June 14, 2013

  • Exactly one week from today will mark 11 years that I've been with Xanga.
    I cannot believe it may shut down!

    I met my husband here!  

    I don't know what I'll do if it shuts down.  I've been so loyal all these years.  =(

     

    We're moving next Thursday. =(

May 30, 2013

  • I am not a "person with autism." I am an autistic person. Why does this distinction matter to me? 

    1) Saying "person with autism" suggests that the autism can be separated from the person. But this is not the case. I can be separated from things that are not part of me, and I am still be the same person. I am usually a "person with a purple shirt," but I could also be a "person with a blue shirt" one day, and a "person with a yellow shirt" the next day, and I would still be the same person, because my clothing is not part of me. But autism is part of me. Autism is hard-wired into the ways my brain works. I am autistic because I cannot be separated from how my brain works.

    2) Saying "person with autism" suggests that even if autism is part of the person, it isn't a very important part. Characteristics that are recognized as central to a person's identity are appropriately stated as adjectives, and may even be used as nouns to describe people: We talk about "male" and "female" people, and even about "men" and "women" and "boys" and "girls," not about "people with maleness" and "people with femaleness." We describe people's cultural and religious identifications in terms such as "Russian" or "Catholic," not as "person with Russianity" or "person with Catholicism." We describe important aspects of people's social roles in terms such as "parent" or "worker," not as "person with offspring" or "person who has a job." We describe important aspects of people's personalities in terms such as "generous" or "outgoing," not as "person with generosity" or "person with extroversion." Yet autism goes deeper than culture and learned belief systems. It affects how we relate to others and how we find places in society. It even affects how we relate to our own bodies. If I did not have an autistic brain, the person that I am would not exist. I am autistic because autism is an essential feature of me as a person.

    3) Saying "person with autism" suggests that autism is something bad--so bad that is isn't even consistent with being a person. Nobody objects to using adjectives to refer to characteristics of a person that are considered positive or neutral. We talk about left-handed people, not "people with left-handedness," and about athletic or musical people, not about "people with athleticism" or "people with musicality." We might call someone a "blue-eyed person" or a "person with blue eyes," and nobody objects to either descriptor. It is only when someone has decided that the characteristic being referred to is negative that suddenly people want to separate it from the person. I know that autism is not a terrible thing, and that it does not make me any less a person. If other people have trouble remembering that autism doesn't make me any less a person, then that's their problem, not mine. Let them find a way to remind themselves that I'm a person, without trying to define an essential feature of my personhood as something bad. I am autistic because I accept and value myself the way I am.

    Copyright (c) 1999 Jim Sinclair

May 25, 2013

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    Happy Memorial Day weekend!
     
    I realized why I haven't been making much progress moving and packing.  The effects of aging + depression.
     
    Despite my overweight status my body is really weak on top of being unhealthy.  I can't lift or move heavy stuff anymore nor vigorously clean like I used to because my tendinitis on both of my arms and wrists start acting up. You can't escape aging.  I will have to start dyeing my hair now because as soon as I turned 36 all the grey hair started to anxiously make their appearance.  One of my dreams is to dye my hair purple and a boy short hairstyle.  Perhaps one day...
     
    It feels weird blogging about myself after sort of dedicating this blog toward bringing awareness to autism and talking about my daughter.  Invariably though going public about everything put me in a whirlwind of emotions.  I was excited that so many people found my interview so helpful and informative.  I was and am so thankful for all of you (those) that came forward and let me know what it meant for them even if it was just to thank me.  I was the one who should have been thanking anyone who read such a lengthy interview.  I was humbled.  
     
    At the same time, for someone who absolutely hates being in the center of attention, it made me even more uncomfortable.  Though I'm grateful for all the compliments I received, at the same time I felt guilty and self-conscious.  Though I may give it my best at this thing called motherhood I am undeniably far from being a good mother.  I felt that there was a huge gap between the compliments that I so graciously received and the reality of who I really was/am.
    I knew there was going to be a dip in my depression once it was all said and done but I am used to expecting these things and going through them.  I just didn't want people to think I was this angel or "got it all under control" type of mother.  
     
    It didn't help that I was already sulking in my depression about having to move from what we thought would have been our permanent home  to someone's home.  Did I mentioned how dirty it was?  Ugh...
     
    Add all those factors together and you got a lazy mom who can't find her brain anywhere and can't find any strength to pack/move.
     
