1st Practice

I press my hands together to keep them from shaking as I look back over my shoulder at the Roc in the dark, his eyes are wide and his face blank.  The oncoming traffic momentarily lights up his face and I recognize his look to signal fear.

“I’m anxious…” he says staring straight ahead. “My tummy feels funny…”

“Does it hurt?  Or is the funny feeling….a fluttery feeling like there are butterflies flying around inside your belly?” I ask, wondering what exactly my literal boy is picturing in his mind.  Does that explanation even make sense to him?  He’s nervous, he’s never described nervous before, I do an internal fist pump, progress noted.  A new emotion to sit next to happy, mad, sad, and anxious in his little emotions piggy bank.  Another step forward in understanding his own emotions, a step to the side in helping him learn to manage those emotions.  All this movement equaling progress, of which I’ll never take for granted.

His clear blue eyes lock onto mine and he says, “Yeah, fluffy, my tummy feels fluffy.”  My heart does a little flutter, I love to see his eyes, my heart will always remember when he couldn’t look at me and how I longed to look into those beautiful blue eyes.

I swallow my smile and tell him that it’s normal and that what he is feeling is called nervous.  He asks me if I feel nervous and I tell him yes, a little bit, and immediately wonder if honesty of the best policy in this situation, too late to take it back.  I rush to tell him other times I felt nervous and that when I was a child like him, I often felt nervous when trying something brand new.  Again, I wonder if this way of explanation is the best way.  Does it make sense to him?  Does it help him to know that I feel nervous when I don’t know what to expect?  These thoughts tumble together with the fear I’m holding in my shaking hands.  What was I thinking?  He looks so scared!  Did I make a huge mistake?  What if he freaks out?  He will be so upset if he loses control in front of so many people!  What was I thinking?  I give the Roc a small smile and turn back around, watching the lights flash across GC’s face, his hands tight on the steering wheel.

We pull in to the parking lot, park, and get out.  The Roc appears white with fear and he limply holds my hand as I gently pull him toward the building.  As we enter the gym the Roc stops, rooted to the spot and I know I must find out what he is supposed to be doing very quickly.  Parents are leaning up against the walls while the boys shoot baskets, all baskets occupied by at least 8 boys.  I see a very tall man holding a clipboard and approach him, smiling, and ask if the Team B kids are in a certain spot.  I’m hoping that I’ve masked my own nervousness, also knowing that I am one of easiest people to read on the planet.

He tells me that all the boys are shooting and they’ll start the actual practice in a little while, and that he is one of the coaches for Team B.  He asks me where my boy is so he’ll know what he looks like and when I look back over my shoulder the Roc is not where I left him.  My eyes sweep left and I spot GC who smiles and points to the Roc…who is standing in line to shoot baskets.  My eyes widen and then I point him out for the coach,

“There he is….um, did you and the other coach get any information on the kids before tonight?” I ask, remembering the section in the online registration form asking about disabilities where I wrote, The Roc has autism.  He loves basketball and really wants to be a part of the basketball program.  His biggest issue will be anxiety and sensory.  He can get overwhelmed in chaotic situations and will need extra prompting and help navigating.  I remember the message I left at the community ed office asking if I could sign him up, was he welcome? I had stammered before I hung up.  I had a nice conversation with the woman who called back and she told me to sign him up, he was definitely welcome, and he could participate in what he felt comfortable with.

“Nope, nothing,” the coach says.

“Well, I want to let you know that the Roc has autism,” I start, searching the coaches eyes, hoping he is a patient man.  ”He really wants to be here, he loves basketball, he is very anxious and that is one of his biggest issues right now.  He may get overwhelmed by all the noise and movement.  He will need you and the other coach to repeat directions to him and give him a little processing time to answer you,” I tell him, hoping that it’s not too much information, knowing that this first practice will be an exercise in organized chaos.

“Okay, well I’m glad to have him, thanks for letting me know more about him, we’ll start the actual practice in a little bit,” the coach says, smiling at me, and I feel that all too familiar bite in the back of my throat.  I will cry tonight, probably soon.

I see GC leaning up against the wall and I go to stand next to him.  ”I got lucky and talked to the first guy I see holding a clipboard and it happens to be one of the Roc’s coaches.  He hadn’t gotten any information before tonight about the kids, so I told him about the Roc,” I tell GC.

