Island Birthday update

I started this post over a month ago...it started like this
One of my very best friends/more like family is giving birth as I type this. I am overwhelmed with feelings of pure joy for them, I remember the intense love that only new parents can feel. Not just with the first child, but with each subsequent birth. Yes the birthing story is different each time, yet in the end the beauty of what seems like a long pain fest is always the same, an amazing child of God given you to you to raise and  love with all your might.  

To me it's the most precious gift I was ever alloted. I am always so thankful for my sweet children, all four of them.

This is my yearly update on my special gift, Jojo. He is doing remarkable in most areas and still struggling in some. His awesome siblings are so helpful and even encourage him during his most rough times. This often means that he is in full melt down mode (screaming, kicking, scratching,  slamming doors, and his newest addition spitting) but even as the tension rises one of us is always willing to help him calm down. Each time its different and it always seems like the best one for the job is usually the one who steps in, because sometimes I am the last person he wants to comfort him. That's really hard for me, but I realize he gets a different kind of comfort from each of us and in return a new bond is formed.

  Jojo is SIX years old today, and the amount of progress and change in the last few months is just so awesome. He can just about repeat almost any word we say or point to. He understands and can follow simple and some 2 step directions. He has a few phrases he loves to say...mostly cause he just thinks they are funny or because they have become a stim. A few are:
I can't hear you
1,2,3,4,5, yeah!
My name is Jojo, yeah!
Bye see ya

I'm so proud of him, it's so hard to see him struggle and heart wrenching to not understand what he needs. He is very good at showing us, but we are working on encouraging his language use.

Another huge accomplishment this year was his first few movies! We live close to a theater that does sensory friendly showings and Jojo loves it! He is slowly getting used to going out more. And he even played on a special league for baseball this spring, he did it jojo style for sure!

It's so hard to understand the anxiety he gets when we go out, especially when he loves to go in the car. It's when we stop driving that he freaks out. We have been able to go to one restaurant with him (cheesecake factory) he loves the huge columns and the fries. And just recently he did a fast food place. It's crazy how much our lives have slowed down and changed. I wouldn't have it any other way, except for him to enjoy more.

  I can't imagine what this wondrous sixth year will bring, my wish is for a progress filled year with nothing but exploring and happiness.

Happy birthday my lil wonder! We love you so very much!

The big 5!!!

My sweet Jojo is turning 5 in about 12 hours. I am so proud of all he has worked so hard to accomplish this past year. From learning how to master puzzles, use a fork, and even saying words!!! 

Just recently we started using a speech system called Gemiini, it uses DVM (descrete video modeling) it basically is a series of video clips using peer modeling speech. I LOVE it, the first day we showed it to jojo was by me reading an email from my awesome neighbor who suggested I check it out, well I clicked on the link and a DVM started playing and a lil boy was saying CAT and guess what, Jojo calmly says, "cat"! I was sold, I contacted the company and we started the next day. Jojo is so blessed with people all around him looking for ways to help. 

 Jojo definitely does things on his own time line, and while he might not be doing what typical 5 yr olds do, each and every seemingly little thing he does means So much. A simple smile can melt my heart, a completed therapy session is amazing, and nowadays a stop at a store or drive thru without a meltdown is like the best thing ever! 

I remember the day he was diagnosed like it was yesterday, the words the Doctor used and how negative he was,well doc, sorry but my boy proved ya wrong. Jojo has the best team ever ready to help him do even more. 

Here's to another year full of amazing twists and turns with the occasional meltdown...bring it cause Team Jojo is ready more than ever before.

Happy 5th Birthday Jojo!! 

Love you for always!

Death of a loved one and Autism

It's been awhile since I have written and it's because I have been fighting with myself to go on with my blog.
My Mom was my biggest reader, fan, and all around supporter of all things therapy and Autism related. She was dx with adneocarcinoma stage 2 then days later progressed to noncurable stage 4. This was a very hard time for me and my family. It seems like a blur now, within 90 days we went from planning the holidays to planning her celebration of life. All the while I was both doing my best to keep up with the autism mom schedule, my regular mom stuff, life in general, and being the absolute best caretaker with my sisters and brother for my mom. The day after Christmas she was placed on hospice care and we had some amazing moments, sad ones, angry ones, and some laugh your booty off memories! I was so reluctant to bring jojo to see her (we were blessed to have her in her own home through hospice) during those last weeks,  I was so focused on keeping her comfy and happy I was afraid he would be too loud or rambunctious. But I remembered how much she always tried to include Jojo in everything, so i just did it. And one of my favorite pictures is my sweet mom eating Popsicles with the kiddos. Sure he was loud, and acted like he always does but it was perfect that day. They all got a good laugh with grammy, cherished memories!

