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!

My wonderful wonder

I think it's time for an update considering so much has been going on and changing.  I am so very proud of all the progress and hard work jojo has done. He has such an amazing team right now (it can change at anytime so I appreciate it so much) every successful session is so much more than just Jojo and a therapist, its a family effort. Its Jay and I actively being engaged in the moment and the Kids helping out and sometimes even doing the activity with Jojo. Its an all day thing. We learn from the different therapist and then as a family we ALL help carry it out into our day.

He has started stacking blocks, playing with toys appropriately about half the time, eye contact is so much better,  he is babbling more and more, has said yea, whaaaat, go, maama. We hear these words very sporadically. Im so happy he is trying. Some days he kinda zones but then he tries. Every little word he babbles and block he stacks makes me smile and cry. The tears nowadays are of gratefulness for getting to a good place. Seeing progression is beautiful

Jojo has had a lot of medical tests done.  We had complete blood work and chromosome array testing done last month. This was the hardest thing my sweet baby has been through,  he was so scared of the entire process. As soon as he figured out that we were in a procedure room he flipped out. Well the tech was obviously shaken by his screaming and after 3 ATTEMPTS my hubby tells her to stop and get the hell away. I was shocked because I am the emotional one but this was pretty much ridiculous. We left and no blood was drawn. We ended up taking him to his pediatrician's office and they did the draw in a few seconds.  I was so glad it was over with!

 During the next two weeks we waited for results and also had an EEG test done to rule out seizures.   This test was hard because of the way he had to keep his head still. With mommy and daddy literally holding him down the test was completed! !  Now, more waiting.

We carried on with the normal schedule, jojo is doing about 15 hrs a week of aba styled hab work and 2 days of speech therapy and OT is coming back on board soon. A few weeks ago we got the calls from the neurologist and lab. The EEG came back clean-no detectable seizures! Blood work was normal, thank goodness. Then he dropped the bomb. Jojo has a break in his chromosome number 6. The more techy term is a micro deletion at 6p23.1 at 459kb. Yeah its complicated but it means that you cant fix whats broke. Means I have a reason for the autism. Also means a whole new worry. Chromosome 6 disorders are extremely rare. There is not much info to go off of. I have found a few online supports and have taken in as much as I can. The final diagnosis from the pedi neurological exam and testing is now: Autism, Global Developmental Delays, Cognitive delays, Encephalopathy (nonspecific brain disease) Since im on a roll I want to note that despite all the Big Word disgnosis I am still going forward with the AAC language through motor planning technique. Its my best hope for a form of communication. He is trying to talk each day. During a puzzle building exercise he blurted out,"I did them!" Team jojo in full affect and always ready for the next adventure. Love you Jojo

Giving April the bird

The past few weeks have been mind blowing busy and guess what? I see no break in the near future. Autism is an energy sucking jerk. I'm tired. My boy is tired of it too. He seems so miserable lately. I don't know what happened that day 4-1 but it changed him. He has been sick since and has been moody. We have the first EEG tomorrow. Instruction for us is to -
Keep him awake till 10 pm
Wake him up at 5am
Keep him up till the appt at 11
LOL what a fun night and day we shall have. He wakes up twice (sometimes three times) a night. So he will be beyond cranky and tired. They are hoping he can fall asleep during testing. That is not gonna happen. I hope it does and I will be praying and doing all I can to try and make that happen.

There are a lot of viruses and tummy bugs going around right now so we last minutes decided to lay low today and the next few wks. Jojo has been on Antibiotics alot lately and I do not want him to be sick again and have to miss any of the up coming appointments. I am hoping to get them all in before the end of may so we can have a summer BREAK. Wishful thinking, I know! Well here's to a busy but wonderfully blessed week ahead!!

Worst day ever so, Now What?

Tonight I'm posting from my sons bedside.  I am using this as an outlet to free my mind of the crazy it feels tonight.  I am all over the place with every emotion.  It all started yesterday at 4:30pm, the worst day ever.

