I see children as kites. You spend a lifetime trying to get them off the ground. You run with them until you’re both breathless…they crash… you add a longer tail… they hit the rooftop… you pluck them out of the spout… you patch and comfort, adjust and teach. You watch them lifted by the wind and assure them that someday they’ll fly.

Finally, they are airborne, but they need more string and you keep letting it out and with each twist of the ball of twine, there is a sadness that goes with the joy because the kite becomes more distant and somehow you know that it won’t be long before that beautiful creature will snap the lifeline that bound you together and soar as it was meant to soar… free and alone.

Only then do you know that you did your job.

—–Erma Bombeck (February 21, 1927 – April 22, 1996)

During the winter break we traveled to the Philippines and welcomed the New Year in Cebu City. From that point on our holiday turned serious when I managed to book appointments at a developmental center, nicely named Kite Strings, to have J assessed. I am not satisfied with the single visits he’s had in Washington state with the different specialists there, obviously an hour of observing him and interviewing us is not going to be enough.

I was pleased to note that we got more than an hour at Kite Strings. My former boss has an autistic child, now 14 years old, and they previously moved to New Zealand to get professional help for him. Then they came back and after his wife got a degree in special education she opened this center just two years ago. The first thing that impressed me with our first appointment was we were met and interviewed by a team. Each of them, it seemed, had a child who have similar issues like our son. It was reassuring to compare notes. I appreciated it even more when the speech-language pathologist suggested that we bring in the behavior specialist. She noted that J is more capable of language than the few minutes she spent with him, but sensed that we need to determine what would motivate him to engage in conversations. This was more evident to her when we discussed his mainly dry food diet, which is the area of the physical and occupational therapist (PT/OT).

Our appointment with the PT/OT came the next day, and we got off to a late and slow start. I could not hide my irritation at times, because I had to fill out another form and went through the same interview questions. To make matters worse my husband and I had a miscommunication and didn’t have the PT/OT report from the States. She wanted to jump in and focus right away on our concerns. I thought that with her being the expert, she could at least observe or spend some time with J, then tell us how to proceed. This seems to be the theme of the center though, them asking us what our concerns and goals are. Perhaps they are more used to dealing with kids who have already been fully diagnosed and will only then draw up an intervention program accordingly. At any rate the behavior specialist finally showed up, and immediately picked up that J was always “running the show,” — that is, he would only initiate and maintain conversations on his chosen topic, which were dinosaurs. When the PT/OT tried to engage him he would avoid eye contact or turn his back when he lost interest in the activity, or wanted to do something else.

There were a lot of things that were not new to us, and this was one of their observations that I find validating (it’s good that it’s not due to clumsy parenting, but it’s not so good when even a speech-language pathologist would ask me for suggestions on what motivates our son — it’s never the same thing every day).

What was new to us was that how everything seemed to be inter-linked: son only eats dry food, does not eat meat so he does not get to chew, therefore he has poor muscle tone in his jaws, therefore he seeks sensory stimulation by chewing on tassels and towels. He is only partially toilet-trained because he is prone to constipation and pooing hurts so he refuses to sit down, and instead keeps his legs straight together.

I knew they were right about desensitizing him by exposing him to different textures — but I got defensive when I explained there are many things that are expensive or hard to find in Lagos, and I am tired of setting different bowls of food in front of him all day only to have to throw these out untouched. And they are right that we just need to keep trying because we need to improve his nutrition. They suggested probiotics (popular in Southeast Asia as Yakult yoghurt drink), and James love it, but this was the day before our departure.

Even if I was annoyed by the PT/OT’s suggestion to desensitize J to soap and shampoo, I find that after only 3 days he does not object to it anymore. Maybe he’s just used to me giving him a bath, maybe he just likes the strawberry-scented no-tears body and head wash I bought, who knows.

Now that strike in Nigeria has been called off what I plan to do this weekend is check if a similar probiotic drink is available in the groceries in Lagos.

It’s been a week now, and I’m still waiting to hear from them. I am dying to read their report and recommendations, as my online class on Autism is also starting today.

