What factors do we think about when considering high-tech AAC?

This blog post comes thanks to a Parent who asked me a question on Twitter.  Thankyou for all your questions, it helps me to understand what you need from me.

In this case, the child was using a low-tech AAC system, but being considered for transition to a high-tech system.  The Parent wanted to know what sort of things a Therapist is going to be thinking about if they think a child is ready for high-tech AAC.

First, an overview:  If you live in England, your child may be able to access funding for a high-tech device through one of the specialised AAC assessment centres across the country.  If your Speech Therapist is considering requesting funding for a device through this system, then there will be specific criteria that need to be met, which will form part of the assessment that your local Speech Therapist is carrying out.  One of the jobs of an assessment is to make a decision about which funding ‘pot’ would be appropriate if we do decide to pursue getting a device. In our area, key criteria are that children can combine more than one symbol in a message, and that they show some navigation skills using low-tech systems (e.g. they can navigate to the right page to build the message they want).   This does not mean that there are not options for children who do not meet these criteria, but that we will be thinking about different funding options.

Each child is a little bit different, but some general principles we will be thinking about if we are considering moving to a higher-tech device:

  • Does the child understand the purpose of communication yet?  Are they making intentional attempts to communicate with other people?

A child who is not yet an intentional communicator is very likely to need more practise at this cognitive skill before we consider a device.  A device is a means to communicate, but cannot compensate for other areas which a child needs to be an active communicator, such as motivation to communicate.

  • Does the child consistently access a low-tech means of communication (whatever that might look like)?  Is there some reason that this does not meet the child’s needs, or do we have reason to suspect that their needs will be better met with a high-tech device?

It can take time to get an AAC system right.  We need to explore and assess various factors in low-tech form so that we can make better decisions about which high-tech device and software will best suit a child’s needs.  In addition, we will always need a low-tech alternative to a device, for times when tech goes wrong or is not available for various reasons.

But there is definitely a point where a high-tech device will be a better ‘fit’ for your child.  Some potential reasons that this might be the case are:

    • Your child needs much more vocabulary available to them than we can reasonably keep on top of in a book
    • Your child would benefit from the wider communication options that can be available to them in a high-tech device, for example, they could use their device to communicate, but it would also open up the potential for accessing email or social media for example, which some software enables.
    • The physical access to a book is a challenge for various reasons.  A device would therefore make communication quicker and/or more independent.
    • Where a high-tech device would considerably reduce the barriers to communication for the child, for example, it would allow them to communicate with a wider range of people in their community and be understood (but we can’t forget that an electronic device can also be a barrier to inclusion if it creates fear of the technology and reduces interactions with other people)

 

  • Is there commitment from the team around a child to use a device?

This is a really big one for me – devices are typically highly reliant on everyone in an environment to be successful.  We look for signs of commitment to and understanding of a child’s communication using low-tech before we pursue high-tech.  There is often a perception that a high-tech device is ‘better’ than low-tech (not necessarily the case at all).  If a class team or family are not commited to using, updating and modelling a child’s low-tech system, then they are not likely to be able to maintain motivation to support a high-tech system.  There is often a lot of excitement when a high-tech device is being discussed, and a lot of motivation is created in the short-term.  But the truth is that using a high-tech system requires a lot of learning, thought and maintenance from everyone around a child.  It is not inherently easier to implement or use.

  • Are expectations of a high-tech device realistic?

We need to make sure that our expectations of a high-tech system are realistic. A child who has very few motivators to communicate may find a high-tech device more motivating than a low-tech one, and this may be a reason to consider a move to high-tech.  But they will not become a child who suddenly wants to chat and communicate as any other person of their age.  If we do not make sure that this is understood, then we may be setting a child up to ‘fail’ at a system because we have not had shared understanding of what our own expectations are.

  • What is the child’s response to technology generally, and a high-tech device in particular?

I would usually be interested in a child’s interest in technology, and want to trial a high-tech device with them (even of it is not necessarily what will be their system in the end), as this will give us lots of information about their readiness for high-tech.

This is a general picture of the kinds of information we will be gathering as Therapists, I hope that is helpful!

Angharad

key trans

If you would like to ask any other questions about AAC or any other communication issue, please come and find me on Facebook (www.facebook.com/findthekeyslt), in my Facebook group (www.facebook.com/groups/findthekeyfamilies), on Twitter (@FindthekeySLT) or drop me a message via email findthekeyslt@hotmail.com

 

 

 

 

 

 

What if the best Speech Therapy was your Physiotherapy?

You may notice that all the blogs I am writing this month are loosely arranged around a theme of  “do your best, don’t beat yourself up”.  This is because this pretty much summarises how I encourage families to think about their child’s Speech Therapy.  I truly believe that beating yourself up is a waste of your precious emotional bandwidth, and it’s not the best way to get things done.

