Nathan got his A.C. DEVICE!!!!!!!!!

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Nathan got a box in the mail today!!!

We opened it up and it was his NOVA CHAT 7 ..... Woohoo!!!   He was so excited!

We are just doing a rental basis right now - which is $75 a week ... but it's better than not having it!

Nathan's I.E.P - 2012

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 Actually - I can't say that I have to fight for much with Nathan.  I had to fight more for Cal and Noah than I have with Nathan.  I'm pretty happy with his team at his school.

He has improved in a lot of areas however .. his speech goals are the same since his speech hasn't changed much. He's attempting to say a lot more, and is being more of a parrot - but the quality of his speech hasn't changed much.  His teacher commented on how she can understand him but others can't.  I said "Welcome to my world!" LOL...

 He's getting longer Occupational Therapy time.... and they were thinking ahead to next year and gym... and how much more .... ah the only word I can think of is violent - but that's not really true... forceful maybe? Anyway - they started to talk about how gym in 1st grade changes to a lot of throwing balls and such.... and I start shaking my head no.  LOL...  .... they are going to keep him in the kindergarten gym class until he's more size appropriate and ready to be playing with flying balls and kids who aren't paying attention to the tiny kid.  Otherwise OT is going to be working on writing letters, cutting with scissors, and doing things like zipping and snapping and such which is really hard for him.  She also said that with it getting colder here now, he doesn't like to go outside.  Ha ha.  So they make them go outside for at least 5 minutes and she says that he just stands at the door and stares at her.   I couldn't help but to laugh.

 He's made some improvement from last year where he's not spinning a lot.  His Occupational Therapist (who was with him at the preschool) said that.  She also said he's a bit more engaged with the other kids.  They said that he knows when Matthew (one of his classmates who is in a wheelchair) gets frustrated and he goes over to his desk to help him out - and they are back there working on stuff together.  I love hearing stuff like this.   She also said he's not staying in the beanbag/papasan chair all the time either, like he was the beginning of the year.  He lasts about 5 minutes or so in the regular classroom before he gets overwhelmed.  In the inclusion room he can go at his own pace and get up and do other things too, if he needs to - and he can go in the other room and jump on the balls or what not ... and he does so on his terms...    Over all he's doing well and he's working on the kindergarten curriculum - in the inclusion room - so YAY!! Everyone agrees that he's super smart he just can't communicate.  :)

They said that they are going to be working with him on doing things like - asking for help, or asking to go to the bathroom.   I want, I need, etc.   They are making him talk and pointing doesn't get him anywhere - and I said "good, cuz it doesn't get him very far at home either."

They say he's a super slow eater... LOL... but he does good, he usually only eats half his meal, but at breakfast he LOVES bananas and he will eat several...  which is very typical of him. He loves his fruit and he loves his veggies.   He's drinking his Pediasure at school, so yay!  She says sometimes he doesn't drink it all - and I told them that's nothing abnormal.

We also talked about his P.O.D.D. and how Nathan lost it at home (or Kaedyn did) ...  and how I haven't been able to find it for about a month now (sigh) ....   and how the Nova situation is going.

The Nova Chat 7 is his electronic communication device.  He was evaluated in May and determined he would benefit from one... so the process started and we were told we'd get it in about 5-6 months.  So I called prior to Thanksgiving to see how things were going - and found out that our amazing Marci who's dealing with it all had turned in the paperwork, she got an email confirmations back saying they had gotten it - but come to find out - there was not record of the paperwork.   So we're basically starting back at square one there.....  ugh....

So - that's about it .......  :)   IEP is done until next December. 

Alternative Communications....

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So in May, a few days prior to Nathan's surgery, we had a very long awaited and exciting appointment.  Nathan has been working with his Pod (communication book) for awhile now.  He is finally learning to to navigate through it a little better but it's still very hard for him (and for us) ...

 Nathan's Pod (communication book)

We've had our hearts set on an iPad and ProLoQuo2Go Software.......  (you can read more about at iPAD & AUTISM)  It was the first software that I became aware of .... so of course, I thought it MUST be the best.