    I got my iPhone 5 replaced for the second time a couple of days ago.  Hopefully this is the end of my iPhone 5 nightmare.  I decided not to put a screen protector on it this time.  If you know me you'd know that that used to be a huuuuge no-no.  I take care of my gadgets like their my baby.  I had iPhones ever since they came out and they always had screen protectors and cases on from day 1 so I never really got to enjoy them in the raw form.  But I felt like being more "daring" this time.  And you know what?  It feels so awesome!  
     
    And with that I'd like to end this post.
     
    Have a good weekend despite the bad weather!

May 23, 2013

  • Let me share this link with you:

    http://oddsandfriends.typepad.com/askanaspie/2005/04/should_i_stop_h.html

    Stimming "is a way of moderating that stress. It creates a single, separable, predictable sensory experience which is under the autistic person's complete control. The stim serves as both a channel for all that nervous energy and as a focus for concentration by which to "turn down the volume" on all that light and sound and information."

May 22, 2013

  • May 22, 2013

    Hello...

    I'm taking a break today, not that I've done a lot much lately anyway, but because I'm too tired from lack of sleep and utterly unmotivated to pack.  I'm still recovering from being sick.  Going on for more than a month now.

    I wanted to share some of Ayla's small improvements and updates.

    Last week's:

    - She started singing all the songs she's learning in school.  
      The list of songs she's been singing: 
          - Feelings by Signing Time - I can't find a better version - Ayla tries signing as well
          - America, the Beautiful
          - You're a Grand Old Flag
          - Zippity Doo Dah
          - [Our city's name] has the best schools - Yeah right!  I roll my eyes at this.  It's like brainwashing.
          - God Bless America

    - She has been able to answer questions very well since last week.  Every day when I pick her up at the bus stop I ask her "Did you have fun at school today?  What did you do?" and she'll tell me what she made at school during arts and crafts accurately.  They are going through the alphabet and doing each letter for a few days.  Last week it was the letter W.  Sometimes she would tell me "I made a dolphin" but it was actually a whale (that looked like a dolphin).  And other times she'll say "I made a W," "I made a yo-yo," etc.  Just the fact that she's actually answering me is such a progress.  I've been waiting to have conversations with my child even before she was born!  That was one developmental milestone that I always looked forward to.  Alas, it is coming along albeit slowly.

    - Our dog Soonie tripped and fell while walking so Ayla went over to her and said "어디 아야 했어?  여기 아퍼?" (Where are you hurt?  Does it hurt here?)

    - She was still (even this week) having nightmares about going to school and constantly saying "no go" whenever she could.  It was the first thing she says in the morning when she wakes up, when she wakes up in the middle of the night, before going to sleep, throughout the day even after she came back from school!  She tells me everything that she does at school in an indirect way, by telling me everything she doesn't want to do.  "No go to library, no play with blocks, no play with kitchen, no read books, no use glue" and she because she loves riding the school bus she says "Only school bus, no class?" in a question format to receive confirmation from me.  This is also true when she says "no go."  It is always in a question format in order to get confirmation.  She does very well while at school because she knows she has no power there so she participates and goes along with everything.  She is probably their best and most compliant student.  But as soon as she's home she's constantly fighting to go.  And she's always repeating "mommy pick you up at the bus stop" and wanting me to repeat it because it keeps her mind at ease.

    - She started prescription allergy medicine...on top of all the medicines she's been taking.  sad  One more month of seasonal tree pollen allergies to go for both Ayla and me.

    - When I told her I had to take a shower she said "Mommy is dirty again" - LOL  

    - While playing with the phone I heard her say "Oh wait a second, I'm talking on the phone right now" and "Oopsie!" silly

    - Usually whenever she was asked unexpected questions she was not able to answer them.  Like if I'm not wearing any socks and I would ask her "where are mommy's socks?" she wouldn't be able to answer "no socks."  Last week when she was playing with the therapist with toy cookies with numbers on the back and the therapist asked her "where is number 12?" when there was no number 12 cookie and she answered "I can't find it."  This is a huge improvement.  It took her a while to answer that but the fact that she answered it was a breakthrough.

    - She has a tendency to grab and snatch objects when she wants them instead of asking them and our therapist normally says "don't snatch" and last week Ayla preemptively scripted "don't snatch" when the therapist held back an object she wanted.

