Nutrition plays a critical role in the lives of individuals with disabilities. For these especially children, providing adequate nutrition is not just a necessity but also a challenge that demands creative and adaptive solutions. Various challenges related to nutrition make feeding an uphill task for many, such as difficulty in chewing or swallowing, chocking, aspiration to mention but a few. Their limited movement affects their ability to effectively feed however nutritious food may be necessitating modifications based on each individual’s needs and type of disability. It is therefore paramount to recognize these unique needs and address them with compassion and understanding to ensure that everyone has access to proper nutrition.
Adaptive Eating Guide
Creating an adaptive eating guide involves collaboration between healthcare providers, nutritionists/dietitians, caregivers, and the individuals themselves (if possible). Here are key strategies that can make a significant difference:
1. Personalized Meal Plans
Every individual’s needs are different, and nutritional plans should be tailored accordingly. Consider the specific limitations, food availability and preferences while designing meal plans.
2. Incorporating Assistive Devices
Innovative assistive devices like adapted cutlery, plate guards, and sippy cups can empower those with motor difficulties to eat independently. Depending on the resource setting, modify the devices and be creative using readily available materials in the homes. (Avoid making it more expensive for the families than it already is)
3. Simplified Meal Preparation
Introducing easy-to-cook meals that require minimal effort and adaptability in the cooking process will ease the burden for the caregivers and ensure timely meals. Ensure the meals maintain a balanced diet.
4. Education and Training
Educational programs about adaptive cooking techniques and nutrition management for caregivers and individuals can forge paths toward self-sufficiency. Organize with those in authority and find the best way to support these individuals and their families.
Embracing Adaptability and Inclusivity
Adaptive eating is more than a list of guidelines; it’s about creating a society inclusive of those with disabilities, especially in areas where scarcity prevails. By focusing on adaptable nutrition strategies, we can ensure that every individual has the means to thrive.
Are you or do you know a nutritionist/dietician looking to dive deeper into disability nutrition or want to craft comprehensive guides? Reach out and find out how to access our full adaptive eating guide. Together, we can foster a world where everyone has access to the nutrition they need and deserve.
Disability is a normal part of human diversity. It may be permanent, temporary, or fluctuating. It may also have a minimal or substantial impact on a person’s life. A disability may affect mobility, learning, feeding, or communication and can result from accidents, illnesses, or genetic conditions. To have a disability means one has fundamental difficulty accomplishing things that others take for granted.
Nutrition and disability are closely interlinked. A differently-abled child is often in greater danger of malnutrition because sometimes the child has difficulty sucking, swallowing, or even holding food. When this happens and there is no one to help, it deprives the child of the nutrients for their age hence leading to malnutrition in the long run. Feeding is very important for all children not only because they are at the peak of growth but also because they are vulnerable. Some bad or misinformed decisions made in a child’s feeding can have lifelong effects. For example, stunting (children having a low height for their age) among children is irreversible after the age of two. It is important to look at nutrition keenly when discussing disability. Poor nutrition can cause a disability or aggravate the disability itself, but also disability can lead to poor nutrition and cause a child to suffer its consequences.
Tips one can use at mealtime for differently abled children
Oral motor challenges – Oral motor-based feeding problems, arise from the child’s physical disability, which limits the child to achieve good gross-motor coordination (skills that require whole body movement and which involve the large muscles of the body to perform everyday functions) and movement in their body in order to achieve sufficient oral-motor skills.
Tip -To help the child feed well, modify their posture by using some support where needed. Allow the children to practice a feeding skill over and over until their body coordinates it automatically.
Sensory issues – Sensory-based feeding issues are the underlying factors to most feeding difficulties in differently abled children. The combination of food texture, temperature, and taste can be off-putting to some children and cause frustration like among children with autism. These children usually stick to foods they are familiar with, and soon these foods are the only ones that they will eat.
Tip – Slowly modify the child’s diet without upsetting the child. Gradually introduce new food or texture to the child’s diet without eliminating the food the child is familiar with. For example, if the child enjoys boiled irish potatoes, you can introduce them to an egg by presenting it in the shape of an irish potato and serving it alongside their usual delicacy. The changes in texture, temperature, color, or taste should be slight but noticeable.
Another way to help children with feeding difficulties is to allow them to help choose foods they would like to eat and allow them to help prepare the meal for as long as it is possible. Expose them to different textures, smells, and tastes along the way.
