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Who Runs The World??

Me: *singing* “Who runs the world?!” *shouting* “GIRLS!!!!”

D: *shouting* “BOYS!!”

Occasionally Lyric’s moody teenager self will join in the silliness. 

Then we all laugh!

Every time this song comes on in the car the above scenario plays out.  But recently I started thinking,  am I doing all I can to teach Diego that men and women are equal??

Like most autistics, D is a very black and white thinker, grey areas are difficult for him. 

Due to his very traditional (dare I say slightly ignorant) father, cartoons, and the media,  D has adopted the thought process that generally boys are better than girls.  

After one of our singing sessions, I came up with a plan to show Diego that men and women are equal.  It would have to be good and convincing because this can be a grey area in Diego’s eyes, especially when he is being  flooded with ideas to the contrary. 

*sigh*

I won’t even go on my rant about how frustrating it is to see the enormous amount of sexism and misogyny in the media and how nobody really ever takes issue with it…I won’t.

Not here.

Anyhow I started the equality discussion with Lyric when he was about 4, and it still continues everyday.  So one evening I sat down with D and talked about how men and women can do the same job.  He looked at me and said “no girls can’t do boys’ jobs because they are not strong!”  So I pulled out our iPad and on YouTube and showed him videos of male nurses, female construction workers, male receptionists,  and female car mechanics.  With each video his eyes got wider.  I explained that a lot of people  think that girls are not as strong as boys, but that really isn’t true.  I talked to him about how his Nana is awesome at building things and how his “twin friend” Tomas’ favorite color is pink.  I could almost hear the wheels in his head turning.  After I was done, he didn’t have much to say. 

He stood up, walked over to his Legos, while muttering “OK.”

Not sure if I got my point across I made a mental note to broach the subject briefly in our everyday conversations. 

A few days later our silly song “Run The World” came on and this time after “Who runs the world?!”

Diego responded “BOTH!!!!!!!!!!”

=)

Hope Is In Short Supply These Days

Cynthia (our ABA therapist/saint) and I decided that it was time for her to help me get  Diego to change out of his uniform after school.  I can’t seem to get him to allow me to do it (or anything..really), let alone ask him to do it himself.  It isn’t a matter of his ability to physically perform the action of dressing, it is a matter of overcoming his anxiety.  The anxiety (esp since school has started) makes him incredibly rigid, which then turns into a huge protest and then a self-injurious melt down.  When Cynthia arrived yesterday I warned her about what she was in for and asked when I should intervene. 

I trust her, she has helped us so much and has a heart of gold. 

She said that if she needed me that she would peek out and grab me, I told her not to worry that I would be right by the door. 

D was already protesting as they walked over to his bedroom, I knew this was going to be major.

I went and sat on the couch, D’s bedroom is right by the living room so I could hear everything. 

Which was both a good and bad thing.

D immediately started screaming and crying “NO I CAN”T GET DRESSED!!!!”

Cynthia calmly told him that he could do it, she tried to use her reinforcers, and tried to negotiate.

The situation just got worse….much worse 

Diego then began screaming “Mommy help me please!!. My mommy always helps me!!!!!!!!!!.”

It took every ounce of strength I had not to run in there.

 He needs to overcome this rigidity that keeps him from doing so much and nothing I am doing is working.

I HAVE to let Cynthia try. 

The screaming continued, he started to hyperventilate…I could hear every breath, every hiccup, every yelp.  Then he began to hit himself and kick the walls.  I could hear Cynthia’s calm voice telling him that it was ok, and that she was there to help him.  That once he was just a little bit calmer, she would call me in to help him.

This same pattern of behavior went on for about ten minutes while I sat crying on my couch.

I have never felt as helpless as I have for the past two months.  This same type of melt down happens multiple times everyday.  What I find amazing is how he verbalizes how he his feeling during these times. 

He will scream and cry “I want to calm down but my brain won’t listen, my body hates me that’s why it hurts me, I am trying very hard not hit you mommy!!!”  His body is tense, face splotchy and red, and he is typically on the brink of hyperventilating.

and I can’t do a f*cking thing to help.

Not

one

thing

Cynthia finally peeked out and I ran into his room, he was drenched in sweat and hysterical.  I scooped him up in my arms, hugged and rocked  him.  We laid in his bed and I rubbed his head, repeating over and over  “it’s ok, mommy is here to help you”.  I also told him that Cynthia and Stella want to help him too. 

After about 5 minutes his breathing was a bit more regular and the crying had subsided.  I gave it another 5 minutes before revisiting the task of undressing.  I told him that if he can just take ONE sock off that I will do the rest.  He protested in the beginning, but I told him that we could do it together.  He eventually took the sock off, and I praised him like he won an Oscar,and  I meant it.  Because for me….Diego removing one sock, FEELS like he won an Oscar.