     

    This week's:

    - She was unable to give a total when asked "how many [fill in the blank] are there?" questions and instead would start counting 1, 2, 3, etc.  This Monday when asked "how many cookies are in the cookie jar?" she actually answered with a total count of the cookies instead of counting!

    - While playing with her Little People school bus and characters she said "You wanna go in the bus?  Then stop screaming!" and "Ah uh!  Don't sit there!" - re-enacting what she saw or was said to her.

    - During the winter we would give her heated milk but since the weather has been getting warmer she's been specifically asking me for 'cold' milk but today she surprised me by telling me specifically that she wanted "warm milk."  

    - She sneezed this morning and everything in front of her got wet from her sneeze so she asked me to wipe it but I only wiped her mouth and didn't realize other things were wet until she said "it's still wet."  I was surprised that she was able to say that.

     

    It seems like every day she is surprising us with her speech improvements.  It may not seem like much compared to NT kids but I appreciate these small improvements so much.

    I wanted to share some articles related to Autism:

    I thought this article was interesting for future babies who might have ASD: http://www.youtube.com/watch?v=_xehrNxliIM&list=PLA95AC58852197711

    This is for fellow special needs moms (previously posted on Mother's Day on my FB):
    1.http://special-ism.com/a-letter-to-the-moms-of-kids-with-special-isms/
    2.http://adiaryofamom.wordpress.com/2012/06/05/dear-you/ 
    3.http://nationalautismassociation.org/another-child-with-autism-drowns-before-you-judge-know-the-research/ - "In 2009, a study done by the University of Wisconsin-Madison found that mothers of children with autism showed physiological markers for chronic stress comparable to that of soldiers in combat." 

    And this last link is for those questioning and criticizing the parents of the Autistic kids that were found dead last week after they had wandered away from safety: http://nationalautismassociation.org/the-wrong-questions-are-being-asked-about-mikaela-lynch/

    Wandering and elopement are serious and common problems with Autism families.  Fortunately Ayla only runs and she doesn't wander much.  Her wandering is fairly controllable.
    If you happen to help search efforts for autistic kids who have wandered off please make sure to check bodies of water first because autistic kids are often attracted to water but they do not know how to swim.

     

    For picture updates please go to my Instagram - http://instagram.com/yjk76
    One thing I ask is that if you request to follow me and your IG is not public then please allow me to follow you too.  In other words, please publicize your photos to me since I am doing the same.  As you can see my pictures are not public and I like to keep it that way.  Thanks!

May 15, 2013

May 14, 2013

  • A fellow special needs mom introduced me to this other special needs mom who has a blog called A Diary of a Mom.
    I don't currently have time to read her actual blogs at this time however I do follow her Facebook page and she posted this on Mother's Day.
    http://adiaryofamom.wordpress.com/2012/06/05/dear-you/

    If you care enough to read the whole thing and also read some of the comments below you get to realize how difficult it is being a special needs mom/family.
    There is so much truth in what she said.
    The comments section just reveals how much hardships and struggles families and moms of autistic kids have on their plates.

    It is utterly humbling.  Those comments.  Lives of real people.  So very raw.

     

  • Allergies are killing me and unfortunately Ayla also has been having bad seasonal allergies lately.
    She has an allergist appointment later today and we weren't able to give her any anti-histamine medicine prior to her appointment.  Poor thing.  She stayed home with me yesterday because her allergies were so bad.  Hopefully she will get some relief today.

    Part 4 of my interview at www.hellobee.com is up.

    http://www.hellobee.com/2013/05/14/raising-an-autistic-child-part-4-challenges-and-breakthroughs/#more-56344

    In this installment I share a lot of details about Ayla, from the negatives to the positives.

    Thank you again to everyone reading and commenting!  I REALLY REALLY appreciate all of your comments, likes, and messages.  
    I'm a bit annoyed that my gratitude doesn't quite genuinely translate through this online medium.  
    I just wish you could see through my heart.  =)

    Tomorrow will be the last installment of my interview.  
    It took me over two weeks to write the whole interview.  Many late nights having to remember how the early years were as well as having to organize my thoughts and analyze Ayla as well as our situation in order to put everything in cohesive words.  It was very challenging and stressful and emotional at times but it was all very very worth it.
    I always wanted to put everything into words and I always intended on blogging about it but I never found the time nor the occasion.  Through this interview it gave me the chance to do just that and with the help of Bee from Hellobee it was beautifully organized.  I couldn't have done it better.  I'm really thankful for that.

May 13, 2013

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