My beautiful, always loving, caring, and perfectly ours Mother passed away beautifully with all her kids around her on 01/23/15. It was too fast, and left me feeling pretty down.
I never really thought Jojo noticed what was going on. He seemed quite oblivious to it all. I chalked up his new behaviors to me being gone a lot to care for my mom.  Well, the evening after She passed, Jojo ran back n forth between his bed and my moms picture! He knew, he felt it, it hurt him just like the rest of us. I knew from that day on that he was going through the grieving process like the rest of us. Even now 2 months later I catch him with her pictures and looking at videos with her. He has such genuine feelings and loves his people, and that would be anyone who loves him back. He loved to listen to my mom every night at 8pm, she would tell him goodnight just to hear him squeak at her or a random buh bye.
I miss her with all my being, a piece of me left that day but I believe families are forever so I can go on, each day will get better. And I will continue to blog as she would have wanted me to. Plus it's an amazing outlet for me and if I can help just one person it's worth it!
Moral of this blog: children with autism do feel, they have feelings tenfold. The old  thinking that autism will rob them of emotions is not true, in our case we pushed through the "boy in the window phase" and with hard work and follow through I believe in my heart that most can learn to understand emotions. I will update our "emotions" work on the next blog. Our awesome speech therapist made us a book that helped.

Jojo all smiles, a new found happy!

My boy is Four!!

                 Happy Birthday Jojo!!!!

    I am just amazed at all the wonderful things my lil cutie has accomplished this year.  Despite the struggles he faces each day he always gives me a double dimple faced smile! We are so blessed to feel so much love from Jojo, a year ago he didn't give hugs or kisses.

     He is such a loving happy kid. He loves to greet his daddy as soon as he hears the truck pull up. He adores his siblings and relishes in every opportunity to play with them or destroy their rooms.

Every word he gets out makes my heart smile. I am so excited to see what he has in store for us this year. Im sure we will have a blast. I love YOU Jojo to the moon and back, we are in this together, forever..ever!! 

    Happy birthday to you my mini superhero. Enjoy your day and gifts. I chose to respect your needs and keep it small, I want you happy n flappy..not having a sensory overload.  LET'S EAT CAKE!!

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Summer swirling along

I seriously cant believe it is already July!! We have done so many cool things and made so many memories the last two months.  Jojo went on his first real vacation, ate at restaurants, went to SeaWorld, and tried lots of new foods.

May was a hard core therapy and preschool readiness month.  We are really trying to get him ready for the structure of school.  He can handle simple task but needs 1:1 assistance.  His language is still prompted one word answers, like "Jojo do you want to go bye bye"? He says uhh yeaaa. Then we will say lets go, can you say go? Then he will say GO.  Or we count up 1,2..he says three.  And he can mimic one word at a time.  He has 16 words he can cleary say but he doesnt know when to say them.  So because of this he is still labeled non-verbal. 

Behavior is greatly improved when he can communicate,whether it be a PECS card, the ipad AAC, or pointing. This is huge, huge like I cant even express how much of a difference it makes!!  He is so proud when he choses something or shows us something.  He rarely has meltdowns and when he does its easily diverted (enter supermom powers) I have become able to calm him.  It may take 5 mins but id take that over a melt down anyday.  I use some basic calming techniques(deep pressure, distraction, or auditory distractions like music or singing)using his indoor swing, and lots of consistent time outs in a safe comfy spot.  To help prevent the spacy moodiness I use essential oils on him everyday.  I love my oils now and swear by em!! He responds well to Serenity, breathe, and lavender oil.  I also use onguard for viral/bacterial infection prevention. 

