Blog

Blog Archive

August, 2020

Say What? Augmentative and Alternative Communication

2020-08-11

By Liv Meriano, M.Sc. RSLP

When asked what she thought of her sister’s disability, 5-year-old Olivia paused, shrugged then turned to the reporter and said, “She’s a little different but she just needs a little help sometimes.” 

My older sister Navia was born with cerebral palsy and was nonverbal. Being so close in age, we developed our own language of eye gaze, choice making and head tilts that signaled “yes” or “no.” This slowly developed into speech generated switches and then an assistive technology device mounted on her wheelchair. She learned how to request what outfit she wanted to wear, what Friday night take-out she wanted and share all the excitement of our family vacations with her classmates. As we got older, she certainly learned how to flirt with handsome doctors and order herself a beer!

My sister was the first experience I had with someone using AAC, and the power it allows someone to have a voice – not only to advocate their wants and needs, but more importantly, to socially connect with others and participate in society. It allowed my sister to reveal her colourful personality, exercise her independence and equally as important, reveal her competence to others who would otherwise underestimate her. 

People with developmental disabilities like Down syndrome and Autism often have communication challenges too. Being strong visual learners, they can benefit from AAC intervention to help their speech, language, and social development.

So,  

What is AAC?

AAC stands for Augmentative and Alternative Communication. It captures all the things that support communication when someone cannot always rely on their natural speech or language skills to express themselves. The goal of AAC is to enhance the communication of individuals with complex communication needs.

If we think about it, we use forms of AAC all the time – we may not realize how much we communicate without speaking, whether it is giving a thumbs up to a friend from across the room or pointing a picture on the menu to signal to a waiter we want that delicious looking meal that is too difficult to pronounce!

Types of AAC

As mentioned above, there are several forms of AAC. It is likely that many students with Down syndrome will utilize more than one form of AAC to communicate.

Unaided

Unaided forms of AAC take advantage of all the ways you can use your body to communicate. This includes using facial expressions, gestures, vocalizations, body language and signs. 

Aided

Aided forms of AAC take advantage of external tools or devices. Examples of low-tech forms of AAC are things like picture symbols, communication boards or writing with a pen and paper. Examples of high-tech forms of AAC utilize technology like iPads or other speech generating devices.  

Why would someone need AAC?  

People with Down syndrome can have difficulty being understood for many different reasons. Difficulties could be related to speech; that is, the sounds someone makes using their mouth. AAC is often considered when speech intelligibility is an issue. ‘Intelligibility’ is a word often used when talking about AAC, but it has nothing to do with intelligence. Intelligibility simply means how well someone can understand. So, if someone gets across their message clearly, their intelligibility is high. If it is difficult to understand them, we would say they have reduced or lower intelligibility. Intelligibly is usually moderately to severally reduced in people with Down syndrome.

Many factors can affect someone’s speech intelligibly; for instance, where or with whom they are speaking. Typically, people who are more familiar with that person will report higher intelligibility, rather than people who are less familiar with them. Speech difficulties in Down syndrome are commonly related to problems with:

  • Phonology refers to someone’s sound awareness and knowledge. When the motor skills for speech cannot keep up with the demands of a word, the brain will create ‘rules’ to simplify speaking. For example, leaving off the end sounds of words so “duck” becomes “du.”
  • Articulation refers to difficulty placing the tongue, lips or jaw where they need to go. For example, “k” is a difficult  sound because the back of the tongue needs to hit the hard pallet, so someone may substitute a “t” sound because it is easier.
  • Apraxia refers to a motor planning issue which is commonly seen in Down syndrome. The brain sends messages to the mouth but is unable to sequence movements for speaking when asked which often results in unusual or inconsistent errors. For example, one day a child may say “dud” for duck and another day could say “uk.”
  • Dysarthria refers to a neuromuscular disorder that affects how one can clearly execute speech. Many children with Down syndrome exhibit hypotonia which could make their speech sound mumbled, quieter, hoarse or breathy.

For many children with Down syndrome, the causes of speech difficulties are related to more than one factor. Another benefit of AAC is that it can help support someone who has difficulty expressing themselves using language. Language is the words and sentences we put together.

Receptive language is often better than expressive language in individuals with Down syndrome. That is, people with Down syndrome often understand a LOT more than they can express. People with Down syndrome are strong visual learners, so AAC can help them better communicate with others using words or putting together sentences to be better understood, if they have an alternative way to do so. No matter the way someone communicates, no one should have no access to communication! 

