Most of the time, I admit, I operate on an emotional level when I should be using logic. Through clear deductive reasoning, for example, I should have figured out those sudden outbursts made by Elisabeth were years of frustration building up maybe from not using the potty for the first 13 years of her life.
Yes, I am exaggerating a bit about the potty training because we did try in earnest every year unsuccessfully. The point is that it's never easy figuring out their pace of personal development when all we have to work with is what other children are expected to do. For some it may take an entire lifetime to reach a milestone and for others it takes only a year.
For example, when most children are completely potty trained by 4 or 5 years old, Elisabeth was at a different level of development. According to the pediatricians and specialists, Elisabeth continued to function as a 5 or 6 month old infant in all areas of communication, fine motor, gross motor, and neurological development. So naturally as parents, we responded emotionally to her needs the way most parents would respond to a 5 or 6 month old infant.
Like most parents, we used this emotional connection to form the basis for her own personal development. It made everyone around her feel good meeting her needs because it resulted in favorable responses. We saw a personality emerge. We saw progress in other areas of development.
Small and incremental at times. But we found a pathway to connect to her. We found her "happy" state." When she only fluctuated between responsive and unresponsive, we were relieved to discover the things that made her really happy.
The flip side is that keeping her in that perpetual "happy state" does not prepare her for the world outside of our home because the world simply does not function at this ongoing "happy state" level. An architect or engineer, for example, is not functioning at our "happy state" level while designing spaces and access exceeding ADA expectations. Politicians are not functioning in Elisabeth's "happy state" while debating, defining, and funding her quality of life and quality of care.
Are you following me here?
The point I'm trying to make is that all children are unique in their emerging abilities and different areas of development. And for most parents, it's a game of trial and error. We're all searching for that X factor. You know, that X factor. The factor that reveals itself after following the prescribed pathways created by what we see other children doing with similar abilities.
For parents and caregivers with children who are born with disability labels or who develop a label after birth finding that particular child matching up to their own child in ability and development is impossible. The milestones, the charts, and the sequence in development is not there for our children. All we really have have to go on is our own X factor. The factor we discovered in hindsight creating that emotional bond defining for us a fleeting but tangible smile to mean a "yes" or a flinch in eyebrows to mean a "no."