Raising a child with a disability requires a routine and consistency. With our girl, the routine is always being disrupted by the addition of new “hardware” or equipment. Just when we get in our groove with her needs and homeschool routine, something must be changed. She has a progressive neuromuscular disorder. So her care changes often. New equipment is added at least every 6 months.
With each change, our family goes through a period of learning our “new normal.” Time and practice is a big factor in achieving that. Giving duties to specific family members keeps everyone busy and learning. The more we do a new task, the better we get at it.
I shared in a previous article the daily care of my child’s g-tube placement. But what I failed to mention is how different daily life would be. It was like having a newborn at home. She had to have a feed 4 times a day and each lasted an hour. I felt like as soon as one feed ended, it was time for the next one!
For the first month after the tube placement, it seemed like all I accomplished in a day was the four feeds for one child! As I got the hang of using the tube, the extensions, and the syringes, I started managing my time better.
To learn to use the pump correctly, we watched online videos and read the manual. Getting our other kids involved with certain tasks helped the process go faster. They learned patience. They learned how to adjust while also helping their sister.
It did get easier, eventually. It took time and patience from everyone. It was a big learning curve. Everyone had to adjust. Now, 3 months later, we feel like we have been doing this since the beginning of her life. It has become easier for me to do. The other kids are not afraid of the new hardware. And my husband is doing complete feeds on his own! We are now living our new normal and everyone has survived. We do not even remember how it was before. And we are all a little better prepared for when we need to find another new normal in the future.
There is more to learn in Family Support 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.