Sunday, December 30, 2012

Naughty or Nice?

Christmas just happened and sure enough the jolly old Santa dropped a bag of lego loot at our house and threw in a couple of board games just to jazz things up a bit.  In the past I welcomed Santa in and I was happy to let the magic happen, but this year I have a slight problem with the big guy.  See, he made my daughter really worried, and he made my son doubt his "niceness."  You don't mess with my kids, even if you are Santa Claus.

  Normally I wouldn't mind a little motivation for my kids to behave but this seemed over the top.  My girl already worries enough about doing something wrong. Perfect is what she strives for and I try my hardest to get her to take life a little less seriously.  So, when mega toy loot was riding on doing the right thing, she got very anxious and worried. She didn't have a scale of what EXACTLY is naughty and what EXACTLY is nice, so she assumed the worst.  Perfection, she even looked back three years prior counting her errors.

Then comes my impulsive, hyper-happy boy.  His heart is good, he is full of love, always looking for ways to help others and spread cheer.  Also, lots of being told "no" "slow down" "you need to think first." "go to your room."  So, if the world of Santa is black and white, naughty or nice, then he is sure to do way more wrongs than right and so must belong on the naughty list.  I tried to assure him that Santa would look at the bigger picture and see how kind and full of love he is.  He seriously doubted me.
 
So, I guess I'm not sure about Santa's list anymore.  I think he needs to learn a little compassion and a lot of grace.  All those Christmas songs threatening that he knows "if you've been good or bad so be good for goodness sake!"   We can't forget that this is a season of celebrating the gift of grace that began with the birth of Jesus. Let's focus on the joy, and the love. After all if we aren't doing that at Christmas then when are we doing it?

Love and Grace Everyday, and especially at Christmas.

Thursday, December 6, 2012

Shhhh...

Some mornings, actually most mornings I am running around my house, attempting to feed the kids, pack lunches, get ready, and frantically sounding off tons of requests all on one sentence. I am asking hurried questions like, what do you want for snack today? Did you brush your hair? go feed the dog, oh and did you pack your homework? get your socks on right now and oh your food is ready so go sit down and eat really fast so we aren't late, where are my keys!?   Then, then my daughter sometimes just stares blankly and suddenly says, "huh? What? I forgot what I was supposed to be doing? what did you say?"  
Then I begin to get frustrated and say something like "YOU NEED TO LISTEN!  WHY WON'T YOU LISTEN TO ME?!!!"

The truth is that she is listening.  She is hearing more than I could ever imagine and my non-stop dialog isn't allowing her to complete the first task I requested or answer the first question. Then throw in all the other noises that happen in a household in the morning (dishes clanging, washing machine running, brother banging into things, etc) and you have a very overloaded kid.  

My husand posted this video on his facebook page about a week ago and I have been wanting to post it here but a cold got the best of me and knocked me into a world of watching movies on netflix and feeling exhausted.   I am back... and with me I bring this video.  

I think for me watching it was another reminder to slow down and be silent sometimes because the world is loud enough for my sweet girl. 

Please watch
Sensory Overload (Interacting With Autism Project)

Wednesday, November 14, 2012

10 things

Welcome,
Many of you will be finding this for the first time.  This has been my journal for the past few months as I sort through my thoughts and flush out my feelings.  I kept it to myself, mostly because I was still processing things and also because I wasn't sure it was something to share at all.   It's personal, it's my life, my husband's life, my children's life, spilled out on a blog and mostly un-edited.  It is truth, feelings, and not always pretty or simple.  Some days it might be "fine" and other days it's a mess.

I decided to share it though. To share the fine, and the mess.  Share it because there are days when I stumble onto someones blog, or a book, or an article that makes me feel less alone.  Some things that gives me hope, or joy, or a simple acknowledgement that life is sometimes hard..  Momastary is one of those sites, the author, Glennon reminded me that I love to write and so I started writing. Next I remembered that sharing was also something that I loved to do.  Sharing with other parents who are desperately trying to raise their children up in the way that they should go.  So, I decided that now that I am showing this to family and friends (instead of mostly random people who stumble upon it) I will do something that Glennon from Momastary did.  I will write 10 things about me.  She wrote 20, but most of you know me and I am lazy so I will try to do 10 that you don't know. Some of you know me too well for any surprises but welcome anyway.

Once you read my 10 things, please look at my older post, especially my first few as they are the most special to me.  I wrote under a different account for awhile so it may show up a little funny.   If you have friends who have children on the autism spectrum please share my blog. I am not telling people how to parent, or saying my way is right.  I am just stumbling along and trying to figure it out as I go. I would love for this to be a place of community.   If it turns out that nobody has anything to say then I will just continue writing for myself because I love journaling.  I can't promise it will be everyday, because life is busy and and I am a scatter brained procrastinator, but when I show up it will be with all my heart. Also, I must apologize for grammar and spelling errors.  There will be many. 

