Barnmaven

Counting on it

About a month ago I took my horse to a schooling show.  We've had a lot of fun doing various things all this year, and I was excited about the progress we've made.  I was sure that we would have a great outing.  

I might not have minded so much about the serious show people that showed up (at the end of the year?  For a schooling show?  After you've clearly cleaned up on the real show circuit?) if it weren't for the fact that my own horse and I had a really rotten day.  I'd brought his two stable mates and on top of that his half-sister and one of his trail riding buddies were there.  He couldn't stop worrying about where all of his friends were for more than two seconds, and if he couldn't see any of them he'd get panicky.  He was prancing and trying to take off, wouldn't stand still, wouldn't stop calling to them.  In the ring he kept trying to angle himself toward the exit.  All in all the day was horribly frustrating and disappointing.  The judge hated us, but that's OK because I wasn't super fond of us, either.

I try not to care about competing.  At this stage in my life if we are doing something that actually awards places, I'm pretty happy either way, so long as I'm happy with myself and my horse.  But for days after that schooling show I felt so small and incompetent.  My thoughts kept spiraling downward.

Maybe I really don't know what I'm doing.

Maybe I'm doing everything wrong.

Maybe I should just quit trying to do anything except trail riding.

Maybe I'm just an idiot.

I had a couple of really good rides at home in the weeks after that, and a fairly good lesson.  Then this weekend we did a half-day western dressage clinic and a dressage schooling show.  I entered the Introductory test for the senior age group and the open group, along with a few friends of mine that also take lessons with me.  

We placed well, but more importantly Bugs and I had a really good day together.  He wasn't perfect, but he was better than he has been and we didn't break our patterns or have a bucking fit across the arena.  I really enjoyed the whole day, and being around my friends and watching everyone ride. 

I liked the format of the show.  It was my first dressage experience, so it was new to me.   In dressage each rider goes individually the judge gives scores on each element of your ride. There are a LOT of elements, and even if you mess up on one of them, your whole ride isn't a wash.  Not only does the judge give you a score, but you also get comments as to why it was a better or lower score.  Those comments not only let me know what we need to work on but also helped me to feel some confidence about the things we are doing right and the direction we're moving.

Last night as I was reflecting on how much better I felt after having a positive show experience, I recalled what I often say to others and what has been a powerful message for me at other times of my life:  

Everything changes.

No matter how well or how badly things are going, you can count on things changing.

Race Car Man is struggling so badly in school right now.  We've had a meeting almost every two weeks all year long, but things are not moving in the right direction.  The strategies that have been implemented that are supposed to help him are not helping him; they are escalating the situation.  His teacher is frustrated, his dad and I are frustrated, but most importantly, my son is frustrated.  His therapist was able to get him to discuss how he was feeling through some indirect questions, and he expressed to her quite clearly that he feels like he is a "bad kid" who makes "bad choices."  

I can't adequately explain how devastating that was for me to hear.  The tears flowed.

This year has been so difficult.  We had asked for an aide for him full-time, and we got one, but the first one didn't last and the second one is still new and in the words of the district "needs training."  In other words, not qualified.

The district psychologist has observed him once.  I've been pushing for the district to engage the therapist he sees, who is the director of our local autism resource center, to do some classroom observation and feedback for the teacher, and they've resisted.  They spent four weeks observing him, had an aide assigned and we had one conference call with the psychologist who still, despite saying he would, hasn't contacted our therapist to discuss the situation.  Two months into the school year and things are worse than they were the week he started.  My son is not accessing any learning, and we've had to pick him up more than five times in the last four weeks.

Last Thursday he was suspended for two days after a morning in which his behavior escalated almost from the time he arrived at school.

I feel like his disability is not being taken into account when he begins to react to his choices.  If he isn't making good choices, maybe none of the choices he's being offered are incentive enough for him.  If his behavior keeps escalating, clearly the strategies they are using to try and calm him down are having the opposite effect.  Rather than expecting my son to change, I want the school to change their approach.  I don't blame his teacher.  She hasn't had another student like him.  She's been begging for help for quite some time, stating clearly that she has exhausted all the tools she knows and needs help with some new ideas.  Its not that she's not open to changing things -- she doesn't know what to change to.

