Stepping Back

I haven't paused and truly thought about the hardships of having a brother with autism for a long time. I don't know why, maybe the overwhelming workload from Uni leads my mind elsewhere, maybe I've tried to block the toughness out of my mind, maybe it's just something I've lived with for so long I barely notice it anymore. Or maybe I just let my parents deal with it all.

This past weekend, my parents went to Dallas for the screening of the Alex Spourdalarkis documentary (so incredibly powerful by the way, watch it if you haven't already.) As many of you with siblings know, people like my brother, despite being 18 years old, can't be left alone for the night. If I am completely honest, I was reluctant to leave the fun and escapism of Uni, particularly as Thursday nights are the one night of the week I get to let loose. I love my brother and will do anything for him, but sometimes it's certainly more convenient to take the easy option out.

But God taught me something this weekend. Through being at home, playing the role of 'mum and dad' and looking after Billy, I have realized something. Autism IS HARD. So hard. And autism parents, carers and guardians are beyond incredible people for the work they do behind the scenes. We are so truly blessed to have you in this world.

This morning I received a call from my mum checking that everything was going well at home.
"Has Billy had a shower? Changed his clothes?"

I paused. No. No my brother of 18 years old has not changed his clothes, or showered, or even had breakfast this morning. Toby meanwhile had already packed his bag, showered and spritzed himself and changed into his trendy clothes ready to impress the girls that give him a ride to school every morning.

I broke down. Overwhelming sadness filled my heart. This is not fair. My brother Billy should be going to school and flirting with girls. My brother Billy should be wearing Topman clothes and playing soccer for the school team. My brother Billy should be coming with me to 6th street on a Thursday night instead of being babysat, instead of being stuck at home all day whilst my parents tirelessly look after him, teach him things and help him grow.

To parents and carers of people with Autism, I applaud you. To the siblings of people with autism, you are NOT alone, I get it, it's tough, but let's play our part and help a bit more. After I 'jacuzzied' Billy this morning, I helped him pick out a cool outfit, styled his hair and made him his favorite paleo pancakes with cacao sauce. It was immensely rewarding and the way his face lit up is something that will never erase my mind.


To the ignorant who are self-centered enough to not even look into the causes of Autism, shame on you. Despite EVIDENCE, your pride, greed with money and 'complications' are more important to you than precious lives. One step back is all it takes. #hearthiswell #CDCWhistleblower

(Billy enjoying his favorite milkshake drink and his trendy outfit this morning)

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9 comments

  1. Your compassion is commendable and you are a voice to many.

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  2. Bravo......I am one of these parents Twins 24 years old. You get it. Thank you for writing this :)

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  3. Bella love conquers all, none of us are alone not even those that fall victim of autism. My dear friend dr carol stott taught me so much as did your parents so push through and breathe slowly know that you are a better person than anyone that hasn't experienced all you have xxx

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  4. Bella, THis is Erik Nanstiel. Ignore Science Mom or any other cowardly and anonymous troll who doesn't understand what it means to be responsible for somebody so vulnerable. You have a right to your feelings, and you have a right to share them. You're a great sister and you have my admiration.

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  5. You are such an amazing sister and he is so lucky to have YOU on his side! I can only imagine what it would be like to have a sibling with autism and I have the greatest hope that my youngest son is as strong an advocate for his brother as you are to yours. :) You are awesome!

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  6. Bella you have such compassion and love for your brother. The ability to see it through his eyes as well your parents is inspiring. Your empathy with take you so far in this world. Keep up the awesome job Bella! God has big plans for you! xo

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  7. Bella, thank you for writing this blog. Billy is blessed to have a sister as loving and caring as you are. You have a gift. Please keep writing and do not be dissuaded by the negativity. We need to hear from the perspective of the sibling. So many don't understand when parents say how hard it is. Others don't care to know until it happens to them. You are giving the public great insight into what its like and brought dignity and honor to your parent's daily job in caring for your brother.

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    1. You don't think caring lovingly for an 18 year old with Autism is dignified and honorable? Would you rather that that our children be abandoned? Get off of this blog.

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