Medical challenges– Some feeding difficulties that differently abled children face are a result of the medication that they have to inevitably take or the therapy they must undergo. This usually alters their taste for food and suppresses their appetite in the long run. Some children end up vomiting each time they eat certain foods and may even refuse to eat the food in the long run. Some of the food is also temporary or permanently omitted from the child’s diet because it contradicts the medicine given.
Tip – Discuss with your child’s physician and nutritionist to identify alternative foods that the child can eat and still be healthy and thrive without compromising the medication given.
Behavioral challenges – There is an array of behaviors that can affect the feeding of a differently abled child. One of the most common behavioral challenges among differently abled children is seeking attention. Differently abled children seek a lot of attention when feeding. If parents enable this behavior, it becomes very difficult for the children to eat without that attention. They will throw tantrums and often refuse to eat completely, hence suffering malnutrition and other complications that arise from not feeding or not feeding well.
Tip – Gradually eliminate this behavior by being stern but with positive reinforcement. Say, when the child throws a tantrum, you can warn them against it and enforce a soft compromise for them to know how serious you are. For example, ‘If you eat this food, I’ll let you play for 10 minutes with your sister’. Sometimes, you may use what we call extinction/planned ignoring. For example, say, ‘Mummy doesn’t carry children who do not eat; she only carries those who finish their food.’ The other option is to gradually walk through the steps of eating with the child. Start by having the child touch or play with the non-preferred food. Then, increase the task to slowly taking a bite and keeping it in the mouth for a few seconds. After, encourage the child to chew it slowly and then ask them to swallow it. This requires patience and progress and the child’s voluntary participation.
Family feeding dynamics – These are some of the hardest feeding difficulties to deal with. Parents and caregivers are the most important and pivotal components in implementing feeding strategies not only for differently abled children but also for other children. Many parents feed their children foods that they enjoy. It is important that you give the child many options, including foods that the parents don’t regularly eat as long as they will provide the child with the necessary nutrients for them to thrive. Their diet ought to be diverse.
Tip – Clearly define the roles of the two parties involved in this feeding exercise: the parents or caregivers are responsible for providing the food, while the child is responsible for eating and choosing how much to eat.
The child should feel as comfortable as possible when they are eating. Feeding is a social activity. Therefore, when the child feels uncomfortable feeding while in a particular social setting, you should be able to recognize and find out why as soon as you can. This is not the time to put the child in between your legs and hold their nose for them to swallow food.
Feeding is not and should never be a fight. Refrain from forcing the child to eat. Simply present them with both preferred and non-preferred foods and let the child choose. When children feel like they have control over the situation, it’s easier for them to try new foods. Parents and caretakers should be open and adapt whenever the need arises. Go slow with the child and make them feel as comfortable as possible.
You can find all this and more my “Differently Abled Nutrition,” a book written for parents and guardians of children below the age of 5 and children with a disability that affects feeding.
We often do not mind disability until it comes knocking at our doorstep. Everyone as long as we live is liable to interfacing with a disability at one time, either by it happening to us, to our very own, or to one we know.
In my line of work, I work very closely with children that have a disability (usually one that affects feeding) but it breaks my heart that usually these parents and guardians feel that during the course of their life, they must have stepped someone’s toe and they have to pay for it that way. The bitter truth is no one is shy of disability. Anyone like I said can interface with disability at any point in their life.
It is our duty to be empathetic to these persons, not sympathize please, it sucks but emphathetic. Today I am just here to mention that having a child with a disability is difficult, there are so many emotions at play without enough time to process them. In my book, Differently Abled Nutrition (you can order a copy here); a book I wrote for parents and guardians who have children that have a disability that affects feeding, I talk about these emotions in detail and so much more.
Get yourself a copy of this book, gift someone you believe needs it. Together we can be empathetic by sharing useful knowledge.
Dear parent, your emotions are valid
Denial
This is where it usually begins. You sit across that table and the doctor breaks the news that your bundle of joy is going to be a little bit atypical. Or your child is growing and not hitting the milestones as expected only for the physician to break the news that there will be some delays, the first ship you often the board is the denial ship.