   The afternoon was like it always seems to be, Jojo running around while the older kids constantly ask whats for dinner.  Some days it gets loud and a bit chaotic but its US. But yesterday I was more in tune with the kids, I took time away from cleaning and doing my daily stuff and I watched a movie with them.  At 430 I always start dinner or at least stand in the kitchen and ponder about it.  I got up from the movie as Jojo took off running like he usually does (he runs up and down the path to the front couches and slams into them for a sensory relief) I usually just let him do it and go about my business but, I decided to follow him and I thank my heavenly father I did.  as he slammed into the couch I was right there.  He looked up at me and made a crinkled nose kinda look and opened his mouth to cry.  I swooped him up and said, "oh this time you hurt yourself baby." He looked like he was trying to cry but no sound came out and then he just went completely limp.  His little head fell back his mouth open and his tongue sticking out. his color went pale and he felt clammy.  I screamed.  I slapped him.  I shook him.  I yelled to my teenager to call 911, I opened the front door and screamed with all my might, "Please HELP me." I then (after about 15 sec) realized Oh my gosh he isn't breathing I gotta do CPR, I blew three big breathes into my boys mouth and he gagged and started crying the 911 operator told me that was good keep him crying. But he kept rolling his eyes back and looking like he was going to sleep.  My neighbor heard me scream, she has a medical background and came to help me.  We stimulated him by talking, rubbing the soles of his feet, and he just was out of it.  Finally the entourage of firemen, police, and ambulance workers came.  By then he was just too calm.  Normally he would be stimming like crazy from having so many people around and especially strangers.  I kept telling them this was not his NORMAL, then I blurted out he has AUTISM he is usually a spaz!! I then saw the difference Jojo went from the kid that just stopped breathing to Ohhhh he has autism.  I was asked if I wanted him to go to the hospital?  Ummm heck yes I do! Okay do you want to drive him or an ambulance? Geez really people? I'm near panic attack mode and they want me to drive? Nope I got the ride by ambulance because what if? what if it happens while im driving? What would I do?

   In the ambulance I was told I should go to a closer hospital because I had three kids at home and who knows if they will keep you over night.  I was SO confused, never in this situation before and I said to the guy (who was at the back of the table I was on) can you please move over here so I can see you? He did and I looked him in the eye and I said, "if this were your son would you go to a closer hospital?" he said yes, so I agreed.

   Ugh, reliving this moment is as bad as the first paragraph. The hospital is a well known children's ER in my area.  They are usually really good, I have been there before with my other kids.  But yesterday the DR I got was unbelievable.  I can sum up what he did for my kid in one word, NOTHING!  Yes, you read that right, he did nothing.  As soon as he heard the word Autism he immediately looked at me and my son and said very demeaning, "these type of kids do this all the time, they hold their breathe till they pass out. that's what kids with autism do." I did the wha the what look and said Ohhh no NOT MY KID! Jojo has never held his breathe he loves air and he uses it to fill his lungs and scream, all day EVERY DAY! In fact he now chirps like a bird. Yup he loves to breathe.  This Dr told me then, "I have been a Dr for 45 years and im telling you he is fine, im not ordering any test because the radiation exposure doesn't warrant the test based on how he looks"  But Jojo was too freaking CALM.  Not my Jojo he is never this calm.  I pleaded with the Dr.  I told him I didn't feel right.  My family that was with me kinda agreed with the Dr, But this is MY kid I knew what had happened...He hit his head too friggin hard and it caused this episode! I even asked for him to at least check his eyes, you know the pupil check.  He said he has dark eyes I doubt I can see anything and went through the motions.  An hour later I left.  Yup this all happened at 430 and I was home by 830.  I came home in a daze, literally scared of my own child.  How do I sleep?  How do I not hold him forever? OMG how do I stop him from hitting his head again?

  I am fortunate to have a huge support system and I used it, I had prayer from everywhere and a special blessing for Jojo by members of my church.  I received one too for peace and comfort.  It worked I was calm through out the night and kept Jojo close while he slept.  But I just couldn't shake what happened.  I called his developmental pedi and his regular pediatrician and we got in first thing in the morning. When the Dr walked in I gave Jojo a fruit pop and told the Dr I needed him to listen to me fully about what had happened.  I replayed it all, I took pics of the couch he slammed into and I showed him.  He LISTENED and GUESS WHAT?  He looked at me and said "your son had a seizure, I can tell you that when a child has a syncope episode that follows a time of tiredness and just plain out of it that is not breathe holding!
I left feeling a bit more confident and super anxious to see the neurologist as soon as we could!

6 Mo UPDATE and More

The last six months have flown by even though the days seemed like an endless array of crying, screaming, and stimming.  My sweet lil wonder has endured so much trial and error all because he cant communicate.  He still has NO words.  He does occasionally pick a sound and repeat it at random, just when I get excited about it  goes into his secret hiding spot.  Not speaking is one thing but he also still does not point to objects.  He can use his pointer on the IPAD like a genius but will not point at any given thing.  Some of the highlights and greatest moments have been affection and his smiles.  He hugs us at night and gives a "Jojo" kiss when he wants too.  He has started just recently doing a cute kind of wave and mouthing Buuuuh for Bye...I hope this one sticks!!  The look on his grandpas face when Jojo did it was priceless!!