I was feeling really hopeless on Thursday.  And in truth, I'm not sure I'm not feeling a little bit that way today.  But on Friday I talked to our therapist and she got me in touch with a local volunteer advocacy group, and she was able to give me some bullet points to request from the district, and she provided some potential options for us that I haven't looked into before.  I was able to request a meeting with the district special services director and the advocacy volunteer is attending along with my ex and I. 

This morning we met with the school administrators and his teacher so that he could come back from his suspension, and I feel like we got a great deal of support and agreement from his teacher, the principal and the school psychologist on the things that we want to see happen from the district.  

I needed a reminder that even though things feel hopeless and difficult, they won't always be that way.  Nothing stays the same.

I got one.

I can only hope that the direction will be UP.

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Maybe one day is all we're gonna get

Two voices, one direction

Race Car Man didn't make it an hour at school today when we got the call he needed to be picked up.

I've gotten a lot better about not feeling completely and panicked when this happens, but even though I'm much more composed, I'm still disheartened and frustrated.  Three times since our meeting now he has had to be picked up from school, and other days the only reason he's managed to make a whole day at school was because his dad was in the classroom helping.  

This morning it was that he forgot to bring his MP3 player, which  he uses on the bus as a tool to help him not worry about other students and whatever they might be doing.  

I'm just not sure what the right placement is for my son.  His school seems completely  unequipped to deal with him, but the only other option within our district is a class for students with behavioral issues.  Yes, he has behavioral issues, but he also has autism and from talking to teachers and our therapist, who is aware of the classroom, we really believe it would be an even bigger detriment to him to place him there.  Which leaves us exactly where we've been since he started Kindergarten:  We have a smart student with a lot of issues who is unsuccessful in a classroom situation without a lot of individual support.  We have a school district who thus far isn't offering the kind of support we all (including his teacher and the administrators at his school) believe he needs in order to stay at that school and access learning in his current classroom.  

I have two inner voices.  One is all doom and gloom and whispers to me of terrible outcomes, of a child becoming an adult who is completely unprepared for the outside world. Who is still living in my basement and dependent on me and not living a fulfilling life with a job he loves and friends of his own and maybe even a wife and kids.  That he will never blossom or grow or get the chance to show the world how amazing he really is because I've failed thus far at figuring out how his puzzle pieces fit together. 

The other voice tells me that everything is going to be fine, we will solve this and we will get there.  I just don't know today, at this moment, how exactly that is going to happen.  And I have to be OK with that because there's nothing I can do at this moment to alter the situation.  I have made my call to the Director of Special Services.  I have spoken to (argued with) my husband.  I've spoken with my son's father.   We have a therapy appointment already lined up.  We are doing what we can and I have to put a brake on myself not to start getting ramped up and upset and making a thousand useless phone calls that won't do a damn thing to change the fact that probably there is no miracle solution to all of this.  That the long term change will happen if we just keep plugging away at it, working on the solution to the puzzle that is Race Car Man.  That answers will come to us that we haven't thought of yet. That ultimately, I can't even worry about the future because the only day that counts is today, and even if today didn't start off well I can still change it.

If I have to choose only one voice to hear, then by all means, let it be the one that points to a better place.

When I let myself live in the present I find that even though things might not be going well right now, my circumstances WILL change and I have the power to influence which way they go.

 

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This week should end and quickly

The one where I'm supposed to have the answers

Life is an endlessly-evolving narrative, one with twists and turns and moments of suspense.   Sometimes I think my son's  life purpose is to make sure the twists and the suspenseful moments are the norm rather than the exception.

We had a fun incident with his transportation a few weeks ago, and by fun I mean the kind where you want to bang your forehead on your desk repeatedly.  The kind of fun that makes you wonder if there is a school administrator anywhere who actually knows what their legal requirements are when an IEP is in place.  The kind of fun any parent of a special needs child gets to experience on a regular basis.  Which is why most of us lean toward rampant alcoholism.