Denial is refusing to acknowledge or accept that your child has a disability. First, there is blame apportioned to self and for some pregnant women whose child has not yet seen the face of the earth battle depression and the thoughts of not continuing through with the pregnancy increase. It is only sad that some of our colleagues in the practice only fuel these thoughts but offering the option to terminate the pregnancy. My dead one, this emotion is valid, just don’t stay there, don’t walk alone
Anger
Anger and denial are siblings who often ride together. Many times when this news is broken, you do not throw a party in your backyard. Questions like ‘why me?’, ‘what didn’t I do right?’, e.t.c run through your mind over and over again. When the stress becomes too much, it then boils into anger. The anger can be shown outwardly in form of rage or it can get one to withdraw due to the overwhelming feelings of guilt and shame. Displacement of anger is often seen among parents expressing itself through verbal attacks on anyone who may blame them for their ‘unfortunate’ circumstances.
This emotion too is valid my dear one, normal and purely understandable as a way of acknowledging the injustice that has been done on your child. The important thing here is to try and find some balance not to be carried away. This is most likely not done alone. The sad reality is that many marriages crumble at this point so try and find help
Fear
Fear is defined as an unpleasant emotion caused by the threat of danger, pain or harm. This is another emotion that is very common and perfectly valid. Fear often arises from the uncertainty of what to expect in the future as the child grows. It is burdensome for a parent to know that they are their children’s only defence and protection and when they are away from the child despite them growing into an adult, the child is vulnerable to attack, mockery, ridicule and difficulty in living. The imagination of society’s rejection for their little one coupled with the health challenges bound to be faced leaves parents gripped with fear.
This emotion usually breeds bargain where parents begin an unending journey of looking for a permanent cure or miracle to return their child to normalcy. Unfortunately many are ‘duped’ of even the little resources they have in exchange for empty promises.
Grief
This emotion is filled with a tremendous sense of loss that parents feel upon learning of their children’s apparent disability. This emotion just like the ones above is valid. We usually spend a lot of our lives making dreams that we would want for our children when the time comes so anything that interrupts this dream is extremely unsettling and brings with it a lot of grief. Allow yourself go through this emotion, try not to fight it, get help if it is possible but most importantly, do not stay there.
Guilt and depression
This emotion is often caused by the constant challenges parents and guardians face as they care for their children who have a disability ranging from social isolation, financial strain, outright exhaustion, feelings of confusion. Often time if these feelings remain and the person does not find relief, they can fall into deeper depression which could manifest in form of insomnia, fatigue, low self esteem, social isolation, changes in appetite to mention but a few. Valid an emotion as it is, it is important to seek help as it comes with compromised mental health for the parent.
Acceptance
Of all emotions, I love to call this the ‘happy emotion’. At this stage, the parent begins to dream again. They have gone through lots of emotions and have tasted the grief and fear, processed them well enough to know that all is not lost and they can dream again. At this stage, they are fully involved in the child’s life and activities, fully mastered their communication traits and can understand their emotions. Life becomes as normal as it can get and if there are siblings at home, they have fully understood how to handle and deal with their brother or sister. This is a grateful phase where parents are thankful for every step reached.
In conclusion
There is no definite line to demarcate the end and beginning of an emotion. They keep over lapping each other, a roller coaster of sorts and one often circles from one emotion to the other. There are always good emotional and bad emotional days, but when the good days outweigh the bad emotional days then we can comfortably say that we are good to go. It takes time but allow yourself to experience every emotion without feeling guilty. Try as much as possible to get all the help you need, but most importantly do not walk the journey alone.
What is the first thing that crosses your mind when you lay eyes on a person living with a disability? Empathy? Pity? What emotion crosses your mind?
People living with disabilities have continuously faced stereotypes from every social group and even their families. Although lately, the world is showing more respect towards them there are still some things that able bodied persons say and do, many times meaning well that come off offensive. The next time you come face to person who is differently abled there are things that you may want to caution your brain not to process and your mouth not utter them.
Things you should never say/do to a person living with a disability
Offering help without being asked
You must be wondering why I had to begin here but where else if not here. Naturally we are empathetic beings and more than often we shall offer help when our minds perceive that the other person is finding difficulty accomplishing a particular task. Persons living with disabilities may take time to accomplish a task but that does not mean that they cannot do it on their own. Whilst offering assistance every now and then would make life easier for them, it is actually rude to ask this person not to stress and you go ahead and do it for them. It is best for you to allow them to try out some things on their own until they ask for your help or until you see them struggling and then ask for their permission if to offer them assistance.