It's not.

Nathan's appintment started out simple enough - working with the Pod book just to get a feel on if he could identify photos and use them for his needs - which he did very well using both balloons and bubbles....

Then she switched to using different electronic devices to see which one (with program) he worked well with best ...... (there was a lot of bubbles going on!) 

He is getting a Nova Chat 7 System ... it is lightweight, has a built in handle and stand, amazing program that will actually predict what you might want to say next and put those options up for you ....  you can put together sentences ....  and the program with GROW WITH HIM ....

Nathan was very proud of his "Taxi" Ride of the day ....  

 *BEEP*BEEP*BEEP*  Move out the way!

 Here he is practicing on the device he will end up getting in 4-6 months (depending on when insurance gets it's head out of it's behind) .... 

We are SOOOOOOOOOOOOOO very Very VERY EXCITED!!!!

Nathan's I.E.P....

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 Nathan's I.E.P. meeting went well.  He has made some progress ...  his vocab has improved a little but his speech therapist.  They said that he's interacting with the other kids a little bit ... however, he still prefers to play alone or with Kaedyn.  However, there is some interest there.  They said he loves to sit in the reading corner and just read.   They have noticed his sensory issues coming into play but not as often as they were at the beginning of the school year.  Over all - he's doing very well.   He has his issues, but he's an amazing kid - and they ALWAYS miss him when he isn't there.

I was super excited when they handed me his communication book!!  We're not having an easy time using it...  it's HUGE and it's a little hard to follow :(   But I'm excited...

I have to say that his most ABSOLUTE FAVORITE thing to do is to sit in the swing....

 He and Kaedyn play very well together :)

And here he is in his favorite reading spot :)

iPad and Autism

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So I'm working on a presentation for my Multimedia class.   It's entitled: "A Day in the Life of a Technology Savvy Autistic Child."  It's basically just some pictures of Nathan watching TV, playing on the computer, playing on my cell phone.... watching the sewing machine... etc.  At the end, I added this video.

It's from 60 Minutes - about less then two weeks ago...


It's one of the things we're fundraising for.  The communication device, that makes sentences, would be AMAZING.  The sooner he gets it - the better.  We're also raising funds to get the conference this coming summer in Illinois.  Families affected by Russell Silver Syndrome and the leading experts are all going to be there, not to mention getting an appointment with THE leading expert on RSS to get medical advice on how to help him.

There is also an article here: How iPods & iPads Help Autistic Students

This is the App we want to get him.....  ProLoQuo2Go

August Update ....

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I haven't updated in a long time......  I took a blogging break over the summer, for the most part.  After realizing there was NO WAY we were going to get to the conference, I honestly had a moment of ... grief, I suppose that's a good word.  I really wanted to get us there.  But the conference has come and gone, tons of families in our network went and I saw all sorts of blog posts & pictures .... it was all bittersweet ... seeing them with one another and then thinking, Nathan should be in that picture.

:: sigh ::

 Kaedyn has been running a 103 to 105 temp fever ... it has been driving me INSANE ...  from Thursday night to yesterday (Monday) ... I have been sleeping with a burning up baby in my bed and we don't have a big bed.  Barely have room for Dennis and I ...  add in a big baby and ... well...  I don't sleep much.  He has been MISERABLE ...  you can see more from my other blog with .... 104...IS NOT A GOOD NUMBER and 104 ... IS NOT A NICE NUMBER x2  ...  Thank freaking GOODNESS that he's FINALLY feeling better.  Hubby took him to the DR yesterday while I was on my way to Seattle with Nathan .... the DR confirmed she thought the same as the Urgent Care Doc on Saturday, that it's just some virus that is kicking his ass and not leaving names he can't seem to break threw... but GOOD NEWS is .... he has finally broken the fever and is starting to feel better.

ALSO ...... Noah broke his nose this summer!!! CRAZY!!!  You can read about that one my other blog right now .... ANOTHER BROKEN BONE and NOAH'S SURGERY ...  

