Thursday, July 10, 2014

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.

Saturday, May 17, 2014

Tsunami of Progress and Emotions

My Amazing lil wonder is really just that..AMAZING!!  We have had a whirlwind of things going on in the last 6 weeks and he has handled it all with no more than the occasional meltdown (that we have learned to minimize to less and less).

We had a follow up EEG and sleep study that was supposed to last three days in the hospital but we were out in less than 48.  The results were NORMAL and we were told that he is experiencing benign infantile spams.  So all the jerky movements at night that sometimes awaken him multiple times is just a thing he will hopefully grow out of and is pretty common in autistic kiddos.  The one syncope episode is still unexplained, that will forever be in the back of my mind and even though I try to tell myself that it "just" happened its ok..I still worry about it happening again.  Jojo did so well during the testing, he handled it like a champ.  He was well taken care of by me and his daddy and the team of nurses and child life experts at the hospital.  they had his room all sensory friendly and he LOVED the view.  I was thankful we were able to leave early and that everything was ok.

Our therapy routine is so different now but a good different.  He is doing his OT sensory/fine motor at a clinic and speech is in home with a therapist.  We have our HAB/aba in home and hours are slowly increasing. We are up to five days a week summer schedule.  He is adjusting pretty well and making great strides.

Tuesday, April 1, 2014

Autism Awareness. ..I'm too aware

April is worldwide autism awareness month and specifically the 2nd, being the day to show support.  I plan to light it up blue with some cool led balloons, encourage all my family and friends to wear blue, and bake a cool gluten less cake for us to enjoy.  Then I will probably cry..Again! I'm 18 months into this new way of life and really it's HARD.  Of course, we adore our son and he is spoiled by his siblings with endless love and concern. His team puts in hours to teach and guide both him and us.  But it's hard! I also know that hard things teach us good things.

But for right now this is my personal account of how aware I am:

  I'm so aware of autism now that it hurts.  And when I say hurts I mean it in every way. Here's what it is like for ME, as a stay at home mommy of 4. My older kiddos are 16, 11,&10 (2 are home schooled) Jojo is 3.  He was DXd at 24mo right before he turned 2. So after 3 yrs this is my account of being fully aware of autism.

Emotionally I'm a mom that has been advocating since the day after he was diagnosed for every service and support he can get.  It doesn't come easy and takes a toll on ya.  At first, I felt so on top of the game because I was able to get myself very well versed on the "system" and the interviews came and went,  mostly in my favor.  After so many evaluations though, you start to avoid them like the plague.  Who wants to hear that progress has stalled out or that for the last 18 months your child's cognitive status is that of a 15 mo old or maybe I might hear 18 mo, if the evaluator feels bad for me.  It's hard to hear. So you take the positive and run with it....you share with the few (and it's just a few, for real) the moments that seem so huge now.  He made it through a drive thru without banging his head!! Or we went to a birthday party and lasted almost an hour! He did a great job on a therapy day! Made it through a whole week without breaking down! I really only have a few people I can talk to and be real about the triumphs and the knock down days.  Those good days leave me with a sense peace and hope for a good future for my lil guy.  The hard days leave me feeling lost.  Defeated. Depressed. And plain sad. 

Then there is the guilt. I am constantly in a state of guilt for my older kids.   They are going through this process with us.  They can see and hear and feel it all.  They have been great with telling me when it's too much.  I make time for them one on one,  but I feel like I miss them terribly.  I am planning on transitioning my 2 into Public school next year.   Only because I feel they need an outlet. That's so hard for me because I love home school. Can you just imagine this emotional roller coaster?

physically  I am just exhausted.  Sleep deprivation never goes away.  My hubby and I trade off on night duty. We both need a good week of sleep. Jojo has never slept thru the night. Not even after being sedated  for surgery,  as soon as he decides it's time to get up he just goes.  This is taking a toll. Heck I need my beauty sleep AND a great concealer because I'm looking like I could cast for walking dead.  I am fully part of his therapy, I love seeing him complete a task or try so hard. I often wear battle marks form his session's. He doesn't want to do things the way we expect, he has his own prewired planning going on.  So I get the jist of his aggression and my body is bruised and the scratches turn to scars.   Somebody asked me if I had some disease that cause the spots on my hands. .nope just a three year old with non verbal autism.  I have torn shoulder ligaments. Back spasms and old issues have came back with vengeance.   Anxiety and insomnia are my battle. They are evil because the end  result is usually increased pain. But I just can't help myself,  I am so used to fixing everything for everyone so at night when the house is quiet I research what may be the cause of a new behavior or stim. When I do fall asleep it's cut short by my lil guy waking up to just see what's up, so I'm always running on empty.

Autism..really?

This the WORST part of having a child with an invisible disability.   He looks completely normal, well actually he is an  absolutely handsome lil guy! He stims a lot.  He is loud.   He moves differently. He walks on his toes. He flaps his hands so fast when he is happy or excited. He squawks like a pissed off bird at least 80 times a day. I see the looks and feel the sting of comments. I can ignore most but some cut me to the core.  I want to tell Em...He isn't a brat he is flipping out because the lights just flickered and I turned my cart left and not right! ! He has Autism and sensory processing disorder and chromosome 6 deletion all of which causes global developmental delays, and he can't speak so he screams. My baby is 3 and a half and he can't speak,  sure he will mimic a prompted sound here and there and he will sign EAT and MORE. All of which this mama is extremely thankful for but, it doesn't pacify the need/want to hear those precious words: I love you mama. 

I long to hear you voice, I dream of just walking hand in hand with you around the block talking about the beauty around us. I imagine the feel of you gently giving me a hug. I am aware that Autism is here to stay,  yup it stays. No gluten free hyperbaric oxygen therapy with a side of the latest supplement is taking  this away.  My son's brain is wired differently.  His neurons fire too rapidly sending all sorts of mixed signals. He is amazingly different and someday the spinning may slow and communication may start and when that day comes I will be the one flapping and screaming! !
#TeamJoJo forever,ever ♥

here he is sitting in a discovery bin.best way to play (:

Sunday, March 30, 2014

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

Thursday, February 6, 2014

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

Monday, January 13, 2014

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

Thursday, December 12, 2013

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!