You are such an inspiration
Inspiration is a feeling of enthusiasm you get from someone or something, that gives you new and creative ideas. If you describe someone as an inspiration, you mean that they make you or other people want to do or achieve something. When referring to that person living with a disability as an inspiration, is this what you mean? If it not please save yourself and say nothing
For able-bodied people, living with a disability and being able to live normally must be one of the bravest things possible reason many people feel the need to tell people living with disabilities that they are inspiring or brave either in a way to encourage or just to voice out how they feel about the person’s disability.
Unfortunately, kind as it may sound, many people living with a disability don’t want to be considered brave or inspiration just because they are able to live with their disability. Unless this person has performed a task worthy of praise, you should never tell them that they are an inspiration by virtual of their existence in the typical world.
Asking what got them where they are
“Curiosity killed the cat” is one of the most used proverbs which simply refers to being inquisitive about other people’s affairs which may get you into trouble. Poking your nose into someone’s business is one of the most disrespectful thing you can do to anyone, not only persons living with disabilities. Never look at this person and dare ask, “What is wrong with you?” Of what help will this be if this person told you? Can you do something about it in the first place? So why ask anyway.
Try to imagine how you’d feel being asked about your medical history by someone you hardly know! As you get to know someone better, you might start to talk their about their disability and in most cases it comes from the person themselves but remember some people might be very comfortable talking about their disability, while others may not be, so take cues from the person themselves before indulging into that conversation.
I know someone who knows someone who can fix you
Remember the uncalled for help I talked about earlier? This deserves its own special mention. There are people who always know a wonder drug, a special physician, or miracle working pastor/priest they are willing to offer to anyone who cares to listen. Disability comes with a plethora of emotions for both the bearer and those around them, something I talked about here. So chances are that the time you come offering your uncalled for help, they have explored more than enough options many of which could have been so disappointing. Again unless asked you may want to keep that information to yourself or find creatives ways to make recommendations.
Refrain from comparison
“You don’t have to do what everyone else is doing.” – Oprah
So you know someone A living with a disability and in your judgement someone B’s disability is not as serious as the other person. in no time you find yourself saying “You are lucky your disability is not as bad as the other person“
Many people with disabilities come across this statement in their workplace, schools and social gatherings. Sometimes this statement is made as a form of encouragement in a way to tell the person with the disability that they should be happy that their condition is not as worse as the next person. Other times, it could be said to evaluate how much help someone is entitled to.
Whatever the case may be, the statement is wrong and counterproductive. People living with disabilities have varying strengths and weaknesses and should never be compared with others living with disabilities for whatever reason. Most people tend to show more compassion for people with physical disabilities as they consider their situation more serious than those with mental disabilities. It is best to never assume what someone with a disability is going through because you do not have the slightest idea what their world is like.
Talk to me normally
One person living with a disability complained that, ” It’s irritating when people talk to me as if I’m a child – they spot my hearing aids, and they suddenly think they need to revert to loud, slow baby-talk for me to understand them. But I struggle with my hearing, not my comprehension. I can ask you to speak up or more clearly if I need you to! “
While some people slip into childlike language, others feel the need to pump up the volume or start talking really s-l-o-w-l-y. However, even if the person you’re talking to has a hearing impairment, neither of these things actually help (sorry, but it’s true). It is helpful to just speak at your usual pace and volume, and make sure the person you’re talking to can see your mouth (in case they rely on lip reading). If they don’t understand, don’t repeat yourself over and over – just try phrasing things in a different way.
Always remember that beyond that disability that you see, there is a whole person and the key is in understanding disability is just a part of that person’s identity and NOT the entire identity. Let us all be advocates for our brothers and sisters. It is Day 7 of the #WinterABC2021.
We are already in the 2nd week of the writing magic here at #WinterABC2021 and this is a special one where we look at advocacy. We get to talk about things we wish the world could pause and reflect on to bring change and make the world a better place.
I chose to camp at the street of persons living with disabilities for this week because we are now living in times where the empathetic battery is constantly beeping to be recharged. Gone are the times when we lived as a whole, being our brother’s keeper and looking out for each other. Lately it seems to be about oneself and their immediate people. Truth is times are hard for everyone but it gets even tougher for someone who has to work twice as hard to accomplish the same task as someone else. To give you an example for context, look at an autistic child who struggles with communication having to express themselves among people who do not necessarily struggle with communication. Chances of these people being patient enough to wait for this child may be quite low.
