The Fun has Already Started & Proud Moment

Well we went to Vanderbilt and it's time to come off the medicine OMG he is already starting some of the old behaviors already. After he got up this morning it was about 5 minutes later I hear him crying I get back upstairs to see what's wrong and he screams, hits me and says my DS turned off. Then he started crying again because I didn't understand what he was trying to tell me he got REALLY upset and started screaming at me. I guess this is the way it is going to be the next month this SUCKS! But knowing that after this month we can get on the medicine will hopefully help me get through it.

He has been a WILD CHILD today, surely this isn't what  to expect for the next month.  A have been like a crazy person today too, may be that's what wrong he is sensing that I am out of sync today.   Other times he is the sweetest thing, come to me and tells me how much he loves me!!!

He has started to "lie" I can't believe it,(what a proud moment) he doesn't want me to throw anything away, so he got some paper plates out of the trash.  I started to close it and noticed the plates were missing, i asked Noah if he has them, "No No I don't have them I didn't get them out of the trash."  I told him what he was doing was lying and he looked puzzled, so I said you have to tell Mommy what you did that's called the truth.  So he went and go them for me to throw away.  I hope we don't end up on that TV show Hoarders LOL!!!!!

Headed to Vanderbilt...

Dad is on his way home from work shortly and we are off to Vanderbilt!!  Tomorrow is the appointment we start to come off the medicine AHHHH!!!!  Of course we don't know if we are on the medicine, haha we know like I have said before too many POSITIVE changes not to be!!!  This month will be coming off, when we return next month, I think we find out if we were on the medicine and we get to continue on or be put on the medicine.  So the next four weeks will be definitely be the WILD WORLD OF AUTISM!!!  I need lots of prayers and happy thoughts!!!  And we are off  hope the rain stay away for our journey!!

He said what??

At the dinner table last night, Savannah & Noah were "talking"  about different colors, so Savannah asked Noah what's your favorite color??  Noah said. "Purple" (which we already knew) She then asked, "What's your second favorite color?"  (I wasn't sure he understood what that meant)  He thought for a second and then said, "Green."   WOW!

I had to prompt him but he asked, "What's your favorite color?"  Savannah said. "Blue."  So I thought great job, then Noah blurted out, "What's your second favorite color?" AWESOME, no prompting an appropriate response no help!!  I was SO PROUD of him & Savannah!!

I just feel that all success we have been experiencing lately is because of the "medicine" that we are on in the clinical trial.  We go back this week and we come off the medicine gradually over the next month.  I don't really know what to expect.   I pray the behaviors we were experiencing BEFORE do not come back full force!!  Praying daily about this!!

Heading to Vanderbilt

We here we go again  back to Nashville for our trip to Vanderbilt.  YEAH!  Noah is still suffering from insomnia that is one of the side effects to the medicine, once again we don't know whether he is on the placebo or the drug, I would bet that he is definitely on the medicine, read some of my previous posts about his progress.  I think this is the visit where we start the withdrawal process, that is going to SUCK!!  He had a meltdown tonight and  beat the crap out of me and bit me twice, he hasn't done that in a while.  I have to be really careful now because he is starting to pick up on others feelings, and I started to cry tonight after the incident, I immediately saw his lip poke out he was getting ready to cry; I changed my expression quickly!!  Keep us in your thoughts was we hit the road tomorrow afternoon!!

SLEEP something from a past lifetime.....

As you know we are in the clinical trial at Vanderbilt for the new ASD medicine, the ONLY drawback we have seen from the "medicine" is NO SLEEP REQUIRED!!!  Noah never liked to go to sleep like most kids on the Spectrum sleep is  always more difficult with children with Autism.  The thing is EVERYBODY suffers from Noah not sleeping.  I am SO glad that I homeschool them other wise Noah's sister would be sleeping during school.

The "medicine" (I say  that because its a placebo controlled study we might not be on the "medicine")  Once again I feel certain that we are because their have been SO many positive changes in his behavior, his communication, he is trying new foods!!  YES TRYING NEW FOODS!!  We go back next week, Thursday is the appointment.  After this appointment I think we start to withdraw the medicine AHHHH!!!  I am not looking forward to that I am afraid old behaviors will re-surface.  I will keep you posted. 

Update On Clinical Trial

Noah is in a clinical trial for new medicine for ASD to improve social skills At Vanderbilt in Nashville. We are 2 months into the study and its a "blind study" we don't know if he is on the medicine or not. I firmly believe he is on the medicine because I have seen a remarkable changes in his behavior, his communication, he is noticing his environment, he is reading billboards that we pass its been amazing.

The thing is with the study is we are going to have to withdraw in the next month or so. We will be able to put him back on it after the withdrawal period. Since we participated in the study we have that option when its over. I am so afraid that when we withdraw him the behaviors will come back, the aggression and so on. But I know that it won't last but about a month, we will decrease the medicine over a 4 week period. The medicine is used now for individuals with Fragile X.

We are experiencing some MAJOR sleep issues right now, that's one of the side effects insomnia so I don't know what we are going to do about that.  This past week as been really tough at night one night he didn't sleep at all!!  He hasn't been to bed before 2:30 this week.  He is in a great mood, he just can't shut his body down to go to sleep, melatonin is not working right now.

I think it will really make a difference for some kids on the spectrum. I am so truly blessed that we were able to participate!!