A Diary of a Special Needs Mum

My name is Stephanie…. In 2016 I became a Special Needs Mum. My son Oliver was born premature at 31 weeks weighing 2.1kg. He was 8 weeks early. Due to his condition at birth Oliver developed Cerebral Palsy. CP is a blanket term used to describe brain damage in infants. Oliver has Spastic CP which means he cannot control the movement in his muscles. Today Oliver is 1 and a half years old.

My hopes for this blog is for me to inspire, educate and put a smile on the faces of other parents in similar situations. You may not always appreciate my humor (many don’t) or agree with my thoughts/ideas, some are really ‘out there’ but take what you need and leave what you don’t.

Feeding Time at The Zoo

As many of you with CP or other Special Needs children know…. doctors visits, MRI’s CT scans, trips overseas are a walk in the park compared to…. feeding….. This is possibly one of the most challenging parts of our day, and one of the difficulties people around us know nothing about. I have agonized for over a year of textures, feeding positions, flavors, distraction techniques down to the point where I have to make sure we have the right colour spoon and bowl before Oliver will even think of opening his mouth.

Below is an outline of our feeding programme and some tips and advice for feeding your SN child.

THE IMPORTANCE OF NUTRITION FOR OUR SPECIAL NEEDS CHILDREN

‘’What goes in is what comes out” (not necessarily out of our bums)

When we talk about what comes out we are talking about what is “put out”

ENERGY

CONCENTRATION

MOTIVATION

ATTENTION

These are areas of weakness for our SN children. Our SN children require twice as much energy as a normal child to accomplish the same tasks. To give our children the best chance of success then diet should be just as important as therapy!

FOOD GROUPS

Natural Fat = energy and concentration

Protein = muscle building

Natural sugar = energy

Vegetables = ruffage (good poo’s)

Carbohydrates = lethargy, tiredness, constipation – BAD

Examples of foods high in protein/natural fats/ruffage/natural sugar

Avocado (this can be frozen too) natural fat and protein
Groundnuts (this can be bought in powder/crushed) natural fat and protein
Peanut Butter natural fat and protein
Yoghurt – plain or flavored protein
Eggs protein
Tuna/Chicken/Fish protein
Brown bread/rice ruffage
Broccoli ruffage and antioxidants
Kale/rape ruffage and antioxidants
Cabbage ruffage and antioxidants
Apples/Pears ruffage and natural sugars
Coconut Oil natural fat
Butter natural fat
Cream natural fat
Milk protein
Strawberries ruffage and natural sugars and antioxidants
Grapes natural sugars
Cheese natural fat

Feeding for CP Children

Buy a good blender, if finances allow a glass once is great and will last you a long time. A tip with blenders, as soon as you have finished using it rinse it out, otherwise you will end up scrubbing two hours later once the food has dried and become hard.

ALWAYS feed in a highchair, this is for two reasons, sitting upright is the correct posture for eating, it allows gravity to help the food down and will help avoid chocking, the other reason is that putting your child in the highchair tells them that it is food time and allows them to prepare for eating.

Take your time, force feeding a CP child is wrong and creates food aversions which are hard to correct. Eating should be enjoyable, get messy, its OK! Teach your child to feed themselves by wetting their fingers with food and guiding them into your child’s mouth.

If your child is a fussy eater, like mine. Get a toy involved to create distractions, a noisy toy is good.

Cooking for SN children does not have to be difficult, these children often have odd taste buds so don’t worry so much about taste, work on consistency. Adding butter/cream/yogurt to foods helps them to be ‘slimy’ and go down easier.

Keep the food simple – no more than 3 ingredients, any more is unnecessary and will not be appreciated. Season with salt.

Feel proud of the effort that you are making.

Also, you don’t have to make separate meals for your SN child, if you are cooking for the family, pick one ingredient, make a little extra and feed that to your SN child.

Sample meals:

Breakfast
Porridge with peanut butter
Scrambled egg with cheese
Toast with peanut butter
Yogurt with cream
Strawberries/bananas with cream
Yoghurt with peanut butter

Lunch
Avocado tuna and mayonnaise
Bread with peanut butter
Pears with cream (good for constipation)
Banana with cream
Boiled chicken with rice and mayo

Dinner
Broccoli and butter
Cabbage, onion and butter
Potato and butter
Carrots, onion and butter
Pasta/Lasagna (use cream for white sauce)
2 minute noodles
Mince (bolognaise sauce)
Butternut and butter

Snacks
Boiled eggs
Corn curls/soft crisps
Banana
Yoghurt

MILK – by two years old ideally you want to be on 2 bottles or less per day (morning and bedtime). Cows milk is fine but for extra nutrients add half cream or NIDO is good to mix with milk if your child has refused a meal, that way they get twice as much nutrients in the same volume.

Supplements
Multi vitamins
Daily probiotic (good to help regulate stomach digestion)
Iron (a lot of SN children, especially prem ones have iron deficiencies, use for 6 months)
Cod-liver oil/Omega 3 (good for brain development)

CP does not define me

5 facts about CP
1. Cerebral palsy is not an illness

Cerebral palsy is a condition caused by injury to the immature brain. The injury could be caused by an infection, an accident, lack of oxygen, problems at birth, or, in some cases, it may have a genetic link. However, there may be no obvious cause.

2. Cerebral palsy can not be cured

Cerebral palsy is permanent. What can change is the effects this brain damage has on individuals. Treatments and therapies can improve muscle tone and practical ability.

3.Cerebral palsy describes the condition

Terms such as ‘spasticity’, ‘diplegia’ and ‘hemiplegia’ refer to how the person’s body is affected. Spasticity means that muscles are very tight and can be painful and spasm. Diplegia means that two limbs (normally the legs) are affected. Hemiplegia means one side of the body is affected.

4.Cerebral palsy is primarily physical

Depending on the location and severity of the damage to the brain, some people with cerebral palsy will have learning, cognitive or sensory impairments, but there are also lots of people who have above average intelligence, go to university and are employed in a variety of roles.

5. People do not die of cerebral palsy

The effects of cerebral palsy on someone’s body may cause further medical issues. For example, if they are profoundly affected and unable to maintain an upright sitting and standing posture, therefore using a wheelchair, they may be putting increased pressure on their heart and lungs. In general, and with the right support, people with cerebral palsy have the same life expectancy as anyone else.

Yes, Oliver has CP but he is not CP. He is a boy, 1.5 years old, he loves to be tickled, he loves to fart, he loves to be dirty – just like any other little boy. CP does not define Oliver. Oliver defines himself.