Tuesday, August 11, 2015

Not there YET!

Often times I share success stories about students I work with - the girl with Rett Syndrome who is reading, the boy with Cerebral Palsy and multiple disabilites who writes stories with his communication book, the teenager with Angelman Syndrome who received a speech device a year ago and saw a massive decrease in agressive behaviors.  These stories, true and meant to inspire and illustrate often have a very different result.  One result I commonly hear is educators, therapists and parents who think that there is something exceptional about the child in the story. Some gift or ability that their student with a similar disability does not posess.  This leads the educators, therapists and parents to believe that their student, client or child can't possibly achieve the literacy, communication, self-regulation or other skill examined in the story.

The problem is that the comparison being drawn is often between a child who has had specfic intervention and a child who has not.  This is like comparing a "before" makeover picture of one person with the "after" makeover picture of another.  The girl with Rett Syndrome, while wonderful and smart, did not suddenly begin reading because she has something others with Rett Syndrome don't have.  She learned to read because of a concerted long term effort by her TEAM. This included not only excellent instruction by a multi-disclinary TEAM but also faith that even if we never got to independent reading with comprehension our efforts were worth it. The boy with CP and other disabilities who writes stories (usually about superheros) with his PODD communication book isn't an exception he is simply a child who's family decided to focus on what he can do,  to set high expectations and to hire homebased TEAM members to teach him the communication and literacy skill he needs to learn at grade level in school. The teenager who finally got a communication system at 13 and learned to use it to help regulate her anxiety and behavior doesn't  have the genetic mutation that leads to a less challenging form of her diagnosis, there is nothing that makes what she can do somehow singular or  or "higher functioning". The reason she has those skills is a year of intensive three to five hours a week of specific intervention to teach her how to do those things with family follow through at home.

All of this is to say that when we hear about children similar to our students, clients or own children who are doing things our kids aren't,  we shouldn't  assume that our kids will never get there... Or that the other child possess something ours doesn't.  We should realize they just aren't there YET!

Saturday, May 30, 2015

Video Modeling for AAC

Video Modeling is an evidence based practice in special education.  Entire new companies have
popped up claiming their way of doing it is magical even!  However, it doesn't take much to do effective video modeling for any skill, including Augmentative and Alternative Communication.  Essentially all you need is the child's communication system or a duplicate of it and a way to record video - which can be your phone, a tablet or a camera.

The purpose of video modeling is to create a video representation of a skill that can be watched and imitated.  Video modeling doesn't replace instruction, visual supports or interaction.  Instead it reinforces skills taught and, for some learners, can act almost as a video encyclopedia where they can "look up" how to perform a skill.  Video modeling in AAC allows students to have additional aided language stimulation outside of instruction or interactions.  It can also be a way for the student to review vocabulary they have learned.  Video models of AAC can be used instructionally or students can self-select watching them during leisure time. 

There are quite a few resources online to guide the process of selecting what to target for video modeling, creating the video and collecting data on video modeling effectiveness, such as this one from the National Professional Development Center on Autism Spectrum Disorders. There is also much to be found on Google Scholar to provide as evidence that video modeling is best practice. 

In general I use a more relaxed approach to video modeling for AAC with the following in mind:
  • When possible involve the student in the making of the video or the selection of the vocabulary or skill to be modeled.  This creates "buy in" and many students like to see themselves on the screen.  Some of my students who have helped to choose topics for video modeling learn ask to have a video when they are having trouble finding certain vocabulary!
  • Be sure the video focuses on the skill/vocabulary you want to teach.  Plan out ahead of time what you will model.
  • Make sure the video is engaging and motivating, especially if the student will be encouraged to self-select watching the video.  Using puppets, music or other motivating topics can be useful. 
    Porkchop the Pig Puppet Modeling AAC
  • Keep the videos short.  Under a minute is usually good, but under 3 minutes for sure! 
  • Create an easy way to select and access the videos for parents, aides or the student him or herself.  This can be using an app like Pictello, Go Talk Now, Niki Play or Word Toob on an iPad or similar apps on other tablets.  It can also simply be uploading the videos to YouTube, creating a playlist and bookmarking or copying a shortcut to the desktop. 
  • Consider creating playlists where the video models are a "commercial break" between preferred other videos.  The Therad app allows for this to be done on the iPad but it can also be done using YouTube or any other means of creating a playlist.  This is especially effective for kids who are "video junkies!
  • If you happen to catch good samples of effective communication by the student or aided language stimulation on video during sessions you can add these to the playlists as well.
Sample Video Models
Video model of how to say stop.