Things finally calmed down and at this point Stella the ABA supervisor had arrived .  Cynthia  filled her in on what happened and we all agreed that the rest of the session would have to demand less from Diego.  Stella began to play Dinosaurs with D and Cynthia and I went to talk in the kitchen.  She gave me the run down of what happened in the bedroom and there were  tears in her eyes as she said “It is so hard to watch him like that.  You can tell he is trying so hard to get it together.” 

So of course this opened the flood gates for me, I excused myself and went to the bathroom.

The rest of the session went on without any more major meltdowns. 

Stella came up with a new plan to reduce the demand and use the token/reward system for EVERYTHING he does. 

I listened and I will do it all,  but honestly I am not incredibly hopeful.

Hope is in very short supply these days.

I always try to be so PC about autism, but you know what?

I hate autism, I absolutely despise it.

Do The Best You Can and Never Stop

Diego’s first day at the “Big School” is Monday. I have spent the months since our IEP meeting preparing him for Monday and have been in constant contact with our team from the school.
Last week we visited the school numerous times, and I can’t even begin to express how much everyone at that school is invested in Diego’s success.
So why can’t I get this knot out of my stomach??
I have come to expect these knots as the parent of a child with autism.
They….Just….Don’t….Go….Away..
His teacher this year is amazing and his private school teacher ended up getting hired at the “big School” and she has been such an amazing resource for everybody there. I have even prepared for Diego to have a 1:1 aide for the after school program if he needs it.
But I still feel like I am missing something, although I know I am not.
My ‘I’s are dotted and my ‘T’s are crossed.
My blog has been severely neglected and I miss it so much.
Things at home have taken precedence over everything, and it isn’t just D.
Lyric is a tween almost teen and is acting every bit of it, not to mention his absent father of ten years has come back in his life. Which in the long run is great, but makes everything so much more complicated. As Lyric’s mom I am doing everything I can to facilitate this relationship, no matter how hard it is for me.
He wants this and deserves it.
I did find out a couple of days ago that Lyric scored advanced on all of his standardized testing, which made me feel great.
Like I am achieving the balance of being his and D’s mom.
I love them both so very much
Diego’s father and I have been civil, which is amazing considering how bad things have been in the past between us. But he is still heavily in denial about D’s autism. He noticed D can’t ride a scooter and decided that it was my fault, because I don’t take him to the park enough
*sigh*
When I attempted to explain that the scooter issue was more due to his gross motor delay than a lack of park outings, he told me that there is nothing wrong with Diego. I told him that I agree that there is nothing “wrong” with our son, but that he does a have autism and that includes different kinds of delays. He disagreed with that as well.
So instead of attempting to convince him otherwise I just listened, thanked him for his opinion, and politely explained that I will keep listening to the experts with extensive knowledge about autism (which include myself).
Diego started ABA in July and I already see tiny signs of progress, we also switched meds and I believe that is helping as well. He has been having some issues with his eyes though and I am taking him to the opthamologist in a week. I hope it is just his allergies and nothing else.
My husband is grieving and it is a deep grief that seems to changing the core of who he is. I wish I could write about the implications of it all here, but he doesn’t do public and if he gets wind that i did, it will just make a very difficult situation so much worse.
So I won’t.
To say my plate is full wouldn’t even cover the magnitude of the things I am facing.
I don’t have much support right now, which makes everything just seem so much harder. The needs and wants of those close to me currently trump my own, and that is ok for my boys, but not the others.
Too bad they haven’t gotten that memo.
But I haven’t set any boundaries either…..it is hard to do that with people you love.
I did take a break for myself and went with a group of friends to Vegas for a weekend. It was interesting, as the last time Iwas in Vegas was ten years ago, but it really isn’t my bag. My sister kept both of the boys and I was so grateful because she is one of the few people I can leave them with and not have to worry for a second. She is amazing and I am blessed to have her.
I have started seeing a therapist, it has been a long time coming.
I will be 31 in a week or so and have promised myself that I will finish my nursing degree, even if I am an old lady when I finally finish.
I need to do it for myself.
I also think I need to make blogging more important than it has been.
It is my way of getting all of this out.
Expect a post about the first day of school soon and good luck to everyone on their first day back as well!

IMFAR Part 2

Once Alex was done interviewing , we walked back to grab some coffee.  As we walked around this part of the conference, I felt like I was in Disneyland.  I met a man that invented a vest that works similarly to Temple Grandin’s Hug Machine, I came across fMRI’s and  fancy EEG’s, but what stood out most to me was the level of comfort to just be.  This conference was filled with people who ‘got it’ whether on the spectrum or not.  It was so beautiful to watch, and I couldn’t help but to fantasize about a world like that.  A world that doesn’t notice the difference but does notice all of the amazing things inside the person.  Speaking of amazing things, back to the story. 

