no good, very bad day

It was one of those days when things just seemed to keep going the wrong way.  The water heater finally gave up on life.  Much book keeping and accounting needed to be done and redone.  Ugh.  And then, G had a breakdown at his friends birthday party.  You might think I'd be most upset by the major appliance failure or the utterly dreaded book keeping fiasco, but you'd be wrong.

The party was at a museum and we thoroughly enjoyed looking at dinosaur bones, doing crafts and a few songs.  G was happy to wish his friend a happy birthday, meet some new people and check out some exhibits.  Then G saw the collection of presents.  His friends' mom had told me "no gifts" so I was unprepared for that and so was G.  If I had known ahead of time I might have been able to prepare him, but I didn't and he wasn't.  He insisted that he wanted the orange car he saw peeking out of a bag.  I explained we had plenty of cars at home and we would try to find an orange one when we got there.  It was a futile attempt.  He began crying and insisting it was his own birthday so he could also have presents.

We stayed a few minutes, trying to calm down and finally went outside to cry for another twenty minutes or so.  Finally he calmed down enough to go back and join the group, only to have well-meaning people try to talk to him and encourage him to be happy which sent him off into another bout of uncontrollable tears.  I got our bag and went downstairs.  He eventually calmed down.  We met the kids coming out and he said thank you and I said I'm sorry.  We walked down the hall and met G's dad and I dissolved into my own fit of tears.

It shouldn't be so hard, surprising or painful.  But sometimes, it just hits me head-on.  My boy doesn't know all the rules.  I try my best to teach him, but there are many many things he just can't grasp.  What's a yesterday, for example, and why on earth would I want to talk about it?  My birthday's in the summer... what does that mean, besides no presents now?  The word because... what's that all about?  There's so much more, mostly the abstract kind of things, like time.  It's really frustrating for G to live in a world where the rules don't make sense, or just seem plucked out of nowhere for the occasion.  It's also really frustrating for me to try to bridge the gaps, and when I fail, to try to scrape some sense of togetherness and understanding we can share so the world doesn't feel so harsh and cruel and random.

Today I was sad for G, that he couldn't enjoy the rest of the party and that he couldn't understand and make peace with his friend getting presents today.  I was worried about G causing stress or unhappiness for the other kids and parents at the party.  And, I was embarrassed.  And then guilty about feeling embarrassed.  I understand where things went wrong and I don't blame him, but sometimes I just want things to be easy, without the need to explain. I shouldn't be embarrassed.  What's wrong with me?!  I love this kid!  My buttons are bursting, I'm amazed by how much he's learned and how many steps he's taken toward the world most people inhabit.  And yet, an afternoon like today comes and I am the one who is unable to function because of communication barriers.  I am the one bawling in front of the ancient pottery shards while my now happy, curious boy wanders around drinking in natural history.  I need to remember I'm a work in progress as much as my boy is, and take a few minutes here and there to think about where I am, who I am, who I want to be.

We came home and talked about it.  G looked off to the side, obviously uncomfortable.  I don't think if we went to another party tomorrow it would be alright, but if we talk it through enough, tell stories about birthdays and friends and parties, we're bound to get there sometime.  I asked him to look at my eyes and listen while I told him I loved him.  Now I will have tiramisu and hugs and hope and prepare for a happier day.

the best pinecone

It's the last day of the school week and all the kids are tired.  G and his friend (I'll call him Joshua) are rolling down the hill after class lets out.  They find pinecones and roll those down.  After a long twenty minutes of happy playing and successful sharing, trading and taking turns, there is a moment when they both reach for the same pinecone.  It's a particularly nice one, very rich brown and intact compared with the other greyish, tattering pinecones.  Neither or them is practiced at sharing but they are both working on it.  Joshua grabs it first.  G looks upset.  Joshua looks equally grumpy.  Joshua haltingly holds out the pinecone in his hand for G to take but as soon as it's in G's hand Joshua starts wailing.  Joshua's dad and I try in vain to help prompt compromises and soothe overtired, overexerted 4 year old friends.  No other pinecones will do for either boy.    