I also think this is a good theme for January, the time of year when you are supposed to be most motivated and coincidentally – a cosmic joke – the time of year you most fancy staying in your pyjamas in the house.

Obviously, I think Speech Therapy is important.  In fact it can be a transformative force in a child’s life.  But the fact is, especially when you have a child with complex medical, developmental or learning needs, it can be just another thing on your list.

So I hope this blog brings you good news when I tell you that there are many children that I work with where I advise families to focus on their Physiotherapy if they want to support a child’s feeding and communication.

Oral skills for feeding and for talking are fine motor skills, growing out of the underpinning gross motor skills such as head control and trunk control.  In addition, movement is an important foundation for:

  • Motivation (if you can move, you can explore, which gives you lots to talk about)
  • Body awareness – the use of your body sensations to understand where your body is in space.  An important underpinning skill for our sensory learners, for children with feeding aversions and for many children with Autism diagnoses.

We need the best skills in the body that we can if we want to support children’s communication.  So next time you are carrying out your child’s Physiotherapy, you might just have their communication work covered too.  And next time you see your Physiotherapist, ask them if you can see them with your Speech Therapist, so they can enhance each other’s work.

Angharad   key trans

 

If you would like support and information about your child’s communication and feeding, I would love to see you in my Facebook group for Families

In March we will be having a Physiotherapist come into the group to talk about the impact of low muscle tone (hypotonia) on children’s learning

 

Stories we tell ourselves

I have been ill all over Christmas.  One of those bugs that deceives you into thinking it is going and then just moves to a slightly different part of your head and throat.

I am usually pretty good at being ill- I am a big believer in resting and hydrating and letting your body do what it needs to.  But I confess that when I woke up still ill this morning, two weeks in, feeling worse than yesterday, I very much reached the feeling sorry for myself stage.

I was very tired going in to the holiday, and feeling a bit demotivated.  I was hoping a really good rest would re-enliven me for the New Year and that I would start with a boost of energy and motivation.

You wouldn’t have known it to look at me, but internally I was in full toddler tantrum mode about being ill.   It occurred to me that part of what I was feeling sorry about was that I hadn’t really been able to fulfil this storyline- yes, I had rested, but not in that restorative way, more in a ‘being immobolised against my will’ sort of way.  I hadn’t managed to catch up with the household jobs I had planned for between Christmas and the New Year.  And so I was telling myself that now I wouldn’t have the energy I needed to start the New Year, and this was a bad start to it etc etc.

This got me thinking about storylines.  In my experience, it is often not the thing that has actually happened that causes you the pain, more the narrative that you attach to it.

What storylines are you carrying about your child’s communication needs, their learning or their eating?  What storylines are you maintaining about your role as a Parent? Are your stories helping, or are they wearing you out?

Stories are a natural by-product of being human, they are our attempt to create sense out of events, and they can help us when they motivate us.  But when we are weighed down by our emotional responses to our stories and so often, completely unaware that those stories are playing out in our minds, then we can be making things much harder for ourselves.

As a Speech Therapist, it is not unusual for me to be trying to support children to develop their ability to sequence and explain events in stories.  But also as a person working with families, it is my wish for you that perhaps you can become aware of and let go of some of the stories that might be getting in your way.

Angharad

 

If this post resonates with you, I’d love it if you would join the Facebook group that I run for families of children with complex communication needs.

Lots of practical stuff about supporting your child, and a chance to talk with a Speech Therapist and with other families about communication.  I like to talk about the emotional aspects of being a Parent or family member  to a child with communication needs too, so we are here for whatever you need at the time.

 

 

Inclusion is for life, not just for Christmas

In the UK, it’s the week where the John Lewis Christmas advert comes out.  This is something of a pre-Christmas tradition these days, and the ads have a reputation for being heart-warming.

In this year’s ad, Edgar the excitable dragon tries hard to join in with the same things that everyone else likes, but he just keeps getting himself into trouble by accidentally setting things on fire.

At one point he ties a scarf around his face, hoping to stay out of trouble this time, but to no avail.  Edgar ends up unhappy and alone. Until a friend finds a role he can play (lighting the Christmas pudding), and all is well.  Consider your heart warmed.

edgar

Image by John Lewis and Partners

I know I am not alone in seeing this as a metaphor for inclusion.  The part where he wraps his face with the scarf felt heart-breakingly like masking to me (masking is a term for inhibiting your natural tendencies in order to fit in, quite possibly at the cost of your mental health).

And while the ending was heart-warming, what I actually thought was, “what’s he going to do for friends the rest of the year then?”.  It reminded me of the children who are not being well-supported in school, but who everyone feels appropriately gooey about when they are given angel wings and a halo in the Nativity.

