Age Appropriate Toys

It's really amazing but Noah has come SO far the past few months, he is playing with toys that are appropriate for his age, he is into Lego Ninjagos, expensive (their Lego) & tiny.  But worth every penny to see him playing with them like your suppose to.  I am so hopeful of his development it has been coming quickly, more so than in the past.  He & Savannah are playing together more and not quite as rough as they used to.  They have watched a couple movies together this week.  Noah has been much more explosive and prone to meltdowns at the drop of a hat.  We knew this would happen we are in our final weeks of the clinical trail and he is being weened off the medication. IT SUCKS!!  There is hope...we go back on 3-26 and get back on the medicine YEAH!!

His Cognitive Development

I am truly amazed at Noah's progression of his cognitive development, we are withdrawing from the medicine form the clinical trial right now.  We were outside playing the other day and two of our dogs CP & Astro were playing, they are really rambunctious dogs, Noah looked at me and said CP & Astro are brothers right??  and they are Comet our other dog is their "mom".  Then a couple of days later he heard the name Paul on TV and he said your brothers name is Paul.  Now we do not see my sister or brother often at all, they live in North Carolina, Noah has not seen them in several years.

Things have just started to "click" in that fascinating brain of his, its time like this when I have SO much hope, we just have to keep on working everyday to continue this awesome progress!!!

Check Out Our 52 Seconds of Video...

OK this is a hoot I took the kids to the zoo and NOAH (I say that b/c I am yelling, can't yell at him so I will yell writing about him) drove me CRAZY!!  I want to go back to Vanderbilt, WE NEED THAT MEDICINE AHHHHHHH!!  Anyway they had one of those photo booths you know $5 and get the strip of pictures COOL RIGHT!  wrong!! Noah went in an refused to come out until he had a picture made PERIOD end of discussion.  I did all the "mom" things, I tried being really sweet which usually works, not today; then I tried bribery, with candy NO LUCK; so I tried to be stern.  Needless to say we are the proud owner of new photo booth pictures of me & the kids. I feel like I got a bargain, we got 2 picture strips and you can view the video "behind the scenes" of our pictures it's really cool.  Here's the link, Savannah tried to tell me it was a video too, but I wasn't listening!! Imagine that!  Wonder how many times I tell Noah to "look here" in 52 seconds??LOL
Video of Savannah, Noah & Mom a Zoo

Picture strip of us at zoo!!!

Hasn't been a week yet...

It's already a nightmare!!!  We are at the point in the clinical trial where we are "coming off" the medicine.  Hubby is still not convinced that he wasn't on the placebo.  After the 30 minute meltdown at dinner because of seating issues.  We were playing musical chairs at dinner.  He is having sleep issues again, he got up at 5:30 am this morning AHHH.  That's suppose to be my "quiet time" well not today.  He has been difficult all morning, I wonder how he feels, he can't really tell me how he feels.  I am just counting the days until March 22, 2012 that's when we go back to Vanderbilt and we can "for sure" get on the medicine.  It helped him SO much in alot of different areas communication, behavior, interactions with others, eating new foods, reading I know that when we get on the medicine he is going to continue to excel.

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!!

So far so good....

Well we, Noah & Mom, went to the store for only a few things, we have had a MAJOR role change in our home the past couple of months; dad used to be a stay at home dad until mom's fibromyalgia left her unable to work a couple of years ago.  Dad had a job then lost it when the economy took the downward, dad did all the shopping and cooking, now dad has a job for about a month now and mom is having to do some of this stuff and she is not used to it (Especially cooking) 

We have speech in a little while and then its off to the Memphis Zoo for a little while (hope it doesn't start to rain).  With dad working we only have one car, so we try to just keep the car one day a week for fuel conservation purposes!!!  It should be a full day for us.

Update on the Vanderbilt visit, we are still on the "placebo/medicine" until our next visit in Feb. then it's the coming off period.  YEAH we are on it for another month (too many GREAT changes not be on the medicine)  It is really difficult to try to make any plans for the next couple of months because we don't know how Noah is going to be, will the old behaviors come back (aggression, spitting, hitting, biting etc.)  There is a Autism Works Conference in St Louis in March I want to attend but will be unable too, since we committed to the clinical trial, we are not going to try to do anything else right now.