Video Model of Drink with a Puppet

This video shows a model of how to find the word "parade" after the student asked for it. 

Here is a video of a student who got herself into a situation where she needed help.  (She insisted I make the video before I helped her! Just so you think I didn't leave her stranded!)

Video Model Sample from Other People
Asking for More While Shredding

Tuesday, May 26, 2015

What I Wish I Knew at 22

Congratulations new special needs teachers!  Here are somethings I would tell myself, the young teacher, at 22, if I could (and if I thought I would listen - because I doubt I would have).

  • All you can do is your best, and you need to do it every day.
  • What you have now is passion, what you will have in 15 years is experience, if you want to make it through the journey from one to the other then you need to take care of yourself, keep learning and make it about the kids.
  • Do the next right thing.  That is how you will be able to sleep at night when push comes to shove.
  • It is doubtful you will ever really write another lesson plan, task analysis or paper but you will write evaluations, IEPs and progress notes.  If you can't learn to love them at least learn how to get through them and do them well.  A moment of great pride will be when someone tells you that you "really captured the child" in an evaluation, strive for that, see these items as ways to celebrate the gifts of each child.  (Remember there is a chance people will be cutting and pasting from your work until this child is 21 - make it something worth cutting and pasting!)
  • Don't cut and paste the narrative parts of any evaluation or IEP.  The child deserves your full attention for that part.  If you are going to cut and paste anything else be sure you don't forget to change the gender, name, etc.  You may know that the statement about, say, the reason the child requires a special vehicle, is the same from IEP to IEP but the parents don't.
  • It absolutely is possible to frame everything you need to put in a report or IEP in a positive manner.  "Jane is a wheelchair user who depends on others for propulsion" is a better choice than "Jane is unable to walk or push her own wheelchair".  Take the time to find the positive.
  • When it comes to Velcro designate a pair of scissors, "Velcro only" and remember "Soft Stays, Rough Rides" or "Hard on the Card" (the fuzzy/loop part goes on the wall/board/book and the hook part goes on the thing you will be removing and replacing). Trust me this is good advice and will save many headaches! Also "Soft Stays" means you can use felt or Veltex or your sweater or a cubicle wall to stick your cards/items/misc too. 
  • You are paid in stories, you are the one who gets to decide what kind of stories they will be.
  • Teachers' rooms can be pits of despair (yes, like in the Princess Bride) avoid them if the crowd who is there when you are is negative or complains a lot.  Try to surround yourself with people who love being a teacher.
  • School picture day might be a bit of a hassle for you, but for parents it is a view of who their child is at school.  Take time to ask if parents want glasses or a bandana on or off, wheelchairs under a drape or not or a clean shirt put on.  It matters.  Then do whatever it takes to coax a smile and charm the photographer into taking a few more shots if needed.
  • Don't terrify parents about whatever the next transition is (be it from EI to pre-school or to adult services), that doesn't help anyone, instead help them know what to look for to know things are going well.
  • Parents need to have the information you have about learning, communication, socialization and more.  Try to find a way to share it with them.  Your 30 hours a week for 44 weeks of a school year pales in comparison to their time to teach their child.  Help them be their child's best teacher.
    Image result for flies with honey
  • As my grandfather would have said, "You catch more flies with honey than you do with vinegar -- but if you really want to catch those flies consider a little BS."  (I'm still terrible at it but learning to "play the game" is a valuable skill.  It might feel like you are being manipulative but it is really being strategic.  It's a fine line.)
  • You will have bad days, you will go home crying, you will find yourself worrying about work.  That means you care.  Find ways to get through those days that reinforce your passion. 
  • Enjoy teaching, seriously, have fun.

