Words- almost 4 years later

I remember when we used to count the number of words Little Bug said.  He started out this blog with no real words- just 10 word approximations at the age of 2.  We began to teach him sign language and then he was able to somehow bridge the gap to speech.  I still have the lists of words- spoken and sign- that we used to maintain.  Each word was (and still is) an amazing gift to enjoy. We have since stopped counting what words he can speak.  That is not to say that he doesn’t surprise us.  Oh no, he surprises us with works like “symbiotic”, “preservation”, “apparently”, “crap” (yes crap- could be worse!), “functionality”, “parasites”, and many more. 

He has also begun to surprise us with words in a new way- reading!  He is reading- and I mean really really reading.  He has at last count over 100 sight words- based off of the flash cards his class has.  He clearly knows his phonics- he constantly correctly sounds out words.  But even more amazing, is his actual reading.   Recently Nick and I took him to our local Children’s Museum for parents’ night out. When we came to pick him up, they were doing circle time, but with the children reading the books.  Little Bug sat through a version of “Green Eggs and Ham” and then decided he was going to read “Brown Bear, Brown Bear, What do you see” out loud to a room full of children and adults.  He did it!  He read the whole thing- showing the pictures and all.

He continues to amaze and surprise us every day.  I hope that feeling never goes away.

Dedication

In our experince, the good of people goes unnoticed. I am so guilty of focusing on a problem to the detriment of providing praise or noticing the positive.

For Little Bug, this week has been an amazing week. He has gotten a lot better about the change in the house due to moving. He has helped us pack some things and was really excited as I cut out sharks made of chalkboard stickers for his room. (A note on that, we are stacking the deck in our favor- we have a Nemo poster, a shark sign, and a shark drawing for his new room. It can't hurt :) )

He has also suddenly blossomed in speech. Two weeks ago, if you had asked me about his language skills, I would have stated that he lacks sponatneous speech without prompting, cannot answer a yes or no question, and also generally uses 1 to 2 words at a time.

Starting on Sunday, yes and no are easy. If you ask him "Do you want goldfish?" He will say "Goldfish... yes" and sign yes. He always repeats a portion of the question- not sure if it is echolalia or just his way of processing- but he is answering.

Yesterday during therapy, he busted out a five word sentence- I WANT MY TURN PLEASE!!! These were accompanied by sign for emphasis and yelling for sheer excitement. His therapist was flabbergasted.

Recently, Nick and I have felt like we are slacking off and not working enough with him as we have been busy getting things ready for the move and also worrying about his lump. Apparently, we have hit our stride for him.

I want to leave you with a positive article I found on yahoo.com:

http://news.yahoo.com/s/afp/20090324/od_afp/thailandchildrenoffbeat


BANGKOK (AFP) – A Thai fireman turned superhero when he dressed up as comic-book character Spider-Man to coax a frightened eight-year-old from a balcony, police said Tuesday.

Teachers at a special needs school in Bangkok alerted authorities on Monday when an autistic pupil, scared of attending his first day at school, sat out on the third-floor ledge and refused to come inside, a police sergeant told AFP.

Despite teachers' efforts to beckon the boy inside, he refused to budge until his mother mentioned her son's love of superheroes, prompting fireman Sonchai Yoosabai to take a novel approach to the problem.

The rescuer dashed back to his fire station and made a quick change into a Spider-Man costume before returning to the boy, he said.

"I told him Spider-Man is here to rescue you, no monsters are going to attack you and I told him to walk slowly towards me as running could be dangerous," Somchai told local television.

The young boy immediately stood up and walked into his rescuer's arms, police said.

Somchai said he keeps the Spider-Man costume and an outfit of Japanese television character Ultraman at the station in order to liven up school fire drills.

Autism- its all around us

Before I get to the meat and potatoes of this post, I wanted to share something I noticed- Autism. It's everywhere. One of my favorite things to watch is the Daily Show with Jon Stewart- I heart some irreverent, politically incorrect humor. I was listening to the show from Tuesday night, when low and behold, Autism came up. More specifically, Dennis Leary was a guest star on the show and was discussing his recent book and the chapter called Autism Schautism which incensed the whole community. He went on to defend himself stating that the paragraph was taken out of context. What he really meant is that there are parents who get their children diagnosed with ASD or ADD or any other number of syndromes so that they can get free help. Right, because that belief is so aptly expressed by calling people with Autism stupid and lazy. The mind reels.

