Just when you think......

Just when you think your kid has come so far then Autism rears its ugly head in FULL FORCE. I HATE autism sometimes and I know Noah does too. I cry as I write this and not for getting my ass kicked by him or the 10 bite mark I have on my arms and back, but because HE DOESN'T UNDERSTAND IT EITHER.  He gets SO upset after he hurts me it send im into another meltdown and he bites me again and it starts all over  I know it's autism, not that I understand it all.  But too look in those blue eyes and into his soul he doesn't want to be this way either and I can't explain it to him. At this point it's just damage control.  I know that I have been given this blessed little boy for a reason, God has a plan, right now it's just hard for me to see as I fight back tears and sit here and look at him. He is such a cool kid, loving, happy beautiful amazing and the list goes on   I am SO thankful for him   But right now I can't lie I am not thankful for autism. I hate it. It sucks. There I said it do I feel better NO because there's not a damn thing I can do about it other than what we are doing.  I just have to roll with the flow and get over it.  And pray that it's just a while before the next one!!

STX-209 is GOOD Stuff

I am going to recap for those that don't know; my son is 9 and has autism. Back in August of 2011, Noah started hitting, kicking, biting, spitting he couldn't walk in the room without hitting his sister. It seemed as if I got bit, hit kicked and least 10 times a day. It was horrible so we went to the doctor and he is a great doctor, but due to reasons of insurance he was going to be our doctor. Like most pediatricians he doesn’t know a lot about autism. Anyway to the point we got in a clinical trial at Vanderbilt in Late October, early November.

It was a blind study meaning we didn't know if he was on the placebo or the drug that he was going to get. He was definitely on the medicine, I am his mother and I know my kid. So at first of the study we went every two weeks, blood draws urine samples the whole nine yards. We started out at 5 mg a day and gradually in increments of 5mg a week we moved up to our maximum dose 30mg. I started seeing improvements when he got around 15-20 mg doses.

The improvements that we were seeing were great the study was to see if it increased social skills. To increase social skills you have to be able to communicate RIGHT??? His communication improved so much, he was a late talker, he did a lot of the echolalia thing, he still does that but he uses it in the right context. Along with be able to communicate better his social skills improved. His cognitive skills are improving daily; he is connecting with the world around him. He reads billboards as we drive down the street. His behaviors have improved and we are not currently getting ABA services due to financial reasons I can't afford it.

We had to bring him down off the medicine just like we took him up in increments of 5 mg. I dreaded it, when we got him to 0 mg some behaviors began to reappear we had to wait about 10 days off the medicine before we went back to Vanderbilt. The nurses noticed his old behaviors coming back, he lay in the floor when we got there, locked himself in the bathroom & pulled emergency cord!! Had a mini meltdown when Dr S came in he was upside down in the exam chair screaming GREAT. Each time we went I had to complete surveys of different areas communication, sensory issues, parent stress, behavior surveys, ADHD symptoms and I noticed that the final survey looked a lot like the first one.

He doesn't try to escape anymore, he gets dizzy, he gets hot or cold now and will tell me. He was trying new foods, he is more attentive when we are working, we home school him due to issues with Memphis City Schools. He is making great strides in all areas. Is it a cure for autism NO but does it help YES. Just last night he approached his sister and said

her,“let’s talk". How cool she was so excited she came and told me I said go talk to him! So she asked him what he wanted to do, and he replied, "I want to skate with you" (they sock skate in the living room on the hardwood floor). So they skated she was teaching him "dance moves" a routine and he was doing it the best he could. It was awesome.

We have had a totally AWESOME month. I had a FSP meeting (IEP for home school) went well; the dentist appt was INCREDIBLE this was the first time that we were able to get his teeth cleaned!! They took x-rays it was so cool and it was a new dentist. All is well NO cavities!! I made a new friend this week at a parent support group her son is Noah's age and they seem closely matched!! A friend for Noah awesome!! I took him to the zoo he was perfect, he listened to me, he stayed with me, it was field trip day UGH he could not have been better, maybe I should clarify my definition of "perfect" a little more At the sea lions there is an inside where you can sit or stand BUT NOT LAY DOWN well Noah did he liked the way the floor felt cool and smooth. He had to walk up and down the stairs in the amphitheatre about 5 times. Those things don’t bother me any more though. That is life on the spectrum.

Dr S said we would continue to see improvements with him. This is the FIRST medicine to be approved to help the symptoms of autism, it has minimal side effects. He also told us that Noah had seen the world around him in "his own way" that too will continue to change and he will continue to become aware of his environment.