Therapy is chugging along with some big changes coming up. We have been doing speech, Ot, and Hab/aba for over a year.  We are going to mix it up to benefit Jojos current needs. 
Physical therapy
We are first dropping OT to make room for PT(physical therapy) jojo has missed two wks of OT due to toe and foot problems.  He is a toe walker and despite  trying all the methods to get him on his feet, its just not improving.  The pedi is suggesting AFO braces to support walking properly and to avoid surgery on his calves.  *always something*

IBT=Intensive Behavior Therapy will be starting and will address preschool readiness.  Getting him to follow task, sit for a while, and just cooperation. Its pretty much aba with a twist (: I will be fully involved and doing it all with him, along my baby the whole time.

Music/Art focus on his talents and exploring.  He loves to paint and listen to calm classical music.

Speech will be increased to address his needs. Plus our therapist is so cool she is willing to extend sessions. 

Sunshine soccer, yup my boy is joining a special needs league.  I love it!! Only down fall is it falls on sunday afternoon but thankfully after church.  He will love it and I cant wait to see him run!! Running is his first love, he runs faster and is the most agile kid I know! This is a enclosed environment and SAFE. RUN JOJO RUN!!!

Hab/habm will remain our main supporters, our Jade is like family.  She is great with jojo and all of us.  He points to her picture right at 8am. Even though he fights us through our sessions I know he can feel the love and dedication. Jojo works with Jade and I for at least 20 hours a week.

Geez im excited to get started but always a little bit anxious.  Change is HARD. Jojo adore his siblings and has loved having them home.  I am not going to home school this year, yup All my kiddos are going to public school ( I have homeschooled my two middle ones since kinder) so my heart is about to skip a beat come August 11. I know they will all do great and that the hard work we have done together, at home will shine in the classroom.

Tsunami of Progress and Emotions

My Amazing lil wonder is really just that..AMAZING!!  We have had a whirlwind of things going on in the last 6 weeks and he has handled it all with no more than the occasional meltdown (that we have learned to minimize to less and less).

We had a follow up EEG and sleep study that was supposed to last three days in the hospital but we were out in less than 48.  The results were NORMAL and we were told that he is experiencing benign infantile spams.  So all the jerky movements at night that sometimes awaken him multiple times is just a thing he will hopefully grow out of and is pretty common in autistic kiddos.  The one syncope episode is still unexplained, that will forever be in the back of my mind and even though I try to tell myself that it "just" happened its ok..I still worry about it happening again.  Jojo did so well during the testing, he handled it like a champ.  He was well taken care of by me and his daddy and the team of nurses and child life experts at the hospital.  they had his room all sensory friendly and he LOVED the view.  I was thankful we were able to leave early and that everything was ok.

Our therapy routine is so different now but a good different.  He is doing his OT sensory/fine motor at a clinic and speech is in home with a therapist.  We have our HAB/aba in home and hours are slowly increasing. We are up to five days a week summer schedule.  He is adjusting pretty well and making great strides.

Autism Awareness. ..I'm too aware

April is worldwide autism awareness month and specifically the 2nd, being the day to show support.  I plan to light it up blue with some cool led balloons, encourage all my family and friends to wear blue, and bake a cool gluten less cake for us to enjoy.  Then I will probably cry..Again! I'm 18 months into this new way of life and really it's HARD.  Of course, we adore our son and he is spoiled by his siblings with endless love and concern. His team puts in hours to teach and guide both him and us.  But it's hard! I also know that hard things teach us good things.

But for right now this is my personal account of how aware I am:

  I'm so aware of autism now that it hurts.  And when I say hurts I mean it in every way. Here's what it is like for ME, as a stay at home mommy of 4. My older kiddos are 16, 11,&10 (2 are home schooled) Jojo is 3.  He was DXd at 24mo right before he turned 2. So after 3 yrs this is my account of being fully aware of autism.

