‘I never signed up for this’: Mom of severely autistic daughter thanks the ‘difference-makers’ who ‘deliberately’ step into the world of autism

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“Autism will introduce you to difference-makers.

I never signed up for this. Autism came to me. But my life is constantly being blessed with people who do in fact ‘sign up for autism.’ They are the therapists, teachers, paras, volunteers and doctors who dedicate their life to helping individuals on the spectrum. All these people make the deliberate choice to join the force. The don’t do it for the money. They can make just as much helping children who don’t need their diapers changed or they can choose another more straight forward area of medicine. If there is a blessing to be found in this journey, its definitely the people, the difference-makers.

These people become your team. They learn to see what others can’t see in your ‘difficult child.’ They love what other people would find unlovable. Miss S, decided Sadie was her favorite even before Sadie reciprocated anything back to her. She patiently joined Sadie at her level, bobbing and avoiding Sadie’s aggressive attempts until Sadie reached back. No surprise, this person became Sadie’s bestie. Miss H, has a degree that would make her skilled in any elementary classroom. She could have been like me, a mainstream kindergarten teacher and enjoy all the dramatic growth that occurs in that powerful primary year. She could have gotten the homemade cards, the affection, admiration and the thank-yous. Instead she chose to work with non verbal students who will hopefully make slow progress thanks to her tremendous daily effort. When you teach students with low functioning autism, you are one of those people who just wants to unconditionally make the lives better for others.

Regan MacKay Lister/This Is Autism

The difference-makers don’t just look out for your child, they look out for you, too. They are the behaviorists that see you at your breaking point and look for solutions for your family. When your child in diapers starts making it a habit to remove her soiled pull-up in the early waking hours, a difference-maker will show up on your porch on Sunday evening to gift you specially designed PJs for this exact problem. They don’t wait till Monday morning at school because they want tomorrow to be a better day. They are the doctors that invite you to their home to discuss the solutions they are dreaming up for you, just because they have been reading your posts. They are the parent of an autistic child who becomes a therapist to help others and share their wisdom. They are the therapists that stay late and answer all your questions even thought insurance is no longer paying. They are the angels that answer your ad, meet your child and say ‘I can do this.’ And the mean it. They see potential when other people just see problems.

Regan MacKay Lister/This Is Autism

I often wonder what I would do if quitting autism was an option? Would I stay the course? I am honestly not sure. But this is a rhetorical question just for the purpose of reflection. I could never quit Sadie. I’m too unconditionally in love with my sweet girl. But there are many hearts out there with unbinding contracts and still they choose to stay, serve and be my teammate. These are the difference-makers that inspire me.

Regan MacKay Lister/This Is Autism

This story was submitted to Love What Matters by Regan MacKay Lister of Hummelstown, Pennsylvania. Her 7-year-old daughter, Sadie, has severe autism. Lister shares stories on her This is Autism Facebook page. Read some of her posts below:

‘People often ask me what is the hardest part of having a child with autism. The irony is, it’s not the child with autism. It’s my other child.’

Her ‘disability is invisible’: Mom painstakingly navigates outings with daughter who has severe autism

‘It’s stressful to throw money at something that has almost invisible results’: Having a child with severe autism affects your marriage

Mom lays out clear cut ways to help maintain a sense of ‘community’ for severely autistic daughter

‘Autism is sad. But I am not.’

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