Barnmaven

Spilt milk

The laptop I bought on closeout for the kids resides on my breakfast bar. 

When its not being used to play Minecraft or  watching Justin Bieber and (shudder) Ke$ha music videos,  it becomes a resting place for one cute gray polydactyl kitten. Did you meet Hemingway yet?  No?  Here.  Readers, meet Hemingway. 

Hemingway showed up in our garage about two months ago during a several week cold snap when the outside temperatures were hitting single digits.  I opened the garage door to grab something out of the box freezer early one morning and a small furry gray shape went darting away from me and under the car.  It was small enough to be either a very small cat or a very large rat, and it was dark enough for me not to be able to discern which. (Yes.  I screamed.  No.  I am not ashamed.) 

I woke up SG who came out to help locate and identify our newest houseguest.  It took a little while but eventually we heard a very very tiny "meow" from behind the luggage.  Hard as we tried we could not catch him and couldn't get him to come to us, so we started leaving the garage door slightly open and putting out food and water for him.  We worried about his survival because he was so small, but every day the food we put out was being eaten, so we knew he was alive.  I finally got someone to loan me a live trap and we put the food dish inside it.

Three nights later we managed to catch Coco, who was extremely unhappy with us over it.  I reloaded the trap and forgot about it for a couple of days until SG went to get something out of the garage one morning and came back in the house with the trap full of a frantically meowing kitten. 

Now I've dealt with feral cats before and they are notoriously opposed to being handled, so I fully expected to open that trap and have a spitting, hissing, clawing, ANGRY kitten come barrelling out of it.  Instead, a little gray and white furball ran right into my arms, purring and rubbing against me as if he'd been waiting for me his whole life.  I suspect he was very cold and very lonely and happy to have someone warm to cuddle with.  He crawled up my shirt and it was then we saw his six-toed front paws and both SG and I knew he would stay with us.  The name choice was obvious -- Ernest Hemingway is one of history's more famous Polydactyl cat fanciers, having been given one by a ship's captain.  Polydactylism is a dominant trait, so that first cat became the founder of a large polydactyl cat colony.  Hemingway's estate in Key West is currently home to around fifty descendents of that first cat.  Polydactyls are thus commonly referred to as "Hemingway Cats."

(Hemi is the second polydactyl kitty to enter my life, and rather coincidentally, the first extra-toed kitty I had was also a gray and white boy I named "Crash Davis" after Kevin Costner's character in Bull Durham.)

Hemingway's origins are somewhat of a mystery to us.  We are not aware of any feral cat litters in the neighborhood and none of the neighbors reported a missing kitten.  He couldn't have been more than seven or eight weeks old based on his size, and his friendly nature isn't indicative of a feral litter.  Regardless, he's part of the family now.

Yesterday I had to stay home from work to get an emergency crown on one of my back molars.  Turns out 20-year old fillings have a habit of undermining the structure of your teeth, as I unhappily discovered at dinner on Saturday. 

Hemingway was snoozing on the lid of the laptop on the counter as he is wont to do nearly every day when the kids aren't using it.  If they leave the lid open he will walk and nap on the keyboard, which has mixed results -- either the laptop freezes up, which sends the kids into a frenzy when they try to use it later, or it sends out undecipherable emails to equally undecipherable addresses and opens odd websites. 

I managed to snag an appointment to get my tooth fixed, but when I went to leave the house I could not find my keys.  I spent a good ten minutes tearing the house apart looking for them.  As I was frantically searching the kitchen counters. I lifted up a sheaf of papers on the breakfast bar, startling Hemingway out of a sound sleep. He levitated straight up, then landed with scrabbling feet on the counter, knocking over a glass of milk that Race Car Man had left unfinished.  Now I not only couldn't find my keys, but a pool of milk was widening under the mouse, the laptop, my envelope with all of our tax paperwork and my Blackberry.  Heavens to Betsy! 

I clutched my Blackberry to my heaving chest, scooped up the laptop, gave it a cursory wipe, then threw a wad of paper towels down on the rest of the puddle and continued on my search for car keys.  I finally did find them on the workbench in the garage right next to the driver's side door of the car; I must have left them there when I got home from dropping the kids off at their bus stop.  I have no idea why I would have done that, except that I have been completely discombobulated ever since my tooth fell apart.  I was already late for the dentist.  After four hours in the chair getting my new crown installed, I completely forgot about the milk mess.