AAC Myths and Realities 

There are many myths about AAC, which can impact the willingness of a family to pursue it for their loved one. Thankfully, due to research, we confidently know more about the positive outcomes of AAC for individuals with complex communication needs. Below are the most common myths we come across:

AAC hinders or stops further speech development - Myth!

Fact: AAC does not stop the development of speech or someone’s motivation to use their speech. In fact, it may enhance the development of natural speech and language when intervention is multimodal and incorporates forms of AAC.

AAC is a “last resort” in speech-language intervention - Myth!

Fact: AAC can play many roles in early communication development. Research has shown it to have better outcomes in encouraging more spoken output, expressive and receptive language and decrease frustration and challenging behaviors when introduced early on. There have also been studies that show significant benefits in socialization, independence, and self-esteem.

AAC is only for children who are nonverbal - Myth!

Fact: AAC is for any person who does not have reliable communication 100% of the time. Meaning anyone whose natural speech or language skills do not meet their needs to participate in all aspects of their life, could be a good candidate for AAC.

If your loved one does not have effective communication, consider referring to an SLP for an AAC consultation. They will do an assessment of your child’s speech and language abilities and recommend what system best fits your child’s needs.

Strategies for the Beginning AAC User

If your SLP has recommended an AAC system for your child, you might be wondering, what do I do now? Or you might be thinking – I do not need to use an AAC device with my child because I always know what they are saying!

Parents know their child best – there is no doubt! However, we cannot assume our AAC users do not have more to say. Using AAC at home also gives our users more practice with their system – whether that’s picture symbols, signs or a speech generating device, so they can use it more independently and with other people who are less familiar with them and might not know what they are saying.

Below are some tips that are intended for individuals who are in still learning their AAC system and are not yet independent communicators.

1. Always Have It Available

Where is your AAC system at home? It is important to give your AAC user access to an AAC system all the time. That means that it is out, charged, within reach or always in the same place.

2. Model, Model, Model

As we know, children learn how to speak by hearing their parents and other people around them speak all the time. With AAC learners, they also need to see what it looks like to communicate using their AAC systems in interactions. We can’t expect them to learn forms of AAC without being shown how. You do this by pointing to words on their system when you talk with your AAC user or simultaneously signing as you speak. This is called aided language stimulation. You don't need to model every single word you say. Instead, model the most important or core words. Do this at or slightly above your AAC user’s language level so they start to learn their system too.

3. Find Opportunities to Use it in Your Day

Once you feel comfortable modeling AAC, find natural opportunities to use it in your daily routine. Your AAC user will learn their system faster, the more you build in opportunities for them to use it. And what better way to build in natural opportunities, than at home? Think about all the different words you could model! The more opportunities they get to practice, the more likely they will generalize their language skills with different activities and people.

References:

ASHA (2020). Augmentative and alternative Communication.  American Speech-Language Hearing Association. https://www.asha.org/PRPSpecificTopic.aspx?folderid=8589942773&section=Key_Issues

Barbosa, R., de Oliveira, A., de Lima Antão, J., Crocetta, T. B., Guarnieri, R., Antunes, T., Arab, C., Massetti, T., Bezerra, I., de Mello Monteiro, C. B., & de Abreu, L. C. (2018). Augmentative and alternative communication in children with Down's syndrome: a systematic review. BMC pediatrics18(1), 160. https://doi.org/10.1186/s12887-018-1144-5

Beukelman & Mirenda. (2013). Augmentative and alternative communication: Supporting children and adults with complex communication needs (4th ed.). Baltimore, MD: Brookes.

All Through the Night

2020-08-07

Reprinted from 3.21: Canada's Down Syndrome Magazine (Issue #3: The Health Issue). Click here to download the full magazine.

In 1949 the Geneva Convention condemned sleep deprivation as a cruel and illegal form of torture. Right up there with waterboarding and starvation, it will cause all sorts of physical and mental damage. And crankiness… so much crankiness.

My oldest daughter settled into a sleep schedule with the greatest of ease. By six weeks she was sleeping through the night. Naturally, I chalked it up to superior parenting skills on my part, smug in the way only a first-time parent with an easy baby can be. I had Opinions. Theories and Opinions and a list of the Best Books to be read on the topic.

