The Dread

I have been preparing myself for Angela's IEP meeting later this week.  Moms of children with special needs commiserate about the stress induced by IEP meetings, and we prop each other up with words of encouragement and bravery in the days before.  Some parents I know compare the meetings to a third world war, or a root canal.  It can be that intense.  Unfortunately, many school districts do not prioritize the needs of the child in IEP planning, and district budgets and resources determine the outcome.  I am proud to say that we have never experienced this, despite living in a small school district with limited resources.

No, I am not anxious about the prospect of having to wrestle the services Angela needs to learn from district officials, but there is something else haunting my thoughts-The Dread.  The Dread stems from knowing that when Angela's present levels are shared, I will grieve what is missing.  As much as I prepare myself, it is painful to hear that my girl is years behind her peers in almost every academic domain.  She will never catch up.  The very kind teachers and therapists will emphasize the gains she has made and the amazing new skills she is learning.  They will praise her wonderful social skills and that she is "a friend to everyone".  And I will be immobilized by the milestones she has not met.

This is not my first rodeo and I have attempted to console myself.  I tell myself that I am fortunate that I do not have the misplaced guilt experienced by some biological parents, who believe they may have contributed to their child's disability with their genetics.  I tell myself, "We chose this" and "We knew what we were taking on".  I remind myself that we have educated ourselves about Sturge-Weber syndrome and recovery from hemispherectomy surgery, and we have provided Angela with numerous opportunities and supports to maximize her potential based on what we have learned.  We are doing our job.  None of this makes a bit of difference.

I am overwhelmingly proud and grateful for Angela's successes.  She is an outstanding individual who has risen above adversity and is thriving and growing beyond our expectations.  I am not embarrassed or ashamed by her delays, nor do I wish for a different child.  I do, however, wish for her sake that she could just once achieve an academic award at the school assembly, participate in a spelling bee, or play on a sports team with her friends.  I want her to experience play dates, sleepovers, and being a winner in a game.  I want her to be included in private jokes and to be chosen first for a team during PE.  I want the same things that every parent wants.

The Dread is inevitable, but I will not break down from the weight of it.  I will bear it and I will prepare others who come behind me for the inevitable challenges of even the most amenable IEP meetings, hoping to somehow make it bearable for them too.