If you think you know a lot.... spend some time with an Aspie. We know very little, but they are happy to fill in our gaps... even gaps we didn't know we had. I was "enlightened" over the weekend, while enjoying some football with Rachel.
We were watching (had on) the Alabama/ Arkansas football game Saturday. Rachel asked if Bama was playing the "boats"... I said they are playing Arkansas...she said "arks are boats"! Asperger moment.
Later, she informed me there are 2 kinds of "refs". Silly, silly me... I assumed she was thinking a football ref, a basketball ref, etc. But of course, that would be our logic...I questioned what her 2 refs were... "Obviously there's the kind that wear black and white and whistle, AND the kind that float on water...like in the pool". (ref/raft... all the same!?!)
There, I just shared my new knowledge. And maybe I'm trying to think of the positives, instead of the reality of her student teacher walking her to my car, yesterday. I could tell from both of their faces that something was not right. Apparently, they had to physically remove the scissors from her during art class. She refused to stop & turn them in at the end of class. To us, she's not following the rules, but she sees it that she had not finished her job (art project). Anyway... the teacher said "she (Rachel) got really upset & caused quite the scene, before & after they took her scissors".
Well, it's another day... many opportunities for???? who knows????
Tuesday, September 28, 2010
Sunday, September 19, 2010
Honest Prayerful Song- please listen!
I'm still crying after listening to this honest song. Please take a few minutes and listen to the words. It was as if the writer read my mind. Just click on the link and it should come up. Don't forget your hankie, especially if you are a parent of a special child or love one (child &/or parent). May God continue giving us courage, energy, wisdom & close friendships. It can be a very lonely world for the caregivers...
leisahammett.typepad.com
Thank you to the songwriter, as well as the brave friend that shared her soul to the writer! You speak/sing for so many!
Friday, September 17, 2010
Aunt Rachel
Another week has come and gone, with a couple of treasures to share with you...Birthdays are different for Asperger's. Rachel looks forward to hers, as much as anybody, BUT....her concept of time is almost nonexistant, so far as measuring it.
About 2 1/2 years ago, I asked her if she thought it would be fun to be an aunt. Emily and Sean had shared with me their exciting news of a baby on the way. Rachel's other sisters were very excited, but Rachel was VERY hesitant. I explained to her that Emily & Sean were going to have a baby, so I would become a grandmother (now, happily known as "YaYa"). That was somewhat confusing, but she was adamant about not wanting to be an aunt. After further conversation, and a couple of days of processing allowed and careful thought, I asked her again why she did not want to be an aunt. She said she was ok being a girl, but didn't think she ever wanted to be a "bug". That's right, she thought she was going to turn into an ant, because Emily was having a baby. Once she understood that "Aunt" is just a title, she was completely on board and excited about Jakson's arrival!
As a matter of fact, she was so excited, I almost regretted sharing the news with her. She continually asked me, if he was here yet. So, since her birthday is September 10th, I thought it might help her to know he was not due until after her birthday. That seemed to satisfy her, until....September 11th. I went in to get her up and she wanted to see Jakson. I told her he was not yet here and she was devastated, that I had "lied and promised he would be here after her birthday"...which of course meant one minute after midnight to her. We had another anxiety filled week, before precious Jakson came into our world on September 18, 2008.
We all adore him! Happy Birthday precious Jakson! Two is going to be great!
About 2 1/2 years ago, I asked her if she thought it would be fun to be an aunt. Emily and Sean had shared with me their exciting news of a baby on the way. Rachel's other sisters were very excited, but Rachel was VERY hesitant. I explained to her that Emily & Sean were going to have a baby, so I would become a grandmother (now, happily known as "YaYa"). That was somewhat confusing, but she was adamant about not wanting to be an aunt. After further conversation, and a couple of days of processing allowed and careful thought, I asked her again why she did not want to be an aunt. She said she was ok being a girl, but didn't think she ever wanted to be a "bug". That's right, she thought she was going to turn into an ant, because Emily was having a baby. Once she understood that "Aunt" is just a title, she was completely on board and excited about Jakson's arrival!
