Maui: Plane Ride, Water Slide, & Work

The plane ride to Hawaii last Friday was awesome! John and Katie were calm, excited, and very well behaved!

John sat by the window next to Bill and Katie sat by the opposite window by me. Using a video iPod, portable DVD player, books, headphones, crayons, and activity pages, the children were kept busy and happy.

John kept saying "riding in airplane". He told us he was "happ-n" (happy) and didn't have a single meltdown. Katie was talkative and enjoyed every moment, taking it all in. Traveling was pleasant and everyone stayed in good spirits.

Once we arrived in Maui, there was Starbucks in the airport and all enjoyed some cake. Katie, my dad, Steve, SeAnna and myself went to check in, while Bill, John, and Grammy went to Costco and then back to the airport to pick up Erin. John had fun shopping at the store and told Grammy she had to "pay". As we use the stuff from Costco, he tells us he bought it at the store.

We've been here for almost 3 days now and everyone's had a blast! The first morning, John and Katie went into the ocean with their clothes on. After changing into bathing suits, they went on the huge twisting water slide over and over. John asks to go in the spa a lot, so we have termed the kiddie pool as a "big spa", which satisfies John. He loves the independence we give him in the "big spa". Bill and I can sit on the edge and allow both kids to roam around the kiddie pool, which is so shallow both kids can touch. There is a waterfall on one side of it, which makes it fun, and a stair around the other part. John wears a lifevest and swims around, playing with all the other kids' toys. Its a "Free for all" as far as the pool toys that everybody brings. We have two floatation animals and our kids usually play with some other kids sand toys and they ride our water animals!

We've met another family who have an 18 month old son who is in early intervention as well, due to not crawling by 12 months old. They love the occupational therapy they receive through Regional Center and will not be needing it anymore, now that he is walking.

Every morning, John and I do our "work" and Katie and Grammy do her work. John is building 'bridges' with blocks, working on opposites, practicing his pronounciation with flash cards, playing with puzzles, finding hidden objects in play dough, matching photos, and reading books. Katie is practicing her writing -lowercase letters--, addition, reading comprehension, opposite puzzles, and trying to master a more advanced jigsaw puzzle.

All in all, vacation is nice and relaxing. Everybody is having a blast!

Neurofeedback Study

Through Neurofeedback Centers for Success, we have arranged a barter system. My family trains for free and I create promotional videos for them. Besides John, my Granny, husband, daughter, and myself will begin brain training (and possibly my dad). Each person will be dealing with different areas, but for the most part, the goal is to become more calm, alert, and focused. Granny has restless legs syndrome and is hoping that she can go off medication once her brain learns to 'self regulate'. Every 10 sessions for people over the age of 6, they administer a test, which monitors how your brain performs under low and high demand, how it reacts/recovers when a mistake is made, and tracks progress throughout brain training. So, we are doing our own little research study for anyone interested. Every once in awhile I will report back on this site on how each person reacts and feels about "brain training".

So far, John's in home teachers have noticed better posture, the psychitrist mentioned to my mom that John seems calm while in class, he seems to fall asleep better, he is socializing with Katie better, rarely bites his shirt anymore, no self stimulating behavior, and his vocabulary has increased dramatically. Things that haven't changed: clumsiness while walking, sustaining sleep thorughout the night (off/on), still in constant motion, still has limited eye contact, resists socializing with peers, and attention span is still pretty short. John has had 35 sessions. There were about 10-15 sessions in the middle that were unproductive, due to a switch in "protocals", causing agitation and pulling off the wires. The last week of sessions have been amazing and probably John's best sessions. He has remained calm, fairly still, and rarely pulls the wires off. They were able to move him into the 'big room', as opposed to the private room since he doesn't make as much noise as he used to (he'd sing, talk, babble, etc) I would say that since John is sooo young and doesn't understand what he's doing, as well as having "busy hands", pulling off his wires, many sessions were unproductive. I would say, he's more likely at 20 good sessions, than 35.

Tonight Bill had his first session and felt that it did make him feel more relaxed, less tense, and more attentive. He was skeptical going into it (and still is), but admitted it did make him feel better. My dad went once and felt like he experienced no change in how he felt, nor did it make him sleep better that night. He also admits he's not that self aware, but didn't feel like it did anything.

Granny had her first test after completing 10 sessions and her scores went up dramatically. It showed her alertness and reaction time have improved. Retless legs still bothering her...