With us hitting the 6 mo mark he had a eval and follow up with his developmental pediatrician today.  I was all ready with my top three concerns: Sleep, Aggression, and SLEEP!  The doctor is very non emotional and kinda blunt.  I respected this at our last few visits because in the autism world so much is uncertain, you never get a definitive answer.  With that in mind I knew what to expect from him, he would tell it like it is!  So I describe a typical night for him...it went like this:
-Lay Jojo down around 815pm, he tosses and turns and whines and then a full fit breaks out.  He will start banging his head on the wall. I go in to see if he is ok, lay him back down and try to soothe him and leave, this repeats till he gives up and falls asleep or I lay with him till he knocks out. He then wakes up multiple times starting at 11:15pm and cries, screams, hits himself or bangs his head.  I usually end up bear hugging him till he falls asleep,  eventually by 430am he knocks out for a good 2.5 hours.  (Yup that's a typical night)
to the best of my sleep deprived memory
DR INPUT:  So when he screams you run in there every time and resettle him?
Me: Yes, I have to because he hits himself?
DR: well if you run in every time its like a tug or war he wins every time, how fun for him.
ME: omg its anything but fun, do you see how exhausted I am? >crying starts<(and I wore mascara, nice!)
DR: You cant keep doing this, he needs to be placed down to sleep and no interruptions, watch him from a video monitor but do not go in.  His fits will lessen and his sleep will improve.  improved sleep will help with the autism like behaviors(stimming, scratching, yelling)
ME: so you think my going in and checking on him is causing his nighttime behaviors? omgosh its all my fault?
DR: No, its not causing it, its provoking it!  Autistic toddlers are very alert and super sensitive to stimuli, he cant speak so other sense are alerted, he hears everything, feels more, and smells more. Where does he sleep***the kicker***
Me:  My room.  We never transitioned him out because he is too loud at night and will wake the older children who have school, (duh, I'm thinking)
DR: Ohhh no no no, this really needs to change.

Sooo long visit short, we were instructed and educated about how important it is for Jojo to have his OWN room.  I would love to have my room back. On the drive home the hubby and I discussed how we can make this happen.  We have a pretty nice sized home, 4 bedroom.  My daughter(only girl) def keeps her pink room.  My 15yr  and my 10 yr old sons will have to share. Bahahahaa that caused a drama filled night. I'm going to do it, I feel I have to.  I KNOW its a hard change for the kiddos and I feel so bad.  Our life's have changed so much in the last year that this was not what I planned to do, for a LONG time.  I cant imagine a night without Jojo smacking me in the face to wake me up or just plopping his whole 30lb body on top of my head.   I don't know how or when I will do it but I know we have to try everything we can.

The dr ended his eval by telling us Jojo is Now moderate to severe classic autism with his biggest deficit being nonverbal.  I honestly thought that I would be like Jenny McCarthy and FIX him by now.  But I'm not a superstar and I'm not rich. I have no nanny but what I Do have is a perfect lil wonder who loves me and even though he cant say it I can SEE and Feel it with each and every hug! 

Terrible twos twisted with autism

   Oh what a week it was.  My hands are most likely going to bare the battle marks from this week for years to come.  Jojo as sweet as he is, can be very aggressive when he feels any sort of anxiety or if he just doesn't want to do a task.  He automatically just goes into baby wolverine mode and scratches me like crazy.  If I'm not right there he will find me just to scratch me, gotta love it.  At this point I consider it a sort of flattering thing, hey at least he is showing his emotion and he wants to share it with me?!?!  He has stopped hitting his head with his hand but seems to like the wall.  So its usually a quick scratch followed by a head bang to the wall and then a scream.  He loves to do it all in threes, we call it the Jojo trifecta.  The week ended with his ISP meeting and goal setting.  It was a good learning experience for me and an eye opener to how he reacts in different situations.   Compile that with a full week of ABA and other therapy and it leaves you with a worn out child and mom.