You can subscribe to my blog I continue to post information you can email me at autism-mom@hotmail.com. The drug is to be released in 2013 in my opinion it will benefit many individuals with autism. It has truly made a difference in our lives and it gives me goose bumps as I see growth in him every single day and it his positive and sometimes negative interaction with the world.

Thanks Seaside Therapeutics, Vanderbilt Children's Hospital, Autism Speaks (funding the study) and God because of His grace and mercy that we were able to participate!!!

I LOVE STX-209!!!!!

Here are some links to a few article you might find helpful:

Treatment of Fragile X Syndrome with STX209 (arbaclofen): Open-Label Extension Experiment

The Next Step Toward Treatment for the Core Symptoms of Autism

New Autism Drug being Tested by UIC Researchers

Seaside Therapeutics Announces Issuance Key Patent Lead for Autism Candidate STX209

http://treatments4autism.blogspot.com/2011/06/stx209-arbaclofen-autism-study.html

Sex Talk How Did I Get in Your Tummy??? AHHH

Last night we are going to bed and yes Noah sleeps with me, some how or another we got on the subject of babies.  Now keep in mind we are learning about God and the devil right now too, so...

I said, "God gave you to mommy and daddy." Noah, "How did He do that if he's in heaven?'  HMMM

I said, " God put you in mommy's tummy until you were ready to be born" (GREAT ANSWER right...)  Noah asks, "how did I get in your tummy, did you swallow me??"

 I lost it and starting laughing...I didn't know WHAT to say at this point.  So being the awesome mom that I am LOL I said, "Go to sleep and we will talk about it tomorrow!"

HELP where do I go from here because you know he is GOING to ask again!!!

Fun, Faith Filled Activity

Here is the faith & fun filled activity to start out the summer courtesy of Focus on the Family's Thriving Magazine.  This one is for Noah he loves bugs (gross).  Study bugs with a magnifying glass. Talk about all the wonderful ways that God has designed each one-giving it large eye for spotting hungry birds or interesting wings to fly with.  Talk about how God provides for us too.  Matthew 6:28-30 Easy-to-Read Version (ERV) tells us, 28 “And why do you worry about clothes? Look at the wildflowers in the field. See how they grow. They don’t work or make clothes for themselves. 29 But I tell you that even Solomon, the great and rich king, was not dressed as beautifully as one of these flowers. 30 If God makes what grows in the field so beautiful, what do you think he will do for you? It’s just grass—one day it’s alive, and the next day someone throws it into a fire. But God cares enough to make it beautiful. Surely he will do much more for you. Your faith is so small!"

Follow up on the Mean Kid comments

I don't know where his parents were it was a really big party I think they were inside with the other adults I do not feel comfortable leaving Noah because of things like this. Noah's social skills are not that of a "typical" nine year old and he doesn't know how to handle the situations that arise. When the kid called him a baby Noah says " I'm not a baby". We talked about the boy a little bit last night and I tried to explain that wasn't a "nice" boy and if someone treats you like that you need a grown up if mommy or daddy is there get one of us. Because hitting, kicking and name calling is not how you treat other people. Everyone should be treated the way that you want to be treated EVERYONE!!!

You know THE KID the mean one!!!

Alright we went to the graduation party last night and it was great, they had a huge slide which Noah stayed on pretty much for an hour and a half. There we two other boys age 7 and they were all playing so great together the boys asked Noah his name, and Noah asked their names.  It was like "regular" kids I was eating it up.  They were sliding down together, upside down, flipping down the slide or in Noah's case flipping UP the slide!!!! AND THEN " the kid" gets there and we all know this kind of kid, he was just mean in my opinion. He wanted them to  play "king of the hill". But in playing the game the kid was kicking Noah, grabbing his arm & twisting it, called him a baby, so Momma was getting pissed!!  So was daddy.  It was not pretty daddy said something to the kid about three times about "playing to rough".   He was still grabbing him at the top where daddy couldn't see,  so off came the shoes and momma went up there to set things straight. I get up there and he is twisting his arm while laying on him.  Noah is not sure why to make of all this, him and sis play rough abut not with the intention to hurt one another.   I told the the kid "DO NOT PUT YOUR HANDS ON HIM AGAIN!!!  DO YOU UNDERSTAND ME???". The kid says we were playing king of the hill.  I told him, " your not playing that game anymore just slide".  So the kid settled down he actually got off the slide for a little while.  We don't experience stuff like that often since we homeschool. So Noah doesn't know what to make of it.  And apparently mommy doesn't either did I do the right thing??  Should I have let it continue and let Noah as something ( which I don't think he would) I think that Noah though it was ok.   Let me know your thoughts on this one.  Advice appreciated!!!