Walk now for Autism2013

I I'm so happy to walk in this years autism walk.  I have raised over 280 so far of my $500 goal. I am so excited to raise enough money to provide a family with an iPad which will give their child amazing technology and the ability to communicate with them ! This has been a huge tool for our family, I don't know what we would do without his iPad we are very fortunate.

So please join us on October 27th at approximately 9 a.m. To do the family 1 mile funwalk.  If you are unable to join but would like to donate to our cause you can do so by simply following the link and searching for our team name: team jojo rocks.
Www.walkforautismnow.org
Thank you for all your support we love you all!!
If you have trouble visit autismspeaks.org

He is three, Yup and he is STILL Autistic??

   September 5, 2012...a day I will never forget.  Most times we hold on to precious memories and revisit them to bring us joy.  Other memories are there in your massive hard drive you were blessed with and they are not  going anywhere, even if you try!  Thats the case with 9-5-12, the day we heard the official autism diagnosis.  I planned on that evening a dive deep-give it my all kinda strategy to get him all fixed up by his magical 3rd birthday!  Yes ma'am I had it laid out:
read every book possible
web research every waking moment
implement all types of therapy to find THE one
Gluten Free baby
supplements
organic as much as I can
Buy every sensory toy, product, or tool and use them
never, ever let him get into a zone

Okay that was just the first month.....Then came exhaustion and depression and full on seclusion with crying and ice cream.  Went that route for a few days (lol) thats a long time for me.  Then back to therapy and testing.  If you have read my previous blogs you know HOW much testing my lil spinning wonder endured.  The end result after a year of burning myself to the core, aging myself at least 5 years, and sleeping an average of 3 hrs a night:  I absolutely DID NOT cure him, He is still autistic, has sensory processing disorder, and a broken chromosome 6...BUT what I did accomplish is amazingly beautiful:

  I have a three year old and his name is Jojo.  He is perfect.  His smile can light up anyone.  He loves to run and play with cars.  He loves to read books, and spend time in his reading nook.  He loves art and will paint and color with such intent.  He loves to watch the trash truck every weds morning.  He loves to go on drives.  His love for music is evident as soon as you see him bounce to the latest song his sister plays.  He loves his siblings and tries to protect them.  He is a brave little boy in a world he doesn't quite understand yet.  He has the ability to make your heart smile without saying a word.  He loves to love.  He wants to learn.  He is the one of the most precious gifts I have ever received.  I am a better person because of what he has taught me.   

So while I may not have miraculously cured him, I have learned how to learn with him and for him.  I will continue to strive to get the best therapy for him and keep up all my efforts, just with a little less stress.   He has made great progress and I am so thrilled to see it each day.

Jojo is now focusing more and able to complete tasks.  He can follow simple instruction (please give me that-time to clean up-throw this away).  He can use a spoon about 50% of the time.  His fine motor is still significantly delayed however it is improving.  He is now hugging and kissing us, giving high-fives, and showing emotion,  this one is so huge because that means we popped that bubble he was in.  He is able to complete a shopping trip to a familiar store.  He is saying a few words(go, yea, no, jojo, mama, dada) he has blurted out words when prompted but still actively trying and now babbles up a storm!!  He can hold a pencil, crayon, or marker and go at it(a year ago he wouldnt even try) in fact he is so particular about it; he likes to make a small circle in each corner of the paper before he starts.  His sleep is getting better too, we have good nights and wakeful ones and we just make do.  He even has taken to potty training pretty well, we have been introducing it and he likes it and definitely can do it.  We are working on a way for him to communicate it to us, until then its to the potty we go..alot!

We are so proud of him.  He tries everyday and with his schedule and therapist coming and going its a tough round, but this kid is a fighter and at the end of the day...we got this by Knock-Out!!

#Team Jojo.

Almost the year mark

The big 3 is approaching faster than I'd like.  Jojo was diagnosed on 09/05/12 right before his 2nd birthday.  I had such huge expectations of what I would've accomplished in the world of Autism, in the first year.  I didn't  know what I was in for at all. I was naively ignorant to what was coming and I took on a superwoman attitude. I crashed the library, bookstore, and any webinar or website I could find and I read/listened to so much information that first 6 months.  On top of self educating I was in the thick of finding speech, occupational, and behavior therapists to come in home to help us learn how to work with Jojo.  I had a great plan in my mind;  3 to 6 months of intense therapy and we could nip this in the ass!  Throw in a gluten and casein free diet and we were sure to crack the code.