I will continue to post updates on this site regarding our personal testimonials.

Here is the 60 second promo I edited for them. You can see a higher quality video, by going directly to You Tube, clicking on the video, and clicking "play in high quality". My portfolio on YouTube is HERE.

Traveling with an autistic child

I came across some articles that touch upon travel with an autistic child. I thought someone might be interested. Some of this stuff does not apply to John and other stuff is right on. It is worth the read.

This article is from "smarter travel".

This one is from USA today.

Here is one from a parent on epinions.com

Here is the tsa: travelers with disabilities website with information

Here is one resource that has a ton of tips. (AutismTravel.org)

I'll end with a section from the last website I listed:

Preparing an autistic child for vacation should begin with an understanding with their core problem areas. If sensory issues are a problem, then you need to address those. For example, an amusement park visit may require headphones/earplugs for a child with audio difficulties. If you child is on the diet, then reserve a room with a refrigerator. That is simple, right?

But what about preparing your child in other ways? Perhaps a social story discussing issues that come up on the ride -- like hitting your sister or singing the Mickey Mouse theme song 91 times. Rent a video of your destination for your child to watch. Or a library book on the destination. If they use visual schedules, then prepare a visual schedule for the week of vacation.

Also think through the location. The beach is a family favorite but could be an issue for any child. The sound of the waves, feel of sand and wind, taste of the water, bright sun -- all together equals sensory overload. Maybe you put sand in a bucket and dip their feet in? Or you can buy a wave CD and play it at night for a few weeks before you leave. And if worse comes to worse, you divide and conquer. One parent takes the sibs to the beach and the other to the pool. Or you all visit the pool.

"Out of Sorts" days

John has had a day where he has just been "out of sorts" since he woke up.

Days like this include clingy behavior, accompanied by crankiness, and "oh no" quite a few times. Everything seems to set him off. He doesn't listen well and doesn't seem interested in anything. He'll ask for one thing or another and then be upset once it's given to him. He doesn't eat well and sleep doesn't seem to change his mood. "Good" moments are less frequent throughout days like this, but are present in between the whines and cries. Most of the day, he's hanging on my back, if I try to sit on the floor with him, climbing on my lap if I'm sitting in a chair, or putting his hands under my armpits and pinching, which I move and it makes him mad and irritated.

On days like this, he cries, not like a tantrum, but like he's sick or just doesn't feel well. It's days like this when you find reasons to explain away the behavior. You think that he "might be coming down with something" or "his head might hurt". You might tell someone that he seems "tired today" or simply that "he isn't happy". You find yourself thinking he needs another nap and try to lay down with him, but he cries inconsolable. Sometimes it's an angry cry, then it's a sad cry, and then it stops. You hold your breath and don't move, thinking that he might actually be falling asleep. 30 seconds go by and the crying comes back. You try to stay calm and sing songs. You tell him it's ok and continually say "shh". Then you just hold him in silence, hoping the crying stops. Sometimes, it's too much and you call in for reinforcement so you can get away from it.

Whatever the reason, these days are hard to get through. It reminds me of how it used to be, and how it still is. On days like this, it feels like a set back and you question the progress so far. When the schedule isn't busy and we aren't going from therapy session to therapy session --- when we have a full day of "doing nothing", or running errands, or hanging out, these days seem to creep in. It's hard to stay calm. It's hard to find understanding. I feel tired and need to get away. So, Daddy takes both kids outside. I'm glad I'm not alone. The support of those around you is so important when you hit days like today. It's days like this that if someone tried to tell me that nothing is wrong with John, I might throw something.

Starbucks Cake Makes Me Happy!

You may see me eating at Starbucks a little more often than I already do. This is because John has verbalized to me (without prompting) that Starbucks cake makes him happy! His class ended early and we had some time to waste between that and another appointment, so we stopped by Starbucks and I got him a Cinnamon Swirl Coffee Cake. He kept saying "starbucks cake makes" and then something that I couldn't understand. When I told him I didn't get it, he did the sign language for happy and touched his cheeks and smiled. I've told so many people (in front of him) that he did this, so now he uses it a lot! :)

I've asked him what else makes him happy (he still can't say the hard "e" sound, so it comes out "happ-n"). So far, elevators make him "happ-n" and city buses make him "happ-n".