Last night when Race Car Man went to play on the laptop he gave me a round tonguelashing over the sticky mouse and milk-speckled lid which I had failed to finish cleaning.  Sensory issues and sticky things are an endlessly bad matchup and typically grounds for screaming exceeding the sound barrier, so I count myself lucky he was only Complaining Loudly. 

I wanted to tell him, "There's no use complaining over spilled milk," but I don't think he would have appreciated it.  At least the laptop still worked.

I Need Some Wind for my Sails

Its the end of another week and I am so pathetically grateful to not have to get up tomorrow and put one foot in front of the other while pretending I have it all together I could cry. 

The stress of fending off the world seems to be cumulative, and yesterday I got the good/not so good news that SG might be staying longer on this Nebraska job.  Yay, because its more money into the pathetically empty coffers, but really, BOO because he won't be here for Thanksgiving and I'm so lonely and so tired of dealing with everything and not having my husband at home to sit down after a long day and talk to over a nice glass of wine.  I still have the glass of wine, but the dogs are less interested in hearing about my day than they are in having their dinner RIGHT NOW PLEASE.  If it wasn't for the evenings I get to stop at my parents and visit before I take the kids home I think I would give up the attempt to stay sane.

My struggles pale in comparison to what's happening over in New Jersey and the outside buroughs of New York City, so I should quit complaining.  No matter what's happening in my life, there's someone somewhere dealing with something a hell of a lot worse.  See?  Mindset changed.  Gratitude abounds.

Mr. Race Car Man had a good start to his school year, but has been struggling the last few weeks.  His good days still outnumber his bad days. Last year he had to earn the letters K-I-N-D-L-E by displaying expected behaviors.  If he earned all six letters, he got to either play on my Kindle Fire or play games on the Wii.  This year, since he's older and has gotten better with his skills, his teacher upped the ante and now he has to earn the letters P-L-A-Y G-A-M-E.   If he doesn't earn all eight letters he doesn't get Wii at my house or Playstation if he's at his dad's.  Since he's absolutely mad about gaming, this is a very big incentive for him to master his behaviors and his responses.  He earns his games more days than he does not, but the days he doesn't are really tough days, not just for him but for his teachers and classmates.  Monday morning he decided to run away rather than get on the bus, and my friend Debbie who watches them in the mornings, the aide from the bus and my daughter had to go on a merry chase around the neighborhood to catch him.  The upside of having a very tall and strong daughter is that she was able to nab the little turd and carry him on to the bus.  He then went on to have a very rotten day at school.  I hate those days, because he is so upset and fixated over over not getting to play his games.  Eventually he can be distracted, but he's got to go through his process of coping and folks, it ain't fun.  I feel bad for him, for his classmates, his teacher, and for those of us at home with him.

Fortunately we already had an appointment scheduled with our psychiatrist for Tuesday morning.  One thing I like about our psych is that he doesn't just ask me questions, he asks my child questions and carefully responds to him.  Throught a very calm and methodical interview, we were able to piece together some of the things that were going wrong for Race Car Man at school.  He is having great difficulty focusing in class.  He is very easily distracted by other students physical and verbal behavior.  This frustrates him greatly and makes him more likely to have difficulty controlling his behavior.

The psychiatrist made a med adjustment which we started immediately, and so far it seems to be helping.  Two fantastic days in a row doesn't mean as much as a couple of good weeks, so I'm not going to commit to saying "it worked!" -- but I'm encouraged. 

He can be such an engaging child.  A lot of adults we encounter who don't know he has autism, if he's having a good day, are usually charmed by the way he interacts with them.  He loves to explain things, and with his extremely detailed memory and his love of reading information books rather than fiction, he can actually converse about a lot of things.  Combined with his extensive and very precise vocabulary, he seems far beyond his years. 

I wish he'd eat, though.  We weighed and measured him at the doctor's office.  Since last school year he's grown three inches but gained no weight whatsoever.  I can't find pants to fit him that don't leave his ankles and half his shins exposed.

One of his favorite new activities is to brush his sister's hair.   Its almost to her waist now, and I found a special brush at the local beauty supply that lives up to its claims of being "ouchless."  He will sit behind her in the chair at my desk, and while she plays a game he brushes her hair.  Whenever they do this my heart just melts.

So things aren't as good as they could be and they aren't as bad as they could be.  I just feel drained right now and unable to cope with even the smallest setbacks.  Maybe Race Car Man isn't the only one who needs a medication change.