Ten Things about Me

1. I once lived without electricity, and while I would surely miss the internet, I really do miss the flicker of a kerosene lamp and the sound of my father's acoustic guitar strumming. 

2. My beautiful nine year old daughter was officially diagnosed with Aspergers Syndrome this summer, but I have known in my heart longer than that.  It has opened doors, windows, and stairways into amazing discoveries for our family.

3. I have a dog as big as a pony. Really.

4.  I love Jesus and it will come up here.  I am not trying to be preachy or make you uncomfortable.  He is my strength, courage, and heart and without Him I would be a terrible mess. 

5.  My Son is basically Tigger with a heart of gold.  Some say ADHD (attention deficiit/hyperactivity disorder), some say SPD (sensory processing disorder) I suspect a little aspie (aspergers) but whatever he is I say he is Joy!  OK, maybe explosive joy with a side of ummmm exhausting.

6.  My husband, the talkative, super-outgoing, non-stop energy guy.... is an Aspie too! He is just VERY good at acting like a neurotypical.  We are still untangling all the mysteries that happen when a neurotypical (non-aspergers) and an Aspie fall in love and get married, and have kids.   He has helped me be more organized and I have helped him with....something?  Two halves make a whole and that must have been the idea between matching us up.  End of story. 

7.  I want to learn to play the banjo.  Every time I listen to Mumford and Sons (a lot recently/love the new CD) I just crave to play it.  I have zero musical talent but I do own a banjo.   Anyone want to give me lessons?

8. When I clean the bathrooms I feel as if I have climbed the top of Mount Everest and I am always shocked that nobody presents me with a medal or award of some sort.  (Mom's of boys you MUST know what I am talking about.)  My husband usually does thank me however, but still...I want an AWARD!!!

9.  I am super frugal and mostly shop at thrift stores.  I also have crazy good luck and find wonderful things and almost always what I need.  I do this not only to save money, but also to reduce waste.  AKA I'm sort of a hippie.

10.  I have a heart for the homeless, and orphans, and pets without homes.  I am pretty sure I would take them all into my home except that we don't have that big of a house and my husband seems to be more of a rational person.  (Like I said, we were put together for a reason.)  My dream someday is to adopt or foster children but for now I am fully challenged and blessed with the two that we have. 

Monday, October 1, 2012

Gathering information and reflecting

Over the past weeks I have been coming to the computer to write and then realizing that I wasn't ready yet.  I have been reading some books on ADHD.  I have been thinking about what this all means.  I have also been working with my son on some challanges he is having now that the first grade adventure has started. 
  The first book I read was by Dr Barkley and it was a bit depressing, I thought it would be more fun because of that great big dog Barkley on Sesame Street.  Turns out it wasn't the same dog and in fact it was a human!   The book did have a practical  tool at the end, the suggestion and explanation of having a points system to help with behavior.  I downloaded an App called Kidzpoints to help me track it because I am very likely to misplace a chart, and forget to put poker chips in a jar (as it suggested.)  We have done it for a week and it seems to help with a few things, like calm hallway behavior.  I would say the program and my son are still in the honeymoon phase and he may decide it's for the birds next week.  I hope not.

I also found a book called The Gift of ADHD.  From this I found some interesting things, I also found a lot of anti-medical worldview.  I am not all about drugging my kid but I thought the book was kind of rude about it.  There was hope in the book though, and something else happend.  I recognized myself in some of it.  It put everything in a positive way and explained how people with ADHD feel the feelings of others very intensely.  Most people feel it a little but but for ADHD folk, they feel it much more.  It said that children with ADHD  feel  the emotions of others but they don't really know where it is coming  from, and then they act it out to try and understand it.  So say, student Susie is having a bad day and very angry, if they sit next to her they will start to feel her anger.  They actually feel it is there own anger and they might just throw a fit and act angry to understand it. 
I thought that was cool.  I thought about how my husband and my daughter cannot "feel" others emotions at all, and how I have trouble sitting near certain people at church if they are going through a hard time because I feel the emotion so much that it is overwhelming.  I am also drawn to comfort them, but some days if have my own things going on it's just too intense to handle. I usually push myself to handle it anyway because if I feel that much, they must be feeling so much more and need a hug. 

After my information gathering was done (is it ever really done?)  I went into reflective mode.  I have been going through the daily routine and pondering in the back of my head what all of this means.  We are still the same family that we were two years ago but we also have a better sense of self, and it's amazing how we all fit together.  Some of us can tune in to emotional needs, but when we become overly emotional and flipping out we have other members of our family who can keep a cool head and tell it like it is without feeding off our energy. 

At the end of my pondering I came up with this:  We are who we were made to be.  We don't have disorders or syndromes (although the labels will help us to find tools to make ourselves better people. )  We are simply people, who happen to be neurologically wired differently from the majority of humans.  We are part of a body.  The body has many parts, and if everyone was a foot then we wouldn't be able to think, if everyone was a head we wouldn't be able to step forward.  We were created to have these "quirks" for a reason. 
As with anyone, neurotypical (normal) or autistic, we all need to grow and change and become the very best version of ourselves we can, but we must make sure we still remain ourselves through that process. 

