Tools of the Trade

After a couple of years of trying to understand what's going on with Alexander, we are finally at the point where we are making some pretty big and helpful changes for him to function better both at school and at home. I want to write about what has worked for us, hoping that it might also help someone else.  This post might be more interesting for other special needs parents, than my family and friends, but feel free to read on :)

Visual Supports

Although Alexander understands and knows many words, he usually has a hard time understanding the concept of what is being explained to him.  Since his verbal reasoning is so low, we have started using more visual cues, and it is amazing how well they work.  I'd never have guessed something so basic would be so effective!

Here are the visual cues we use now (and some we will be getting from clinic next week):

• Morning and Bedtime schedules - these have worked very well.  He has a set place where he can check his schedule to see what he has to do next, and gets the feeling of accomplishment to finish all the tasks on the list.  We are also getting a visual schedule that I'll hot glue on the inside of his lunch bag to remind him to eat.  Alexander has lost 5kg in a couple of months due to decreased appetite as a side effect of one of his meds, and usually goes to school for 8 hours on nothing to drink and 2 small crackers.

• Weekly Visual Calendar - we are getting this next week, but it is essentially a bigger version of the bedtime routine, with each day of one week, showing him things like "school", "home", "Grandma's", "Gymnastics", "Physio", "playground" etc.  This will hopefully help him understand how the week works, and show him that he does have time to play at home (his absolute favorite thing to do).

• Cards - they are making cards that say "Oh No! Oh Well" to keep at school and at home, to help remind him that he can let things go when plans change.  He is very literal, and often gets very anxious and upset when things don't go the way he thinks they should.  We have had some success role-playing this with him, and I think the visual cue cards can only help.  When he remembers that he should let something go (for example not get very upset if someone did not log off the computer), he now starts over his reaction, and says "oh no, daddy didn't log off!!!" then looks at me and says "oh well", and proceeds to log off himself.  In the past, this would be a 15 minute rant, and frustration all around. All of the cards (except the grandma one) will be used at school and at home. We are getting the following cards:
• "Oh No! Oh well"
• "No Big Deal"
• Picture of Alexander NOT calling mommy while at Grandma's house (big frustration, ruining visits)
• "no" signs that are see-through, and can be placed over other things.
• White Board/Chalk Board Stickers (!!!!!).  The OT gave me a few stickers from Staples - meant to use as labels etc, but they are so incredibly useful for any kid at school or home!  We put it on Alexander's desk, and so, when plans change, or he needs an extra cue or hint, there's essentially a white-board on his desk.  His teacher loved it, and I think she is going to Staples to get it for all the kids!

Occupational Therapy Supports:

• Weighted Pencil - Alexander has a very weak grip, and generalized hypotonia (weak muscles), and with a weak grip comes awkwardly holding his pencil, and disorganized printing.  His OT had him try multiple different writing tools, but the one that he liked best, and wrote better with, was his weighted pencil.  It's cheap to make, and has helped his legibility a lot.

• Slant-board/Slanted desk: Due to his hypotonia and left handed-ness, Alexander is "hooking" when he writes.  From what I understand, this means he excessively bends his wrist (thumb hooked toward arm), which causes pain, and - again - awkward, not legible printing.  To fix this, we have started using a slant board at school.  All it is, is a thick binder or two on top of the desk when writing - which keeps him from being able to hook his hand.  When he tested it, he liked it better with the slanted board, and I could see that the hooking completely went away.

• Left-hander friendly worksheets - Also to reduce "hooking.  Kids/people who are left handed often ends up bending their wrist like this, to be able to see what they just wrote, or to see the question or math problem they are answering.  His teacher will make sure he has work sheets with questions on the top or right side, with room to answer on the bottom or the left side.

Gross Motor Help:

• Special Helper - every morning, in stead of running around outside, Alexander gets to go inside and help his teacher, which he loves.  This means that every morning he starts his day by lifting all 22 chairs off the desks, and thereby working on his core muscles.  His principal even suggested he should get a "chair monitor" badge ;)

• In the mornings, he goes inside early - partly to be a "special helper", and also to be able to get his outside clothes off, inside shoes on before the crowding that happens when 22 kids are getting backpacks, snow-pants, coats and boots off.

