Being sick makes him normal!!

Ok so I know that the word NORMAL is anything but the correct way to refer to a child but, geez I am so mind blown by his behavior when sick!  He acts just like a typical 2 year old.  He is of course whiny because he doesn't feel well BUT, and its a HUGE BUT...He gives me Love and is happy?  I have been told by his therapist that it can go either way.  Some kids with autism are more symptomatic while sick and others (like Jojo) are less symptomatic.  I hate having a sick lil guy but I love the glimpse into the way he really is.  I really think that when he is sick his body is so busy trying to fight off the illness that it cant stim or he doesn't have the extra energy to do the autism-like behaviors?  Here is the best moment thus far, I caught it in a picture too:

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.

The horrible reality of ASD and extended family

I remember when the first feelings came that something was wrong. I felt alarmed and my instinct was to call my mom. She is a great listener and I knew I could vent about all I had been noticing. She did just that, listened and then kinda shuffled me to a new subject. I hung up and felt like, hmm that was weird.

A few weeks later came the comments from a few close family members and friends/acquaintances:

"He is fine"
"There is nothing wrong with him"
"All your kids have allergies"
"He will grow out of it"
"You bought him too many toys too soon he is overwhelmed"
"You keep your home too damn clean"
"Stop worrying about it and bake a cake"
"He just needs to eat more"
"You read to much and I think you make him do that weird stuff"
"don't label him autistic it could ruin his future"
"He needs to go to church"
"He is just lazy"
"he is spoiled"

I could seriously go on and on. These were all said to me at one point or another and by people who are close to me. Some are probably going to read this. I think it's just a way for people to try and make you feel better. You know trying to sympathize when in reality they have absolutely no idea what life is like with an autistic toddler. I sometimes wish they could spend a day just shadowing what goes on. Just see what it's really like.

For me personally, the hardest part was feeling like loved ones did not believe me. I felt like I had to scream to the world, "hey listen here:  my kid is autistic and I'm not making this shit up!" I did eventually do this with my immediate family but some of my extended family has chosen to just stay away. That's fine and trust me my mama bear instincts prefer it nowadays. I'm not gonna lie and say it doesn't bother me because how could it not?

The way I see it is this, with autism and its broad spectrum you have two choices:
A. Do nothing and pretend it will get better.
B. Do everything you can, use all local resources and get the best therapy you can, no matter what anyone thinks or says. And it can't hurt right?

I chose B, I'd rather do "A" but I figured that I could do a two year plan for my family. We give it our all for two years of ABA intensive behavior therapy to in turn, give our son the best possible future. And in the meantime not worry about the naysayers! Yup, I am very offended by all of the above mentioned comments and frankly, I'm sick of the "try this and that" if there was one simple fix I wouldn't be up at midnight writing this!

To the other moms going through this, follow those mommy instincts and do what's best for your family. Research what's available. Discuss it with your whole family(we talked with all the kids when we decided) then hold your head high about YOUR decision. You are amazing and that's why you were chosen to be the mother of such an amazing and unique child!

If you are a friend or family member watching from afar. Educate yourself and watch your words. A mothers heart is fragile during times of diagnosing a child with a disability.

I found some great resources on the autism speaks site. It's my favorite go to for info on all things autism!!
www.autismspeaks.org

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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Isn't he supposed to say mama?

The fall is my absolute most favorite time of the year. I had been looking forward to all the fun holiday stuff. I really love to bake, and in AZ the fall is perfect baking weather. I also decorate my house as early as I can get away with, yup I put my tree up nov 4th!

The fall of 2011 was different. It started with sad news of my mom in law having a severe stroke. We were taken by surprise and just completely devastated. My honey spent time between here and San Francisco to be near his mom and help her. This turned out to be a life changing event in our lives, my biggest fan and support through all my ups n downs was now basically in another state and unable to communicate or walk. By the end November the family decided to bring her home. Its been just a year and I miss her long chats and the way she would just hold my lil ones and sing to them in Tongan and they would settle down. I often wonder how Jojo would be with her if the circumstances were different? I bet he would have a special way to communicate with her. The year he had with her before the stroke was just not enough.