I would never want my son to lose his zest for life, his enthusiasm, or his energy.  I would however, prefer he learn to sit down during circle time instead of running around the room tackling people.    I would never want my daughter to lose her ability to notice tiny details and give amazing insights.  I would like her to be able to have more back and forth conversations though, so that she could hear other peoples insights as well.   I wouldn't want to lose my ability to feel peoples emotions and give them comfort, Although I would really  like to stop losing my keys, train of thought, coffee mug, and car in the parking lot.  

Sunday, August 26, 2012

Temple Grandin

This post is going to be super short.  I just wanted to say that last night I watched the movie Temple Grandin with Claire Danes.  (She did a great job, btw)   If you have a child with Aspergers or Autism and you don't have it yourself I would urge you to watch the movie.  They did a wonderful job putting you into the perspective of Temple and seeing the world through her eyes.  You can read books, but this gives you the complete visual.  Also it's an amazing and true story of what someone with Autism is capable of doing if they are supported and encouraged! 
I am still debating showing my daughter, I will for sure when she is older but some scenes are kind of intense. 
If you saw the movie I am curious what you thought of it.  What do you think of the squeeze machine?  Would you ever get or make one for your child?

Wednesday, August 22, 2012

Muck

You know those times when you are blissfully running across a lush meadow, looking ahead at the place heading and then you realize that the meadow is full of soggy water and you end up with your foot sinking down into muck and before you realize it the next one has gone down too.  Bewildered and not sure what to do next.  You know you have to get yourself out of there, but how to do it without losing a shoe or falling on your face.  Plus, once you get out you of the muck you still have to trudge forward through the rest of the soggy mess to reach your intended destination.  So, here I am, standing in the muck and refusing to go forward, too tired to assess the situation, but also too hopeful to just lay down and give up.

For over a year I have been learning everything I could and reading every book I could get my hands on about aspergers to help my daughter.  Meanwhile, for the past six months I was also learning much about Sensory Processing Disorder to help my son.  I felt pretty good about it, like we had a path and a plan for my son.  He was doing Occupational Therapy once a week and making progress.  I am thankful for that progress, and thankful for the tools and skills that he gained from OT.  Our therapist was truly amazing!  Then, we were told that there wasn't much more OT could do and we should go get yet another evaluation.

After an evaluation with a team of people, plus tons of questionnaires, and a follow up I was told my son has ADHD.   Now, somehow this is hard to take, much harder than when I learned my daughter had aspergers. You hear about wonderful people with autism, geniuses.  I am pretty sure you never hear anything great about ADHD people.  (If you do please leave me a comment!)  I know ADHD is the most common misdiagnosed thing in children.  I also know my son can pay attention.  I also don't know anything about ADHD.  I have started trying to learn a little bit.  I got the book that the Dr.recommended and read 7 pages, then I stopped.

  I just feel like it was surprise muck.  Surprise muck that I am not even sure is real.  Although, the little I have read is making sense.  It just seems so big.  I made the mistake of reading what ADHD looks like as a teenager and it scared the hell out of me!  So I stopped reading and here I stand, knee deep in muck trying to figure out my next move and sort of feeling like maybe I will just stand here.


Tuesday, August 14, 2012

Our Best

This past weekend my husband went out of town on a camping trip and left me to hold down the fort.  This included a shameful first night when, after hearing a story at the park about "Honey Boo Boo" the tiara wearing toddler,  Out of curiousity and half dis-belief, I made my way to YouTube.
I ended up watching an entire episode of Toddlers In Tiaras.  I don't have cable and normally wouldn't watch something like that but... well...I will blame the lack of adults at home and call temporary insanity.

I thought that I would just watch a short clip and move on with my life.  I couldn't though, I kept watching.  Not so much like watching a train wreck, but rather watching someone wreck a train on purpose. I was trying to figure out what is going on inside the train wreckers head that makes them think this is a good idea to wreck the train.  Plus, not just one train, a whole room of trains, and everyone is in agreement that the trains need to smash for the good of the train.

It would be easy for me to think that the mothers of the tiara girls are horrible parents.  I have to say that my gut reaction was just that.  I had that little thought in the back of my head though telling me to find the good.  Because really, the mothers are going out of there way, changing the entire famililes lifestyle, sacrificing money and time because they are trying to do there best.  Trying to give their child the best life they can.  It just happens that the idea they have for "best possible life" is MUCH different then the idea I have.
They wouldn't understand why I won't allow my children the thrill of drinking soda and downing pixie sticks (yes, they give there children oodles of pixie sticks to show "personality.")  These women would think perhaps that I am being cruel by not allowing my children unlimited screen time, but not allowing them to sign up for tons of activities.  I am sure I do things very different and they might see that as bad.  Maybe though, they would act better than I did and they wouldn't judge me at all.