• Extra space - In stead of moving Alexanders hook, because he needs extra space to get dressed, his teacher moved a bunch of kids hooks around.  They don't know it was because Alexander needed space, because a lot of kids were moved. <3

• Physio Group - this week Alexander starts physio with 4-5 other kids like him.  They will all be having fun, working on building muscle strength, balance and coordination.  They are doing things like cross country skiing, rock climbing, and even practice riding bikes (something Alexander still is not able to do at almost 8 years old).

Ipad Apps

Alexander likes technology as much as most other kids his age.  He has an ipad because it has many helpful apps to help him (and me) out - but of course he loves Angry Birds, Cut the Rope and  Tank Heroes the most ;)

Choiceworks ($4.99)

This app is amazing and very easy to use, and there's 3 parts to the app. It has a "schedule board", a "waiting board" and a "feeling board".  We use it for his school-day - showing him what activities are happening each day, and in what order.  When an activity is done, he simply drags it across.  It is keeping him from interrupting his class, asking his teacher over and over for certain parts of the day.  This app can also be used for time outs or times they have to wait or be quiet, or for small social stories about feelings, explaining what the child can do when they feel frustrated or sad etc. In addition to using the library of images, you can upload your own.

 First Then Visual Schedule ($9.99 - also available for Android)

This is another visual schedule app.  It allows you to make a schedule for your child, then chose if they see only one action/part of the schedule at a time (then swipe for the next part), or two (First I do x then I do y), or a longer list with the full schedule and all the steps.  It can be used to make some very good schedules - especially for kids who want to see pictures of themselves doing all the steps.  This app does not have a big library of images, but comes with the option to take pictures with your ipad/phone while making the schedule.

Stop Go Timer (free)

This is a timer that looks like a traffic light.  One of Alexander's obsessions used to be traffic lights, so he  loves it.  You set the time, then you chose if the light remains red, then turns to green, or the opposite.

Dexteria ($3.99)

This is a fine motor development app to work on fine motor manipulation (pinching to pick up crabs), finger sequencing and isolation (using fingers to tap colored areas), and to improve finger control by writing letters and staying within the lines.

Sight Words (free)

The name says it all.  This is an app with flashcards to practice sight words.  You can use the decks provided or make your own.  I got the list of the sightwords from pre-K to grade 3, and made them into a deck.  Whenever we have 5 minutes, we cuddle up, and practice reading words. There is also an option to record you reading the words as well.

Flash Cards: ($3.99)

I love this app, and it is so worth the $4!  It is an app that allows you to make your own flash cards.  The cool thing though, is that your flash card can have up to 4 or 5 sides or pictures and text!  We have used them to write facts about things Alexander is interested in, and added pictures and maps.  

Example: One of our decks is "River Fish" (one of his interests).  So the first card has a picture of a fish, with its name written below it.  You could also chose to write the name on the next side, so they could first see the picture, then the word.  

So for us the River Fish deck goes like this: (-> means swipe) 

Picture of a Nile Perch, and the word Nile Perch -> Picture of a map of Africa and text: The Nile Perch lives in Africa. -> picture of map of Africa with the Nile on it and text: The river Nile is in Africa. -> Another picture of the Nile Perch with the text being facts about what it eats and how big it gets.

Next Card: Picture of a hippo, text: The Hippo also lives in the Nile, followed by sides of the card with facts about the hippopotamus.

Next card: Nile Crocodile with pictures and facts.

You could also use this for sight words, or possibly even for visual schedules.  I think it could be useful for taking pictures of your kids, and writing small stories about them (to practice reading).  This app will keep track of what you got wrong or right (swipe down for wrong, and up for right), and will test the ones you got wrong more often (useful for sight words).

Make Sentences (free)

This app has pre-written words that the child has to sort into sentences.  A voice will say the sentence, and the child has to remember it, and put the words in the right place.  They use sets of words that are similar, increasing the length/complexity of the sentence:  "this is a home", "this is my home" and "is this a home?".  His teacher really liked this one.

Ant Smasher (free, also available on Android)

Although this is more of a "game", I think it's probably good for hand-eye coordination.  The kid has to smash ants, but make sure to not touch the bees, and the levels get increasingly difficult.  Alexander loves this one!

I am sure there are many more apps, but these are the ones we use the most.

Well these are some of the things we are currently doing with Alexander that have been helpful.  I am always on the lookout for new and better ideas, but this is where we are at now :)