Friday, December 7, 2012

Nathan's I.E.P - 2012

 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. 

Toys R Us ... HUGE THUMBS UP!!

On December 1st a friend of mine shared a link with me ....


I want to share that my first job (other than babysitting) was at Toys R Us.  It was one of my favorite experiences - I loved working there.  

So when I saw this.......... I was all, WAY TO GO TRU!!!

I have to say - I'm really impressed!

So my Mom and I shop at TRU for the kids, especially during the holidays of course.   So we were there a few days ago, and I saw the actual printed version of the online ad. 

And as an added bonus - there was this flyer too!!

Amazing!!  WTG TRU!

Pink & Purple Hearing Aids.....

Nathan got his hearing aids on November 15th....   I know I know ....  but better late than never!!

First off - I lost my camera - so I ended up using (or mostly my mom did) my mom's cell phone to take pictures.

We got in there - did another hearing test - to make sure that things were the same .... so ...  after that, we started the process of putting the hearing aids in ...

This is just the hearing aid ear mold in his ear...  

Checking things out ... 

 Becky gave Nathan a kitty because he's so special (and so excited!)

This video is after both hearing aids get placed and he's excited... he keeps saying WOW ...  and then after awhile it becomes too much for him and he starts saying "it's too loud!"  ... so yeah.   But it's great to watch!

Nathan loves his "goodie" bag with all his supplies in there.  

Let me tell you - I have been through this now with TWO of my kids.  There is NOTHING like witnessing your child experience something for the first time.  It's those moments a parent LIVES for.  It makes you beam with pride and want to cry with joy all at the same time. 

This is Nathan's pink goo from when he got his hearing aid ear piece impressions made... 

Here is one of Nathan's hearing aids (they both look the same) ....

YAY for Pink and Purple Hearing Aids!!! 

Tuesday, December 4, 2012

"Therapy Boxes"

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.


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. 

Tuesday, September 18, 2012

Nathan FAILS .....

Recently I blogged about Nathan failing his hearing test during his post cleft palate surgery check-up ....  before jumping on any band wagon - they wanted me to keep the hearing test I had already scheduled for him and see how he did for that one.

Well...  he had that one...... and FAILED.

So the option that had been mentioned during the first failed attempt, of doing the test while he was put under on medication was brought up again but Becky (our Audiologist that sees Noah too) but she didn't really feel the need to do it.  She felt he was responding and she got some slightly better results than the last time.  So ........ she said.......

She just wanted to fit him for hearing aids in both ears.

Yep!  That's right!  Again - just more comes ....  every time I feel like they couldn't POSSIBLY diagnosis him with something else.... they do. 

So he got to get ear molds done.... first the little spongy thing needs to go in so they can pull it out...
 Then the pink goo goes in and surprisingly - he didn't freak out .... 
 After Becky filled up his ear she put the rest of it in his hand so he could play with it.
 Nathan got to pick out colors...... he picked out a clear with a pink glitter, the hot (magenta) pink and the light pink....   cuz...... he ....... loves...... pink.....  he got this mix for both ears.
 and he's getting a purple hearing aid.
 then she did the left side...... 
I totally was caught off guard with this - and hadn't brought my camera - so I had taken these with my Mom's cell phone.

Anyway - we're going back to get the hearing aids on November 15th (long wait!) ...  and she's going to do another test then, too - just to make sure.

So .... that's that........ 

Big Red Safety Box ... take 2


So at the end of last month I had blogged about the BIG RED SAFETY BOX put out by the National Autism Association.   It's a box that you can apply to receive for free if you have an autistic child in your household.

So ....  I thought it sounded interesting, and I applied.

Last week we got a post card in the mailbox (I don't grab mail everyday) ...  saying we had a parcel to pick up at the post office.

I was all....... huh, wonder what it is?

Then Dennis mentioned that it maybe his communication device, and I started thinking crap....  I should go get it now, but it was already to late and I'd have to wait.

Yesterday I went to pick it up ....   I got to the post office, waited in line and when it was my turn, I handed him the card and he brought me this red box.

I was thinking ..........  what the hell???  

No really, that's what I was thinking. 

It was too light to be his device, and I had completely forgotten about the Big Red Safety Box.  So I started to rip it open walking across the parking lot and Calahan was all "why don't you wait until we get home" ....

Cuz I'm more impatient then YOU sometimes..... 

But I didn't say that....

So I open it and I see the door alarms, and I remember.

Inside was ....

There was a folder with papers in it. 

The first one was a list of everything in the box and how to use it.
(we only got one decal, not two ...  but oh well.)

Then there is the Caregiver Checklist Tool....  which is pretty interesting.

  • I have secured my home, I have taught, or am teaching, my child/adult about wandering dangers. 
  • I have enrolled my child/adult in swimming lessons.
  • I have alerted my TRUSTED neighbors.
  • I have alerted my local first responders.
  • I have obtained a wearable ID for my child that contains all of my contact information.
  • I will initiate a "Tag, You're It" system during family gatherings, commotion, transitions.
  • I will monitor any changes in my home's security, especially during times of weather or seasonal transitions. 
  • I have addressed wandering at school, summer camp, and other external settings.
  • I continue to reassess as my child/adult grows and/or learns new ways to possibly exit. 
  • I continue to document actions taken to protect my loved one. 
These are all very interesting and I hadn't thought of all this.

The next thing was a Family Wandering Emergency Plan.

Starts off by listing critical information.....

Then goes into emergency steps....

On the back, there are other things, like .... list the places your child is likely to go in the neighborhood.  Before an emergency happens, assign at least five "Search Angels" who will be willing to drop everything to help search for your child.  It also gives you spots to write down law enforcement numbers, local media, and other notes.

And might I add.... I recently read something that I thought was an amazing suggestion.  Take a picture of your child every day - especially if you are out and about.  That way you have a picture of them - that day - with exactly what clothes they were wearing and all that.  You never know when that picture might come in handy!

Then there is the Autism Elopement Alert Form - Person Specific Information for First Responders
It's a pretty extensive front and back form with all sorts of questions.

And then there is the Sample Wandering-Prevention IEP Letter....

I know that a lot of this stuff, I didn't think about.  So I am going to make copies of the forms, fill them out - and keep the originals in case we move and information needs to change on them. 

There was also the Autism & Safety Wandering Pamphlet ...

Along with all these papers ....  were two door alarms ...
I immediately put one on the door and tested it out.  It didn't scare Nathan at all - but it intrigued him.  He was very interested in the beeping.  Kaedyn didn't like it ...  one bit.  He ran out of the room with his hands over his ears.

There was a large stop sign and four smaller ones - for a visual reminder of STOP ....

There is the Road Tag ID that you register with your child's information and your information and you attach it to their shoes.

And there is also a rubber bracelet ....
One side says "Safety Alert" and the other says "I have Autism" ...

Then there is the ONE (not two) Decals I got... it's a static window cling, and it's written on there in a mirror image - so I used my photography editing program to flip it so it can be read ....

We're already starting to implement some of it........

the large stop sign is on our door....  

the alarm is up...

it only has to be opened this much before going off....

Definitely really helpful!  So thank you very much National Autism Association ..... 

It seems you can still apply for a FREE ONE or you can go to the Big Red Safety Shop and buy them, and other items!