Nathan FAILS .....

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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

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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! 

Famous People with ADHD

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Famous People with ADHD

ADHD children are often highly gifted in some way or another. 

Here are some ADHD personalities who succeeded despite their ADHD.

Bill Cosby
Jim Carey
Harry Belafonte
Cher
Kirk Douglas
Ann Bancroft
Dustin Hoffman
Robin Williams (big surprise, right?)
Suzanne Somers
George Burns
Steve McQueen
Tracey Gold
George C. Scott
Sylvester Stallone
Whoopi Goldberg
Henry Winkler
Will Smith
Lindsay Wagner
Paris Hilton
James Stewart
Tom Smothers
Danny Glover
Pablo Picasso
Vincent Van Gogh
Ansel Adams
Bruce Jenner
Pete Rose
Magic Johnson
Jackie Stewart
Babe Ruth
Michael Jordan
Nolan Ryan
Jason Kidd
Greg Louganis
Leonardo Da Vinci
Orville & Wilber Wright
Benjamin Franklin
Thomas Edison
William Wrigley
Alexander Graham Bell
Sir Issac Newton
Galileo
Albert Einstein
Anwar Sadat
Abraham Lincoln
John F. Kennedy (father and son both)
Winston Churchill
Prince Charles
Dwight Eisenhauer
Robert F. Kennedy
Woodrow Wilson
Nelson Rockafeller
Walt Disney
FW Woolworth
William Randolph Hearst
Terry Bradshaw
Scott Eyre
Justin Gatlin
Cammi Granato
Jason Kidd
Michael Phelps
Pete Rose
Charlotte and Emily Bronte
Samuel Clemens
Emily Dickenson
Ralph Waldo Emerson
Virginia Woolf
William Butler Yeats
Wolfgang Amadeus Mozart
Andrew Carnegie
Malcolm Forbes
Henry Ford
David Neeleman
Ty Pennington
Elvis Presley 
Evil and Robbie Knievel
Justin Timberlake

 Found at: http://www.squidoo.com/adhd-news

Big Red Saftey Box

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 The National Autism Association is granting some Big Red Safety Boxes away to families with autistic children.

Limit: one box per family.  Our grant inventory is limited to 2,000 boxes. In order to provide these resources to as many families as possible, only one (1) safety box request per household will be processed. If you have more than one child with autism and need additional ID’s, wristbands, etc., they can be purchased separately in our Big Red Safety Shop.  All printed materials can be downloaded for free at http://awaare.org.

NAA’s Big Red Safety Boxes have a retail value of $53.00.  They include extensive resources for caregivers to help prevent and respond to wandering incidents.  The contents of the box are as follows:

1) Educational materials and tools:

A caregiver checklist
A Family Wandering Emergency Plan
A first-responder profile form
A wandering-prevention brochure
A sample IEP Letter

2) Two (2) Door/Window Alarms with batteries (Please be aware that Door Alarm packaging contains three batteries small enough to swallow. Use extra caution when opening the packaging, and keep the batteries well out of the reach of children.)

3) One (1) RoadID Personalized, Engraved Shoe ID Tag*

4) Five (5) Laminated Adhesive Stop Sign Visual Prompts for doors and windows

5) Two (2) Safety Alert Window Clings for car or home windows

6) One (1) Red Safety Alert Wristband

*You will receive instructions to submit a custom personalization order online at roadid.com. Your tag will be quickly engraved with your emergency information and mailed to you at no charge.

 http://nationalautismassociation.org/big-red-safety-boxes-now-available/

There is more to read on the website before submitting your applications....   but I wanted to be sure to pass it along.  

Nathan's Hearing Test ....

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 Nathan recently had a hearing test.   Well, he had a follow up with the doctor who did his cleft palate surgery, uvula repair & put tubes back in his ears.   Everything looked great.  At the end he says, would you guys mind waiting around and doing a hearing test just so we can see where it's at.  Sure....

Cuz, he's going to pass!  His palate has been repaired, he's got new tubes in his ears so there should be no reason why his hearing should be bad!!

Except he has a brother who's got hearing loss in one ear ...

So what...

Nathan will pass, even though.... he's ....... never....... passed.

So we get called back, pulled into the little room ....  she asks me if I'll go sit with Nathan.  In my head I'm screaming NO I WANNA SEE ... but of course I say sure... cuz he's my little man!

So we go into the sound proof room with an assistant ...  and Nathan is very engaged, doing what he's suppose to - looking this way or that... depending on the sound.

From the other side of the glass I can see the Audiologist and her face .... was full of concern.

