Barnmaven

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.

 

Encouraging

As I mentioned in yesterday's post, today was the first day of school for my kids.  My suddenly so-tall daughter gaily climbed on a bus that miraculously arrived exactly when we were told it would and lumbered off the fourth grade.

My son was in love with the thought of riding his bus to his new school and his special classroom.  When the bus actually arrived, he wasn't sure he wanted to get on it, but the driver and her assistant are old hands when it comes to these kinds of issues, and off he went.  I drove to the school with afternoon medication and a release form and met his teacher and his bus.  As it turns out, all the children on his bus are in his class.  All four of them. There are a couple of other students that arrived on a different bus, and so far as I can tell there aren't more than 10 students in his class. 

He clung to me so tightly those first minutes.  His teacher impressed me right away with her empathy and understanding of her students.  The aide asked if they should let the kids go to the playground with the rest of the students until the bell rang.  She quite sagely responded that it would be a better idea to bring the kids inside the portable and let them play in a quieter, less-overwhelming environment.  My son didn't want me to leave until she showed him a bookshelf full of games and invited him to choose one to play with.  He saw the K'nex box, and pointed at it, and I was immediately forgotten. 

I'm reading through the class information and nodding my head over the conceptual outline of the program.  They'll be working on social skills utilizing Michelle Garcia Winner's Social Thinking program.  The program focuses on motivational rewards based on "catching" the kids using "expected" behaviors rather than consequences, and academics begin when each individual student is prepared to cope with the social challenges of being inside a traditional classroom for short periods.  Considering my son spent most of kindergarten curled up in a ball on the floor, this is good news.

With the smaller class size he'll be less overwhelmed, and he's in an environment where every child in his groups shares some overlapping issues with him. 

I feel like he's found his place. 

 

Extended Resource Room

The IEP team met today to plan for next year.  It was a full house today.  C's dad came, and aside from his teacher, the school psychologist and the resource room teacher, we also had a teacher and psychologist from another elementary school, the vice-principal, the occupational therapist and two representatives from the district who had observed my son in the course of the year.

We all discussed our observations of how he has been doing, and not one person in the room disagreed that a general education classroom would be appropriate for him next fall.  The next question, then, was where should he be?

Our district has a group at a different elementary school called the Extended Resource Room.  The kids in this group, all 11 or so of them, are mostly kids with Asperger's, sensory issues, or if not formally diagnosed, still clearly on the spectrum.  All of the kids in the group are extremely bright, but their reactions to their environment and their social behavior seriously interferes with their learning. 

C will join this group in the fall, and as often happens in my life, random strings of connectedness bring me to the knowing that this is the right path.  I already know two children in this group, but from entirely different areas of my life.  A woman who was on my team at the last orienteering ride has a grandson in this program.  And, as it turns out, so is SG's niece.  Go figure.

There is one teacher and two para educators for this group of kids.  They use daily task charts and a reward system to assist them with structure and expectations, and as they improve their behavior and become ready for academics, they will either receive academic instruction within the small class, or if they are ready behaviorally, they will join the general class for periods of time during the day.  He will have transportation, and he will be in an environment where the adults know how to cope with him when the inevitable setback occurs.

This scenario is exactly what I was hoping for and I couldn't be happier that the district and the school are working so diligently to meet my son's needs. 

Today is a good day.

On to first grade...or not

I shot an email off week before last to the school counselor to find out when we would meet to discuss progress on his IEP and start making plans for next year. 

One of the things we talked about the last meeting came up in her reply email, and so now push has come to shove and we need to make some decisions. 

Kinder started horribly for my son.  I had worked hard to identify what his day would look like and help him to have reasonable expectations that the school then blew out of the water when they changed him from one teacher and one classroom to another teacher and another classroom, and then screwed up on his bus not just once but twice, and none of that really helped me get off on the right foot with the school, either.  Its not always fun to be the "that parent," but sometimes its useful. 

The year has flown by, and while he's made tremendous progress, there's a long way to go.  Our IEP goals were extremely basic: 

Follow directions two out of three times

Limit disruptions in the classroom

Join activity without continuous teacher prompting

Use kind words toward others

By the marking period mid year, his official progress toward goal was a "P" meaning he was making good progress, the objectives were not yet met but there was a reasonable expectation that they would be.

BUT.  That doesn't mean he's ready to move on to first grade.