My early signs that something was off really came to light during months 12-18. He had been walking for a few weeks and the started running, yup running!! It was so cute but also a tad weird to see this lil chubby baby running. He would run from one side of the house to the next. Back n forth and very fast. He was all over the place and had no fear (clue three) I could take him outside and he would run the yard and seriously not stop unless we stopped him. He would be sweaty and heart pounding so hard I could hear it. Then there were days when I would notice a cut on his toe or finger and he never cried or made a peep.  I would tell my hubby this is not normal!!

That would be the first of many instances that I would have to physically restrain him from hurting or overexerting himself.

He seemed most happy sitting with a pile of books or toys and left to explore. He would get upset when we would interrupt him to play along with him. I also noticed he still wasn't trying to speak. (no real babbling, only the occasional coo) I was getting more concerned but also trying to deny it! I just wanted him to be happy, he spent the first yr dealing with reflux and feeding issues so now that we had that figured out I thought he would be not so distracted with pain and be able to learn more.

By march he was now 18 mo old I still hadn't heard any real words. He did a sound like may-mum, it lasted a few weeks. Then he did one that sounded like gogogo, that too lasted just a few weeks. (huge clue/indicator) I was always talking to him and repeating consonant sounds by he wouldn't even look at me. I was really worried but read online that some kids are just slower at picking up first words.  I always seemed to be saying:  Isn't he supposed to say Mama now???

This is the time that I really didn't want to see the good ole pediatrician so I decided to wait till he was 20 mo old. I thought it would give me sometime to help him catch up. Yes I really thought it must be something I was doing wrong! So I regrouped and bought every learning toy I could find, set time aside each day to work with him, and I googled "delays in toddlers."

That night I figured that something was wrong. I was like a mad woman, I fumbled through websites and then it really hit me...He was no where NEAR these guidelines of development. So I got out all my kiddos baby books (I am a super baby book keeper..self kudos). I noticed right off that ALL three of my older kids spoke well before their first bdays and by two they had two word phrases and pretty advanced vocabularies. So I told my hubby that something is not right, my sweet boy could not do ANY of the "guidelines" except the gross motor, he was a runner!!
Here's what most guides suggest:
16-18month old  most toddlers can:

Turn pages of a book
Sing or hum a favorite tune
Say up to 10 words
Stack 3 blocks
Like to follow simple directions
Draw a scribble
Feed self with spoon
Sort toys
point to an object
*these are just a few*
My boy is now 24 mo and can sometimes do two of the above list.

I made his appointment for the dreaded well check. It was scheduled for end of April, right before 20 months.

This is us at a mommy n me Disney playgroup, I was talking him out of the ear flapping.  He just doesnt dig large crowds at all.  

How it came to be

On January 4, 2010 I woke up feeling different and had a feeling this was MY month to finally join the pregnant crew that had been forming in my circle of friends and family.  I waited all day and then did my favorite thing, I peed on a stick! At this time I had probably done this at least a few times a month for the past year, each month I would buy like ten tests and swear thhis was it!  This month was different, I was so shocked that it was a bright double pink line on the test!  I of course, went straight to the store and bought more expensive tests to "make sure." I decided to go to my sisters house because it was closer to the store and I couldn't wait.  So I tested and again, positive. It all seemed so unreal.  My youngest was already 7yrs old and we had a loss by ovarian ectopic a few years back so I was just ecstatic but worried.

 Of course I had to have a cool way to tell my hubby so I went home and told him I was pretty sure I was suffering from a blastocyst.  He kinda just looked up at me with his eye brow cocked and said, "uh what's that?" I told him we should google it.  Took him a good five minutes to figure out that a blastocyst is a very early cell formation that evolves into the growing fetus.  His look was priceless and that marked the beginning of our final pregnancy journey(thanks for the idea T)

 It was going to the best pregnancy ever, I mean I was older, I thought that meant I knew it all, and I had the financial means to not have to worry about the little things this time around, and the kids were older and self sufficient, basically well trained lil robots so this would be a breeze, so I thought!

