In this house, I know that I have an N.T. (or neurologically typically wired brain).
My children however have brains that are wired very differently.
They have autism and their brains process everything in a very different way to NT people.
I can only write about how my family copes with Autism- I understand that our family’s experiences are probably very different to another family with the same diagnoses so I am by no means generalizing here, just telling my family’s story and sharing how I see things on a day to day basis.
Because I live with autism 24/7, 365 days a year, it’s almost impossible for me to not notice the affects that it has on family life.
As I have written before, when I first received Harely’s diagnosis, there was a period of mourning that came in conjunction with a huge feeling of relief. Relief that it wasn’t something that I had failed to see or do with him that had made him impossible to deal with, but an explanation for why I had so much trouble getting through to my child in the first place.
I did however have a lot of unanswered questions and emotions that were all a part of trying to understand what caused the disorder. I constantly asked myself ”Is this my fault?” and wondered if I could have done something to prevent this. But now I’ve learnt that this playing this “blame-game” is normal in these circumstances even though I was doing myself an injustice by playing it.
Still today, I feel incredible guilt and grief over having these children that I love and adore , while knowing that they will suffer a lifelong dis-order. I’m forever worrying about what others will think. I still feel massively inadequate at times and overwhelmed by the huge expectations put on me.
I know that sometimes my daughter Ella gets embarrassed by her brother’s public meltdowns and she gets annoyed with the boys because they require so much of my time and patience so there’s not a lot left for her. She has told me that she wishes that she could just have “normal” brothers so she didn’t have to deal with always being on the receiving end of their emotional outbursts.
My husband finds it difficult because we aren’t able to enjoy family weekends and holidays in the same way that other families are. Sure we can still do all these things , but the preparation and organising often seems like too much hard work for such a little result so more often than not we avoid them altogether.
It’s well known that anxiety and depression can sometimes go hand in hand with autism spectrum disorders in those individuals that are diagnosed , but there is very little literature written about the effects of AS on family life. Both hubby and I have at separate times suffered depression. It is debilitating and awkward. The parents of AS children are just as susceptible to anxiety disorders as their children are and for different reasons- but this is not commomnly spoken about amongst autism forums.
For me as a mother, it’s been an uphill battle to wake up and get on with my day knowing that the tiniest thing can throw the day into absolute turmoil and you have to walk on eggshells to keep the peace.
There is also a lot of anxiety and depression that are closely related to the lack of sleep that often affects families living with autism. When your child (ren) are awake every night – they are sleep deprived. BUT SO ARE WE!
And everyone knows that when you’re extremely tired, it’s hard to cope with even the simplest things let alone major meltdowns and the like.
All of the people in my son’s lives on a professional level are always teaching me ways to make their lives smoother and lessen their anxiety but all of these methods are time consuming and expensive and seem to raise my anxiety levels in the process.
I also have trouble dealing with the discipline side of AS. I’ve been taught over and over again to encourage good behaviour and ignore the bad but the family still seems to revolve around the boys. I get tripped up on this a lot because I hate to feel like my kids are in control.
I have had people ask me why I blog and spend “so much time” on the computer.
Well I think that it is all subjective as to how much is “too much” time but my answer to that is that I need to write for a release. It doesn’t matter if no-one reads it. This is something that I need to do lest I go crazy!
I need to make it known that I am doing my absolute best for my kids and always looking for new ideas to better my family and to grow personally. BUT it isn’t easy!
A lot of AS mothers write about how hard it is to parent these precious children but I want to write that it’s also hard to LIVE with them as well!
From my NT perspective, there is SO much focus on how we can better accommodate these children with AS but not a lot of support for the family unless you actively seek it out yourself.
But just like all parents. Our children are what drive us to be better people and we will continue to put them first even at our own expense.