Emotionally I'm a mom that has been advocating since the day after he was diagnosed for every service and support he can get.  It doesn't come easy and takes a toll on ya.  At first, I felt so on top of the game because I was able to get myself very well versed on the "system" and the interviews came and went,  mostly in my favor.  After so many evaluations though, you start to avoid them like the plague.  Who wants to hear that progress has stalled out or that for the last 18 months your child's cognitive status is that of a 15 mo old or maybe I might hear 18 mo, if the evaluator feels bad for me.  It's hard to hear. So you take the positive and run with it....you share with the few (and it's just a few, for real) the moments that seem so huge now.  He made it through a drive thru without banging his head!! Or we went to a birthday party and lasted almost an hour! He did a great job on a therapy day! Made it through a whole week without breaking down! I really only have a few people I can talk to and be real about the triumphs and the knock down days.  Those good days leave me with a sense peace and hope for a good future for my lil guy.  The hard days leave me feeling lost.  Defeated. Depressed. And plain sad. 

Then there is the guilt. I am constantly in a state of guilt for my older kids.   They are going through this process with us.  They can see and hear and feel it all.  They have been great with telling me when it's too much.  I make time for them one on one,  but I feel like I miss them terribly.  I am planning on transitioning my 2 into Public school next year.   Only because I feel they need an outlet. That's so hard for me because I love home school. Can you just imagine this emotional roller coaster?

physically  I am just exhausted.  Sleep deprivation never goes away.  My hubby and I trade off on night duty. We both need a good week of sleep. Jojo has never slept thru the night. Not even after being sedated  for surgery,  as soon as he decides it's time to get up he just goes.  This is taking a toll. Heck I need my beauty sleep AND a great concealer because I'm looking like I could cast for walking dead.  I am fully part of his therapy, I love seeing him complete a task or try so hard. I often wear battle marks form his session's. He doesn't want to do things the way we expect, he has his own prewired planning going on.  So I get the jist of his aggression and my body is bruised and the scratches turn to scars.   Somebody asked me if I had some disease that cause the spots on my hands. .nope just a three year old with non verbal autism.  I have torn shoulder ligaments. Back spasms and old issues have came back with vengeance.   Anxiety and insomnia are my battle. They are evil because the end  result is usually increased pain. But I just can't help myself,  I am so used to fixing everything for everyone so at night when the house is quiet I research what may be the cause of a new behavior or stim. When I do fall asleep it's cut short by my lil guy waking up to just see what's up, so I'm always running on empty.

Autism..really?

This the WORST part of having a child with an invisible disability.   He looks completely normal, well actually he is an  absolutely handsome lil guy! He stims a lot.  He is loud.   He moves differently. He walks on his toes. He flaps his hands so fast when he is happy or excited. He squawks like a pissed off bird at least 80 times a day. I see the looks and feel the sting of comments. I can ignore most but some cut me to the core.  I want to tell Em...He isn't a brat he is flipping out because the lights just flickered and I turned my cart left and not right! ! He has Autism and sensory processing disorder and chromosome 6 deletion all of which causes global developmental delays, and he can't speak so he screams. My baby is 3 and a half and he can't speak,  sure he will mimic a prompted sound here and there and he will sign EAT and MORE. All of which this mama is extremely thankful for but, it doesn't pacify the need/want to hear those precious words: I love you mama. 

I long to hear you voice, I dream of just walking hand in hand with you around the block talking about the beauty around us. I imagine the feel of you gently giving me a hug. I am aware that Autism is here to stay,  yup it stays. No gluten free hyperbaric oxygen therapy with a side of the latest supplement is taking  this away.  My son's brain is wired differently.  His neurons fire too rapidly sending all sorts of mixed signals. He is amazingly different and someday the spinning may slow and communication may start and when that day comes I will be the one flapping and screaming! !
#TeamJoJo forever,ever ♥

here he is sitting in a discovery bin.best way to play (:

Genetics and more!

   We finally had our long awaited genetic appointment on 1/28/14.  I took me this long to write about it because its just hard.  Its hard to deal with all the what if's and the unknown that having a chromosome abnormality brings.  The genetic team was pretty darn amazing with how they handled Jojo and his sensory processing.  He gets very agitated and overwhelmed in new places and especially with 4 doctors all around in an exam room. The whole appointment lasted about 2.5 hours and he managed to not have any huge meltdowns.  They examined every inch of my kid.  They noticed the littlest things, like tiny birthmarks, the position of his ear vs eyes, they way he looks when he is just chilling to how he breathes in a resting state.  After all was talked about and looked at we were told that because his deletion (chromosome 6..specifically 6p22.3) is so rare they don't have much to offer in way of advice or what to expect.  She did noticed that Jojo takes some deep breathes for no apparent reason and so that will be looked at during an upcoming 24hr observation.  He will also have an EEG while there and a sleep study to see why he is waking at the same time every night and and to see if there is a correlation between the laughing spells and his waking.  They also did further chromosome testing, specifically looking at chromo 15.  They told us some of Jojos symptoms are characteristic of Angelmans syndrome.  While im very thankful to have the opportunity to see a genetics dr and try to get answers I have to say, ignorance is bliss! I was just getting used to autism with a side of chromo 6.

