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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!

A Battle Won!!!

I have no time to blog right now, but had to share this!!

After a year and a half of fighting with the regional center to qualify Diego for services, they have finally done so! 

I am so thankful.

For each one of you that prayed or sent good thoughts, you are lifesavers. 

Ok, now back to clinic…seeing as I’m the only one here today.

UGH

Holiday Spirit

There is so much going on with school that I need to  blog about, and will later.  But in the interest of preserving my sanity today, I am writing about our holiday season so far.

Enjoy 🙂

I made spaghetti with a different sauce the other night.

I should have known better.

See noodle debacle here

Me: “Papa why aren’t you eating your spaghetti?”

D: “I don’t like it….”

*thinking*

Seriously, Mr. ‘ I eat everything in sight ,since I started the Risperdal’??

Me: ” Are you sure that you don’t want to try another bite?”

D: ” It tastes like trash, yucky yucky trash”

Me:” Oh….ok…”(speechless and trying not to laugh)

My girlfriend looked at me incredulously, like ‘did he really just tell you that your food tastes like trash??’

When we were out of earshot, I explained to her that I switched sauces and apparently chunky Ragu tastes like trash. 

I love Diego’s honesty.

Her and I were trying to get out of the house to get some Christmas shopping done, so Rickey ever so arrogantly proclaimed “I got this” and told me to get a move on. 

Well alright then.

Rickey thinks that I am a little too accommodating with Diego, I actually think that I am just more in tune.

The reality is, that Rickey is an undercover softyand he thinks that I have no idea that he is the Stay Puff Marshmallow Man.

Ha!

When I got home with the tree, Diego proudly declared that he had the GOOD spaghetti with meatballs in it.

Rickey gave him spaghettios.

See?!

He is pure mush 🙂

In an attempt  to take advantage of Diego’s newfound holiday spirit, we decorated our Christmas tree on Saturday. I had the christmas carols playing and D had his football Christmas hat on. 

It really felt like Christmas, errr well kind of….80 degree weather screams beach…

But Christmas?? 

Not so much.

I know some of you would like to choke me as you are being enveloped in snow at the moment, but it is really weird to celebrate the holidays when it is so warm outside.

Dang, can’t we just have our typical San Diego  ‘chilly’ 60 degree December weather?! 🙂

Anyway, regardless of the temperature Diego encompassed the holiday spirit…we had a lot of fun and I am looking forward to experiencing more with him over the next two weeks.

I just want to squeeeeeeze him!!

After hearing about Diary of a Mom’s success with Santa, I think we may venture out and try it this year. 

Thanks for the encouragement Jess 🙂

Lesson Learned

Dueb to less than stellar (this is the understatement of the year)  experiences growing up  I have always been very skeptical of people and their intentions. 

I just never defaulted to the ‘people are generally good’ thought process.

It is sad…

I know…

but

as the years have passed I have gotten a little bit better.

Especially this past year.

I have ‘met’ some pretty amazing women that are just innately good people.

Beth has been one of them.

So the story of Nik’s iPad goes like so…..

Beth posted a super adorable pic of Nik using his borrowed iPad on Facebook sometime last week and the gears in my head started to turn. After a week of madness here at home, I decided to put my plan into action

I emailed Jess on Friday and asked her if she thought Beth would be ok with us trying to raise money to get Nik an iPad of his own. 

Then Jess emailed around and got a great idea from Shannon for fundraising. 

ChipIn.com.

I emailed Beth and asked her if it would be ok with her, if I plastered Nik and his story all over the place to raise some money for an iPad.

She agreed.

Monday it was on!!

I was sick and at home, so I had plenty of time to promote away.

Then

other people

donated

and

promoted.

Beth would send me updates on what was coming in because the chipin widget was wacky and as each email came in with a higher dollar amount, my hope just increased.

I thought ‘Holy sh*t!! We really might do this!!’

We raised 850 dollars in less than 2 days.