In the end each of us carries a crying boy across the playground and down the sidewalk to the parking lot.  G begins to quiet a few times, but hears Joshua and starts again.  I ask if he wants to say goodbye to Joshua and he says no.  We arrive at the car and he calms down a bit, asking for a hug.  I pick him up and hug him and ask him if he's sad because Joshua was upset.  He tells me: G and Joshua sad.  (This is big!  He isn't usually able to talk about more than one person's feelings at a time)  I buckle him in his seat and he says: Show Daddy G and Joshua sad.  Sometimes G wants to show Daddy an art project or other preschool treasure when he gets home.  The idea of telling his dad about something important that happened to him, especially involving feelings... what a breakthrough!

I spend the entire car ride home fantasizing about G telling me stories of what he did at school today, how his friends feel about white and red striped race cars, how he came to be under a beanbag when a classmate sat on top of it (I heard that one from his teacher who thought it was funny and was concerned I might wonder how he got a scratch on  his forehead.)

We get home and G runs into the house, still intent on telling his important news to his dad.  I am thrilled.  G and Joshua sad.  Roll down hill, throw pinecones down hill.  I wait as he talks, then fill in the blanks.  Then I remark to my husband how lucky he is, to actually be hearing news about what happened at school from G, and that it's bigger news than just what flavor muffin they ate today.  We all beam at eachother for a moment before G starts begging to play computer games.

persevere. symptom? heroism?

Perseveration.

• the tendency for a memory or idea to persist or recur without any apparent stimulus for it
• the act of persisting or persevering; continuing or repeating behavior

   It's a new word to me.  I heard echolalia two years ago for the first time.  These words were both revealed to me in reference to my son G.  He started using echolalia (repeating the words he hears over and over) about the time we started going to speech/behavioral evaluations to try to help him build his verbal language skills.  I was completely unconcerned.  It was obvious to me (the person who is with him every single day of his life so far, watching him, holding him, listening to him, talking to him) he was working at building his language.  He was repeating everything in order to understand it, to learn how to use the words himself.  It wasn't too long before he was no longer using echolalia all day long.  The therapists, however, saw the echolalia as a problem.  "He's stuck."  "He doesn't understand."  "We should fix that."

I use my own experiences as a compass on this journey.  It's all I have.  They are usually not too far off the mark.  When I am working through something I perseverate.  I replay a conversation over and over in my head.  I change things, look at all the angles.  Remember what each moment felt like.  Imagine what the other person was feeling at each moment.  Think about changing things.  This is what I do when I feel helpless, when I feel lost, when I feel like angry.

My gut tells me this is what G is doing now when he perseverates.  He is working on things.  It may look, feel and be an enactment of being stuck.  But it means he is thinking and feeling and working.  This is good.  He is growing, even when he is also pushing hard and going nowhere.

I think it's fascinating how perseveration is a problem, but perseverance is one of those words you might find on an inspirational poster.  They are so close.  One is a heroic act, celebrated, the other a symptom.  I don't buy it.  I think they are two sides of the same coin.  One the one hand, G and I have these horridly upsetting conversations that go around in circles and don't resolve as he says the same phrase or question over and over.  On the other hand, as we are having the looping conversations I believe that we are both trying to find ways to slow down the momentum, to find safe passage to resolution.  I may not be able to "change the topic" as a therapist put it, but (in my mommy heart I believe) that's not what he needs now.  He needs to resolve the spinning so that he can change the topic.  He needs to understand, not just memorize the next step in the conversation.  And the way he will get there?  Endless repetition.  I'll be there with him.

Many horribly miserable conversations with G have been retold in positive and happy new ways since I have been able to understand him better.  Now I now that he has a hard time understanding "not", I can rephrase what I say so he can take it in.  Example:  In the car on the way to school he takes a toy airplane he loves.  Before I would say, "G, you can't take toys into your class, okay?"  He would scream and throw the plane in frustration.  He didn't understand the rules.  He needs (like we all do) to understand the rules to feel confident and comfortable, to trust.  Now I say, "G, when we get to school you leave the plane in the car, okay?"  He looks at me and puts the airplane happily into the pocket of his carseat.

The hardest conversations right now involve time.  "Not tonight."  "Maybe later."  "In a little while."  "Tomorrow."  He seems to sort these responses into two columns... yes and no.  He counts my facial expressions, my tone, my enthusiasm as part of the response because he doesn't understand most of those phrases up there.    He asks again.  I repeat myself.  He asks again, this time looking angry and sad.  I say "I'm sorry; we can't right now.  I know you're sad."  I put my arms out in an appeal.  He pushes me away.  I stay and bear witness to his misery.  He puts his arms up for me to pick him up.  I hold him and tell him I'm sorry.  He asks for me to wipe his eyes, wet from tears.  I say "Okay." and wipe the wetness from his face.  I desperately hope he knows I am there with him, even when the language barrier is too high to scale.