There are important factors to note in regards to public school transportation services and special needs children.  If a child's behavior is an adjunct of that child's disability and that behavior does not constitute a danger to the child or to others, the school is required to provide the service.   However, on the day that my son decided to make a big noisy stink because he thought maybe doing so would bring his mother home faster, the school prinicipal decided to remove him from his bus despite the fact that neither his driver nor the aide on the bus thought that his behavior was a danger. The school called me to come get him.  Immediately.  Except I am at work, which they fully well know is an hour's drive away.  SG is at work as well, a 45 minute drive.  My mother was on that day the closest adult who could get him and she would need a half hour to get to the school to collect him.  The principal insisted he be picked up immediately.

What am I supposed to do?

"What would you like me to do?" I ask, a shrill tone creeping into my voice.  

"Well,  if I had a child with your son's behavioral issues I would have a better backup plan," she informs me.

After I curtly advised her that my mother would arrive as soon as possible, I hung up the phone and started picking chunks of my brain off the walls and floor of my office.  

I've since spoken with the district assistant superintendent twice, the director of transportation twice, and this morning we had a followup IEP meeting.  At various points throughout these conversations I have raised my voice at least four times and managed to limit my use of the phrase "call my fucking lawyer" to just once, though I'd be prouder of myself if I hadn't said that at all.

I just hate this shit.  I hate the feelings of helpless anger and shame when I have to deal with the district's inability to understand either my son as an individual or their own legal responsibilities in regards to his educational services.  I hate feeling judged by someone who doesn't have a son like mine, who has never a day in her life had to try to have three or four different backup plans in case things spiral south for her child.  I hate feeling like I have to defend our family and the fact that we do have backup plans - about four or five of them - but that sometimes circumstances dictate that none of them are workable at the moment.  I hate losing my temper and my composure when I'm talking to people to whom my child's well-being isn't as high a priority as I think it ought to be.  And as silly as it may sound, I hate the thought that people somehow think my son's autism is some kind of failure on the part of this family.

I hate that they don't get him.  That it seems to me they see only his behavior and his diagnoses and not the person.  That they don't see his sense of humor -- or when they do notice it, all they can do is say "but he's so morbid" and act horrified.

I want the best for my son, but I often feel I don't know how to provide that or even to find out exactly what it might entail.  I envision a future where instead of the world insisting that my son find a way to conform himself to the needs of the system, the system find a way to understand what my son wants and needs and the best way to help him be his own best person.  

His teachers and his support team at school don't have an easy job, I realize that.  I don't expect saints and martyrs.  And for the most part I believe that his teacher and the people who are supposed to be helping him really do care about his best interests.   I just wish it were easier for us to know what those best interests are.

 

 

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Its supposed to go better than this

We were already set up for a followup IEP meeting yesterday for Race Car Man.  As it turned out, even if there hadn't been one on the calendar we would have had it anway.  Tuesday...

...He had a good morning.  He was medication-compliant.  He got dressed when he was asked.  He rode the bus, stayed in his seat, kept his hands and his voice to himself, and earned a reward:  iPad time when he got to class.

Except when 10 minutes of iPad time was up, he was not ready to be done.  He melted down, all the way to the core.  It was bad, not only bad enough that he had to be picked up but also bad enough that he said some things he really should not have and got himself suspended for a day.  In the wake of events across the country, everyone is on edge and things they might have shrugged off last week aren't getting a free pass this week.

Later that afternoon, the new dog, who had been doing wonderfully well, was unpardonably aggressive.  We are responsible dog owners.  We knew what had to be done.  We checked out some alternatives but none of them were workable.

Tuesday night was kind of a blur of sadness, frustration and fear.  Its Christmas, dammit.  This is not how I hope for the holidays to commence -- with another tough IEP meeting where I get the distinct impression my son's teacher wants him in a different placement, followed by a tough decision about the fate of a much-loved pet who cannot be rehomed and who is a danger to people.