Tuesday, May 5, 2015

Some Angelman Tips

After about five months using a robust system Samantha can order cake!
It is unlikely that any student can make you feel more appreciated than one with the social gifts often
present in a child with Angelman Syndrome. Angelman Syndrome or AS occurs in about 1 in every 15,000 births.  The child with AS is likely to have motor, balance and coordination issues that affect both fine motor skills and gross motor skills.  Medically, seizures occur in many cases and feeding issues may occur in infancy. Problems with sleep are common. 

Children with AS tend to be social, have a happy disposition and may have stereotypical hand movements like flapping.  Apraxia of speech affects all children with AS and most have only a few spoken words or communicate only using alternative methods like facial expressions, gestures, adapted sign language, and augmentative and alternative communication.  Like all children who are non-speaking sometimes behaviors act as communication if no other means is provided and taught.  Many children with AS are attracted to water and enjoy swimming, bathing and water tables. It also is fairly common for children with AS to be attracted to media such as music, videos and interactive electronic games and devices. 

Students with AS may have vision issues including cortical vision impairment, ocular albinism and other problems.  They may also have problems with auditory processing.  Many children with AS have much fairer complexions their the rest of their families.  Most learners with AS are "consistently inconsistent"  they should be measured by their best days not by the days when seizures, a disorganized sensory system or sleep issues are impacting them.  Children with Angelman Syndrome, like children with many other genetic and acquired disabilities who can not be formally evaluated, are almost always underestimated.  High expectations and a presumption of competence are essential in teaching these (and all) children.

Some tips:
  • Remember what apraxia (a key component of Angelman Syndrome) is:

    • a inability to perform a task, especially speech even though:
    • Cracking jokes!
      • the request is understood
      • there is willingness to do the task
      • the muscles work properly
      • the task may have already been learned
    • This means
      • you can't assume a child with AS doesn't understand, is "acting out" or "refusing", is physically incapable or that he or she has forgotten what was learned
      • you can assume that the more the child wants to do or say something the harder it will be and he or she is inevitably more frustrated than you are
      • the child with AS will be consistently inconsistent, not because of intelligence or behavior but because of apraxia
      • a burst of strong emotion may override apraxia 
      • Also since you can't measure the child's knowledge fully because of the combination of fine motor challenges and apraxia of speech, plus possible vision and auditory processing issues, even using high technology, you must assume that the child is competent to avoid causing an developmental disability through educational neglect
Thanks for the gifts.
  • Introduce robust Augmentative and Alternative Communication early
    • but it is never too late (the student in the picture to the right started using a robust AAC system at age 12 and is able to communicate many thoughts, ideas and feelings with her system)
    • remember you have to have words to use words - hence the robust system
    • don't get stuck in the request rut, requesting (manding) is an important skill but it doesn't need to be the first or only thing you work on in AAC, furthermore a child who is only able to request will appear to have severe developmental disabilities even if he or she does not because requesting is such a tiny part of communication and social connection.  Imagine a conversation if you were only able to request.
    • Masked buttons aid learning
      •  "Hi!" "I want iPad."
      • "How are you?" "I want drink.
      • "I see you have your red shirt on today" "I want outside"
    • masking (hiding) some vocabulary on high tech devices is one way to build motor patterns as language increases
    • intensive aided language stimulation is very effective in teaching use of communication systems or devices to people of all ages with AS (as it is in nearly all AAC learners)
    • video modeling is extraordinarily useful in AS, children with AS love to watch videos of themselves and favorite people modeling communication, life skills and academics on a computer, tablet or television screen - even mirroring a live stream of a classroom lesson or aided language stimulation can be a great tool

