Living with Autism: A Mother’s Raw Reality

Autism showed up in my life five years ago.

I had no idea about it before that, and it saddens me that I was oblivious to this world until it affected my family.

Now, I wish for inclusion. I wish to educate the future leaders of society about people like my son and families like mine, who live in a world within this one, which very often can feel lonely, isolated, and restricting.

Autism is cruel and also beautiful. I grieve the son I thought I’d have, and I celebrate the son I do have every day.

I am doing absolutely everything I possibly can to make his life the happiest, easiest, and most fulfilled it can be with the cards he has been dealt.

Five years into this journey, I’m still learning every day what autism is and what I can do to help my son communicate in his way. He has some basic signs, and sometimes he will use his speech device to ask to go swimming.

Most of the time, I just know what he wants or is asking by the way he looks at me. Medications, therapies, ups, downs, sleepless nights, IEPs…the list goes on.

The best thing I ever did was have more children because they have helped him more than anything else.

In his sisters, he has friendship and unconditional love. He’s exposed to the real world daily; he is treated like a king by them all, and he adores them just the same.

I feel if I didn’t have my girls, autism would take completely over, and we may never have left the house. My daughters make Rory work harder, break out of his world, and push him to be a part of this one.

My daughters, sadly and beautifully, are in this with Rory and me. They keep me strong, and they keep me going when we are in the really hard parts of life with autism. I know he will be surrounded by family forever.

Like a million other parents, I spend most days with a horrible thought in the back of my mind, the worry of what will happen to him when I am gone one day.

I need to live forever for him.

I believe my son is happy and content the way he is, and that gives me peace. Rory loves being Rory, and we love him exactly as he is also. We recently lost someone close to us who was also beautifully different. Beautifully different is ok. It’s not scary.

Please tell your children about people like my son. Tell them it’s ok to ask questions. It’s ok to speak to them, and even if he cannot speak back, he is still a human.

Coat hangers, sticks, cups, pepperoni packets… In the night garden on repeat forever… Not going certain ways… Routine is the bible… Pouring water is life… Unable to speak yet can fill the house with sound and expression and laughter… Autism… Beautifully different… not less.