Disclaimer: My experience of receiving my child’s diagnosis may be different to yours and that’s okay. All our experiences are valid and there is no wrong or right way of experiencing things. We each have our own experiences. Sharing my experience in the hope that I can help at least a few of you that may relate to my experience.
My Experience
Being a parent to a child with special needs is a journey full of unexpected feelings and challenges. When my son Mr J got diagnosed with Autism at the age of 20 months, it was a shock to me even though I had a hint he was on the Autism spectrum. The shock wasn’t from the diagnosis but the level he was given… level 3!
What’s level 3 you may ask?
When receiving an Autism diagnosis they advise if they’re level 1, 2 or 3 depending on how much support they require. Level 3 meant Mr J needed the highest level of support.
It hit me deep for two reasons, because I didn't know what this meant for our families future and my heart broke thinking about people possibly seeing my boy for less than what he was because of his diagnosis.
The Grieving Process: Grieving is usually linked to losing someone, but it can also come in the form of losing the kind of life you thought your child would have.
The different emotions I felt
Shock: At first, I couldn't believe it. I was in shock, trying to understand what the diagnosis meant for my child, not knowing what the future would hold and where to start with supporting him was very overwhelming.
Denial: I didn’t speak about my sons diagnosis to anyone, not family, friends or even strangers when they asked why he wasn’t speaking yet. It’s like I had to process it all in my head before I could say it out loud. I didnt want anyone to know because I thought they would immediately look at him like there was something wrong with him rather than for who my sweet little boy was. It was my way of protecting him and holding onto no diagnoss for a little longer.
Depression/sadness: I was blessed not to experience depression as some do during the grieving process but I did carry a lot of sadness especially at the beginning. Sadness for my boy and the opportunities he would miss out on compared to his older brother.
Acceptance: But as time passed, I started to mention to others that he’s on the Autism spectrum and quickly realised that not everyone was out to judge my boy. In fact it was quite helpful at times as they would then tell me how they know someone on the spectrum and would share helpful information.
I also started focusing on the mini achievements we were starting to see. Accepting that he may not be at the same level as his brother or friends but he is learning everyday and achieving things that he hadn’t previously.
Coping and what helped me
Letting Go of Expectations: I had to accept that life might not turn out how I thought, and surprisingly, it felt freeing. It was like I became more adaptable to our own way of life and what worked for our family. Not having certain expectations of situations and from others also meant I wasn’t setting myself up for disappointment.
Dealing with Uncertainty: Accepting that I didn't know everything became my strength. Being okay with not having all the answers made things easier.
Taking Time to process emotions I set aside time to feel my emotions and stopped bottling them up or ignoring them. The more I would bottle up or ignore my emotions the stronger they became when they finally came out. It’s not always easy to face your emotions, but the sooner you face them the quicker you can move forward.
Creating a Safe environment and community: Having a safe environment helped, both within myself (my mindset) and my surroundings.
Having the right community of people is important and sets the tone for a more inclusive and welcoming experience which helps people mentally. Over time you begin to learn who is or isn’t helpful to you and your family within your community. People feel guilty to not be around certain individuals but at the same time you have to do what’s best for you and your family and what helps.
I was blessed to start a support group (Sip and share) that not only helped others but also helped me learn from others further ahead in their journey.
Head to www.helpyoucope.com.au if you’d like to learn more about sip and share.
Getting Professional Support
Some days are tougher than others and I did seek professional help when times got tough especially in the early days. I reached out to parents NSW helpline. There is so much stigma around getting professional support especially in certain cultures. However, having a chat to someone who can help you is important and not a bad thing at all. I found support from Parent Line NSW (1300 1300 52) when I needed it.
Support is available
To wrap it up, being a parent to a child with special needs means going through different feelings. For me, having faith and being around like minded people has really helped me get through the tough days.
By understanding and embracing your emotions, seeking guidance (whether through faith, professional support or supportive community) the tough days can be handled with more ease.
Help You Cope was born through my experience of having minimal supports as a carer. I wanted to ensure that Carers didn’t feel like they were going on this journey alone.
At help you cope you can expect to find the support you need as a carer. We offer support groups, well-being programs, resources, educational programs and more.
If you are seeking support in Sydney, visit Help You Cope, a supportive community for carers just like you. Visit www.helpyoucope.com.au and there you’ll find various supports to assist you.
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