 

With or against the current

I noticed a post while idly cruising Blogher written last week by Emily Kingsley, an autism mom who blogs at Our Holland.  Blogher featured one of her posts, a reaction in writing to an encounter with a woman who doesn't believe children with autism should be mainstreamed.  At all.  Because she believes its "not fair" to the normal kids.

The post itself had my hackles up, but reading some of the comments has got me feeling indignant as well.  Of course there were a majority of commenters who expressed their outrage at such outright ignorance.  But there were a few commenters, especially one in particular from the Facebook stream, who also believe children with autism or other disabilities don't belong  in the mainstream classroom.  "They're a distraction," said one.  "Its not fair to the other kids," said another.

I simply do not accept that these parents' children have more of a right to an appropriate learning experience than my son does simply because he has autism and they don't.

I believe that my son benefits when he is in his autism classroom AND when he is in the mainstream classroom for academics.  I also believe that the time he spends in the mainstream classroom benefits his neurotypical peers.  My belief is somewhat instinctual, but it is also an informed belief based on results and research.

Someday my son will be an independent adult.  He will need to function in a world where the majority of his coworkers and peers are neurotypical.  His time in the classroom and on the playground with his mainstream peers gives him many opportunities to learn the behaviors that make his interactions with others less frustrating and more rewarding.  The time he spends learning how to interpret social cues and how to interact appropriately with other people his age enhances his ability to succeed not just now, in school, but later in life as well.  This has been our experience, but various studies over the years on inclusion programs statistically support inclusion.  Children with autism who regularly interact in a mainstream environment (with appropriate controls and support) show marked improvements in their social skills and peer-to-peer interactions.

At the same time, spending time with other children who share many of his differences provides him an environment where he fits in.  In his other classroom he is less likely to be bullied for his autism.  He has the benefit of learning under the direction and care of teachers and other professionals who know how to help him gain better control over his behaviors.  He isn't the 'weird' kid in the class, he's one of the crowd, just another kid with autism.

I don't think my son needs to "act normal."  His autism doesn't need to be "cured," it is a part of who he is, it contributes to the many qualities that make him a wonderful and unique person.  The goal of mainstreaming him is rather to help him become adept at surviving in a world where the majority of people he encounters do not share his non-neurotypical traits.  For him to have the best chance of success in the workplace, he needs to have as much time as possible learning how to read social cues, how to regulate his behavior and emotions, how to navigate change and disruption.  These are the same skills all children, normal or differently abled, need to learn in order to be successful adults, really.

I have a firm opinion that children - all people, really - benefit greatly by learning to have compassion and empathy for others.  Very often people fear what is unfamiliar, and fear and ignorance create division and hostility.  We are not so many generations removed from a society that segregated the different and the disabled to an extreme.  Fortunately many parents, educators, medical providers and opinionated and outspoken people who are differently abled have made huge strides in gaining access to education, to the workplace and to the public consciousness.

When children have the opportunity to interact regularly with other children who are differently abled, the perception of difference diminishes.  A wheelchair becomes not something strange to stare at, its just the way your friend with CP gets around.  A text-to-speech device becomes the normal way your friend with apraxia of speech talks to you.  Kids can learn early that people's behaviors are sometimes a direct result of the way their brain processes information, and that kids who have difficulty in social situations aren't just being naughty or mean, they are having a hard time managing their reactions to stimuli or unable to understand social cues.  Kids with Tourette's aren't saying things to get attention or be disruptive, their brains are sending them signals they may not be able to control.

I'm a mom.  I love my kids and I want the best for them.  I want them to be happy and healthy people who have strong, loving relationships and who do work that satisfies them emotionally.  I want them to be productive, contributing members of our society.

Segregating children with differences only serves to create adults who don't function as well in society, who are more likely to have difficulty interacting with their coworkers or the guy who sells them groceries or the lady who collects their rent.  I don't want to see my child's potential diminished to suit the attitudes of another parent who doesn't have the first clue about what it is like to walk a mile in my son's shoes.

Just as my son ought to learn how to navigate a world that doesn't function the way his brain thinks it should, so does that other parent's child need to learn to navigate a world where not all of the poeple he interacts with will be just like him. 

 

New glasses to see through.

Even though I was anticipating a spectrum diagnosis for Mr. C, having that diagnosis has made a surprising difference in my ability to cope with some of his more frustrating behaviors.  It has also opened my eyes to other behaviors to which I've been more or less oblivious.