    • include the ability to communicate about favorite people, places and things as well as favorite past events in the AAC system along with the core vocabulary and student specific fringe words, talking photograph albums are a great way to do this! 
    • social media is an amazing inspiration to get kids who turn to faster methods like adapted sign and gestures to practice using their AAC systems - sending video texts, using Skype or FaceTime or just making and emailing a video to Grandma can create some AAC miracles 
    • avoid forcing communication use when students could be independent one their own (i.e. don't force to ask for each bite of food if they can self feed; don't force them to ask for a book or to turn the page of a book if they can just do like all the other kids and go get the book or turn the page), however these situations are perfect for modeling language on the AAC system 
    • consider alternative access methods if pointing is too difficult this can include using a
      1 for talking and 1 for playing!
      stylus, whole hand pointing, a head pointer, a flashlight, a pointing splint, partner assisted scanning and even, for some children with AS and very complex bodies head tracking or eye gaze run systems (the One Little Finger song is great for working on pointing!)
    • remember to be mindful of vision, auditory processing and sensory needs as you choose an AAC system, as well as when you design and implement instruction  
    • Remember the child needs someone to talk with, something to talk about and something to use for talking this often means a tablet for playing with and one for talking about what you are doing!
    • perceptual salience is key in AS, you must talk about and model how to talk about what is grabbing the child's attention at that moment - even if you ignore it they won't!  Name it and then you can move on, better yet name it and use it to inspire communication teaching!
    • embed AAC instruction into highly motivating activities

  •  Inclusion is a great way to ensure peer relationships and high expectations
    • full time inclusion is ideal
    • but some inclusion is better than none!
    • inclusion should include inclusive instruction (not just "specials" and lunch)  See Erin Sheldon's research on this topic for more.
    • consider inclusion in social rites of passages like birthday parties, religious ceremonies, sleep-overs, dances, prom and graduation and start teaching skills to be part of these things well ahead of time 
    • video modeling is a great way to teach both academics and social skills in the classroom and peers are often eager to help with video creation projects  
  • All Behavior is Communication!
    • Create a communication glossary that shows images or videos of the child using
      Owen's sign for "yes"
      adapted sign, gestures or other communicative behaviors so everyone will understand them.  You can then pair the glossary entries with videos of how to say the same things using the AAC system as a teaching tool.
    • Use visual supports frequently such as visual schedules, social stories and visual rules
    • Be careful not to interpret vision, auditory or sensory issues as negative behaviors
    • Remember learning cannot happen until sensory needs are met, be sure to offer sensory choices appropriate to the child's current state of arousal and teach self-regulation.  Work with OT and PT to ensure the child get enough time to move, is properly positioned when seated and has the sensory tools he or she needs at the time he or she needs them
    • Build positive behavior supports and self-talk into AAC systems.  Respecting a child's communication that she "Does not feel safe because there are too many people" is better than having your hair pulled and allowing a child to cue himself to say "I can have safe hands" is better than creating a reliance on an adult to do that for him
    • Be careful not to socially reinforce something that might be cute or funny the first time but won't be the 300th time.  Remember that it is easier not to socially reinforce something the first time it happens than it is to replace that behavior later!
    • In the same vein be sure to socially reinforce appropriate communication as it happens, individuals with AS tend to be socially motivated and skilled at figuring out how to get their social needs met

Monday, April 13, 2015


So often children and adults with complex communication needs get stuck with their only augmentative communication option being a means to request. As if "I want" is the most motivating, most valuable or most important thing to say. Sometimes kids and adults spend years "working on" requests because someone has decided on an often arbitrary data point that will "prove" they are ready to tackle some other communicative function. Let's make the idea that there is more to life than requesting go viral! Posts pictures and videos of kids and adults using AAC for all kinds of things - even if they don't do it perfectly. Let's prove we support every kid and adult with complex communication needs having a robust communication system that is rich with core vocabary and implemented through evidence based practices like aided language input that lead to every AAC user being able to say #icandomorethanrequest. So let's post those pics and videos! Here are some to get us started:

(Just to be clear - requests are absolutely  a part of a being a competent augmentative communicator and are vital to any robust AAC system. I'm not "dissing" requests or teaching how to request. I am advocating that all communicative functions are important and that everyone should be able to do more than request!)