Anyway, lets talk about Little Bug. He had a pretty good night last night. Only 1 meltdown, which is great. He had a school field trip to Odyssey yesterday- think Chuckee Cheese and McDonald's Play Place and bounce houses all rolled into one glorious sensory experience. He had a blast for the most part. He was able to deal for about an hour and half and things slowly went down hill from there. A friend recommended beefing up Little Bug's sensory diet and Nick and I think this is a great way to do it. They have slides that look a lot like the squeeze machine Temple Grandin came up with and another one that has a series of rolling pins. Basically when you slide down, the rolling pins run over your body and apply some good pressure. Little Bug loved these and had the route from the bottom of the slide to these slides mapped in his little brain after one trip.

As Nick and I journey down this path together, we realize more and more about Little Bug every day. We realize that his limit for commotion or newness is about 2 hours. After that, all bets are off. This is something that we are trying to get Nick's parents to understand, but there has been some resistance. For Thanksgiving, we told them that because there are going to be people there that Little Bug doesn't see often, we will come for three hours and then leave. We also created the boundary that if Little Bug has a meltdown, we would leave as there isn't a safe place for him there and you can't really escape people. So of course, they called and told us that dinner would be at 2:00 PM but to come down in the morning. *exasperated head shake*

Anyway, Little Bug has quite a few new signs-
Rainbow
Carrot
Pear
Grapes
Fruit
Lettuce
White

and five new words-
Ca-cat
No- nose
Juice
Dorie
Daddee

All said, he has 53 spoken words and 101 signs! This is amazing!!!!! Finally, Little Bug will begin OT today and Nick is going to push our OT L about the self injury and routines as we don't believe these have anything to do with speech, but his need for certain kinds of sensory input. More on that later.

Ee Ee Yumpy Shark!

Little Bug said his first sentence last night since his regression in both sign and speech. His last sentence was at 11 months- I DID IT! He has lost a lot of language since then- he tested at 9 months of development for both receptive and expressive speech. But, he has made a ton of progress.

One thing that has helped his progress is his obsessions. Although he doesn't have a lot of language, he talks about them constantly. The first thing out of his mouth in the morning and the last thing before he goes to sleep is SHARKS! He also loves fish and trains. They work for us as we can make them incentives. So much so that we have thought of making him a shirt that says- WILL WORK FOR FISH. Last night, we were watching a Discovery Channel special about the sharks off of South Africa that jump during predations against fur seals. The shark got the seal and Little Bug yelled- Ee ee Yummpy Shark!!!!! Which, when translated, means Eat, eat jumping shark! He signed while saying it.

Another development we had yesterday was colors. We know he knows his colors- he can match them, etc. but getting him to name them or point to a specific color has never happened due to his language delay. He was 4 for 5 last night on matching! He also demonstrated quite a few new signs:

Red
Green
Orange
Walk
Shark

New Words:
Yump- Jump
Ru- Red

FISH!

One of our most recent struggles has been repetitious use of words out of context. One example is that Little Bug now says- buh bye Fish!- to everyone. More and more objects are becoming FISH!

While Little Bug is very proud of his words, he is also very adamant that what he is saying accurate- even when corrected. Case in point, the other night, I ran a bath for him and then put him in it. He looks at me and smiles, "Lice, da, Lice!" I am most certain that he meant NICE, but there was no convincing him the LICE was not the same as NICE- nice is also stated as MICE in our house.

Needless to say this makes every day an adventure that is sometimes filled with discussions.
A typical dialogue:

Little Bug points to a waiter- FISH
Daddy Blake- No, he is a person.
Little Bug- FISH!
Daddy Blake- No, PERSON
Little Bug- adamantly and louder- FISH! FISH! FISH!
Daddy Blake- turns red and wants to disappear- Bug, he is a PERSON. NO FISH!

We are unsure of how to help him with this. Certainly, more signs will help. As his vocabulary grows, so will his ability to express his knowledge. I truly believe that he knows the difference between a fish and a person, and yet, without the right words, how does he demonstrate this?

Does the fact that he can't say person mean he is behind? No, it means we have to find a way to get that information out.

On Monday, we have a cognitive evaluation- basically, what's going on inside his little noggin. I am very nervous about this. This field is *not* level. I am unsure how you would accurately test some one's cognitive ability when they have only 40 words- between sign and speech. At this point in time, we can't really tell what he truly understands when spoken to.

All I can say about Monday is this: I will be his advocate and try to represent his cognitive abilities the best I can. I will voice my concerns regarding the test. I will also allow him to have his say... whatever that will be.

For now, FISH!