Whirlwind pregnancy

Soon after seeing the double pink lines on my many home pregnancy tests the anxiety set in. I was in a constant state of fear. I just could not imagine going through another loss. The ectopic was very traumatic for me.  I was in and out of the hospital in pain and eventually had emergency surgery to correct some "bleeding" near my right ovary.  I was sent home told i was still pregnant but a week later the pathology report came back stating, products of pregnancy were found in the mass they removed from my ovary.  I was nearly ten  wks. So it was a VERY hard loss.  

This time I found a great obgyn that got me in right away. He saw me at just 4 weeks along and he tried to make my fears go but, unfortunately they were staying. He explained that an ovarian ectopic is so different than a tubal because of its rarity he did not expect it would happen again. I left feeling guarded and decided to give it a day by day emoitionless go. I would not allow my self to feel happy. Every slight ache or twinge sent me into a full on panic attack. I finally reached the six week mark and my dr agreed to check for placement of the embryo. I went in for an ultrasound and stared at that screen and when I saw the lil ball all snug in my uterus I cried. With each tear I let go of that fear and anxiety and by the time I was home I felt full on elation of pregnancy. We told the kids and life began to feel awesome, again!

This lil baby dubbed "the meatball" by the kids was loved as soon as we let the word out. It was just a complete joy to be pregnant and have older children be so excited. When I was about 12 weeks along and feeling great my older sister came to visit from oregan. We had a blast hanging out and she fed me well! I felt a lil special and it was just fun. The day she was to begin getting ready to go home I had a big time craving for sundaes. So my daughter who was 7 and my sister and I headed out to the grocery store for some goodies. We were half way done shopping and all of a sudden I felt a gush of fluid run down my legs, I looked and my pants were all red!

My sister swooped me up and ran with my baby girl tagging behind. We were all crying. I just kept saying "it's over. It's over". She took me to the ER and I called my hubby. He came right away and my sister took my daughter home. I sat there in my bloody pants begging for them to hurry up. Of course I was not considered a urgent need because once you tell them you are 14 wks they know the pregnancy is not considered viable and well, nothing they can do. I was finally seen and a nurse swiftly told me that miscarriages happen all the time and that there was nothing I could do. I just cried and not for myself but for my other kids. How would I explain that another baby had gone to heaven. Why?? I then was taken to ultrasound and the young man asked me why I was here and I told him they think I may be having a miscarriage and he said, "well here's a STRONG heartbeat" I was so overwhelmed with happiness but still I was bleeding. The dr came in and said I had a subchorionic hemorrhage. Basically a small portion of the placenta failed to attach properly to the uterine wall and it was bleeding. It's actually kinda common and usually will resolve itself. In my case it did resolve after six wks of bed rest!!! My sister stayed with us to help. She cooked,  cleaned,  and even homeschooled my two youngest and drove my oldest to middle school. I was so blessed to have her.

At twenty weeks we had our routine ultrasound and gender check. We were so excited. It's a BOY! We were happy he looked great and the dr said he had all his parts and measured fine. They did however, notice on the ultrasound that I was having contractions. They were not stopping so guess what....more bed rest and meds to stop the preterm labor. This was pretty much expected as it was the way my other pregnancies had gone. So I listened and made my camp on the couch and popped terbutaline as needed.
I spent a few nights in the OB Triage getting shots when the pill wouldnt work.  It made me and the baby uncomfortable.  My heart would race and I would shake from the meds, and so would the baby.  He never stayed still at all.

Fast forward past an amazing baby shower. My sister going home. The hubby having a sinus surgery. Kids starting another school year and the day comes, on September 8, 2010 (exactly two yrs after we lost the ectopic pregnancy!!!) our baby boy was born. Oh it was an easy peasy labor and best delivery ever. I went into active labor at 6 am. Got an epi at 715am and out he came at 845am. Who pushes out a nice 6lb baby in two pushes? I DO, that's who.

When I look back at the pregnancy and the bed rest I can distinctly remember asking my hubby and the doctor...how can this baby even grow because he NEVER sits still.  He was in a constant state of movement and always going. This would end up being Clue #1. When my precious boy entered the world my very first thought (after..omg I did it, again) was ohh he doesnt look fully baked (Clue #2), he just looked like he wasnt done yet.  I thought he looked like a fetus without the comfort of the amniotic sac?  That thought would run across my mind like a banner on a goodyear blimp for the next two years!