BIRTHDAY WEEK 7!!

Jojo is one amazing little, well mid-sized human. Progress has been just like past years, it comes in waves.

He has started showing and recognizing more emotions. This is so adorable. He says a random "hi" when he gets nervous or can tell you are upset.
Jojo loves to say "what's happening?" just about 20 times a day.  He can repeat just about any word now, initiating his own talking is tough for him. This is a current goal (requesting and labeling). He can count to 20 with little help.
Jojo knows his alphabet by recognition and can spell random words. He surprised us by spelling:
PRODUCTIONS
NICKELODEON

He is done with PT and IBT, we now just do OT, Speech, and have a para helping with homeschool curriculum. With our schedule not being so demanding we are able to do more and exploring his personal likes.

He has tried A lot of things for the first time recently and his favs are:
Happy meals...he calls it "happy nana"
Gum...oh he loves it
Tortillas...yup my boy!
Going to see horses or ducks at the park
Water play
And he absolutely adores his indoor swing and hammock. When he is in his zone, you can find him humming while swinging.

He is so tall and just big (4'2" and 64lbs) he is doing some of the milestones and mannerisms of a 3 year old or younger, like he started the Mamamamama, and he now loves to be held and cuddled.

I am loving the good moments and praying my way through the hard ones. This journey has been just about everything you can think of. I absolutely adore and admire my son for everything that he has to endure and for how hard he has to work just to get a simple need met. Sometimes there are days that he'll be saying something that sounds completely different from what he wants and I will literally take his hand and go walking around the house and try to get close to figuring out what this little guy wants and those moments when I actually figure it out I feel like I've climbed Mount Everest. And then, the look on his face when he realizes I finally GET it is the best ever!

Like I always say:   I will be here holding your hand through all of this. You and me kid, hand-in-hand... year after year... all the way to your college graduation!
I love you Jojo may your 7th year bring you nothing but joy, peace, and tons of learning💜

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.