As a matter of fact, she was so excited, I almost regretted sharing the news with her. She continually asked me, if he was here yet. So, since her birthday is September 10th, I thought it might help her to know he was not due until after her birthday. That seemed to satisfy her, until....September 11th. I went in to get her up and she wanted to see Jakson. I told her he was not yet here and she was devastated, that I had "lied and promised he would be here after her birthday"...which of course meant one minute after midnight to her. We had another anxiety filled week, before precious Jakson came into our world on September 18, 2008.
As you can see, Rachel is a proud Aunt to her beloved Jakson. The pix was taken in July, 2010.
Friday, September 10, 2010
Happy 10th Birthday!
Almost exactly 10 years ago, I held Rachel for the first time. She was born at 7:00 am. It is now 6:55, as I type and she's preparing for another day at school. In some ways, it is hard to believe she is turning 10.... in other ways it seems like she should be much older. It's been both a long and short time to me. The years are gone, but the days, sometimes, seem to last forever. If you love an Aspie (person with Asperger's), you understand.
She just informed me she has a science test today. I asked her if she needed to work on it, and she replied "it's at school, not here." So I had to rephrase it, do you need to study to prepare for it?... she answered "I don't know.. I didn't write anything down about it". Some things get easier, other things don't seem to change, or even deteriorate... But we are in this together and God will see us through.
Happy Birthday Precious Rachel! She's taking cupcakes for her classmates. Someday, I'll get brave and try to have a party for her. She has never had one...
She just informed me she has a science test today. I asked her if she needed to work on it, and she replied "it's at school, not here." So I had to rephrase it, do you need to study to prepare for it?... she answered "I don't know.. I didn't write anything down about it". Some things get easier, other things don't seem to change, or even deteriorate... But we are in this together and God will see us through.
Sunday, September 5, 2010
FYI- Mayo's info on Asperger's
Some have inquired about Asperger's, so I thought I would share a basic overview with you, from the Mayo clinic. It's symptoms & severity vary from person to person. And of course, other conditions affect/are affected by Asperger's. (Rachel has a seizure disorder, ADHD, OCD, IED, PANDA Syndrome.....along with Asperger's. Incidentally, it's not uncommon for these children to have more than one condition.)
Asperger's syndrome via Mayo
Definition
Asperger's syndrome is a developmental disorder that affects a child's ability to socialize and communicate effectively with others. Children with Asperger's syndrome typically exhibit social awkwardness and an all-absorbing interest in specific topics.
Doctors group Asperger's syndrome with other conditions that are called autistic spectrum disorders or pervasive developmental disorders. These disorders all involve problems with social skills and communication. Asperger's syndrome is generally thought to be at the milder end of this spectrum.
While there's no cure for Asperger's syndrome, if your child has the condition treatment can help him or her learn how to interact more successfully in social situations.
Symptoms
Signs and symptoms of Asperger's syndrome include:
Engaging in one-sided, long-winded conversations, without noticing if the listener is listening or trying to change the subject
Displaying unusual nonverbal communication, such as lack of eye contact, few facial expressions, or awkward body postures and gestures
Showing an intense obsession with one or two specific, narrow subjects, such as baseball statistics, train schedules, weather or snakes
Appearing not to understand, empathize with or be sensitive to others' feelings
Having a hard time "reading" other people or understanding humor
Speaking in a voice that is monotonous, rigid or unusually fast
Moving clumsily, with poor coordination
Having an odd posture or a rigid gait
Asperger's syndrome via Mayo
Definition
Asperger's syndrome is a developmental disorder that affects a child's ability to socialize and communicate effectively with others. Children with Asperger's syndrome typically exhibit social awkwardness and an all-absorbing interest in specific topics.
Doctors group Asperger's syndrome with other conditions that are called autistic spectrum disorders or pervasive developmental disorders. These disorders all involve problems with social skills and communication. Asperger's syndrome is generally thought to be at the milder end of this spectrum.
While there's no cure for Asperger's syndrome, if your child has the condition treatment can help him or her learn how to interact more successfully in social situations.
