Archive | January, 2009

Alex’s Wishes.

29 Jan

Alex is back at school today. We had a good meeting with his principal to discuss safety, Asperger’s, and helping him and she had a brilliant idea. She is going to talk to his teachers about changing his school schedule, not because of what happened on Tuesday, but to give him more space and attention, so his sensory stuff won’t be the focus, and he can flourish…. He seemed a little better today, I sent him off with his qcharm bracelet (will blog more later, it’s pretty cool) and hugs, and I printed out a social story on bullies. School apparently thinks this is an isolated event. I hope they are correct. They thought the boys were just playing rough. I mentioned the foot prints on Alex, and we had a good discussion about playgrounds, bullies, and kids who can’t understand intent.

I have been meaning to share this with all of you… This is a note Alex wrote to his Dad when his Dad was up in Boston in November, visiting his dad/Alex’s Grampy (he has lymphoma, but at that point he was in ICU barely holding on, so we got hubby up there as quick as possible to help his family and be with his dad)…

Alex may not understand people’s intent. And he is not so good at reading facial expressions, subtext, that sort of thing. He is very black and white, not a smidgen of gray area.

He does understand: Happy and Not Happy.

He wants us to be happy. We do our best to make sure he knows that any tears, any anger, and crankiness is not because of him and we try to show him and tell him that we love him and that he belongs here with us, in our family, and that we are a team. He knows we love him and that won’t go away.

But he does know when we aren’t happy. It’s a reminder of how kids read the undercurrent of emotion in a household, in a family, between parents. If my kid, who has difficulty with social communication, can sense this and simplify it so that it means something to him, how are (for lack of a better term) neurotypical kids understanding what our families go through all the time, but especially now in this time of great strain in our world- how are they perceiving family security, relationships, economic hardship, violence anywhere? I half watch the news every night and if I had to sum it up in Alex’s terms I’d say “not happy” would be the state of the world… Hope is everywhere, change is upon us, but change is difficult on everypart of our bodies, our minds, our families… It takes time. But as a point in time I’d have to say “not happy” seems to be everywhere… The principal mentioned that everything- the general vibe, the volume, the attitude- has changed at school. She thinks the kids are feeling the changes in their homes, the worries, the strife. I believe that.

Anyway, Alex knew Grampy was very sick, so every night we blew wishes (kisses, but he tends to hear things a little off…like playing operator) and they flew up to the ceiling, got caught in the current of the ceiling fan and flew to the door…I’d open the door and out they would fly to the universe to make the universe happy so it could help Grampy. Pretty fantastical and abstract, but there are a few things he takes, in his rule based world, as fact. Blowing wishes and holding them and letting them go when someone needs the help of “best wishes” is fact, it’s real. And it is soul soothing for both of us.

Alex wrote this note to his Dad. He announced he was going to write his “rules for Daddy”…

Here they are:

Alex's Rules for Daddy.

Alex's Rules for Daddy.

Yesterday, when we returned from school and the post-meeting trip to Target (out of printer ink and diet dr. pepper…yes I admit it. I can’t function without the stuff and I don’t drink coffee and some days tea does not cut it as much as I love love love tea), he wanted to use my little stapler that had been relocated from the fridge (magnetic everything!) to my nightstand as I had been in bed organizing his papers earlier in the day. So I sent him to get paper and he came back with his little notebook (that I forgot he had…he has a big guy journal he writes in on occasion, but this one has been around since he was a baby…it was his blues clues notebook for a while, but we kept forgetting it) and showed me that he wanted to staple the letter he wrote. He managed to get two staples into the sheet and still wouldn’t listen that staples are connectors/fasteners so I decided to give him a visual demonstration and I asked him for the paper.

While Jeff and I were in the kitchen talking, when he was hanging out in his room listening to his Ode to Joy CD, after the playground thing, he wrote this in his notebook:

Letter to Mama and Daddy

Letter to Mama and Daddy

“They were not being happy. Please be happy. xo Alex”

It doesn’t seem to register to him that it is ok to be unhappy. I have tried, and will continue to try, to instill in him that a negative emotion is a sign that something needs to change- something major or something minor- that it’s a sign (I call it a green light) to figure out what and why something is making one not smile and a point from which to make things different and better. Sounds more complicated than it is…Basically, I’m giving him the tools to break things down so he can understand them better- the tools to see the colors that make up the big picture. Again, sounds more complicated than it is. We have seen moments of it working, one of the techniques is writing or drawing…

This was what he wrote… We are worrying about him and he is worrying about us.