Fortunately at our IEP meeting, I had support from the district counselor whose opinion and mine were the same:  A change in placement doesn't solve the problems.  The problems will still exist and we can't ignore the danger of disrupting a child who is already struggling.  If the accepted model of behavioral therapy is applied, we see that we are trying interventions that aren't working.  Either we are mis-reading the antecedent behavior or the responses we are implementing are not working and we need to figure out new approaches.

We ended the meeting with some plans in place -- my ex will be spending time in Race Car Man's classroom on his weekday off.  The district counselor will work with the teacher, the aides, the school counselor and school psychologist to implement some different positive interventions.  We have an appointment with a new behavioral therapist and a plan to access some skills classes for both my son and for us as parents.  Clearly we all need some more tools for our toolboxes, and although the timing is unfortunate, we've got to move forward with intention and resolve.

I left that meeting to attend another work-related meeting that lasted the rest of the day.  I welcomed the chance to concentrate and engage with a cross-functional team of adults on everything BUT autism and dog problems. 

When I got home last night I spent some time engaging Race Car Man about what happened on Tuesday.  I'm always struck by how honest he is.  He admits his behaviors.  He doesn't try to deny what happened, but tells me he can't control himself when he gets that upset.  And he's right, he can't.  He doesn't have those skills yet.  So we talk about what are things it is OK to say when we are mad and things that will get you in big trouble, and I know we will have to spend some time helping him to practice using different words when he is angry and upset so that the next time it happens he has more tools to reach for. 

I suppose I should be feeling worse than I am, but despite the heavy baggage of the last couple of days, I have a sense of relief.  We have a plan and we have a good team to help my son.  I know that a lot of his issues are temporary -- he will either grow out of these behaviors or he will receive enough therapy to help him improve them.  Naturally, these problems will simply be replaced by other problems, but that's true for every person who ever lived, autism be damned.  I am terribly sad about our dog, but its spilled milk;  I can't undo what happened and I can't take chances with my family or with other people's families.  I salve the wound by offering to foster again after the grandpuppy goes home with her dad, who is spending Christmas with the Washington State family next week.  We are all very excited about seeing him.

And finally, with all that has happened the last few weeks, we've gotten a break in an area where we really needed one:  SG interviewed for and has been offered a job HERE.  ALL THE TIME HERE.  Knowing that I will not be dealing with the upcoming months of February and March without my husband at my side makes a lot of things a lot more bearable.  Its not that his presence solves all the problems, no one can do that.  But his presence means I have someone here who's got my back, who loves my kids, who fills an empty space in my house I didn't even know was there until I met him.  

Happiness tempered by sadness tempered by excitement tempered by fear.  That's life.  That's OK.

It was bad but its getting better

Since my optimistic post about med changes for Race Car Man a lot of things have happened.  Things I couldn't write about while they were happening not because they needed to be private but because I was too mental to be able to talk about them.  All is better now, but I needed a few days of perspective in order to move beyond being completely inchoate and albe to construct full sentences.

Race Car Man had to be escorted home on the bus for a seoncd time,  had to be picked up before the end of the day twice, got suspended for a day and had to have his meds tweaked.  We had one emergency IEP meeting and one bitch-autism-mom discussion with the school district's transportation office. (Parents, know your rights and what's in your IEP.  Bus drivers are NOT allowed to independently suspend services specified in the plan.)

Probably the worst day was the day the kids missed the bus because it was early, the bus driver told SG when he dropped them off at school that she wouldn't transport my kid, then the school called me to tell me he had to go home and couldn't come back without a full IEP team meeting and behavioral plan, and when I called SG to go get him kind of lost my temper when I found out somebody (not mentioning any names but it wasn't me) forgot to give him his meds and then we kind of had some ugly words and by the time I got off the phone with him I was on the phone to my EAP for a behavior therapist referral AND a marriage therapist referral.  The following day of the new dosages, my ex gave all but one medication in the morning and asked me when I was dropping off the meds at school to give it to him then.  Except a change in routine was too much for Race Car Man with everything else that was going on, and I had words with his teacher when she insisted I continue standing there and trying to get him to take the medicine even though I'd been trying for a half an hour and I could tell that we weren't going to be successful and he was starting to get really upset which was not the best way to start his day.  Not to mention I was already two hours late for work.