Wednesday, December 3, 2014

Some Rett Syndrome Tips

Working with girls and women who have Rett Syndrome can be a unique and wonderful experience.  Rett Syndrome is a neurological condition that effects only girls (with a few, rare exceptions).  Although it varies in presentation from girl to girl, in general, those with Rett Syndrome are primarily alternative communicators, they present with hand wringing or similar movements and they tend to have amazing eye contact and eye pointing skills.  Most of the girls are very motivated by music and music can be an ideal teaching modality.  About half use wheelchairs for all mobility.  Most have seizures, have swallowing difficulties and have issues with unintentional breath holding.  Sleep disorders are common as are certain lung and heart issues.  Rett Syndrome used to be considered a form of autism, but it is, in fact, a specific genetic condition. 

Girls with Rett Syndrome used to be automatically assumed to have very severe to profound developmental and intellectual disabilities.  However, as more and more people are willing to practice the least dangerous assumption and presume competence and as technology has evolved to include somewhat affordable eye tracking based alternative communication systems we are finding that many, if not most, girls with Rett Syndrome have been dramatically underestimated and, sometimes, educationally neglected.

Here are just a few tips for working with girls and women who have Rett Syndrome in our classrooms and in other educational settings.
  • Bringing the hands to mid-line (the center of the body) is one of the key diagnostic features of Rett Syndrome.  This can be hand washing movements, hand clenching, hand mouthing or clapping.  The girls cannot control this movement, in fact, an attempt to control this movement may be distressing and thus increase it.  Therefore, rethink hand use goals.
    • hand wringing and related stereotypies are a hallmark of Rett Syndrome functional hand use is occasionally possible for some girls with Rett Syndrome, however, as a general rule goals that work towards hand use should be rethought.  
    • such goals are likely to be lead to frustration for the girls and for staff.  Whatever energy or effort the girls must put forth to meet such goals will be a heroic effort in battling a symptom of Rett Syndrome, it is unfair to ask her to do this while doing other important things - like learning
    • look through your IEP.  If any of the goals for communication, life skills or academics call for the girl to use her hands especially using her hands in a very specific way look for other ways to meet the goals.  Consider eye gaze from communication, switches with a head or foot movement for activating adapted items and generally adapting the environment to be accessed without hand us
    • it is ok to have her use her hands, to encourage her to use her hands, but having it be the goal may not be best overall
    • some girls do have more hand use than others, a few can hold a cup or spoon or even activate a device, but consider the effort required overall as you decide what to spend energy on
  • Remember what apraxia (a key component of Rett) is:
    • a inability to perform a task, especially speech even though:
      • the request is understood
      • there is willingness to do the task
      • the muscles work properly
      • the task may have already been learned
    • This means
      • you can't assume a Rett girl doesn't understand, is "acting out" or "refusing", is physically incapable or that she has forgotten what she has learned
      • you can assume that the more the girl wants to do or say something the harder it will be and she is inevitably more frustrated than you are
      • the girl with Rett will be consistently inconsistent, not because of intelligence or behavior but because of apraxia
      • a burst of strong emotion may override apraxia 
      • Also since you can't measure her knowledge fully because of the combination hand stereoypies and apraxia of speech, even using high technology, you must assume that she is competent to avoid causing an developmental disability through educational neglect
  • Anxiety severely affects girls with Rett
    •  Anxiety is a massive issue in Rett Syndrome.  The girls are often times unable to communicate their anxiety or ask questions to clarify situations which may be causing anxiety.  
    • Anxiety can present as increased stereotypies like tooth grinding, hand mouthing, breath holding and other behaviors; it can also present as shutting down (closing eyes, appearing sleepy) or with crying or yelling.  Very rarely, some girls may hit their heads, bite their hands or otherwise hurt themselves.
    • Teachers and therapists should seek to create a low stress, low anxiety enviroment by
      • explaining changes in the environment, in staffing, in anything that can cause stress
      • teaching about emotions and how to communicate about them
      • ensuring the girls have the words to talk about anxiety
      • using social stories to teach about how to decrease anxiety and to prepare the girls for difficult situations
      • be aware of what your students particular anxiety markers are and intervene at the first sign
      • know what music, sensory experiences and people your student finds calming and have them available, give the girl a way to ask for these things 
  • Eyes are usually the best means of communication
    • Although a few girls can speak some words and a few others can use their hands or switches to activate augmentative communication devices most girls do best when using eye gaze as a way to communicate
    • Start evaluation for high technology eye gaze communication system early, at diagnosis or between nine months of age and two years, if possible
    • there are no prerequisites for high technology eye gaze based communication, girls do not need to use low technology eye gazed interventions first, they do not have to master PECS or picture symbols first. 
    • all of the best practices of Augmentative and Alternative Communication apply to eye gaze such as: implementation of a robust vocabulary, intensive and ongoing aided language stimulation and implementation across all environments
  • Trying a high technology eye gaze system
    • Be sure you work with a company representative and/or AAC specialist who is knowledgeable about both Rett Syndrome and eye gaze tracking technologies, but if there is no one available still proceed with trying high technology eye gaze systems
    • Explain to the girl well ahead of time and more than once what a high technology eye gaze system is and what it is for, show videos of other girls using such devices
    • Schedule the demo and trial of the system for when the girl is usually most alert, for most girls this is the morning
    • Do not have the girl present for the boring set up or "how this works" session with the company representative, do not bring her in until you are ready for her to start using the system!
    • Do NOT waste time trying to calibrate the device when the girl arrives, calibration has no built in rewards and is hard to understand why is it useful from the girls perspective.  It tends to cause the girls anxiety.  Have the rep turn on a fun sensory activity for the girl to try with her eyes.  She will likely "get it" right away.  Move from there into a communication activity with a large targets and a big pay off (something exciting happens when the buttons are activated even if that something exciting is you doing what the girl tells you - sing, dance, jump).  At this point the girl may be tired.  Take her cues.  Stop before she has any sense of failure.  At the next visit move through the same sequence more quickly and then try calibrating.  Rarely after two or three sessions when the girl is awake and feeling well is there then not enough evidence to get a month long trial of a system for further evaluation. 
  •  Literacy is a human right!  Rett Girls can read!
    • start teaching girls with Rett Syndrome letters, letters sounds, letter blending and word segmenting along the same time line as typical peers but,
    • if the girl is older it isn't too late, start now,
    • reading and spelling is being accomplished by girls and women with Rett Syndrome everyday, be a part of this reading revolution and teaching reading and spelling now
  • Music as motivation
    • girls with Rett Syndrome can be very motivated by music and may be more able to learn when music is involved
    • consider music therapy and work to have it consist of more than cause and effect activities and listening to music, many girls are able to contribute to writing lyrics to music using there speech devices and many find music a way to relieve anxiety and express emotions
    • use music and music videos to teach key concepts, you can find a music video for just about any educational concept on YouTube!