When her sister came along two years later, she put a dent in my confidence. She refused to sleep in her crib. At all. Or in the bed beside me - something we swore we’d never do, but in our exhaustion resorted to trying. The only place she would fall asleep, and stay asleep, was in her infant car seat. We used to strap her in and swing her back and forth through the air with all our might. If the Olympics had added an infant tossing event, we would have been serious contenders. By eight months old, we were putting her car seat INTO her crib each night, and eventually she began to sleep like a normal baby. And not a moment too soon, as the child we had affectionately dubbed “Buddha Baby” was far too chubby to swing through the air anymore. My strong-willed second child took the all air out of my smug.

But it was our third daughter who really taught me the meaning of exhaustion. Not right away; in fact, our initial trouble with her was excessive sleepiness. It wasn’t Becca’s diagnosis of Down syndrome, but persistent jaundice that kept her in the special care nursery those first three weeks. She just couldn’t wake up long enough to eat. Breastfeeding was not happening either, because she lacked the strength. Each mealtime would begin with us stripping her down to her diaper and callously wiping her with a cold cloth… poor little peanut. And still she would drift off after only a few ounces. We had to add a booster supplement to her breast milk just to help her gain weight.

The next three years were a constant struggle to get her to consume enough calories to thrive. But she was adorable, easy-going and slept more than any of my other kids. It wasn’t until Grade 2 that she was able to make it through an entire school day; until then, I picked her up early each day for her afternoon nap.

Most children are finished with their afternoon nap by age two or three, so our pediatrician suspected that her quality of sleep might not be adequate. Sleep apnea is a very common problem for children with Down syndrome, due to a crowded upper airway. The treatment is removal of tonsils and/or adenoids, and if that doesn’t work, the use of a CPAP machine. We were referred for a sleep study to get to the bottom of it.

The polysomnographic (PSG) evaluation started with a questionnaire and examination by a respiratory doctor, and then a few weeks later Becca and I trekked out to Children’s Hospital for the night. By now, my easygoing baby had grown into a feisty preschooler, and she had absolutely no intention of cooperating with the strange lady in blue hospital scrubs. Despite the comforting presence of her very own pillow and her favourite tattered teddy, this was NOT her room and NOT her bed, and putting stickers on her arms, legs and head was NOT her idea of a good time. In the end we waited until she had fallen asleep to put the band around her chest and stick the sensors on with a thick putty. Several times she woke up and pulled them off, and we’d wait until she fell back asleep to put them on again. She eventually slept for a long enough stretch to get the results we needed.

Our next appointment was an extended Q&A session with our charming sleep specialist. Dr. Ipsiroglu is one of those rare professionals that seems unrushed, like he has all the time in the world to get to know his little patient and figure her out. The sleep study results showed no sign of apnea, but clearly something was going on. It turns out that Becca, myself and both her sisters have a hereditary form of Restless Legs Syndrome (Willis-Ekbom Disease). The brain creates a sense of discomfort when legs are kept still, making it hard to fall and/or stay asleep. The doctor prescribed an iron supplement, as well as plenty of exercise and fresh air.

At this point we’d filled out checklists, sleep logs, and answered so many probing questions about our bedtime routines that I felt like a bug under a microscope. A diagnosis felt like a gift. A really crappy gift that I’d love to return, but at least it explained our ever-sleepy Becca, not to mention my own insomniac tendencies. And we were finally done with it. Or so I thought.

Fast forward about a decade - through the nightmares of childhood cancer, leg surgery, and puberty. Becca had a rough few years, to say the least. We added an autism diagnosis to her list, which has helped us understand her and her behaviour much better. Her cancer is in remission, her legs are straightened out, and she’s settled firmly into adolescence. But her sleep is worse than ever.

On a good night she’s up at least three or four times; on a bad night it can be six or more. Lack of quality sleep affects emotional stability, the ability to learn and remember, fine and gross motor skills, alertness, immunity to illness, and can even cause premature aging. Which is why I feel about 87-years-old most days.

Some nights she comes into our room, puts her nose a millimeter away from mine and stares silently until I wake up. It’s as creepy as it sounds. She’s been known to cover her dad’s mouth and nose until he wakes up gasping for air. Other nights she employs the poke-and-whine method: Mom-Mom-Mom-Mom-Mom-MOOOOOOOOOMMMMM! If we lock our door, or hers, she’ll pound on it and throw her body at it and scream until everyone in the family (and likely in our townhouse complex) is thoroughly awake. And, since it’s the question we get most often, she can keep it up for hours. The word in the autism community is “perseveration,” and it’s her super-power: she is obsessively persistent.

