Sometimes our front door is a revolving door. Some afternoons it seems people are coming and going non-stop. It takes a village to take care of my son and ensure all his needs are met. At times, I feel like I don’t have any privacy at all.
I pick my boys up from school every day. We go straight home because my oldest has therapy starting at 3:00 p.m., Monday through Thursday. He receives speech, occupational, and physical therapy each twice weekly. All his therapists come to our home.
Therapy sessions are usually over by 5:00 p.m. If we had to drive to a clinic every day, we wouldn’t get home until much later. Then we eat dinner and do the bedtime routine. There isn’t much downtime for anyone.
However, we also have a respite provider who comes to help at least three days a week. She gets to our house around 4:00 p.m. She helps our son with any homework, plays, and interacts with him. She helps feed him during dinner.
She then bathes him and gets him ready for bed. She is so very helpful to our family. She knows and understands our family dynamics well. She has become part of us.
We are very, very fortunate. I know how lucky we are to have a respite provider. Respite helps our family so much. Most of the time we are home when she is there. Sometimes, my husband and I are able to go to dinner alone for a couple of hours. It’s a nice break.
But sometimes, I want my house to myself. I want to be able to do what I want, when I want. Sometimes it seems like we don’t have any privacy. Even though I know I need the help, there are times I feel guilty that we can’t do it by ourselves.
Our household is pretty hectic. We have a lot of stuff going on all the time. We have had to learn that our normal involves having people in our house a lot. My son will need physical assistance for the rest of his life. It’s something we must adjust to and find quiet when and where we can.
The Family Support section provides lots of information for families of children with disabilities.
After making the difficult decision to medicate your child, with time and on occasions, old symptoms return or new ones appear. Once again, you’re faced with what felt like an already-made decision - to medicate higher or more, or not.