I am sad… that Little N has Autism

We had an important meeting this week at Little N's school.  It was his Special Ed reevaluation and Individualized Education Plan meeting where the school psychologist and Little N's teacher and in-school therapists discuss his current scores on their examinations of him with us, his parents.  We also planned the goals for his next year of school.  It was an in-my-face discussion of all the places where Little N continues to fall behind peers his age.

I was anxious and preoccupied leading up to the meeting.  When we first received the notice for reevaluation I was nervous.  Little N was thriving in the Special Ed class, what if they wanted to pull him out of it! Then we received his report card.  Little N was scoring below average in most areas of the report.  What if he never got out of Special Ed?  What if he could never hold a job, make friends, offer compassion to someone… the fears and questions took over.

During the meeting, I took notes on all of Little N's challenges.  They are painful to me.  It's as if Autism gets in his way of being him.  But then I also try to be pro-Neurodiversity.  I try to acknowledge and accept and advocate that there are many ways of being, perceiving, and expressing oneself in the world.  We've got a smattering of typical, acceptable ways to be in society but kids like Little N reveal more of what's possible.  Autism doesn't necessarily get in the way of him being him; it's part of him being him and part of what he offers his family, classmates, teachers, future employers, and all the folks that come in contact with him.

I put a good face on it on Facebook.  And it was a good meeting.  Little N is a joy to work with.  Each one of the experts in the room repeated that in one form or another.  They enjoy working with him.  He's eager, playful, fun, retains what he's learned, makes excellent progress.  And... he scores below average on all of their tests.

I brought all of this to my much-loved therapist.  "I'm sad," I told her.  She murmured understanding.  Then she asked me, "How sad do you feel?"  I couldn't answer.  I need time to sit with myself and just feel all the emotions tangled up in my son's Autism.  She could have said, "It's not all about you."  But she didn't.  Because my feelings about my son's challenges are about me.  I'm allowed to feel sad sometimes, even as I get to be encouraging and curious and supportive a lot of the time.

I have some sense of where the sadness comes from.  My grief that the perfect, typical boy I thought I had is gone, along with all my unarticulated dreams and expectations for him.  My memory of the close relationship between grades and self esteem: A means I'm awesome, D means I'm dumb.  What could "below average" possibly mean in that matrix?   My fear of the world out there, of cliques and cruelty, where there is very little room for someone different.  My pervasive doubt that I can in any way equip him for that world and the challenges that await him there.

It was a good meeting.  Little N is a joy, to me and to his team.  He is making progress that all of us can see and celebrate.  Someday he will be mainstreamed into a general ed classroom.  I have reinforcements in the form of his team, and even those dreaded reports, to help me teach him the tools he needs for the days ahead.  All of this is true at the same time that my sadness is true.

gratitude Sunday: robot costumes

from this...

to this!

Historically, Little N does not like Halloween or costumes. We've never pushed the issue and let Halloween be about pumpkin carving.  This weekend, his dad suggested that there might be robot costumes.  That was very exciting!  And we found one!  A yellow Transformers costume.  Little N says it makes him very fast.

gratitude Sunday: his sleeplessness

peeking into his room I discover he is, again, not sleeping

instead he is building a farm (see the tractor) narrating his work

and singing little made up tunes as he goes

on these odd, freshly alone, nights, he is my good company

even as I tell him, "get back in bed!"

gratitude Sunday: suppertime seriousness

The real seriousness is that Little N had started on a food jag, such that he was subsisting on yogurt and M&Ms.  Not exactly fuel for growing big, strong, and smart.  So we were thrilled to get him to eat his old mushy favorites - pasta with green bean puree, spaghetti sauce, and apple sauce.  The cake... was for me.

this is what progress looks like: courage & sharing

Here's an FB post from L about Little N's big day yesterday:

Little N's autism progress. 1) Noises can be a big issue for autistics. Little N dealt with a fear of train noise, asked to stand above train on pedestrian bridge, he did it with no trouble at all. 2) Social skills are a big issue for autistics. Little N was at a park with his big dumptruck. Two boys started off with it while Little N was swinging. He ran over, said "that is mine" in reasonable tone and volume, they gave it back. Then he said "we can take turns, first my turn, then yours, then yours" and proceeded to manage the sharing the whole time. At the end of it all the boys thanked him like he was some sort of charismatic leader. 

