False Evidence Appearing Real

A therapist once told me that fear stands for “False Evidence Appearing Real.” I liked this analogy because it helped me feel less anxious about my fears for the future. As a mom of a young adult son who has epilepsy, as well as autism, and is non-verbal, I have fears of the unknown and his future. 

Our son's future care and finding reliable caregivers

I sometimes have fears over who will take over the caregiver role of our son when my husband and I can no longer be his caretakers. Our son lives in our home full-time, and we receive community living support and respite care through our state-funded Michelle P. Waiver program. I honestly don’t think we could care for him without this assistance, and some days, it doesn’t seem like enough help.  

My husband and I both work full-time and finding quality people to help care for our son when he is not in school is hard. We have been lucky to have hired some amazing caregivers who really seem to love him like we do. However, there is always the fear of abuse when we aren’t around because he is unable to verbalize what happens during his day.

Understanding social challenges

Each child with autism and developmental delays is different. They handle social situations differently than the typical person, and you can never plan how a particular outing might go. 

It takes a great deal of patience and thick skin to both navigate social outings and dismiss the stares and sometimes shrewd comments from onlookers. It takes even greater stamina to navigate the healthcare and educational system for children like him. It was honestly much easier when he was younger because there is a slew of services for young children with disabilities.

As he ages, I find it more difficult to find services for young adults. There are no summer camp programs or social services for adults with dual physical and developmental challenges.

I realize that people who have not been around my son and others with similar diagnoses do not understand. Our son looks like a normal young adult boy. 

If you were to spend just moments with him, you would tell from his walk that he has cerebral palsy, and if you look at him in the eyes, you will see he has a vision impairment. You would learn that he cannot speak when he verbalizes sounds to communicate. 

Encouraging social interaction and celebrating milestones

I just wish people would look past those physical things about him and inquire about what he likes to do and how to best interact with him. He uses an iPad to communicate his wants and needs and is getting better at using it every day. I would like to teach him how to interact with others socially and introduce himself to other people using his communication device.

He is also learning to go to the bathroom and can undress himself. These little milestones are things we take for granted.

I often think about how our son might feel and the frustration he is feeling because he wants something and is not able to communicate that want. It is gut-wrenching as a mother to want more for him and not be able to find the resources to help him at a reasonable cost.

Stress and anxiety management in caregiving

All these things cause a great deal of stress and anxiety. How I deal with it is a road that I am learning to navigate daily. 

I pray a lot. I pray that our son will always be protected and cared for like we care for him. I pray that we find the right resources for him. I meditate and allow myself space to enjoy life and the things that make me happy.  Finding the balance is the hard part. 

The mom guilt is always there, but I try to remember that if I don’t take care of myself, I am not going to be a great caregiver for him or the rest of my family. I follow other moms with a similar path on social media who share their stories. It helps to know I am not alone.