In contrast to his sister, my son was such a pleasant and easygoing toddler that there was no indication of anything non-neurotypical.  As my daughter's behavior improved through therapy and medication, his began to worsen.   Its taken a lot of time and help to begin to see improvement for him.  I didn't understand at first that the difficulties I was experience as a result of my son's behavior were small potatoes comparied to the difficulties that HE was experiencing as a result of his autism and sensory issues.

I am embarassed to admit it, but with the psychologist's report in front of me, it finally clicked into place.  His behaviors are incredibly less of a struggle for me to cope with.  I find myself less frustrated because I am more aware of why he reacts the way he does.  I begin to understand that our expectations of him and our attempts to elicit expected behaviors from him have been unfair in that we were often approaching him more in the way one would approach a neurotypical child.  He lacked the context for the "why."  That doesn't mean he didn't try, but even when he was behaving appropriately it was more to the credit of his own ability to adapt than to our parenting.

My children have dealt with so much in their young lives.  They have overcome obstacles that I am convinced would have overwhelmed me if I had to face them. 

The mask for the nitrous and the blowing air were too difficult for him.  After we tried for an hour to get started on the procedure, the dentist and I agreed that we would reschedule and try to get the cavity filled under sedation instead.  But my son, he had been promised a particular toy if he let the dentist work on his tooth. So began the negotiations.  No, he couldn't wear the mask.  No, the dentist did not think he would be able to numb my son if he didn't have some way of relaxing him, so the fast drill was out of the question.  But my son agreed to open really wide and to hold up his hand when he needed a break, and the dentist agreed to use the really slow (and loud) drill and only drill for five seconds at a time.   With a fully negotiated agreement between them, they worked together as a team and the tooth was drilled, the cavity filled, and my son got his toy.

And this is why I know my son has more courage in his little toe than I have in my whole body.  There is no manner of persuasion on this earth that could make me sit in the dentist's chair and let him drill my tooth without any sort of novocain or pain relief.  NONE. 

I don't know if there is ever any way that we as parents get to compensate for our past sins, but if there were my biggest wish would be to get a do-over on all those times I got frustrated and out of temper with my children for behaviors they could not actually control. 

I suppose its funny that having an autism diagnosis is a relief. But it is.  Its the opposite of every negative thing you might consider it to be.  It removes the uncertainty and the questions about the puzzle that my son has presented.  It opens new opportunities for him and for all of us.  It reveals him in all of his unique beauty and mystery, lets us see him in a new way. 

Once I might have reported this experience at the dentist by complaining.  Feeling frustrated because it took so incredibly long, that we had to go through so many gyrations to get the filling done.  Now, though, the experience is transformed through the lens of autism into one of triumphant success, an opportunity to celebrate the unique way my child negotiates his world in accordance with his needs. 

My son was not difficult.  My son was BRAVE.

Badass Dentistry

Here's where I admit yet another of my many failures as a mother, try to give you some bullshit excuse and then tell you how I've oversome it and now I'm a really awesome parent.

(When I was in 4-H many years ago while dinosaurs roamed the earth, they told us always to present a topic to your audience by telling them what you're going to tell them, then tell them it in detail, then summarize what you just told them.  Personally I find that boring as hell, but a little preshadowing never hurts.)

I believe my insane fear of the dentist is well into the public domain.  When I wrote that it had been two years since I had been to the dentist, what I didn't tell you is that it had also been two years for my children as well.

I know, I suck.

Its not easy to take your kids to the dentist when your own bad experiences overlay everything that's going on.  Its not easy to take them when you remember like yesterday your toddler having to undergo general anaesthesia because she couldn't handle sedation dentistry.  Its not easy to take them when your youngest child has been so anxious and afraid he screams whenever the dentist tries to look in his mouth.  No, its not impossible.  Its just not easy.  And for two years I've been hovering over them while they brush, threatening them with descriptions of what they'll be like wearing dentures in their twenties as a consequence for poor dental hygeine.  Oh yes, I'm a wonderful mother.

This year, though, I decided, would be THE YEAR.  My daughter has mostly overcome her issues with the dentist and I was more worried about the extent of the damage from the two-year-haitus in dental care than anything else.  But I was really, really avoiding having to deal with the little man and his anxieties.  Not looking forward to it at all. 

To put teeth in my resolve, I scheduled dental appointments for everyone in the family.  SG and I both had our exams and cleanings and are still in sticker shock over the anticipated costs for the crowns we both need (gritting your teeth when you are stressed is by all evidence a very bad thing to do).  The kids' appointment hit some conflicts and had to be rescheduled twice, and each time I breathed a sigh of relief, thinking, "Oh thank GOD, I can put this off a little longer." 

