Being a parent is hard. Whether you’re agonising over how many baths per week is the right amount, or even questioning whether giving your toddler crisps with lunch is acceptable, it’s almost impossible to always feel like you’re doing it right. Raising children with different need shakes this worry up a bit and adds an additional element to the anxiety.
When you become a parent, you don’t expect to have anything other than the newborn cuddles and new parent sleep deprived brain fog. But what happens when the sleep deprived brain fog isn’t the only thing you have to contend with?
I’ve learned a lot from the last 2 years… From the advice given by well meaning friends who really have no idea, right through to the personal changes I’ve had to make to survive the journey. Here are 5 things no one tells you about raising children with different needs.
It is isolating
Since the diagnosis, I’ve spent a lot of time joining online groups relating to my children’s needs. Before I found them, I felt very isolated. I had family and friends but I still felt like we were the only family in the world, ever, to experience what we were experiencing. It helped so much to find other families with the same diagnosis who knew, without being told, how we were feeling.
Google is your best friend and your worst enemy
This isn’t strictly just when you’re raising a child with different needs. Dr. Google is not a qualified doctor. I googled every symptom Enfys had. It steered me in the right direction on some things but also terrified the hell out of me on others. Google helped me spot the signs of heart failure but also told me far more information than I needed to know at the time. I didn’t want to know that heart failure can lead to death (I mean it goes without saying but reading it hit me like a ton of bricks). It also only seemed to give me worst case scenarios, never the middle ground.
However, Google has been very useful in giving me ideas to switch things up when something isn’t working.
Sometimes, you’ve just got to wing it
What works sometimes just stops working. There is no rhyme nor reason as to why is stops working. It just doesn’t work anymore. One day Enfys will love sausages, the next she will throw them all on the floor one by one like they are poison. (She has undiagnosed sensory issues with food.) There are loads of other situations I’ve had to wing it in, but I can’t for the life of me think of them now. At the time they are huge but now they are obviously quite insignificant.
Never take anything for granted
You know that shopping trip you went on with your little darlings that ended in disaster? You see, that’s pretty much how anything can go… a trip to the Doctors, a visit to the hospital, a day out. You can’t just assume that a day out will be a pleasant experience for everyone with a child with different needs.
You also can’t guarantee your snot-free child will be snot-free this evening, let alone tomorrow. I can’t plan anything too far in advance. I do, in the hope it will be fine but often bugs take hold and I’m forced to cancel plans and appointments.
Life will never be the same again
There are some days when I long for the quiet life I had before. When it didn’t feel like all I did was flit from appointment to appointment. Planning when I could potentially fit in a doctor’s appointment for myself or when I could book the children a routine appointment at the dentist.
There are some days when I long for a more innocent time. When medical jargon meant next to nothing to me and Noah’s Ark meant a day out at a farm park not the only children’s hospital in Wales.
There are some days when I just need a damn good cry… A good cry over the journey we’ve been on and what we have now. The tears are tears of frustration, guilt, sadness and, most of all, happiness. I love the Enfys we have… she’s exactly how she is meant to be. She fits into our family perfectly.
Despite this, there’s nothing I would change. I often think I would be thoroughly bored if it weren’t for Enfys. She’s excellent at keeping me on my toes.