“" If you do what you have always done,”
you will get what you have always got " - Henry Ford
This is a brief story of how I became ok with my autistic son’s diagnosis.
Because I wasn’t always ok with it.
I have two autistic sons. They are beautiful boys with lots of potential.
And as their mother, it is my job to help them reach it.
**This post was originally published in May 2013. It contains ableist thoughts. I have left them here as they show my journey. A journey that I believe that all parents with autistic children must take at their own pace.**
This puts so much pressure on mothers today. There are so many possible ways to reach that end destination. There is a lot of judgement over what is seen to be the ‘right’ way and the ‘wrong’ way. As difficult as it is, we need to step back and simply say that we are different. Not better. Not worse. Different. And differences should be encouraged.
Our second son was diagnosed with autism when he was 2 years and 8 months old. He was a difficult baby and a horrible toddler. I never knew how to handle him. I always knew that he was different, but no one else could see it. Or at least, they were unable to talk to me about it. When criticising the child, there is a risk that you are criticising the mother.
I felt relieved when Second was diagnosed with Autism. It was confirmation that there was indeed something wrong. Listen to your instinct, people! Plus it allowed us to access early intervention.
And so the long road of therapies started.
We did a combination of speech therapy, occupational therapy, dance group, music therapy, social groups tailored for autistic children and attended a special developmental school.
As parents, we always knew Second was intelligent. And, we believe that this has helped his development. At the time of diagnoses, he was completely non-verbal. A couple of months later, within a week of starting speech therapy, Second said his first word. It was ‘finished’ and absolutely music to my ears.
Second’s development has been a long, weary battle. His every improvement has been months of work behind the scene. And to keep every small gain, we must continue to practice his skills so that he doesn’t regress again. It breaks my heart every time he regresses.
So when my third son began to show signs of Autism, I simultaneously both ignored it and throw myself crazily into more therapies within the home. I didn’t want to have two children on the Autism Spectrum. Who does? No one wants a harder road for their child, and ASD is certainly a hard road. For us, definitely. And also for the child it is excruciatingly painful.
These children do not understand so many basic rules of human socialisation. My sons end up so frustrated will being unable to follow a conversation, at not understanding body language, at not being sure of what facial expression is most appropriate to use. On top of that, my autistic sons are also aware of this difference between themselves and others, and so are often angry that these simple behaviours do not come to them as easily as to their friends.
I first took Third for his ASD diagnosis when he was 18 months old. My paediatrician told me not to worry, it was simply copied behaviour. I knew inside that this wasn’t true. I know my children. But at this time I wasn’t strong enough to fight for it. I felt capable of meeting the needs of all my children without a offical diagnosis. I feel it is very important that as mothers we do what is best for us, when we are strong and ready. If the mum cannot cope, no one can.
However, when these two boys were aged 3 and 4, my world as a stay at home mum suddenly got soooooo much harder. The elder boy had started at a mainstream kinder program and was feeling very anxious under the weight of expectations on him. Second’s coping mechanism has always been to try his hardest in front of others and then come home and meltdown. Mum’s always get the best behaviour! Added to this, Third was contantly butting heads with Second. It was horrible. Sibling rivalry, gone turbo! Can you imagine two children with poor to no language skills having an argument? It very quickly turns physical.
I became drained under the pressure to continue to help my children to thrive. All my children, not just my two autistics. I was literally running all over the house trying to teach my children, keep them happy and separated from their siblings. I had lots of play pens organised around the house! But of course, children do not like to be left in a play pen. I would be leaving one child to pacify anothers screams, only to leave the first in tears.
Emotionally, it was draining.
Physically, it was tiring.
Finanially, keeping up all our therapies, was hard work.
So, I collapsed under the weight. It took me almost 18 months to begin to climb out of that hole.
I did this by trying to see that what I am doing is enough. This is hard. I am currently tearing up writing these words, and the pause, before I did was loooooong!
I am trying to breathe. To stay calm. To be content.
Living within the world of an Autism Spectrum Disorder can be isolating and demanding.
To survive, I think you need to be confident that you are doing your best, that you love your child and that it is enough.
With an ASD, as with many other developmental diagnosis, it is difficult to fight your way through the mountain of information around what you should be doing. Sometimes it is easy to believe that you are a ‘bad’ parent for not allowing you child to participate in a certain therapy, or for not going down some other alternative path.
I am trying to listen to all those well meaning people in my life telling me how wonderful my children are, how well they are doing. I need this ego boost right now. I need to feel confident once again in my parenting. It is a slow journey. One perhaps without any definitive ending, yet I am going forward.
Just keep swimming.
My third son was diagnosed with autism at 4 years and 8 months. And it has been such a relief. I WAS RIGHT. I wanted to shout it from the roof tops, but I settled for posting it on Facebook! And with his official diagnosis, we can again move forward. We can access help, funding, support and therapy. And that is what is best for Third. Already he is improving, so amazing.
And you know what? I think I am ok, too.
here’s to contentment
Don’t get too excited. And this statement is as much for me, as it is for you. I’m practicing here. I’m aiming to write more. I’m aiming to give myself the permission I need to sit down and focus on my words. On me. On my voice and purpose.
The plan is to have one day a week off from the house and the children and the homeschooling, and to go out, just Baby Boy, laptop and I. We’ll see how we go. How I go.
I’m hopeful. Yet hesitant. I don’t want my expectations to run away and lead to disappointment. That’s not helpful.
I want to reconnect with me. With my thoughts. With my dreams. And start making tiny tentative steps forward again, turning these dreams for me and my writing into plans.
I’ve got this.
Thank you for your patience. For choosing to spend time with me here. You’re the best!!
Sarah xxRead More