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.

2014 here we Go Go Go

The New year is underway and I already  feel so positive about my lil wonders progress.  He is trying to talk so much.  He has been over taken by the squawk for quite sometime so at this point any verbalizing whether a babble or partial word is just complete joy.
He finished off 2013 with a great team of Speech, Occupational,  habilitation, and an amazing aba/music/floor time therapist. We are the perfect mix and he seems very pleased with each one.

Over the holidays we anticipated a few wks off therapy so I decided to buy a cool dvd series called a Baby Babble. It's super neat. Definitely has help jojo to see and hear a word in his favorite format..TV with different sounds and toys.  It's so cool because it's very similar to a speech session implementing floor time therapy.   He is on disc 1 which is for 0 to 12 months. He can repeat about 40% off the sounds. And a few words too. His favorite is Go.  I'm glad "go" is making a come back. It's part of his list of words he used to say. I love the last part of the session because it goes through 10 signs to be consistent with and gives ideas on getting your kiddo to want to talk. I got the dvds on Amazon for around 30 bucks. Absolutely recommend them if you have a nonverbal kiddo or even a baby. It's a great way to learn the basics on helping to encourage speech.

So our goals this year include:
Continue all therapies
Intro a music led program
Potty training

Here's a great story to end this post with and a encouraging way to start the years goals.
1/13/14
JoJo's daddy is away on a business trip.  He adores daddy and waits for him each day.  Today at bedtime I said,"come on jojo time for night night"  he looked at me and gathered his blanket and went to the room. He climbed in the bed and looked up and said: da da a da da No. I was so happy he said da da so I picked him up and praised him and since he was giggling I decided to rock him for a lil  bit.  I cradled my 37lb toddler and began to rock him. Right as I started to sing he looked at me and started talking and babbling: my ya da da da Noo da da bay bay may ma"
He went oh with other word sounds. It was like he had a story to tell. So I listened. I acknowledged everything he said. He then crawled into bed.
* cherished memory*
Never give up
#team jojo

A great Month for us

I say amazing in the meaning of how I feel.  When I reflect on the month of October im completely surrounded with thoughts of love and friendship.  It was a beautiful month.   We learned so much about Jojo and the reasoning behind most of his behaviors . We started the month off by getting fully into our regimen of Speech,  Occupational therapy,  and full habilitation Services with an ABA trained tbetapist.  We average a pretty busy schedule but it is fully able to be implemented by a family starting out.
At the present time we have:
Saturday,  Sunday,  and monday  as family time and No Therapist.
(We still do his activities through out the day and keep his schedule on)
Tuesday: morning is off.  Hab/aba comes  fr 230 to 5pm.
Weds: hab/aba fr 8am to noon
Thurs: OT fr 8-930 nap time then 2-5 hab
Fri: Speech 9-10 and hab/aba 830-12
We average 15 hrs a week. I use this time as a way to absorb all the info I am hearing. This way I can continually use the techniques the same way the therapist do.

During therapy it all seems so easy. But when you're in the heat of the day and just trying to get by it seems hard to stop and do 15 or 20 minutes of some sort of activity to get your child calm. But by keeping at it and seeing it as a routine I am able to do it. For Instance,  before I start cooking dinner I will go roll on the floor with jojo and then do a deep pressure massage touch on his legs arms and shoulders. This relaxes him and he can focus on a task. Allows me enough time to get my task completed too.  if that doesn't work I call in my enforcement helpers aka the older kiddos they like to do therapy fun with jojo.  Its a win win!

October also was the Autism Speaks walk.  My whole family and jojos therapist all came. Even their families came to be supportive.   It was amazing.   The whole process and feeling was just overwhelming but also freeing for me. I was so  nervous to see so many affected all at once.  But it was beautiful.  The love and support from family, friends and volunteer community members was awesome.   What a huge accomplishment!  Jojo loved the nice long walk and enjoyed an apple along the way . This day was my  birthday and it was perfect! 