One of the things about G's otherness that scares me the most is this:  There are things about G that I believe he would like help to overcome.  There are other things about G which could be called other or strange that I believe are who he is and are beautiful and good.  I want him to keep these parts of himself safe.  I want him to treasure and revel in who he is, not water it down, hide it, make it fit into some other person's expectations.  It's sometimes hard to figure out which is which or stop and ponder if I am trying to "fix" something because it is causing harm to him or because other people don't understand it.

What I want most for G now and always, is that he will be happy, that he will understand himself and other people, that he will love himself, that he will let himself wholly be who he is.

special

Since having a kid who other people categorize as Special, I have come to loathe the word.  I used to feel much more ambivalent.  It was present in my childhood as either a slightly embarrassing compliment from relatives or teachers or as a taunt from other kids who didn't understand me.  It was, a few times, hurtful, but mostly just an occasional reminder that I wasn't the status quo in my classrooms.

Now, it's used to describe my kids' education, my kids' peers, my kids' difficulties.  It represents his differences from everybody else.  Special needs, special education, special services, special classrooms, specials.  Oh, how that word rings in my ears, mocking my attempts to show off my beautiful, smart, amazing child to the rest of the world.  It could be worse.  I just wish that labels weren't so prevalent and so quick to pile up on kids who may be affected by them for the rest of their lives.  I wish my kid could be known by his name, not his abilities/disabilities.  If I had a vote, I would write in "Alternative Education" as a replacement for "Special Education".  It seems less loaded.  More realistic and less candy coated.  Special as a word to describe kids who have extra difficulties, worries, hardships, challenges seems to be trying to turn something people are uncomfortable with (being obviously different) into something warm and fuzzy to make it more palatable.  But using a sweetened-up word doesn't make being different less scary or loaded with negative feelings and images.  It's just more off-base.  More dishonest.

Not too far in the distant past, I turned down a diagnosis for G "just so he can get the insurance coverage."  It's a hard situation to have to choose between labels, and help paying for services to help your kid.  We could afford to pay ourselves so I chose not to have (in our case) unneccessary labels tied to my kid.  The thing that amazed me the most about that particular story though, was when I told another evaluator about it several months later and she expressed in disapproving surprise that she'd never heard anyone say they were doing the same thing.  I'm betting she's met others.  They just didn't tell her about it.  I will go out on a limb and say I don't think many parents like labels and diagnoses put on their child, and even less so if they aren't accurate or descriptive of the actual kid.  I don't mean that they aren't useful, important, helpful and neccessary in many cases, just that sometimes they aren't.  It shouldn't be taken for granted, like it has been a for us a few times.

The combined classroom (kids who are receiving special education services and kids who are "normal" in the same class) G's in now is a gift to everyone in it.  The Autistic kids, the kids with partial deafness, the kids with Cerebral Palsy, my son with Auditory Processing Disorder- they are learning so much from watching and interacting with the unlabeled kids.  And those regular ed. kids- they are learning so much from the kids who are in special ed.  Learning from one another, learning about one another and ourselves, learning how we are all similar and all different- I wish we all had as much ample opportunities for these things as the kids in G's class.  That really is special- the way I think the word should be used.  Important.  Worth recognizing and striving for.

speech delay at 3

When we took G in for the first in a series of evaluations for his delayed speech, more than one professional told us that our kid avoided eye contact and interactions.  They told us in longer and less clear words that he didn't want to communicate with us, that we should encourage him to interact with us by making it more fun.

I tried to tell them that my boy wanted to communicate with us, his Mama and Daddy.  He was desperate to communicate.  I tried to point out that most kids wouldn't give great eye contact when they are faced with an entire wall of toys they have never seen before.  I tried to tell them that he was different at home.  I tried to tell them that I was an oddball as a kid too... that I just wasn't on the same wavelength as my classmates.  (One woman actually made a joke out of that.  I still get angry when I think of her.  The same woman said, "Oh, he will definitely qualify for special education, don't you think?" and I had to hold back the tears until we made it out of that office. )  I tried to tell them that what they were seeing that was good, it had been built up recently.  He was making progress.  I tried to tell them that he loves to talk, the little he can.  He begs to communicate with us.  He doesn't like playing on his own forever.