There are about one billion people around the world with some form of disability, and 80% of this population lives in developing countries. In Uganda alone, it is estimated that 12% of the population has a disability. This is presently approximate to 4.5 million people. The proportion of children aged five years and under who had a disability in Uganda, according to a report on Persons with Disability published in 2019 titled “BRIDGING THE GAP THROUGH STATISTICS”, was 1.6 percent and 1.8 percent for females and males, respectively. In Uganda and the world over, disability is both a cause and consequence of poverty and people often face significant barriers that prevent them from participating fully in society; including getting quality education and employment. People with disabilities are likely to face more risks and vulnerabilities along their life cycle, and face barriers resulting in limited participation, such as accessing public transport, getting adequate healthcare and employment.
But do we ever think about the challenges that these persons face on a daily not forgetting the parents and guardians of these children? Disability in childhood can have a lifelong impact on a child’s physical, mental and emotional health, and their social situation when they become adults.
No parent dreams of walking into a hospital and coming out with a child who is anything less than healthy. When a child is born with a disability, it becomes a blame game between the parents, if not the two extended families. I am Ugandan; and from my background, it is common practice and norm to have a healthier child and base it on good patriarchal genes. Should the child be anything less than a healthy child, it is usually the mother to be blamed. Some people will assume that the mother must have done something wrong; perhaps sinned gravely or irked ancestral spirits. Often, her in-laws or the father of the child will ridicule her for giving birth to a child with a disability. Sometimes, they will throw her out of her marital home or abandon both her and the child. Sometimes some paternal relations may refuse to name the child, hoping that it would die and take along with it the family shame. Sometimes, these differently abled children are abandoned at their grandparents’, to keep them out of the public eye, so as to maintain a good and healthy image in society.
But in all this the biggest person at risk here is the person or child living with this disability, so let us look at the different challenges these people face with the hope that we can brain storm on how to make it better once the challenges faced are explored.
Lack of
effective participation
There is limited involvement or no involvement of children living with disabilities, their parents or guardians in formulation, dissemination and implementation of the laws and policies that relate to them which leaves me thinking that there is alot of assumptions that are done on their behalf thus leaving a big void between what they could be facing and what they need.
This has, as a result, led to ignorance and ineffective implementation of the existing laws and policies for these children and their parents or guardians could enforce to cause inclusiveness.
Community
misconceptions and stigma
Community misconceptions and stigma remain associated with children living with disabilities and their homes. This leads to attitudes and behaviours of neglect, isolation, abuse and marginalisation of these children by communities and families leading to increased discrimination. These children are despised by even their peers in the societies they live in. Some parents have had and continue to have negative attitudes towards such children. It is not news that parents often hide their child(ren) living with a disability and deny them their rights to associate and socialise, thinking that they are totally helpless. Unfortunately, even communities view these children as objects of charity worthy of no existence.
Inferiority
complex
Because of their difficulty in socialising well with other children or people and because of their unique abilities, children living with disabilities always underestimate themselves in character and in their expression of those characters. They often think and believe that they do not fit in society, just like how other able-bodied children do. During infancy, you will often hear children asking their parents why they are not like their friends, especially when they reach an age where they can reason. This manifests in their self-pity, loss of self-esteem and failing to report human rights violations committed against them. The situation is worsened by service providers and the public who do not appreciate that to accord these children their rights is an obligation. Children living with disabilities, therefore, grow up with misery and lack social networking skills.
Hunger
It is a painful reality what children living with disabilities go through in their day-to-day lives. Inadequate nutrition at a young age prevents these children from developing properly both physically and cognitively. We also continue to see how poverty is almost inseparable from disability given that parents of these children spend a lot of their financial savings and resources trying to make these children as ‘normal’ as they believe they should have been born. Often, some lack money as a social background and cannot feed these children on balanced diets which can enable them to grow fast and strong despite their unique abilities.
Lack of
community mobilisation and advocacy
This is largely because of weak institutional frameworks because of lack of coordination between Government institutions and civil society organisations of persons living with disabilities. And unfortunately, it is the children and persons who miss out on protection and who have to manoeuvre on their own or with family to ease their lifestyles. So children and persons living with disabilities need advocates for their rights, inclusion and help which is the reason I decided to make camp here for this week.
How do you think we can make this narrative different? Please share in the comment section.