I am still reeling from the response to help Nik find a way to kick autism’s ass.

In fact people are still emailing me to ask if they can still donate for apps and accessories. (which you can, see the blog entry below)

I also learned one hell of a lesson….

that

maybe

just maybe

not all people are shady, evil monsters…

You all are amazing.

Thank you so much

Who Needs Language When You Have Words?!?

D had his speech evaluation yesterday, it is his second in a year and it showed what I thought it would.  Diego’s expressive and receptive language are average, he has the vocabulary of a six-year-old, but has an extremely difficult time putting these things to use in conversation.

Pragmatic Language Dysfunction.

If you would have told me two years ago that there was an issue of having the words and not being able to use them in conversation on a regular basis, I would have looked at you crazy.

Anyway the SLP was fantastic and she facilitated the last social skills group Diego attended so I really have trust in her assessment.  She gave me some pretty good ideas, most of which was the use of visuals. I use them for  his schedule, but I need to get better about that and use them in times I think he may have difficulties. 

Sounds great but per his current private school, they just don’t have the time for a visual schedule or the use of PECS

I think that I will have to have this added to his IEP for school next year as I’m not sure if it is on the current one.  The SLP also made it a point to note D’s lack of imagination and gaze avoidance, she thinks that it is worse than when he was with her in the social skills group back in August.  The plan of action is to start the new group sooner than later, and after that do one on one peer speech therapy. 

*sigh*

The next evaluation is with Dr Lincoln for a neurpsych and cognitive function evaluation.  This is the big one and I need major prayers, chants, or koombayas (whatever you do 🙂 ) sent my way so that he sees in a two-hour time period what I see everyday with Diego. 

Diego’s behavior has been on a nice streak for the past week or so, it has been fabulous!  If you take away the current subject matter of things being dead, heads being chopped off, or bugs “sucking the juice out of his brain”, I would say it has been one of the best weeks we have had in a long time. 

Diego has had a fixation on death, blood and all things gory.  He never says he will kill anyone, he only speaks of things dying, killing him, or thanks to his father’s poor judgement  bugs being the perpetrator of such things.  I guess Diego was allowed to watch a movie on television that had killer bugs and boy oh boy has Diego been perseverating on it!!  His father’s response when the psychologist asked him why he would let Diego watch this was that he wanted to “encourage Diego’s interest in bugs.”

SERIOUSLY?!?!

Take his ass on a bug hunt in the backyard!!

The psychologist said this but in a professional manner.  It still seemed to go right over Diego’s father’s head. 

May 11th can’t get here soon enough 😦 . 

I’m not even guaranteed they will make a decision regarding custody at this court appearance.  They will probably just continue the matter like they do everything else.  I will ask that it not be continued out very far, but there is no guarantee of that.

Ugh… 

Oh I almost forgot!!

Lyric has been chosen  to attend the Junior National Leadership Conference in Washington D.C this summer.  I am so proud of him.  The expense is quite steep, but we are going to apply for a scholarship and hopefully that will offset most of the cost.  He is very excited about it and is actually looking forward to writing the 300 and 500 word essays that he needs for the scholarship application.  The application is due Monday the 26th so he (with some help from me to get started) will be a busy little man for the next week.

*photo source http://www.webdesign.fm/getting-the-most-from-blog-commenting/*

WooHoo!!!

Congratulations Nana!!

Brag time!!!

Yesterday was my mother’s 11 year anniversary of her sobriety and everyone was meeting at a local restaurant for dinner to celebrate.

I was very nervous about taking Diego on my own as Rickey was scheduled to be at work, but figured that we would try it and worst case scenario is that we would have to leave if it all became too much for him.

Anyway it turned out that Rickey had yesterday off and this put me at ease a bit.  Having the two of us to attend to Diego was way better than just one of us.  

Before we left to the restaurant, I prepared a PB&J dinner (I think I have mentioned that is all Diego will eat for dinner at this time), some sensory stuff, his whales, and his Leapster.