They didn't see the same little boy I did.  Sometimes I want to take him back, to reintroduce them to him.  They would be amazed.  How could they not be... they thought he was uninterested in interacting with people.  I want to teach them about my boy, for the other parents sakes.  So maybe sometimes, they could listen to the parents perspective without casting it aside as denial or grasping at straws.  So sometimes, they might take a little more time and see a little more of the person growing in front of them.  Four out of four of the first professionals to meet our son suggested he might be on the Autism spectrum (because they couldn't say for sure that he fit that diagnosis and they couldn't think of other possibilities) and then got defensive when I asked pointed questions about Autism, expressed my doubts and asked if there were any other explanations for his language difficulties.  I did an unbelievable amount of reading about kids with early language delays, and about Autism and every time I read a description of it, I thought that doesn't seem like G.  But it kept coming up in the evaluations.  And I kept reading more, wondering, doubting, refusing to swallow that the thing causing his speech delay was something that he fit very few of the usual signs of.  He has since been diagnosed with Auditory Processing Disorder and we have very definitively ruled out Autism.

The truth was, at 3 years old, G had begun to give up.  To give up on us understanding him and understanding us.  He was angry.  He was scared.  He was sad and lonely and very very frustrated.  And he couldn't hear or understand a lot of what was said to him.  That's why there wasn't as much eye contact as there "should be".  Not even as much as there had been when he was younger and more oblivious to his isolation due to the language barrier.  We kept looking for an explanation that made sense.  We kept reading books, signing in ASL, acting things out, getting in his face while talking to him.  We kept hoping to understand what was going on in his head, and what he wanted to tell us.

He's 4 and a half now.  He can describe things.  He can ask for things politely.  He loves choices.  He loves us and tells us so frequently. He makes wonderful eye contact if he hears us.  He mishears words.  He gets lost if the sentences are too long or involved.  He gets frustrated when he needs to express negative emotions other than sadness.  He likes to tell his little sister what to do and what not to.  He can tell anyone his name and age.  He can navigate anywhere in the city by telling me which direction to turn the car.  He is mostly toilet trained.  He plays hide and seek with friends.  He doesn't understand days of the week.  He has gone from the language level of an infant (at just under 4 yrs old) to just under the language level of his neurotypical peers (at 4 1/2).

Look out world, my boy has a lot of things he wants to tell you!

I believe that the best expectations of what a child will and won't be able to do come from their parents gut feelings (not the horrible worst case scenarios and doubts my mind ran through over and over when faced with uncertainty and bad news about G.)

can't you see I'm working here?!

G dearly loves to play on the computer.  Pbskids.org is one of his favorites and he would happily spend oh, probably twelve solid hours trying new games, browsing, playing his favorites like "the boat game" where he steers a raft down a river filled with boulders, piranhas and countless other potential things to bump into and *gasp of horror* slow down. It's almost always a battle to get him off the computer for dinner or a trip to the grocery store and he usually ends up angry and sad.  He gets through it with several hugs and five minutes or so to readjust to the world.

His dad and I both work on computers, from home so he hears us say "I'm working" fairly often.  I was still completely shocked to hear him answer my question "What do you want to eat for dinner?" by saying "I'm working!" in a sort of Mo-om, I'm doing something really important here... Can't you see my cartoon bunny is halfway through jumping up various ledges to the treasure?! tone.  Whoa!  I was annoyed and amused and proud all together.  I mean, what an attitude, right?  But, hey, G has never never sassed me before.  He's told me no, and pushed me and told me to stop... but "I'm working" took quite a bit of finesse and style.  He's so limited in his language that I see sass as quite a breakthrough.  We celebrate it all, even the things I'm sure I'll be banging my head on the wall because of in no time at all.

So I smiled for a second, and then I reminded him that "I'm busy" would be a more appropriate way to tell me his purple jumping bunny cannot stand to wait while he answers my pesky questions about dinner options.  Then I decided next time I want to tell him that I'm working, I should really reconsider.  It's definitely making an impression.

she rocks!

A few days ago, we are entertaining guests in our front room.  G is putting together puzzle after puzzle and L is doing acrobatic feats such as performing splits on the arms of the armchair.  She wanders around a bit and ends up swinging between the couch and a table, one arm on each, holding her feet up and swinging back and forth.  Someone says "Are you rocking?" L responds enthusiastically, "I rock!"

She certainly does.