Even if he meets the goals for the year, there are still concerns as to whether he has the stamina to do full-day school.  He has more good days than bad days, but his ability to rebound from setbacks is very limited.  In kinder, a bad morning means he only has to hold it together or have an adult observer to stay with him for a short time until he can get on the bus and go to aftercare.  Full day school would be a much different animal.

I'm not sure where we're going to end up next year.  I have no idea what the team is going to recommend and honestly, right now, I'm not sure what it is that I think needs to happen.  My next steps are to understand what the options truly are -- and then look at him objectively and determine where his needs will best be met.  Would he repeat kindergarten?  Enter a special program where he was in the regular classroom part of the day and in resource room the rest of the day?  Do half day of regular school and go to his aftercare group for the rest of the day? 

I want to be able to send him into the next school year with a much better start than we had this year.  I think things wouldn't have been so bad for him if the school year hadn't been so screwed up from the get-go.  I think next year will go better if we, as a team, do a better job of helping him to know what will happen and then make sure things go reasonably within expectations.

Its a lot to think about, and I really need to get this one right.

Normal is extraordinary

I'll never forget A's kindergarten graduation.

Here she is with her class on stage, waving at me:

And then here she is afterwards, having ice cream with me:

What these two pictures don't show is what happened in between, after she waved at me in that picture.  She realized that the gymnasium was full of people and that those people were looking at her.  She fled the stage and we watched her kindergarten graduation together, from the audience.  It wasn't the first time she'd done this.  Both she and her brother refused to participate in their preschool's "graduation" ceremonies too, where they celebrated each advancing class.  It wasn't until the end of second grade that I got to enjoy seeing my daughter perform with her classmates in a spring offering of musical selections.

When we got the note home that the kindergarten classes were going to present a Nursery Rhyme Rap Night, I smiled and tucked it away.  We would go, of course, but I had no expectation that C-man would join his classmates in the front of the gym.  His teacher and I had discussed it during our conference, there were days when the classes were practicing that he just couldn't bring himself to participate, although there were times that he joined in just fine.  The noise in the gym, the knowing that other people were looking at him, these are incredibly difficult things for a kiddo with his issues to process. 

The first time I thought that I might never see my kids do a school play or a Christmas pageant, I cried.  I mourned.  I felt cheated and robbed.  Over time, though, I grew to accept.  There are lots of things my kids can do, so what if being on stage isn't one of them?  I got over myself.

God is funny.

When we arrived at the school and we saw the other kindergartners lining up to go in, I said "Look, there's your teacher!  Go ahead and go up there so you can stand with your class!"

He gave me a somewhat desperate look, but then he surprised me by actually leaving his sister and I and walking over to his class.  A and I went into the gym and found chairs in the second row just as the three classrooms filed in onto the risers.

As the teachers moved the kids around to get them lined up and centered, he found me in the audience.  He looked very uncomfortable but much to my surprise he didn't try to flee the stage. 

 

 

And up there he stayed the entire time.

He didn't sing much and he got just a few of the hand movements in there,but up there he stayed.  And when they were done he was so proud of himself.  And I of him.

I'm still smiling from ear to ear.

For your viewing pleasure, MY SON.  ON STAGE.

 

 Things look pretty awesome up here from cloud nine.

We have a plan

Sometimes I feel like the White Rabbit, running from place to place, checking my watch, frowning and rubbing my forehead over how behind I am and worried over all that needs doing.  Someone will kindly mention a chore or task they notice needs to be taken care of and all I can say is "I'm sorry, I'm sorry, I'll get to it.  When I have time."  or "When I have money."  And as neither of those commodities appear anywhere immediately on the horizon, I putter and mumble.  And cope.

Nonetheless, I am able to focus on the immediate needs and so long as I can hold this car together with string and paperclips, she'll drive.

I've got a phone meeting with Social Security next week.  I'm trying to get SSI for C, which would give me the capital to get him in with a local therapist who is probably the best we could find here for what my son needs.  Since he's not in my insurance plan's network, the out of pocket is prohibitive for us.  The extra assistance would make a big difference for him.

His IEP team gathered yesterday and I signed off on a draft plan for him. 

Our goals for the next months are simple.  There are three:

C will follow directions two out of three times, which I guess would be an immense improvement over "Zero out of infinity-thousand times."

C will learn to limit his disruptive behavior, for which his fellow students will be grateful.