“That’s good…look at him Kim…”  GC says, nodding his head toward the Roc.

I look…and my eyes prick with tears that I desperately try to blink away.  There is my boy, he just reached the front of his line, and when he sees me looking he smiles this little lopsided smile and his nose twitches.  It’s not the face spliting grin I so often capture with my digital camera.  This is the anxious smile, when he is somewhere doing something that’s hard for him, but his enjoyment is close the level of his anxiety,and they are battling.  He shuffles forward, shoots and the ball goes in.

“That’s the third one in a row he’s made,” GC says.

We continue to watch the Roc shoot.  He makes it most of the time, and when he doesn’t he just grabs his ball and gets back in line.  No shouting at the ball like he often does at home.  The coaches blow the whistle and tell all the kids to line up on the black line ringing the gymnasium.  My heart goes into overdrive as I watch the Roc try to figure out what just happened.  He follows the herd of children, and runs to the end of the gym farthest from where we stand.  I squeeze GC’s arm and ask him if he is nervous.

“Yeah, I’m super nervous,” GC responds rubbing his palms together and then folding his arms.  ”But look at him, he’s doing it,” he says, again nodding in the Roc’s direction.

“I know, and I just can’t believe we are here.  I know that I’m going to cry tonight, in fact I might cry right now,” I tell him, those tears threatening to fill my eyes once again.

“Well don’t cry yet, it just started, see how it goes first.”

“I know, I know, I just can’t help myself,” and as I say this I have a vision of the Roc having a tantrum in the middle of the gymnasium and myself rushing onto the floor to try to pick him up, arms and legs flailing.  I push that vision away as I watch him, he’s not paying attention as the children are counted off, 1,2, 3, 4.  When the coach gets the end of the line he shouts, “1′s over here, 2′s over there, 3′s over there, 4′s right here!” pointing to the four corners of the gym.  ”GO!” he shouts and all the children run in opposing directions.  I see the look of shock on the Rocs face as he stands still in his spot.  I wave my arms over my head and miraculously get his attention, hold up 3 fingers and point in the direction he is supposed to go.  He runs toward where I pointed.  I widen my eyes at GC as I return to our spot.

“If he gets through this tonight we may really pay for it at home,” GC whispers to me.  I nod in reply and my mind flashes to the ends of outings when the Roc had reached his maximum and fallen apart.

“I know, and it will be worth it,” I respond, sending up a silent please let him make it through to the autism gods.

As we continue to watch the practice I have to hold myself still.  The Roc misses many of the directions because he is so distracted by everything going on in the gym, and other times because I can tell that he has checked out.  I watch as he follows the other boys in his group when they start a new activity, I watch him watch them, and then I see him imitate what they do.  He puts himself at the back of the line every time and he watches.  I see him listen to the coaches when they tell him something directly and he tries.  At all four stations he tries, except for the last one where the boys form 2 lines and they were to go after the ball that the coach tosses toward the basket.  The Roc is one of the least aggressive boys you will meet, and even though I can tell he wants to go after the ball, he holds back.  I see the other boys nudge him forward when it’s his turn, but it’s too much for him.  It is the only station we see a glimmer of frustration.  When the rebound comes in his direction and it doesn’t land in his outstretched hands, the other boy gets it instead, and the Roc turns toward us and stomps his foot.  I shake my head, point to my eyes, and then point back to his coach.  When he turns around GC and I look at each other.

“Thankfully, that station was last for him,” I say to GC, my eyes wide.

When practice is over GC and I walk down to collect the Roc and I ask him if he had a good time.

“I was at basketball practice Mommy!” he exclaims, his face plastered with that characteristic smile.

“He did good,” Team B’s second coach tells me.  I introduce myself and ask him if he was told anything about the Roc.  When he says no I tell him.  I tell him that the Roc is on the autism spectrum and he really wanted to be here tonight, but it was hard for him.

“I could just cry, I’m so happy he made it through and he had fun,” I say, my eyes misting over with tears.  ”A couple years ago I didn’t think this was a possibility for him, he’s come so far,” I choke out as an explanation for my watery eyes.

“Well, he did good and we are happy to have him on our team,” the coach says, looking directly into my eyes and smiling.

