I am a busy mom of special needs children. I have two young adult daughters living at home who are both disabled. Both of them are 19 years old.
Abby is totally blind and has autism and epilepsy. She is able to get herself dressed and to entertain herself independently. She needs someone with her all the time, but not necessarily in the same room. Abby can go to her room and play while I do something else. She cannot go out into the community by herself. She will always need someone with her, and will never be able to live completely independently.
Fanny is severely intellectually disabled and has epilepsy. She is my husband’s biological daughter who just came to live with us this year. Until now she was living with relatives in a village in West Africa. She is going to school now for the first time in her life. She loves it!
Fanny functions at a toddler or preschool level. She is nonverbal, is only partially toilet trained, and gets into things just like a toddler does. We have had to Fanny-proof our house. This is a constant challenge, because she figures out how to undo our locks or simply pulls them off. She is like a toddler in her interests and behavior, but she is big and strong like an adult woman.
Both of my girls are in school, so I get a little bit of a break during the day. The early morning is busy getting them ready for school, because they both need a lot of assistance. Fanny has to have a shower every morning, and someone to get her dressed. Abby can dress herself, but I do her hair. Then I fix their breakfast and give Fanny her morning medicine.
The late afternoons and evenings are very busy, and though I try to work I have lots of interruptions. I cook from scratch most nights. After supper I get Fanny ready for bed, and Abby goes to play in her bedroom. The evening is the time for my husband and I to be together. Usually we like to watch a movie or a series on fire tv. We love our fire tv, because we can watch so many shows without paying for cable every month. We canceled cable nearly three years ago, and have never missed it.
As special needs moms, it is essential for us to take care of ourselves, and also of our marriages. Many marriages succumb to the stress of caregiving children with disabilities. My husband and I don’t want to become one of those statistics, so we take advantage of time to focus on each other whenever we can.