I sat on my sofa, and a squirmed, and I dropped my jaw, and I judged, and then I remembered that I am not supposed to judge.  So then I looked for the good.  I found it too, deep under the insanity of a pageant.  I found the hope for happiness, for a better life, for a shared dream, for a smile. It is easy to see the worst in people.  I have friends who parent very differently than me, they give their children soda and spank them when they misbehave.  Because I am around them in person it's easier to see the good, to see their heart.  The television show is not made to help us be compassionate.  The producers pick people who will shock and cause judgement, so that we will all gossip about it.  It's very hard to see someones heart through edits that accentuate the worst moments.  There was a small clip though, where one of the mother's doubted for a brief second what she was doing, but then she said she sees her daughter smile and knows she is doing the right thing.  She wants her daughter to be happy, but that glimpse of doubt showed me her heart.  Beneath the layers of our good and failed attempts at parenting lays our heart, and we all have good hearts. 

These women are doing their best.  We are all doing our best to love our children and give them a good life and everyone has a different picture of what that looks like.  We must not judge each other though, it doesn't help anyone or change anything. I won't be watching the show again.  It's too hard not to judge and really what can I gain from seeing it?  Instead I will patiently await the return of Downton Abby and maybe practice my neglected banjo the next time I am bored. 

Sunday, August 5, 2012

Unknowing Teacher

We are all here to teach each other something.  Each one of us has a lesson (many lessons probably) that we will teach others, unknowingly just by being ourselves.  Watching my children this morning reminded me of that.  My children are opposites, a girl and a boy, a sensory sensitive, and a sensory seeker, introvert, extrovert. This is not by accident.  They have been placed with each other, in our family for a very clear purpose (if you ask me, and since it's my blog ...)  They are preparing each other for the world, so that when they step away from the safety of our family they will be ready for those who are different than them, and be able to show them love, even if they don't understand them. 

I tell my children, that they must love each other.  They do not have to like each other at times, but they must always LOVE one another, no matter what.  Also, they have to love everyone else, but it all starts at home, loving each other despite the fact that they are each others biggest challenges most of the time.  

So today, the lesson was being close to people.  My daughter craves personal space and becomes overwhelmed and exhausted and sometimes even in pain when people are too close to her.  A tiny bump feels like a great assult.  In life, we sometimes must be in a crowd, and people are clumsy and bump into you.  So, in her home is the younger brother who's body doesn't feel as much (hyposensitive) so he craves bumping into people, and squishing into them, and being as close and in your face as possible.  According to her he was bumping more than usual and really getting in her face.  She gave me this complaint as "Mom, he is doing that thing AGAIN, a lot more than normal."  I reminded her that he has a reason for doing "that thing" and that I would remind him to tone it down.  "Just as you need space, he needs closeness, you both need to work on a balance."  The speech I have given one thousand times, but they are both starting to be more gentle with each other when it is a problem.

 From each other they are learning tolerance and awareness.  My daughter is learning to tolerate some of her brother's need for contact, and my son is learning to be aware and respectful of her need for space.    He is helping her be able to stand in a crowded room and she is helping him no how to hold back so he doesn't overwhelm everyone he meets.  They both struggle to give each other the things they need and also protect what they need.  It's a dance, a delicate dance that I am so happy they are learning as children.
 
I had to learn this as a married adult living with a introvert much like my daughter, it took me years and sometimes I fall backwards and overload my husband.  Sometimes I forget to push him just a little and feel depleted of the closeness that I crave.  My husband and I learn from each other, just as our children learn from each other.  The way we are as individuals and the fact that we are a family this is not at all by mistake, and we shouldn't give up on people just because they make us uncomfortable. We need to see those different then us as teachers here to help us grow into the people we were meant to be.  Some of their lessons will be easy and some of them might shake us, but the more we show up and try the better we will become. 

Tuesday, July 31, 2012

Open Ears, Open Hearts

We must all support each other, with listening ears, with our time, with encouragement.  I just read the blog over at Momastery and it brought me to tears.  Now, if you go read it today you may think I am nutty and  not cry at all, but it touched me deeply.  I had a very emotional day yesterday as my daughter had her medical evaluation and so maybe that is why, but the thing I heard from Glennon's blog most loud was LISTENING.  Listening is something that we don't do enough of.  Especially if it's something we don't agree with.  We are so quick to tune out or talk over the thing we don't want to hear.  We must listen though, it's how we grow, and how we show respect to our fellow humans.

Listening was huge for me two days ago.  My daughter was about to have her official evaluation that would give access to services that can help her and get them covered by insurance. (Her pediatrician and a psychologist had agreed with me but it wasn't official yet).   I have heard that this process can sometimes turn into a mess if the child is having a "good day" and acts "normal."  The evaluation appointment took months to get, is very expensive, (thankfully our insurance covered it) and lasts an entire day long.  (The results were that I am not crazy and it is indeed Aspergers/Autism Spectrum Disorder)

I was anxious and I needed someone to listen.  I prayed, and that did help.  I quoted bible verses in my head anytime a little voice came in that said "you are crazy and wrong."  but I also needed human interaction and someone who had been through it before to hear me and encourage me.  I am lucky to be part of an online yahoo group.  I sent out an email on my worries and situation and then listened (well, ok read) but they also encouraged and really helped me feel less alone, and less crazy.