]]> http://palangga.wordpress.com/2012/01/17/kite-strings/feed/ 0 go2net http://palangga.wordpress.com/2011/12/13/livebinder-on-autism-spectrum-aspergers-semantic-pragmatic-disorder-and-sensory-processing-disorder/ http://palangga.wordpress.com/2011/12/13/livebinder-on-autism-spectrum-aspergers-semantic-pragmatic-disorder-and-sensory-processing-disorder/#comments Tue, 13 Dec 2011 21:57:54 +0000 go2net http://palangga.wordpress.com/?p=485 ]]>

I just put together my compilation of links and notes using livebinders.com, which is like having an online binder not only of web pages, but also photos, videos, and files. And it’s better than simply using an online bookmark because one can see the web pages right away. In my case I like the fact that I can add my notes and comments alongside. Diigo has a similar highlighting and sticky features, but livebinders just makes it easier to organize everything as a normal binder would, with tabs and subtabs for different topics or categories.

I am considering signing up for this online course offered by the University of Wisconsin-Stout. I have taken two online courses with them before to renew my teaching certification, but this time the decision is much more personal. My son is only four years old and will be enrolled in Pre-K next school year.  After consulting different specialists last summer and doing my own reading, I’ve determined that he is on the borderline of the autism spectrum. There’s a lot of online information that describe autism, autism spectrum disorders. But because there is such a wide range of manifestations and varying degrees of severity of symptoms, the information can be overwhelming and confusing.

If we live in the States we would have access to the services of professionals like a physical/occupational therapist who is an expert in young children who are hypersensitivity to textures (clothes and food), or a specialist in pragmatic language. But we don’t because we live in Lagos, Nigeria. Even though I count ourselves blessed to find an American speech-language pathologist who spent some time with J, she was not planning to work and thus did not bring her resources when they moved to Lagos. She also admitted to not being an expert of pre-schoolers, a difficult age. But she is continuing with her own education and has recently decided to take classes in ASD.

Because the course was designed for educators, guidance counselors, speech-language pathologists and other professionals who deal with children in Pre-K to Grade 12, I will be able to learn from the experiences and perspectives not only of the teacher, but the other students in this class. I can only read so much books and online references. The school where I teach has also blessed us with a special ed teacher whose own son has similar sensory integration issues as mine. And my sister-in-law is an early childhood teacher who has a teenage son with Asperger and a pre-schooler who is language delayed. They have been great for moral support and experts by their own right. But I need to talk to more people, more professionals and joining the online class is much cheaper than the regular consultation fee in the States.

I already know I will enjoy this class and like the textbook — if I could find a way to purchase it.

Content Outline

http://www.uwstout.edu/soe/profdev/autism.cfm

I don’t know how long I’ve had a Twitter account, but I hardly ever use it until I stumbled on Paper.Li. The latter allows me to curate tweets by people I follow, and presents these in newspaper format. Now I can check my references daily for updates and links to related sites. Paper.li also allows me to include RSS feeds from blogs which I find more useful as I have been having problems managing my Twitter list called #specialneeds. Some of these Twitter accounts and blogs don’t update everyday though, and the best way to address this is to simply add more. Fortunately Twitter also recommends related accounts. Another way of expanding is to check who they follow or what other lists they appear.

Here are the top three accounts I subscribe and have in my list:

This one is the most active and is updated almost every hour, probably because it is an institutional account of http://www.earlysignsofautism.com/

sensorysmarts

by Lindsey Biel, author of the book “Raising a Sensory Smart Child.” I also follow her posts on Facebook. This account is active and occasionally updated, though not as frequently as the Facebook page.

An RSS feed of their blog features weekly stories by different parents dealing with babies who are colic, high need, and spirited.

