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!

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.

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.

Patience...whats that?

Here's a short glimpse of my last week:  Oct 15-19

Monday: worst "autism-symptomatic" day EVER.  Jojo literally kicked, slapped and head banged everything he could that day.  I still cant figure it out so my best shot at trying to figure a "trigger" is a slice of cheese pizza.  I even took off nearly all the cheese, but I really think it was gluten overload. Gosh even typing that feels so odd, 10 months ago I was the OMG mom..Like omg who goes all gluten free? who buys all organic, who would keep a food diary..who does that? ME!  I have too.  Its the simple little things that cause his stimming (ear flapping, repetitive sounds) and melt downs.  His belly cant digest certain food correctly so he gets pain, real pain.  The sad thing is that its a hit n miss game.  I tend to just stick to what I know but he is now 25 months, he need more of everything ie..protein, fats, minerals, omega3..all the good stuff and I cant even give my boy a banana.  Ok back to my Rant, Monday down right by all means sucked!!  He was really hurting himself.  I tried it all, bear hugging, swaddling (yup YOU try and swaddle a 30lb toddler with the strength of a sumo wrestler) and water play, he took three baths that day just so I could put him down, the last bath, probably for a long time consisted of him trying to roll over face first and eat the tub, yup he don't care that he scares me because, well he doesn't feel scared himself..  ok I will spare you the rest of Monday.

Tuesday:  Therapy day whooo freaking hooo, more stress for the lil guy so I of course get him all dolled up and have my house perfect and then right before session starts, I get a cancellation text.  Ok I can understand we will do what I have been trained to do thus far.  We did some shape sorting, stickers, played with his sensory beans, fed him lunch, and awaited speech therapy, well she came late, but came ready to work!  I really like her style and dedication to my sons journey.  She spent 90 minutes with him and by the end of session I knew how to properly use a DnZ vibe oral motor tool.  Jojo liked this so it gave me a sense of hope for articulation to start once his stimming and sensory stuff calms down.  He even chanted mamamama a few times.  Now even though he doesn't direct them to me, I know my baby means me when he says it, right?

Wednesday:  My therapy day, my hour away to learn coping skills and just talk and vent and a "feel great when I am done" kinda visit.  This went well, the hubby came with me and that was supercool.  we snuck to lunch and just had a great morning.  Looking back, guess now I could properly refer to it as the calm before the storm!!! After we got home the hubby left for work and it just started.  Pure madness, it didn't matter what we did he got pissed.  At one point he pinched my arm and bit my boob so hard im bruised.  I was shocked and sad to the point of crying and just took him to his safe zone (his crib) and laid him down for a quiet time.  He seemed quiet so I told my 15 yr old to keep an ear out while I ran to grab a quick dinner to prepare (at this point something all ready cooked would have been a better idea).  When I got back it was all quiet and then I hear a squawk (yup like a bird) and I run to the room and holy shit balls, he had busted through his crib railing.  It broke the entire heirloom crib.  The frame was cracked and he was sitting on the corner nightstand looking pretty please with himself.  I screamed and cried in absolute disbelief!  How could just a cute lil boy be to strong willed and downright angry?  The night ended with crib torn apart in the garage and his mattress on the floor.

Thursday:  I had my first major, "I don't think I can do this" type of  breakdown.  The crib, the long term care, the therapy being cancelled all just set me into a frenzy.  I felt defeated and like Autism won, it kicked my ass.  I cried for hours though the day it was awful.. my eyes still hurt.  despite the bad day I feel like it was bound to happen and it needed to happen.  I am pissed and hurt that my son has autism.  I am still learning about what it all means.  I read a ton of books and this has probably overloaded my mind with both the good and bad of autism.  I am hoping and praying always for a better day!!

A great week, Who knew!

My Boy was HAPPY this week!
Nov. 9, 2012

This week was a great example of hard work and consistency paying off.  I know that day by day things will change for my lil guy but I relish in these good moments!  He is still having some sleep issues but overall, this week just rocked.  We started our week on Sunday with a successful hour at church and then home to decorate our Christmas tree (I know super early but , its a tradition here).  I was really hesitant to keep with the tradition because I thought for sure he was going to tear it down or it would tumble on him, but he did great.  The day before my daughter and I made him a felt tree we saw on www.pinterest.com and it was a perfect way to give him an alternative to play with.

                                        (cant flip it around, darn!!)

He likes the feel of the felt and of course the colors!  We put in on the way just across the room from the Christmas tree, so when he touches the tree I just redirect him to "his" tree.  So far, so good! 

 Tuesday is his long day of DSI and Speech therapy.  He was kinda just in a mood and gave his therapist a run for her money.  By the end of the first session he gave her about 20 minutes of cooperative play.  I was glad he settled and was able to do some of the activities which included:

*playing with LINKS, the simple toys that plug into each other to form a chain, this is great for fine motor.

*reading a book with flaps, this is Jojo's absolute favorite kind of book.

*worked on signing Our goal words are still:  Milk, More, Apple, Cookie, all done  He has signed milk    and  more but not too consistently.

Then his speech therapy started and he went nuts.  He was really not having it at all.  As soon as she came in he threw his head back and started pounding his ears and screaming.  I knew we were in for it.  So we did a swinging exercise to calm him and is semi-worked.  She decided to update me on some apps for the IPAD, and before we knew it this is what Jojo was doing:

Yup he just fell asleep.  I was actually pretty happy about it. To me it showed personality and a defiance, which I never seen before.  These days I take what I can get and make the most of it!  She spent the rest of our time chatting with me and giving me some great ideas and introducing a IPAD PECS system. We are considering using it but, its "another" thing I will have to be super consistent with so I want to be sure its something I can do.
Here's the ideas and things we did:

*Went over Ipad app;  Picture AAC (photo pec system)
*using vowel sounds for Jojo to mimic"ahhhhh" "oooooo" "eeeeee"
*pointing, touching, and saying everything to him

OT this week was just FUN, He loved it and so did I.  He did a fun art project using tissue gift wrap and a paper plate.  We put glue on the plate all randomly and then gave him pieces of the tissue.  He crumbled it up and LOVED the sound and feel, then he put the pieces on the glue area.  It came out so cute and he even put stickers on it.  We worked on the brushing techniques and he was really receptive to it.  She is ordering me a brush so I can do it through out the week and use it for a calming/sensory relief.  We also talked about swinging to replace the need to spin.  I looked into "swings" and found out that the Graco Silhouette swing holds up to 35 lbs!  I was able to find one tonight and he tried it out, it was nothing but giggles and then he had to try and figure out how it swings, LOVE my lil guy! 

It was just a nice week, so very thankful I am!