She was so sad, and I can't imagine how that must have made her feel to be both sad and confused by a new teacher on the second day. It sure doesn't set a good tone for the rest of the year!!!
I will update you when I hear back from the teacher. I guess I will call her tonight.
------
Still haven't heard from the teacher. Here is Ella's interpretation of what the coloring page looked like and how she colored it. I still can't get past her teacher having this discussion about coloring page busy work in the 4th grade.
Saturday, July 25, 2009
BlogHop '09 Introduction to me and my family
I am way way far down the BlogHop '09 links list, so thank you VERY much for coming to visit me!
I am a brand new blogger (which may or may not be painfully obvious), and I started in earnest not long after my oldest daughter was diagnosed with Aspergers. Entries about her will figure largely into my blog, but there are plenty of other things I am passionate about and want to blog about.
My blog title references the fact that I am pursuing harmony in my family and balance in my life as a mom, wife, daughter, friend, housekeeper, cook, laundress, blogger, and twitter-er.
My brief bio:
nearly overwhelmed mom of 4 trying to stay ahead of the chaos
a perpetually late, mostly disorganized, schedule-hating stay home mom
a homeschooler
geek wife
sci-fi fan
a singer
an amateur genealogist
n ENFP
avid reader/bibliophile
a researcher of pregnancy, childbirth, breastfeeding, circumcision, and vaccination.
a 3 time homebirther
a good listener
an out-of-the-box thinker
a special needs mom and a spectrum mom
an advocate for my kids' special needs
I was recently described as being a tough cookie with a big heart
I think that just about covers it!
I love social media. I have been online since 1993, first on IRC in chatrooms, then on email lists, then on discussion forums. Twitter has given me a new level of making connections, and linking me to some wonderful blogs. I think I've been a social media addict for a LONG time. Doesn't hurt that I am outgoing and love to talk!
I love to help people connect. I thrive on making deep connections with others, talking about difficult subjects and learning from them, helping others find support systems and likeminded friends. Not surprisingly, my college major was special ed and psychology.
I met my husband on the internet in a Christian, college-age chatroom, and he bought our wedding rings and my engagement rings five weeks after we started dating. He proposed to me on the anniversary of the day we met in person and in the place where he told me he wanted to marry me during that first weekend we met in person. He is a stable force in my life, generous with his praise (which is good since my "love language" is words of affirmation!), a man of integrity, and the head of our household. I gladly submit to him because he "gets it" and cherishes my submission to him. The books "Reforming Marriage" by Doug Wilson and "Love and Respect" by Emerson Eggerichs have been very influential in our married life.
Our children are Ella (9), Maddie (6), Annelise (3), and Teddy (1). While Maddie has ADHD and as a result requires some extra effort to channel and restrain and focus.. Ella takes the lion's share of our efforts to parent. My husband has said that she takes about 50% of our focus, and the other 3 children don't come close to the other %50 percent all together.
I hope you will let me know that you've come to visit my blog, and I hope you will check back again. Please visit the links on the right side of my blog, I would love for you to meet the people that inspire me to share and connect!
My family:
I am a brand new blogger (which may or may not be painfully obvious), and I started in earnest not long after my oldest daughter was diagnosed with Aspergers. Entries about her will figure largely into my blog, but there are plenty of other things I am passionate about and want to blog about.
My blog title references the fact that I am pursuing harmony in my family and balance in my life as a mom, wife, daughter, friend, housekeeper, cook, laundress, blogger, and twitter-er.
My brief bio:
nearly overwhelmed mom of 4 trying to stay ahead of the chaos
a perpetually late, mostly disorganized, schedule-hating stay home mom
a homeschooler
geek wife
sci-fi fan
a singer
an amateur genealogist
n ENFP
avid reader/bibliophile
a researcher of pregnancy, childbirth, breastfeeding, circumcision, and vaccination.
a 3 time homebirther
a good listener
an out-of-the-box thinker
a special needs mom and a spectrum mom
an advocate for my kids' special needs
I was recently described as being a tough cookie with a big heart
I think that just about covers it!
I love social media. I have been online since 1993, first on IRC in chatrooms, then on email lists, then on discussion forums. Twitter has given me a new level of making connections, and linking me to some wonderful blogs. I think I've been a social media addict for a LONG time. Doesn't hurt that I am outgoing and love to talk!
