Friday, November 30, 2012

friday's musings...

things i am loving about this week:

  1. camp fires in our backyard with our nieces and our kids' aunt and uncle :) (this just happened moments ago so it is fresh on my mind)
  2. meaningful conversations
  3. finding the members of our nativity rearranged in interesting locations...right now mary is getting kind of cozy with the shepherd.
  4. oliver jack reading his very first two words through sounding out the letters!  he has been working hard in his lessons for three days now and we are so proud of him...
  5. getting some new contacts...sounds petty...but i loathe my glasses!
  6. messages from friends because they have found something with a mustache on it and it has made them think of harper.
  7. people growing mustaches for harper as a christmas present.
  8. how much harper loves that people are growing a mustache for her as a present...it is really weird...but it will be something she remembers forever and she will feel oh so loved...
  9. giant coke's from mcdonald's. 
  10. coffee
  11. my house decorated for christmastime.
  12. the anticipation of the arrival of our elf Holly Day.
  13. trying to think of meaningful presents for people.
  14. watching my children make gifts for people and put so much thought into each person as they make their gifts.  they truly aren't much but i am blown away by how much thought, effort, and time they put into each gift. 
  15. jade.  i am proud of the girl she is becoming and praying that she will stay strong in this really hard world.
  16. having three different homes in which to celebrate thanksgiving.  it is always a whirlwind time for us but i am so grateful to have so much family surrounding us and wanting us to be a part of their celebration. 
  17. having merriwether come over to our house to spend the night...harper loves her so and i think the boys think she's pretty cool too...and of course i love her too.
  18. oliver jack flashing the camera when jacob took his picture.  i actually have a love/hate relationship with this because i was completely mortified but also completely amazed that he would think of something so crazy.  he truly lives to make people laugh.  our problem is that we laugh a little too often at the wrong things.
  19. having coffee with lori.  we don't do it often but i always relish the time i have to spend with another aspie mama :)
  20. my husband's sweet spirit.  he loves us so much and wants to just spend time with us.  he doesn't want to simply fill time with activities and events to pass the days away until his next work day but he wants to just relish the moments he has.  i love that about him. 

Holidays and Asperger's

one of the groups for mother's with children with asd posted this letter a little while ago and i have thought about it several times since i first read it.  i have mostly thought about it because i have anticipated with nervousness all of the activities that the holidays bring and the behavior that often comes as a sidekick for my oldest son.  i have conflicting emotions about my expectations for calvary's behavior because part of me understands why things are difficult and the other part of me just wants him to behave...you know...to say please and thank you, to not growl and throw himself on the floor at the mere sight of his plate, or mostly just display "common courtesy" to those around.  but sometimes "common courtesy" is far from calvary's concept of common and far from what he is able to access in moments that are created by the excitement and newness of the holidays. 
this letter so perfectly puts into words the experience for calvary that i just thought i would share it here.  so much of calvary's success has been rooted in his work at understanding the world around him AND the people around him working to understand him. 
this letter is written and i am including it here with permission by Viki Gayhardt in the perspective of someone with asd.   her website
 

Dear Family and Friends:
I understand that we will be visiting each other for the holidays this year! Sometimes these visits can be very hard for me, but here is some information that might help our visit to be more successful. As you probably know, a hidden disability called autism, or what some people refer to as a Pervasive Developmental Disorder (PDD), challenges me. Autism/PDD is a neurodevelopment disorder, which makes it hard for me to understand the environment around me. I have barriers in my brain that you can’t see, but which make it difficult for me to adapt to my surroundings.
Thanksgiving and Christmas are two of the roughest holidays for me. With large crowds and holiday shopping, it can be very overwhelming, even a bit scary. When planning a party, remember that with my oversensitive hearing and eye sight, Christmas trees and holiday smells can cause me mild to severe pain or discomfort. If the noises are impossible to control, a personal stereo with headphones set to a safe level for children may help drown out background noise and ease my discomfort.
Sometimes I may seem rude and abrupt, but it is only because I have to try so hard to understand people and at the same time, make myself understood. People with autism have different abilities: some may not speak, some write beautiful poetry, others are whizzes in math (Albert Einstein was thought to be autistic), or they may have difficulty making friends. We are all different and need various degrees of support.
Sometimes when I am touched unexpectedly, it might feel painful and make me want to run away. I get easily frustrated, too. Being with lots of other people is like standing next to a moving freight train and trying to decide how and when to jump aboard. I feel frightened and confused a lot of the time. This is why I need to have things the same as much as possible. Once I learn how things happen, I can get by. But if something - anything - changes, then I have to relearn the situation all over again! It is very hard.
When you try to talk to me, I often can’t understand what you say because there are a lot of distractions. I have to concentrate very hard to hear and understand one thing at a time. You might think I am ignoring you — I am not. Rather, I am hearing everything and unsure of what is the most important thing to respond to.
Holidays are exceptionally hard because there are so many different people, places, and things going on that are out of my ordinary realm. This may be fun and adventurous for most people, but for me, it’s very hard work and can be extremely stressful. I often have to get away from all the commotion to calm down. It would be great if you had a private place set up to where I could retreat.
If I cannot sit at the meal table, do not think I am misbehaving or that my parents have no control over me. Sitting in one place for even five minutes is often impossible for me. I feel so antsy and overwhelmed by all the smells, sounds, and people — I just have to get up and move about. Please don’t hold up your meal for me — go on without me, and my parents will handle the situation the best way they know how.

