14 things that become normal when you have a special needs child

Things that, if you think about them, are actually quite abnormal, become normal when you have a special needs child. In our case with our daughter, I didn’t really notice it happening. However, abnormal has become my new normal...

What became normal to me:

1. A hole in my kid’s belly
That’s where my daughter's feeding tube is located. A tiny balloon on the inside, and a small cap on the outside. I have access to my child’s stomach 24/7. And when there is too much air in there, she doesn’t even need to burp, I ‘just’ take the cap off and let it out!

2. Strangers in my house
Luckily, they’re not strangers anymore. In Holland there are paediatric nurses who specialise in giving medical care at home. We had help from a few of them on a weekly basis. My oldest daughter used to call them ‘our babysitters’. She thought they visited all families with a baby…

3. Analysing the monitor instead of looking at my child
Credit: Someecards.com
When your kid uses medical appliances such as an enteral feeding pump or a cardiac / oxygen monitor, you learn to trust those devices. When my little girl is sleeping I don’t even walk over to her bed anymore. Instead, I analyse the monitor, and I know exactly when she’s in a deep sleep or when she might be in pain or something. I even base my decisions on what I see: “Looking at her heartrate she’s in a lot of pain, so we’d better give that paracetamol.”

4. Providing the necessary medical treatment
This can be anything from placing a urine collection bag, giving medication to inserting an NG tube (nasogastric feeding tube). I have turned into a paediatric nurse myself!

5. Beeps
Beeps do not scare me anymore. I have come to the point where I don’t even hurry to stop the oven from beeping. However, I often do believe that I hear a beep coming from somewhere…

6. Having oral airways lying around the house, just in case…
Necessary, given my daughter’s respiratory problems. We know how to perform CPR and how to insert the oral airways. Luckily I have never needed to use them, and I hope, with all my heart, it stays that way.

7. Becoming MacGyver
When you have a special needs child, you need to become creative and inventive. In short: you become MacGyver! I don’t use my make-up remover for my eyes and I don’t use the cornflour to cook. Instead I use my make-up remover to remove the residue of my daughter’s bandages. The cornflour is on the changing table to work miracles on her little bottom when needed. And that for only 63 cents!

8. The white bus
I have seen them driving around before, but I never thought that one day one might stop at our house coming to pick up my little girl. Now I am okay with it, but it took me some time to get used to ‘the bus’.

9. Changing diapers is like overcoming an obstacle course
I have learnt to change my daughter’s diaper while she was hooked up to all sorts of wires and devices. The record number I don’t even know, more than 10 wires in any case. Good luck trying to put your nappy rash cream in all the right places!

10. Playtime becomes therapy time
Nothing comes naturally to special needs children. Every tiny things take a lot of practice. So that’s what you do: practice, practice, practice. And you think consciously about every single interaction. So, for me, developing and stimulating new skills or offering new material to play with, loses its playfulness and becomes therapy.

11. Going somewhere looks like you are migrating
Something that is recognizable for any parent, I think. One way or another, your car always ends up being chockfull of kids’ stuff if you go somewhere. My little girl needs a very large overnight bag for her food, syringes, medication and for her spare feeding tube. No wonder we’re always late!

12. All the medical terminology I use every day
Comes in handy for Scrabble though.

13. That my little one is in therapy
She has had more kinds of therapy in her first 4 years of life, than I have had in the last 36…

14. That I am the nurse, therapist, advocate and spokesperson for my child
With love!

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