I am a young, first time mama and when I fell pregnant at the age of eighteen, I didn’t know the first thing about looking after a baby, let alone with the added hindrance of my disability. It’s not easy caring for a baby, or even a toddler, as well as yourself. When you have a disability such as Epilepsy too, it makes it ten times harder.
I had to learn everything as I was going, from what a baby wants and needs right up to, how to do those things if it was an ‘E day’. If, like me, you are still in the midst of learning to juggle this gorgeous, adorable new gremlin in your life as well as master and tame your seizures then I hope this post will help you. This is for those in search of tips, advice or just straight forward reassurance – believe me when I say, you are not the first epileptic to have dropped your child.
Looking after yourself
It is really easy to loose track of time when you are looking after a baby or toddler. But, it is really important to make sure you look after yourself too, and try to avoid seizure triggers. Here are a few main ones to remember –
- Don’t forget to the take your medication. On time! You could make sure of this by setting alarms on your phone or even a pill box set somewhere high but visible.
- Not getting enough sleep. This can be easily solved by sharing the night feeds. I have been lucky in the fact that my partner has done most night feeds since the day O was born and this has helped immensely for my Epilepsy.
- Missing meals. Try not to miss food, all medication should be taken with food. You could try doing some meal prep, by making big meals and freezing, there is always something easily accessible on an ‘E day’.
10 ways to Keep your baby/young child safe
There are many ways to help keep you little one safe, most are just small adjustments and changes needed in everyday life. *please note, no way is completely safe, nor will it be suitable for everyone*
- Dress and change on the floor instead of on a changing table, this keeps them safe if they role and you are currently occupied by annoying brain issues.
- Top and tail them, rather than bathing, especially if you are by yourself. This is where you wash them with water from a shallow bowl instead of in a bath. There is less chance of drowning this way.
- One of the best purchases I ever got when O was small was a wrist strap for his pushchair. By no means at all are these fool proof, if you were to have a GM you would probably find yourself tipping the pushchair, but my main seizures are Myoclonics, so this worked wonders when my hands decided they no longer wanted to hold the handles.
- Use, either, a pushchair or carrier to move the baby around or to cuddle them. Again, these aren’t fool proof, but they are safer then carrying freely and dropping you little one on to their soft head. *Do not feel as though you are the only one to have done this. In all honestly, I have lost count of how many times I have dropped O, from standing or even sitting. No damage has ever been done, but it sure as hell scares you both!*
- Whether you are breastfeeding or bottle feeding, avoid sitting on chairs. The floor is much safer and closer for the baby to tumble to if you are sat on it in the first place. Set up a cushioned corner where you are safe and comfortable. I did this and used it for feeding and for play. It became a regularly used corner until I started using my giant, fluffy floor cushion in it’s place. Not only was it safe, but it felt fun and playful too.
- My favourite item I ever brought for O, would have to be the ‘Fisher Price Jumperoo’. Smothered in green leaves and jungle themes it was a twisting, spinning circle of fun for him. He loved it, I loved it and Richard knew he was safe in it.Rich worked evenings and nights, see, being the cashier and ticket seller at the local Cinema ‘Theatre Gwaun’ (A cosy, old fashioned little venue which held films and live performances.) because of this I had to have O quite a lot on my own. Mostly my JME played up in the mornings but on the odd occasion it would like to throw me off course and come alive in the evenings. The times this happened the Jumperoo was a life saver. O would spend, literally, hours at a time in this amazing contraption. Bouncing, and laughing away, and once he got the hang of it, he used to spin and spin and spin. Just watching him made me dizzy, god knows how he felt. But he smiled and enjoyed himself. It was an acceptable way for me to amuse and entertain him without having to worry about dropping him. I mean here I am telling you about all this, but at the end of the day he is my baby boy, my first born at that too. At times I got so down watching him having fun on his own, or with his daddy. As lovely as it was, I couldn’t help but feel left out and useless. I couldn’t help but hate myself for the lack of cuddles I could give my son.
- If you are like me, and find yourselves confused and lost after a seizure, a good tip I found was to label things! label the milk, with the amount of scoops clearly written on. Stick notes on a cupboard door, with feeding times and how to make the milk on. Maybe even, stick a not somewhere you see constantly, reminding you to FEED your little one. I know this sounds condescending and offensive, I mean, how could you forget to feed your own child. Believe me, it can and might happen and if you are home alone, that wouldn’t be very good.
- Stairs! I hate them. I lived in a bungalow for the first year of O’s life, but a really useful tip I found out was to carry the gremlin up and down in a car seat. Obviously, if you can, get someone else to carry them. Period. However this isn’t always an option, so try the car seat trick. they are designed to protect even after hits, bumps and tumbles so they will create much more protection than just your little one tumbling with nothing for a shield.
- If you usually fall asleep after a seizure, as much as it may pain you, maybe ask a trustworthy friend or family member to babysit for a few hours. That sleep time to rejuvenate yourself could be the difference between safety and an accident later on in the day. I know I’ve had mishaps when I haven’t taken the time needed to feel semi human again after a seizure.
- NEVER leave the keys in a locked door, or put the chain on! if you are home alone and have a seizure, you will more than likely need some form of help, whether it be a neighbour, and ambulance, family, friends or your partner home early. If you have the chain on or keys left in the locked door, anyone with access to your house wont be able to get in and help. Naturally this can be a big issue. I am one of those people who used to put the chain on, especially now my gremlin 2 year old thinks its funny to open the door all the time (I lock it and remove the keys), but after a bad day of seizures with him home, I realised how much of a struggle it was to get up and remove it for my partner to be able to enter the house.
Teaching your little one about seizures and First Aid!
I haven’t quite reached this stage with O yet, but we have not stopped thinking about how we will tackle this issue. It is so important that O will not feel like he is responsible for me, I am the one that is supposed to be caring for him, not vice versa. Our main priority for O to learn will be how to contact a responsible adult. As soon as he is old enough and capable of conversing we will be teaching him to use a phone.
Many phones have a speed dial option, which will make it easier for O to get in contact with the needed adult.
Once O is old enough to understand properly, we will be sitting him down and explaining to him, what is wrong with mama and how he can help when it is an ‘E day’. In the nicest possible way, children are kind of like dogs with their sixth sense, O is already aware when ‘mama is having an E day’ and he tries his best to look after me, whether he behaves better than usual or pulls the ginormous, white, fluffy blanket over my lap to keep me warm. My gremlin is my little star.
I will be adding more information as I find out about them and think of them in regards to safety. My next post will be based on being outside with your little ones, what appliances are recommended and the reasons why.
I hope this post has been useful to some of you out there, if not, then at least interesting to read. Please share this post to make mamas and others aware of the risks and solutions.