I kept waiting for a good excuse to reschedule a third time, but life refused to cooperate, so I showed up at the dental office with a little bit of determination and a whole lot of apprehension.  In keeping with our reward-based behavior mods for Race Car Man, he had been promised some DS during free time if he let the dentist look at his teeth. 

Not being one to aim low, he went for the gold.

Not only did the doctor get to examine his teeth, he let the hygienist clean them and give him a flouride treatment AND he got both bite-wings and a panoramic x-ray. 

It was a raging success.

While I think the kid-friendly open seating and movie screens (with headsets) helped, the most important factor was the dentist and his staff.  He introduced himself to my children:  "Hi, my name's David.  What's yours?"  And from there it was just marvelous.  He said we would let my son set the pace and they would not do any procedure he didn't consent to.   He then spent a good five minutes just chatting with each of my kids, asking them about their interests and their schools and their friends, and he didn't ask them to open their mouths until he had really earned the right to do so.

C:  "Why are you wearing that mask?"

D:  "I want to cover my mouth.  I have to talk sometimes when I'm working on your teeth, and sometimes when I talk a little piece of spit might come flying out of my mouth.  If your mouth is open at the same time, my spit might go in your mouth and man, that's just GROSS." 

Badass.  If the man wasn't already married with about 10 children, and if I wasn't so damn much in love with SG, I would have kissed him.

The hygienists were equally as badass.

They let my son feel the rubber cap on the cleaning tool.  They let him watch other kids have their x-rays done so he would understand the process.  They gave my daughter purple sunglasses because she's sensitive to the overhead light.   When my son wanted to get up and look around the room, they allowed him complete freedom.  They had screens on the ceilings above the chairs and nice padded headsets for them to watch movies.  They answered their questions. They explained things very factually but in terms that were not frightening.  They treated them with respect.

It was clear to see that this was not their first experience with special needs, and it was equally clear that the comfort of their patients is their number one priority. 

While its still true that in my heart of hearts I'm no fan of the dentist, in this one case, I may have to make an exception. 

Dentistry for kids.  Totally BADASS.

The snow fell and I right along with it

Finally, it came.  Boy, howdy, did it come.  We got a good six inches between Tuesday night and Wednesday morning.  School was delayed, meetings were cancelled, we pretty much didn't leave the house except for putting the kids on the bus and getting them back off. 

The kids had a blast playing in the snow.  All Wednesday it was the perfect snowball snow - fluffy, just wet enough to stick together to form a ball.  Race Car man quickly got over his aversion to socks when he discovered how cold his feet got in his snow boots without them. 

We found out Wednesday night that school was cancelled for Thursday and the kids were beside themselves with the excitement of playing outside all day long.

We woke yesterday to a light freezing rain that continued all day long.  It left a two-inch layer of ice crystals on top of our snow and coated every tree, fence, mailbox and vehicle in a sheet of ice. 

I did leave the house, though.  Had to.  We we were out of dog food and milk, two things that in this household are required to keep the earth revolving around the sun.  And then, I had the followup appointment for Race Car Man's evaluation.  He had to retake one test series, and then we met with the psychologist.

I answered a lot of questions.  My son answered some questions.  The doctor was kind, measured, and very patient.  As he interviewed me, he completed an evaluation.  We clarified some questions.    He will compile his report and send it to us, probably in a week.  But of course, as a parent, you want to know the answers to your questions, even if you think you know what they are. And so I asked him.  And he very kindly and gently shared the results of the evalution form he had just completed with me.

I've had to learn some new phrases about myself over the last couple of months - some easier, some harder.  I've had to learn how to say "I am a wife" after a few years of wanting to be anything but. 

I had to learn how to say "My brother is dead" and saying it still causes a surge of anxiety and pain that feels like its going to break my sternum in half.

And as of yesterday, I have one more to add.

"My son has autism."

 

 

 

 

Seeing beyond the label

Tomorrow the race car man has a very long evaluation to do. 

When his teacher wrote us to say that he was not showing any behavioral advances in school and that she felt something was missing from his diagnostic picture and definitely his medication toolbox, I stopped procrastinating and got on the phone with the insurance company.

The child psychiatrist who also manages Amazon Girl’s medication spent a half day with us, and we walked away from that appointment with a prescription for an anti-anxiety medication.  In just days we saw major improvements both in his ability to be more compliant at school and in the frequency and severity of his sensory meltdowns.   