So we are breaking it down further, and we do need to find a better way to help him understand that he makes us happy, but that’s not his job and that he brings us great joy, but he isn’t responsible for bringing us joy.

I guess I just don’t want him to feel like he has ever failed us. I don’t want him to waste his time feeling responsible for our happiness, I rode that treadmill for over 30 years until I finally realized I had to get off or I would lose what was left of me, I don’t want him to ever feel that…. I’m digesting the shame and confusion he has felt since the incident on Tuesday and it is paralyzing (and dehydrating). I asked him about the playground and the kids and their faces and their words and he blushed. He was embarrassed about it. I have never seen his cheeks rosy other than from exercise.

Unfortunately, his take on this is that the kids were happy they were hurting him.

But he knows he is sweet and smart and funny and kind and cute. He cannot connect why they hurt him to anything and takes it as fact, like just being happy to hurt him makes it an acceptable reason.

His teacher said this morning that she didn’t know it had been that bad on the playground as he sat and had lunch and didn’t cry or say much of anything. Then again, she doesn’t know the shell he disappears into as well as we do. Perhaps now the lines of communication and the potential for education will be wide open…

Hubby just left to go observe playground time…

Fingers and everything else crossed…

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.

Tea-tastic!

27 Jan
Old Man Tea

Old Man Tea

Alert!

TeaNoir.Etsy.com is moving!  No, not away from etsy, I mean in real life!

So, to focus on her move, the teamistress has announced a temporary closing of her etsy shop!

What does this mean?

Stock up now!  She will be taking new orders until January 30th!

Get enough to last a month! I know I did!

Like black tea with a little spice:  Maltese Falcon (black tea and ginger root! perfect balance)

Like something sweet and fruity:  Juicy blends sweet lychee and black tea

Traditionalist:  Earl Black is a perfect blend of black tea and bergamot

Need some kick and some mellow: Victoriana combines a fabulous black tea, bergamot, rosemary, and lavender for the perfect afternoon cup- enough caffeine to get you through yet make it a very chilled out, zen zip…

Like chai?  TeaNoir’s rooibos blend “Red Hot” offers a delicious decaf dose of sweet, spicy heat! I actually like this with milk, instead of hot chocolate as the perfect blend of spice really soothes the aches of winter…

Now go explore!

By the way, this picture was the weird old man swallowing his own chin guy (or Robin Williams sneezing…we have narrowed it down that much at least) that showed up in the bottom of my cup last year…(just in case you were wondering)…

So stock up and hopefully TeaNoir will be back after a speedy and stressfree move!

xo

Bek

I love you with all of my…

22 Jan

I always wanted to make sure my child would know that I love all of him.  There are no conditions on my love for him.

I did not have that sense when I was growing up and I was told more than once that the parental love I was receiving was completely and utterly conditional. This is not an assumption, on my part, but a spoken fact. “My love for you is not unconditional”.

Anyway, I love my little boy unconditionally.

When I was pregnant with Alex, we had an ultrasound that indicated almost every marker for various chromosomal abnormalities, some of which are incompatible with life.

While we waited the three long weeks for the results of the amnio we sat and we thought. I cried. I think that almost six years later I am still a little dehydrated from those three weeks.  I couldn’t speak to anyone, not even my husband, Alex’s dad.  I did speak to my mother before the fear and sadness really sunk into my bones, and while I explained and broke down, I was called stupid and told that the only option was to terminate the pregnancy and that I shouldn’t be cruel, I should do it immediately and not wait for the amnio results. She ordered me to stop crying because the chromosomal abnormalities were my fault (unconfirmed abnormalities at this point, unrelated to any available family history or parental health conditions) and that I should accept my role as parent and terminate rather than make this child suffer further.