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

Long Term Care? Really???

So I have to admit that all I really knew or thought I knew about Autism was from a movie I saw years ago.  It portrayed a man that had a fascination with numbers and repeating things, nothing too bad I thought back then.  And in all honesty when I look at the whole picture and what I am dealing with I feel the same, Its not too bad.  Sure, I am completely overwhelmed by appointments, therapy sessions, lack of sleep, financial output for it all,  and just the daily routine of having a little guy on the spectrum.  But, It could always be worse.  I am so very thankful for every little "ah" "m" "ga" I hear from my son. 

A few weeks back my sons coordinator mentioned that we needed to apply for Long term coverage.  I just kinda pushed it back into my "think about it later file" and when it came up again I was like huh? What do you mean LONG term coverage??  My plan is to kick this in the ass and be done with it.  I never looked past his toddler years.  I guess the BIG picture is that there is a possibility that the outcome could not be what I imagine (huh, really?) and to safeguard his therapy and coverage we have to apply.  So I did and our app is currently being processed and what not.  This is one thing I just don't want even think about.  I picture Jojo being a typical kid in a few years and you know what?  I'm keeping that picture.

This week has been a HUGE step for us.  We went from one day sessions to three!!  I had all sort of new things thrown out to me.  The notes I took are a mess but I'm glad I took them.  The speech part of things is finally coming more into the front lines now.  I learned that jojos fixation with a binky isn't typical binky love, rather its a need to have his mouth full and busy.  So there is a great Oral motor tool called a DnZVibe, its basically like a plastic wand that had different end tips that he can chew on, suck on, and drool all over and think he is having a grand ole time but really it will be helping to relieve his sensory need and developing some proper use of his tongue to help promote speech.  I just ordered his new tool tonight and I'm super motivated to have him give it a whirl.  She also mentioned getting him a chewy tube, I have been reluctant because it just seems like another thing to suck/chew on and well I have already bought a ton!
We also used the Ipad and got some cool apps to start using during and in between sessions:  here's what we are using
*Fisher price ABC, Animal sounds, Body parts apps
 *Picture AAC app(uses pics and my voice to help jojo correlate sounds to objects)
*Using Hand over Hand to initiate activities that he is working on.  I am really hoping this will help with self feeding. 

A fun fine motor activity we did this week was with dry beans and pompoms (the cute colorful small furry balls for crafting) we put all the beans and poms in a big bowl, gave jojo a spoon to use to fill the smaller bowl.  It took him a awhile to not use his hands but he did it!!  He did three scoops n dumps into the bowl.  I am so proud of him.  We are also working more on the hand-over-hand approach to encourage the touch and feel of me helping him and to help him accomplish a task and getting praise.

Bean Bag play/therapy!  This is so cool to play and watch.  Jojo first speech therapist had a bean bag in her office and jojo loved it.  He laid in that thing and just looked at peace. So for his birthday my mom got one for him and he has been having a ball with it.  Now it is used as a sensory relief for him.  we toss the bean bag and he runs full force and crashes into it.  He loves it!!  We do this five times before they start a session to relax the sensory need and it seems to work.


All in all it was a hard week with lots of small hidden treasures that I sometimes have to look really hard to find.  I am going to give the month of October my all and make the most of the craziness that happens with multiple sessions in a week!  More posts soon and I plan to be detailed on the activities and what we are working on so I can help others.

Team JoJo

Side note: Another very interesting thing I heard during therapy was that one of the therapist had recently attended a seminar discussing ASD and she heard an interesting piece on a possible link between autism and the brains use of mirror neurons, basically lacking the proper mirror neuron system.  I found the article online:  I read It completely and its a lot of scientific jargon but ultimately really made me think...could there be a real link to possible RF usage in our homes and ASD?  I think so, its definitely a possibility!

Out of time: A possible link between

mirror neurons, autism and electromagnetic

radiation

Ian M. Thornton

www.ianthornton