I guess at the DR .... the nurse took Kaedyn back, and mind you - he suffers from clingontomommy syndrome ... and he had just watched me walk out the door without him, just before leaving with Daddy...  so he was still in that gonna break down and cry at any moment cuz I want my mommy area...  and the nurse said to him "Boy, o' boy, I know who your mommy is just by looking at you"  HA HA HA HA HA ....  and my poor little boy just burst into a bubble of tears with the pathetic "MOMMA" whines in there.  Yep...  ha...  oh and apparently the DR thought my note was funny cuz I put as a "symptom" ...  super crabby & and really clingy ... ha ha ....

Anyway ....  off to Seattle I went with Nathan yesterday...  for once I took no pictures...   We were going to the Cleft Palate Clinic to find out what our options are.  Nathan's school speech therapist told me towards the end of last year that he had air escaping when he was talking and she figured this was due to his cleft palate ... at the time we had the appointment made for June, but I had a brain fart and thought it was a couple days into the week, and it was on the Monday - oops.  So we had to reschedule it.   So we did ....  it's been long awaited because after Nathan was born (they discovered the HIGH SOFT CLOSED CLEFT PALATE we were told then or the SUBMUCOUS CLEFT PALATE.... we're told now.  One of the Doctors turned around and looked at me and said "He definitely has a submucous cleft palate" and I'm thinking ...  why else would we be here.

Oh and let me back up a bit...... what is it with every Doctor wanting to solve the mystery of Nathan!?!?!?  One of the Docs took one look at him yesterday and asked me "who diagnosed him with Russell Silver Syndrome?"  I told him, the Genetic Doc in WI and Dr. G confirmed it here ... "Genetically?" he asked.  I said ... "No, clinical diagnosis"  and he's all "Well he doesn't fit the classic RSS guide line" and I'm thinking - is this guy serious??? Then he's like "If I come up with any bright ideas, I'll let so-and-so geneticist know..." and didn't even say HIS geneticist ....  and then "We'll figure it out" .... like he's going to be the genius to suddenly figures it all out ... the mystery of Nathan ... 

SERIOUSLY!?!?!   UGH .......... yet another Doc not wanting to believe his RSS diagnosis ......

Anyway - Nathan first had an ultrasound of his kidneys and bladder done (all was great) ... and then he had appointment with Craniofacial Doc #1 ... DR. C ...  Dr. C was the one who is going to figure out the mystery of Nathan.  He is the division Chief ...   He came in, took a look at Nathan's cleft and humm'd and hawwww'd ...  and then he said that Nathan would have to have surgery for his cleft.  I asked "He'll definitely need surgery?"  He said "yes" ... then I asked how invasive it was and he says "Not invasive at all, we do it all the time, he'll just need a night or two in the hospital at the most...." ... yeah that's not invasive at all ... it's a walk in the park....  he (or his med student) asked me about "have you thought about doing the tube feedings" and I was like... "It's been brought up but I don't see how it would help given the history of the other RSS kids.." ... he's all "how so?" ...  "Well, lets see....  all the kids his age if they have g-tubes or not, everyone is still the same weight ... I don't see how it's beneficial ..."  Yep, that's right.  Not gonna subject my kid to that when I don't see how it helps any of the kids ...I have fought to hard to work with him to eat normally to throw it all away.  Now if he was losing weight and there were other issues, I might consider it, but I don't see any benefit to crossing that bridge... oh and he was talking to his intern and said "You know how palates are straight?  His is crocked, and then there is a bump, and then there's like jagged areas and ..."  Guess his palate isn't very pretty ...   but his dangling heart is one of the prettiest ones around!!

Speech comes in ...  Mrs. L ...  she sits an arm and half length away ...Nathan is GROWLING words at first, and then I get him to say a lot of things by reading The Very Hungry Caterpillar ...  she  eventually says that since he can say "Bubble" and "Purple" and "Go" and "Daddy" that his speech issue is NOT due to his Cleft Palate ... ooooooh-kay?  ...  that's what we've believed all this time.  Since it hasn't really get better other then his favorite words.  I should have explained to her that those are the words we work hard on because it's some of his favorite things....    She umhummed and ah-huh'ed everything ... and then asked a few times when he started speech therapy .... A FEW TIMES ...  so was she not paying attention?  And then she says "I don't hear any evidence of him losing air when he talks" and I'm thinking ... you never got close to him and he wasn't exactly cooperating!  She says "I think he has a disorder called Dyspraxia" .... where the muscles aren't connecting correctly with the brain and he can't seem to form the words properly.  It does take him a long time to master a word, and it takes a long time for him to master one sign (ASL) ...