I love to help people connect. I thrive on making deep connections with others, talking about difficult subjects and learning from them, helping others find support systems and likeminded friends. Not surprisingly, my college major was special ed and psychology.
I met my husband on the internet in a Christian, college-age chatroom, and he bought our wedding rings and my engagement rings five weeks after we started dating. He proposed to me on the anniversary of the day we met in person and in the place where he told me he wanted to marry me during that first weekend we met in person. He is a stable force in my life, generous with his praise (which is good since my "love language" is words of affirmation!), a man of integrity, and the head of our household. I gladly submit to him because he "gets it" and cherishes my submission to him. The books "Reforming Marriage" by Doug Wilson and "Love and Respect" by Emerson Eggerichs have been very influential in our married life.
Our children are Ella (9), Maddie (6), Annelise (3), and Teddy (1). While Maddie has ADHD and as a result requires some extra effort to channel and restrain and focus.. Ella takes the lion's share of our efforts to parent. My husband has said that she takes about 50% of our focus, and the other 3 children don't come close to the other %50 percent all together.
I hope you will let me know that you've come to visit my blog, and I hope you will check back again. Please visit the links on the right side of my blog, I would love for you to meet the people that inspire me to share and connect!
My family:
Monday, July 6, 2009
Meltdowns and real life coping skills
My parents came to visit this week, and Ella is tracked out from school (year round). She was wonderfully well behaved.. we went to an indoor play space, then McDonalds and played in the play area. Lots of crowds, lots of potential for overload. She was helpful and totally cool all day.
My parents weren't probably out of the driveway, and my husband was brushing her hair. Her hair is very long, and she has some motor coordination issues that prevent her from really doing an adequate job. She started to wail like she was being crucified or drawn and quartered. I gave my husband control of bathing the sweet Teddy fella, and took over hair brushing.
Ella told me she likes it when I brush her hair because I take smaller sections of hair, and that I joke about the rats living in her hair and that they are yelling as I am brushing them out. I asked if she was having trouble brushing her hair like she needed to, and she said yes. I asked her if she wanted me to start taking over her hair brushing twice a day, and she said yes to that too. She asked if I would start doing her body brushing again too. She HATED the Willbarger technique skin brushing that we did when she was having private occupational/sensory therapy. So for her to ask, that was really awesome!
While I was brushing her skin and doing joint compressions, we had this great talk..
Me: "When Grandma and Grandpa left, did you know you were going to lose control?"
Ella: "Yeah"
Me: " Do you sometimes know if you are going to lose it after a hard day at school?"
Ella: "Yeah"
Me: "Because you remember when I told you that when you get in the car and freak out on us, it's like you become a tornado and throw stuff at us with your words? It would be really nice to know that is coming. Because it doesn't happen every time I come get you."
Me: " How do you deal with being stressed at school?"
Ella: "I am silent most of the day. I can't cry unless I get really hurt or something."
Me: "Yeah, your teacher did mention that during our meeting with her and the principal and the school psychologist"
Me: "How do you feel when you can't cry or lose control at school when you are stressed out?"
Ella: "Like I am in a cage"
(I felt really sad when I heard that!!!)
Me: "When you know you have had a stressful day, and have been keeping quiet through hard stuff, and you KNOW you are going to lose it in the car or right when you get home, can you think of something you might be able to tell me to let me know you might have a meltdown?"
Ella: "I think I feel a storm coming on."
Me: "I think that's a great idea! If you feel like you're getting close to a meltdown, can you try to remember to say that? Add I will try to ask that if it looks like you're starting to lose it, ok?"
Ella:" OK mama, thanks for brushing me!"
Ella with her stuffed cat, her skin brush, and a big smile!
I love when we have the opportunity to talk about meltdowns when she is NOT melting down. I think she did some great communicating, and we made a great connection and a plan for how to work the issue of meltdowns. I am really pleased!
Have you had a conversation with your child about how to cope with things in public, or with behaviours at home when you are not in the moment? When you can plan ahead for how to handle those situations? How did that go for you? Was it something that adapted well, or am I in for a defiant, tearful "No! I DON"T feel like there's a storm coming on! Leave me alone!!!!" the next time I try this??