 I tend to obsess over what they suggest is going on and the reality of the fact that he has so many hurdles to cross.  As he gets older the developmental gap is getting bigger.  Its not so easy to pretend that he is just a lil slower than his peers.  Its heart wrenching to see what he "should" be doing or to hear that at 3.5 yrs old he is still at a 14mo cognitive level.  I usually go through this weird down in the dumps kinda mode for about a week after an appointment.  I spend that week researching every new term I heard and trying to think of new ways to approach learning specific to Jojos needs.  Then I snap out of it and realize that he is making such great progress, in his own timing. He really has had an amazing few weeks with lots of new sounds and babbling.   We hear words but consistent use of the few words he has is just not there yet. 

 We have an exciting new opportunity that we heard about through the chromosome 6 group we belong to, It's called IRUN4, a nonprofit organization that matches up runners with a child or adult with a disability.  I was so thrilled that we got a match the same day we signed Jojo up.  He has a huge Love and desire to run.  He stared running before he even walked..no seriously!  He went from a funky crawl to just running. He wouldn't stop and it was one of the first things he did that was just a lil different than our older kiddos. He ended up getting so into it that he would run till his heart would beat so hard and fast he would get winded. We had to stop him. So now we go outside and have to restrain him from running because he will just run and not stop..But now he has a runner.  She is pretty amazing too with a great story. We adore her already and Jojo loves seeing her posts and pics. To get more info: www.Irunformichael.org

   Jojo has two super cool new signs and it's been 2 weeks so I consider them here to stay.  He signs EAT and will get so excited when he gets food be a use he ASKED for it!  He also signs I potty and is doing pretty well with the first stages of potty training.  I am just amazed by his drive to learn and his ability to overcome hurdles one by one. 

Hand in hand, all together.  We got this!
#TeamJoJo

2014 here we Go Go Go

The New year is underway and I already  feel so positive about my lil wonders progress.  He is trying to talk so much.  He has been over taken by the squawk for quite sometime so at this point any verbalizing whether a babble or partial word is just complete joy.
He finished off 2013 with a great team of Speech, Occupational,  habilitation, and an amazing aba/music/floor time therapist. We are the perfect mix and he seems very pleased with each one.

Over the holidays we anticipated a few wks off therapy so I decided to buy a cool dvd series called a Baby Babble. It's super neat. Definitely has help jojo to see and hear a word in his favorite format..TV with different sounds and toys.  It's so cool because it's very similar to a speech session implementing floor time therapy.   He is on disc 1 which is for 0 to 12 months. He can repeat about 40% off the sounds. And a few words too. His favorite is Go.  I'm glad "go" is making a come back. It's part of his list of words he used to say. I love the last part of the session because it goes through 10 signs to be consistent with and gives ideas on getting your kiddo to want to talk. I got the dvds on Amazon for around 30 bucks. Absolutely recommend them if you have a nonverbal kiddo or even a baby. It's a great way to learn the basics on helping to encourage speech.

So our goals this year include:
Continue all therapies
Intro a music led program
Potty training

Here's a great story to end this post with and a encouraging way to start the years goals.
1/13/14
JoJo's daddy is away on a business trip.  He adores daddy and waits for him each day.  Today at bedtime I said,"come on jojo time for night night"  he looked at me and gathered his blanket and went to the room. He climbed in the bed and looked up and said: da da a da da No. I was so happy he said da da so I picked him up and praised him and since he was giggling I decided to rock him for a lil  bit.  I cradled my 37lb toddler and began to rock him. Right as I started to sing he looked at me and started talking and babbling: my ya da da da Noo da da bay bay may ma"
He went oh with other word sounds. It was like he had a story to tell. So I listened. I acknowledged everything he said. He then crawled into bed.
* cherished memory*
Never give up
#team jojo