Friday, November 28, 2014

Low Functioning? High Functioning? What Are We Really Saying?

This guest post is written by Mary Louise Betram.  Ms. Betram is an educator has specialized in Angelman Syndrome other learners with Complex Communication Needs (CNN).  She presents and consults internationally on Angelman Syndrome, learners with complex communication needs and literacy. 

labels aren't for people
I hate the terms/labels "low functioning" and "high functioning" because they don't tell me anything
about the WHOLE child, and I'm ALL about looking at the child as a whole person. "Complex Communication Needs" (CCN) tells me a lot about the child I am about to meet, "Cerebral Palsy" gives me an idea about any movement or motor planning difficulties and I can keep this in the back of my mind during my dynamic assessment. "Autism Spectrum Disorder" (ASD) gives me clues though I still have no idea or judgments about the particular child I am about to encounter. "Angelman syndrome" (AS) tells me a lot, though I know the "Google version" is very different to the reality.

"Low functioning" tells me nothing and gives me no clues EXCEPT to tell me about the adults who work with the child. When I read or am told that this child is "low functioning" it tells me right away that the adults in this child's life have not done enough problem solving to discover what supports the child needs in order for him or her to be successful. Calling a child "low functioning" is, to me, actually an adult saying "He's too tricky, we have no idea what he needs and when he needs it".