If you are from that group and reading this, especially if you responded I want to say Thank you!!!
We need listeners in our life! We also need to be listeners and I hope that I don't turn away when someone is needing me to listen.  Everyone is going through something and we shouldn't have to go it alone.  I have my Jesus, but even he had his disciples around him.   We were meant to support each other with love and open ears.

Thursday, July 26, 2012

Party like an Aspie

     A child going to a wedding is an instant target for being patted on the head and asked lots of small talk questions.  Generally, aside from the pat on the head I think most children like attention from adults.  However small talk and my daughter, not so much.  We were going to see lots of family that we hadn't seen in several years.  My daughter is nine now and I knew that she would be expected to make small talk.  She has been practicing conversation in her social skills group and I had no doubt that she could pull it off.  I also knew that for her, it was going to totally drain her of energy. 

   The wedding consisted of lots of pre-wedding festivities and post-wedding festivities.  My extroverted, neurotypical self was drained and exhuasted be the end of it.  However, I am getting ahead of myself. 
I am writing this for myself as a reflection, but also for others who might fear talking their aspie child to such huge events.   I believe we want to share our children with the family that we love, but we also want to protect them from being overwhelmed and drained, or having a meltdown and embarrassing us..  I have had events in the past where I believe my daughter suffered due to my lack of understanding of what she is going through.  Now that she is older and able to verbalize, and now that I have read books on Aspergers I have a better understanding of the struggles she has in these situations and so my hope was to give her just enough of the experience to gain some social skills but not so much that she overloaded.   I'm not sure if I was totally sucessful but I tried. 

   The first thing I did was explain what would be expected of her, and of my son.  I knew that the ceremony would be fairly easy for her as she has no trouble sitting and listening.  For my son, the sensory seeker we went over his list of compression activities that he could do and much to my delight he did them on his own, silently during the ceremony (I also bribed him with chocolate.) I am thankful it wasn't a Catholic wedding with a Mass!  It was nice and short and lovely. 

During the many parties and reception we stayed outside, despite the Texas heat.  The world isn't as overwhelming for my daughter outdoors.  She lasted much longer than she would have inside with voices echoing loudly off the walls and people bumping into her on every side.  We did however give her and my son a mission to have a short conversation with three people of their choosing before going off to play. 
After a good amount of time playing outside I could see the overloaded look in my daughters eyes.  This happend at two of the parties.  In both I searched out an empty room and quickly snuck her off to it.  Even being around me at that point is overwhelming and so she choose to be alone in the peaceful room.  One of the times she had a coloring book, the other just a pillow. 

   I think a couple years ago I would have felt too awkward sneaking my child off into a deserted room.  I would have left the party early, or dealt with a meltdown.  I have learned that I need to take care of my needs, and those of the rest of my family as well.  I wanted to stay at the party, and she needed space.  Although it's a bit unconventional it really was the best option.  It is what my child needed.  If I had a infant and asked for a silent place for my baby to nap nobody would have thought twice.  I had a few people ask where my daughter had went, and when I told them I got a couple looks of confusion, and a couple looks that seemed like that person would also like to escape from the loud chatter. 

We need to not be afraid to protect our children, but we also need to not be afraid to expose our children to things that are difficult for them.  Finding a balance is what they will need to do when they become adults, if we can give them a taste of that now it will be easier when it's their turn to lead. 

Saturday, July 7, 2012

Epic Summer Journey

I am very much a follow your heart, let intuition lead you, and go with the flow kind of gal.  If it was up to me there would be no clocks.  I hate lists and I despise schedules.  Impulsive... I LOVE being impulsive. 
(Sorry to my Aspie readers, but that is just who I am.)
So, when my family and I made the decision to make a major road trip, driving from Oregon, to Texas, then to Lego Land, and back home a huge part of me wanted to just wing it. 

For weeks my dear husband asked me if I had a list, of course I did...it was dancing in my head right now and I was pretty sure everything was on it or about to be on it soon.  Next thing I knew my daughter had gleefully made a complete list of what she needed to pack (three weeks before the trip.) and was walking around her room checking things off and looking very satisfied. 
Since I am also the kind of gal who loses things VERY easily I decided that if I must make a list it would be a google spreadsheet.  I made the list, my husband was now calm and happy.  But I knew that the list wasn't enough.  So much more planning needed to happen to make sure my family flourished on our epic journey. 

