When Your Child is Disabled - Advice from a Wise Woman I Wish I Had Followed

Author: Kathleen M. Cleaver
Published: 21 Feb 2023 - Updated: 24 May 2023

Contents: Synopsis - Introduction - Main - Related Publications

Synopsis: Sometimes, things can't be fixed, and we have to give children and families information and instructions on how to live to the fullest with a disability.

Introduction

Background

My younger sister is legally blind, hard of hearing and intellectually disabled. If she was a young child today, she would probably be diagnosed as autistic. My oldest daughter suffered from severe seizures after her birth, most likely due to hypoxia during her birth. She has been diagnosed with a significant intellectual impairment, cerebral palsy and an acquired microencephalopathy. If you have experienced the disability diagnosis of a family member you understand how devastating and heartbreaking it can be. The grief can be overwhelming. The way you deal with that grief can also be overwhelming.

Main Content

The Advice I Wish I had Followed

There are two words my mother said while trying to comfort me after our daughter, Tricia, was born. They were, "enjoy her." I know now, as I look back, she was expressing her feelings when raising my sister. I wish I had listened to her. Instead, I tried to "fix" my daughter. I enrolled her in early intervention, hired physical, and occupational therapists to supplement the therapy she was receiving in her early intervention program. The more I increased Tricia's services the more irritable she became.

I studied articles and developmental charts hoping to find information that, even though Tricia was at risk for being disabled, she was developing normally. One day, one of my husband's friends commented that I was acting more like Tricia's teacher than as her parent! He was right! Yes, I love Tricia with all my heart, but did I enjoy those first years of her life? No, In my grief I was trying to make her normal.

Conclusion

Tricia was born during the time that early intervention services were in their infancy. I am grateful for the services Tricia received, but sometimes I think I was misled by the belief that the more services a disabled child receives the more they will achieve. At the time, I believed that. The trouble with many theories and practices in education is - what is right for one child may not be helpful for all children.

Sometimes, things can't be fixed. Sometimes we have to give children and families information and instructions on how to live to the fullest with the disability. Instead of grieving over what we can't fix, we need to learn to enjoy what we do have. Only then will you find enjoyment and become resilient.

Author Credentials: Kathleen M. Cleaver holds a Bachelor’s degree in elementary education and the education of children whose primary disability is a visual impairment (TVI). During her thirty-year career as a teacher, Kathleen received the Penn-Del AER Elinor Long Award and the AER Membership Award for her service and contributions to the education of children with visual impairments. She also received the Elizabeth Nolan O’Donnell Achievement Award for years of dedicated service to St. Lucy Day School for Children with Visual Impairments. Explore Kathleen's complete biography for comprehensive insights into her background, expertise, and accomplishments.