Fast forward to April (7 months in) and I was absolutely defeated by my own plan. I was no where near where we wanted to be.  I was exhausted. Jojo was so sick all the time. My plan failed and I felt like autism smacked US in the face and with a cold hearted smirk it  chuckled at my every effort.   After seeing a few specialist it was determined that jojos autism and global delays are caused by  chromosomal abnormalities specifically chromosome 6.  This was my hardest and most defining month.  I came to the realization that this awful existence I was living in was now staying. The hectic schedule. The daily battle within myself to just keep going was taking a toll.  I finally just said to myself...you get what you get and you got what you got DEAL with it!!!

I knew that in order for me to do my best for my family I had to make sure jojo was ok.  I needed reassurance after the passing out episode he had. I had to know why it happened and then maybe I could refocus?  So began a summer of appointments and medical tests. This lil cutie was a true champion through it all.  The team at Phoenix children's hospital was amazing with him. An amazingly positive atmosphere and he had every recommend test and other than a few things to keep an eye on after age 5 he is medically FINE!!  A huge relief and refocusing began. 

Autism may be here to stay but we can just live around it. Its part of us now..its who we are..we are the autism family on the block. We are Team JoJo forever!!

I cant wait to post after his birthday and reminisce over all the triumphs we have had.  He has made some incredible progress and just amazes me everyday.

So the big 3 can come and pass with balloons and gifts to make my lil wonder smile and get so excited im sure a lil hand flapping will ensue.

The island is spinning, again.

Tonight im up late thinking about all the progress my cutie pie jojo has made. In the craziness of it all I sometimes forget what he has done.  The words blurted out without prompting,  puzzles completed,  eating with a utensil 50 percent of the time, and the amazing feeling of his eyes meeting with mine. Now thats the best!  A year ago he wouldnt look at you if you begged! 

The hard part is that while he did does accomplish daily goals he often (mostly) does the said task just once. I might hear a word on a tuesday and never hear it again for months...he is spinning and stimming alot lately. He is definitely bothered by something. Figuring it out is the worst. I start with reflux treatment and if that doesnt help I move on to his tummy. And then assume it must be pain. I do a warm bath and massage. Its a 50/50 shot In the dark.

My heart is heavy with so much uncertainty. Its been a hard few days. I have this awful anxiety about the chromosome 6 disorder. Its not the type of  disorder that comes with a prognosis. It comes with a bunch of  "we dont know"  wait and see and check all systems and hope and pray for the best. Tomorrow is the last of the *checks* we see a pediatric cardiologist to check his heart.  We have had so many test and appts this summer its unreal. With each test comes the reality that my boy has a long road ahead of him.  He is almost 3 and I want to hear his voice. I want to communicate with him to ease the frustration we all feel.

Here's to a great Dr that can deal with jojo and his sensory issues and get us a clean heart report. Love you jojo, I will always be your biggest fan and Goooo Team Jojo!!

*today a chromosome 6 lil girl from the group I belong to went to be with her heavenly father. May she rest in love and her family be at peace. ♥♥

We have words!

I attended a conference for an AAC program called LAMP last month. Www.aacandautism.com I was super excited from the moment I heard about it.  It uses a pumped up version of the basic aac programs. An AAC is an augmentative alternative communication program. Usually a device is in place with a program preloaded, but now with Ipads its nothing less than awesomeness! !  Jojo has been really good at maneuvering through the ipad so when I found out we could use his as an AAC with the lamp program I was ready to do whatever it took. Shortly after getting all the info and talking with our speech pathologist, we decided to make this our summer project. The first thing we had to do was totally stop ipad use because with the aac in place the ipad becomes a communication device and not a playtime activity. I thought that would be hard but he gave it up no problem at all!  During the next 2 weeks my hubby and I read and watched videos all about the LAMP approach. It was a crazy hard time because I was so scared to do it because of the thought that it might stop him from trying to talk on his own. (This probably is what most parents worry about) but our speech team was really great and kept reassuring me that jojo had the signs or readiness. His receptive language is up to par and he was pulling us around the house to ask for stuff by whining. He has also started babbling similar to a 1 yr old. So we finally had everything in place and ready to go on June 7th.

Jojo sat at his little blue table with his shiny blue ipad with myself, daddy (video recording) and our wonderful hab/aba aide Jade. We turned it on and started with two words "eat" and "go".  He picked it up so fast. He hit eat and he got to eat an m&m. He hit go and the train went go go go. A ten minute session later and I could tell he was going to get it.

The afternoon session went even better. He soon got too impatient to press buttons so he blurted out "Gooo" to make the train go!  We also heard "mamama"and another" go". I was so happy. We all just smiled and got teary eyed. Jojo was pleased with himself.

