What if it was Me?

For me, my darkest secret is that I feel, and sometimes it feels like I know, that I caused my son’s autism. And his struggles.

It breaks my heart. And the guilt chases me day and night.

It all started when I read an article about how trauma as a child could cause autism. The mothers were described as ‘refrigerator mums’ and if I’m honest that was me.

My eldest two children were, and are neurotypical, thriving, chatty, oh, so chatty girls.

My son is nonverbal, epileptic, low functioning autistic with challenging behaviours. He is four. And he is awesome.

His father, my husband, was diagnosed with terminal cancer when I was pregnant with him, and a few months after that he died in my arms at home, in our lounge.

Jacob spent this time in a travel cot so I could feed him in the night whilst administering palliative care to his father.

He was loved and cared for, but he wasn’t nurtured and stimulated like he should have been, like his sisters were. Like he deserved.

There was no time for music with mummy or long stories before bed. I stopped breastfeeding him as I needed him to sleep longer between feeds.

I was sad, so, so sad all the time.

I concentrated on saving my happy face for the girls who were 4 and 2 at the time.

I was a mum running on empty, caring for a bed bound husband who in the end didn’t even recognise our baby, who was reliant on me for every aspect of personal care.

As a nurse myself I wanted to care for him solo, to keep him at home, to love him for as long as possible.

I look back now and it haunts me at the damage I may have unknowingly inflicted on my son.

After his death I had to work two jobs to keep us afloat, child minder drop offs at 6:30 am, quick easy teas and lots of corner cutting.

My son didn’t have the babyhood my girls did, and deep in my heart I felt like every milestone he didn’t make was a reflection on the heartbreak he grew up in.

My own Dad, only in love, told me that he read that sometimes babies grieve and it stunts their development.

So google, once my friend, became my enemy, I found studies and articles reinforcing this belief that childhood trauma could cause all of his difficulties.

Speech delay, social withdrawal. Oh how the guilt consumed me.

His autism and epilepsy diagnosis helped me heal, maybe it’s just the way his path was sown, when he was just a little baby in my tummy.

But still even now, I find myself praying, apologising, crying for the babyhood I couldn’t provide for my precious innocent son.

My anxiety got so bad that I had to have CBT and grief counselling. It helped me rationalise my guilt, but it’s still always there, sometimes just a shadow in my mind, other times an intruder in my thoughts.

Watching your child struggle without being able to fix it, is painful, but feeling you also caused it is insufferable at times.

It’s been nearly four years since he lost his dad and I find myself feeling like I’ve failed him to, that maybe he would have done better, that the children wouldn’t carry these scars if they’d had a better childhood.

But the truth is, we can’t control what happens next, decisions we made. We can only choose to try harder, in the here and now.

Every milestone we hit we celebrate as a family because even in my failings we never give up on each other.

My reason for this post, is that I see it, I see the guilt in every newly diagnosed family.

In every mum or dad dealing with self injurious behaviour or hitting, or fecal smearing. I see the ‘what could I have done better?’ The ‘what am I not doing?’ And the ‘what have I done to cause this, why can’t I help?’

All I know is when I see you, I see heroes, I see friends. I see advocates, love and family. And through that I can see myself in a better light.

We all have our unfair struggles, we all make mistakes. But let’s together, all learn to be kind to ourselves, to each other. To celebrate the beauty in everyday.

And when we forget to, let’s promise to remind each other.

Written by, Jade Channon 

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  • Colleen

    April 16, 2019 at 9:01 am
    Reply

    Jade- My husband was diagnosed with cancer last year and went through 4 rounds of chemo and 3 different surgeries. We have two kids, […] Read MoreJade- My husband was diagnosed with cancer last year and went through 4 rounds of chemo and 3 different surgeries. We have two kids, a daughter and our son with autism. All I kept thinking during that time was- it was hard enough being a special needs parent, now I will have to do it alone, without the one person who understands the heartbreak and joy of this like I do. I can't even begin to imagine what you are going through. I'm so sorry for the loss of your husband, and everything you had to endure during the end of his life. But look, you are doing it! Even if its hard everyday, you are still being a great mom. Thank you for the inspiring post. Read Less

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Finding Cooper's Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you're never alone in the struggles you face. And once you find your people, your allies, your village....all the challenges and struggles will seem just a little bit easier. Welcome to my page!

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