RSS Feed

Tag Archives: behavior

Dino Dan

Diego has always had an interest in dinosaurs, but sea animals were his special interest until Dino Dan.

The premise of this Nick Jr show is that a ten-year old boy by the name of Dan has a very special interest in dinosaurs and can actually see them.  All Dan talks about to friends and family are dinosaurs and each one of them is intensely interested.  Dan’s mom pretends she believes him and his friends help him go on dinosaur missions. 

Personally I think Dino Dan has Aspergers and one hell of an imagination. 

Yes children with ASD have imaginations. 🙂

Just ask Diego who now sees various dinosaurs in our yard.

So anyway the show started in October and Diego is hooked, captivated by each episode.  Sea animals have taken a back burner and it is all about the T-Rex and his other dinosaur friends.  I DVR Dino Dan for Diego because it comes on while he is at school, but he has no clue I save all of the episoded…because if he did….Dino Dan would be playing on our TV 24/7. 

No Thanks.

My problem with Dino Dan is that Dan eats, sleeps and breathes dinosaurs, which may translate to Diego that it is ok to do this. I mean once Dan enters a conversation with a group of  his peers it is all dinosaurs all of the time, and what is nutso to me is that his little friends are not bothered by it at all. I know Nick Jr  didn’t make this show thinking about such things, but as Diego’s mom I can’t help but think about them.

So why do I DVR it for Diego?

He loves it.

After spending his days working out all of the challenges that come with ASD, who am I to deny him a half hour of pure bliss??

My major issue now (and it really has nothing to do with Dino Dan) is that Diego has started referring to dinosaurs by numbers.  I have figured out a few.  The T-Rex is 305 and the Brachiosaurus is 405 and I think the Spinosaurus may be 505, but I’m not sure.  Diego is under the impression that we share the same brain (*sigh* mind blindness) and that I know the dinosaur/number classification system that he has come up with, he gets quite frustrated with me if I don’t know what dinosaur he is referring to.

In other news, the Risperdal is helping with Diego’s behavior A LOT.  I was so hesitant to start it, but we are at a very low dose and the difference is amazing.  What the Risperdal doesn’t help with are the ADHD like symptoms. Diego is having a very hard time at school.  Between his gnat like attention span and his fine motor difficulties, he is having a time doing much of anything.  I have been wracking my brain for a way to help him focus and finally, after talking with our OT,  I found something that we haven’t already implemented that may work for focus. 

What is it you ask??

His iPod with some  classical music.

It has helped the few times that we have used it during OT and we tried it at school on Friday.  He got through all of his desk work, which is promising.  It is too early to tell if this will  be a long-term fix, but I am hoping that between the addition of the morning dose of Tenex, the iPod, the weighted lap pad, the sticker chart, and the angled writing board that he will be able to complete his desk work.

Socially??

We are stuck, this is the area that kills me.  Diego just finished a 4 month social skills group and I haven’t seen much progress.  The discharge summary didn’t show much either :(. 

Sometimes I feel like a hamster in that damn wheel thing…

Our next step is peer-to-peer therapy. 

Hopefully that will help him at least a little bit.

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

Hopeful Parents

I get the honor of writing here the 8th of every month…check it out 🙂

In all chaos there is a cosmos, in all disorder a secret order. ~Jung~

“Doesn’t she understand that I cannot make her potato stop shaking?!?”

This was recently said by a resident that I work with about an autistic patient that was being seen in our clinic accompanied by his mother. 

My heart broke, stomach nauseous, and my body boiled from the anger. 

I cried when I got home. 

He walked away before I could respond and right now I find myself looking for the appropriate words to address his ignorance. 

Because I have to.

I am so angry and hurt about his horribly unprofessional and cruel comment.  In my experience with him, he has always been very professional, so it really came as a surprise.  I understand that as a training hospital we are to teach these residents how to do everything from managing time to compassion.  I am just not sure that anything I say right now will be effective , it will only be fueled by anger. 

We saw the neurologist on Weds and she changed D to Risperdal.  I knew she would, and had prepared myself accordingly.  We discussed D’s MRI and there are still a lot of variables.  One of which is that it is showing a dilated peri vascular space which is further impairing D’s visual motor/spatial skills, that was about all that she would speculate.  She is going to take it to a case conference with a pediatric Neuro Radiologist, and see what he says.  If the Neuro Radiologist thinks it is more than a dilated peri vascular space then we will have to obtain an MR Angio to look at the blood vessels in Diego’s brain.  She said that it is nothing acute so that is good, but so many questions and possibilities still linger…not good for my anxiety level at all.  I am going to wait until after the wedding next Saturday to start the Risperdal, as the last I need the day of my wedding is an even more disregulated Diego.  My sister, who is phenomenal with him, is assigned to him the day of the wedding.  I am so lucky that she ‘gets’ him 🙂

The regional center could no longer screen me out and I have an orientation appointment for Nov 18th, after which will be the eval.  The case manager at the Regional Center has made it quite clear that if the assessment shows Asperger’s we are screwed.  Forcing me to play ‘the game’ (which I will not explain, but some you know what it is)…and that  is fine.  I think it is ridiculous, but hell, it is what it is. 