Inclusion means providing environments that are open to making the most of everyone’s gifts, all year round.  Appreciating what they have to offer, not only when it’s convenient or heart-warming.  And accepting all parts of a person, even when that is difficult for the rest of us.

So next time you see the John Lewis ad, think about making these inclusive gestures an all-year-round thing – that would be a real Christmas miracle.

If you are looking for practical help with supporting your child’s communication, I’d be glad to see you on my Facebook page (Find the Key Speech and Language Therapy), or in my new group, Find the Key for Families.

Or think about signing up to my newsletter here, for monthly tips, resources and offers.

No hard sell, just the stuff you need to help your child!

Angharad

key trans

 

 

Everything you wanted to know about feeding tubes but were afraid to ask

I’m squeaking in at the end of feeding tube awareness week with a post for anyone who has ever wondered why children would have feeding tubes.

My special area of interest is in working with children and families who are tube-dependent (in fact, I’m hoping I will get to do research in this area some day!), and so it is a pleasure to write this post, a quick run-down of FAQs and info about feeding tubes.

What’s a feeding tube?

A feeding tube is a way of children/adults getting nutrition into their bodies that is not via their mouths.  The one you are most likely to see (because it is most visible, and also a popular solution for more short-term needs) is an NG, or Naso-Gastric tube.  That means it goes into your nose and down into your stomach.

The other tube that is fairly common is a gastrostomy (not, as a lot of people think, a gastronomy tube, though that would be great, wouldn’t it?).  This is a tube that goes directly into the stomach.  Sometimes people call it a PEG (percutaneous endoscopic gastrostomy), though technically, that is just a term for one type of gastrostomy that is put in in a certain way.

Other less common tubes are oro-gastric (from your mouth into your stomach) and naso-jejunal/naso-duodenal tubes (from your nose, though your tummy and into different areas of your small intestine).

Why would a child need a feeding tube?

There are a few main reasons:

  • The child physically can’t eat- they do not have the necessary skills to eat, or they are too unwell to eat.  This may be temporary (e.g. if the baby is premature, or they are having an operation or treatment) or it may be permanent (e.g. if the child has an unsafe swallow, leading to food or drink entering the lungs).
  • The child is finding it difficult to eat for other reasons- this can be for lots of reasons, but some children who have had a lot of invasive medical treatment, sensory difficulties or pain associated with eating, may develop aversive behaviours in response to food that stop them eating, or stop them eating a good range of foods.  These children may need all or some nutrition through their tube to support them.
  • The child is not eating enough- this might be because they have a condition that means they require more calories than average, or perhaps their physical condition means that they eat very slowly and it is difficult to get through enough food to grow.

If a child has a feeding tube, does it mean they will never eat?

Not at all!  The long-term picture for feeding tubes depends a bit on why they have been put in in the first place, but many children are able to leave them behind and move onto oral feeding.  Some children will always need them for all or part of their eating and drinking.

Won’t a feeding tube make the child too lazy to eat?

This is not the case.  Feeding tubes help us to support children to grow and develop.  There are some children who can find it difficult to move on to oral eating, but these are children who have physcial, developmental or psychological reasons why this is the case.  These children are not lazy, and neither are their families.

When a feeding tube is introduced as a short or medium-term solution, there should always be a plan for how it is monitored and how and when decisions will be made to support the transition off the tube if it is appropriate.

Children often need therapy support to help them to build skills for future oral eating.  In an ideal world, children will have Speech and Language Therapy/Dietitian/OT/Physiotherapy/Paediatrician/Respiratory Team/Gastrointestinal team/ENT/Nursing in the right combinations for their individual needs to help them and their families.

Want to find out more?

Try http://www.feedingtubeawareness.org/  and/or https://www.feedingmatters.org/

I give thanks to all the families sharing their tube-feeding stories this week, and I hope one day that all children will get the right support to reach their feeding potential.

Feeding your premature baby: Pacing oral feeding

One of the skills that babies need to develop is their suck-swallow-breathe co-ordination.  This skill is something that develops with maturity, and not practise, which is one reason why we have to chosoe our starting point for oral feeding very carefully.

Sometimes at the beginning of oral feeding, babies need some outside help to manage the co-ordination of these skills.  This is particularly true of bottle-fed babies.  When babies exert pressure on a bottle teat, milk comes out.  At the beginning of a breastfeed, it takes time for milk to flow.  To an extent, the breast and baby adapt to each other in ways that the bottle does not.  So we need to step in and make sure that we are doing this job for the bottle-fed baby.

Sometimes, babies start to suck and cannot stop.  They suck and swallow, suck and swallow, but they don’t stop to breathe.  At some point the brain recognises this as an emergency situation and they will breathe in.  In the meantime, their oxygenation levels have dropped, and their body will repond as if to an emergency.  Monitors will go off, and all-in-all this is a very stressful experience.  In addition, if they breathe in with milk in their mouth, then they may aspirate milk (breathe milk into their lungs).

