It started maybe close to two weeks ago and seems to have reached a crescendo today. I don’t know what triggered it- we had slacked off a bit on his dose of the mitochondrial cocktail while we were away, and just went back up to the recommended amount. He has had major sleep disturbances this week after we did that. He has also been on Aricept for exactly 3 months. I am talking about Nate, it’s almost like someone turned on a light, all right, maybe with a bit of a dimmer switch, but a light nonetheless. It’s his speech, and it’s freaking amazing to see.
Here are the words we have heard in the past few weeks (if I can remember them all)
Bye bye, Carla, go, up, open, bath, chicken, fry, corn, juice, chip, no (well duh), JACK, night night (for which he says da-da, but he does it consistently), he said no no Jack when Jack was shoving his lollipop in his face after OT tonight. And he has said things, like, “go bye bye” or “Carla, bye bye”. He waves bye bye, he claps his hands, he stomps his feet, and best of all, he gives kisses.
This has ALL developed in the last month. After two years of basically more and cup. (and a few words gained and lost in the mix) The key in all of this is one that will have every autism mama shaking her fist with joy when she reads this. He is REPEATING sounds and words when we ask him to. He has figured out what that means, and figured out that he can do it. And he is doing it; he is really really doing it. I’m not even that afraid to say it because it’s such a dramatic improvement that even if he regresses again I truly don’t believe he can go back to where he was. Once a fundamental concept like repetition is grasped, it’s much harder to lose than one random word here or there. So repeating is a step in this journey- he doesn’t necessarily know the reason he is saying all of these things (although I think he knows for many of them) and he requires prompting. As his speech pathologist Carla was telling me, we need to use these “action words” with him consistently now, so every single time we get to a door, I need to kneel down, make sure we establish eye contact, and say “open” until he says it too. Same at the car door, and then “up” before he gets in his chair.
We have been saying the words like this, but now that we can truly get his attention, it takes some more, well worth it, work. To make sure the joint attention is there.
Right now, it feels like I have won the lottery each and every time he says a word. All parents are thrilled to hear a new word from their child right? Imagine waiting 4 years to hear bye bye? Or up? An average person on the street would think I am nuts the way I jump up and down, hug Nate, and nearly cry each time he verbalizes something. Not nuts, just very very grateful.
So to every mom and dad of a “neurotypical” little one, and to my beautiful little sister who is soon going to witness these events with her own son, I say this. Do this for me- just humor me. When you hear a first word, or a new word, or see your child point, after you celebrate, which you should, repeat what I am saying now (to yourself, please not out loud- you might get a few looks lol). This is a MIRACLE. This is MAGIC. And no matter how difficult it is sometimes, (and speaking as the mom of another child who never ever STOPS talking I know just how difficult it can be) don’t let yourself take it for granted.
That’s one issue I don’t have with Nate. I take none of it for granted. I am an emotional wreck tonight after all of the things I have heard him say today. I want to go shake him awake and make him talk. I want to pinch him, wake him up and make sure he will still repeat “up”. I want to line up all of his snacks and repeat over and over again what each one is, just to see if he will say it. I want Jack to annoy the crap out of him just to hear him say no.
Instead, I will just say this little prayer tonight:
First, thank you God. This is amazing and I am in awe of what my little boy can do. But, please God, please let this be it!!! Please don’t take this away from him- again. His mama couldn't handle it.