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!

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!

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.

Why do I have to "fix" him?

So today has been such a crazy day. One of my "I don't want to do this anymore" days. That's so terrible to admit. But it's true! It's how I felt all day. like all parents I want the best for my children, but I love my different little wonder. I like how he is so content with his helicopter in one hand and his tag from his blanket in the other. He likes to squish himself between the window and the couch, who cares! He lays down to inspect wheels of all sorts, who cares. He flaps his ears, who cares!!!! He walks mostly on his tiptoes,seriously who cares!!

He is who HE is so why do I have to put him through hours of speech, occupational, behavioral, and now they mention physical therapy. It's all so much. It's by no means painful or in any way harming him physically but he is emotionally all over the place now. He isn't sleeping well either. He used to sleep ok, not perfect but doable. Now I'm lucky if he takes an hour nap. He wakes up throughout the night again. And the worst is he is getting sick so much. Third cold/fever/ear infection combo in the last 8 weeks. The therapist have all agreed to hand washing and sanitizing but it's not helping.

I'm obviously having a bad day. I'm tired and overwhelmed. I know I have to give him the best possible future and all of the above is part of the plan but I'm so afraid of making a wrong decision. Of course I want him to have communication skills and be on track developmentally but am I changing who he is? This is all so hard and Oh my I'm am so glad MY therapist is back from vacation because I need my hour of pure venting.

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!