Driving in the car is a 'talkative' experience for John now. He points out gas stations, the post office, every city bus that drives by (which if you pay attention is A LOT), school buses (which are different from city buses and John is proud -- "skool bus --dellow (yellow)"), as well as green lights and red lights, "big guck" (big truck), car (with a Boston accent), and don't forget all of the important places like Target and McDonalds. ("McDonals other way")

I can't tell you how "happ-n" it makes me to see John express himself through language. In March of this year, I would have thought it impossible to improve this much, not only his vocabulary, but his cognitive speech. His understanding that green and red lights have different meanings ("go, go, go" and "tops" -- he puts the s at the end instead of the beginning), that city buses and different from school buses, and that Starbucks cake makes him happy are just a few examples on how far we've come in such a little time.

I asked the kids where they wanted to go for lunch the other day and John said Carls Jr. (which he just learned recently was different from McDonalds) I told him "later", which right now works really good to get him to move on from something. So, today, I asked the kids where we should go to lunch and John said "Carls Jr., Des." "Des" is Yes. So, I told him we could do that today. He smiled, "carls jr. des".

Again, to anyone that is considering early intervention, or to those that know something is wrong, but are having a hard time admitting it, let me tell you that the gains are so worth it!

To look at John's face and see him not only use language to fulfill immediate needs or label an object, but to see him express feelings is worth all the hard work. Looking back to March of this year, when John could only say 2 words that were clear, and testing at a 17 month cognitive level (when he was 30 months old), I am SO grateful for the services we are receiving. The 'formula' of services that John is getting is working and I'm so grateful that "starbucks cake makes him happy"!

Occupational Therapy

It's been a crazy week, but I found some time to write. I'm going to talk more about Occupational Therapy today. I am using a handout from John's START program orientation packet as a reference.

Occupational Therapy (OT) for children is play based and goal oriented therapy designed to enable a child to do his/her job (occupation). Some of these occupations include play, being a member of a family, making friends, performing in school, completing self care activities, and reach developmental milestones.

Occupational Therapy using a Sensory Integration Framework

The tacktile, proprioceptive, and vestibular systems (discussed in previous blogs) develop and function prior to birth, and together play a part in the development of skills. We need to register, interpret, and respond to stimuli. The organization of the senses is called sensory integration. The ability to successfully meet an environmental challenge is termed adaptive response. OTSI therapy provides the child with controlled sensory input in order to facilitate a n increasingly complex ability to create an adaptive response.

5 senses - touch, taste, smell, sight, & sound
2 others - movement and body position

Using OTSI (Occupational Therapy with a Sensory Integration framework), expected outcomes:
- increase frequency & duration of adaptive responses
- development of more complex adaptive responses
- increase self-confidence & self-esteem
- Improvement of gross and fine motor skills
-improvement in daily living and personal-social skills
-improvement in cognitive, language and academic performance

Psychologist Meeting

I met a psychologist today at Casa Colina that will work with us every other week. Today we talked about John, his progress, and his struggles. She reminded me that as we see progress, we will also see him enter a new developmental level, which could include behavior changes and struggles. She stressed that although these struggles could be difficult, it is a good thing because it is a sign that he is developing. He needs to have time to develop the understanding at each level of development. He has to go through each stage, both strengths and struggles. She said it's important to not always worry about the big picture, but to also take in each step, and rejoice with each accomplishment, even if it brings a new set of problems & struggles (because most likely, it will).

This and that...

I found a website that carries puzzles for ages 2-5 that are inexpensive and are nice "in between" puzzles moving from single piece ones. The website is here.

Last day of swim lessons for the kids was today. Katie is jumping off the side and swimming to the edge on her own now. She has learned gliding, back gliding, free style, and back stroke.

John is getting used to being in the water, blowing bubbles, kicking, and moving his arms. He enjoys water songs and splashing, as well as running around the spa, jumping from step to step.

Speech therapy is becoming more demanding and John doesn't want to pay attention. Eye contact is still very poor and he completely avoids any contact when he doesn't want to "say his words". He is learning about "quiet hands" and sitting still to listen to the directions. He is still impulsive and doesn't really pay attention to the teacher's direction. He almost anticipates what she is going to ask him to do and just doesn't sit still long enough to focus on what is being asked.

Developmentally, John has hit a different stage of separation anxiety, asserting independence, and tantrums, which is great in one sense and also exhausting in another.

