Almost 4 years since my last blogpost… it’s been a long time and a lot has changed. We’ve moved a couple of times, I’ve lost about 23 kg and we’ve gained a stack of diagnoses.
So now I am officially a special needs mum who has had to learn loads about autism, genderdysphoria, myalgic encephalomyelitis (ME), kyphoscoliosis, asthma and hypermobility.
So far, it hasn’t been easy. We are still learning of course and that won’t stop because all of it is ongoing. I guess it’s not so hard to understand that my life has been rather hectic while we are getting quite knowledgable on the different conditions.
Being a special needs mum
This morning the Dutch radio channel on my phone was playing ‘Je hoeft het niet alleen te doen’. This is Dutch for ‘you don’t have to do it on your own’…
Every time I hear that song or others with a similar message I tear up these days.
No, I don’t have to do it on my own… theoretically that is.
I don’t have to do it on my own, but that’s easier said than done if you are seriously lacking a network nearby that you can rely on.
A friend posted a blogpost (this one) on Facebook yesterday and it is so true that being a special needs mum or dad is a lonely and isolated existence. And it is even more true for those who have multiple special needs kids and/or a child with a special need that is rarer and/or less (or simply not at all) understood.
Over the years I’ve surrounded myself with people I thought are most likely to understand our struggles, but I’ve learned that people will never fully understand what we are going through. And some are not even willing to try and understand.
Every special needs child is different and even when there is the same diagnosis on paper they will still differ immensely because of course they are, besides their diagnosis, unique individuals. Also, most disabilities, symptoms or characteristics can vary greatly and there are of course cases where there is more than one special need and they are not always diagnosed.
Do you want to be supportive?
Then listening to the parent, taking it seriously and believing what is said is a good start.
Dealing with ‘good intentions’ is another struggle. When people think they are helpful by suggesting ‘new’ ways to deal with your child and you either have tried those things already or you just know it won’t work.
It may come across as being unthankful or dismissive and you might even think that your help is not appreciated, but sometimes there just isn’t headspace for justifications and explanations. Most (if not all) special needs parents have become the experts in their child’s special needs field and have read or heard it all before. They just want you to understand that they want to be heard and that they don’t need you to solve anything to be supportive of them.
Don’t get me wrong, brainstorming with people who genuinely care and are in the know (because they’ve listened about the issues in the past) can be very helpful, because that might produce new ideas. However, talking to people who think they’ve got the answer is not.
It can leave the special needs parent feel like a failure
We know we are doing the best we can, with the information that we have and within our own ability, it never feels enough. And knowing that is already really distressing.
Most of the time simply listening and acknowledging the struggles is enough.