Eating in general is hard for me. If you understand that autism is a sensory processing disorder, it’s no wonder eating is a problem! Think of all the senses involved with eating AND all the complicated mechanics that are involved. Chewing and swallowing is something that a lot of people with autism have trouble with. I am not being picky — I literally cannot eat certain foods since my sensory system and/or oral motor coordination is impaired.
Don’t be disappointed if Mom hasn’t dressed me in starch and bows. It’s because she knows how much stiff and frilly clothes can drive me buggy! I have to feel comfortable in my clothes or I will just be miserable.
When I go to someone else’s house, I may appear bossy and controlling. In a sense, I am being controlling, because that is how I try to fit into the world around me (which is so hard to figure out!) Things have to be done in a way I am familiar with or else I might get confused and frustrated. It doesn’t mean you have to change the way you are doing things — just please be patient with me and understanding of how I have to cope. Mom and Dad have no control over how my autism makes me feel inside.
People with autism often have little things that they do to help themselves feel more comfortable. The grown-ups call it “self-regulation,” or “stimming.’ I might rock, hum, flick my fingers, or any number of different things. I am not trying to be disruptive or weird. I am doing what I have to do for my brain to adapt to your world. Sometimes I cannot stop myself from talking, singing, or doing an activity I enjoy. The grown-ups call this “perseverating” which is similar to self-regulation or stimming. I do this only because I have found something to occupy myself that makes me feel comfortable. Perseverative behaviors are good to a certain degree because they help me calm down.
Please be respectful to my Mom and Dad if they let me “stim” for a while, as they know me best and what helps to calm me. Remember that my Mom and Dad have to watch me much more closely than the average child. This is for my own safety and to protect your home and possessions. It hurts my parents’ feelings to be criticized for being over-protective or condemned for not watching me closely enough. They are human and have been given an assignment intended for saints. My parents are good people and need your support.
During the holidays, the average household is turned into a busy, frantic, festive place. Remember that this may be fun for you, but it’s very hard work for me to conform. If I fall apart or act out in a way that you consider socially inappropriate, please remember that I don’t possess the neurological system that is required to follow some social rules. I am a unique person — an interesting person. I will find my place at this celebration that is comfortable for us all, as long as you’ll try to view the world through my eyes!
written by Viki Gayhardt — singer, songwriter, and parent of two children with autism

Thursday, November 15, 2012

fridays musings...

 here are the things i am loving about this week...

