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Alex this week…

5 Feb

Tomorrow marks the end of Alex’s first full week on his new schedule… It is also a week and a half since the playground beatdown.

So, how is he doing?

He didn’t stay in his “old shell”, but definitely regressed into a much nuttier version of himself…. On most days we find ourselves questioning the validity of an ADHD diagnosis as the “H” only shows up in specific stress situations. It has seemed like more of a branch, a facet of his differentness… Not my most favorite facet, but at least the rapid lap-running around the kitchen island, the constant little professor chatter, and the inability to hear us at all, without seeing our faces on the same level, at least those things are a type of communication. So the end of last week and most of this week (so far) have shown us that he is handling the schedule change remarkably well, on one level, but it has also shown us that he has learned to dampen his responses to change on one level, which is a very social thing for him to do…However, we can’t seem to break through to find out what part of the past week and a half is sticking with him…

But we are working on it…

More tomorrow…

Sleep well!

xo

Bek

Today.

28 Jan

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”

“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,

xo

Bek

Screw survival of the fittest.

27 Jan

Alex came home today, his face streaked with dirt, even his eyelashes and eyelids had streaks of black dust from the rubber playground mulch.

The kids in his class, most of them younger than Alex, gathered around and told my husband what happened, when he came to pick kiddo up from school.

The teacher didn’t say anything, so my husband asked and was told by the teacher and the principal that the kids were playing rough today and incident reports were written up.

The little kids weren’t so gentle in their telling of the happenings on the tiny, fenced playground, today.

The group of kids that were playing rough apparently shouted “Pot!” at Alex. He often mishears things, so we don’t know if they were actually calling him “Pot!” but he is upset about it. So he yelled back “Meatball” which he thought was a terrible thing to call someone, and appropriate if someone called a person a pot.

“GET HIM!” one child shouted, and ran after Alex. They tackled him and pushed him to the ground and started kicking him. When he tried to get up they pushed him down again, and kicked him some more.

He came home and they told me this. Alex was very matter-of-fact but he was also quick to change the subject, which is what he does when he is in more of a typical, traditional, stereotypical state of his autism. When things are new or different or he is nervous he lectures, factual and emotionless. Our little professor. So he went right into his dissertation and I tried to ease him back into the more interactive kid we have started seeing more frequently at home, when it is just the three of us and everything is calm.

“He’s not ok”, I said to hubby.

I asked Alex if he would like to take a bath to get all of the dirt off as he is not a kid who handles dirt well and it’s only recently that we can get him to not compulsively wash his hands between strokes on the paper with fingerpaints.

He said yes, and I got a washcloth to try to get some of the black dirt off his face, and we talked.

I asked where they kicked him, when they kicked him when he was on the ground, and he pointed at his chest and turned around gesturing at his back. He said “my spine” and “my back hurts”

I helped him take off his school shirt and there were black dirt foot prints that had sifted through his shirt, stamped onto his skin. Between his shoulderblades, on his lower back, on his chest.

He’s in the tub now, having a bubblebath.

I’m shaking. My heart hurts.

Tomorrow we have an appointment with his headmistress, we made the appointment awhile ago, but now it is more urgent and important than ever.

Something has to change. This could happen anywhere, but we would have more options up north. Here we are all stuck, and we are all feeling a bit downtrodden and frustrated and overwhelmed.

One of the number one issues we have these days, is that Alex cannot reliably pass information to us, at least not in a timely fashion. A year from now, he will mention today. Ten years from now he will mention today, and the playground, as though it just happened. I am grateful that the other kids in his class look out for him, they know he’s different but they don’t see that as a bad thing most of the time. He always forgets to grab his lunchbag from his seat when we pick him up, so another kid will bring it to me (or hubby) as soon as one of them spots us at the door. Then all of them say “Alex, your mama is here” to him, gently coaxing him to look up and focus and see us and his face lights up.

I don’t know what happened on the playground today.

I know we will never know what happened on the playground today. I know that school won’t let us see the tape. I do know it was more than playing rough. Alex said the kids were bigger than he is. I have a feeling the set up for today’s incident was thoughtlessness and carelessness. It’s a small playground, the classrooms are mixed ages, but blending those mixed ages with the next age group up, on the playground, with non-too-diligent observation by staff, is not wise, even from a layperson’s perspective. I realize that Alex isn’t necessarily a complete innocent and I know we will be working intensively with him on this stuff throughout his life, but I also know that nothing should ever get this out of hand, in a 500 square foot playground, with supposed supervision. Kids fight, I know. But a bunch of kids chasing another child (who is 5 and small for his age and different from them…which may be why they were targeting him to begin with…) is unacceptable.

Screw survival of the fittest, this is my kid.

But I feel like this horrible thing reinforces the care and support he needs and that we need, and will hopefully open a discussion that will help all of the children in the school.

We were going into our meeting to see how all of us could work together for Alex’s benefit. Now I feel we have to fight for a basic need of all of the children, so they can learn in safety and in peace.

I need to calm myself, meditate, write down our game plan for talking to the principal tomorrow.

Perhaps we will have a more focused path after the discussion tomorrow.

I can hope though, that’s all I’ve got right now. Hope and Alex.

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