The whole family is doing parts of the therapy. Jojo is so blessed to have loving siblings that want to help teach him.

Its now been one week and jojo has amazed me. We added new words throughout the week and he has been verbalizing most words and I am beyond ecstatic for this sweet voice to keep talking. I cant even begin to explain the feeling of joy I get when he makes a connection to a word. I see the sparkle in his big brown eyes and his smile just melts me when he says a word and looks at us to make sure we heard it!  So far heres a list of the words  he has used:
Go
Stop
Mama
Eat
Apple
Milk (mill)
Play
I go
No
Jojo
Read (reeeeee)
Hi
Bye

I know this is the beginning of a wonderful time for jojo. The world is going to make a little more sense to him. Its been a rough year but together we are doing it! !

I am so proud of you Jojo!

My wonderful wonder

I think it's time for an update considering so much has been going on and changing.  I am so very proud of all the progress and hard work jojo has done. He has such an amazing team right now (it can change at anytime so I appreciate it so much) every successful session is so much more than just Jojo and a therapist, its a family effort. Its Jay and I actively being engaged in the moment and the Kids helping out and sometimes even doing the activity with Jojo. Its an all day thing. We learn from the different therapist and then as a family we ALL help carry it out into our day.

He has started stacking blocks, playing with toys appropriately about half the time, eye contact is so much better,  he is babbling more and more, has said yea, whaaaat, go, maama. We hear these words very sporadically. Im so happy he is trying. Some days he kinda zones but then he tries. Every little word he babbles and block he stacks makes me smile and cry. The tears nowadays are of gratefulness for getting to a good place. Seeing progression is beautiful

Jojo has had a lot of medical tests done.  We had complete blood work and chromosome array testing done last month. This was the hardest thing my sweet baby has been through,  he was so scared of the entire process. As soon as he figured out that we were in a procedure room he flipped out. Well the tech was obviously shaken by his screaming and after 3 ATTEMPTS my hubby tells her to stop and get the hell away. I was shocked because I am the emotional one but this was pretty much ridiculous. We left and no blood was drawn. We ended up taking him to his pediatrician's office and they did the draw in a few seconds.  I was so glad it was over with!

 During the next two weeks we waited for results and also had an EEG test done to rule out seizures.   This test was hard because of the way he had to keep his head still. With mommy and daddy literally holding him down the test was completed! !  Now, more waiting.

We carried on with the normal schedule, jojo is doing about 15 hrs a week of aba styled hab work and 2 days of speech therapy and OT is coming back on board soon. A few weeks ago we got the calls from the neurologist and lab. The EEG came back clean-no detectable seizures! Blood work was normal, thank goodness. Then he dropped the bomb. Jojo has a break in his chromosome number 6. The more techy term is a micro deletion at 6p23.1 at 459kb. Yeah its complicated but it means that you cant fix whats broke. Means I have a reason for the autism. Also means a whole new worry. Chromosome 6 disorders are extremely rare. There is not much info to go off of. I have found a few online supports and have taken in as much as I can. The final diagnosis from the pedi neurological exam and testing is now: Autism, Global Developmental Delays, Cognitive delays, Encephalopathy (nonspecific brain disease) Since im on a roll I want to note that despite all the Big Word disgnosis I am still going forward with the AAC language through motor planning technique. Its my best hope for a form of communication. He is trying to talk each day. During a puzzle building exercise he blurted out,"I did them!" Team jojo in full affect and always ready for the next adventure. Love you Jojo

Giving April the bird

The past few weeks have been mind blowing busy and guess what? I see no break in the near future. Autism is an energy sucking jerk. I'm tired. My boy is tired of it too. He seems so miserable lately. I don't know what happened that day 4-1 but it changed him. He has been sick since and has been moody. We have the first EEG tomorrow. Instruction for us is to -
Keep him awake till 10 pm
Wake him up at 5am
Keep him up till the appt at 11
LOL what a fun night and day we shall have. He wakes up twice (sometimes three times) a night. So he will be beyond cranky and tired. They are hoping he can fall asleep during testing. That is not gonna happen. I hope it does and I will be praying and doing all I can to try and make that happen.

There are a lot of viruses and tummy bugs going around right now so we last minutes decided to lay low today and the next few wks. Jojo has been on Antibiotics alot lately and I do not want him to be sick again and have to miss any of the up coming appointments. I am hoping to get them all in before the end of may so we can have a summer BREAK. Wishful thinking, I know! Well here's to a busy but wonderfully blessed week ahead!!