Children who are labeled 'high functioning' are the kids who are relatively easily to problem solve. These are the kids that make it more obvious what supports they need in order to be successful.
  • Child trying to hold a pen and is scribbling letters? Easy to problem solve - fine motor supports, handwriting supports, OT, keyboarding. Done.
  • Child with ASD and CCN who demonstrates he can navigate an iPad like an Apple Genius? Relatively simple AAC assessment resulting in dedicated device being prescribed. 
  • Verbal child with CP who attends mainstream school and is academically at grade level but has anxiety and stress during transitions? Ask child what is stressful and see what they say, develop a plan preparing for transitions, a consistent language to guide child through transitions, and enable child to have an element of control during transitions.
Kids who are called "high functioning" are the ones who are the easier ones to problem solve. "High functioning" has nothing to do with them, it's all about us and how we see them and their needs. Every single one of us has the potential to be "low functioning" if we do not have the supports we need in order to be successful. If you need strong glasses for reading and you forget them on the day you need to drive to a client in the Woop Woop (Boondocks) and you can't read the road directory (map) you are going to be pretty low functioning and have to ask for a lot of help.

If you always do the weekly supermarket shopping with a list and you leave the list at home one week, the week when relatives are visiting and some have random allergies and you can't remember what they are, you are going to appear quite low functioning as you slowly walk around the store, stopping to rack your memory about what you need, and you will probably make a lot of mistakes and come home with the wrong things.

We all need supports in order to be successful.

If the criteria for being a "high functioning" husband was related to his fine motor abilities when packing the dishwasher and folding the washing, and brushing the kids' hair and making even ponytails, then many husbands I know would be labeled low functioning. That label wouldn't tell me about that husband's incredible cooking capabilities, or his ability to create whimsical bedtime stories for his kids. The label doesn't tell me about that husband as a whole person.

I can cook a mean scrambled eggs on toast. I am a "High Functioning" Domestic Goddess when I have had a proper sleep and no travel. Ask me to make scrambled eggs when I get home to Perth (Australia) from Los Angeles (USA) and it is a different story. I will most likely drop an egg, there will be eggshell in the scramble, and I will probably be unable to string a coherent sentence together and I will most probably be crying from my jet-lag. Anyone walking in could label me low functioning. I would also appear extremely low functioning if I was asked to cook 400 servings of scrambled eggs in the Sheraton Kitchen on a busy Sunday with 25 chefs running around doing their jobs and all looking incredible high functioning.

I am very high functioning in terms of language, comprehension, and I can navigate myself around many cities very well. However, if you dropped me into the center of Baghdad I would present as low functioning. I would be terrified, unable to understand the language or communicate in a language people around me would readily understand, and I would be unaware of the expectations and of the consequences of my actions, even small actions such as how I walked or how I approached someone. I would be overwhelmed by sensory input - sights, smells, sounds. I would be a mess.

If, however, you dropped me in the center of Baghdad with a SAS Regiment (Air Force Regiment)
that had briefed me beforehand, gave me access to language I could use and understand, explained to me exactly what I would see, what I was to do, and how I was to do it then I could appear quite high functioning. If I had the supports I needed to enable me to be successful, even in just making it from the helicopter drop point to the base, I could be seen by observers to be quite high functioning. It is ALL about the supports.

Many of our students who are labeled "low functioning" are struggling to survive in their own
Baghdad. Without a military briefing, without a map, without understanding the purpose for being there, unable to understand or process the language and with no way of asking for help. How cruel of us to do that to children.

Children who are labeled "low functioning" are the kids who are the tricky ones to problem solve. They don't, "throw you any bones". They are often consistently inconsistent and the supports that work one day just don't work the next. These are the kids that need the strongest supports from aided language stimulation, a robust full language AAC systems, alternative pencils, visual supports, sensory strategies, and an engaging curriculum. If we just say, "well, he's low functioning, so that's why he can't do xyz" then it is OUR fault he cannot do xyz. What do the adults need to do in order for the child to at least have access to be successful at even trying to do xyz?