We did have a breakthrough in what has been a cloud of disregulation and chaos.

getting ready for bed

D: “Mom, I need a snack.”

Mom: “But D, you just had one aren’t you full…”

D: “Nooooo my tummy doesn’t want it, my mouth does.  It wants to chew.”

Hello sensory need, and he recognized it!!

D has quite a fixation with bubblegum and it really seems to regulate him. 

So I gave him a piece of gum to chew for 15 minutes and he was good!! 

YAY!!!

When things like this happen, I feel less like a hamster spinning my wheel and more like we are getting somewhere.  It was such a great feeling,  and I can only hope that as time passes the episodes become more frequent.

Untitled

It started over a Gatorade bottle.

Diego REALLY wanted water in a Gatorade bottle for bedtime.

He had never asked for this before and unfortunately we were out of empty or full Gatorade bottles.

*sigh*

All I thought was this is not going to be good.

I did my best to get the coolest cup I could, outfit it with a straw and attempted to make it sound like it was the BEST CUP EVER!

It didn’t work.

Diego started to lose it.

I walked away for a moment  because sometimes his reaction is a little bit extra if I am right there.  I really hoped that he would just whine about it for a while and then it would pass.

No dice.

So I sent Rickey in to help him, usually Rickey can find a way to diffuse the situation if I can’t.

Things just got worse.

Then D went from Gatorade bottle to only wanting me to turn on his nightlight, despite the fact that Rickey had already turned it on for him. 

If I thought that D was losing it before, I was sadly mistaken.

Diego was crying so loud and so hard that I was afraid he might vomit, he started to hyperventilate and to bang his head against the wall.  Whatever Rickey was doing wasn’t working either.

At this point I had to go in, he was begging for me to turn the nightlight off and then back on. 

Begging.

How horrible was his anxiety that he was begging for this!?!

So I went in, turned the f*cking nightlight off and back on.  I don’t care if this was reinforcing poor behavior, I just needed to help him. 

Since Diego could no longer perseverate on the nightlight, we were back to the Gatorade bottle.

I was racking my brain to figure out what he needed to calm down. 

We were smack dab in the middle of the worst crisis I have ever had with him, and I had no f*cking idea how to fix it!

None.

It took a lot of silly stories, songs, joint compressions, and deep breathing but after about 15 minutes we got to a point where he could talk without losing it. 

I burrowed next to him in his tiny toddler bed and just laid with him for another 30 minutes…breathing and cuddling. 

Diego finally fell asleep.

He was spent

and

I was heartbroken.

I HATE autism.

Untitled

This morning I just wanted whisk  Diego away from school and go home to hide from everything that hurts him.

I didn’t.

Instead, I put on my strong happy face, helped him wipe the tears that were falling endlessly, talked to him a bit about “dolphins riding on killer whales” (his happy place), and then left.

But my heart is still there.

At school

with him 

calling  me.

This is the worst f*cking feeling ever.

*pic credit-http://kiptip.com/rants/03/19/2009/symptoms-of-a-broken-heart/*

Changes

First Day of Kindergarten. We will tackle a haircut next week 🙂

I would have loved to start this entry saying that Kindergarten has been a smooth transitioning process, but I can’t.  It has been easier than if Diego had started at the public school as we had originally planned, and his current teacher thinks he is doing great.

But at home?? 

Not so much.

In typical Aspie form, my amazing little boy  keeps it together the best he can at school and leaves the “best” behavior for home.

The  combination of  Kindergarten, 30 minute vs 2 hour naps in a child who maybe falls asleep by 11 then wakes at 6am, and some side effects of the Tenex, have left Diego a sad, self-injurious, tantrumming mess at home. 

Diego has been so sad, which is very unlike him.   Over the weekend he was sobbing, looked at me  and said “I don’t know why I am crying.”

Heartbreak much??

I have read that this happens to some kids while on Tenex, and along with having the depressed-ish mood, Diego has also been more out of it than normal. Rickey and I sat last night, compared notes, and have decided that we are going to email  his neuro to see if it is advisable to cut down the  half tablet he takes in the morning to a quarter or just wait a few weeks until Diego gets into a routine. 