As speech continues to increase and become more understandable, I'm beginning to see things that I didn't notice before, like the extent of his social delay. Prior to language, it was difficult to sense his social awareness. As it develops, it is becoming more clear how socially behind John is. Staying in a group, following directions, interactive play with others, and following a conversation is very hard for John. If he gets fixated on a particular thought, it is hard for him to move on, unless you acknowledge the thought and talk him through it. Although he sometimes can move on, it is becoming more obvious that he returns back to that same idea/thought/word and doesn't always respond to what is being said around him.

For example, in the office tonight, Katie and John were laughing about a joke Katie had made earlier by pretending to type on the keyboard and say "elmomovie.com" (which doesn't exist, but Katie thought it was funny to add the .com and got John laughing and saying it as well). This evening they were doing it again for Bill. Katie started to do something else and John kept saying it. We acknowledged it a few times and Bill asked John what he had for lunch. John ignored him, keeping the joke going over and over. Bill then asked John where daddy was and John didn't pay attention. I stopped John and asked him where daddy was and he said he wanted a bath. I told John to tell Daddy where he went for lunch and John said "elmomovie.com".

Another example today was at Speech class. I watch through a window while Tonyia works with John. When it's over, they come out and we talk in the hallway. John was upset that the door wasn't closed. Tonyia told John it was ok. He started to flip out and kept asking to close the door. I picked him up and told him to tell Tonyia goodbye. He said goodbye. Tonyia and I had a few other things to say and he started crying about the door being open.

These are just small things, but they are signs of social interaction. We need to keep an eye on it and try to talk to John in conversation now that his speech is improving so much. He is immature and delayed, and is just starting to use speech, but we need to recognize these interactions so we can help him.

"My Gym" Birthday Party

My kids attended a "My Gym" Birthday party today. Both kids enjoyed it and had a great time. It was fun for the whole family and a cute idea for a birthday party. They have weekly classes, Parents/Kids nights out (where they babysit while parents go out to dinner and kids play in the gym), lunch bunch (they serve lunch and kids can play in the gym while parents run errands), and gym free time (for enrolled students to play around in the gym).

They had structured group activities, as well as lots of Free Time for the kids to run around the gym and play.

The Gym had trampolines, balance beams, monkey bars, a ball pit, trapeze bars, rings, slides, climbing ladders, a zip line, parallel bars, toys, hula hoops, and tons of things to tumble in and on.

Both kids enjoyed climbing on everything, jumping, hanging, and swinging. John got a kick out of the trampoline and hanging from the money bars. He'd play along for a little bit in group activity, get bored, and wander off. Katie enjoyed group activities, trying to flip on the rings, and imitating the older kids. Bill, the other parents, and I could follow the kids around the gym or sit in the observation room. Bill and I took turns taking pictures and following John around.

They also served pizza, cake, and had a pinata. The party lasted 2.5 hours and the kids played most of the time. It wore them out and they are sleeping quite well right now.

Where Our Minds Go

It's amazing what your brain does once you learn your child has a developmental delay, a disability, or behavior issues. I was talking to another mom whose child was not put on the autistic spectrum, but had other developmental delays. She told me she called her son's therapist panicked one day because her son lined up all the shoes in the closet in a straight line. The therapist laughed and told her to relax. There is no appropriate way to "play" with shoes, so this was not a sign of anything wrong. (many kids with Autism do not know how to appropriately play with certain toys or appropriately use everyday objects). Although autism was ruled out for her son, this mother began looking into everything her child did.

Well, it happened with me today. I took John to the bathroom at a local restaurant. He stopped upon walking in the door, stared toward the wall, and began "flapping" his left arm. He then started giggling. I began thinking "oh no, he's flapping his arms. He has never done that before. why is it starting?"... (many Autistic children engage in self stimulating behavior, including arm flapping). Then, I looked again and noticed that he was looking at the automatic paper towel dispenser. He was "waving" his arm so that it would dispense the paper towel. I can relax now! ;)

Seriously, it's amazing how many things you look at and question, "is it the autism" or how many people just assume "it's the autism" and overlook what is really going on. It's important to remember that John is a little kid, regardless of Autism.

Obstacle Course

Tonight before bath time, we had a little "occupational therapy" of our own.

First we created an obstacle course in the living room.

