Finding your parenting tribe, can be difficult. Let’s me honest, you only have to go on to social media for a few moments and feel like a failure. There are so many images of perfect parenting and “how-to’s”, it is exhausting. I often look at those perfect parenting posts and feel guilt and shame, wondering, why can’t I be as a good a parent for my own little puddins when I love them so much.
I realise now, doing my best is more than good enough. I have learned that lesson thanks to the tribe of incredible parents I call my friends.
When you become a parent to children who think and learn differently, you are unknowingly initiated into an incredible community, where you realise very quickly, you want to be.
Parents just like you who are raising autistic children, children who are neurodivergent, who one day collectively will change the world.
Talking to parents everyday through my socials I realise as parents we have a lot in common. Not only are we on the same road, supporting our autistic children, but also we are learning as much as we can, so we can be their advocates, teachers and therapists. We do as much as we can because we believe in our incredible children.
Parenting is as rewarding as it is exhausting. Some of the common experiences of parents raising autistic children have been:
We feel incredible guilt.
We worry we could be doing more all the time. I lay awake at night trying to make mental notes of what I need to do better, what I need to do more of. Goading myself for my perceived failures as a parent. I know the reality is that I am not to blame for what I cannot do, but the guilt remains. I always have this cloud of guilt hanging over me that I am not doing enough for Conor or my other children. I should be doing more therapy with Conor, Jack and Max. I could be more encouraging, I could spend more time with them. I could balance my time better between all my children. I should do this/that better. I feel terrible guilt that I did not realise from the moment he was born that Conor was autistic, I wish I had the knowledge back then that I do now. I don’t think I will ever shake that guilt in particular.
We want to outlive our autistic children.
I have this dreadful fear/anxiety of what ifs/what will happen when I have gone from this world. What if Conor is unable to live an independent life? What if he grows into an adult and other people cannot understand his communications? I generally try to take one day at a time as the thought of the future overwhelms me but if I could I would see Conor grow into an old happy man.
We grieve for the childhood our children were “supposed” to have.
When you are starting out post autism identification, unfortunately you end up being surrounded by so much negativity about autism and that it has “stolen” your child you were supposed to have. That somewhere deep inside your real child is there, waiting to be found. I know that is how I felt all those years ago, for a time misguided by misinformed sources of information. I thankfully came to the realisation that Conor is exactly who he is supposed to be and I would not change Conor, but I would most definitely change the world for my gorgeous Puddin.
We feel lonely.
It has been my experience as a parent, that the friends I had before Conor was more, all disappeared with the exception of the incredible few – Caroline, Emer and Gillian. They never left myside. They didn’t understand the world I was now living in and to be fair I didn’t either, I was finding my way. You can imagine with such a new busy life, I lost a lot of friends as I wasn’t able to be present in those relationships on the same scale prior to Conor being born. I am thankful always for the friends that remained and for those that left, I am thankful too, as they made way for new friends who understood my life, parents just like me who were raising autistic children.
We view the world differently now.
For me this is the truest of all that I have written in this post. I really appreciate my life now, my children, my partner, my family. I value the little moments, the kind words from friends, a smile from a stranger instead of a glare if my boys are out and about socially. I have always had a great empathy for anyone struggling or those who were different, now more so then ever.
We become Therapists.
When you have children who are autistic, they may have to attend various therapy sessions where you the Parent are shown how to support and empower your child at home. Your Child’s needs do not end once the therapy session is over. You have to go home and carry on that therapy daily until the next appointment providing relief to your child who may not be able to physically provide it for themselves.
We look exhausted, because we are.
I know that before I had Conor I would be nocturnal, I would have time to myself where I would pick and choose what I wanted to focus on and research. I could survive on little sleep, but I still had sleep. From the moment Conor was born he did not sleep at all, I mean he literally did not sleep one whole night ever. He wasn’t able to sleep day or night at all. The only way to help him sleep was to hold him against my chest sitting upwards or driving him around the roads at night time, I ended up in Galway many nights (I am from Mayo!). When Conor was 2 ½ years old he was eventually prescribed on a type of sleep aid called melatonin, which he still takes to this day to help him sleep as he finds it difficult to fall asleep or even stay asleep. He still wakes at night and can stay awake all night, luckily that will only happen a few times per week.
We survive on Hope.
I personally am always hopeful. I have seen huge progress in Conor in all areas of his life and I am very proud of the young person he is becoming. I am proud of the smallest to the biggest achievements, he has made as I know the amount of courage/bravery and dedication it has taken from him to progress. I will always be hopeful of progress.
We may not hear the words I love you or receive a kiss from our children.
For me this is true to some extent. But also I have learned to realign my expectations of what “saying I love you” looks like, or what a kiss feels like.
Our children communicate and interact in a way that is organic and authentic to them. Conor’s way of communicating is to use his speech device or use a Lámh sign, he will rest his head on your shoulder and that is his love language.
My Tribe
What I know now more than anything, is that sharing our life experiences as parents helps us to feel connected with one and another. I am thankful every single day for the friendships I have made with parents just like me. I have found my tribe.
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