(P) Not What I Needed To Hear

Many people, upon hearing of our boy's autism, offer well-meaning comments and connections.

The other day a co-worker said his neice is autistic. Nearing the teen years, her condition is difficult. She is still in diapers, is usually in her own little world and eats a highly limited diet. Unable to verbalize meaningfully, she is not receiving any really helpful treatment. This is about the best she will ever be, without some sort of miracle. And that is a bitter pill for her parents to swallow.

My co-worker observed that his relatives act as though the girl has some demon, and that any discussion about the challenges of her disability would anger the autism demons and make things worse. Either that, or these poor folks are simply so overwhelemed and discouraged that they have no hope. The result is that they rarely talk about her needs.

They also have little help. The label/diagnois came somewhat recently, due to some very serious physical maladies that required a lot of surgery and hospital time during her first 8 to 10 years of life.

As we talked, my co-worker trying to connect a bit with your situation, he unintentionally added to my level of concern for my son. The boy is young - not even three - and his long-term prognosis remains unknown. we hope for the best, of course, but we don't know. And so, in the back of my mind - always - is the dread that this little guy may not make it past this level of intellectual, social and emotional ability. I pray that not be the case, that he will enter first grade on time and with no need for any special intervention. That is possible. That is my prayer.

As we spoke, though, this friend only raised my anxieties. What if this is the best he will ever be? What if we find ourselves in our retirement years, still caring for him? What if...?

I know this man wanted to help. What he shared with me, though, was not what I needed to hear.