So I don't know what to think....

So when Doc #2: Dr. P (the Clinic Chief .... so which is a higher position, the Division Chief or the Clinic Chief?) peeks in, she starts blubbering off things like .. "I am pretty sure he has SEVERE VERBAL DYSPRAXIA" and I'm thinking ...  why didn't she tell me she thinks it's severe?  I can't help wonder if this is due to his brain malformations?  So when she leaves, he takes a look ... listens...  shows his intern Nate's beautiful bifid uvula (upside down heart shaped uvula) ...  So this Doc says that surgery is iffy ....  then says, because Nathan had tubes put in his ears, and one has fallen out - the other is still in place ... (he had tubes put in NOT for ear infections but because he has thick fluid build up in his ears and can't hear) ...  he says if he doesn't pass in the ear he has the tube out of, then surgery is going to be necessary and if he does pass, then it probably won't be. 

The other thing that was brought up was an Augmentative/Alternative Communication Screening to see if an alternate form of communication could be beneficial to him ... 

Um........ DUH!

So .... some of the options are of course American Sign Language

but he doesn't have full motion in his hands so signing is hard for him AND he doesn't pick up on signs very well ...   He does do the following:  More, Go, All Done, Thank You, Eat, Please, Play, and we've worked on Bath but he doesn't have that down ...

Another option are Communication Boards

I have seen this implemented in the school system - they are these cards that the kids can point to what they want - or closest to ...  and you can better understand what they are trying to say.   I actually talked to the Special Education person at the school district building today and told her what they said yesterday (about the possible speech diagnosis) and she said she'd talk to the speech therapist at his school and since we already put that (the communication boards) in his IEP, they'd try to start doing that and get us some for home too.  YAY!  Who knows when the evaluation will take place and so ...  I want start using this stuff asap because he is getting increasingly frustrated when he can't get across what he's trying to say.

And in doing research I saw this little device, which looks really interesting ...  instead of having a book of cards, this little device holds them...  it's called a MINImo device...

At the end of yesterday, Nathan had to get his blood drawn ... I almost forgot about it....which I'm sure Nathan would have LOVED ... but right before getting in the elevator to leave, I remembered ...  ha ha ... Poor Nate...    Anyway, we check in and wait and wait and the guy calls us back with a little boy who's gotta be just over a year old...  not much smaller then Nathan (sad) ...  and he takes us back ... tells them to go in one room and us to go into the room directly across the hall.  That little boy was just screaming which was making Nathan extremely anxious, and making him cry.  Once the guy was poking that poor little boy (could tell by the change in screaming he was doing) Nathan was signing every thing he could to let me know HE DID NOT WANT TO BE THERE ANYMORE AND WE COULD GO NOW!!  He was signing GO and ALL DONE and he was doing this ... it's a new one, from watching America's Got Talent to much - it means STOP ... LOL... 

 Top one is with his socks on .. he's doing an X ... bottom one I manged to talk the socks off of him for a moment, had to put them right back on after...

He is so funny.   The guy came in and Nathan was just freaking out at that point...  and the guy FLICKED it into his vein... I'm serious, he just flicked it with his finger!!  Although he didn't really say a word to Nathan, he didn't try to comfort him in any way - infact, when Nathan was screaming from fear and anxiety, they get was laughing....  kinda pissed me off... but I got so distracted with the flicking of the needle....I didn't know if I should be appalled or impressed.... 

In other news, today - Noah's kidney Docs wanted to check out Nathan's kidneys just to be on the safe side...   the ultrasound and blood test were for that...  and I got the call today that everything is A-Ok and they don't foresee needing to see him anytime in the future.  YAY!