We have a duty to these children to support the team to shift the blame away from the child. I 
brutally honest with many of the teams I am called in to work with. If they say "Hannah is low functioning" then I say, "When you use that term, you are blaming Hannah for the things she cannot do. I guarantee that Hannah does the best she can with what she has, and that the things she does - communications, behaviours, movements etc - are for a reason. If Hannah has learned that it is no longer worth trying to do things then that is our
fault because the adults in her life have essentially told her to stop bothering, to give up. Let's look at what Hannah needs to be able to do and then let's think BIG about how we can support her to be successful doing it."  It is about US, not the children.

We are the adults and, frankly, we are paid to support these children to be successful. If a child labeled "Low Functioning" has Cortical Vision Impairment (CVI) and nobody on his team has any idea about what that is then the likelihood of that child being able to use his vision successfully, and to improve his vision in that class, are slim to none, and people will still see that child as 'low functioning'. When staff learn about CVI and relate that information to their student suddenly they can see that child as strategic in his movements and in his use of vision. Suddenly that child appears quite "clever" and "high functioning". Suddenly the child is able to see things. Suddenly that child is able to demonstrate his knowledge. Did the child magically change overnight into a "high functioning" person with cerebral palsy? Nope.

What did change was the knowledge, expectations, and skills of the adults. The adult now understand and implement the best support for the child and "suddenly" the child could engage with the lessons. It is not about the children. It is about us and the supports we provide.

I am not expecting that any person on the teams that I consult with become an expert in Angelman Syndrome, Complex Communication Needs, Epilepsy, medications, CVI, apraxia, dyspraxia, AAC, PODD, or Aided Language Input. I AM expecting the team to have an understanding of how these things apply to their student and how they can use this knowledge to enable their student to be successful. I AM expecting the team to problem solve.

There are many children who appear "high functioning" in some environments and "low functioning"
in others. Rather than just saying, "Jack loves art class so that's why he behaves and does his work properly" we need to look at what is it about art class that supports Jack to be successful there. What is it about art class that is missing in his other classes.   How are classes where he cannot cope and where his challenging behaviours and communication frustrations are most evident different from art? Often it is not simply because, "Jack loves art". It can be the expectations of the teacher, the way the teacher explains things, the visual supports and gestures she naturally uses as she teaches. It may be where he sits in the art room, the acoustics of the room, or the lighting. We owe it to the child to critically analyze what is it about the art class that works for Jack and how can we put those supports into other areas in his life so that he can be successful there too?

I hope more and more professionals stop using the terms "low functioning' and "high functioning" and that more parents and professionals are empowered to talk about the damage these labels can cause.  At the beginning of my presentations and workshops I talk about two of the adults with Angelman that I work. Peter is in his early twenties, is not fully toilet trained, lives with other men, has many challenging behaviours, especially around food. Peter uses some AAC, sign, gesture, and loud vocalisations. Peter loves trains and cake. Peter likes to destroy computers, televisions, and other electronics. I then show some photos of Peter. People look at Peter surrounded by food and broken computers and they say 'Yup, he has Angelman'. People comment, "he's probably deletion" (what is often considered to be the more severe form of Angelman) and "I've had low functioning students with Angelman like that at my school".

Then I tell them about Bob.  He also has Angelman and is 22. He attends community college where
he is studying a certificate in Music. Bob plays the drums, composes music using composition software on the Mac. Bob uses a 70 per page PODD book and the 60 cell PODD Pageset on the iPad Compass App. Bob has a girlfriend who he loves dearly. He has always been included in mainstream schools and lives with his mates that he has known since childhood. Bob has his own business and presents to University Business students about his business and his life. Bob attends literacy classes to improve his literacy.  People say "are you sure he has Angelman?" and "He must be ube3a or ICD. Maybe he's Mosaic?" and "Wow, he's so high functioning". 

I then show some photos of Bob.

They are the same photos as Peter.

Bob and Peter are the same person.

How we talk about someone matters.

Originally published on AGOSCI listserve, November 2014
Reprinted with permission and slight modifications.

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