Parent Teacher Conferences

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DB & I had parent teacher conferences today for both Nathan and Kaedyn. Even though Nathan hasn't been in school much this year (boo) ... but he's doing really well. Even though he's not talking - he is reading at a 1st Grade Level ... his Speech Therapist told us that she was observing him in class (reg class, not his inclusion classroom) and his teacher (Mrs. M) was doing a lecture on something. After there was a comprehension worksheet and he did it ALL BY HIMSELF and got them ALL RIGHT! Go Nate! And he's starting to navigate the school on his own. Makes me nervous about him being alone doing things because he is still so small but I'm assured that he is never truly alone. Mrs. E follows him at a distance and his classmates walk him to the Inclusion Room... lol... Kaedyn is doing AMAZING. He needs to work on rhyming and writing his name, and that's all. She commented on how much of a math wiz he is. She also commented on how he gets really emotional and anxious around new people and new situations ... and how he closes down. So .... he's doing REALLY REALLY good but still gets anxious and has two things we need to improve on.  We are really proud

Nova Chat 7 Goes to School ...

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First off ... ignore my laundry in the background.   Secondly - this is Nathan checking out his Personal section of his NC7 ...   we are avoiding the buttons with - say - address, phone number, etc...   that is why I have some covered up and am directing him around them.  Otherwise he would have to play them in order.  Ha ha....



Today when I took him to school, he did NOT want to go .....  this is him saying "I'M SICK!!!!!"

He's telling me "MY TUMMY HURTS" ... ha ha... he's faking.

This was outside his room today ... had to take a picture of it......

We have a routine.  We drive him to school (if he took the bus he would be on it for probably OVER AN HOUR - at least 45 minutes - and for him, that would NOT be okay - he would spend the whole time crying.)   He eats breakfast at school.  So we go in his room, drop off his stuff (he's usually unwilling and sad if not crying) ....  we take his breakfast back to his room because it's quiet in there there... there isn't that many people and he can focus on eating.  He might be extremely pokey puppy about it all - but he eats.

Here he is sporting his noise cancelling headphones at school.  We need some at home - the definitely help him relax.

Later that day - we went to pick up Nathan from school!  He had taken his NC7 with him and we heard the speech therapist was THRILLED and wanted to know how to get it for the other kids.  LOL...  it was a long long process....

And I say - even though insurance hasn't agreed to pay for it - and we're "renting" it .. and trying to raise money to buy it.....  I say... now that we have it...   they are going to have to come knocking on my door and pry it from my cold dead hands (and Nate's) to get it back....

When we left school, Nathan HAD to carry his NC7 ...  course, he's busy shooting me with his M&M tube that Kaedyn picked up for him as a treat.

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. 

"Therapy Boxes"

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I know I have some updating to do over here ... I'm hoping to get it done tomorrow.   (Or today as it's like, 3am ...) ....

BUT .......

I needed to share this right away.   Before I forget!

The other night we were watching the 11 o'clock news.  One of the leading stories was about how in a local school (Tacoma) there was a school ....   The part that got me was when the interview with the child's mother who broke the story.  He - somehow - got back by this PADDED ROOM where there was a kid in there crying and crying and the little boy felt so bad - he wanted to help -but couldn't.  Anyway - apparently this school has this padded room where the lock up students who are having emotional or behavioral issues.  There is a mother on there - interviewed - who's child is one of the ones who goes in there.  She's fully in support of this room saying people don't understand.... etc...  her so can get so out of control that he's a danger to himself and others.

READ AND SEE VIDEO HERE

So .. as a mother of children with unique needs...   I find it so disturbing.   I guess I can understand - to a point.  But ... I think it's torture.  There are other ways to handle these things.   In my opinion - this is so wrong.  This is a lazy way of dealing with this.  It's uneducated!  In a place of education - it's completely drips of being uneducated about how to positively help these kids.

What kills me the MOST MOST MOST is that there are 9 kids in this inclusion room and ALL NINE SETS OF PARENTS signed permission slips for their children to be locked up in this room! 

There is no way that I would EVER sign a permission slip allowing educators to be able to lock my child up in a room.

They say that kids are locked up there from anywhere of 15 minutes to a couple hours.  And if that little boy found that room and no adult was around - WHAT THE HELL.  What if something happened??? What if that child that was locked up needed to use the bathroom.  What if something happened and he hurt himself or needed help or whatever.  It BLOWS MY MIND.

The district responded to the outcry from parents after it went viral ...   this is a video from the day after the story broke. 