C will join group activity without continuous teacher prompting.  He currently has difficulty participating in circle time and group crafts.  Part of the problem is that he is visually overstimulated, so if someone is next to him or behind him, his attention is drawn to the distraction and not to the work at hand.  He is so easily overwhelmed by too much noise and activity that many of the things that most kids consider to be fun are just painful for him.  Unfortunately he often reacts to the stimulation by provoking the students who's inadvertently snagged his attention.  We're working on that.

He'll have resource room time daily, and be in his regular classroom the rest of the time.  His teacher will receive support from the occupational therapist in strategies and tools to help him with his sensory issues. 

Throughout the day he'll get breaks for "heavy work" and movement activities and have access to support staff, a "buddy classroom," self-controlled activities and sensory materials on an as-needed basis.  Periodically the school psychologist will observe him in the classroom setting to assess his progress.

He'll also have accommodations for state-mandated testing and he'll get transportation.  His grades will be based on effort and work completed and determined by his teacher and his special education teacher.

At the meeting, his teacher showed some materials she's made to help him assess his own success throughout the day.  She's made a visual representation of regular activities, and for each, C chooses a happy face, a neutral face or a sad face to affix below the activity to indicate if his participation or following of instruction/expectation was good, OK or not successful.  She keeps the completed sheets as a record of his progress.  Its heartwarming to me to see how engaged and enthusiastic a participant she has become in this Grand Plan to help my son.

As plans go, I suppose this is a good enough one to start with.  I had hoped it would contain the secret formula to releasing his innate abilities and identify him as a college-ready genius.  I think, though, that I can be content with "following directions two out of three time."  Start small, right?

I wish I had an IEP team to help me make a plan for all the stuff I need to do.

No bad apples

I can't count the number of times I've heard people comment, "When we were kids they didn't have all this ADHD stuff.  Kids either behaved or they got in trouble, period."  If you have kids like mine, you've probably heard it endlessly as well.  And you've probably been as frustrated as I have, trying to explain all of the things that are wrong with that line of thought without sounding like you're an ineffective parent or just making excuses. 

The pervasive belief in our society is that children misbehave to get attention, or because they're "bad" or "acting out."  They misbehave because they're not being parented appropriately or disciplined enough.  My children have disorders that walk hand-in-hand with behavioral challenges, and as their mother and their advocate, I'm compelled to actively challenge this kind of thinking. 

In The Explosive Child, Dr. Ross Greene writes, "Children do well if they can."  Many people think rather that children do well if they want to.

Consider the impact of that statement. 

I think of my son, in his classroom, out of his seat, touching everything, ignoring instructions, tantruming when he feels other kids are looking at him or when he has to cope with a change from one task to another. 

He doesn't want to act this way.  He's not seeking attention.  He doesn't like being in trouble, he doesn't like being different, he doesn't like not being liked.  He does these things because he can't help himself. 

When we understand our special needs kiddos in this context, almost everything about the way we parent them changes.  Dr. Greene says that the difference between the kids who can do well and those who can't is simply that the kids who can't lack the skillset they need.  That's where they need their parents, educators, counselors, therapists and doctors - they need us to help them learn those skills.

Once we grasp this, we can stop looking at the behavior and look at the child underneath it and start to discover what they lack and where we can assist.

I posted several times about the disconnect between my son's teacher and me.  I felt that she was focusing too much on the things he was doing wrong and not seeing the same child that I love with all my heart.  The best thing about people and circumstances, though, is that they are always changing. 

At our last team meeting, I noticed a change in how C's teacher talked about him and the things that were happening in her classroom.  She seemed excited to relate some of the things she was finding helpful, and there was a shine to her that wasn't there before.  After the meeting, when his counselor and I were talking privately, I remarked on this.  The counselor told me that she, too had noticed a change and not only that, but that the teacher was now contacting her frequently with ideas and questions on things that might help my son.

Then yesterday, when I picked him up from his aftercare, the director (who has been a wonderful friend to us) passed along a little bit of information that brought tears to my eyes.  She had been late arriving to pick him up after school, so the teacher had seen the rest of her class off and had taken C back to her classroom.  K apologized for being so late.  The teacher responded, "Oh, I don't mind that at all.  It gives me a chance to have some one on one time with him, and I enjoy that so much."

She gets it.

He will do well IF HE CAN.  And she wants to help him get there.

WIN.