Alex and Noah needed to edit some video and after Susan, Adam and I found some food we headed over to the video room to join them.  Susan and I sat down and talked while the guys were intently focused on editing.  After a while I walked over and checked out some of the videos and couldn’t help but gush about how professional it all was, especially on the “G-string budget”

Did I mention that Alex has a fantastic sense of humor?!?!

He does.

All of the guys did.

It was getting later in the morning and I had to get home, but REALLY didn’t want to leave.  I gave myself another hour and I am glad I did. Susan and I met a woman with four children (one or more on the spectrum) getting her doctorate.  I have no clue how she is managing it, but she is and I think that it is fantastic.  I met a young man (in his teens)  who had won a trip to the conference and he was absolutely charming.  I also met a wonderful woman from Autism Speaks, please forgive me for not knowing everyone’s name.  I was so doped up on cold medicine that morning that I am surprised I remember half of what happened. (a week later my cold turned into pneumonia…blah)  Then the next thing I knew John Elder Robison walked in.

Seriously!!! 

He and Alex discussed the conference and what exactly Alex had gotten on video that morning.  One of my favorite parts, was when John told Alex, Adam and Noah how proud he was of them. 

I just wanted to hug them all!

But I restrained myself….LOL

I did watch John give the guys this amazing lesson on microphone frequencies and how fast sound traveled.  It was amazing to watch all of their brilliant minds at work. 

Simply amazing. 

I did everything I could not to cry as I thought about all of the challenges associated with autism that our children face that can sometimes cloud how incredible their minds are.  But I was also hopeful watching the four of them working together (some on the spectrum and some not.)  It was a great dynamic to witness. I did get a chance to talk to John and I thanked him for writing “Look Me In The Eye” and also explained that it was my first peek into what Diego’s world might look like.  He was fantastic about it as I’m sure that I was talking way too fast 🙂

Susan and I spent some more time talking, she is doing amazing things for people on the spectrum transitioning out of high school and into college.  When it was time for me to leave, I was bursting with love and hope.  I got to see and hear that the hard times do get better. 

The biggest thing that stood out to me was that I felt like I was with “my people”.  I never had to explain what the acronyms I was using meant, or give my quick  break down on autism.

Everyone there just knew.  It was great!

I am so thankful to Susan, Alex, Adam, Noah, John, and every other person I met for such a life changing experience.

IMFAR Part 1

The IMFAR Conference was held in San Diego a few weeks ago.  Susan, who blogs over at Taking The Awe Out of Autism ,wrote to me on FB and said she was coming down to attend the conference and we arranged to meet up for drinks.    There are so many women that blog that I have developed friendships with and each one of them is amazing, the great thing about the internet is that it doesn’t matter how far you are from each other.  There is still this amazing “autism mom” connection that we all seem to have.  With that being said most of them live pretty far from where I am and I was super excited because I would actually get to meet a woman I admired so much in person!  We arranged to meet up that Friday night for drinks.  Friday comes and of course it is the day from hell! Work was a nightmare, then after work I had to shoot to D’s new elementary school to observe the special day class (which deserves an entirely separate blog), and then race to pick up the boys (on opposite ends of town) to get home in time to meet with the behaviorist to finish D’s evaluation.  On top of everything else I felt like I was getting sick. 7 o’clock  rolls around and Diego is at the tail end of an awful day, I wasn’t too concerned because my sister was coming to watch the boys and if anything makes D happy, it is his Titi.  My sister showed up and Diego was still struggling, bedtime had been particularly rough. My head was pounding and D’s yelling and screaming just made the evening that much worse.  I made the decision to text message Susan and ask to reschedule, I just couldn’t make it.  We ended up deciding on breakfast the next morning, I was so happy that it worked out because I had really been looking forward to seeing her.  Saturday morning came and I dropped off both kids with family and headed down to the hotel to meet Susan for breakfast.  I had no clue she was staying at the actual hotel that was hosting some of the IMFAR conference.  We met down in the lobby and I felt like I had known her forever, she is such a lovely person.  As we were walking upstairs she mentioned something about “meeting up with Alex”, at that point my mind raced back to a text message from her on Friday that said “Alex and John may come too”, I didn’t give it much thought at the time because things were so nuts.  But when she mentioned it while walking upstairs I started to wonder who Alex was. 