A great Month for us

I say amazing in the meaning of how I feel.  When I reflect on the month of October im completely surrounded with thoughts of love and friendship.  It was a beautiful month.   We learned so much about Jojo and the reasoning behind most of his behaviors . We started the month off by getting fully into our regimen of Speech,  Occupational therapy,  and full habilitation Services with an ABA trained tbetapist.  We average a pretty busy schedule but it is fully able to be implemented by a family starting out.
At the present time we have:
Saturday,  Sunday,  and monday  as family time and No Therapist.
(We still do his activities through out the day and keep his schedule on)
Tuesday: morning is off.  Hab/aba comes  fr 230 to 5pm.
Weds: hab/aba fr 8am to noon
Thurs: OT fr 8-930 nap time then 2-5 hab
Fri: Speech 9-10 and hab/aba 830-12
We average 15 hrs a week. I use this time as a way to absorb all the info I am hearing. This way I can continually use the techniques the same way the therapist do.

During therapy it all seems so easy. But when you're in the heat of the day and just trying to get by it seems hard to stop and do 15 or 20 minutes of some sort of activity to get your child calm. But by keeping at it and seeing it as a routine I am able to do it. For Instance,  before I start cooking dinner I will go roll on the floor with jojo and then do a deep pressure massage touch on his legs arms and shoulders. This relaxes him and he can focus on a task. Allows me enough time to get my task completed too.  if that doesn't work I call in my enforcement helpers aka the older kiddos they like to do therapy fun with jojo.  Its a win win!

October also was the Autism Speaks walk.  My whole family and jojos therapist all came. Even their families came to be supportive.   It was amazing.   The whole process and feeling was just overwhelming but also freeing for me. I was so  nervous to see so many affected all at once.  But it was beautiful.  The love and support from family, friends and volunteer community members was awesome.   What a huge accomplishment!  Jojo loved the nice long walk and enjoyed an apple along the way . This day was my  birthday and it was perfect! 

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!

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!!

Terrible twos twisted with autism

   Oh what a week it was.  My hands are most likely going to bare the battle marks from this week for years to come.  Jojo as sweet as he is, can be very aggressive when he feels any sort of anxiety or if he just doesn't want to do a task.  He automatically just goes into baby wolverine mode and scratches me like crazy.  If I'm not right there he will find me just to scratch me, gotta love it.  At this point I consider it a sort of flattering thing, hey at least he is showing his emotion and he wants to share it with me?!?!  He has stopped hitting his head with his hand but seems to like the wall.  So its usually a quick scratch followed by a head bang to the wall and then a scream.  He loves to do it all in threes, we call it the Jojo trifecta.  The week ended with his ISP meeting and goal setting.  It was a good learning experience for me and an eye opener to how he reacts in different situations.   Compile that with a full week of ABA and other therapy and it leaves you with a worn out child and mom.

  Jojo has definitely picked up on his abilities and he isn't afraid of trying anything now.  He used to shy away from the slide but now its climbing up and sliding down everything.  He also mastered the "look", when I say No Jojo, he looks at me like...ummm why not? and then he of course does what he started!  Trying to discipline a toddler is hard enough but throw in a side of autism and there is a buffet of behaviors that just don't make sense and trying to decipher whats typical of a kid his age and whats a stim or a reaction to anxiety is just mind blowing.  I decided on the good ole "remove and distract method"  I have to place him somewhere safe, like on the carpet or his bed because he goes bananas when I stop him from lets say, climbing on the counter.  So I anticipate that he will throw himself about and bang his head so its on to a soft safe place and then I walk away till he cools down.  It works for him.  XX fingers crossed  XX

  Jojo did so much in a week and I am so very glad we got through it.  I look forward to getting into the consistent and structured ABA.   We have a habilitation/ABA trained worker that comes to help now.  This is very hard for me but I'm sure I will get used to the help.  I'm so used to being able to do it all, so for me its hard to admit I need the help.  She started last week and just did some get to know you activities and he REALLY paired well with her. 