• Jumbo Inflatable Dinosaurs from Amazon
• Make and color your own dinosaur hats from Download-a-Dinosaur
• Edible Erupting Volcano Cake from Balloon Guy Entertainment
• How to Make Cake Pops by Bakerella and Bakerella.com

http://www.snapps4kids.com/

Hurray, finally a website that features a list of organizations that provide grants for iPads and other similar assistive technologies to families with special needs kids. The “Find an App” section categorizes the apps by device (over 500 for iPad and over 100 for Android) such as ASD, sensory, embedded skills, assistive apps, pre-school and school age games, and more. And it’s great that we already have many of the apps (see previous entry) that they recommended, like AlphaTots, Wheels on the Bus, Toddler Counting & Alphabet – Dinosaurs, I Hear Ewe, Miss Spider’s Tea Party, iWrite Words, etc. With over 600 apps reviewed this is clearly not just toddler or kids stuff, there are also apps for studying for SAT, learning the periodic table in Chemistry, and a notepad and voice recorder.

Besides Miss Spider’s Tea Party we have Dr. Seuss’ “The Cat in the Hat,” which is also in their list. But even though he’s familiar with “Oh the PLaces You’ll Go” because we read it (the actual book) to him every night for months, our son does not seem interested in Dr. Seuss characters, whether they’re in iPad apps, books or TV show. Yes, we have “Oh, the Places You’ll Go,” “One Fish, Two Fish” and also “Green Eggs and Ham.” So those e-books have not been opened more than once or twice. He clearly Miss Spider’s Bedtime Stories and Twinkle Twinkle from Super Learning, and I’m guessing it’s because of the graphics and choice of interactive activities. He also likes How to Train Your Dragon because he has seen the movie, and would sometimes have both movie playing on DVD while he’s on the book with the iPad or playing with his dragons. But one of the best, for me, is the PopOut! The Tale of Peter Rabbit (free version and $4.99) and I just downloaded their other pop out book, “Denslow’s Night Before Christmas” (the free version does not finish so get the $4.99 complete version!). I’m not surprised it was cited in the iPad Hall of Fame and Kirkus Top Book App of 2010. It looks and feels like a traditional storybook, but every illustration has a hidden surprise, waiting for your child to tap or swipe his finger on the right spot. For my son, the best would have to be Thomas & Friends: Misty Island Rescue ($4.99), but that’s because it has video clips, jigsaw puzzles, matching game, and coloring book — so it’s really not fair to call it a book and compare it with other e-books, but it’s worth it.

As my son is crazy about dinosaurs, it’s hard to beat the National Geographic Ultimate Dinopedia (worth every cent at $4.99), but the storybook March of the Dinosaurs (too expensive at $7.99, but I love my son, what can I say) comes close. Incidentally, ScrollMotion, the company that developed Dinopedia is also behind many children’s storybooks on ditial format, such as Sesame Street, Curious George, Veggie Tales, Mr. Men, Todd Parr, Candlewick, and kindermusic titles … but because they designed these ebooks for the iPhone, there is some pixelation when viewed on iPad’s bigger screen, and that is even before you pinch to zoom in. Makes me think twice about shelling $4 for each book, but will reconsider if they produce something in high definition as the Ultimate Dinopedia.

I will definitely be visiting SNApps4kids.com regularly. As a working mom/teacher I hardly have time to browse for more apps since classes started.

P.S. The website also offers a compilation of organizations that provide iPads and similar assistive devices for families with special needs kids. There’s a section on how to set up the iPad and install apps, as well as community forum if you decided to become a member.

These are the applications that we’ve acquired since we bought an iPad for our three-year old son last June. It has proven to be very beneficial, and we sometimes refer to it as his $1,000-pacifier. We quickly put it to work the next day for our 3-5 hour road trips between Atlanta and Charleston, then to Savannah and back to Atlanta.  It has also been wonderful to have for the flights to Seattle and the return trip to Lagos (10 hours), not to mention through countless meals in restaurants, when we could actually even order desert.

But more important, our son had a growth spurt and vocabulary explosion coincidentally during these summer months. He was not only talking more, he also got more confident and less shy in talking to other kids and grown-ups. True his echolalia kicked in high gear, and he would be exclaim “Bingo!” and “You got it!” appropriately, but he was also picking up new words everyday.