Then the very next night, this appeared on Nightline.   And it just disturbed me even worse!!!


 This is outrageous.  That's my thoughts on it.   I would never do that to my child. 

Notes on Nathan

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I thought it was interesting, and I wanted to document these someplace before filing these away ....

There are some notes, made by myself and others at his IEP meeting and his meeting and when we met at his new school ...  to discuss his transition to kindergarten. 

Which - btw - went really well - yet I'm really nervous on how he is going to react, and how he is going to do.  He only liked school when he went to one particular school, this past year even, when he went with Kaedyn - he would cry and cry going to school.  The teachers assured me that he was doing well and wasn't crying all day - and come to find out - at the beginning of the year, he was crying all day.   That made me really sad.  He really doesn't like changes to his environment.   It's so hard to put your child who is crying on a bus when he's begging to stay home. 

It hurts.

Honestly don't know how much I'll be able to take if he doesn't like it.

So my hope is that because I'm so nervous about it - that he'll love this school and his team and he'll enjoy going to school.  

Anyway - back to the point of this blog....

They did some occupational therapy testing on him this year.  He got it through Birth to Three in Wisconsin, however; it was the first one he "graduated" from.   So these are the age equivalents he was ....  at the time of the testing he was 59 months (this was a couple months ago) ... in Stationary - which is balance on one foot, standing and doing arm positions ... he tested at a 46 month level, and he needs to work on standing on one foot, walking on his tip toes, doing sit ups.   Locomotion, he was at a 34 month level - this is walking, jumping, jumping down, walking in directions ...  he needs to work on feet on a line, running speed, hopping on one foot.....   Object Manipulation he was at a 41 month level and this is mostly ball manipulation and other object manipulation. Grasping he was at a 34 month level - he needs to work on buttons and snaps, and that sort of thing. Visual-Motor Integration he was at a 46 month level ... this is cutting and copying shapes and such, which he needs to work on. 

So ...  on his Preschool Progress Report that I got a copy of has the following notes... 
* likes to play by himself
* has strong emotions but is able to calm down usually when comforted
* not sure how high he can count as it is hard to hear, makes counting like "noises" up to 20
* Nathan's preacademic skills are often hard to hear in the classroom, most of these skills were done receptively
* Nathan's still needs someone to remind him to use the bathroom
* Nathan's speech is severely delayed.  He can produce 3-5 word phrases/sentences, but they are often unintelligible unless the listener is very familiar with him.  He is using/learning vocab, understans and follows directions if willing, loves to be read to.

And .......... that .... is what was said.....

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

The Last Month with Noah

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Everything has been going well with Noah, other then the fact that his hearing has been getting worse. It seems like everyday it's a constant chorus of "what?" "huh?" and blank stares as if he's trying to hear you but just can't make anything out of it.  We noticed that he has started to read lips, if you make him look at you, and repeat yourself....  he'll get it.

It's hard to watch him struggle like that.  He is getting his hearing checked again soon, but it doesn't seem like it's soon enough.

He hasn't been so sick, that he has had to be hospitalized, since 2007 when he almost died.  It's silly to go back, because he's fine now, but I will never forget watching him so sick, 103-104 temp, him throwing up, just being so sick he couldn't move much, him complaining about pain in his right side /... knowing something was that wrong and not having the doctors hear me, until I couldn't take it anymore, I was desperate, so when I went in for my DR appt 2 hours away I took him with ... and finally got someone to listen to me.  Thank goodness, or he'd likely to not be here.  They admitted him, ran a gambit of tests, his kidney's were failing and they were throwing a ton of blood out into his urine.  I remember standing at the movie cabinet next to the nurses station, they were passing around his urine sample around, had no idea I was his mom, they were talking about how it looked like apricot preserves.  Yep - it was that color ....

 They saved him.   One of the hardest days of my life was to leave my child in his hospital room, and then go down one floor to give birth to another.  The day Nathan was born, Noah was released from the hospital, looking weak and tired, but better.

That was the last time he was in the hospital.

Until the end of last month.  He was running a 103-104 degree temp.... and he was so sick.  Took him in and his blood tests showed an abnormal white blood cell count, and his urine looked like this .... mind you, there is a blue stick in there that matches the color of the cover.......

A lot of blood ....... A LOT ... not as much as the last time he was in the hospital... but enough to really concern me.

The DR ended up sending us home for the night.  He was concerned about him possibly having appendicitis, or something else going on.  So he wanted him on a liquid diet until the following day.  He wanted him to come back to the ER at 11am so that they could continue assessment of appendicitis.  If his blood work wasn't better, if he wasn't starving, etc, then we would run the CT scan or whatever it was he wanted to do to diagnosis it.

