We have been in a steady uphill push for the last few weeks. The winter break is out temporary finish line and it’s a mad dash. So much is poured into a child with special needs- from testing to doctor visits to therapies to extra work at home to extra work from us. Each experience is unique but “extra” is the common thread. The “extra” is bearing down on us.
The past two Thursday mornings we have had the pleasure of company in the waiting room. My fellow waiting room veteran mom and I are ecstatic to let our three year old boys impromptu play-date while getting to converse with an adult. Yay! Today we dealt with the common thread of the “others.” We have at least three other children plus some transient bonuses. Each week therapy is two hours by the time we travel and complete a session. Two hours is a significant amount of time and we integrate/build in extra time during the week. That’s just therapy. There is time to teach, deal with melt downs, hugs, tackle problems, victory dances. Not all time consumed is a challenge. Our Ghost child can over shadow and make other ghost children. How do we find a balance of one who needs more and all of our children’s needs?
One simple solution I found in the waiting room. This was our time- Red and I. That hour he had my attention and we read book after book after book. It’s easy to check out because I am way over stretched. There has been many times I have dropped whatever to listen to a cheer practice, listen about football, read a book, discuss legos. Being mindful of opportunities that pop up then taking advantage of it helps them see their value while making the most of my precious energy. Very precious, minute energy.
Opportunities may not pop up. In that case be intentional and it doesn’t have to be costly. Extra time in presence goes a long way for siblings- from reading, talking, playground, etc. Simple is best and less taxing on everyone. Build in whole family events too. This is a great time of year for most towns and cities to have a variety of family bonding activities.
One thing I love about the center we are at is when a client celebrates a victory, the WHOLE family does too. Including prizes and affirmations. We all sacrifice and that needs to be recognized with attitude “we are in it together.” When a ghost child celebrates, everyone has a stake in that victory. Celebrate together.
Just as a growing family needs to communicate about a newborn, so does a family with a ghost child. I have lost track of the talks with our older two about why there are different expectations and handling of things with ghost child. Plus why it’s fair to be different. There is communication on how they can help their sibling ghost too. Like allowing extra swing time because it helps calm her. They help with speech goals and using self regulation tools. I have amazing kids. They are understanding most days and take to heart in helping her. There are times it’s understandably much and they need grace in that too. Age appropriate talks with siblings of a ghost child is imperative. You must do this.
Hug and love on all your little loves and bonus loves. You have a lot to give; please remember your pact as a caregiver to care for yourself.
Balance is possible most days and grace is necessary all days.