Here then are the notable ones that we both like:

Alphabets

• Alpha Tots ($2.99) – this and their Tally Tots for counting are our top favorite. I am impressed by the quality of the graphics and animation. It is also very engaging and intuitive, my son figured it out without my help.
• Animal Pre-school Word Puzzle (FREE and $1.99 versions) – My son likes to play the puzzle game with the animal name in letters. Tap on the letter and a voice will say it, tap on the illustration and it will say the animal name. Before I could decide if the $1.99 version offers more advantages my son got bored with it — but I know when he’s older and needs to learn to spell this will come in handy.
• Fish School HD ($.199) – anything by Duck Duck Moose is fine by me, which is why I got all their other products with children’s songs. This one includes letters, numbers, shapes, colors, and matching activities. A very well-designed and fun interactive app.
• Letters A to Z ($0.99) – I like the colors and artwork, but my son got bored of this quickly. If this was the first alphabet app he tried he probably would have played more, but it’s not as animated or as engaging as Alpha Tots or Fish School.
• Redfish Alphabet 4 Kids (FREE) – So, so but it’s great as a basic flashcard and it’s free. Highly recommended for children with special needs, and even if I was not too impressed, my son does play with it from time to time. With others apps he would play nothing else but one app for 2-3 days and never again … then he would play with this when he gets bored with the flashy or the latest novelty.
• Toddler Counting & Alphabet – Dinosaurs ($1.99) – oi, my son is obsessed with dinosaurs so I obviously couldn’t resist this one.

Animals – names, illustrations and/or photos, sounds

• Animal Fun (FREE) – a simple animal learning program for children. Children learn about animals by seeing and hearing the sounds an animal makes. It also has a spelling feature. Better than most apps that come with a rpice, so get it while it’s free!
• Animals – Zoo and Farm ($1.99) – uses a combination of photos and illustrations, instruction and games.
• I Hear Ewe (FREE) – a simple game full of 24 different authentic animal sounds and 12 different vehicle sounds for toddlers. When your child taps on an animal or vehicle icon, the game will verbally announce what type of animal or vehicle it is and play a recording of its real sound.
• JungleSpeak (FREE) – brings the sights and sounds of a variety of animals. Also has coloring book feature and video clips.
• Preschool Playmat ($2.99) – great activity set, even if the illustrations look cheap, because of the interactive games my son: matching card game, match the animal with the silhouette, and click and drag counting game. For this price I hope they will add more animals and/or games, because my son is done playing with it.
• SoundTouch ($2.99) – my favorite, every time you tap on a selection it shows you different photographs (good ones, too) and plays a different sound of the same animal or vehicle or instrument. It cycles through 3-4 images, so your child will see more than one kind of lion or boat or guitar.
•  Toddler Flashcards ($1.99) – better than regular flash cards of animals, food, objects because it plays sounds and talks in English, Spanish, French, Chinese. There’s also free version.
• 123 Talking Coloring Book ($0.99) – on sale at 75 percent off until Thursday morning! 123 Color teaches numbers, letters (upper and lower case), and colors, spoken in English, Spanish, French, and German, with cartoon illustrations, voice-overs, music, sound effects, and animation. Popular children’s songs like Wheels on the Bus and London Bridge are also included.

Special Interest

• Giraffe’s Matching Zoo (FREE & $0.99 versions) – my son has good memory and visual skills, this one offers more cards (20 pcs) and challenge than the matching games that come as add-on for toddler apps.
• Sound Shaker ($1.99) – this is one of those rare apps (like Angry Birds) that my son and I fight over the iPad. It’s fun and lets my child get creative with different music instruments simply by tilting the iPad here and there or tapping on the color dots, which correspond to a different note as it gets bigger. I did worry that my son might drop the iPad.
• Tally Tots – the best counting game there is — great animation, kid-friendly activities, and bright colors. It helped my son count beyond 10.
  
