Archive for October, 2013

I will go into more detail later but right now HOW MANY TIMES does Monkey Boy have to be yelled at for the SAME thing????

Tantrum Tot has gone into full behavior has gone to shit mode…and it takes massive amounts of focused energy by his mother and I to move him out of anger/rage/hitting mode to a place where he is calm like again…and of course that is when Monkey Boy will go over to him and innocently try to engage him…which leads to his INSTANT return to monster mode!!!!

I swear to you he has been yelled at least 5 times TODAY since 10 a.m.!!!!

OK rant over…I’ll try to post more later. I miss posting!


Communication Frustrations

This trip shed some light on Tantrum Tot’s behavior. (With the simultaneous benefit of ripping my heart to shreds in the process).

We were driving on our way somewhere and Tot got all excited about something…and proceeded to say Mommy Daddy and what sounded like his words for play which is play play…(which he says every time he sees a playground) only this time one of the consonants was different.

(What Tot will do is say the words, and make you repeat the words to make sure you understand what it is he’s saying. Lord help you if you don’t repeat those words exactly).

We asked if he meant play play and he started screaming Nooooo…calling each family members name in the car followed by his new sounding words.

Nobody could understand him. He couldn’t show us what he meant nor could anyone guess. His frustration level went through the roof, my wife (who’s nerves were shot to begin with) broke down in tears. Tot broke down in tears, my frustration level went through the roof…not a good thing when your in NYC traffic.

My heart broke. How long can we keep going like this? His rage and frustration is rapidly reaching dangerous levels. My wife cannot maintain these levels of emotional trauma before something breaks in her. My patience and tolerance are definitely at their max levels of endurance.

Lord we need a break soon. Tots acceptance into the autism support services is a God send. I just hope we see some improvement soon. Because I know for sure that Tot can’t take much more either. We’re not the only ones this is tough on. Tot doesn’t like being miserable. His brothers don’t like him or us being miserable either. Autism does not just effect the person who has it. It effects everyone in the family.

Fuck you, Autism...

I was trolling the blogoshpere, and came across this post…I loved it. It moved me. It was amazing in it’s eloquence and POWER. I felt the pain the emotion, the frustration and the determination to keep on.

I relate to this article so much. BRAVO

PLEASE share this amazing post with everyone!

Sorry for the Silence

We’re all just trying to deal with the trip, the funeral, the government’s idiocy which effects us so harshly…

Thank you all for following my blog, I ask you all to bear with me…I’ll be blogging again soon when things calm down.

Sad Days for the Aspie Family

They say when it rains it pours, well we’re in a torrential downpour right now.

I’m a government employee and my wife is a retired government employee. So that as you all know, means until the children on the hill learn to play nice together, we’re not getting paid.

Last weekend, I got word that my brother was admitted to the hospital with congenital heart failure, that basically he was  working on half a heart. An emergency trip seemed imminent. However, since we’re not getting paid I had to tell my family that unless he passes, I can’t make it up there. It sucked tremendously but I had no choice, we’re not a family with resources or savings to fall back on.

Thankfully, he pulled through and I thought now at least I’ll have a chance to go see him soon.

On the heels of this, my wife’s father just passed away. Which meant immediate trip to NY anyway.

Now the day we got the news. I had only around 4 hours sleep. We got up got everything ready grabbed the kids and set off on the road at approximately7:35 pm. At 2:30 am we pulled into a hotel in VA.

Aspie Baby wakes up, Tantrum Tot wakes up…Monkey Boy and Aspie Teen all wake up. Finally everyone gets back to sleep except for…you guessed it…Tantrum Tot. And he’s in rare form. He didn’t pass out till 5:30 am. I passed out very shortly after.

Today we got up at 9:00 am and didn’t get to her  brothers house till 6:35 pm. Tantrum Tot didn’t pass out till1:10 am.

The good thing in all this is that the franticness of it all hasn’t really given my wife time to break down. Keeping busy has held it at bay for now so she could do what she needed to do.

This morning we got up early to get ready for the viewing. 4 adults and 5 kids and one bathroom!!! 

And I still got us there with time to take the kids to get some real NYC pizza. What happened in the pizzeria is subject matter for another post.

We had Tantrum Tot screened for services this week. Due to the diagnosis he received a few months ago, we went ahead and called a program where we live which says they can help provide services for him based on that the diagnosis we received. 

Because to be honest, the Tot has been RAPIDLY spiraling out of control at home. Well we go in there, with the Tot and Aspie Baby in tow… we get in to see the counselor and the eval goes into full swing. Well guess what? Several things…first

a). She agreed with us that the Oppossitional Defiance Disorder diagnosis they gave us was a bunch of crap.  We just really read through the DSM V criteria for ODD…and HOW they thought this applied to Tantrum Tot is still beyond me. 

Anyway, long story short after observing the Tot in action, and listening to us share about him, the lady (who happened to be the program director as well) told us that according to the file he’s failed the preliminary screening test (MCHAT) four times already so she doesn’t know why he hasn’t been diagnosed already.

She said she had to score the tests etc. and she would be in touch. The next evening she called and said that Tot had been unofficially approved to receive services!!! It’s not finalized yet but he meets the criteria for autism support services!!!

So two emotions rush in right away. 1. RELIEF!!! Finally Tot is going to get some much needed support. With this program he will be able to start” school” at three in special Autism classes.

2. HOPE!!! Aspie Teen is 14 and the lack of diagnosis and intervention is becoming me and more obvious everyday…so Tot will receive help he needs early on…

I don’t care what anyone else tells you…you are the parent and you see in your time with your child what they will never see in their few hours of controlled interaction. Don’t let them discourage you…don’t take no for an answer. Keep trying.

Some wonderful people on this blog reminded me of that when Tot was first diagnosed. And now I want to say it to anyone else who needs to hear it. Keep at it!!! Fight for your children against a child uncaring system and providers who look at the patient as a means to a paycheck…no-one knows your child better than you.

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