January 25, 2012

by: Blackbird

A Mother’s Point of View

My son Daniel is 26 years old. He was born with a rare disorder called Cornelia de Lange Syndrome (CdLS) which causes multiple physical and mental disabilities. Daniel functions at about a one year old level and can’t walk or talk so he needs constant care. Fortunately he is not medically fragile. Daniel has lived in a nursing home since he was 18 and has attended UCP for the past four years.

I have found that one of the qualities needed in raising a handicapped child is not being afraid to ask for help when you need it. I have a large family who has always been there for me. I worked full time when Daniel was growing up and I was blessed to find compassionate and caring child care providers who thought of him as part of their families and not just a job. Also I found that it was important for me to take time for myself either by having a family member watch Daniel overnight or taking advantage of respite care that was available. I knew I could care for him better if I took care of myself as well.

Over the years whether Daniel lived at home or elsewhere, I have always been very involved in his life. I bring him home for overnight visits several times a month. I think it’s important to get engaged with the organizations and people who care for our loved ones. I’ve been active with the CdLS Foundation which is a support group for families facing CdLS. Daniel lives at Pine Grove ICF/MR Unit in Parma. I visit there regularly and am on the Human Rights Committee. I enjoy going there on weekends to feed Daniel lunch so I can sit and talk with the staff as they feed other residents. Also I visit UCP regularly where I always feel welcomed whether by the people at the front desk, Daniel’s classroom or if I run into Carmen or Natalie in the halls.

I feel blessed that I have such a wonderful and dedicated team taking care of Daniel. If something were to happen to me today, I would feel confident that Daniel is in good hands with people who truly love him. That gives me peace of mind.

Linda McCrae, Mother of Daniel

 

Our thanks to Linda for sharing her personal experience as a mother and caregiver for an adult child with disabilities.

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