There is a perception ‘out there’ that children who, for all kinds of reasons, are labelled or identified as ‘non-verbal’, are unable to communicate. That having less speech than other children (or no perceived speech at all) means that they cannot share how they are feeling, what they need, what they want to do, or any of the vast range of things that humans communicate with each other all day, every day.

This perception creates huge levels of anxiety both for the children themselves and their families. Speaking ‘like everyone else’ becomes a mountain to climb, something that must be conquered at all costs. What it can also do is to overlook and diminish the many other wonderful ways that children communicate, often subtly, but nevertheless being used clearly to share so much with us.

Those who have studied nonverbal communication tell us that perhaps 60-70 per cent of our communication doesn’t rely on words. So why do we put so much energy into trying to force our ‘nonverbal’ children to use that 30-40 per cent of communication and speak, instead of also focussing on learning their communication skills and ways of sharing with us that are perhaps twice as common? It’s like trying to teach Japanese to a child without understanding or using their own first language.

Whether it is the use of eye contact, facial expressions, gestures, positioning and posture, all kinds of body language, mood, or the sounds made, the loudness, pitch, rhythm or tone used, all and more are communicative.

My son, James, has a very limited range of verbal communication, maybe 20 words that he can use, but his communication is fluent. He makes it abundantly clear how he is feeling, what he wants or needs, what he wants to do etc. We just need to tune in to his communication and understand it. Just like any ‘language’ it can take time to learn the communication our children use; sometimes we don’t pick up on something straight away and this can cause frustration, but patience and practice help!

One of James’ few words is “appy!”, which he will often use to communicate how he is feeling, whether he is happy or not. If James uses “appy!” while his face is frowning and his lips are turned down, if his eyes are downcast, if his tone is abrupt and low, if he is scrunched up on the sofa with his legs pulled up, he is telling us how he is feeling in all of those ways while using “appy!” as a general catch-all for feelings.

Non-Verbal communication is complex and can take more decoding than verbal communication, but it can be just as rich and expressive if we are willing to learn it. So, if your child is labelled or identified as ‘non-verbal’, as well as carefully exploring ways together to see if they can develop some use of speech, make sure you learn their language too…it’s just as beautiful!

1.  We’re just like you. We love our child unconditionally and to us, our child is perfect. Yes, if I could, I’d take his disabilities away but that doesn’t mean he is any less perfect.
2. At times we get fed up, we’re only human and life is sh*t sometimes. No, I wouldn’t choose this life for my child but it’s the life he has been given so I’ll make damn sure he’s the happiest he can be.
3. My child is nothing to be feared or avoided. He cannot speak and struggles to move his arms and legs, but he is a child, just like yours. He is a child just like his twin, he just happens to be disabled.
4. My child throws tantrums just like your child, but these can often be on a bigger scale because he can’t communicate verbally what is wrong. It can take us longer to soothe him but that doesn’t mean his feelings are any less valid, he simply needs love, care, and attention.
5. My child loves to play just like every other child. He is happy and wild. He loves reading books and getting up to mischief.
6. Having a disabled child does not mean we’re ‘rolling in it’. Contrary to popular belief, disability benefits are minimal. Despite Alfie having a diagnosis that will never improve, every few years we have to apply again, giving the same information, filling in time and time again what Alfie cannot do.
7. The NHS/Government does not provide everything my child needs, it’s why we fundraise. We get the bare minimum. Though we are grateful for the equipment we are provided with, it is often old equipment that needs updating and is more cost effective for the NHS. Cost always plays a big factor when a child needs a new piece of equipment- often bigger than needs and suitability.
8. SEN parents are basically doctors, and that is no way intended as an insult to doctors. We need to know everything about our children, past issues, present and potential future. We also get trained in a matter of days, things it takes doctors years to get signed off on (no joke). The medical terminology and techniques become second nature- you need it to care for your child and keep him alive.
9. I don’t know how I do it either. For us, this was never a choice. Our child is disabled, and we will always be there, no matter how hard it gets.
10. I’m not superhuman and every time someone says anything along those lines, it reminds me of how different my life is. It reminds me of everything Alfie should have had.