This second evaluation will give me a much clearer picture of where we will need to approach behavioral therapy from.

I tell my kids frequently that I’m the luckiest mom in the world, and I believe that with all my heart.  There are times that their behaviors are irritating, when its easy to lose sight of the essential truth, that they are each unique and perfect in their own way.   While I like to think they embody the best traits of both their father and I, its probably more accurate to say that in two separate instances, our mutual DNA combined to bring something entirely new and special to life. 

Its easy when you have lots of doctors and diagnoses to get lost in the land of labels.  We need to have names and labels for our disorders, for our behaviors, yes.  But my child is much more than his labels.  His labels do not define for you at all the nature of who he is and what gifts he possesses within him.  My daughter’s labels do not come close to describing her enormous love for others, her creativity, her joy. 

Too many people look just at the labels.  Or they look at the behaviors the labels describe, and they make judgements without expanding their knowledge of the actual person wearing the label.    There was a strong reaction in the special needs community recently to some  negative reviews of the film Extremely Loud and Incredibly Close, a story about a nine-year old boy whose father perishes in the 9/11 collapse of the World Trade Center.  Although the book on which the film is based and the film itself never specifically say so, the character displays many behavioral traits that indicate a spectrum disorder – odd speech patterns and tone, difficulty with social interactions, extreme sensory reactions. 

The review that received the most negative response was from David Germain, movie writer for the Associated Press.  His review appeared December 19 at SFGate.com, the online home of the San Francisco Chronicle.  You can read the full article here, but the salient points are the following direct quotes:

”Newcomer Thomas Horn…is a mixed bag, holding his own among the adult actors, but, through no fault of his own, forced to behave with excessive shrillness much of the time.

That’s because his character, Oskar Schell, may or may not have Asperger’s syndrome, a mild form of autism (his medical tests, we’re told, were inconclusive).  You make allowances in life for people you encounter with autism, but spending two hours with a fictional character possessing autistic qualities can be grating.”

And those are the kind of people I dread my kids encountering.  The people who can handle special needs for a few minutes, but lack the compassion or the inclination to “see through” behaviors to the kid inside.  The kind of people who can’t spare five minutes to try and comprehend that a person is more than the rhythm of speech they employ or the pitch and tone of their voice.  

How much of a self-absorbed narcissist do you have to be to find the struggle of a child who has just lost his parent irritating because he doesn’t happen to sound right when he’s speaking?  How little humanity do you have to have left in you to NOT find this kind of story compelling?

Does it take some patience to look past my children’s behaviors?  Often, yes.  But you know what?  It takes patience to be a human being.  Whether you are dealing with people who are differently abled, who have mental health or neurological disorders, who are ill with a terminal or debilitating disease, you ought to be able to have a little patience.  You have to have a little patience to drive through a toll booth or wait in a line at the grocery store.  You need a little patience to cope with an aging parent who isn’t at his best now, but who is still a person you love deeply.  You need patience to try and go anywhere with an absent-minded spouse who can’t find her keys, her coffee cup, her cell phone.  You need patience to make it through a work day with people who are crabby or uncooperative, who didn’t do the things that you asked them to or who made a mistake that cost you time and money.

So even if we end up with another label tomorrow, it won’t change who my son is.  It won’t change the love and respect I have for him.  It won’t change anything but the ways in which we try to help him succeed.  Lets have a little patience for my boy.  Let’s look past his labels to his bright mind and unquenchable spirit.  Lets do that for every child, neurotypical or not, able-bodied or not.  Do it for me.  Do it for you.  For all of us, lest we lose our humanity.

Today's post brought to you by the wonders of cold medicine

I shudder to think of what I'd feel like right now without the bubbly goodness of Alka Seltzer Plus cold medicing roiling through my tired veins.  Even on the sauce, my nose is running, I"m sneezing like someone's sick idea of a cartoon joke and every time I blow my nose, the goop in my left nostril tries to exit via my eyelid.

I managed to make it to work, though.  I'm sure my coworkers appreciate the plague I'm spreading via every doorknob.

Image courtesy of  US National Library of Medicine

Once when I was in high school I had a sinus infection that spread into my eyes.  It wasn't pinkeye, it was a sinus infection, and every time I would blink my right eye, a think film of yellowish-green goo would spread itself over my eyelid, almost completely obscuring my vision.  So attractive.

