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 therapy..ie 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

Genetics and more!

   We finally had our long awaited genetic appointment on 1/28/14.  I took me this long to write about it because its just hard.  Its hard to deal with all the what if's and the unknown that having a chromosome abnormality brings.  The genetic team was pretty darn amazing with how they handled Jojo and his sensory processing.  He gets very agitated and overwhelmed in new places and especially with 4 doctors all around in an exam room. The whole appointment lasted about 2.5 hours and he managed to not have any huge meltdowns.  They examined every inch of my kid.  They noticed the littlest things, like tiny birthmarks, the position of his ear vs eyes, they way he looks when he is just chilling to how he breathes in a resting state.  After all was talked about and looked at we were told that because his deletion (chromosome 6..specifically 6p22.3) is so rare they don't have much to offer in way of advice or what to expect.  She did noticed that Jojo takes some deep breathes for no apparent reason and so that will be looked at during an upcoming 24hr observation.  He will also have an EEG while there and a sleep study to see why he is waking at the same time every night and and to see if there is a correlation between the laughing spells and his waking.  They also did further chromosome testing, specifically looking at chromo 15.  They told us some of Jojos symptoms are characteristic of Angelmans syndrome.  While im very thankful to have the opportunity to see a genetics dr and try to get answers I have to say, ignorance is bliss! I was just getting used to autism with a side of chromo 6.

 I tend to obsess over what they suggest is going on and the reality of the fact that he has so many hurdles to cross.  As he gets older the developmental gap is getting bigger.  Its not so easy to pretend that he is just a lil slower than his peers.  Its heart wrenching to see what he "should" be doing or to hear that at 3.5 yrs old he is still at a 14mo cognitive level.  I usually go through this weird down in the dumps kinda mode for about a week after an appointment.  I spend that week researching every new term I heard and trying to think of new ways to approach learning specific to Jojos needs.  Then I snap out of it and realize that he is making such great progress, in his own timing. He really has had an amazing few weeks with lots of new sounds and babbling.   We hear words but consistent use of the few words he has is just not there yet. 

 We have an exciting new opportunity that we heard about through the chromosome 6 group we belong to, It's called IRUN4, a nonprofit organization that matches up runners with a child or adult with a disability.  I was so thrilled that we got a match the same day we signed Jojo up.  He has a huge Love and desire to run.  He stared running before he even walked..no seriously!  He went from a funky crawl to just running. He wouldn't stop and it was one of the first things he did that was just a lil different than our older kiddos. He ended up getting so into it that he would run till his heart would beat so hard and fast he would get winded. We had to stop him. So now we go outside and have to restrain him from running because he will just run and not stop..But now he has a runner.  She is pretty amazing too with a great story. We adore her already and Jojo loves seeing her posts and pics. To get more info: www.Irunformichael.org

   Jojo has two super cool new signs and it's been 2 weeks so I consider them here to stay.  He signs EAT and will get so excited when he gets food be a use he ASKED for it!  He also signs I potty and is doing pretty well with the first stages of potty training.  I am just amazed by his drive to learn and his ability to overcome hurdles one by one. 

Hand in hand, all together.  We got this!
#TeamJoJo

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! 

Walk now for Autism2013

I I'm so happy to walk in this years autism walk.  I have raised over 280 so far of my $500 goal. I am so excited to raise enough money to provide a family with an iPad which will give their child amazing technology and the ability to communicate with them ! This has been a huge tool for our family, I don't know what we would do without his iPad we are very fortunate.

So please join us on October 27th at approximately 9 a.m. To do the family 1 mile funwalk.  If you are unable to join but would like to donate to our cause you can do so by simply following the link and searching for our team name: team jojo rocks.
Www.walkforautismnow.org
Thank you for all your support we love you all!!
If you have trouble visit autismspeaks.org

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.