Today (02/19/13) he had his first real session with her and he did amazing!  He was able to sort colors into proper groups and his IPAD ability just is unreal.  He may not speak but this kids voice is loud and clear.  He was able to understand the task and that was so cool!  I loved seeing him accomplish his task and then the happiness when he got his reward (playing for 5 min with a favorite toy)  We did this in increments of 15 min on/5 min off  and he responded well.  He gets a break for lunch and downtime and then back at it from 230-530.  This is pretty much our new schedule for mon-fri.  Its alot and the adjustment for all of us is different.  I feel torn between therapy and my duties as a mom/homeschooling to my two middle kids.  Its so hard to feel like I'm always lacking in one area.  The kiddos are doing well and I keep them involved, sometimes they do activities with Jojo too.  We all love to see his progression and I'm so happy that my older kids are just that, older! They understand more and can grasp the idea of having a little brother who needs extra attention.  Jojo is so blessed to have siblings to teach him and walk this path along side of him.

Holidays can kiss my....and other lovely things

  Well we are into the 3rd week of the New Year and I am glad to be starting a new one!  Life for my family has changed so much.  I am trying not to dwell on what used to be and look forward with a fresh attitude.  The holiday season was a huge eye opener.  My lil wonder just does not dig parties, family gatherings, the mall, or any crowded over-stimulating place, at all!  We spent most of season here at the house making crafts and celebrating all while pulling him into the circle of things.  He did well with the tree, decorations and presents but when it came to the big day, he HATED most of it.  I was sad about it and I really thought he would rm up to it, but it was not his thing. 

   I don't know if the break from therapy was good thing or bad.  We took about two full weeks off to just have some time of our own (we have three therapist in-home about 4 days a wk) and while I enjoyed the privacy and letting my house be it was too long for Jojo.  When therapy started back up last week he flipped out the point of no return for over an hour at each visit.  It was like starting all over. the worse part of it is the new behavior Jojo started.  He now hits himself.  He used to just hit us at random, you know the occasional slap to the face or pinch to the arm.  Now, its full on smacking himself repeatedly as fast as he can.  The kid has an arm and is FAST!  I try to intercept and I end up getting smacked.  Its just the worse to see him do it.  I counted over 32 times in one hour.  His ABA lead told me its a sensory input that he is looking for.  It all kinda makes sense, you see he was a Binky baby until about three weeks ago.  He just stopped, I was actually bummed because the Binky was the only way to keep objects out of his mouth (he mouths everything!!) So his ABA lead explained that now his mouth isn't busy with the sucking so he is looking for input in other ways, even if its hitting himself  ):  I tried to distract him, restrain him and even thought "hey maybe if his hands are busy he wont do it" not a great idea...He slammed his cars right into his face. 

    We have also really been struggling to get sleep around here too!  He was having a hard time with seasonal allergies so the meds started.  First Claritin, then Zyrtec, and now Allegra.  We have been doing the Allegra for about 3 wks and it helps but he is not sleeping at all.  We are lucky to get three hours out of him at night.  Nap is about 1.5 hrs on a good day.  I'm so exhausted but I keep telling myself that this is not it, there is a way I just have to balance all this freaking crap out!

   Here is what we are currently doing/working on:

Gluten Free diet
Milk Free diet
Nut Free diet

Sensory diet (this is where you have a set schedule of sensory input/output just like a meal plan)

Speech has been increase to two-hr sessions, he has made little progress.  He is babbling at a 12 mo level(we were at 9mo so a little jump there) His official "word" is MIKEY..this is Jojo's word for MILK.  He does not ask for mikey directly but when you give him milk, he runs around chanting Mikey, Mikey.  I LOVE IT!!!  We have heard the letter sounds: G, F, M, Ah, EE, D

Developmentally we have seen GREAT improvements!!  He points, whoo hoo!!! Just in time for the speech Ipad use,and he has mastered the IPAD like nobodys business, amazes me how he can just get right on it and start his app! He has almost mastered the pincer grasp, he uses it though!  He can hold a spoon/fork and will allow hand over hand use.  He can put 3 out of 5 shapes into a shape sorter, and he has started playing appropriately with some toys (pushing a car, throwing a ball, turning pages on books) I am very proud of everything he does!