  1. when the kids come to my room in the morning they hand me my glasses and slippers.  it is like having a really well trained dog. :)
  2. calvary has just discovered his love of recreational reading...be still my heart.
  3. wednesday. it is the only day throughout the week that we do not have something going on during the evening. 
  4. fort building.
  5. calvary and harper sleeping in the fort together.  many things make my heart swoon with this one...calvary broke the OCD tendency to need to sleep in his own bed despite whatever fun may be available.  and on top of that he invited harper AND oliver jack to join him.  oliver jack just couldn't make it :)
  6. homeschooling.  i love basically every aspect of it.  we are in the honeymoon phase i believe but right now the kids are growing closer, we are staying busy, and overall life is positive and happy.
  7. teaching bible to my kids.
  8. hearing my children pray.
  9. my kids doing chores in the morning. 
  10. watching finley and oliver jack make up their beds.  so funny.  they stand on their beds and pull the covers up to the pillow as hard as they can.  it reminds me that they are still so small.
  11. oliver jack and calvary being "best buds".  i never thought they would be able to play together like they are now.  such a wonderful place to be.
  12. kyle missing us while he is at work.  i am so loving that i married a man that wants to be home with his family.
  13. my new christmas plates and cups. 
  14. oliver jack loving vegetable soup and telling me that i "make the best hobo soup"....thanks?
  15. instagram...i love taking pictures, being inspired by other pictures, and mostly the overall positive vibe that the people i see radiate...i know that there are negative corners, but it is so much less whiney then other social networks.
  16. hearing finley identify shapes.  all of sudden this week she started identifying hearts, ovals, hexagons, triangles, and circles....she is harper's greatest student ;)
  17. my friend's children...we became friends because our children were in kindergarten together and the added bonus is that our children have become fast friends. 
  18. peppermint sticks covered in chocolate...yum.
  19. having tea parties with my children and using the tea set that was my granny's.  every time i bring the pieces out my mind floods with images of thanksgivings and christmases past.  it makes me miss her but in a happy, warm way.  i know it makes my children remember her as well...maybe one day they will be using these tea cups with their children and retelling the stories i've told. 
  20. being reminded why i blog.  i am loving that i remembered that my goal for this blog was to preserve the moments of our life for us.  the everyday....the beautiful...and the not so beautiful.  i want my children to remember just how sweet life has been...

Saturday, October 27, 2012

Thursday, October 11, 2012

teaching moments with calvary...

over the past week i have been trying to be diligent about taking pictures and making tangible notes about the interesting moments i have with calvary as his teacher.  these moments are easy for me to forget because we move in and out of them with fluidity but yet they are all so profoundly part of what makes calvary so uniquely calvary...i always go back to that egg reading a book because all of our moments with calvary are similar to that one.  we see the world one way and he sees it another.  once he lets me in on how he sees the world, it makes perfect sense...and i can see it...but i would have never thought it before his explanation.  that being said, i kept forgetting the funny moments we were having so i decided that i would try and remember to make a note and go back and take a picture of the moment so that i could tell kyle.
 
so this week we were reading a little story about the seasons creatively titled "Seasons"...i cannot remember who wrote the short story but i will try and go back and include that information later. anyway, we were breezing through the narrative and calvary came to this page:
 
 
 
once he got to this page he just started laughing.  i asked him what was so funny and he responded, "'animals will look for spring'", more laughter, "you can't just find spring!".  oh calvary...it is so interesting to me how deep "literal" thinking stems.  most of the time i think of it in terms of idioms and sarcasm but even this little phrase is a hiccup for calvary.  i had to explain to him that the author meant that the animals will start looking for the signs of spring...not actually spring all bundled up in a package hidden under a pile of snow.  he knew that was a silly idea, but he also thought that is what the author meant.  we had a little laugh thinking about silly animals looking for spring. 
 
 
this next picture still blows my mind because it both amazes me of calvary's attention to detail and it illustrates perfectly how rigid he can be in his thoughts.  i handed him his math work book and told him that he needed to do a few problems and this is one of the problems he was asked to solve:
 
 
he took one look at the problem and said, "i can't do that problem."  i assured him that it was well within his realm of capability and i read the problem to him.  after i finished reading, he looked at me and said, "i can't do this problem because angelfish would never be in a tank with goldfish.  goldfish can't live in saltwater."  well then.  of course.  i am sure that the writers of the first grade curriculum intended for the 6 year olds to catch on to that and answer that the question was invalid.  he kept telling me that "0 goldfish would be in the tank" and i kept assuring him that he just needed to pretend like they could be.  eventually, as is obvious by the completed work, he did actually do the problem. 
 
 
this next one is a little more common for us and a little harder to follow.  but yesterday we were reading in his science book about bamboo.  calvary really likes science and he loves "real photographs" and this selection was particularly interesting to him.  we read through the whole selection and when we got to the caption that reads "some bamboo plants can grow taller than a giraffe" calvary just looked at the two pictures in amazement.  and then he said, "in the dr. seuss foot book it says, '24 feet' but this picture says 25 feet"...
it took me a few minutes to realize how his brain was connecting because seriously, i cannot remember the last time i read the dr. seuss foot book.  but once i realize that the caption sparked his memory to that book i went off to find the book and see what he was talking about. i eventually found the book buried beneath a pile of books in his room (who knows how long ago he last read the book himself) and there it was...
 