  Jojo has definitely picked up on his abilities and he isn't afraid of trying anything now.  He used to shy away from the slide but now its climbing up and sliding down everything.  He also mastered the "look", when I say No Jojo, he looks at me like...ummm why not? and then he of course does what he started!  Trying to discipline a toddler is hard enough but throw in a side of autism and there is a buffet of behaviors that just don't make sense and trying to decipher whats typical of a kid his age and whats a stim or a reaction to anxiety is just mind blowing.  I decided on the good ole "remove and distract method"  I have to place him somewhere safe, like on the carpet or his bed because he goes bananas when I stop him from lets say, climbing on the counter.  So I anticipate that he will throw himself about and bang his head so its on to a soft safe place and then I walk away till he cools down.  It works for him.  XX fingers crossed  XX

  Jojo did so much in a week and I am so very glad we got through it.  I look forward to getting into the consistent and structured ABA.   We have a habilitation/ABA trained worker that comes to help now.  This is very hard for me but I'm sure I will get used to the help.  I'm so used to being able to do it all, so for me its hard to admit I need the help.  She started last week and just did some get to know you activities and he REALLY paired well with her. 

Today (02/19/13) he had his first real session with her and he did amazing!  He was able to sort colors into proper groups and his IPAD ability just is unreal.  He may not speak but this kids voice is loud and clear.  He was able to understand the task and that was so cool!  I loved seeing him accomplish his task and then the happiness when he got his reward (playing for 5 min with a favorite toy)  We did this in increments of 15 min on/5 min off  and he responded well.  He gets a break for lunch and downtime and then back at it from 230-530.  This is pretty much our new schedule for mon-fri.  Its alot and the adjustment for all of us is different.  I feel torn between therapy and my duties as a mom/homeschooling to my two middle kids.  Its so hard to feel like I'm always lacking in one area.  The kiddos are doing well and I keep them involved, sometimes they do activities with Jojo too.  We all love to see his progression and I'm so happy that my older kids are just that, older! They understand more and can grasp the idea of having a little brother who needs extra attention.  Jojo is so blessed to have siblings to teach him and walk this path along side of him.

Noon mommy melt downs, anyone?

  I'm a been there- done that mama, done this so many times I can do most of it with my eyes closed, on no sleep, with a cold, and still do okay!  But today I had a moment.  I call it a moment because that's all I can allow myself is a freaking MOMENT!  I cant dare to take an hour or two and just let it really out.  I tried today, but it lasted from about 11:45-12:05 twenty minutes of crying, full-on snot blowing crying. 

  I struggle each day to keep up with my plan of "keeping it together" I try to make each day the best I can.  Lately, however its been so hard?  Sure we have all been sick and therapy had to be rescheduled so its been a different kind of few weeks, BUT I still don't understand why I cant just keep looking forward?  I keep focus and then BAM something sets me off and I'm back to the what if's and why's???  I want to be the best mom I can for ALL of my kiddos and each of them need me in such different ways.  My focus has been so much on Jojo and Autism that I feel so dang guilty.  I think I do pretty ok with making sure all my kids needs are met and emotionally they are doing well but, each day I wonder if I could do more? 


  My meltdown started with a nice attack from Jojo, he got me with the "trifecta Jojo move" its a scratch, pinch and a head to the face move.  It hurts!  My hands look like I got into it with a rose bush, my lip is swollen.  My toddler does this to me everyday, sometimes more than a few times a day.  Its not him trying to purposely hurt me (I hope) rather him trying to settle himself down?  I really don't know what it is but its getting out of hand.  I don't know what to do to control this behavior?  That's when it hit me, well he hit me but, I thought to myself : HOLY HECK I DON'T KNOW WHAT I'M DOING HERE!!  I really don't. I have been through the toddler years three other times.  This was supposed to be the breeze.  But, instead its a winding road that I have never traveled and I don't know whats around the next bend.  Its scary.  He make strides and then they just go away?  He was doing great saying maaamaaamaa and NoooNooo back and forth to us and now he just stares at me blankly or doesn't even glance my way.  I say "jojo" a gazillion (thats alot) times a day just hoping that maybe this time he will look at me or come to me!!
 *more tears, great*
He passed another hearing test so I know he can hear the sounds.  I just don't know whats happening from there on.  I want my Jojo back, dammit!  I want that sweet baby that would look at me and coo, I want him back, I want to join my friends at the playgroups, I want to see him enjoy life?!?  That's a whole other post, I think he is fine and happy the way he is, but apparently the right thing to do is to change him.  Ugh to much today and too much crying I'm done!   

So landscapers just showed up, He just asked me if I was ok and I said, " yes I am ok thank you" Im good at lying nowadays!  Gotta go time to snap on my happy face and do this!