IPAD PECS System

During our last speech session our therapist seemed really positive about us trying out a pecs on the IPAD.  I had been a little reluctant because I was afraid he could become dependent on it for future communication.  But, in all honesty, our biggest struggle right now is the lack of both verbal and non-verbal communication so I am desperate to find some even ground

.The Picture Exchange Communication System (PECS) is an intervention program that helps people with developmental disabilities to communicate more effectively. The augmentative intervention is simple, and it uses inexpensive materials, in our case we will use the IPAD as a tool to deliver the picture system.  Jojo loves the ipad and is using his index finger, more and more. So I am hopeful that he will take to this pretty quickly.  Our homework this week is to take pictures of EVERYTHING around the house and out in the town too.  
The picture communication system, is alot like applied behavioral analysis (ABA), it breaks things down into small steps. Each phase of the system serves as a foundation for the next, and some kids may take longer in certain areas than in others, depending on their level of functioning. The systematic approach has six phases, and images are key in nearly every step.

Phase One

The first phase teaches children basic give-and-take exchanges inherit in language. It uses single pictures of desired activities and objects or foods. The child makes a connection between pointing at the picture and receiving the reward.

Phase Two

The second phase increases demands by putting more distance between the child and the picture. Instructors use the images in different areas, and different people may encourage the child to use use pictures to communicate wants and needs. This phase helps the child generalize the skill.

PECS for children with autism is an evidence-based approach that is effective in teaching children functional communication. Not only do kids learn the fundamentals of communication, they also learn that words relate to objects and activities. Over time, they may learn how to understand and express abstract concepts like feelings and wants.

This is a cute pic of Jojo during his DSI therapy working on sensory and pincer grasp using beans and pom poms.  The goal is to eventually have him scoop the beans into the bowl by himself.  Right now we do alot of hand over hand.

Autism does speak, for real!!

Today I had the most amazing experience. It all started last night. I had a "jojo needs to find his niche" night and I started think about something to get him to try, again! He doesn't show interest in anything but wheels. He loves to touch my tires on the cars and loves to be eye level with the tires on our Tahoe. So I of course bought every wheeled toy I could find. Dad even wants to mount a steering wheel on my wall. So I thought about a train set my older son had called GeoTrax. It was super cool and very durable, could most definitely withstand the fits of a toddler! So I rummaged though our old toy storage and came across a few pieces of Trax and one train.

This wasn't enough to really do much with so I googled and found out they are discontinued as of 2010, Nooooo! This was just more motivating for me and I turned to online swaps and Craigslist. I found a few but they were pricey because of the status of discontinued. I replied to a few ads letting them know my situation and I had one sweet reply this morning. "We have a special spot for autism in our hearts, we would love to sell you our set at half off" I thought, score!!! Went about my day and convinced my hubby that this would be it, jojos niche I just know it! He just went along with my decision and I left just before dinner to get my hands on those GeoTrax, I just had to have them!!
>>>>>>>Grab your Kleenex<<<<<<<<
I pulled up and immediately noticed a cool zip-line going from the two huge trees out front of this gorgeous home. I was greeted by a nice man with a firm handshake. He showed me the trains and I could feel his sadness. He started talking about how much fun his son had with the set and that it was the perfect niche for him. His son had autism. He then blurted out that his son was tragically killed in a car related accident. He and his sweet wife shared a heart warming story with me and reassured me that their beautiful boy Quinn would be very pleased to have his set go to another boy dealing with autism and that by them sharing it helped them too. I was so overwhelmed with emotion. I politely accepted the trains and after exchanging info to keep in touch I hugged them both tight. I could feel the gratitude they felt in helping my boy and I hope they could feel the appreciation and love I felt in that moment.

I learned a lot because of this experience. The sweet blessings of life are sometimes disguised in such away that you really have to take a minute and let gods loving way show you the good. Sometimes a blessing is both ways. Yes I was blessed by getting a great tool/toy for my son to try out at a great price. But the kind family also was blessed, they received a blessing of comfort. Comfort in knowing their precious boys prized collection is in good hands and will live on in great memories to be made. Fun times will be made and jojos beautiful laugh will be heard at the same time Quinn's voice will be heard in my home as well.

*This post is dedicated to the Levi Family in sweet memory of their boy Quinn, may he continue to rest in love and fulfill his hearts desire through his families foundation. Quinn's treasures will be up soon, I can't wait to
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