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Time To Help

It is time for us as mothers, friends, and family to band together. 

One of our own needs our help. 

Many of you know Beth and Nik, if you don’t please visit her blog at http://maternalinstincts.wordpress.com/

 Beth is an amazing mother and friend, she has been instrumental in helping me keep my sanity (along with a million other things) the past year of my life.  Anyone that has received an autism diagnosis, knows how isolating it can be.  Beth let me know that I wasn’t alone.  Despite everything that is on her plate, she is always reaching out to help someone. 

Nik is an amazing little guy, super smart, funny, and cute as all get out!  No really he is way too cute!!  

Nik using his borrowed iPad

 

Nik is also pre-verbal and needs an iPad and we can help.  We have all read about the amazing Apple autism apps, not to mention that the iPad will, most importantly, help Nik communicate with those around him. 

Amazing right?

So

PLEASE

go here

http://niksipad.niksipad.chipin.com/niks-ipad

and

donate.

The amount doesn’t matter….just something….I know our community and I KNOW that we can do this!

Once you have donated please take that link and send it to EVERYONE you know.

Thank You

Shivon

Betrothed?? ;)

My little sister started dating her man and got married recently, during that whole process Diego met a little girl named A. A’s father is a great guy and my sister’s hubby’s best friend,  it just seemed natural that he was family…

A is one of those little girls that runs things and her strong personality is perfect for Diego, because she doesn’t give him much of a choice to interact.  So once he got comfortable speaking to her it was over.  A is kind of a tom boy, this was perfect since Diego’s idea of a good time is rough housing!  The night of my sister’s wedding I brought both A and Diego home early, poor A wanted out of her dress and into some shorts, and Diego had enough.  He really held it together considering all of the noise and people.  My mom, Rickey, and A had a big part in this.  Thank God for the all of them. 

Anyway it got late and I made a bed for the two of them in the back room so that they could wind down before A’s dad came to get her and in the hopes that Diego would pass out before midnight.

HA!!

Not long after  the kids settled down a bit Diego says, “Mooooooom A kissed me!! on my cheek!!”

I walked to the back room and saw Diego wiping his cheek as if there were poison on it and A giggling.  I asked what happened again and Diego replied, “the doggy kissed her cheek and then she kissed me!”

Ay mira!!

Diego had been carrying a stuffed puppy dog around all day, when I asked if that was the doggy that kissed A on the cheek, he told me it was.  A, still giggling told me D made the puppy kiss her cheek so she kissed his. 

I was dumbfounded

First off I really thought it was pretty cute that Diego was attempting to show affection and then second I was at a loss as how to handle the actual kissing of the cheek.

Seriously?!?!

They are four years-old!

🙂

I explained to the kids that it was great that they wanted to show each other that they liked one another, but that is was probably a better idea to hug instead.  While I was explaining this Diego was practically wiping his cheek raw, it took him a good while to let it go. 

Poor guy, he didn’t know what he had gotten himself into!

Once the kids were settled again I walked out of the back room into the living room and told Rickey what happened.

His response??

“That’s my boy…”

*sigh*

The ongoing word in my family is that Diego and A are now destined to marry, lol…I don’t know about that but they take the best pics together!!

It might seem silly, but I cherish these easy friendships.  Probably because the reality is it may not be so easy for Diego later.  I thank God for the kids that seek Diego out and make him their friend. They are so patient and so kind.   I have noticed that Diego is getting tougher to get to.   It was quite clear the other day at his school, when a couple of kids, at different times tried to interact with him and he was oblivious to it.  Diego starts his new social skills group in a couple of weeks and I hope it helps.

There is so much else to blog about, but this just seemed appropriate today.

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 🙂

Vampires

Today was one of the roughest days Diego and I have had.

The fight with the school district began today.

This morning was D’s school district assessment.  I prayed for patience and for the people doing the assessment to have a clear and focused mind.  I was prepared with a letter from the psychologist, a letter from his current teacher, the 12 page progress report from Diego’s social skills group, and the most recent OT report.  All of these were copied and ready to hand over to the school district. 

Right when Diego and I walked into the room, we were met by the psychologist…we will call her Dracula.  I introduced myself to Dracula and attempted to introduce Diego, but was immediately told Diego could go over to play in a certain are and that I could sit at a certain table, in a specific chair.

OK

I made sure that D was comfy and went to my assigned seat.  I took out all of the reports I had and attempted to hand them to Dracula, she gave me a curt “I have them.”  I told her that there was no way that she had them because I just got them this week.  She took them from my hand and then Dracula sat across from me and said that none of the reports/letters stated Diego had Asperger’s, just the behaviors of. 

Here we go…. 

I asked her what she meant, as it is pretty damn apparent from those letters/reports that Diego has a diagnosis of

Her response was none of these say “Diego has Aspergers”. 

I said ok, I will get the psychologist to write a letter with that sentence exactly. 

*breathe Shivon*

This was not starting well…..at all…

I immediately called the psychologist right in front of Dracula and informed Dracula I would have her letter by next Tuesday.  Our psychologist was appalled that Dracula was so caught up in what seems like such a silly detail, but I explained that this is how the school district does. 