Somehow I landed in a family of list makers and schedule lovers.  Maybe it was God's little way of pushing me to get my act together.  Whatever the case, I got my act so together for this trip that I even got the complement "you are such an amazing planner."  I just laughed and laughed, but it was true. I kinda kicked butt on planning the trip. 
Thanks to my son's OT I got lots of tips on figit things to provide.  Thanks to pinterest and www.momsminivan.com I got amazing games for the kids.  I made folders for each of them with bingo cards, scavenger hunts, a map coloring book, comic books, and even a homemade eye spy game.   I planned to reveal prizes (OT figit suggestions) every couple hundred miles.
I made long pillows full of rice that looked like caterpillars so the kids could have some deep pressure.  I hung a shoe storage bag on the back of each front seat so the kids could easlily reach all there stuff and keep it...ORGANIZED! 
I booked hotels in advance with swimming pools, and I talked them through what the trip would be like in advance. 
All of this went against my instict, but it was all done with love and the amazing thing that happened...
the trip went wonderful.  They were happy, excited, rarely bored, and enjoyed the trip.  I enjoyed the trip, my husband enjoyed the trip.  Our family drove over 5,000 miles and we still love each other, not only that but we had fun together. 
Now, a little honesty here.  We did allow digital games after 1pm each day, and we did listen to a TON of Radio Lab

More on the trip soon...

Thursday, May 10, 2012

Wanted: A True Friend

Qualifications: Must be patient, kind, say what you mean, and avoid gossip.  It would be nice if you also enjoy discussing Harry Potter, and dislike American Girl Dolls. 

There, can I post that ad at my daughter's school and see if I get any responses? 

This year of school (3rd grade) is breaking my heart.  It's breaking her heart even more, and I am not sure that is even possible because my heart is being ripped in two and then put through a shredder.  She started the year off with a great friend, a true friend.  He still is a friend, but now it's only after school and maybe once a week because, he is a boy and this is the year that boys and girls tend to separate. She would gladly follow him anywhere, but he is too busy being a boy and rolling in the mud.

So now she is left with the girls, and frankly, girls are mean.  When you are a girl with aspergers they seem even meaner.  They don't say what they mean, they whisper and stare (at everyone) but when you are already prone to anxiety and paranoia it seems to be targeted at you, and hey, you are a little quirky so MAYBE it is targeted at you.  You can try to talk to them but the topics are boring and trivial.  They don't have the same interest as you.  They like to jump rope and play four square and you are clumsy and awkward so you always lose and then once again it seems like they are targeting you.  It just plan sucks! (and I hate using that word, but I just can't find a better one to use.)

My daughter has been at this school since Kindergarten.  I love the school, the teachers are great, flexible, and supportive.  The school motto is something like "teaching the whole child, heart, hands, head."  or some other waldorfy thing.  They have things like Peace tables for conflict resolution, anti-bully policies, an amazing school counselor, a great arts integrated curriculum. From the outside it looks perfect.  But tonight my sweet girl told me she felt like she didn't belong, like she wasn't a part of the school and that she had nobody.  I have to say, from her description of life at school I have to agree.  We are plugging her into every helpful thing we can, social group outside of school, social lunch with girls and a counselor at school, a peer buddy (this is new and I am still hoping it works.) but she is still lonely and disconnected.  

The school has small class sizes, one class per grade.  I used to think that was a good thing but tonight I am not so sure.  Tonight I wonder if we didn't narrow down her choices for friends far too much by going with the smaller school.  Sure, a big school is over stimulation and full of all kinds of crap, but maybe she would have a better chance of finding a friend?  I keep praying every year that some strange nerdy girl will show up as a new student and they will be BFF's 4 EVER but it's not in the cards. 

There are five weeks of school left, I told her to stick it out, keep trying the new peer buddy thing.  Her assigned peer buddy really does seem like a sweet girl.  The peer buddy also likes playing with the other girls though, and so that is what she does with her free time and my daughter doesn't want to participate either because she isn't interested in the game, or because she has been burned before.  Most likely, both. 
I tell her that I got made fun of, that her dad got made fun of, that every adult she admires got made fun of and it's because we are amazing people and something in other people wants to crush that.  I tell her she is special, that God made her, that she belongs in our church, she belongs in our family, she is loved.   She knows this, but it doesn't help.  Not tonight, tonight she doesn't belong in school and for a nine year old that is the biggest thing in the world.  So I keep praying, send a friend, send a friend, PLEASE Jesus send a friend.  The back of my head says, think how strong this young lady will be when she is a woman.  All the women I know who are strong had a similar childhood.  That thought though, it's not very loud because I am her mother and I just want her to have a friend.

Other thoughts:  Take her out of school and home school, switch schools, run away to costa rica with the whole family and be happy island people.  Oh, I have had ALL those thoughts and cycle through them from time to time.  Home School is a great option for some kids, but my kid only believes and listens to things taught by people who SHE determines to be experts on the subject.  I am only an expert on childbirth (I am a doula) and being silly.  My husband is an expert on electronic things, and cooking.  So, you will see we have left  math, reading, writing, social studies, and so on (homework is hell by the way.)  This means that academic school would be the worst uphill battle known to man.  I'm not going there!  I want our family to be a safe, happy place of love.  Home school for us would end that immediately. 