In a way, I'm grateful for the fuzzy wooziness of my brain right now.  It provides an insulating blanket between me and life. 

I just managed to get a new evaluation appointment set up for my little guy with a psychiatrist in a couple of weeks.   That's unheard of around here, this doctor and most of the others have a 3 month wait for new patients, but we managed to call right after somebody cancelled so we got lucky.  Lucky is a rather dubious term, but lucky it is, to get in before the end of year while our deductibles are all met, lucky to see the doctor who already knows him because he treats my daughter too, lucky to have a teacher who communicates so well on what she sees in the classroom so that there's no disconnect between what we think is going on and what is actually happening during the school day.  He's still struggling.  He's in the right place, no doubt, but still struggling.  And the teacher is kind of surprised that he doesn't have a certain diagnosis, because behaviorally he is so similar to the other kids in her class that have that particular issue.   I had ruled it out before because there were a couple of symptoms that didn't seem to be a match, but looking at it more than a year later with kindergarten behind us and current behaviors in our face, I'm shocked it didn't stand out for me before now. 

I don't want to put it out here yet, because with kids a lot of issues that might seem like one thing can actually be something else.  So I'm going to try to just be patient and open-minded and see what the eval results tell us, then we go forward from there. 

All I really care about, ultimately, is that we know enough to provide him the right kind of  support.  It doesn't matter whether he has diagnosis A, B or C -- it is what it is, all that changes is how we help him cope.

I spent the obligatory hour on the phone with three different people at the insurance company yesterday, only to end up with a referral to a psychiatrist who, as it turns out, doesn't actually do pediatrics.  But that landed us with the resident psych at the center who does, and we already know him, so that should be good, right?    Still, its frustrating.  We're also being assigned to a dedicated team by the insurance company who are supposed to provide me with as many local resources as they can find for me within a week. 

Fortunately, my wine rack is well stocked right now, its a Friday night,  and the kids are at their dad's for a few days.  I have some time for a pity-party before I need to lift my chin up and buckle my seat belt.  Of course, with the cold medicine I'm not really sure I'll need the wine, and with a clogged schnozz I probably wouldn't enjoy it anway. 

 

 

This smile

Last year it was not uncommon for me to answer my cell phone in the middle of meetings or to pick up my deskphone even when I was eyeballs-deep in the middle of monthend accruals.  Last year was so hard, those first months of school, when it seemed like at least every other day I had to get back in my car, abandon whatever I was in the middle of, and go rescue my son - who could not cope with school. 

The nurse at his school was his safe person.  If his teacher absolutely could not deal with him or he was having too hard a time, they would take him to the nurse's office and she would talk to him if she could, soothe him as much as possible, and if she thought he needed to hear mom's loving voice or needed to go home, she would call me.  She was such a big help to me last year, and she was so dedicated to my son.  She really made a big difference to us, and when he moved schools this year she was one of the people I felt a twinge of regret about, because she really does care for him and I hated that he was losing that connection.

Yesterday I was in the middle of a meeting with one of the floor supervisors at work, problem solving and information-gathering, and my cell phone rang.  For the first time in a long time - possibly the first time this school year - I answered my cell phone because it was from the school district number. 

It was our nurse from last year.

She was at my kids' new school substituting for that school's nurse and she had gotten to see my son.  The reason she was calling was...

...to absolutely rave about how mature and calm and happy he was and how delighted she was to get to talk to him. 

I am flooded with emotion.

Gratitude for teachers and staff who genuinely love my children and care about their interests and needs. 

Fierce pride in my son.

Love. Joy. Hope. Anticipation.

Its one of those moments that more than makes up for the times when we struggle, when things go wrong, when its hard to just take any more steps forward.  This is the kind of moment that recharges the batteries and makes everything seem possible.

The smile on my face will last for days.

 

Earplugs. Or something.

Honestly, I don't know why we don't see more stories in the newspaper about parents with oppositional children driving their cars straight into brick walls or off of the sides of overpasses.   And I confess to having a burning curiosity as to how so many oppositional children manage to survive to adulthood.  And even as I write this I have to kind of laugh, because after this long, my coping skills have developed to levels I never imagined were possible.

My son, God bless him, is simultaneously one of the most charming and one of the most maddening people I know.  He has been at his new school for just over a month now.  He knows the name of everyone in the school.  I pick him up and no matter which crossing guard is waving us across the pavement to safety, he knows her name.  He smiles at her, waves at her, enthusiastically shouting, "Hi Mrs. So-and-So!"  And they all smile right back at him.  "Hi Mr. Race Car Man!"  They love him.  And he IS lovable.  So charming.  About two days after his birthday party he came up to me in the kitchen and wrapped his arms around me. 