We want to avoid this situation if at all possible.  Remember, finishing the bottle at this stage is not the aim, developing skills at the appropriate rate for the baby is.

Some babies find co-ordination difficult through the whole feed, but most commonly, it is the beginning part of the feed that is the issue, where the baby is most hungry and least able to regulate the amount of flow coming from the bottle well.

External pacing is a strategy that helps us manage this situation.  It involves counting a set number of sucks (I often start with three), and then dropping the bottle teat beneath the level of the baby’s mouth.  They may keep sucking for a little while, but usually they are prompted to stop sucking and breathe.  After a few minutes of this, you can experiment with giving your baby back a little more control of the co-ordination experience.  You will probably find, as the baby gets more experience, that you are having to pace them for less and less of the feed, as they mature in this skill.

If your baby is just not stopping sucking, you can actively break their suction on the teat by rolling the teat to the side of the mouth, or even removing the bottle.  This is the least preferred option as it is likely to frustrate the baby who is probably really hungry, and they will have to organise themselves onto the teat all over again.

You can combine strategies to support your baby, for example, pacing and positioning, as discussed in a previous post.

Posts from Find the Key Speech Therapy are intended for information.  They are not intended to, and cannot take the place of advice from an appropriately qualified Speech and Language Therapist who knows your child.  Find the Key Speech Therapy does not take responsibility for the use of any advice without appropriate professional guidance. 

Feeding your premature baby-Getting started with oral feeding- Positioning for feeding

There are a few ways that we can influence how successful our baby is likely to be when orally feeding.  It is important to note that we cannot make a baby feed successfully.  Only your baby can tell us when the right time for them will be.  What we can do, is:

  • Introduce feeds at the right time for your baby
  • Only fed your baby when they are showing the right cues for this feed
  • Make the task of feeding easier in subtle ways that will make learning to feed a little bit less effortful.

One of the things we can do is by varying our feeding position.  I am going to talk here about one of the main positions that we recommend for helping establish oral feeds, but it is important that you take your own baby into account, because each baby is different.  Even if you do not end up using this position, you can adapt the principles to support your baby.

The position we are going to talk about is elevated sidelying.  This is technically more of a bottle-feeding position, but it is similar to breastfeeding positions, albeit the baby lies in a different orientation to your body.

What does it look like?

In elevated sidelying, you will usually need a pillow for your legs, and a footstool.  It is very important that you are comfortable,as well as the baby!

      • Sit yourself comfortably, with your feet up on the footstool.  Put the pillow on top of your things.
      • The baby lies away from you on its side, along your legs, with its head towards your knees, and its bottom against your body.
      • You hold the bottle to the baby’s mouth with one hand, and use the other hand and arm to support the baby along their back.

 

Why is elevated side lying a good position?

  1. It gives babies as much support in their body as we can

When we feed orally, it is easy just to focus on the baby’s mouth and what is happening there.  However, your baby’s skills in their mouth are very closely related to what is happening in the rest of their body.  If we hold babies in ways that make them work hard to maintain their body position, then they have less ability and energy to concentrate on what is going on in their mouths.

Term babies have fat pads in their cheeks that help them to stabilise around a bottle or breast nipple.  Premature babies do not have these, and so their mouths are also more ‘wobbly’ and this will make generating suction more difficult.

Elevated sidelying means that the baby is getting a lot of support from your lap and the cushion.  The hand you have at their back is also offering support in ways that will allow you to respond as they need to move and adjust.

2. The position is best to help your baby’s breathing and heart rate. 

Compared to other positions, research indicates that this position maintains your baby’s oxygen levels more successfully and was associated with less variation in heart rate.  This is likely to reduce their chances of becoming stressed during feeding.

3. Keeps them as safe as possible

If your baby gets more milk than they can handle from the bottle, then it is likely to run away out of their mouth to the side.  This might not appear to be a good thing, but when we feed in a reclined position, gravity will tend to take the milk to the back of the mouth.  If your baby cannot cope with the volume, reclined feeding is more likely to make them feel overwhelmed, to be aspirated and to result in stress cues.

When milk comes out of the side of the mouth, it gives us important information about how well a baby is coping, and we are not increasing their risk.

4. Lets you see the baby

You should always do elevated sidelying in a way that let you see your baby’s face.  This is important for observing their cues.  The hand behind them also lets you get feedback from what you can feel.

Don’t be afraid to talk about different feeding positions, for breast or bottle feeding, with nursing staff, and/or your Physiotherapist or Speech and Language Therapist.

Posts from Find the Key Speech Therapy are intended for information.  They are not intended to, and cannot take the place of advice from an appropriately qualified Speech and Language Therapist who knows your child.  Find the Key Speech Therapy does not take responsibility for the use of any advice without appropriate professional guidance.