Between the tears, and the long naps, and the anger, I did some research.  This time period really defined me- the mom.  Everyone hopes and everyone dreams and most prepare for a healthy, perfect baby.  We all know that doesn’t always happen.  We all know that the best laid plans are frequently rerouted, rewritten, torn up completely and replaced by newer dreams that are sometimes shinier in very hidden, and very arduous ways.  This was when I learned that love doesn’t mean caring for someone in health only, which is a lesson I had learned first-hand years before, but it took this to understand the enormity of become a parent, the hopefully never-ending-ness of it.  And I learned that from both sides of the loved one and caregiver relationship during those few months, and since, in sometimes joyful and occasionally heart-smashing ways. I have learned to pick up the smashed pieces and reconnect them in new ways, a crazed mosaic of hopes, dreams, and love.

I realized that my parents were the one who could not accept damaged goods, damaged people.  I realized that my ability to love was not destroyed by the love that was conditionally given and taken during my 27 years (at that time).  It was then that the tears dried up (briefly, I am an emotional gal) , I pulled on my fleece slippers (my ankles were swollen, I couldn’t wear my combat boots or my ass kicking heels), and we figured out our plans. We figured out our formulas, our conditions, for how we would handle the information that the amnio would return to us.  It had everything to do with unconditional love and respect.

In a few months that revelation will reach it’s 6th anniversary.  The scare, the waiting, the distress, the crash course in everything from DNA to femur length to a parent’s love for their child, was an accident.  It was a terrible accident, due entirely to a scheduling error, as the test that set off the need for the amnio, and the horrible waiting, was scheduled too early.   I am grateful, though, that we were forced to define the why of our desire to become parents.  That ‘why’ still guides me when trying to determine our next step in helping Alex and helping our family, it is my personal mission statement, my grand goal for my parenting of Alex (which I will share in another entry, at another time).

Everyone says, before they have kids, that they will parent differently… I’ll never this, and I’ll never do that… The errors of my parents, so clear in my current year, are grand and horrible and shocking. I know I will and have already made mistakes that perhaps Alex will remember or only notice when he is in his thirties. But my hope is that he will know that I am human, and flawed, but that everything I did, I did with unconditional love for him, all of him.  I will never allow a day to pass without letting my kid know that I love him. No matter what.  I will never judge him based on what he cannot do, or punish him for his quirks, or demand that he behave more like so-and-so’s child (who is not Alex, not in any physical, cognitive, or emotional way).  I will provide the encouragement and support that he will try without fearing failure to such a paralyzing extent that he cannot try, so that he will have opportunity to succeed (can’t have one without the potential for the other).

Ok, onto the picture of the day…. With his PDD/Asperger’s, Alex is fairly inflexible regarding many things- word usage is a big one.

I have always told him, “I love you with all of my heart, all of my soul, and all of my brains too”. He giggles at this and replies “Brains!” in a way that is a little unnerving in a darkened bedtime room, coming from a kid who has never even seen anything zombie related (although we do have the Zombie Survival Guide, which was one of the funniest and coolest baby gifts from a dear friend. Thanks Ig!).  A little over a year ago I started replacing “brains” with other words, I do this sometimes to see if he is paying attention, and also to show him that a little flexibility can be funny and sweet and not distressing.  It’s best to do this sort of thing when he’s all blissed out on bedtime stories, lullabies, and good night kisses.

“….and all of my cranes too”

“…and all of my trains too”

“…and all of my drains too”

And he has always corrected me.

After school today, he played with his old Brio trains for a long time (so long that I went to check on him and his dad, as in our home “don’t worry unless you don’t hear anything” is part of our parental code)…

I had retired to the bedroom with my laptop and some tea and was typing away when I saw him at the door.

Trains

He had an armful of trains.

I put the laptop aside and he dropped a pile of trains on the bed with me.

“Mama,” he said “I love you with all of my trains.”

He was so proud and so happy. He is so literal and wonderful.  I was trying to help him and really he found a way to meet me in my goofiness.  In my heart I know he is still protesting my playful use of incorrect words and terminology, but that he ran with it, for just a moment, and put his own special signature on it.  And that gives me hope and strength and a warm, happy heart.

At the end of the day, it’s not about what we don’t have or about a loss of dreams.

It’s about the heart, the soul, the brains, and most definitely trains.

xo

Bek

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