We were as ready as we could be.

When we were walking up to the restaurant, Diego said ” Oh no! Not this place, it bumps my head.” 

We told Diego that if it got to be too much that we could just leave and he seemed to be happy with that.

We got in and the restaurant was the slowest that I have ever seen it! 

Thank God!!

Other than Diego getting a bit annoyed that I didn’t bring the headphones for his Leapster (mom #Fail), Diego did a fantastic job!! 

Rickey, Lyric and I tag teamed through dinner.  We did use all of the resources we brought, but hey that’s what they were there for!  

Diego made it through the entire dinner happy and smiling.  He also gave one of the folks at dinner a brief lesson on his whales when she mistakenly called them sharks..lol

I am so proud that he was able to regulate himself enough to make it through dinner, especially since things have been pretty tough around here lately

There has been lots of talk among the professionals and myself  about regression.

Blah

I hate that word and I am not going to blog about it today.

I am just going to rejoice in how fantastic dinner at a restaurant  went for our family!

Off to Diary of a Mom’s Community Brag Page  I go!!!

Tattletale

Diego tells on himself.  It is one of  the funniest things ever.  If I tell him not to do something and he gets away with it, it is guaranteed that within a couple of minutes of the crime you will hear

“Sorry”

When I ask him why he is sorry, the story spills out. 

I have become a pro at not laughing and being very serious about the fact that mommy makes the rules and he needs to follow them.  But really, how  hard can you be on a kid that tells on himself?? 

Quite a few random questions have started to plague me, adding to the others I think of when I can’t sleep at 3am. 

Will Diego ever understand why he has had to have all of these interventions? 

Does he know that other children don’t have Ms. Kims, Ms Lauras, and chewy tubes?? 

Will I be able to have a conversation with him when he is an adult about all of the things we had to do when he was a kid??? 

Will he ever understand  how being on the autism spectrum sets him apart?? 

Will he know that even though he isn’t “typical” ,that he is still a productive and useful person? 

With ASD’s becoming so prevalent will society realize what a fantastic and funny boy he is?? 

Will he be accepted??

I did not come up with a single answer and these recent unanswered questions have left me feeling uneasy.

These came in the mail today. 

Narwhal and Beluga meet Blue

Watching Diego delicately remove the Narwhal and Beluga from their packaging was so sweet. 

Diego doesn’t usually do anything delicately 🙂 . 

 He was very excited to add the Narwhal and Beluga whales to his recently obtained Blue whale and he hasn’t stopped asking to take a bath since he set eyes on them. 

We are amassing quite the ocean collection in our home.

Next on D’s list??

A squid and a grey whale

Just Wonderful!

Today was the antithesis of yesterday.

Thank God for that!

The Natural History Museum here in San Diego recently opened a dinosaur exhibit and I thought Diego might like to see it.  I was concerned about taking him and with all of the people and the noise that it would be a sensory nightmare.   I did some brainstorming and figured that if we got there right when it opened on a Sunday morning that it might be ok.

I am learning 🙂 

Right when we walked in, a model T-Rex greeted us and then right above us was a life-size model of a shark and a whale. 

Diego…..was….in….heaven

He absolutely LOVES sea animals and all we had expected to see were dinosaurs, so this was a fabulous surprise. 

I have NEVER seen Diego so excited, not on his birthday, not on Christmas morning….never

I was so happy to see the pure joy on his face that I had a hard time not crying right in the middle of the museum.  There was barely anybody there and Diego got to see everything, it was like the place belonged to us!  We tried to watch the ocean movie that was playing in the museum’s auditorium, but it was a bit much for him and we left.  He didn’t have a meltdown, I could just feel his body tense up and we left before the shit hit the fan.

YES!!