Not a good week.  No. 

By Friday, though, he managed to make it through a full day successfully and ride the bus home and get all his rewards.  That was followed by a decent weekend for all of us.  SG and I made up, the kids mostly didn't kill one another and we even made it to church AND over to my parents for an afternoon to make Gingerbread houses. 

This week he has done pretty well -- not spectacular, but pretty well.  Work was insanely busy with our annual inventory and so many meetings that I haven't had time to be worried about waiting for the other shoe to drop.  I guaran-damn-tee you that by next Tuesday I'll be all settled in, convinced that this time we've hit the right combination for sure and Mr. Race Car Man will never have another bad day at school ever.  Except of course at some point, he will and once again I will tumble down the slope into a pit of abject despair.

I am astounded by how often I am caught flat-footed when life throws a monkey wrench into the engine that I feel I have finally gotten to run smoothly.  Its a constant thing, why does it always seem to upend me so?  I should be used to it by now. 

Tonight is the company Christmas party, and SG and I are going to go eat some good food, drink some great wine, dance our asses off and enjoy adult conversation with our friends.    I will gratefully put the past two weeks behind me for a few hours and I can predict with modest assurance that tomorrow's breakfast will require at least two mimosas before my head feels right again.

 

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This dance

I was going to post about our awesome new dog Little Sister, the one I sweet-talked my husband into letting me adopt while he was on the road.  She's a Mastiff/Dogue de Bordeaux mix, so fairly big.  Instead, though, I am writing about a meeting I had this morning with  my son's teacher and principal. 

While we've had a lot of very good days since the medication change, the teacher has also seen an amplification of sensory behavior.  The day they used clay in art, he spent the rest of the afternoon obsessively washing his hands because he could still feel the clay.  His shirts bother him, his socks bother him.  Even though his focus improved, his anxiety worsened.  And then yesterday, oh yesterday.  Yesterday prompted today's meet and greet.

My son has three loves:  Video games, computer time and Kindle time.  Everything else in life is something that interferes with that time.  He hasn't yet been able to understand that notgoing to school isn't going to magically increase the amount of time he gets to engage in his digital universe.  He resists doing schoolwork of any kind either at school or at home.  Once he is finally convinced to do the work, he finishes it in mere seconds.  If he brings home a book to read that he has already read once at school he simply recites it to you without even opening it.  (They really need to challenge him more)  He loses more play time by resisting than he gains, but he's not yet gained the ability to recognize the cost of this tradeoff. 

Yesterday afternoon he had earned all but the last two letters he needed in order to get his evening dose of post-homework electronic joy.  However, he was asked to complete some tasks that he refused at school.  Sensing he would not earn enough letters to be able to play Skylanders Cloud Patrol on my Kindle Fire, he attempted to rip pages out of his binder, which is his daily communication between home and school.  Then he tried hiding it so his teacher wouldn't be able to find it.  When it was time to go home, he cooperated to go in line, but once on his bus he refused to sit down.  His teacher ended up having to ride the bus with him in order to keep him in his seat. (I'm not sure why the aide on the bus wasn't willing or able to do this, but I'm grateful that his teacher cared enough to keep him safe.)

Needless to say, we all sat down this morning to review what the school is doing and how we can best support Race Car Man. 

We're adding a couple of options to his daily sheet of letters earned.  This way if he ends the day without having gotten all of them, he will have a chance when he gets home to earn one or two more at most.  Doing his homework without fighting is one option, eating his dinner and putting his dirty dishes away is another.  This way he still has the opportunity to turn his behavior around, and doesn't send him home without any hope of playing his beloved games.  Even though he can eventually calm down enough to just play with his toys, it takes a while to get him past the attitude that life no longer has meaning.

We'll also talk to his doc about med changes next week, and we're going to work together to come up with a reasonable reward system for cooperation in completing tasks at school and homework at home. 