 
this picture of some seussian drawing with 24 feet...
 
 
it may not be interesting to other people but my brain doesn't connect like that...across time and subject...but all the information in his brain is just sitting there.  ready to be accessed at any given point.  i find myself awestruck by how remarkable his memory is and also how concrete his language is.  for me, abstraction is a part of life.  i have been trained to analyze meaning and possible meaning in language to the point where i rarely see anything as literal.  yet, calvary has a difficult time seeing anything beyond what is there.  we read a story about a hat the other day.  all these animals were trying to wear the hat and it was either too big or too small for everyone except for the last animal.  on the last page all the animals were dancing and cheering and the mouse was wearing the hat.  i asked calvary all the questions where the answer was written directly in the text and he had no problem answering.  the last question was, "why are the animals happy on the last page" to which he responded, "how do i know why they're happy!?!?!". and then he threw the book and hid under the desk.  he couldn't connect the dancing animals to being happy about the hat fitting the mouse.  yet, he connect the phrase 24 feet and 25 feet across two unrelated books, two unrelated subjects, and two completely unrelated times.  it boggles my mind. 
 
what a gift it is to have a refreshingly new way of seeing the world.  it is not always easy for him as evidenced by his frustration with questions that ask him to infer details about emotion. it is not always easy for me because i know that language and learning only gets more and more abstract the older that he gets and it is my job to help him prepare for that transition.  but, it is a gift.  5 out of the 6 people in this house see the pictures and the question the same way...and he offers a different perspective and it is like scales fall from our eyes and we are able to see the world as a new and different place.  hopefully, i can be successful in helping him also see the world the way that others see it so that he too can appreciate a different perspective...

Wednesday, October 3, 2012

"high functioning"...

this term is really a wolf parading in sheep's clothing...(this is actually a phrase calvary would have an incredibly difficult time processing and understanding)...but the image actually works here. 
i have been processing my emotions towards all things autism for quite sometime now but this issue of "high functioning" is one that seems to perplex me the most.
i mean, shouldn't it be a good thing that calvary is referred to as "high functioning" to outsiders and casual passer-bys?
i think so.
but why, then, does it bother me? 
i clearly do not want my child to be viewed as having certain limitations.  i want the best for him.  i want a perfectly "typical" life for him. 
but...it really, really, really hits a nerve every time i hear:

"well, he must be very high functioning."
"i would have never guessed..."
"he seems perfectly normal to me..."

i know that everyone that says these things are well meaning.  i know that they are simply stating what they believe that i want to hear. 
but i don't know how to respond...

should i say, "thank you?"
because to me, saying thank you, implies that i would somehow not be pleased if he didn't appear to be "normal".
i don't want calvary to overhear me say thank you and believe then that i wish that he was anything other than what he is. 
when someone says that he doesn't seem autistic and they mean it as a compliment underhandedly insults him as someone who is actually indeed autistic. 

i have worked very hard to help ensure that calvary never sees his autism as a handicap.  i want for him to know that he is awesome. but all of that is undermined when the ability to appear normal is what is his greatest autistic feat. 

the truth is calvary is not normal.
he is smarter than average.
he is more detailed than average.
he has an ability to do things on computer games and video games that most adults cannot.
he sees patterns and puzzles in everything.

i don't want to take that away from him. 
and even though there are some awesomely non-normal things about calvary there are some horribly non-normal things about him as well...
and if i was to be honest, it irks me when that is not recognized as well.
parenting calvary is tough.  it is harder than parenting all three of our other children all together.  it takes more emotionally and financially.  and although he may pass for a typical child there are battles that we have fought that most people have not. 

it somehow takes something away from me when someone looks at me as if we have made a mistake or the doctors (multiple) have made a mistake in the diagnosis.  all of the battles...all of the meltdowns...all of the anxiety (his and ours)...all of the social struggles...all of the moments where communication is completely lost...all of these moments are lost and erased the moment someone looks at me like we are wrong. 

we've worked hard at making social outings successful.  we have worked hard at helping calvary deal with his anxiety.  and even harder at helping him deal with aggression and irritability. 
so, it is a wolf in sheep's clothing to hear that calvary is surprisingly autistic at moments because of course i want for his social outings to be seamless.  but my goal is never to help him "appear normal" as if that is the statue of our limitation...

i am not even sure that this makes sense now that it is written down.  i was hoping that i could make something coherent out of my inner turmoil with the term if i started writing but i am not sure i accomplished that.  but its out at least...right?
sigh. 