My parents weren't probably out of the driveway, and my husband was brushing her hair. Her hair is very long, and she has some motor coordination issues that prevent her from really doing an adequate job. She started to wail like she was being crucified or drawn and quartered. I gave my husband control of bathing the sweet Teddy fella, and took over hair brushing.
Ella told me she likes it when I brush her hair because I take smaller sections of hair, and that I joke about the rats living in her hair and that they are yelling as I am brushing them out. I asked if she was having trouble brushing her hair like she needed to, and she said yes. I asked her if she wanted me to start taking over her hair brushing twice a day, and she said yes to that too. She asked if I would start doing her body brushing again too. She HATED the Willbarger technique skin brushing that we did when she was having private occupational/sensory therapy. So for her to ask, that was really awesome!
While I was brushing her skin and doing joint compressions, we had this great talk..
Me: "When Grandma and Grandpa left, did you know you were going to lose control?"
Ella: "Yeah"
Me: " Do you sometimes know if you are going to lose it after a hard day at school?"
Ella: "Yeah"
Me: "Because you remember when I told you that when you get in the car and freak out on us, it's like you become a tornado and throw stuff at us with your words? It would be really nice to know that is coming. Because it doesn't happen every time I come get you."
Me: " How do you deal with being stressed at school?"
Ella: "I am silent most of the day. I can't cry unless I get really hurt or something."
Me: "Yeah, your teacher did mention that during our meeting with her and the principal and the school psychologist"
Me: "How do you feel when you can't cry or lose control at school when you are stressed out?"
Ella: "Like I am in a cage"
(I felt really sad when I heard that!!!)
Me: "When you know you have had a stressful day, and have been keeping quiet through hard stuff, and you KNOW you are going to lose it in the car or right when you get home, can you think of something you might be able to tell me to let me know you might have a meltdown?"
Ella: "I think I feel a storm coming on."
Me: "I think that's a great idea! If you feel like you're getting close to a meltdown, can you try to remember to say that? Add I will try to ask that if it looks like you're starting to lose it, ok?"
Ella:" OK mama, thanks for brushing me!"
Ella with her stuffed cat, her skin brush, and a big smile!
I love when we have the opportunity to talk about meltdowns when she is NOT melting down. I think she did some great communicating, and we made a great connection and a plan for how to work the issue of meltdowns. I am really pleased!
Have you had a conversation with your child about how to cope with things in public, or with behaviours at home when you are not in the moment? When you can plan ahead for how to handle those situations? How did that go for you? Was it something that adapted well, or am I in for a defiant, tearful "No! I DON"T feel like there's a storm coming on! Leave me alone!!!!" the next time I try this??
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, 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.
Thursday, May 14, 2009
Ella was Diagnosed with Aspergers Today
I am dead dog tired, but wanted to let you know that we got the results from her autism spectrum testing back. I feel more validated and relieved than upset, especially since my husband would probably also fall under that diagnosis.
Here is the summary of information from her psychologist, let me know if you have any questions for me. I am lucky to have formed these few complete thoughts.
We had an initial visit with her that lasted 90 minutes where she mostly talked to us together, but talked a little to Ella by herself and about a half hour to me by myself. Dr. H also spoke to Ella's 3rd grade teacher.
Communication
Expressively:
has an age appropriate vocabulary
her vocal tone, articulation, and cadence of speech seem normal
Ella takes longer than usual to form her thoughts into words
Ella has difficulty extracting the most relevant information to tell about an experience or story
Ella has difficulty organizing a story into a beginning, middle, and end that makes sense
Ella uses some emphatic and descriptive gesture to enrich the quality of her communication
Ella's facial expression is congruent with content of what she is saying, but her facial expression seems pretty basic (i.e. happy, sad) and lacks subtlety and variability many children her age might demonstrate.
In a test where she was asked to tell a story from a picture book, Ella had difficulty telling about what was happening, as opposed to labeling items in the pictures.