I write all this with optimism, assuming that we will see a change for the positive in his behavior. 

It is such an intricate dance, trying to anticipate the way I ought to move to meet his needs.  One miscalculation and I've mashed his poor feet without meaning to.   There is no formula for the perfect mix of what keeps Race Car Man's engine humming.  We just have to measure things and try them and change them again if they don't work.  The pattern of this dance just keeps evolving and changing, and I must do so as well so that we don't lose step with one another.

I don't even know where to start

I've been sick since a week ago Saturday and there seems to be no end in sight.  I don't know if its a cold or flu virus or just allergies working overtime and making my lungs and throat all nasty.  I think I have to go to the doctor if it continues much longer.  In the meantime, I've got a voice that's a combination between Brenda Vaccaro and a three-pack-a-day smoker.

Nothing terribly remarkable happened through most of last week, but then we got to Thursday and it got all lively around here.

The fun began when my adorable, darling son got a two day suspension from school for hitting someone.

Race Car man is the wunderkind of deciding what he wants to have happen and then doing whatever is necessary to achieve his goals.  He had a substitute teacher on Thursday, and although this sub has had reasonable success with him in the past, he decided he'd rather be at Grandma's playing with toys.  He started acting out in class, and whenever he was redirected he just upped the ante, to the point he had to be removed from the classroom.  After ending up in the office hecontinued to escalate.  The school is well aware that his preferred consequence is to get to go home from school, so we work together on keeping that as the DFL* option. When he realized he wasn't achieving his goal, he got physical.  Not only did he hit an adult, he stomped on her foot for good measure. 

Wish granted.  Off to Grandma's you go, son, do not pass GO and do not collect your two hundred bucks.

Its not exactly fun being the parent of the kid who's bullying and hitting others. 

I make a point of apologizing and I make sure I let the school know that I support their efforts to maintain order and discipline and to keep students and teachers safe.  I communicate to them the consequences I will be applying so that they know the behavior will be addressed.  I find that its important to reassure teachers and administrators that this child has active and involved parents and that this isn't a problem they are flying solo in dealing with.

And then I knuckle down and institute consequences for my kid.  Which means NO Skylanders, NO computer, NO TV.    He has to earn them back by making good choices with his behavior at home and at school. 

His mind doesn't yet process human interactions in a way that helps him understand that hitting is wrong.  He can grasp that its something we don't want him to do, but in his brain its only because we want to prevent him from getting his way.

It has been hard to watch his hysterical sobbing over losing his Skylanders.  But I need him to learn this lesson.  He can't be a successful adult if he just hauls off and clocks people who piss him off at work.  I want him to know that we all feel like doing that at times, but that just because we are frustrated doesn't mean we can hurt others. 

So Thursday was a definite low, with my Rocky wannabe and the associated not-fun of imposing consequences.  I tell you, though, sometimes its like the universe wants to make it up to you when things suck, because Saturday and Sunday were amazeballs.

Michelle and I went to a clinic with a new trainer we had heard about, and holy crap, you guys, what a great day it was.  I've found as I get older that I don't have as much confidence on my horse as when I was young.  I'm less inclined to push him hard and I'm far more cognizant of not wanting to get hurt.  If you want to improve at anything, though, you need to push past your comfort zone.  The right trainer is the one who wants to see you and your horse succeed, who can judge your skill level accurately and assess your deficiencies, then find ways to teach you what you need to know and ways to get you to do the things you're capable of but scared to try.  Tim is all of that and more, and it was such a blast to learn from him.  Totally worth the money and he probably should be charging more.  I will be going back to learn more as soon as possible.

Sunday, though, was the best day EVER.  Why, you ask?

MY HUSBAND CAME HOME.

If you hate the mushy junk, TURN YOUR EYES AWAY.  My house is full of the mushy junk.  The hugging, the hand holding, the smooching, the can't-get-enough-of-you, you smell just like I remembered and I thought I'd die missing the feel of your hand on the small of my back just like you're doing right now.  

The dogs are happy, the kids are happy, and I am over the moon.

He's home.

 

 

*dead fucking last

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.