• Touch & Say (FREE) – so cute and so much fun. I got this for my son, because I also wanted him to learn about emotions. It has color, songs, and talking features, but our favorite is the silly sounds feature. Designed and recommended for kids within the autism spectrum.
• Zoo Train ($1.99) – he loves trains and he gets to build tracks, enough said! Okay, it is a 5-in-one fun pack with word puzzles; picture puzzles with animals; train builder where your child gets to pick out his engine, caboose, etc.; track builder; and train whistle music. They also get stickers as rewards.

Coming up NEXT: Interactive books and tie-ins

Early Signs of Ages 0-4

• Quiet baby, content most of the time.
• Likes playing alone repetitively.
• Difficult toddler with no sense of danger.
• Does not respond to name, at times appears deaf.
• Late talker, does not babble.
• Speaks out of context, memorizing phrases of favorite tv shows.
• Inconsistent eye contact.
• Late pointer, unable to express wants.
• Fussy eater, refuse to eat certain textures.
• A loner, prefers to play alone then with peers of the same age.
• Late in recognizing self in pictures or mirror.
• Unable to initiate play with other children but will interact with in rough tumble play.
• Difficulty sharing, tantrums persist.
• Good with jigsaw puzzles, numbers, letters, shapes & colors.
• Prefers helping in real activities like washing up, or operating a computer.
• Repeats like a parrot.
• Obsessional interests.
• Very independent, does not ask for help.
• Inappropriate response to sensory stimuli like touch (does not like light touch or being touched by strangers), pain, sound.
• Difficulty in following rules (complex games).

More tell tale signs as if my son’s name was written on this page: Semantic Pragmatic Disorder basics

Now whether it’s part of ASD or not, my husband and I decided it’s just a matter of labels and semantics. What is important to us is we can focus our priorities on where our son needs help the most, which is in social communication skills, such as engaging in back and forth conversation. This is even more important as he has a year to prepare for pre-kindergarten school. Yes, he has inconsistent eye contact, not good at group activities or role playing with other kids, or has sensory regulation issues — but these are only evident when he’s hungry or tired, and therefore can be managed.

Here are more relevant links:

• Semantic Pragmatic Disorder
• Semantic Pragmatic Disorder, SPD (High Functioning Autism)
• Semantic Pragmatic Impairments – Information Sheet
• Questioning the validity of the semantic-pragmatic syndrome diagnosis
• The connection between Semantic Pragmatic Disorder and Aspergers

This morning our precious initiated a game with candle blowing for oral motor skills. He saw that the tea candle in the scented oil vase was lit and wanted to blow it. Instead of discouraging him, which I used to do, we took out a lovely snowflake-shaped candle, lit it, and set it down before him while singing “Happy Birthday.” His first attempts were unsuccessful because he tucked his lower lips in, but after we showed him how to purse his lips he finally blew the candle out. We tried this 4-5 times more, and will probably try it again. We also had him play with his recorder, which he learned to do when he was only 10 months old. Next we had him blow balls of different size, weight, and material using a milk shake straw.

Here’s a video clip of him singing and reliving scenes from his favorite TV shows. Although he does not like it when we sing, he started to sing along last May and taught himself the words to some of his favorite theme songs. I love the fact that he is making up his own dialog here and there, and demonstrating some creativity in pretend play.

The earliest sign took place when he was just a month old, at the staff Christmas party hosted by our boss at her residence. We arrived early, but as soon as we walked in the gates our baby started crying. He was inconsolable even after we took him to a dark and quiet guest bedroom, then decided to simply leave the party, and long after we got back home. That took at least an hour. It might have been the smoke from the barbecue, or the smell, but it was very unsettling. Being first time parents we were at a loss, while others told us that was normal. What I didn’t ask was — maybe I was afraid to admit my ineptitude as a mother — whether intense tantrums and inconsolable crying for an hour or more EVERY week was normal; and why it usually occurred when my husband was away and I was left all alone with our son. Oh, the times I cried and couldn’t tell anyone!

Here’s a video clip, and you can hear us laughing as my son tries to do a bear crawl because he didn’t like the feel of the damp grass. It’s not so funny anymore.