Little N, you rock. The world's going to remember you.

gratitude Sunday

It's an experiment that Little N did with L!  They collected rainwater in a special jug outside in yesterday's big storm (thunder, lightning, hail, gusts of wind, rain).  Then they brought it inside so Little N could paint it green (his favorite color?).  The theory behind the experiment is that the rain comes from the clouds so painting the rain green is the kind of like painting a cloud.  More specifically, it's about change, a word and an idea that Little N has been working with all week at school (blending colors and planting seeds).  Here we changed the color of rainwater.  

What I love about this and am grateful for is Little N's imagination continuing to appear in our daily life.  And I'm grateful that L is so keen to respond to, expand, and carry out experiences like this with Little N.  It's the best part (and we're keenly aware of the worst parts) of having L home full time as a stay-at-home dad right now.  He can support Little N in these explorations in a way that he likely couldn't if he was working full time.

As for me, my nights and weekends are fuller and richer as Little N invites me to play with him a range of imaginative games like being salmon in a river or battling laundry baskets as sparring robots.  And then there are new concepts he's trying out like "work" as in sitting down and doing a bunch of puzzles together.  I feel more engaged with him and like I'm getting to know him better as his ideas and interests are expressed in ways I can understand and participate with.

We're the lucky ones.  And I feel that keenly as well.  We have a child on the spectrum who can speak, play with us, and continues to develop his self expression in ways we can access.  I didn't know if we would have these things when they handed us the diagnosis of Autism Spectrum Disorder.  I grieved the loss of them and tried to loosen my expectations for this child, to wait and see what would be, but still I hoped.  I hoped for ways to make sense to each other, hoped to know his thoughts and interests, hoped to connect with him.  And it's all happening.  Gratitude isn't a big enough word to express my joy, relief, and delight in knowing my son in these new and fun ways.

this is what progress looks like: spaghetti sauce

We've added chunky spaghetti sauce to Little N's list of foods!

His favorite way to eat it is on top of pizza.

He's very proud of the fact that he eats the chunks of vegetables and green leaves in the sauce.

We're pretty proud too.

Here's a photo he took of what he usually eats. 

Yogurt, applesauce, and pasta with green bean puree.

In addition to these he eats: bread, apple slices, bananas, and milk.  It's a pretty short list.  So we celebrate every new little addition.  Daddy saw him eat graham crackers and raisins at school!  We've got to figure out how to get that to happen at home too.

oh fiddlesticks!

L has been asking me about a toy he remembered from childhood.  It was wooden, and there were these round wheels and then different lengths of spokes and you used them to build.

I found them at our local toy store under the brand name of Fiddlesticks, although they also go by Tinker Toys.  I picked up a set of them to keep Little N and L busy together during the Thanksgiving break.  The toys practice kiddo's fine motor skills, his imagination, his verbal skills (asking for help) and his social skills (building with L).

First night with the new Fiddlesticks and they are a hit!  For kiddo and his plush pals.  

this is what progress looks like: successful IEP meeting

Parent Teacher (& Kiddo) Conference this morning at Little N's school.  We met with Little N's teacher, his Occupational Therapist, and his Speech Therapist.  (They look so young to me!)  We learned that he is making progress on all of his goals and has actually achieved a few of them.  We also received some helpful suggestions on what we can work on at home to help him to continue to progress.  We are so grateful for this terrific team and their work with Little N.

To celebrate the good news, and Little N's good behavior during the meeting, we visited the Goodwill store on the way home.  Sitting next to the bicycles was one scooter.  Kiddo has been asking for a scooter for months.  I looked up at L, "Is this for sale?"  And $8 later it we were walking it out to the car.  Kiddo was ready to ride it immediately.  A quick trip to the park and he was on his way!

Next meeting: preparing for the transition to Kindergarten...!

halloween punkin

Little N does not dig Halloween.  Everything familiar is suddenly strange and out of step.  Costumes and trick or treating do not appeal to a little person anchored in routine and reliability.  So we skipped that part of the holiday this year.  But we still made time to "open the punkin" and he enjoyed that very much.  Hope your Halloween was Spooktacular!

first week of school

First day of school!

