When it all gets to be a bit much…

I have written at least five blog entries in my head over the past two weeks.

Unfortunately none have made it here.

Christmas, bronchitis, school issues, insurance issues and regional center prep have taken up more time than they should.

Christmas went pretty well this year, since receiving our ASD diagnosis I have had to change the way I think Christmas should be.  I think it was either C’s mom or Roc’s mom that commented on a Thanksgiving blog that as parents of children on the spectrum we might have to make new and different traditions that fit OUR family.  So that is what I did this Christmas and it helped. 

A lot

Thanks 🙂

Bobby the Elf was a hit and really helped to bring ‘Santa’ to life for Diego. Lyric a.k.a Super Big Brother continues to amaze me, he is so dialed into Diego and has saved the day numerous times in the past two weeks.  When I get as sick as I was and can’t be all that I usually am to Diego, he acts out.  Mommy and Christmas break were really screwing with his routine and he let us know….frequently.  This time of year Rickey works so hard and is barely home, so he couldn’t be much help, but then Super Big Brother came to save the day.  Lyric saw I needed help and just stepped right in.  Lyric is guaranteed to get Diego out of any bad mood pre tantrum, and post tantrum he does a fantastic job making silly faces to help Diego forget. Lyric made bronchitis with muscle spasms and a fractured rib smack dab in the middle of the holiday season a bit easier for his mom. 

God bless him!

I made sure he knew how much I appreciated his 12 year old self coming to my rescue, and that is isn’t his responsibility to always step in when D is having a hard time. 

As for me, recovery is on the horizon.  I am looking forward to finishing this 5 day Prednisone taper and to my bones and muscles getting back to their normal recovered state.  In the midst of this I have had our regional center intake, the social worker really seemed like she was on our side and would make a good case to the Regional Center Board.  A school change may be on the horizon for Diego, as even being in the small class (8 kids total) isn’t helping him.  In fact he is falling far behind and needs a lot more help than he is getting.  I spoke with the school psych (Anthony) over at the charter school, and he was very receptive to my reports of D’s difficulties at the private school.  He asked why we didn’t go public and chose private, so I went over exactly why we chose that placement.  When I was finished he apologized for the evil vampire school psychologist and the experience we had.  I explained to him that I was glad that we found out this way, because although D is having significant problems in the small NT class, it would have been much worse if it was in a large mainstream class with new kids in a new environment.  Anthony said that he is going to visit Diego in his current placement and speak with the teacher, but that it sounds like D would benefit being in a public spec ed classroom and visiting a typical class.  Anthony was nothing but empathetic, understanding, and validating.  He doesn’t even really have to do this as  D is private he isn’t on Anthony’s case list.  But Anthony’s ‘special interest’ is autism and it shows.  If  for some reason I end up having any issues with the public school and getting Diego what he needs, I have a plan B.  I met with an AMAZING advocate and she really helped me figure out why I was having such a  difficult time wrapping my mind around the assessment that the vampire district did,the damn thing  contradicts itself every other line and is not based on any concrete data.  I won’t go into my dissapointment about the other advocate  we had :(.

*sigh*

So that is school.

I just got a letter from my mental health insurance company that after a year of Diego visiting his psych twice a week for a year that they will no longer cover this because she is an assistant and not licensed.  I am going to call today, submit my appeal and take it to the Dept of Managed Care if I have to.  In the interim the head psych where Diego is seen has offered for Diego to continue at no cost.  I will believe that when I see it.  But never the less the situation is rough, complicated, and trying.

and

I am tired of fighting.

very

very

tired.

It shouldn’t be this hard to help my baby.

I got some of the wedding pictures back and had to share this one with you.  Our photographer got quite a few fabulous shots of D at the wedding.  I was so thankful for that because no body else had many, as Diego checked out early and had to leave. 

So enjoy my little monster doing his presidential strut. 

The pic makes me smile every time I see it. 🙂

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!! 🙂

Mental Block with a touch of Random

The pic above is from D’s first Halloween and is purely for happiness purposes (it is my screensaver at work), just figured I’d share the cuteness 🙂

*sigh*

My brain is working overtime and I am sure I will post about most of it manana…it will probably be long, gramatically incorrect, but informative 🙂

I just can’t do it today, like emotionally and physically can’t…do..it.

So instead I will write about a quick exchange I had with my little monster the other day.

**Walking out of his classroom**

D: “Mommy look I have no hands!!” *his hands are obviously behind his back, as he is having this exchange with his back to me..lol*

Mom: “D are you pulling my leg?!? 🙂 ”

D: *stops abruptly, turns around, looks at his hands and then my legs* “Mommy, I am NOT pulling your leg…SEE!!!!”

**D then turns right  back around and keeps walking**

I didn’t even have a chance to explain what I meant,  as he immediately changed the subject to seals…I really have to remember to try and not use idioms with him 🙂

Our second opinion assessment is today…I need lots of thoughts and prayers that we get the answers we need!!  Thanks

*update* The Number 6

Diego never ceases to amaze me with his determination.  We spent some time this evening tracing F’s (letter of the week) and the dreadful number 6.  I was sure to approach it lightly and we had a blast tracing!

At the end of our time he got a huge happy face for his work and we properly displayed it on the refrigerator for all to see. 

I figured I would share his excellence 🙂