I have some news to report - not sure how to interpret it - cautiously optimistic about if we will see it again, however, tonight for the first time ever, Zach said two sentences spontaneously. Simple - but as we were approaching bedtime, and we were all huddled in his sister's room, he said "It's bedtime. Time to go 'night 'night." he continued to say "night night" as he crawled under the sheets in his sister's bed. Steve was there to witness it.
Zach's articulation is pretty warbled at times. And other times it is quite clear. These last two weeks we have heard him be able to say multi-syllabic words when prompted - something we had not seen in a very long time. But all in all, we have approached a point where we feel that nearly 4 years of trying, 7 speech language therapists/pathologists efforts, 6 special ed teachers, 4200 hours of 1:1 - things are not looking probable.
This is such a hard hard thing. I know many of you are thinking we should be overjoyed by this, but it is so easy to get burned by putting ourselves in a place of expectations. Instead, experience has taught us to just file this in the appropriate place and keep on going; business as usual. That means school, researching, private instruction and therapy, doctors visits, schedules, rituals, purposeful play, data, conferences, classes, support groups, agencies - push push push. The marathon continues.
It does help give a little pep in the step for today. But tomorrow is another day. And we don't know if we shall pass this way again. But if not, it won't be for the lack of trying.
I sit here in tears. And I am ashamed because they are not of joy. They are of my shame. I love him oh so much. I work as an advocate for families - some of whom have children who are non-verbal. As an advocate, I try to emphasize that a child is important, deserves respect and love, regardless of their abilities or lack thereof. But the truth is that I am desperate for Zach to talk. And he may never. And I know this. And I push this desire to have him communicate with me down to a place so that I can deal with the rest of life. But it rears its head. Where is the acceptance? Shouldn't I just be content with the beautiful child he is? Why do I ache? Why do I suck at this? I feel as though for my faults and my humanity, I am being teased.
I connect with Zach every day. We make eye contact, he asks for tickles or kisses. He smiles. I grab him playfully and he giggles. He cuddles with me. Tonight he put two puzzles together with me, and then refused when I asked him to do another, laughing as he ran away to jump on his bed. The teachers like to use the phrase "self directed". Sometimes I think that is just a polite way of saying "pain in the azz". What would it feel like for Zach to take me by the hand, but for once, not request a drink or a chip, but to share something with me like a favorite toy or an idea?
I sometimes joke that Zach doesn't talk because he is smarter than the rest of us. I say this, and to some extent I mean it. I have always been pretty good at choosing words and phrases, and ultimately getting my point across. My big mouth has also brought me difficulties in my life. Meanwhile, my uber quiet husband manages to stay out of the troubles I get myself into. I have always made note that Steve is labelled "the nice one."
As for tonight, who knows what it was. I am thankful that I was there to hear it. But I stake no claims other than it happened. The mystery continues.