Our psychologist assured me again that she would have the letter ready by next Tuesday.

Then Dracula looked at me and told me there will not be an OT assessment.

HUH?!?!?

She said that the OT is on maternity leave and that OT will have to be assessed at a different time.  I told her that I understood people having babies and all, but that OT was a very important component of the assessment. 

Dracula gave me a blank look. 

I told her that I would not sign an IEP  that didn’t have an OT assessment attached to it. 

Then Dracula (in an attempt to drain the life from me)said that we can just reschedule this whole thing.

HA!!!

NOT GONNA HAPPEN! 

I told her there was no way that we were going to wait another 3 months to get this process started and right then God intervened.

The child next door did not show up for their assessment so the OT from there would do Diego’s today. 

YES

I was comforted by this, I felt like at that moment God was right beside me and made sure that I knew He was.

The rest of the assessment went along. 

I had a long talk with the SLP about Diego and the fact that he didn’t “talk like a little adult”, which a lot of children with Asperger’s present with.

I was defending his diagnosis.

Again.

Really?!?!

Is my education about Autism Spectrum Disorders so much more than theirs that I know that there are no two children that present alike and they don’t?? 

No my child is not a genius, nor does he sound like he is a 45 year-old man, but he does present with like 20 other things!

*sigh*

The entire morning was like this.  Three hours of fielding questions, assessments, and vampires attempting to suck the life out of us. 

There was a ray of light in the room which was the adapted P.E teacher.   Her daughter has autism and she was able to point out a lot of Diego’s behaviors to the vampires that they would not have noticed otherwise. 

Needless to say Diego and I were exhausted at the end of it all.

The morning ended with going over the time and place for the IEP meeting, at which time Dracula did say that Diego will have an IEP. 

Good

Hurdle #2 cleared.

I thanked them for their time (must remember my manners 😉 ), and took Diego to Target to get his little golf set.

He did such a great job keeping it together and trying his best.

Once we got home the weight of the day hit me. 

Hard.

Diego was over it too and had a pretty nasty tantrum, poor munchkin 😦 .

It was our first major tantrum since Christmas Eve.

These school people are no joke!! 

But no matter how tired I am, my will to fight for my baby stays strong.

Later on, still in work mode, I called and left a message for the principal of the school that  D will attend next year, she called me back four hours later! Fantastic!! 

I gave her the reason for my call and she said that she was so happy that I was thinking ahead and advocating for Diego.  She said that she will call the resource specialist for arrange a time for us to meet next week!! 

THIS is the difference between a district run school and a charter school that runs independent of the district. 

This gave me hope.

Anyhow the IEP meeting is next Friday and Rickey is going to come with me.  He is a calming force and I won’t feel like it is five against one.  

Together we will fight the vampires 🙂

Rest??

**This entire post will be in italics, because somehow I randomly had  a paragraph put in italics and can’t reverse that  🙂 “**

**I just noticed said paragraph is black while the rest of the post is white??, I give up …lol**

Good news here is that I am just a stuffy sneezy mess.  

I will give the kombucha that Candace brought me most of the credit, I drank it this morning and felt so much better that I had on Friday or Saturday. 

Thank you Miss Candace!! Luv ya!!

Now on to the weekend re-cap.

Lyric’s birthday on Friday night, about 12 boys playing video games, eating pizza, and being stinky 🙂 turned out to be less work than I had originally thought.  Not counting the 30 minutes i waited in the Wal-Mart customer service line to exchange the generic PS3 controller for the brand name one that actually worked.  I should have known better, but Lyric and his friends had a blast and that is all that matters.

Saturday Morning I went to meet with Juan (the psychologist that works on parenting Diego with me) and like I thought Diego’s father did not show up.  I missed his call around 9am (an hour before the appointment) but he didn’t text or leave a voicemail, so I thought he might actually be there. 

Silly girl…

I really have to stop believing in people that aren’t worth it.  I called him after the appointment and he said that the reason for his absence was that I didn’t pick up the phone when he called that morning.

Huh?!?!

I stated very calmly that if the appointment had been cancelled, I would have called him. 

His response??

“I know.”

So I just told him that I was documenting it all and that the only person he was hurting was Diego

No response

Whatever.

Whale watching was interesting.  I wonder if that is the right word to describe the day??

Sure 

Why not?

Diego enjoyed himself for the most part.  But it is pretty difficult to have patience when you may be the most impatient 4 y/o in life and patience is needed with whale watching.

I didn’t think about that 😦

So needless to say Diego had a few melt downs and of course I got “the look” each time. 

Especially when he would hit himself. 

These people looked at me like I should have been doing something more. What these random people failed to understand is that when we are in survival mode, there is nothing else  that can be done until the meltdown passes. 

All I can do is contain his hitting.   

But anyway, we saw whales and they were very beautiful. 

All in all it was a good time.   Lyric brought his BFF Angel and they amused themselves on the boat. 

Who knew 3.5 hours of whale watching would wear me and Rickey out so bad?!?!?! 

