Thursday, March 07, 2013

Milestones and Mistaken Expectations

My son hit his milestones on time for the first time since his birth. It was an exciting day. First, his preschool teacher came and did an evaluation; he was right where he needed to be socially and emotionally (even if he doesn't know how to play with other little children his age), developmentally, he was doing just what he should be doing. Yeah!

Then, we saw his physical therapist and his speech therapist; they both agreed that the problems we were seeing weren't significant enough to require ongoing treatment. He was discharged. The orthotist refitted his DAFOs and scheduled a recheck for three months - he may be done with those soon, as well.

All these milestones are very exciting! It is wonderfully delightful to see my son running around, imitating words and phrases, harassing his sisters and telling me "NO!"; in short, to see him being a "normal" little boy. It has been a long time in coming, and (as I've come to realize) by no means guaranteed.

When we began this journey (was it just eighteen months ago?!), I couldn't see past the seemingly endless number of medical appointments, visits to specialists, and therapy sessions. The list of tasks to practice seemed overwhelming, made even more complicated by the struggles and challenges of his older sister (who remains in OT and speech). For some reason (i.e. my innocence and ignorance?) I thought that when all those appointments were done, life would be easier, maybe even simple.

I was sorely mistaken.

Life is not simple. It is easier, because we aren't spending hours in therapy every week, and we understand how to manage many of the issues that drove us to therapy in the first place. But it is not "easy," at all. The issues remain; we just understand how to manage them better. His Cerebral Palsy, however mild, still impacts his life every day. His sensory issues (probably secondary to the CP) cause tears and trauma multiple times through out each day. Even something as simple as changing his clothes causes far too many tears. 
It is exhausting.

This isn't like a cold or the flu; he won't ever get "over it." He will continue to improve, and as the specialist who first diagnosed the CP said, he will do whatever he sets his mind to. But, it will never be easy. It will probably never even be simple. And that, like so many other aspects of special needs parenting, is a reality I wasn't prepared for. This journey has taught me many  unexpected lessons, and I've made so many mistakes along the way (and I'll undoubtedly make more, many more), but I'm definitely learning - lots!

Ultimately, I love my son, and I'm so thrilled with how he is doing. 
Even though I've made lots of mistakes, I'm going to celebrate his milestones, 
and thereby meet some of my own. 

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