For a long time after learning about my son’s disabilities and limitations, I thought we had to handle it all. Going to others for help was out of the question. That would mean we were unable to take care of our son. He is our responsibility and we were to provide his care and everything he needed. I should be able to handle myself, family, job, household duties, and anything else that came my way.
I look back and realize how stupid I was! All I can think of now is my poor family and all the unnecessary chaos and hardships I put them through—the stressed and forgetful mom who was always scrambling to get the kids to practice or forgetting to sign the field trip form.
I have learned over the years to use what is available and not to feel guilty about it. Getting my son assistance with his visual impairment allowed me to meet one of my very dearest friends. She has provided endless support, information, and encouragement.
Our family currently has an assistant that comes in the afternoons and helps with my son. I do not know what we would do without her. She helps him with his homework, chores, bath and other nightly routines. She loves my son, my other children, and spends time teaching them important tasks and skills.
This allows me to come home from work and spend time with my kids. Instead of trying to get everything ready for the next day. I can come home, sit down, and read to my son.
There is also the therapist who comes to our home weekly and works with my son. What a huge relief that they can come to the house instead of me trying to get off work and load kids in the car for another appointment. I encourage you to find the resources available and use them.
Use the Services, Groups and Events section to help find resources in your area.
This article discusses the emotions and coping mechanisms that go along with having a child with a life-threatening disease that is very complex and confusing.
My young son had multiple psychological diagnoses and his behaviors were out of control.