“Thank you,” I whisper, those damn tears threatening to overflow.  ”That means a lot to me.”

We prompt the Roc to say good bye and we navigate through the crowd to the exit.  As we walk through the front door into the cold, dark night GC asks the Roc what he thought of basketball practice.

“It was…..awesome,” he answers.

It was, and so is he.

I process as we ride home, knowing that I must record this night.

Sucker Punch

Written on Wednesday night when I came home from a evening out in the neighborhood.

I was feeling the happiness only a few margarita’s can provide, buzzy, light, and slightly numb.  I needed it, the evening had completely fallen apart around dinner time.  A meltdown.  Lots of screaming — you can’t have a meltdown in this house without the eardrum shattering vocals.  I wanted to get out, but I also didn’t want to go.  Because sometimes it feels like an act, like I am a big fake, because it feels like I have nothing in common with these other moms.  My desire to escape won over the part of me that wanted to hide alone in a bathtub full of bubbles.  I caught my sister as she and her next door neighbor were leaving, they drove up the hill to pick me up.

But in the end the margaritas were not enough.  Because I cannot escape this reality, our reality, his reality.  It so often rocks me to my core.  And so even though I should be sleeping off my margarita(s), I am awake at my computer, clumsily typing out my thoughts, reliving the simplest of conversations.

I had told a cute little story about my 1st grade nephew calling me his “friend’ and then his “mom’s friend” when a classmate asked him who I was at school a couple weeks ago.  I mentioned that I also saw my 4th grade niece in the hallway and said hi.  I worried that I may have been too enthusiastic the last time I saw her, I wondered if I embarrassed her.   My sister reveals that her daughter tells her when she sees me at school…and that one day a classmate had asked her how she knew the Roc’s mom.  This girl’s little sister (a first grader in the Roc’s class) doesn’t like the Roc… those words came in like a punch I didn’t see coming.  I couldn’t help it, I deflated.  I tried to ask what was said, knowing that I wouldn’t know what actually was said, I asked who the girl was, who the sister might be, the faces of the Roc’s classmates flashing through my mind.  A name was dropped with a question, and I saw this girl in my mind and felt an internal crushing.

A little girl in the Roc’s class talked about how she didn’t like him at home or on the bus, it doesn’t matter where really, somewhere and enough times that her 4th grade sister knew who I was.  Knew who the Roc was.  Spewed that her little sister didn’t like my kid.  How many times has this happened?

Someone next to me piped up that her son didn’t seem to care about friendship and the ladies started sharing little bits about their own boys and friends, shaking their heads.  They went around the table, “it’s BOYS!” they agreed.  ”They just don’t care or communicate like girls do!” they said with smiles.  ”Boys just don’t do friendships like girls!” they took heart in their agreement.  ”Boys!” they sighed.   It’s just because they are boys.  What can you do? seemed to be the consensus.  Not for me, I felt no peace from these sentiments.

I looked down at the table, my eyes memorizing the color and pattern of the wood, swiping over the chairs, comparing them to the chairs at my parents house.  How alike, my mind registered as I detached myself from the conversation.   Because it’s so much more than the Roc just being a BOY.  So much more.  A gulf separates me from those who can shake their heads and mutter Boys! with a charming smile.  The mountain I climb stretches out before me, the peak hidden in the clouds.

A mountain I often feel that I do not have the tools to climb.  Wasn’t I supposed to take classes on this?  Where’s the instructor?  I forgot my book!  Do we have a quiz?  Aren’t we going to do a test run?  I don’t think I’m physically able!  Where are the clamps?  The rope?  Huh?  I have to climb now?  No safety net?  No fall back?  It’s just me?  What?  Are you kidding me?!  What if I fall?  Shit!  I don’t think I can do this!

I thought about my boy, my Roc, how hard he works to be in this world that doesn’t always make sense to him.  I thought about this little girl and wondered what her parents say about differences, wondered if she ignores the Roc, or if she watches him, giggling at him with other children.

