Here we have just 1 page of Aubrees 12 page physical and cognitive assessment. The coloured blocks are things she has achieved, for a child to be recognised as functioning at a certain age, every block within the age range has to be coloured. Aubree is 4 and functions at an 8 month level, as you can see she’s no where near where neuro typical 4 year olds are.
And that’s okay!
It might look terribly sad, poor little child can’t do anything for herself, but it isn’t! None of the tests, assessments, rating scales or progress reports will ever be able to measure just how awesome a child is or how much joy, happiness and love they give. Oh sure Doctors will readily tell you everything your child has failed to learn, all the skills they are doomed to lose and everything they will never amount to.
What they don’t tell you is how tenacious these kids are. How strong. How exuberant. How wild. They won’t tell you how one small human who can’t speak will tell you they love you in a million different ways, nonverbal just means you have to listen with more than your ears. They’ll never tell you how much this child will humble you, how much love you will have for them.
It’s not all sunshine and flowers, and our dark days are pretty frigging dark. But its definitely not all doom and gloom either, and I figure if she can get through each day, I can to.
Calories, something people tend to avoid. A calorie is a unit of energy derived from food, it measures nutritional energy. You need a certain amount of calories per day for your body to function properly. Trying to get substantial calories into a child who is unable to eat properly is a battle and a constant worry. Luckily for us, Aubree is still able to eat orally, so I will do everything I can to make sure she enjoys food for as long as she is able.
Fighting with gastro-oesophageal reflux disease, aspiration and a weak swallow we have to be very careful and very precise in what we give her and what consistency. Food from jars or pre-puréed foods are just so lacking in proper flavour and those all important calories, so today I’ve made Cod, potatoes, parsley, broccoli, cauliflower, peas. Chicken, mushrooms, sweet potato, broccoli, thick Cornish clotted cream. Beef, spring onions, butternut squash, peas, potatoes. Lamb, mint sauce, sweet potatoes, cauliflower.. You get the jist (are you hungry yet?) All thickened and puréed into oblivion. It’s hard to keep her interested in food, after a while she gets bored of certain meals so we always have to add something new. I feel so proud when she happily scoffs a bowl full of purée. Hopefully she’ll enjoy this weeks meals!
To the special needs parent hiding in your bathroom, needing peace for just one minute.
To the special needs parent who is so tired you feel like you can’t function anymore and would do anything to lay down and get the rest you need.
To the special needs parent that is trying desperately to put those old jeans on because all you really wants is to look in the mirror and feel good about yourself.
To the special needs parent that doesn’t want to leave the house because life is just too much to handle right now.
To the special needs parent that feels alone, whether in a room by yourself or standing in a crowd.
You are enough.
You are important.
You are worthy.
In the end it will all be worth it. But for now it’s hard. And it’s hard for so many of us in many different ways. We don’t always talk about it, but it’s hard and you aren’t alone.
You are enough.
You are doing your best.
Those little eyes that look up at you, they think you are perfect. They think you are more than enough.
Those little hands that reach out to try to hold you, they think you are the strongest. They think you can conquer the world.
That little mouth eating the food you gave them, they think that you are the best because their belly is full.
You. Are. Amazing.