Our sons psychologist told me that parenting a child with autism is similar to parenting 5 children! She said “Simone, you have the equivalent of 15 children!" And yes, I'd believe that one!
What is going through my head at any given time is just mind blowing, and none of it is me over-thinking or exaggerating anything.
There’s just so much to think about.
Preparing for the NDIS planning meeting is excruciating and heart wrenching. Then needing a review of that plan, because it was barely enough for your child, adding more pressure.
The day to day therapy sessions, with 3 kids, means that there seems to be therapy every day, and it’s not only the physical aspect of getting them to therapy, it's implementing it into the home. Most of the time, I just pile notes on top of notes on top of notes. Am I following up on what is covered in session? Most likely no, because I can’t fit it in the day. But I get to it eventually.
We must prepare the children visually, using social stories and weekly planners, we also need to help them with self regulation, using the engine speed and various calm down tools.
They may not be able to do this on their own, and without our support, I could have 3 screaming kids on my hands.
Always trying to get enough funding for respite help, I’ve been told “the squeaky wheel gets the grease” if you ask and ask and ask, you might get help. If you quietly suffer, you get nothing. I spend a large amount of my time seeking help, especially for the school holidays.
Cooking has become a chore, it is a very unforgiving task trying to keep them healthy because what we need to do to get vegetables into them seems impossible. If something healthy is eaten, its a huge celebration in our house, all that work has paid off!
Sensory sensitivities can be a huge stress on the whole family. Bath time is so painful for our daughter, she described the feeling of removing clothes, bathing and getting dressed as needles going into her skin. Through the whole process, the poor thing is screaming and throwing punches and kicks to anyone close by.
Having these children, as much as we wholeheartedly adore them, is such an unforgivingly difficult and isolating life.
Good thing about me is I am able to ask for help, I’m never shy in asking.
I know when I not coping, my hands start to shake, my breathing is shallow and I am just furious with the children.
These moments of not coping are rare and short lived.
I used to dive into a block of chocolate or a glass of wine, they were "there for me" and it felt like a reassuring hug.
I have FAR better strategies these days, and I believe I’m a far better mother and person for it:
- Ask for help, from friends, family and respite services, you can even call them up and say the you’re close to breaking point. Say if you don’t get assistance then you may well break.
- Regular exercise, my favourite is Zumba! At Zumba, I have my “brain break” for that one hour session, I am so focused on the music, the steps, trying to keep up, that theres no room in my brain for shopping lists, NDIS, social stories, etc. of course, the physical aspect of Zumba is just delightful!! All that sweaty movement makes me incredibly happy! I love the “high” I get when I’ve had my Zumba session, I can take on anything the kids throw at me.
- Appreciate everything! Even if the day was 99% difficult but you had one perfect and magical moment, grab it!! Own it!! Use it to get you through the tough times.
- Surround yourself with those that are there for you, I’m incredibly lucky to have such incredibly supportive people around me, and I’m there for them too.
- Write everything down, get it out of your head, it’s too much to hold it all in, it will drive you mad. Write it down.
- Don’t sweat the small stuff, if you’ve got special needs children, you probably already don’t even notice the small worries, because we’ve got bigger things to worry about. If we can’t change it, don’t worry about it.
- And my final point just try to do one thing each day if you can’t do it today, add it to tomorrows list.
Each day I’ve chipped through the mountain of jobs, and one bit at a time, look how much I have achieved!
2 years ago, I wanted to start this little business and it seemed impossible, back then, I barely had the luxury of a shower! Now, with the experiences I’ve had, I can now help others through similar pathways.
Take my hand, I'll help you through this.