 "Mommy, when is your birthday?" 

"Just after Christmas.  Why?"

"Because you made such a special birthday for me. I want to make you the bestest car in the world for your birthday."

Melting.  I'm melting.  He is so adorable when he does this.

He remembers people's names, he remembers the smallest details about everything.  His brain is fascinating to me, and I know I've only scratched the surface of what he's capable of understanding and doing.  As a kindergartner, he rarely participated in learning activities in his classroom.  He was mostly curled up in a ball on the floor, not coping.  Yet he passed the end of year testing with perfect scores.  Of course, they only test them to their grade level, so that's not so amazing.  What was amazing was that his aftercare provider, on days when he'd been naughty, made him sit in her office and do math and reading books during recess.  "Just for fun" (or so she says), she gave him the first and second grade math tests.  He scored perfectly on first grade math and about 80% on second grade math.  As a kindergartner with little to no math instruction whatsoever.   I tell people that this is the child who will eventually be building nuclear bombs in the basement if his abilities are not channeled very carefully.   SG wanted to get him a chemistry set for his birthday.  My response was "Please, no, I like my house without the burn marks on the walls and carpet."

 And then there are the days (or the segments of a day) when things just get borked. 

Now that my daughter is doing "real" homework, I've become weary of being her walking thesaurus.  We went to the bookstore yesterday afternoon and she is now the proud owner of a thesaurus, a dictionary, and a children's encyclopedia.  I showed her how to look up words in the index of the thesaurus to find what pages to look on, and she was off and running.  But bookstores - places I used to love, places I used to be able to hang out in for hours - are my nemesis anymore.  If only they would just carry BOOKS.  But no, they've got toys now, almost as many toys as they have books, it seems.  Brilliant marketing tool, people.  Oh, and BITE ME.   While I searched for materials for his sister, the little man played at the train table in the kids section and then with the muppet puppets in the puppet theatre (it sells for just $89.99, folks, and if you buy it they throw in a free puppet.  Neato Frito. )  But when it was time to check out, he was standing there holding a box of train pieces. 

"Mommy, can I have this?"

"Not today buddy.  We're not here to pick out toys."

And let the screaming begin.

Would it hurt to buy my kids a toy sometimes?  Maybe not.  But unfortunately we did that a few years ago and somehow it took hold in their minds that they should get a new toy everytime they go to the store.

"But I was GOOD!"  he shouts at me.

"Yes, you were good.  That doesn't mean I'm buying you a toy."

I finish paying, I ask the kids to get in the car.

"NO!!!! I want this train!!!"

I'm not going to let him stand there disrupting anyone else's day one second longer than I have to.

"OK, here's the deal.  You have to three to put the box down and walk to the car.  If you don't, if I have to take the box from you and carry you to the car, you will lose the chance to watch television after homework.  No Mighty Machines."

"NO!!!!!"  he screams.

I count.  He does not comply. 

I very calmly take the box from him, calmly pick up his taut, struggling body, and carry him to the car, put him in his booster, buckle him in.  He is screaming at the top of his lungs.

I get in the car, put on my seatbelt, turn on the CD player.  "Daydreamer" by Adele.  Though I can barely hear the song through his shrieking, I focus very intently on the words so that I will think about something other than his piercing yells.

He kicks my seat and screams almost all the way home.  I manage not to drive off the overpass, slam into a concrete divider or drive us off a cliff.  I manage not to scream back at him.  But finally I cannot take anymore of the screaming.  I don't want to engage and I don't want to be upset, I am working so very hard at maintaining my composure.

"Buddy, you need to stop the screaming.  If you can't stop screaming you're going to have to stay in your room when we get home."

He yells at me for a few minutes more, but then finally his shrieks turn to quiet sobs.  Eventually he stops.  He picks up the encyclopedia I bought for his sister and starts to read it.

Some might classify this as a colossal failure.  I think it was a screaming success. 

Sorry for the pun.  I couldn't help myself.

My son lost his cool, but I didn't lose mine.  Where in the past he might have screamed for an hour or longer, he screamed for about twenty minutes.  See, in special-needs-land, we measure success incrementally. 

Even so, there are still times when driving off the overpass seems like a reasonable alternative.