Monday, September 7, 2015

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!

Wednesday, May 13, 2015

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!

Sunday, September 7, 2014

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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Thursday, July 10, 2014

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.

Saturday, May 17, 2014

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.

Tuesday, April 1, 2014

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 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.


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 way to play (:

Sunday, March 30, 2014

Therapy clinics. .ekkk

Jojo will be starting at an Autism center this week.  I am so overwhelmed by it all.  I am terribly worried about him not understanding what's going on and why I am not sitting with him and participating. I will be in a family waiting area and I will most likely be a blubbering mess.  At this point since, We reached a stall in progress in the area of OT (occupation fine motor, sensory, vocal stimming, oral motor) this is the next step. 

From day one of realizing that this is a lifelong diagnoses for us I promised myself that I would always try no matter how uncomfortable I feel.  I have to at least try because what if? What if it helps? 

I am constantly fighting an internal battle within my mind. I want to protect him and teach him. I want to keep him with me always so I can keep him safe.  With all the ups n downs we, as a family have faced I can't help but be that helicopter- over-protective mom.

Just going to church starts with a huge panic/anxiety attack.  I start  by being that super together mom. Having a bag of tricks packed and ready to go for distraction methods during sacrament meeting.
My goal each week is to make it to sac meeting and stay for that hour then
Quickly and quietly slip out ..why?
1. Jojo naps at 12. And when his schedule is altered he becomes agitated and the vocal stimming starts.
2.  I can't expect any primary teacher to handle the distraction and aggression that happens when he is unfamiliar
With people or surrounding areas.
3. His cognitive ability is that of a 14-16 mo old so his primary class won't make much since to him just yet.
4. He is nonverbal;  meaning he is unable to express what he needs or what's going on.
5. He is still in diapers (making great strides but communication makes this a lil slower).

So between 4 days of therapy and church I am pretty much ON all the time.  It's not getting easier.  It's more like a never know whatcha gonna get life.  Every day is different and every hour I try something new to bring him out. #neverstop
Team jojo