We resumed preschool this week.  Little N is in the same program but with a new teacher.  A few of his old classmates remained and of course the aides and therapists.  We are thrilled to say that he loves school and has adjusted back into the routine very smoothly.

Adding to our joy - he's eating new foods!  Kiddo is a severely picky eater.  He only eats 5 foods.  But each day this week we've received a note home from his teacher detailing what new foods Little N has tried during snack time.  We are so excited and proud of him!

orientation

We attended Little N's preschool orientation yesterday.  Afterwards, L commented that I didn't really need to have gone since we already knew most of the information from last year.  (Little N is returning to the same program but with a new teacher.)   I was so glad to have gone for the experience of being there.  

I met his new teacher and now we have faces for names.  I was recognized by the classroom aides & Occupational Therapist as Little N's mom.  I got to visit with other families - see the range of abilities (strengths and challenges) of the students and empathize with the range of emotions of other parents.  All of us eager.  Some of us nervous.  Some of us ready for a new season to begin.  

this is what progress looks like: rock star!

Little N's imaginary play is stretching and growing these days.

 Mommy's little Johnny Cash.

water play!

playing school

I'm sitting in my room overhearing Little N in his room playing school with his stuffed animals.  He's reading to them in his "teacher" voice.  "Do you like this dinosaur?"  "Look, Gorilla, this is orange."  "Please sit down..."  "We read this book!"

making coffee

We've had a rash of uncontrollable inconsolable tantrums lately.  Little N gets wild with emotion, kicking, banging, spitting... and nothing and no one can reach him.

Nothing, except making coffee.

The first couple of times it happened I thought it was a fluke.  He was in the throes of his fit when he said, "I make coffee."  Then he bouncy walked to the kitchen with purpose and authority.  I filled the back of the percolator with water and he measured out two scoops of coffee.  He hovered over the top of it to "eat the steam" that rose up as the coffee dripped out below.  When the coffee stopped bubbling he poured it into a mug and waited for me to add the milk.  

A fresh cup of coffee seemed to issue a new attitude.  It's now become one of my resources when we hit those impassable places of mood and energy.  "Do you want to make coffee?"  "Yeah, I make coffee."  It grants him a little pause, and focus, predictable steps, control, and a finished product; a solid and solidifying process that seems to shift him from the bad reality into at least a neutral one.  

By the time it's all said and done, I usually need a cup coffee.  

IEP meeting

We had the meeting for Little N's second Individualized Education Program (IEP) this week.  We met with his teachers, an aide, and the school's Occupational Therapist and Speech Therapist.  I was nervous, anticipating judgment, like they would tell us that we weren't doing good enough with North.  L was excited and looking forward to it, like they would tell us how great Little N is doing.  (We certainly think that he's great!)

These can be delicate meetings.  Parents see and know a child differently than teachers and therapists do.  For example, parents might want a child mainstreamed in a classroom with typically developing children and the school may plan to place the child in a special education class.  There's a lot of opportunity for strong emotions, conflict, and difficult conversations.  The bottom line for most parents working with an IEP is to not sign anything that they don't wholeheartedly agree with.

We've been very fortunate with both of our IEPs.  When we look at Little N's school skills we're all seeing the same strengths and challenges.  The IEP and discussing it with the team, gave us some new things to work on at home.  Some things are easier to practice than others.  Counting, coloring, and coloring with scissors are concrete activities that we can include in our play.  Social skills and teaching Little N how to manage his anxiety around groups of active, unpredictable children may be more a matter of time and gentle exposure or opportunities.  Similarly when we think about softening his fixation on particular routines to cultivate greater flexibility and a more adaptive person.

Overall, I am pleased, impressed, and so grateful for Little N's team at the school.  They see, care about, respect, and enjoy him.  I trust their advice and I'm glad to have clear recommendations for what we're all working on with him in preparation for his next steps in learning and playing.

Turns out, I didn't have anything to be nervous about.

lentil loader

We've been enjoying a lot of sensory play these days!

Our friend and babysitter Miss A introduced red lentils into our repertoire. 

We find them to be especially good served with rice.

birthday boy!

Little N turned 4 yesterday!!!

He loved blowing out the candles, so we did it a few times.

And he learned to sing Happy Birthday at school, so we did that a few times too.  

His favorite present so far? His new guitar!  Just like Daddy's.  

redefining Autism?

