When Your Child is Disabled - Advice from a Wise Woman I Wish I Had Followed
Topic: Blogs - Writings - Stories
Author: Kathleen M. Cleaver
Published: 2023/02/21 - Updated: 2023/05/24
Contents: Summary - Introduction - Main Item - Related Topics
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. If you have experienced the disability diagnosis of a family member, you understand how devastating and heartbreaking it can be. The trouble with many educational theories and practices is that what is suitable for one child may only be helpful for some children.
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 Item
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.
Explore Related Topics
1 - Planning for the Future: Aging, Family, and Your Disabled Adult Child - The importance of keeping wills, powers of attorney, and estate documents if you have a disabled member of the family who needs assistance in all aspects of care.
2 - My Journey in Services for People with Multiple Disabilities - This post is a short description of my daughter's journey in special education and adult services through my observation of her. Fortunately, most of her experiences were positive.
3 - Memoir Explores the Journey of a Woman Towards a Diagnosis of Dissociative Identity Disorder - In Seach of Teressa: A Journey into the Mind of a Woman with Many Personalities, by Author Dr. Lynette Louise.
4 - Celebrating Special Education Inclusion and the Forgotten Children - Kathleen M. Cleaver writes on special education inclusion, Education for All (EHA), Individuals with Disabilities Education Act (IDEA), and the forgotten children.
5 - The Need for High Quality Intermediate Care Facilities for Individuals with Complex Intellectual Disabilities (ICF/ID) - ICF/ID is an optional Medicaid benefit that enables states to provide comprehensive and individual healthcare and rehabilitation to individuals to promote functional status and independence.
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Cite This Page (APA): Cleaver, K. M. (2023, February 21 - Last revised: 2023, May 24). When Your Child is Disabled - Advice from a Wise Woman I Wish I Had Followed. Disabled World. Retrieved October 10, 2024 from www.disabled-world.com/disability/blogs/disability-advice.php
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