Symptoms
Signs and symptoms of Asperger's syndrome include:
Engaging in one-sided, long-winded conversations, without noticing if the listener is listening or trying to change the subject
Displaying unusual nonverbal communication, such as lack of eye contact, few facial expressions, or awkward body postures and gestures
Showing an intense obsession with one or two specific, narrow subjects, such as baseball statistics, train schedules, weather or snakes
Appearing not to understand, empathize with or be sensitive to others' feelings
Having a hard time "reading" other people or understanding humor
Speaking in a voice that is monotonous, rigid or unusually fast
Moving clumsily, with poor coordination
Having an odd posture or a rigid gait
Saturday, September 4, 2010
Missing in Action!
So, it all got more serious over the summer... with age, comes new resposibility.... With Asperger's, not happenin' so easily! Rachel was enrolled in, NOT summer school, but the "politically correct": CSI camp (aka summer school). It is a different staff, and children from all over the county are her new classmates. Needless to say, she was not a happy camper. That dreaded word CHANGE! Like I warned you, CHANGE is a 4 letter word for Asperger's! One day, I get a call from the principal, letting me know that Rachel slipped out of class & had been missing for more than 15 minutes. They found her hiding in some bushes near the pick-up lane. Up to this point, she spent time crying and just blanking out when things were tough at school, then coming home and taking her frustrations out on me.
Just a couple of weeks ago, she was not where she was supposed to be after Sunday School, before worship. I felt fairly sure she was ok, but my heart did react with that frightened drop, until we found her. She had gone with 2 other girls somewhere else in the building. I asked her why she didn't meet me at the usual point. She told me "two girls asked me to come with them". Of course I asked her why she went and she told me she "didn't know what to say to them". So we had ANOTHER conversation about saying NO! We've had it countless times, but obviously, it isn't working. Unfortunately common sense is not a trait of Asperger's. That is not a negative remark, it's simply stating a fact. It's a real problem, especially in this day and age! It's not Mayberry in this time & town.
So last Thursday, it was time for her muchly loved Lyrical Dance class. I almost always stay in the lobby just to keep tabs on her and in case she has a seizure. I was able to park right in front of the building. I told Rachel I might run an errand, but I would be back before class was over. (She has taken dance classes for 6 years, same South Daytona Park's building, same wonderful teacher, Miss Kristi, mostly the same students/parents. No changes, so it's very comfortable to her, and her favorite activity of the week.)
I decided, since it was so pleasant, I would just read in the car. What could go wrong? I was right there. After classtime, I was waiting for her to come out, while watching the other students leaving with their parents/siblings. After a few minutes, I went in to pull her away from Miss Kristi. (We love Miss Kristi...will post on her blessing our lives later!) As I approached the building, Miss Kristi was on her way out the door when she found out Rachel had slipped over to the playground after class, instead of finding me or waiting in the lobby. Once again, my heart sank, blaming myself for not sitting in the lobby. We found her spinning on a gravitational spinning seat on the playground. Makes sense in that she loves to spin. But the park is not the safest area for a child like Rachel (or any child) to be alone. I had to physically stop her spinning and then the talk & questions began. I asked her if she saw me in the car, to which she said NO. Then I asked her if she had looked for me & she replied no, again. There is an innocent behavior with Asperger's, that can be extremely dangerous.
The responsibility of parenting a child like this is overwhelming. Much of my energy and thought used to go to being an advocate for her and dealing with daily activities at home, doctors.... Now that she is getting older, looks like we've come to a new stage of simply protecting 24/7 along with the other responsibilities. If you see me looking a little weary....you can understand, I hope. I would love to hear, from anyone else, ways to make this journey easier. Simple things, like a childsitter are even near to impossible. To go to a "life-celebration" in NY this summer, I had to fly in Rachel's sister, Emily, from Texas. Sometimes, I long for a break! I miss Mayberry... We need a village!