My husband wanted me to read this article New Definition of Autism Will Exclude Many, Study Suggests.  Little N meets the criteria for a diagnosis of Autism Spectrum Disorder (ASD), although maybe he’s not a severe as many of the experiences that we hear in the media and read on blogs and in books.  So the article has me concerned about the future of what we recognize as ASD and the practical implications that the proposed changes will have on my son’s life and the lives of children like him.

In one of Little N’s earliest evaluations I asked the therapist for a distinction between cultural norms and pathology.  What makes Little N “on the spectrum” in some clinical, pathological way rather than a kid being raised by parents who are a little outside the norm?  (For example, we didn’t have a car but one of the evaluation examples referred to the parts of a car, so of course N missed it.)  The answer was that the line is crossed into pathology when the child’s differences impeded their ability to grow, learn, engage with peers, participate at school, etc. 

I agreed to that definition and the diagnosis that followed largely because it’s actionable.  It set us up to get the early intervention program, developmental preschool, in-school supports, and insurance assistance for therapy that Little N needs to be able to manage the challenges that Autism presents.

But like I said, I still wonder about the issue of severity.  Some folks tell me that they can’t tell he has Autism at all, and I’m not sure how to interpret that.  I do know that Little N is a very different child at home (lots of eye contact, chatter, and independent mischief) than he is at school (withdrawn, clinging to adults, needs support to choose activities).  All this leads me to see Little N in a grey area of the Autism Spectrum where the scattershot of his challenges land him just enough inside the line to render a diagnosis. 

So to me, changing the definition of Autism is a source of anxiety.  Will Little N be redefined off of the spectrum, putting more distance between him (us) and the tools for his success?  That’s what seems to make the positive difference for folks on the Autism Spectrum.  Tools.  Supports. Programs.  Folks on the spectrum manifest a broad range of skills and abilities that needs some distinct tools to engage with neuro-typical folks.  This might be as simple as speech therapy and therapeutic playgroups or as intricate as highly specialized speech software for a particular design of computer.

The article doesn’t clarify why they might change the definition of Autism.  And it seems that there’s disagreement about how many people the changes would really affect.  So maybe it’s too soon to get upset?  Or maybe it’s exactly the right time to say a few things that are important to me:

• My child is different in such ways as place him on the Autism Spectrum.
• Recognizing that, as his parents, his doctor, his teachers, means that he can get the tools and support that he needs to engage with others, learn academics, eat, play etc.
• The current definition of Autism facilitated that recognition and access to services.
• The current definition of Autism provided this for my son and for millions of other children.
• The diagnosis of ASD and the supports it can point to, helps us to see our children more clearly, know them, experience life with them, and equip them to experience life on their own.

I understand that the high number of children being diagnosed with Autism (cited at 1 in 150 and even 1 in 100) has raised concern and questions.  Is it a new epidemic?  Is it the result of a too vague definition?  Has it always been this way, and unrecognized?  But these are human beings, children and families, classrooms, and communities that we’re talking about.  Not research’s numbers and abstractions.  We’re talking about real people and the challenges that they (we) really wrangle with every day.

We need more time to understand the Autism Spectrum before we can change how we define it.  Maybe there’s another approach to take.  Rather than tightening the definition to reduce the number of cases, we might define categories of criteria and severity along the spectrum as well as the tools and therapies that best support them.  Maybe we share stories of life on the spectrum and become more familiar with neuro-diversity.  Those are two thoughts off the top of my head.  I’m sure folks more embedded in the issues can come up with lots more than that.

But now my thoughts are spiraling out of control away from me.  Redefining Autism strikes me as a bold example of socially defining reality – in this case by a group of experts to then be rolled out to families like mine.  My thoughts surf other examples of socially defined reality: race, gender, sexuality, religion…etc. Not to mention the struggles we’re born into as part of these definitions: typical and atypical, majority and minority, privileged and underserved…etc.  Autism and neuro-diversity fits in here too. 

I don’t have a tidy conclusion.  This is a big issue that I don’t feel like I have any say in.  I hate that feeling.  I’m grateful for what Little N’s diagnosis has made possible for him.  I’m concerned and curious as to where the definition of Autism will go and how Autism families can participate in that discussion.  Where can my voice, and my family's experience, be heard and counted?