My boy who is over run with anxiety all.the.time.  Who is mainstreamed, and as far as I’ve been told, is holding it together…but…who still cannot hold an unprompted conversation with a peer.  Who cannot read facial expressions.  My kid who struggles with change, who struggles with certain academics, who struggles to interact and fit in.  My boy who likes to be around kids.  Who cannot figure out why he doesn’t have friends…who recently cried when he told me for the very first time that he didn’t have a friend.and.it.broke.my.heart.  The air in the room was gone as his voice cracked and I held his gaze.  My boy.  He works so hard every day and 99.9% of people do not realize this about him.

That is what I thought about as they smiled and grumbled about the nature of boys.

Because it’s so much bigger than that for me, for him.  So much so that I do not have adequate words to describe what it is like to see your child struggle, to try to teach your child to read people, to say hello, to not scream when things do not go the way they want, and on and on.  Everything must be taught.  From the simplest steps to the biggest.  Everything.  It’s so much to carry, so heavy I feel crushed by it’s weight, by my fears of the future.

It is so much more than him being a BOY.  So much more.

As the buzz wears off, here I sit in front of a blinking cursor, not looking up, slightly grateful that the mountain peak is hidden in the clouds.  I’m scared to see how far we have to go.  I remind myself again that we’ve come so far, and we are still moving up.  One foot in front of the other.  I’ll carry my heart and my son with me.

Holidays, a Recap

I started a post about the holidays a couple weeks ago…and never finished it.  I have a few other unfinished posts in my dashboard, a couple in my head that are screaming to get out, (basketball! swimming!) and one that I wrote in a margarita haze last night after coming home from a neighborhood gathering.  But I am a little OCD and even though no one but the Roc is thinking about Christmas anymore I just have to say something about it, and of course post a few pictures.

The Roc was pumped about Christmas, our first here in Minnesota.  He was sad that we didn’t have any snow and I felt like a HUGE liar for telling him over and over since we got here in June that we would go sledding, and build snowmen, and that he would get to play with his cousin in the snow over winter break.  The anticipation of opening those presents under the tree and waking up to find more presents on Christmas morning was enough of a balm to relieve the brown Christmas disappointment.

GC wanted to keep his family tradition of having lots and yummy seafood on Christmas Eve so he got to work in the late morning making us a lunch feast, and don’t worry, even though he looks unhappy in the following photo, he is very happy…

I took one of my favorite pictures of the Roc while trying to get GC to smile for my camera, take note GC, this is how it’s done…

I wanted to photograph the food, but GC wanted to serve it up right away.

So I settled for a pic of my two guys,

the fried goodness,

and the Roc eating a lemon (which he tried to eat after we told him that his cousin Aiden in SC used to eat lemons when he was younger!)

The Roc was so excited about the presents from our extended family under the tree, and wouldn’t stop asking if he could open some of them that we let him pick three to open before we were due at my sister’s house for Christmas Eve dinner.

We had a lot of fun at my sister’s house that night.  The boys drank and told stories before dinner,

and after dinner the kids couldn’t wait to open a few presents from family.

I got a great shot of my dad,

and after all the presents were unwrapped the little boys opened up their new art stuff and went to work.

We exited around the Roc’s bedtime knowing it would be one night that he wouldn’t balk at going to bed and staying there.  He was just a little keyed up…

but he slept the whole night through.

I woke up to a little voice whispering that there were presents under the tree at 7 am on Christmas morning.

We didn’t know if we would ever get a reaction like we did last year, but there was one thing the Roc had been asking for.  The Polar Express.

He was pretty happy to get it!

My parents came over later that afternoon and we had dinner together.

It was wonderful and relaxing and fun!

The Roc had the following week off of school for “winter break” and by the time it was over I felt like I needed a vacation!  He had lots of new toys to play with so we played a lot, and he took a long bath everyday to play with his new boats.  We went over to my parents house the day before the left for Arizona to say goodbye.  I will admit to feeling a little teary when I pulled out of the driveway, I had gotten used to seeing them on a regular basis.  I took the Roc to see a movie one afternoon and he did great, only needing to be shushed a few times.

And now it’s mid-January, it’s cold and grey and I’m dreaming of spring.

Whew, now that this holiday recap is out of the way I can concentrate on the here and now, and those two subjects that are screaming for posts of their own – basketball and swimming!