On our way out we visited the museum shop and Diego made out with a blue whale and a T-Rex :).  While he was very happy with our purchases, he was quite disappointed that the museum didn’t have a Narwhal whale.  About two weeks ago I bought him a book called “The Children’s Guide To Sea Animals”  and he fell in love with the Narwhal whale.  He has been asking for one everyday.  I broke down and told him that I ordered it online and that it should be in our mailbox soon (i’m not very good a keeping presents a secret 🙂 ). 

His smile was priceless

Once we  were finished with the museum , we walked around Balboa Park for a bit and grabbed some lunch.  We had mini picnic while the saxophonist in the park played on. 

It was heaven.

Just a beautiful and wonderful day.

We both needed it.

The single mitten D insisted on wearing 🙂

Happy Autism Awareness Day!

Last night Diego had a tantrum, not a meltdown, a typical 4 y/o old, fake crying tantrum. There was no hitting himself or me, no head banging, no throwing of items, nada!

It was fantastic.

I know that might sound crazy, but he has been super ASD kid for the past two weeks and I can’t tell you the last time he had a “typical” tantrum. 

I really can’t…

Sleep has always been an issue for Diego, although I put him in bed at 8:30pm  he doesn’t usually fall asleep until 10:30-11:00pm and is very hard to wake up in the morning.  He takes a nap at school and that is currently our saving grace.  Do children still nap in kindergarten??  If not, his sleep issues may need to be addressed, because he will not do well.  Last night he finally passed out around 11:30pm but was awake at 5am wrestling his kid size plush Optimus Prime. 

*shrug*

At least he was in a good mood.

The schools are closed today and I asked my mom to watch both boys for a couple of hours.  She is pretty nervous about sitting with D.  I guess she even asked my sister what to do.  When I spoke with her yesterday I tried to explain that she should just treat him as she would any other child with a few minor modifications.  We went over those things and she seemed a bit more at ease.  Lyric will be there as well and his goofy faces always save the day :).

I hope that they will have a great time and that this will build her confidence when interacting with Diego.

*crossing fingers*

Today is Autism Awareness Day and Jess over at  Diary of a Mom has a fantastic post about why we should continue to get the word out

She is really fabulous with words and gets the point across beautifully.

Wedding Bells??

Diego (visibly bothered): Diana said she wants to marry me!!!

Me: “Diana from school??”

Diego:”from the Big Nest”

(Diego’s preschool class is called the Big Nest and the kids refer to themselves as Big Nesters…its hilarious when a new therapist comes out and inquires about what the hell a Big Nester is..lol)

Diego: “SHE IS CRAZY!!!!!!!!!”

*don’t laugh out loud Shivon…hold…it…in*

Me: “Oh she did??”

Diego (shaking his head back and forth): “she is crazy”

Me: “She must think you are a nice friend”

Diego: “I’m not old”

Me: “huh?”

Diego: “IM NOT OLD!….you and my Rickey are old!”

*cringe* 🙂

Me: “Are you saying you are too young to get married?”

Diego: “yes, I told her I’m not old.”

Me: “That’s good honey you have plenty of time before you get married”

Diego: (walking away muttering) “she is crazy…”

Once he walked into his room I shoved my face into the pillow and laughed the hardest that I have in a while.  He was so bothered that if I even giggled in front of him, he would have lost it.  While Diego is disgusted by the prospect of marriage  at such a young age, Lyric has asked a girl to his 5th grade dance and then to be his “girlfriend”.

*sigh*

Are you serious?!?!?

When I asked him exactly what having a girlfriend meant , Lyric said that they play kickball at recess.

I’m not ready for this, not at all. 

What is God thinking dumping the girlfriend deal on my plate right now??

lol

Then the next day,  I find out that the school is doing the Sex Ed discussion with Lyric’s class in a month. 

HUH?!?!

Really?!?!

In the 5th grade?!?!

Then my logical thought process kicks in and I am reminded of the stories that my sister (who works with 11,12,and 13 year olds) tell me. 

*sigh*

My baby is growing up and I will continue to remind him of what is expected from him, while supporting him and trying to keep the lines of communication open.

Goodness