The other day someone asked me what my plans were for my daughter next year regarding school. What am I going to do? At the moment we are attending a school program one day a week, which essentially is an extension of Early Intervention therapies. We are slowly introducing her to a more structured environment outside the house, but her 4th birthday is approaching, so soon we will be transitioning into Prek. 

Sometimes I feel like I am waiting for an adult to hold my hand and guide me through these things, but then I remember I am the adult. I am fantastic when it comes to remembering medicine schedules and juggling therapy, but when it comes to typical parenting milestones I am absolutely clueless. My daughter is an only child, so I do not have anything to compare my experience to. 

It has been a struggle balancing my work life and all of my daughter’s needs.

It has been a struggle balancing my work life and all of my daughter’s needs. I am a hair stylist and am only able to get child care for a couple days a week to maintain my client base. I never intended to be a stay at home mom. I love my career, and want to do everything necessary to continue it. The thought recently occurred to me that school would also equate to more opportunities to work. 

As enticing as working more is, there is always a level of anxiety of leaving her with people I am not familiar with. Also, the daunting process of doing everything needed to get her established in the school system. I feel completely out of my element. I know I need to get the transition started though, because kindergarten is right around the corner. 

One thing disability parents excel at is adapting to new and sometimes less than pleasant situations.

One thing disability parents excel at is adapting to new and sometimes less than pleasant situations. One thing we are not the best at is relinquishing control. Although I love seeing my daughter have more opportunities to grow and learn, it is hard not being by her side in the process. But in the long run I believe it will be what is best for us both. 

CAREGIVERS INTERACTIONS

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PARENTS BELIEFS AND PERCEPTIONS

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DEVELOPMENTAL OUTCOMES

Studies show that a parent’s perception of their child with special needs impacts the child’s social-emotional and cognitive development. There are many stressors for new parents, and even more so, if your baby was born prematurely or with a chronic condition. 

As an early intervention specialist, I know that the parent is integral to a child’s progress. I’ve worked with parents who believe in treating a child with special needs with kid gloves, and I’ve also worked with parents who believe in tough love and who create opportunities for challenges in motor, speech, and learning throughout the day.  It’s not surprising that a child progresses faster if a parent believes they are can handle challenges that are presented to them. Now, there’s finally a study that proves what I’ve seen for the last 25 years. 

A very interesting study out of the University of Nebraska Medical Center (UNMC) proved that a caretakers’ (this study examined mother’s only but I will go out on a limb and say that this can be generalized to all caretakers) perception often infants’ vulnerability impact the toys a parent choose for them, how often a parent interacts with their baby, and how often a baby is challenged.  As a result, a child may show lower cognitive, motor, and social-emotional skills later on.

It’s traumatic for a parent to see their baby in a NICU and hear all about the challenges that they may face in the future.  The study examines how maternal perception of their baby or themselves impacts a child’s development.  Results show that parents who perceive their babies as being fragile, or sick touch their baby less, change their position less frequently, and play with them differently compared to other children their age fewer a result, children have less opportunities to play, explore and interact with their environment.  In addition, babies who have parents who have less confidence, perceive themselves to be less competent to care for a child, and are more anxious have shown lower scores in areas such as movement, social-emotional development, and learning.

I won’t bore you with all the details, but early intervention specialists educate parents about their child’s condition.  With this knowledge, parents can better recognize a child’s abilities and potential and continue to create opportunities for movement, play and exploration throughout their day.  The more a baby experiences, the more they’ll feel and process.  Every experience is a learning opportunity from which to build on. 

Every child will face numerous challenges, some more than others.  As a parent of a child with special needs, the drive to help them be comfortable and happy may compromise their journey towards using trial and error, motor processing, being independent, and taking pride in one’s accomplishments. Believing in your child and challenging them may be the best thing you’ve ever done for them!

Dr. Sharon Pediatric Physiotherapist