Receptively
Ella seems to understand most language
Given her mastery and use of language, she seems to struggle with the inferential components of receptive language (e.g: she mentioned that she used to have kittens. One night, she fed the kittens some pizza crusts. I asked her why she got rid of them, and she thought I was talking about getting rid of the pizza crusts, not why she got rid of the kittens)
Ella has difficulty interpreting non-literal language (sarcasm), tending to take it literally
Ella has difficulty processing multi-step instructions, needing them to be broken down into individual steps
Socialization
Play:
Ella reports rich, imaginative play with peers
In the ADOS adminstration, Ella struggled considerably with imaginative play. She appeared shy and inhibited, which was a sharp contrast to her almost overly-comfortable behaviour in the office setting (i.e: coming in and taking her shoes off, playing with her toes). She would follow my lead in play; but would not use her characters to enrich or build on the play. Her engagement appeared reluctant, which does not seem to be consistent with her interactional style in other ways.
Ella reports make believe play in which she takes the role of a character
During the ADOS administration, Ella was bashful about acting out a scene, even after it was demonstrated to her by the examiner.
Social Interaction
Conversation tends to be on Ella's terms. She can talk at length about topics of interest to her and responds to questions and comments nicely; however she fails to follow up on conversational leads, (e.g: I have dogs too, and they do things that are really funny!"). At those times, Ella appears uncomfortable as though there is some recognition that she should say or do something; but does not know what.
Ella has friends with whom she gets along well; but struggles to identify characteristics that make a friend a friend. She seemed to find this question stressful. She initially stated that children of similar age are friends, and then drifted into talking about birth dates. When encouraged to find other reasons, she noted that common interests made a friend a friend.
Ella was able to talk about her emotional experiences (although she appeared to be somewhat uncomfortable and tentative in the interaction); however she struggled to consider how her bahaviour might affect others (e.g.: What do you think you do that might annoy other people?). She could not come up with an answer about herself, instead talking about what her younger sister does to annoy her mother.
Restricted Interests and Repetitive Behaviours
Used to walk on tip toe/toe walking
Unusually focused on dates and birthdates
Transitions were easier as a child,but around age 7, she started having more difficulty with change.. needs a lot of warnings, needs to review expectations, can fall apart if plans change (e.g.puts hands on head as she struggles to think about what else she might eat for lunch of all ingredients are not present for the meal she had planned to have)
Associated Features
Sensory sensitivity
Dislikes sticky hands/fingers
Tags in shirts
Food textures
Clothing Textures
Cognitive Style
Literal Thinker
Difficulties with sequencing and organizing
Detail oriented at the cost of the "whole"
Abstraction, both receptively and expressively
Diagnostic Impressions:
Provisional Diagnosis of Asperger's Disorder
Ella is not a "perfect fit" for an Aspergers's diagnosis. She has some terrific social and communicative skills that are often not seen in children with Asperger's. That said, she has extraordinarily savvy parents who have likely helped her develop strategies to compensate effectively for some areas of weakness. Her deficits in the areas of social communication and flexibility are subtle, but present. It appears most likely that a diagnosis of Asperger's Disorder is appropriate for her; however given her complex developemental history, it would be valuable to view these results within the context of a more comprehensive psychoeducational evaluation to see if there are underlying features of her thinking style that might meaningfully contribute to the diagnostic picture. Barring another more comprehensive explanation for the difficulties outlined above, a diagnosis of Asperger's Disorder appears to be the best fit available.
Other possible diagnoses: Expressive and Receptive Language Disorders, Non Verbal Learning Disorder
Other tests that may be used: WISC IV (Wechsler Intelligence Scale for Children), WIAT II (Wechsler Individual Intelligence Test), DKEFS (Delis Kaplan Executive Functioning Scale), NEPSY (Neuropsychological Test)
Here is the summary of information from her psychologist, let me know if you have any questions for me. I am lucky to have formed these few complete thoughts.
We had an initial visit with her that lasted 90 minutes where she mostly talked to us together, but talked a little to Ella by herself and about a half hour to me by myself. Dr. H also spoke to Ella's 3rd grade teacher.
Communication
Expressively:
has an age appropriate vocabulary
her vocal tone, articulation, and cadence of speech seem normal
Ella takes longer than usual to form her thoughts into words
Ella has difficulty extracting the most relevant information to tell about an experience or story
Ella has difficulty organizing a story into a beginning, middle, and end that makes sense
Ella uses some emphatic and descriptive gesture to enrich the quality of her communication
Ella's facial expression is congruent with content of what she is saying, but her facial expression seems pretty basic (i.e. happy, sad) and lacks subtlety and variability many children her age might demonstrate.