Switch schools, this one is more often coming to mind these days.  The truth is that mean kids are everywhere, and from stories I hear not every school has the support that ours does.  She trusts the teachers, she hates transitions and knows this place, even if right now it's not her favorite. 

Island people, ah..... let me just think on that for a moment.  It was rather cold today. 

Wednesday, April 11, 2012

Hammock Guilt

Recently, the mega million lottery was up to 50 million or 500 million or something ridiculously huge that would allow the winner to buy pretty much whatever they wanted. I didn't bother buying a ticket but I did play the What If game with my family.  My first thought was that I would start an orphanage or help my church, perhaps buy a building with a roof that didn't leak for my children's school.  My husband looked at me and asked, but what about for you? What would you buy?  My answer was instant.  I would buy a hammock.  That's it, I just want a hammock. I love hammocks, I have always wanted one.  Once I bought one for about 10 dollars in Mexico.  I never had a place to hang it.  It got dragged around from apartment to apartment  a sad tangled mess waiting for a place to hang.  Finally I gave up my hammock dream and it went in the garage sale pile.   Now I live in a yard with no good trees, the hammock stand seems to me a bit fake, or so I tell myself because that ads an extra price to the entire thing. 
Really though, are they THAT expensive?  I could get one for 100 dollars with a stand on amazon.  I just checked.  So, what really is my reason for not getting one.  I think it's because it would feel selfish.  After all, what is a hammock for?  It is for relaxing, being lazy, reading a book all day long, taking a nap.  Buying one is like announcing to the world "I DESERVE A BREAK! I AM TAKING A BREAK!"  (Also, I live in Oregon, it rains like all the time. So not practical)  Not to mention I would be spending 100 bucks on myself.   Some women have no trouble at all buying themselves something that cost over 10 dollars.  If that is you don't feel bad, I wish I could let go of that feeling of guilt, of unworthiness.   My husband is the main money maker so maybe that is why.  He would never care, he encourages me to get myself things.  But that guilt, it's there no matter what.   Recently though I discovered, while doing the taxes that he had spent quite a bit of money on video games.  Now, it wash;t a big secret, and really I didn't care all all.  He works hard, and totally deserves it, but to think that he can do that and I can't make myself buy a freakin hammock!?

Now, here is the kicker, my son is in Occupational Therapy for sensory integration issues (that is another story) but his favorite OT activity is a lycra hammock.  When he gets to rocking back and forth it brings him down to a good level of energy and he can focus better.   So, of course I start looking at the thing, googling the price (500 bucks! REALLY?!)  and figuring out how I might make one myself.   All within an hour I am planning how to get a hammock for my son, so he can relax, so he can focus, and find a calm in himself.

Why can I do this for him so easily, why is his focus and his calm more valuable than my own to me?  I don't think this was the way we were meant to be wired as mothers.  I know that when I am calm my children are calm.  The days when I am out of control it's obvious that they are effected.  What if I put my calm slightly ahead in the family priority list, or at least at the same level?   I wonder if that would balance everyone else just a bit more and make for happier days?  It could be worth a try if I can ditch the guilt and order the stupid hammock.   Plus a stand of course...because of my lack of trees.

Mamas, we must remember this lesson.  Our calm has value, our calm has influence on everyone else in our home.  Our calm must be protected.  Our calm must be given opportunity to grow.

Thursday, March 15, 2012

Often times I am totally worn down, I am tired, and I also feel like I am juggling, no, more like tightrope walking, or maybe fire dancing or perhaps riding a motorcycle in a cage with my husband on the other bike while the kids are standing in the middle.  Something that takes effort, concentration, planning, but also has enjoyment and thrill.  Something that  could go horribly wrong at any second.

That is how I feel preparing to go to the store with my kids, especially if I have more than one place to go.  How  I feel when we are going to have kids come to our house to play, or a dreaded, but also happily anticipated Birthday party invitation.  The worst is when it isn't planned, like if I am picking the kids up from school and realize I must stop and buy X ingredient for dinner or we have nothing to eat.  The fire dance begins and I have to pray I don't miss a move, and that I set everything up as best as I could for success.
It's all a fire dance and on a lot of days it goes just fine, but when it doesn't...LOOKOUT!

