We see glimmers of what my brain is calling “interactive Alex” today…
But not much, not as much as has become the norm for our family.
Alex tries his hand in imaginative play on occasion, but he is pretending to pretend if that makes sense. He checks back every couple of minutes “it’s just pretend” if we join him in pretending, to encourage him to explore, he often informs us “It’s just pretend Mama” or “Daddy, we are pretending” and need reassurance that the world hasn’t actually changed into the world we are pretending and that all of us haven’t lost our marbles.
Yesterday evening, he found a pebble that he had found at school before the winter break. We think it is a pebble. We kind of hope it is a pebble and not some petrified parking lot weirdness he picked up between Christmas carols with the rest of his school, where the kids were outnumbered by parents and cameras.
He announced “This is Fred” from the other room.
“He is my best friend” (I resisted the whole “I thought I was your best friend?!?!” thing, not the time or place).
He was holding him sweetly in his little cupped palm. I waited for him to inform me “I’m pretending. Fred is just a pebble. Pebbles aren’t friends, that’s silly. *insert artificial, forced laughter here*”
But he didn’t. I dipped a toe into the pool to test the imaginative waters.
“It’s almost bedtime, does Fred have a bed?”
“Oh no! Where will Fred sleep?” he quietly rubs Fred with his finger and whispers into his cupped hand, soothing Fred.
We locate the origami box we made together (together = me: folder + Alex: telling me I’m doing it wrong even though he’s never done origami in his life and he picked the paper- a sheet of orange for him, a sheet of blue for me). Alex takes the squished origami star (from a lady in hawaii who sells them on etsy by the bag) from it’s station near his piggy bank and declared it to be Fred’s pillow. I look for a blanket. Alex was definitely not down with using easter grass as a mattress, but he opted to use a wad of it as a blanket, for Fred.
It was then determined that Fred really wasn’t tired, but he wanted dinner. Apparently he eats minerals.
But he had no place to sit. I found the funny tin from the Wasabi gumballs (gross. not worth the novelty.) and a small lipbalm slide tin. Alex declared the smaller tin to be the couch, the lid is Fred’s widescreen HDTV (Alex is precise about the names of things), the larger tin is Fred’s Den.
Anyway, at this point we are probably 30 minutes into the Fred thing. It’s a record.
The evening continues and Alex tucks him into bed, and leaves the box near the phone in the kitchen and then decides that Daddy will probably not mess with Fred and it’s ok to leave Fred on the nightstand next to Daddy’s side of the bed.
Alex was spending the night in the big bed with us, for extra snuggles and he wanted to keep an eye on us (and us on him, but don’t tell him that, he’ll deny it).
Still, no announcement of the happening of any pretending…
I was very, very worried.
He woke up this morning, mid-sentence.
“Galileo CD is not in the CD book. Baby Galileo has dark blue.”
I am used to this, we lived like this since he started talking. He didn’t even look at me. He climbed over me and onto the floor.
“Good morning Fred” He removed the tiny pebble from it’s box and handed him to me
“Good morning Fred, welcome to your day! It’s going to be a good day!” Alex seemed happy about this.
He turned toward me but didn’t look at my face.
“And then we will put the CD in the Philips CD Player and I can hear it.”
He turned around a walked out the door. Not his enthusiastic little tippy-toe run. He walked, steady.
He continued to describe the CD. I followed him and asked questions. I suggested he go to the potty and I would look for the CD in the CD book.
It isn’t in the book. I started having that same old panic I haven’t seen in awhile. Alex fixates. If I can’t find the CD we are going to hear about the CD for weeks on end. He will not be able to function until the CD reappears.
He puts Fred on the bathroom counter and I tell him that I can’t find the CD, but I will see if we have it in itunes.
Thankfully, it seems that some flexibility has remained and he does not protest. But he does follow me around telling me about the details of the CD and singing some of the songs (he sings the notes to classical music, so I’m getting words and soundbites as he tries to reach me fully, so I understand the exact thing he is looking for. Yes I realize this is a huge thing in regards to communication, but there is so much to this that isn’t quite right that I can’t quite explain it effectively, it needs to be experienced to be understood).
Through process of elimination I figure that the Baby Einstein Galileo CD is probably the lullaby CD (there are a few shared songs), so I grab a blue cd and burn it.
He is so excited when I tell him what I am doing. We hear the computer’s whirring stop and we go to get the CD. I take it out and hand it to him. His eyes are twinkly and dreamy, he is smiling, his voice squeaks “You made this for me!” and then he looks at it.
It is not the Baby Galileo CD. It is a blank blue metallic CD that I burned for him. It does not look like the Baby Galileo CD that is taunting him from memory.
He tells me it doesn’t have the words on it.
I offer to write in the name of the CD for him. He agrees this is a good plan.
I write the name of the CD for him and his face falls, he is getting distressed that he can’t reach me- that I can’t understand him and magically duplicate the CD-including the artwork, on demand. He thinks I don’t understand. I do understand him, so very well, but this rigidity of thinking won’t let us meet anywhere that a solution can be found.
My sugar drops at this point and I tell him “cd from the computer or no cd”
I make us breakfast and we eat breakfast in bed.
And he remembers Fred.
Who is now missing.
And Alex is very upset and while he has returned to his rigid thoughts and lack of flexibility, his imagination (he isn’t pretending to pretend to blend in like he often does) is a little wilder…
I just want to hold him until everything is calm and bright again.
I want to make emergency appointments with all of the specialists and his pediatrician, not because he needs them today, but so I can say “See, this is what it was like before we learned that he has different needs! See! We aren’t crazy dumb parents. This is real. Now help us and help him!”
But Alex needs hugs and he needs to sing the notes to Ode to Joy (oddly, in a Tom Waits “voice” today…) over and over and over and over and over and over and over again.
My ears are ringing, my eyes are stinging, I am exhausted and angry and sad and frustrated.
Oh how I wish there were a planet just for us.
How I wish I hadn’t taken the progress for granted the little bit I did…Did I jinx it yesterday when Jeff said “He’s doing so well all of a sudden” (while he was at school) and I tried to quiet my brain from the thought “ok, so what is going to f it up?” Life has been that way, Jeff calls it Big Luck- amazing fortune followed by dramatic misfortune…. This is no exception…
How I wish I could express the differences without sounding as though his differences (that we love as part of him) are terrible or not of consequence or what some folks would call normal as components, but in a specific combination is means my kid needs extra care in all parts of his day.
It’s hard to paint the picture because I haven’t found the proper brush just yet….
Hugs all around,