So we went back the next day ....

 He was more miserable on the 26th when we went back in, then he was the night before.  His fever was not registering on their monitors all day.  Kept reading normal or low grade ... and then, I pointed out to one of the nurses that he was burning the hell up, made him TOUCH Noah.. he did it the normal way, and although it said 101 ... I told him I didn't believe it, it was way higher then that.  I said "I hate to suggest it, but will you do it rectal because I know that's the most accurate way to get a temp" so he humored me.  Want to know what his temp was?!?  104.8!  Yeah!   His pulse was racing, his blood pressure was high ... they put leads on him...  to keep better track of his heart rate.... and Noah was so hungry when we go there, that they ordered him a lunch tray and he got this huge cookie on the tray, and he didn't even get to eat half of it before he said "Mom, I think I'm gonna throw up" I frantically looked through the cupboards and such for something for him to throw up in and all I could find was a bedpan type thing, so I gave him that and........ he lost it. Not to mention, they had to stick him 5 times to get blood from him the first time, three times for the IV, another time for blood draw, and then they realized they hadn't gotten ENOUGH blood so they had to come back and poke him again.  TEN TIMES he got poked that night... and a lot of those were digging pokes trying to find a vein.  He did okay for the first couple, then he'd get really anxious between but whenever they were doing the actual poking or what not, he was brave and not crying.  He was BRAVE .. and he was AMAZING.........  (pick below, trying to show the leads on his chest, and you can sorta see the IV in his left arm on the right side of the pic ...

Good news was - his blood tests were better and his urine looked clearer.  YAY ... but something was going on.  His kidneys were still spilling out a "large" amount of blood and his Kidney Docs wanted him to spend the night in the hospital for observation.  So after 9 hours in the ER we got transferred by ambulance to Seattle Childrens.  (Noah in the ambulance)

These were taken on the ride over.  Noah - who is always trying to smile for pictures, even when he's really sick.... 

 Here he is asleep with Max ... and his blanket....

 On the way over on the ambulance ...  they got the news that he had tested positive for Influenza A (which they took the tests literally right before he was put on the ambulance bed and we were put in the ambulance)  So from then on, it was mask time.....

 He was taken up to his room at 2am and he didn't fall asleep until 4am, I didn't fall asleep until 5 ... and we were up around 8...  he had been throwing up everytime they tried to get him something to eat....but by Sunday morning, he seemed to be holding stuff down. 

So we ended up going home on Sunday.  His kidneys had cleared up and it seemed that the flu was attacking his kidneys.  I think it's going to be something we deal with everytime he gets really sick.  He ended up being out of school the whole week due to his fever coming and going all week, and then ...  we all got a stomach bug!  Seriously!?!?  At first we thought it was us getting the flu, until Noah got it too.. then we knew it was something totally different.  And after a long week of hit, misses, and a car accident, he was out that whole week too.

Now he's doing good.  Even his hearing has improved again right now.    Because we moved (while he was sick) ... he had to start at a new school and he is doing fantastic there I think.

 His new Mascot is the Killer Whale... 

He had a follow up with endo and everything is looking good, and he saw Genetics ... so that he can be followed by them. 

When ever I sit and think about everything he's been through, I am always amazed and always go back to the fact that I was told before he was even born that he wouldn't live.  Yeah he has some ups and downs.... but he is doing amazingly well for the hand he was dealt.

The Last Month with Nathan

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So a lot of stuff has been going on with the boy.  So I'm going to update.

So - we were living in a bad situation with some "friends" ... our whole family was stressed out, we were basically only sleeping there until we found a place, and we were looking.  Then one night, things escalated and we didn't go back.  We ended up staying at my Mom & Step-Dad's...  and it was amazing to see the kids moods just lift :)

But sickness then ensued.  Nathan ended up acting like he wasn't feeling well.  (here he is sleeping and cuddling his Mickey)

I noticed that his eyes were really goopy ....  so ended up waiting until the clinic opened on Monday, and low and behold, the Monday we went to go in, was a holiday ... so it wasn't open.  So we ended up going into the ER...

 Having a blast playing on the iPad ...

 See how icky his poor little eyes were....

He also had an appointment with Neurology to discuss his migraines which he had been having again, it seemed.  (Hiding from the dark a lot, needing to cuddle/kangaroo, a lot of sleeping....) ...  and when we were explaining things to him, the DR said that with Nathan's medical history he was worried about seizures ... so he wanted Nathan's eyes checked, and an EEG done.  I had never seen him have a seizure, but I also knew that you can not know someone is having seizures.