In a test where she was asked to tell a story from a picture book, Ella had difficulty telling about what was happening, as opposed to labeling items in the pictures.
Receptively
Ella seems to understand most language
Given her mastery and use of language, she seems to struggle with the inferential components of receptive language (e.g: she mentioned that she used to have kittens. One night, she fed the kittens some pizza crusts. I asked her why she got rid of them, and she thought I was talking about getting rid of the pizza crusts, not why she got rid of the kittens)
Ella has difficulty interpreting non-literal language (sarcasm), tending to take it literally
Ella has difficulty processing multi-step instructions, needing them to be broken down into individual steps
Socialization
Play:
Ella reports rich, imaginative play with peers
In the ADOS adminstration, Ella struggled considerably with imaginative play. She appeared shy and inhibited, which was a sharp contrast to her almost overly-comfortable behaviour in the office setting (i.e: coming in and taking her shoes off, playing with her toes). She would follow my lead in play; but would not use her characters to enrich or build on the play. Her engagement appeared reluctant, which does not seem to be consistent with her interactional style in other ways.
Ella reports make believe play in which she takes the role of a character
During the ADOS administration, Ella was bashful about acting out a scene, even after it was demonstrated to her by the examiner.
Social Interaction
Conversation tends to be on Ella's terms. She can talk at length about topics of interest to her and responds to questions and comments nicely; however she fails to follow up on conversational leads, (e.g: I have dogs too, and they do things that are really funny!"). At those times, Ella appears uncomfortable as though there is some recognition that she should say or do something; but does not know what.
Ella has friends with whom she gets along well; but struggles to identify characteristics that make a friend a friend. She seemed to find this question stressful. She initially stated that children of similar age are friends, and then drifted into talking about birth dates. When encouraged to find other reasons, she noted that common interests made a friend a friend.
Ella was able to talk about her emotional experiences (although she appeared to be somewhat uncomfortable and tentative in the interaction); however she struggled to consider how her bahaviour might affect others (e.g.: What do you think you do that might annoy other people?). She could not come up with an answer about herself, instead talking about what her younger sister does to annoy her mother.
Restricted Interests and Repetitive Behaviours
Used to walk on tip toe/toe walking
Unusually focused on dates and birthdates
Transitions were easier as a child,but around age 7, she started having more difficulty with change.. needs a lot of warnings, needs to review expectations, can fall apart if plans change (e.g.puts hands on head as she struggles to think about what else she might eat for lunch of all ingredients are not present for the meal she had planned to have)
Associated Features
Sensory sensitivity
Dislikes sticky hands/fingers
Tags in shirts
Food textures
Clothing Textures
Cognitive Style
Literal Thinker
Difficulties with sequencing and organizing
Detail oriented at the cost of the "whole"
Abstraction, both receptively and expressively
Diagnostic Impressions:
Provisional Diagnosis of Asperger's Disorder
Ella is not a "perfect fit" for an Aspergers's diagnosis. She has some terrific social and communicative skills that are often not seen in children with Asperger's. That said, she has extraordinarily savvy parents who have likely helped her develop strategies to compensate effectively for some areas of weakness. Her deficits in the areas of social communication and flexibility are subtle, but present. It appears most likely that a diagnosis of Asperger's Disorder is appropriate for her; however given her complex developemental history, it would be valuable to view these results within the context of a more comprehensive psychoeducational evaluation to see if there are underlying features of her thinking style that might meaningfully contribute to the diagnostic picture. Barring another more comprehensive explanation for the difficulties outlined above, a diagnosis of Asperger's Disorder appears to be the best fit available.
Other possible diagnoses: Expressive and Receptive Language Disorders, Non Verbal Learning Disorder
Other tests that may be used: WISC IV (Wechsler Intelligence Scale for Children), WIAT II (Wechsler Individual Intelligence Test), DKEFS (Delis Kaplan Executive Functioning Scale), NEPSY (Neuropsychological Test)
Subscribe to:
Posts (Atom)
Posts