There are just so many variables right now  that it is hard to figure out what is causing which behaviors.

On top of all that is going on, Diego’s father is pulling away.

Yup.

Rather than gathering all of the courage and tenacity needed to help his son, he has decided that it is best to phase himself out. 

The Sunday before last, his father came to get him without a car seat. 

I maintained my composure and asked if he intended to take Diego with out one and he said he was. 

Still maintaining my composure and keeping the “happy voice” I offered him my  car seat.

To which he declined.

Then I offered to take D to his mother’s house for him, so that he would be safe.

To which he declined.

Then he decided to open his stupid mouth and say, right in front of Diego, “just keep him”.

I tried to keep it  light and jovial again offering both of the things listed above and then he said it again.

“Just keep him.”

I looked at him and said that Diego was really looking forward to being with him, but of course that didn’t matter.

Diego may have not picked up on it the first two times but as I removed him from his father’s car, I could see he got it the third time his asshole father said “just keep him”.

Diego looked at me when I put him in the car seat and said “I want to go to grandma’s, you should have brought daddy a car seat”

His hurt was palpable.

I gave him a big hug, and gently told him, “I will take you to grandma’s but it is  NOT my responsibility to bring daddy a car seat, it is your daddy’s responsibility to make sure that you are safe in his car.”

He wasn’t satisfied with this at first and we went around in a similar fashion for a few minutes, but eventually I found a way to validate his dissapointment and make him laugh. 

Once we got there, he was very excited to see his grandma and tia. 

Apparently his father decided to show up later on. 

This past Sunday I just took Diego directly to grandma’s as his father called me 15 minutes before he was supposed to pick  Diego up to tell me he wouldn’t be, because he was working….

Convenient

Diego’s father has no understanding what a last minute change can do to Diego’s temperament, in fact he has made it all too apparent that he doesn’t care to understand. 

I have now mastered the art of being vague when it comes to preparing Diego for Sunday afternoons.  I usually tell him that he is going to grandma’s and either mommy or daddy will take him.

Have I mentioned I can’t stand his father’s ignorant ass?!?!?

Lots of stuff….

Just

So

Much

P.S

We have moved the wedding to Sacramento last-minute. Rickey’s mother is sick and asking her to travel down here is not the right thing to do.  So we are going up there, I am so grateful for the fantastic coordinator at the venue we found up there, but it has been major work!!

Hodge Podge

It has been 8 hours since I gave Diego his morning dose of Tenex, in those 8 hours he has been a dazed and drowsy 5 year-old.  He has just laid around and watched cartoons, with no energy to do much else. 

This is very hard to watch.

I understand that this will more than likely get much better, hopefully sooner than later, but it is rough…right…now. 

I already have this horrible feeling in my stomach every time I crush the pill, mix it with applesauce, and give it to him, despite the fact that it is working. 

It was a manageable feeling when he was not really experiencing any side effects, but  today with a bit of side effects, the horrible feeling is anything but manageable.

The Tenex is doing a good job overall and I will keep this at the forefront of my mind while watching D in his zombielike state.

When I went to get D from school on Friday his poor teacher was horrified as she recounted the story of Diego’s self-injury that occurred that day.  He was in the writing group  and kept getting frustrated because his letters weren’t “perfect” and proceeded to hit himself  four different times.  His teacher did her best to redirect him each time,but when D is on his quest for perfection it’s nearly impossible to get him to think of anything else but.  She eventually had him move on to another activity with moderate resistance.  This is the first time he has demonstrated self-injury to this degree at school and it really concerned her. Unfortunately this isn’t new to me.I discussed different ways to handle it, if it happened again, and I spent a lot of time comforting her.

As I write this it is unreal that this is part of our reality, that self injury doesn’t jar me the way it once did.

I am so thankful for this blog.

Writing is my only way to process all of this.

Yesterday I met with the neuropsych that I initially took D to see a year ago when I had my ASD suspicions.  The one that told me that based on her 90 minute assessment, that she didn’t think that D was on the spectrum, but bring him back in a year and that she would re-assess. 

Despite the fact that Diego has now been diagnosed with ASD, I made the appointment to see her and then made the appointment for D’s assessment which isnt until October.  So when we met yesterday, I came with all of my reports not expecting much from her. 

My general opinion of neuropsychiatrists isn’t very high due to some crappy experiences, but after reading over everything that I brought, that woman looked at me and said he is definitely Asperger’s/HFA.  She told me that with all of the interventions Diego has had, if it wasn’t ASD he would have gotten better, he hasn’t.

Duh

She went on to explain her hesitance in making this diagnosis a year ago, as she feels ASD is typically being overdiagnosed.

