Have we hit a wall or is this just another leg in the journey? A Grammy rant.

I just returned from my grandson’s IEP meeting along with his parents. There is a building frustration on many levels among us as Parents and Grandparents.

He has great teachers and a good program. He goes to a school that addresses special needs and multiple disabilities on many different levels. He still struggles to read, regardless of his program. Some of it is his limited vision, some of it is his developmental aptitude, some of it is basic teenage willfulness and non-compliance. We’ve all been there. His report card displays marks all in the high 90’s along with comments stating he is a ‘pleasure’ to have in class. So where is that ‘building frustration’, one might ask? I think a wall has been hit.

This is uncharted territory for all of us. I don’t know of any family that is handed a manual on how to raise a child with developmental issues, whether they are born with them or acquired. There is no rule book and don’t we all wish we had one.  In any developmental delay, it’s all relatively defined on a sliding scale. Nothing is an absolute.  That sliding scale is what helps identify the extra support and what specialized intervention is needed, but that doesn’t identify the unknown. Nobody gets the advantage of crystal ball for the future of their child. While we might know what the program and planning is for the coming year, we do not know how he will acclimate or IF he will acclimate to new expectations. That is not only frustrating, it must feel frightening to a parent who looks at their young adult child and has to seriously think about how or if their child will be able to function and survive as an independent adult.

My personal frustration is sitting with his parents and sensing the disappointment that comes with the realization that regardless of superior interventions and support, nothing is going to ‘fix’ his disabilities. Likewise, I can’t fix their disappointment or frustration.  Especially frustrating for me, after thirty-five years of IEP meetings and planning, I still chafe at the sometimes patronizing rapport between the professionals and the family. I saw that today for the first time a long time. My role in these meetings is a knowledge base resource and more importantly today, to be the buffer for my daughter and her husband with the Child Study team. I don’t mind, I know my role. Today’s meeting was anticipated to be more emotional than previous IEP meetings, mostly because as his parents they are concerned that their son was not achieving certain milestones. There was also discussion that it might be an option to discuss a different school. It’s not that they see an untapped potential in their son. But what they do see is a lack of practical skills that they expect for him at this stage of his life. That is where the patronizing began. After expressing their feelings the counselor stated to the parents, “You have to understand what his limits are...” Seriously?  I believe every parent wants more from their kid and their school performance, when a parent is actively participating and attending an IEP meeting, just what is it you think they don’t understand?

I have taken a deep breath at many IEP meetings and usually just after such a statement. To their credit, they maintained their cool. That was the ‘teaching moment’ for them, another moment in this journey when they realize more than ever, this will always be an uphill battle for their son and the family. Nobody’s intuition about where the ‘limits’ are will be stronger than that of the family. That is what everybody else will have to understand. It's our journey.