Just a couple of weeks ago, she was not where she was supposed to be after Sunday School, before worship. I felt fairly sure she was ok, but my heart did react with that frightened drop, until we found her. She had gone with 2 other girls somewhere else in the building. I asked her why she didn't meet me at the usual point. She told me "two girls asked me to come with them". Of course I asked her why she went and she told me she "didn't know what to say to them". So we had ANOTHER conversation about saying NO! We've had it countless times, but obviously, it isn't working. Unfortunately common sense is not a trait of Asperger's. That is not a negative remark, it's simply stating a fact. It's a real problem, especially in this day and age! It's not Mayberry in this time & town.
So last Thursday, it was time for her muchly loved Lyrical Dance class. I almost always stay in the lobby just to keep tabs on her and in case she has a seizure. I was able to park right in front of the building. I told Rachel I might run an errand, but I would be back before class was over. (She has taken dance classes for 6 years, same South Daytona Park's building, same wonderful teacher, Miss Kristi, mostly the same students/parents. No changes, so it's very comfortable to her, and her favorite activity of the week.)
I decided, since it was so pleasant, I would just read in the car. What could go wrong? I was right there. After classtime, I was waiting for her to come out, while watching the other students leaving with their parents/siblings. After a few minutes, I went in to pull her away from Miss Kristi. (We love Miss Kristi...will post on her blessing our lives later!) As I approached the building, Miss Kristi was on her way out the door when she found out Rachel had slipped over to the playground after class, instead of finding me or waiting in the lobby. Once again, my heart sank, blaming myself for not sitting in the lobby. We found her spinning on a gravitational spinning seat on the playground. Makes sense in that she loves to spin. But the park is not the safest area for a child like Rachel (or any child) to be alone. I had to physically stop her spinning and then the talk & questions began. I asked her if she saw me in the car, to which she said NO. Then I asked her if she had looked for me & she replied no, again. There is an innocent behavior with Asperger's, that can be extremely dangerous.
The responsibility of parenting a child like this is overwhelming. Much of my energy and thought used to go to being an advocate for her and dealing with daily activities at home, doctors.... Now that she is getting older, looks like we've come to a new stage of simply protecting 24/7 along with the other responsibilities. If you see me looking a little weary....you can understand, I hope. I would love to hear, from anyone else, ways to make this journey easier. Simple things, like a childsitter are even near to impossible. To go to a "life-celebration" in NY this summer, I had to fly in Rachel's sister, Emily, from Texas. Sometimes, I long for a break! I miss Mayberry... We need a village!
Thursday, September 2, 2010
More Rachelisms
As I was growing up, and even now, we talked of the "old days", "long ago" or "back in the day" or something similar. It's all relative, of course, but that is just the way we refer to ...earlier. Rachel never uses that terminology. She is such a precise follower of language & rules, that she calls everything that we would call earlier, simply..... "PAST TENSE"! She reminded me that she "didn't like the 'past tense', because we didn't have Rosebug (our dog)." Sometimes, many times, I think simpler is the clearest.
Another of her unique perspectives came back at Christmastime. We were in Nashville with my parents (her beloved Nana & Papa). I had gone for my morning shower in their back bathroom. Rachel uses the "pink" bathroom off the hall. Mom said Rachel was kind of wandering the house before she stated: "Nana, mom must be in a 'non-room'." She had looked in every room she knew of, & instead of saying she couldn't find me, she just noted I was in a non-room.
And long before the I-phones, I-pads... Rachel used her original term "I-Plan" instead of either idea or plan, a simple combination of the two. She still refers to I-plans at times. Hey, maybe she is a future Bill Gates! ;0)
Yes, she keeps me on my toes! and helps broaden my thinking & language skills!
Another of her unique perspectives came back at Christmastime. We were in Nashville with my parents (her beloved Nana & Papa). I had gone for my morning shower in their back bathroom. Rachel uses the "pink" bathroom off the hall. Mom said Rachel was kind of wandering the house before she stated: "Nana, mom must be in a 'non-room'." She had looked in every room she knew of, & instead of saying she couldn't find me, she just noted I was in a non-room.
And long before the I-phones, I-pads... Rachel used her original term "I-Plan" instead of either idea or plan, a simple combination of the two. She still refers to I-plans at times. Hey, maybe she is a future Bill Gates! ;0)
Yes, she keeps me on my toes! and helps broaden my thinking & language skills!
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