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...