When it does go fine though, people on the outside don't realize all the preparation that has been done.  Like watching a circus, it looks so easy, effortless even. I am feeling a bit silly this week though, because I do work hard to produce smooth days and then I will get a compliment about how kind and sweet my daughter is.  Now, this feels good to hear, great even! But something inside me is screaming YOU HAVE NO IDEA!!! or "That is because we went over a list of rules and practiced a script before we came to this party and we will be leaving the moment things turn sour, but before you notice." 
Of course, I don't say these things.  I say "Thank you." Because I know that these people mean well, and really do truly think my daughter is wonderful, and because they are right.  She is sweet, and kind, she is amazing.  I think it's human nature to want recognition for the things that we do.  If we clean the kitchen we want somebody to notice how sparkly it is.  If we prepare a big meal that took 4 hours to make, we want people to know how long we worked. 
I have read about parents of children with Aspergers saying that they almost wish there child had a wheelchair so that everyone would know how hard they are working.  Because a wheelchair, or other physical disability is obvious, it's in your face, people know you are challenged daily.  They might even ask how they can help you, bring a meal over, or pray for you.   Personally, I haven't wished my daughter had a more obvious challenge, I do see where they are coming from though.   I have a friend who's son is the same age as my daughter.  He has been fighting for his life for nine years, he cannot talk, and he is in a wheelchair. My friend  has been fighting right with him.  When I think about my friend and her son I feel totally stupid and petty for my desire for people to know I am tired and working hard.  How blessed I am that my daughter can talk, and walk and how dare I feel this way.  Yet, these feelings still come up, and I will keep trying to push them away, 

Wednesday, February 29, 2012

Sometimes beauty, sometimes a punch in the face.

Some days there are beautiful moments where I am totally amazed and in awe of how my daughter perceives the world.  Like when she plays the piano and tells me that the song is purple with streaks of yellow and tastes like cherries.  (She has synesthesia a trait some aspies have.)  Sounds have color and also tastes.  I mean, can you imagine tasting your favorite song and having a color show to go along with?  It has to be incredible.
 
Then there are the moments where Aspergers punches me right in the face.  Tonight was one of those moments.  
It was bedtime, the routine is well known:
Vitamins
Pajamas
Brush Teeth ... wait, we didn't get there yet...back up

Brother is in the doorway, Sister wants to shut the door so that the cat doesn't eat the fish that are swimming merrily in the protection of the bedroom.  Sister shoves brother out of the way, maybe it was a gentle push, it doesn't matter.  Brother hits his back on the door frame and falls over crying.  Brother rarely cries, he is hypo-sensitive and doesn't feel pain like a typical kid.  He is hurting for sure.  Sister says sorry in a very brisk manner and head to the bathroom making funny sounds with her mouth as happy as a clam. 
This is not yet the part where I get punched in the face. 
Maybe she doesn't know he is hurt?  Maybe she didn't hear him crying? 

Me: "Your brother is crying."
Her: "I didn't mean to knock him over and I said I was sorry."
Meanwhile Brother is very upset and glaring at her, clearly feeling the lack of empathy.
Me: "Please look at your brother's face and say you are sorry and give him a hug."
Her: "sorry."  A quick flash of eye contact, a very plain, quick sorry, a fleeting hug with barely any closeness, followed by immediate whistling and back brushing her teeth.  After all, that is the next step of the routine.

****PUNCH IN THE FACE*****
Seeing my son hurting and bewildered by why she isn't rushing over and loving on him is the worst pain for me.  He is too young to understand why she does this. 

I can't fix it, I can train her like some sort of puppy to behave right but that instinct just isn't there and it kills me. 


Saturday, February 11, 2012

Fairy takes the stage...

Recently our daughter was asked to be in a comedy skit with a couple college students for a Parent Night  at her school.  I was nervous for her but also excited as she had expressed interest in acting before.  It turns out that acting comes very naturally to her.  She was able to memorize, improv, and was totally hilarious.  Everyone had a fun night watching the show and my daughter totally lit up.  She is often a quite little mouse at school (so I am told by the staff,) but not on stage.  On stage she is bold, and strong, and joyful.  It was wonderful to see her this way and I knew we needed to make sure she had other opportunities for drama.
 As luck would have it, the place that she goes to for social group was having a play.  Not just any play, a Shakespeare play (one of her current special interests.)  We signed her up and the play isn't for months but she is LOVING it.  She was casts for two parts, one being a fairy.  Totally perfect for her.
It isn't just my daughter who makes a great actress.  As I have learned from Tony Attwood's book, and from talking to my husband that aspies act all the time.
 People with Aspergers often take the role of a person who they think would be most successful in the current social situation and "act" that character.   I was shocked when I realized that my husband did this, but it made sense.  He would go from being in a totally tired and solitary mood to being the most boisterous person in the room with a crowd of people around him.   He looks the part of a happy go lucky social butterfly when really he is deeply craving to go back into his solitude.  Not that he doesn't enjoy this time, but it tires him greatly.   He turns on an "act" of what people want in this situation and acting is tiring.  Not to mention constantly sizing up the mood of the crowd, am I too funny? not funny enough?  What does that face she is making mean?  All of this runs through the mind of an aspie while they are having a normal conversation.   It's no wonder that many of them choose acting as a career.  They have been practicing their entire lives for the role. 
I am glad my daughter has found something that makes her light up, something she is good at, and in the process I have discovered more about they people in my life that I love so dearly.