And I knew....  he wasn't passing.

You come to a point where you are sure - absolutely sure - they cannot diagnosis a child with ANYTHING else ...  and then, they do ..... and you realize, the diagnosis mudslide will never stop.

Ever.

So we get out in the little room and she asks me "Did he pass his newborn screening?"  No...  "Has he ever passed a test?"   No....  "Has he done the test where they put the kids to sleep and..."  no... "Well they might want to do that."

Okay.....  I can accept this.   I've been through it before. 

 Nathan has hearing loss in both ears.  You want it to be above the gray area... you can see he is completely in the gray area.  The red circles is his right ear, the blue x's are his left ear and the red arrows are the bone conduction in his right ear. 

 I don't know if I should be thankful that his hearing isn't as BAD as Noah's ... Noah's hearing loss is a little deeper...  but ... he only has it in one ear.  Nathan has it in both - so does that mean it's worse?   I don't know....

He has another hearing test in mid-September... so we'll see.

Here is Noah's latest hearing test - to compare. His is severe in his left ear (under the gray) ...  and his right, although he has some loss, he's pretty normal.  And they fall in different directions - one hears better with higher pitched and one hears better with lower pitched.....

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.....

Dysgraphia ...

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Shortly after moving from WI to WA - we put Calahan through some testing through the school ...  for learning disabilities.... 

Results came back that he has Dysgraphia ....

I did some inital research on it - but it wasn't until I really started looking into Dyslexia that I saw that Dysgraphia is under the umbrella of Dyslexia ....  and ADHD is under the umbrella too?? 

So I knew that Dysgraphia meant that he had an extremely hard time getting things from his brain out through his hand.....  I knew if he verbalized answers, it was better...   He is FAILING all his classes... and his IEP is not being followed... and after bringing it up - continues to not be followed....

DESCRIPTION OF DYSGRAPHIA

‘Dysgraphia ( agraphia) is a deficiency in the ability to write, regardless of the ability to read, not due to intellectual impairment.

People with dysgraphia usually have problems writing on some level, and often lack other fine motor skills, finding tasks such as tying shoes difficult. It often does not affect all fine motor skills.

They can also lack basic spelling skills (for example, having difficulties with the letters p, q, b, and d), and often will write the wrong word when trying to formulate thoughts (on paper).

In childhood, the disorder generally emerges when the child is first introduced to writing. The child may make inappropriately sized and spaced letters, or write wrong or misspelled words despite thorough instruction.

Children with the disorder may have other learning disabilities, but they usually have no social or other academic problems.’

Quoted from Wikepedia

SYMPTOMS OF DYSGRAPHIA

1. Students may exhibit strong verbal but particularly poor writing skills.

2. Random (or non-existent) punctuation. Spelling errors (sometimes same word spelled differently); reversals; phonic approximations; syllable omissions; errors in common suffixes. Clumsiness and disordering of syntax; an impression of illiteracy. Misinterpretation of questions and questionnaire items. Disordered numbering and written number reversals.

3. Generally illegible writing (despite appropriate time and attention given the task).

4. Inconsistencies : mixtures of print and cursive, upper and lower case, or irregular sizes, shapes, or slant of letters.

5. Unfinished words or letters, omitted words.

6. Inconsistent position on page with respect to lines and margins and inconsistent spaces between words and letters.

7. Cramped or unusual grip, especially holding the writing instrument very close to the paper, or holding thumb over two fingers and writing from the wrist.

8. Talking to self while writing, or carefully watching the hand that is writing.

9. Slow or labored copying or writing - even if it is neat and legible.

Quoted from: www.as.wvu.edu

Suggested Modifications for the Dysgraphic Student

1. Allow reduced standards for acceptable writing.
2. When possible reduce amount of written work.
3. Allow student to type or tape assignments.
4. Do not have student recopy illegible material. It will only get worse.
5. If unable to read student's answers ask them to give it orally and give partial or full credit if they are correct.
6. Do not take off points for letter and number reversals but point them out and have student correct if appropriate.
7. When student has, multiple homework assignments allow them to do what they can on their own and dictate the rest to an older sibling or parent.
8. Have the student use graph paper for written work.
9. Do not have another student check the dysgraphic student's paper.

I got those from HERE.... 

If I wasn't already concerned (which I was) ....  even more so now.   This is an example of Calahan's handwriting (at age 16) ....  from today .... the green is Calahan and the blue is Noah (who's dyslexic and 10, he was just diagnosed last year)

Wordless Wednesday: Oral Satisfaction

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