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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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.

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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Sensory Play & Relief

I have been learning So much about the sensory side of things.  Like, I know that when My son is spinning and flapping its because a need in his sensory system is not being "fed".  When he is angry or screaming its the same thing, he need input/output.  So here's a dandy little list of what we now do to help relieve some of that need:

   Bean Bag therapy:  We have a simple medium sized bean bag.  We toss it across the room and jojo runs and "crashes" into it.  we do this about 6 times and its just enough for him to get out that need for input.  Sometimes he will initiate this himself.

Joint decompression:  Hard to put into words but here it goes, I start at his wrist and wrap both hands around it and gently do a pull or tug to release tension at the joints.  I do the wrist, elbow and shoulder.  then the ankle and knee.  He LOVES this, it feels good and relaxes him.

Blanket drag:   Place a blanket on the floor, put my kiddo in the middle and simply drag him around.  We do this for about 15 min or as long as he will allow it.  we have wood floors so this is pretty fun and easy on my back!

Burrito Roll Up:  Roll him up in a blanket, pretty tight BUT DO NOT COVER HIS FACE, and then unroll.  He gets a kick out of this one for sure.

Pushing Heavy Objects:  This one he was already doing and I was stopping him, but its actually a good thing.  So we have an ottoman that is pretty heavy and I flip it upside down and he pushes it back n forth.  This tires him out and stop his need for running obsessively back n forth down the hall. 

Trampoline  This one is outside and its been pretty hot here in AZ. so we haven't given this a whirl yet.  but with the way he bounces around on his tip toes i think he will love it.

Brushing:  I am excited to learn this one this Friday!  Jojo responds so well to firm pressure massage and the joint movement that I think brushing will be awesome too!  Its basically a natural bristled brush, soft one of course and you brush the child's skin.  I think this would really help with the "not wanting to be touched"  showing him that touch is OK.

Just a quick update:  Yesterday during speech we downloaded some pretty cool apps on the IPAD for jojo to work with.  I am amazed at the technology and how he can pick up how to use them.  even though he can not yet, use his pointer finger he has managed to use his knuckles to manipulate the ipad, cool!  here are the apps:

INJINI Lite (full version is 29.99..yikes) great for attention keeping, and color recognition
BABYEGGS Lite  great for animal sounds, colors, counting and basic letter sounds

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!