Two nights before the scheduled EEG I was sleeping with Nathan on my Mom's love seat.  Something weird happened and I actually think he had a seizure that night, I really do think it was.  I was about to record it, when it stopped.  It is the one and only time that I know of, that it's happened, but he wakes up in the middle of the night all the time - upset - and we don't know why.  So who knows.  

What happened?

Well...  he was sleeping, and he let out this whine, and it didn't stop.  Then he would build that whine into a cry and eventually he'd scream, stiffen up completely - like a complete full body stretch, arms and legs outstretched and completely stiff.  Then the whole process would start over.  Whine, build up to a cry, scream, stiff, whine, build up to a cry, scream, stiff...... I grabbed him and pulled him over on me completely unsure of what o do, he wasn't responding to me, he wasn't answering me or even looking at me like he normally does.  So I had him laying on me, back against my chest and belly and I realized while he was doing the whine building up to the cry, he was also trembling.  This repetitive process went on for about 3 minutes before it stopped.  Then he turned around, looked up at me like "what am I doing on you mom?"  He pointed at his pillow, I put him over there, tucked him in ... and he went right back to sleep.

So I called the Neuro the following day, and told the EEG people when he had it done. 

 Nathan is the "Frog" and the EEG lab is in the frog clinic ...

 Nathan playing games on the waiting room computer ....

 Getting the electrodes connected

 Wrapping up his head......

All connected ...

When it came time for the strobe lights, Nathan just laughed!  He thought it was the coolest thing.  He just laughed! Couldn't get him to fall asleep because he falls asleep with his hands behind his head, and he couldn't do that.  So he'd just get pissed off. 

The hour long EEG revealed nothing, so they want to do a 24 hour one, which is May 2nd.   I am hoping that if he is having seizures, that they pick up on it then. 

He had a check up with Endocrine to check to see how the HGH is doing and she was REALLY HAPPY with his growth.  So that's good news.  We see him going in spurts right now where he is really hungry and eats really well, and then when he's not so hungry and just doesn't want to eat.  Lately though, he has been eating like a champ and it's been so nice to see!!

His Autism (PDD) is doing okay.  He's still got major sensory stuff going on but he is doing so well in school.  He absolutely LOVES it...  it's a complete 180 from the school he was in before.  The preschool he was in before was very dull, not colorful at all, and just... he didn't enjoy it.  I donno what was going on there, but he didn't like it, and neither Dennis nor I did either.  Everytime he would go he'd cry.  We recently found out that the teacher is no longer working there either, not sure why, but she's not. This new preschool is amazing, so colorful.  Very welcoming, which is huge.  And his teacher is great.  Everytime we tell him it's a school day, he starts jumping up and down for joy.  We tell him he gets to ride the bus and he's excited.  HE LOVES SCHOOL.  Loves it!!

Then he had an appointment with Genetics too.  He saw DR. Glass.  So we would finally have answers on if his brain issues... and if it was Dandy Walker or Jouberts Syndrome, or something completely different.  We were going to finally find out what was going on with his last MRI.  He definitely doesn't have Jouberts Syndrome, I guess.  And Dandy Walker is questionable, his words were .... "It can be called at Dandy Walker Variant however it is all caused by the Russell Silver Syndrome I believe..." and then said he's rather call it some long doctor word.  So he doesn't really have Dandy Walker either, he has an under-developed vermis (in his cerebellum) or missing vermis ... and we also found out he has something called (we think this is what he said) ... Polymicrogyria ...  he said that, in a normal brain (which we all know) there is one fold, separating the left and right sides of the brain.  In the case of Nathan, along with the missing vermis, he also has a bunch of folds on the front of his brain.  Dr. Glass compared it to looking like a "bunch of grapes" ...

This is a Normal Brain

This is a Brain with Polymicrogyria

The last thing I wanted to talk about is that Dr. Glass said he conferred with Dr. M in WI (Nathan's Genetics Doc there) and completely agrees with her assessment of Russell Silver Syndrome.  Everything going on with Nathan, he said, can be linked back to the RSS. 

We are connected with a great group called the Magic Foundation, and they are having a conference this summer (which they do every summer) and we'd love to go.   But we just can't afford it.  I am debating tying to do some fundraising so that four of us could go, but I don't know if I can do it.  I really want to but...  I donno.......  UGH...

And to end with.... a few photos of Nathan "folding over" on St. Patricks Day...