Instead, we clamber dead-eyed out of bed and run through her going-back-to-bed routine over and over again. “It’s bedtime, time to go back to sleep.” We tuck her in, sing her a lullaby, and promise to tell her little brother that he’s not allowed in her room. No, she can’t have another drink of milk until morning and yes, she has school tomorrow, and goodnight. “GOODNIGHT. Yes, I love you. For Pete’s sake, just go to sleep!” Rinse and repeat until she’s quiet. I take the first shift, until 3 a.m.; Dad has 3 a.m. on. She’s up for the day by 5 a.m.

She loves to wander the house at night. Strange things are done for midnight fun in our house. One night we woke up to the sound of giggling, only to find Becca and her little brother, TV blaring at full volume, stripped down to their pull ups, soup spoons in hand, preparing to share a bowl full of Flintstones vitamins. Childproof does not equal Becca-proof, as we have learned after many rounds of child locks and high cupboards and hiding treats.

It’s not all naked drug parties, either. Her signature move is to eat an entire carton of ice cream, leaving the empty box in the freezer with only a spoon at the bottom, as if to taunt us. Since she’s lactose intolerant and not toilet-trained, the consequences of this binge are usually… quite… unpleasant.

Remote controls often go missing, as do school supplies, toys, charging cords and occasionally a shoe. She likes to hide things, then forgets where she put them. Our heating vents were stuffed full of small items she managed to fit through the holes. When she figured out the deadbolt on the front door, she took it upon herself to trot down the block in her nightgown and fill the mailbox with “letters” – mom yelling behind her.

The scariest moment thus far has been the night she stuffed her brother’s pictures and school papers into the oven (I’m not sure what he’d done to annoy her). She pushed some buttons and managed to turn the oven light on. I still have visions of a housefire if she had hit “Bake” instead.

Safety is our biggest concern. It overrides all normal parental boundaries, something typical parents often find shocking. But our little Houdini is a problem solver, so our systems are constantly evolving. We had rigged up a sleep tent to keep her safely in bed at one point (with liberal use of sewing supplies, superglue, and safety pins), but she hid my nail scissors under her pillow and cut it to shreds. At this point we have an extra high baby gate installed at the top of the stairs, reinforced by 2x2s and locked with a combination bike lock each night. This way she has access to the bathroom and our room, but nothing that can cause irreparable harm.

My husband can’t resist posting the latest hilarious Becca escapade on Facebook, and we do laugh – so much. But it’s not really that funny in the middle of the night, or the next day when we have to pull over to take a nap while doing school drop-offs, lest we fall asleep at the wheel. Nor is it good for her, for us, or the rest of the family. Year upon year of sleep deprivation takes a toll behaviourally, cognitively and health-wise – for all of us.

I could write a book on everything we’ve learned about proper sleep hygiene (that’s what the fancy professionals call bedtime habits). Fresh air and exercise during the day, then a consistent routine of calming activities before a set bedtime in a quiet, cool, dark room. The longer we struggle in this area, the more convinced I am that it is a crucial need. When sleep improves, everything improves – it is more powerful than all the other therapeutic, educational and medical interventions we have access to.

We have tried All. The. Things. We have seen doctors and psychiatrists and behavioural consultants and sleep specialists. We have done another round of sleep studies and appointments and tried a long list of drugs. We have tried suggestions from family and friends and social media and strangers. Most recently, we have ordered a very expensive Safety Sleeper Tent especially designed for youth with autism, thanks to an extremely generous family member.

I wish I could say we found a magic cure for sleep issues: that one special technique that made all the difference. But life is not that simple, especially for those of us who have children with developmental disabilities. Some days are pure survival mode, and I’ve stopped beating myself up about that. Because that’s all I’ve got in me. Over the years, we’ve found a hundred little things that work for us, or work for a little while at least, and we just keep on trying.

That’s all good parenting is, in the end: loving our kids and trying our best.

Recommendations:

Sleep Better: A Guide to Improving Sleep for Children with Special Needs by V. Mark Durand
Abram’s Nation Safety Sleeper 

Submit

Feature Video

Home Sweet Home
See More on Youtube

From The Blog

Please check out our latest blog!
Read More on The Blog

Our Next Event

See more Events
3.21 Magazine
Down syndrome information and inspiration for Canadians
Subscribe

DSRF's Down Syndrome Swag Shop

Official DSRF merchandise and exclusive Down syndrome t-shirts, hats, baby items and accessories!
Go to the Down Syndrome Swag Shop
Down Syndrome Resource Foundation
1409 Sperling Avenue, Burnaby
British Columbia, Canada
V5B 4J8

Fax: +1 604 431 9248
Phone: +1 604 444 3773
E-mail: info@dsrf.org
>