Last week we had our annual IEP meeting for our son Jon Alex. This particular IEP had a little more significance than many previous ones. Jon Alex has spent the last several years in the same Comprehensive Development Classroom (CDC) with the same teacher at the same school.
With his autism and cerebral palsy, the team he has worked with has passionately poured into him and knows him as if he was one of their own children.
Next school year though, he transitions from his middle school to a 2,300-student high school. That means a new teacher, new school, new environment, new therapists, new assistants, new everything.
Those of you with autistic children know how difficult transition, changes in routine, and changes in structure can be on the child. Dads, you know how difficult that is on your wife!
As we sat in the conference room for the meeting, my mind kept drifting to the fact that my son was now going to be in high school. I thought back to my own high school experiences, and begin to compare them to what my son’s will be like.
He is non-verbal, and mobility impaired. His day will revolve around the therapeutic services he receives and discrete trials to learn new skills. The longer I dwelled on the thoughts about this transition in his life, the closer I cam to flirting with the “Dark Side.”
Becky and I use the phrase “Dark Side” to refer to that feeling of temporary grief, depression, or discouragement that we all feel from time to time as parents of a child with special needs. You hear so many counselors and professionals tell you, as the parent of a child with special needs, that you just have to fully go through the grief process until you come to a place of peace.
What I have learned as the father of a child with special needs and as a special needs pastor is that you will go through that grief period over and over, several times through out your life. Not only that, but you and your spouse will go through those stages at your own paces, meaning you aren’t at the same place in your grief at the same time.
For me, transitional moments seem to trigger my own walks on the Dark Side.
The first time I had to shave my son’s face realizing I will have to do this every day for the rest of his life.
When others his age began to apply for driver’s license permits, and their dads were looking at cars.
When football season rolls around every fall and families begin to plan family outings to watch the games in person.
Everyone has certain “triggers” that can cause on walk on the Dark Side. So here are our ground rules for surviving a walk on the Dark Side.
1) Only one of us can go there at a time. Misery loves company. When we throw a pity party our natural tendency is to invite others to join us. To survive a walk on the Dark Side only one person can go at a time. The other person in the relationship must stay positive and unaffected, refusing to join in.
2) You cannot survive staying on the Dark Side too long. We give each other 24 hours and that is it. If you stay there mentally, it will destroy you. So if one of us ventures over, the other has to pull us out after 24 hours!
3) You must have a trusted friend/spouse/someone who will faithfully throw you a lifeline after 24 hours and come pull you out without judgment, comment, or question.
4) Don’t be afraid of the Dark Side. You can grow, mature, and learn from a walk on the Dark Side. Just obey the rules!
Remember, you were chosen and called…stay committed.