I could tell she was scrambling. 

I let her for a bit.

I finaly explained to her that I understood her hesitance, but that she may want to LISTEN to the mother of  the next child a bit more. 

If I have learned anything it is that I KNOW my baby and I would assume that most mothers of sound mind and body (this is subjective..lol) are on the same boat. 

So with that said, she stated that she will repeat the ADOS in October and that is that. 

I couldn’t care less about this upcoming assessment as it will have no effect on what we already know.  The only thing that may come out of it is that the school district and the regional center may pull their collective heads out of their collective  asses and give D the services he needs.

Which brings me to Kindergarten, I just want to scream every time I think about it. But ‘think’ I must because Kindergarten starts in 2 weeks, and the reality isn’t going anywhere….at all.  

In three weeks D will be starting a social skills group with a focus on school readiness and I am hopeful that this will give him better coping skills for school.

blah

On a lighter note, last night I gave D some craft supplies and he came up with the ‘Blue Whale’ masterpiece below!

Yup, I just wanna bite him!! 🙂

Tenex and Kindergarten

*driving home from Lyric’s summer camp*

Diego: “Mooooom…..we must pray to the earth.”

Me: “Oh….really???”

Diego: “I prayed to earth when I was sleeping.  The earth spoke to me.”

Me: *maybe I am playing too much reggae around him..lol*

“It did? Well what did the earth say?”

Diego: “The earth told me I need ketchup AND ranch with my chicken nuggets.”

Me: “Oh…..”

Well Day 5 of the Tenex and I think I may be able to check off “personality change” from my list of concerns.

So far so good. 

We had an issue of drowsiness for one day after starting the Tenex but he got over that.  On Friday I will add his morning dose, but even on just the evening dose there is improvement in his participation in circle time at school. 

Yesterday his OT and I both noted less anxiety as he ALWAYS asks what’s next and didn’t one ask at all during their entire hour yesterday.  He also tolerated the screaming by another child much better than usual.  Children crying/screaming is Diego’s kryptonite, he loses all motor planning, speech ,and starts to either stim like crazy or get very very silly.  Yesterday his speech was definitely affected but he was still able to get the task done. 

Improvement?? 

Most definitely.

But the kicker was Monday in the waiting room of his social skills group.

Diego said “Hi” to another child in his group.

UNPROMPTED!!

Not even a minor prompt…

NOTHING!!

He simply LOOKED at the other boy and said “Hi, look at my snake book”

I cried

right there

in front of everybody and their mama

(literally…lol)

So maybe the medication that feels so incredibly unnatural to give him is working just enough to take the edge off and allow him to utilize some of the skills he has been taught consistently over the past year.

I am cautiously optimistic.

Kindergarten starts in a little over two weeks, and this will be the true test.  He will be completely prepared with sensory and visual support materials.  I bought them all as I prefer not to depend on the school for this. 

lol…control freak much?!?!?

Hopefully between the material support, the therapies, and the Tenex he will do well. 

Hopefully there will be no need for a personal aide, although the look on D’s preschool teacher’s face when I told her that he would not have an aide mimicked what I have been feeling.

Panic.

D will be starting a school readiness social skills group this Saturday and we will be digging into his Kindergarten social story this weekend as well. 

The Transitional IEP meeting should be happening the week of August 23rd and then school starts on the 30th.

My anxiety is through the roof!!

Life

Tonight we will be starting Diego on Tenex.  Once at bedtime for a week and then increase to a morning dose as well. 

This is real…

I have a child with autism.

Holy shit.

A year later the wound is still so fresh.

I hope this post doesn’t give the impression that this is the only part of Diego that I see. 

 Because it is not.

I have an amazing child.

I thank God almost everyday, but some days I curse Him.

I wouldn’t be honest if I didn’t say that.

Diego’s autism has made me question God’s existence and ask ‘why’ so many times.  I don’t know where I am with this as I still pray to Him, but it is more so out of habit than true faith. 

Everyday is an emotional rollercoaster, from happiness to despair at any given time.  This is so damn hard and there is no eloquent or pretty way to say that.

It is so f*cking hard

My wonderful sister stayed with both Diego and Lyric for two days, and when I returned  looked at me and said she was glad that Rickey was home in the evening twice in the week to give me a break.  She did such a great job, but my poor sis was worn out. 

My days are consumed with various appointments five times a week, IEP meetings, preparing for IEP meetings, parent teacher conferences, full-time work, my other child, house work, cooking, Rickey, etc… Each one of these things presents their own  challenges and all depend on Diego’s behavior.  I am not super mom…never pretended to be.  Some days I probably don’t even meet the basic mom quota.

I am just surviving, as we all are I guess.