Sunday, September 16, 2012

school at home...

well, it seems as if school is on its way...we have made it through the first few weeks and are on lesson 20 in our curriculum...
20 lessons.
i cannot believe that we have started and finished 20 days of school!
i contemplated all the potential catasrophies of this set up and i am happy to say that we have not experienced any of those...the scariest of which included total mutiny, children dressed up like pirates, and kyle and i tied up with rope with duct tape across our mouths.
this post has taken me a little long to write because i didn't want to speak prematurely about how wonderful this all has been but i finally came to the realization that waiting for some sort of inevitable failure is such a pessimistic and grosely ungrateful way to live. 
tomorrow may be terrible.  i am not naive enough to think that if i say that homeschooling has been wonderful and without trouble that it means everyday must follow suit.  i also hope that writing this now will help me remember the good on the days that i most need it.

one of the things that i worried about most was the children's willingness to work with me.  it seemed that everyday homework after school last year was a fight.  no one wanted to do their work.  i had to cut playtime short or delay playtime altogether just so we could get the task done.  harper was the worst.  she would sit at the table and just stare at the pages, or roll around on the floor picking up her pencil for the 1 millionth time (the purposefulness of this was not lost on me), or just cry about how it was too hard and too much... but my reality has been much different than the school experience of last year.  which leads me to believe that my presuppositions about school were well founded.  it was just too much. 

so here is how our school days look now:

7:00 am--i wake up and do my quiet time and get ready. 
7:30 am--the kids get up and start rolling in to my room.
8:00 am-- we eat breakfast
8:30 am--the kids get dressed, make their beds, and brush their teeth while i clean up from breakfast.
9:00 am--we start school with bible. 
9:30 am--harper starts math and calvary starts reading.  i give instruction to harper, do a couple of problems with her, and then give her the assignment.  while i teach harper, calvary usually entertains finley and oliver jack with a book or the sensory rice.  then i read with calvary. 
10:00 am--i give harper instruction for her science or social studies while calvary gets the little kids started with a show.  then i give calvary his instruction for science or social studies. 
10:30 am--we go outside for a snack and playtime.  they like to ride their bikes and we also play games like mother may i or some sort of made up game involving a ball.
11:00 am --harper does her phonics and spelling.  and calvary finishes up with math.
11:30 am--calvary, oliver jack, and finley usually play with play-doh, stamps, puzzles or go upstairs and play together while harper works on her last couple of assignments.  she usually has an assignment that is once a week like art, gods of greece, or poetry that she works on during this time. 
12:00 -- harper finishes up with reading.  we read together and then she does her final assignments while the other kids help me prepare lunch. 
12:30pm--lunch
1:00 pm--nap for finley and oliver jack and playtime for harper and calvary.  they have been doing all sorts of things during this time.  they have made comic books, played iPods, played memory, and watched TV among other things.
2:30/3:00--wake up and snack time.
3:30--lots of friends have been stopping by to play which has been great or we go to the park or run errands.
4:30/5:00--start cooking dinner
6:00-7:30--playtime with all of us since kyle is home
7:30--get ready for bed and watch a show
8:00/8:30--bedtime

since i do a homeschool charter school funded by the state we have a few online classes.  calvary has three 30 minute classes while harper has one 30 minute class and two 1 hour classes a week.  they have one each on tuesday, wednesday and thursday.  it is really awesome to see them in their little classes and using the computer to learn skills that correlate with what we are doing together.  and since monday and friday are free i turned monday into our home ec day where were do some sort of sewing project, cooking, or art project and i turned friday into science and nature day where we do some sort of experiment or nature study. 

i am not sure how long we will stay with the homeschool charter school because it is so much structure for this free spirit...but that is exactly why we need it now.  it has been the perfect transition for us from a traditional brick and mortar school to a homeschool family. 
i also love that our whole life no longer revolves around school.  our life now focuses on learning, each other, and others to a whole new level.  i am grateful for this opportunity and i pray that it is an opportunity that my kids continue to enjoy in the years to come.