Noah was PERFECT at his visit they had to do a blood draw he didn't even flinch but he did tell them, "Hey your stealing my blood"  We all died laughing!!!  We ate breakfast at the hotel restaurant again and he was great.  He ate EVERYTHING (like the Alaskan Bullworm in Spongebob)  4 sausage patties, bowl of cereal, 6 pieces of bacon, biscuit with jelly I had to quit feeding him, I thought he might explode!!  All is well for now, how quickly things change though....

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. 

Article from Autism Speaks about NEW MEDICINE

 

The next step toward treatment for the core symptoms of autism

June 23, 2011 Autism Speaks

by Chief Science Officer of Autism Speaks, Geraldine Dawson, Ph.D.
I often get the question: How is the research we are funding on single gene disorders, such as Fragile X, relevant to the larger population of individuals with ASD? My answer is that, although autism has many different causes – including single gene mutations, multiple genetic factors, and even environmental factors – it is likely that these causes affect common underlying biological pathways. By studying the “simpler” single gene disorders, especially by studying animal models of these disorders, we can discover these pathways and develop medications that hopefully can help restore the functioning of these pathways.

As you will see in the press release, this strategy is being implemented by Seaside Therapeutics. With the help of funding from Autism Speaks and NIH, Mark Bear and other scientists developed an animal model for Fragile X and discovered that glutamate, an excitatory neurotransmitter, is affected by the Fragile X mutation. An overabundance of glutamate is interfering with the ability of neurons to communicate with each other (synaptic functioning). SeasideTherapeutics then tested a medicine, STX209 (arbaclofen), which helps to restore normal synaptic functioning, in a clinical trial with people with Fragile X. They found encouraging results! The next step, which was launched yesterday, is to test the efficacy of STX209 in individuals with ASD. The hope is that this medicine will improve social behavior and reduce irritability (e.g. aggression, tantrums) in people with ASD.

In the press release Randall L. Carpenter, M.D., President and Chief Executive Officer of Seaside Therapeutics says, “In our open-label Phase 2a study of STX209, we observed significant improvements in social impairment—a core symptom of autism spectrum disorders—including symptoms such as preference to be alone, being withdrawn or isolated, and lack of social reactivity. We are spearheading late-stage development of a drug candidate that has the potential to change the treatment paradigm for autism spectrum disorders—addressing core symptoms—and are truly excited about the prospect of helping patients and their families achieve an improved quality of life.”
Arbaclofen acts by stimulating the release of GABA in the brain. To make an simplified analogy, if we think of glutamate as the accelerator pedal in brain, then GABA is the brake pedal. By reducing glutamate through stimulating GABA receptors, the first clinical trial with people who have Fragile X syndrome demonstrated positive effects on behavior.

In Phase 2b of the trial, 25 sites will conduct a randomized, placebo-controlled trial of arbaclofen, enrolling 150 people with ASD for a total duration of treatment of 12 weeks. For more information about the clinical trial visit http://www.clinicaltrials.gov/ .

We will be sure to keep you informed as this study and other translational research progresses!
Here is the link to the blog:
Autism Speaks Blog

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!!

Crazy Week

What a crazy week its been and it's only Wednesday AHHH!!  We have really great days lately, except for a little door slamming and screaming.  We are much improved with other behaviors though, like biting and hitting.  Yesterday we (I say we and not he because we are in this together) had the mother of all meltdowns, and I do not know why…  I got punched in the face two times, he then he grabbed the hair on the back of my head and started shaking my head, sounds funny now but at the time it WAS NOT FUNNY.  Then he “suckered” me he approached me with his arms open as if to hug me, so stupid me I thought the meltdown was over, HA he punched me in the face. 

We are in the study at Vanderbilt in Nashville for a new medicine to help kids with ASD and their social skills, it's a placebo study thing, he may or MAY NOT be on the medicine.  I think we may be on the medicine because we have some really great things happen lately I will fill you in with some later posts. 

We are a home school family both Noah 9 with autism & Savannah 11 who is neuro-typical are home schooled, this is good & bad we are ALWAYS together, you can see how this would get old.  I will not let Noah EVER attend public school again & am not financially able to send him to a private school so here we are.  I got to go to Target tonight by myself, it was a little strange I have to say.  What a treat to go somewhere with the kids WOW!! 

 It's the little things that mean so much to Autism Families, I really think that we were chosen because we can step back & learn a great deal from this wonderfully made child.  We have SO much love to give no matter what, if we are being hit, bit, kicked,spit on, we take it because we know that there is a reason why & this child is not mean or vindictive he is simply trying to communicate!