My old ass..lol

On the way home Diego had to go #1 pretty bad and since the line to get out of the parking lot was so long, Rickey decided that Diego should have his first experience becoming “one with nature”.

Pure comedy.

I got the best pic of Rickey instructing Diego to pee on the wall, but I don’t think it is appropriate to post since Diego’s bum is all out.

It’s a really cute pic and one for the record books for sure

This morning Diego and I decided to remove the “Cars” decorations from his room and put up some ocean posters.  He and I went to Lakeshore and went a bit overboard, but I picked up some great things for his sensory bins and some beautiful pictures for his bedroom.  I also picked up some cards with pictures and suggestions on how to help stimulate language.  I am interested to see how Diego does with them. 

Now to put up those shelves that I have meant to put up for the past month.

HA!!

All of  my energy has been spent cleaning a house that was severely neglected while I was sick. 

It was awful!! 

I still have so much laundry to do

and

tomorrow is Monday?!?!?

*breathe*

One day at a time…

one…day…at…a…time

and maybe some help from the men in this house?

or

a

maid

weekly??

HA!

Breathe

Diego’s father and I decided that since he wanted me to break down all the issues Diego is facing that we would do so Tuesday afternoons while Diego was in therapy.  Well yesterday was Tuesday and guess who didn’t show up until 4:55 (five minutes before Diego’s appt is over)??  When I said that I thought he was going to be there earlier, he said he was but didn’t come in because he didn’t have change for the parking meter. 

He was serious.

I swallowed my anger and said if that happened again to feel free to call me and I will go outside and put money in the meter.

I got no response.

I guess that I will have to wait and see what happens on Saturday.  I wonder if he will show up??

We go to mediation on 2/9….

I’m tired of begging him to get on board.  I can’t stand being around him in the first damn place but am willing to swallow my disgust to do what is necessary to help Diego. 

*sigh*

In nicer news we are going Whale Watching this Saturday, we haven’t told the boys yet, but I am so excited!!! 

I think that just in case we don’t see any whales that I will present it to Diego that we are going on a mission to find the Grey Whale and that we may not find any, but will have a fabulous time doing so. 

Hopefully avoiding a meltdown. 

The whale watching people guarantee a sighting, but I know better than to depend on that :).

I am slowly making progress on Diego’s sensory room.  I am just about finished with the tactile part of it!! 

Lyric continues to help with Diego’s sensory regulation, he now lets Diego drag him across our hardwood floors!  The OT thinks it is a  fantastic idea and Diego thinks that it is just the funnest thing ever. 

I just love to hear them laugh 🙂

I know that this is a short post, but work has been crazy and keeping me super busy!! Two of our doctors have been hospitalized, causing scheduling horrors which inevitably results in my getting cursed out quite a bit by the patients and we have a very important inspection all of this week. 

With all of this going on things are a bit more stressful than usual…

But I will remember to breathe….

My first….

alittlehope

My first blog…….I thought long and hard about whether I really wanted to do this. 

Let the world into my own. 

But upon the inspiration from a few others that have done this, I figure that maybe this might help someone as I have been helped by others, and at the least this will be therapy for me even if nobody reads it. 

I have a child with special needs.  

That still feels  so surreal to say, write, etc…

D was diagnosed with Asperger’s Syndrome (an autism spectrum disorder)September 8th of this year, along with this diagnosis he has a diagnosis of a Pragmatic Language Disorder and a Sensory Processing Disorder (this is pretty consistent with children on the spectrum). 

I always thought D was a quirky kid, but also figured that this was just his personality.  It wasn’t until he transferred into his 4 y/o preschool class, did I suspect that something more might be going on. 

D can take or leave any kind of social interaction, has an obsession with all animals, sea animals in particular, may look you in the eye if he feels like doing so,acts like he drank a red bull first thing in the morning, has a special affinity for touching anyone’s ears (including his own for stimming purposes),and is a major fan of routine as well as rules.  D is a happy child (dispelling the myth that kids on the autism spectrum aren’t happy), has the best sense of humor, loves to hug (even if it is a little tighter than the average hug), and can be extremely engaging if he chooses to do so.

I took D for what I thought would be a  full 4 hour psychological assessment in August and after spending 1 1/2 hrs with him,  the psychologist stated that she really couldnt put her finger on what was going on with D, but to get all of  the therapies for a child on the spectrum and check back in a year.  Well this was unacceptable for me, so we saw a neurologist extremely well versed in Autism Spectrum Disorders who diagnosed my D with Aspergers Syndrome.  So what exactly does this mean??  What do we do??? What does our future hold??  Needless to say my life that past few months has been filled with sadness,joy,doubt,confusion, frustration, and anger.  I am very blessed to have the support of  my wonderful fiance and  10-year-old son (who happens to be a fantastic big brother!), my mom, and my sisters.

In writing this blog I hope to share everything that I learn along the way to help anyone else in my position.  I will be completely honest, share our good times, bad times, our progress and our set backs. 

**as a side note I am learning how to navigate this blog deal, so as my knowledge increases hopefully the mistakes will decrease**