Puzzle pieces were laid out on the coffee table beside the couch. Each kid chose a puzzle piece, bounced off the couch, and into the "mud" (pillow crash pad on the floor). They had to crawl through the "mud", climb up the "bridge" (ottoman), jump off the bridge, run to the "mountain" (the chaise lounge), climb the "mountain", and go over the top of the "mountain", feet first, landing on the ground, where the puzzle was hiding. They had to place their puzzle piece into the puzzle and make their way back to get another piece.

The second obstacle course was in our family room. Inside the bounce house, we placed a jar of vehicles (planes, trains, cars, buses, etc). Each kid chose one vehicle and held it in their hand. They jumped across the bounce house, landing into the ball pit, making sure they held onto the (rubber) vehicle. Hidden in the ball pit was a mini-basketball. They had to find it, keeping hold to the vehicle. Then, the basketball needed to be thrown into a basket outside of the ball pit. They climbed out, and walked across the foot path (2 small kid size ottmans) and jump off onto the ground, where on the other side was a tub of water. They dropped their vehicles into the water and then started over.

Then, it was bath time. The kids finger painted with "soap paint" during bath time. After bath and brushing teeth, we had circle time with our new puppet friends. I found some great puppets (folkmannis puppets) at HodgePodge Games. I got a cute little lamb that Katie fell in love with for "Mary Had a Little Lamb". I got an Itsy Bitsy Spider finger puppet, a large Duck for "3 Little Ducks", and an awesome turtle for "Tim the turtle". The kids love the puppets and love learning through song.

The Development of a Pre-Schooler

I was given a handout on the development of a pre-schooler from Casa Colina today that I thought was helpful and thought I'd share. It is written by Beth Witt, M.A.

The Two-Year Old

SOCIAL SELF-HELP
needs consistent discipline
allowed a degree of independence
moving from parallel to cooperative play
Curious and Anxious to explore
toilet trained or scheduled
partially undress self
feeds self with spoon

GROSS MOTOR
Can walk, run, and jump smoothly
likes to roll, bounce, and catch a ball
Balance improving
likes to pull and ride toy vehicles

FINE MOTOR
Likes to stack blocks
manipulate and makes noises with toy cars, animals, and dolls
Fits things together (cups, pots and lids, puzzles)

CONCEPTUAL DEVELOPMENT
Knows 4-8 body parts
Matches objects
Nests things by size
answers what, who, where questions by pointing or other actions

The Three Year-OLD

SOCIAL SELF HELP
more responsive to authority
learning please, thank you, my turn
Cooperative play/Fantasy play
cares about approval of others
asks lots of questions
responsible for dressing including some fastenings
help with washing and clean up tasks

GROSS MOTOR
stand on either foot briefly
begins to hop
can catch and throw ball
pedals a tricycle

FINE MOTOR
imitates a circle and a cross with a pencil
likes to color
can hold paper and scissors and cut forward on line
can work simple inset puzzles

CONCEPTUAL
knows 8-15 body parts
names actions, identify objects by function, and answers situational questions
responds to 3-6 positions words (on, in, out, up, down, over, under)
match by color
knows big and little

The Four-Year Old

SOCIAL SELF HELP
wants to help and be recognized for it
seeks adult and peer approval
may share toys to a small degree
can express basic feelings about self
can dress except for difficult fastenings
learns table manners

GROSS MOTOR
likes to climb, hop, skip, and dance
responds to a sequence of motor directions
can play simple ball games

FINE MOTOR
can imitate a square and rectangle
beginning to color within lines
traces lines
can cut out simple shapes with scissors
imitates block patterns

CONCEPTUAL DEVELOPMENT
can answer some why and how questions
aware of time and weather
sort by shape
learning position, quantity, and sensory concepts
more aware of community people and places


The Five Year Old

SOCIAL SELF HELP
respects authority
more independent
interest in group activities
loves games
independent dresser
semi-independent at grooming tasks
beginning to use a knife

GROSS MOTOR
can move in many ways
quickly follows directions
strong and confident
may ride a bicycle with training wheels

FINE MOTOR
trace name and print several letters
draws simple person with 3-4 body parts
can copy 2 shapes
colors neatly within lines
works part-to-whole puzzles

CONCEPTUAL
learning time and weather concepts
same and different
categorizing
sort by size
beginning to order and sequence events
answer questions about past, present and future
answer questions about community
compare by degree