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Children with disabilities

Nutrition

Make mealtime easier for your differently abled child

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.

Follow me to get yourself or a loved one a copy.

See you next Wednesday

 

Lifestyle

Parents & Guardians of children living with disabilities

Yesterday we looked at the challenges that persons with disabilities face . We got to appreciate that we as the larger community may not be doing enough to support these persons, more so the children to cope with the world in the best way possible. But I want to ask who advocates for the parents and guardians of persons living with disabilities who share this with their children on a daily basis?

It is very common for parents to cycle between one emotion to another, depending on the seriousness of the disability, their coping skills, and their support system. Some reactions we see that parents and or guardians of children living with disabilities go through include the following;

  • Denial

Denial is refusing to acknowledge or accept that your child has a disability. This is usually the first reaction to finding out about one’s child’s disability or deformity. Every parent faced with this challenge will first blame themselves for their child’s disability. Some pregnant women even become very depressed about carrying a child with a disability and the thoughts of not giving birth to these children or allow the children to live increase. This, unfortunately, is where some doctors table the absurd option of abortion.

When a woman is in denial of carrying a child who is or may be deformed, she also carries with herself the other probability that the doctor who discovered the disability was wrong about their prognosis of the child. As the pregnancy progresses to term, she may even still be in denial of being pregnant with a child with a deformity or possibility of one until she gives birth, and the child exhibits the signs of deformity!

Some parents get stuck at this stage and there is only one person at a loss here: the child. However, if one finds themselves in this situation, the only way to go past this stage is to discover why they are finding such a hard time accepting the news and working through all the emotions. Eventually, hard as it may seem, sometimes times with the help of a counsellor, they come to terms with it, know that their child is struggling (or will) for a reason or a while, will struggle through some life’s activities; and then equip themselves with the best tools on how to react to the changes that will exhibit as the child grows.  

  • Anger

Anger and denial usually run side by side. Parents who receive the news of a deformity of their child become angry: always questioning why it had to be them. They blame themselves for not having done enough or not doing enough to guarantee a healthy life for their children. When the stress becomes too much, it boils into anger. This anger can be shown outwardly in form of rage or they become withdrawn because of the immense feelings of guilt and shame. Displacement of anger is one of the common occurrences we see among these parents. It expresses itself through verbal attacks on anyone who may blame the parents for their ‘unfortunate’ circumstance. It is very sad to note that during such a time, many marriages become strained and regrettably, some even result in divorce.

In as much as anger is normal and purely understandable as a way of acknowledging the injustice on your child, one should find some balance not to be carried away by this emotion. Instead, channel this emotion into advocacy for children living with disabilities’ rights, and becoming a motivation to other parents who are yet to face the same experience. Motivation should also be the source through which you become the number one advocate for your child. This may not happen naturally, however, but it does eventually. It may require you to join or form support groups.

  • Fear

The Advanced Learner’s Dictionary defines fear as an unpleasant emotion caused by the threat of danger, pain or harm. Among parents of children living with disabilities, the biggest fear arises from the uncertainty of what to expect in future as their children grow. The anxiety of how to protect one’s child who may not easily protect himself or herself sets in. It burdens a parent to know that they are their child’s only defense and protection and when they are away from the child, despite the child having grown into an adult, the child will be vulnerable to attack, mockery, ridicule and difficulty in living. Parents will imagine society’s rejections towards their children and the fear may yield them health problems, thus shortening their own lifespans.

This stage comes along with bargain. Parents begin the unending journey of hoping that perhaps they will find a permanent cure for their child(ren) and return normalcy to the family. They often involve prayer or any higher power seeking for some miracle. “Just let my child be like other children and I will do everything you want”, is an example of what that prayer may look like.

Recognising the special ability that your child has is one of the best ways to calm your fears: because, beyond the therapies and endless hospital check-ins, there is a something special in your differently abled child.

  • Grief

There is such a tremendous sense of loss that parents encounter when they learn of their children’s disability. This feeling is normal. When parents learn of such news about their child, they almost give up all those dreams they had for their child and this is so heartbreaking. Just like the rest of the emotions above, grief is another form of emotion that parents have to allow themselves to go through. It is best overcome when one gets a support group to journey with.

  • Guilt and depression

This is another emotion that I hinted on in the beginning, which parents feel and will feel in life throughout the child’s life. This, however, falls more on the mothers who often feel guilty about some wrongdoing they did for their child to be born that way. The blame on oneself can be so grave that it leads to depression.

Taking about depression, parents face continuous challenges ranging from social isolation, financial strain, outright exhaustion, difficulty in finding resources, feelings of confusion, etc. Over time, if these feelings remain and the person does not find relief, parents may fall into a deeper depression which manifests in form of insomnia, fatigue, low self-esteem, social isolation, changes in appetite, etc.

  • Acceptance

From the above stages of emotions, I prefer calling this stage the happy phase. At this stage, parents begin to dream again. They have gone through lots of emotions and have tasted the grief and fear; and they have processed them well enough to even start seeing beautiful attributes in their child(ren).

They will also be involved wholly in their children’s activities; they have fully grasped their communication traits and can easily understand their emotions. Life becomes as normal as it can get because the parents, the child living with the disability and their other siblings understand how things go about in and out of their homes.

So the next time you meet a parent or guardian of a child living with a disability, no that there is an unseen battle of emotions going on within that the world may never get to know about, and if you won’t make it easier for them, do not say anything to them. We are the support that these parents need to stay afloat.

To the parents that go through this daily we are sorry for not understanding where you are coming from, for the unkind words we may have said to your children forgive us. You are doing an amazing job already and my prayer is that we may eventually appreciate your efforts and be empathetic enough to make your lives little easier. May God bless you and increase your resolve to looking after these beautiful solves