Because it sure sounded like should have known. 🙂

When we got upstairs I was intriduced to Adam and all three of us grabbed some food from the continental breakfast area.  Adam and Susan were discussing ALex’s wherabouts and then it hit me! Susan and Adam were referring  Alex Plank, the young gentleman that runs Wrong Planet!  Wrong Planet is an amazing web community of people with neurological differences. 

WOW! 

LOL…Yeah I said WOW!!  I was really excited to meet him!  Before I go further let me explain something, when D was first diagnosed I was scouring the internet for hope, I desperately needed to know that another person like my child grew up to be happy and successful.  I found Alex Plank and John Elder Robison.  These two men’s stories were the first glimmers of hope during an incredibly dark time.  So to know that I would be meeting one of them in person was so exciting! 

But I kept my cool 🙂

We walked over to the an empty hotel room that was being used as a video room.   Kind of like a headquarters for  Alex,Noah and Adam while they were filming coverage of the conference for Autism Speaks. When we walked into the room, Alex and Noah were very busy gathering this cord and that mic, so I just tried to stay out of the way.  Susan introduced me to Alex and Noah and we all said hello and then it was back to business.  Alex was interviewing a young woman about her research with autism phenotypes and it was time to go meet with her.  Susan, Adam and I followed Alex and Noah, while Alex was interviewing the young woman the rest of us walked off to look at all of the amazing research that is being done to help our children and chat.  I was floored to see the enormous amount of science and dedication going into helping everyone  better understand poeple on the spectrum.  Seeing it all  gave me so much hope.  Susan gave me some amazing advice and we shared stories.  Adam mentioned that it was interesting to hear the mother’s side of autism.  We smiled and looked at each other, we are in the trenches every day, we don’t know anything else.  

I have so much more to write but it is too much to read or write in one sitting, so I am going to use Jess’ great idea of breaking this story up a bit!!  Stay tuned for part two of  my amazing Saturday morning experience!

Miss Kelly

Last night Diego had his Open House. 

Once we got home my Facebook status read:

“My baby stood up in front of 50 parents, spoke 3 lines and made it through both songs. He and his wonderful teacher Ms Kelly are amazing! Never underestimate the power of a teacher that cares. I am forever grateful to her.”

Despite the sensory nightmare that was last night Diego managed to get through the entire evening with out melting down once, and he even participated in the performance.  He looked pained through a lot of it, but he got through like a champ.  The first thing Kelly said to me after they got off stage was “HE DID IT!!!”. 

I just cried and thanked her.

When I first met with Miss Kelly, I was pretty positive that she wasn’t going to be a good fit for Diego.  She came off  immature, slightly arrogant, and would cut me off before I was done with my sentences.  I would soon learn that I was very wrong.  I think she may have thought that I was crazy overbearing psycho mom. 

Maybe I am a little bit 🙂

During the  first month of school Kelly and I hit a few bumps.  But after that first month, Miss Kelly fell in love with Diego (her words).   She knows how to manage Diego and the plethora of behaviors that he comes with.  I take comfort in knowing that Diego is ok when he is with her. 

Emails like this prove to me everyday that we are incredibly blessed to have her as his teacher:

Super day! Diego had EXCELLENT restaurant manners and was such a good kid : )Loved his share too…. only that little guy would find a way to bring sea animals and the world together ; ) Loved it!”

and

Great day Shivon! I can’t express how much I love that little guy and how his silly little faces and smiles get me through the day.  Today I asked him if he would stay in Kindergarten forever and he gladly replied, “Sure!”

and

“D was a trooper today- K let me know about his early pickup and I forgot to remind R before I went to lunch.  My heart dropped when Diego already had on his green fieldtrip shirt and was sleepily walking to use the restroom when I came back from my break.  LUCKILY, he wasn’t phased at all when I informed him that you were getting him early! Looks like our little man is adjusting better to change : )”

She is such a gift.

I thank her every time I talk to her, because I feel like my simple words just aren’t adequate enough to convey the depth of my gratitude to her.  To prepare for next year she has even offered to accompany me to Diego’s IEP meeting.  I expressed to her that I didn’t want her to lose pay as she will be missing work to attend and she looked me square in the eye and said “I want to be there”. 

Once this school year ends I will miss having her as Diego’s teacher , but am happy knowing that we will always have her as our friend 🙂

Light It Up Blue

Jess from Diary of a Mom wrote a letter to our president, asking him to Light the White House Blue.  It is an eloquent and beautifully written letter and it is in the White House as I type this.  Not yet in the hands of President Obama, but hopefully soon. 

We have about a week.

We need your help, if you haven’t commented on the letter please go here ——> Letter and do so. 

President Obama needs to see that Autism affects so many families in the US.  Statistics are one thing but our voices, united together, are so much more powerful.  I thank you in advance 🙂