How do you Feel about your Son’s Autism Diagnosis?

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Our son was diagnosed with autism in October 2018. It’s taken me some time to feel comfortable talking about his diagnosis.

I just wasn’t ready to talk about how I was feeling. But now I think I am finally ready to answer the inevitable question that follows my disclosure:

So, how do you feel about your son’s autism diagnosis?

It’s not a short answer because I have lots of different feelings about the diagnosis…

Relief

My initial emotion when I got the diagnosis was relief. Relief that the past two years of fighting and advocating for my son had not been in vain. Relief that all those people that had accused me of being a neurotic mother were wrong and that my mummy instincts were right.

Anger

The relief quickly turned to anger. I was really angry that I had been made to feel stupid every time I suggested that my son might have autism. So angry that one pediatrician has even told me that I was looking for a reason to explain why I was finding it so hard to be a mother.

Guilt

The guilt was overwhelming and would keep me awake at night. Was it my fault? Did I do something wrong during my pregnancy? Should I have had a natural birth rather than opting for a c-section? Was I right to give my son his vaccinations? Questions that I would never really be able to answer.

Grief

Grief is a very common emotion I am told. For me the grief started two years before the diagnosis when I first suspected that my son had autism. I wasn’t sure if he would still fulfil all the hopes and dreams I had for him whilst pregnant and this was hard to accept. The grief comes in waves and it used to physically wind me with its ferocity.

Sadness

It makes me sad that my son has to struggle so much. That, at such a young age, he is having therapy sessions whilst other children his age are learning to ride bikes, going to birthday parties and starting to make life long friendships. It really shouldn’t be this hard.

Loneliness

I am so lonely at times. I feel like I belong in a different world that I never knew existed before my son was born. It’s hard to explain it to people that aren’t there with you. I used to be really outgoing but my social life has had to take a back seat. Friends eventually stop inviting you out and messaging you. That made me really sad. But I am blessed with a handful of friends that have stood by me and try their best to understand and support me.

Worry

I worry about both of my children but it’s a different kind of worry with my son. I worry that he will never fully engage with the world around him, that he won’t be able to communicate his needs when I’m not with him, that he won’t cope in a mainstream school, that people will be mean to him. Please don’t be mean to my son.

Protectiveness

I am ridiculously protective of my son. You may have heard the term “Mummy bear”. When it comes to my son that is me. I have been advocating for my son and battling for services for two years. I have grown a very thick skin and will happily educate anyone that demonstrates a lack of understanding or empathy for our situation.

Love

My overriding feeling is love. Love for a little boy whose smile can light up a room. Love for a little boy that is desperately trying to understand the world around him. Love for a little boy that runs towards me with his arms in the air whenever he sees me. Love for a little boy that has already made such huge progress and never gives up trying.

Hope

The one feeling that I hold onto is hope. Hope that people will be kind and understanding towards my son. That they will look out for him and protect him when I am not around. Hope that people will be inclusive and invite him along so that he can start to make some friends. But, most importantly, hope for the future – that my son will live a very happy and fulfilling life.

Written by, An Anonymous Mother

Finding Cooper’s Voice accepts guest posts from writers who choose to stay anonymous. I do this because so many of these topics are hard to talk about. The writers are worried about being shamed. They are worried about being judged. As a writer and mother I totally get it. But I also understand the importance of telling our stories. And this will ALWAYS be a safe place to do it.

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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 our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter.

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Kate Swenson

Kate Swenson lives in Minnesota with her husband Jamie, and four children, Cooper, Sawyer, Harbor and Wynnie. Kate launched Finding Cooper's Voice from her couch while her now 11-year-old son Cooper was being diagnosed with autism. Back then it was a place to write. Today it is a living, thriving community of people who want to not only advocate for autism, but also make the world a better place for individuals with disabilities and their families. Her first book, Forever Boy, will be released, April 5, 2022.

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