3 Holiday Laughs

3 situations that had me chuckling to myself this week:

I ran into the Roc’s special ed teacher as I was leaving the school after volunteering in the Roc’s classroom on Tuesday.  We walked down the hall together and she said to me,

“You’re house must really smell…” and felt my eyes widen as I wondered how she was going to finish that sentence, “with all that garlic on your Christmas tree!”

I instantly knew what she was talking about as I heard the Roc’s voice in my head.

“Oh, Garland!” I laughed as she said, “It took me a minute to figure out what he was talking about.  He’s such a cutie and he insisted it was garlic, not garland.”

***

The Roc was quietly singing Jingle Bells while I loaded a movie for him to watch.  I turned around and asked him to sing louder, and sure enough,

“Jingle Bells, Jingle Bells, Jingle all the way.  Oh what fun it is to ride in a wondrous sleigh, HEY!”

I giggled, but didn’t correct him.  I would like to ride in a wondrous sleigh too.

***

As gifts arrive from our far away relatives I place them under the Christmas tree and the Roc has been very excited about the presents with his name on them.  One of his gifts had a teeny, tiny tear in the wrapping paper and he spent some time trying to peer into that little hole.  Yesterday I was on my computer upstairs and could hear the unmistakable sound of paper slowly ripping.  I tiptoed to the railing and looked down into the family room.  There he is with that certain gift…

Later when I asked him if he was looking at the presents under the tree he said, “Yes!  Guess what Mommy?  The hole got bigger in that present!”

“Hmmm, I wonder how that happened?” I asked.

“I stuck my finger in there and tore it,” he replied.

“So what’s in there?” I asked.

“It looks pink.  I think it might be a pink dress.  It says my name on it, but I don’t want a dress.”

I love his honesty.  Any other kid would have lied and said they didn’t do it, someone else did, or the dog ripped it.  That’s what I would have done at his age!

 

A Friend for Life

***I started this post on December 6 th, right after I opened this:***

Then life got in my way.

So here you go, the story of that box and one of my favorite people in the world:

I have wanted to write about my best friend Christa for a long time.  But how do you encapsulate and explain a person like her?  She is one of the kindest, smartest, most generous and caring people I have come across.  How many times have you heard someone described that way?  Does it sound false?  Cliche?

It’s all true.

I did not know her 4 years ago.  Autism brought us together.  When the Roc was diagnosed I told the few people I saw on a regular basis, one of which was my friend and neighbor Tracy.  I cried, and she cried with me, then she told me about her friend Christa, who she insisted I contact.  She told me Christa’s son was also on the spectrum, and that she could be someone to lean on during this difficult time.  That it would be good to know someone who went through the same things I was.  I told her I didn’t know, I didn’t feel up to meeting anyone new right then.

I just didn’t want to belong to that club.  I didn’t want to talk about it to someone I didn’t know.  I wasn’t ready to talk.  So I waited a few months.

Eventually I did call Christa and we had a long, heartfelt conversation.  I felt like I was talking to someone I had known for a long time and I felt like I was finally talking to someone who “got it.”  Someone who got the anguish and pain I was feeling, understood the depths of my fear and worry like no one else did.  We got together not long after, and then again, and again and again.  We got our boys together and found that it was nice for them.  Tracy was right, I did lean on Christa, I still do.

She has been the person I call or email when I feel that I am not good enough to do this autism mama job, not smart enough to figure out what the Roc needs, just not enough.  When I don’t think I can be the mother that the Roc needs me to be, I call or email Christa.  She says and writes all the right things.  She throws me a rope when the waves are crashing over my head and I just cannot get a breath.  We spent a lot of time together when I lived in Delaware.

In September 2010 we went on a road trip together, she has been in the long process of writing her first book and needed to do some research.   She asked me to come with, as her travel partner and photographer.  I jumped at the chance.  At that time I had never been away from the Roc for more than a night or two, and I could count those nights on one hand.  We flew down to Florida and then drove back up the coast, stopping where she needed to stop,

eating,

laughing,

talking, and taking lots of pictures.  We had a blast.  We travel well together.  We had so much fun that we decided to try to get away for a long weekend together every year.

It was hard to tell her when we put our townhouse in Delaware on the market last October.  It was even harder to leave her when we actually moved away in June.  She brought us dinner on our last night in town,

and I’ll never forget that she came to see Giancarlo and I off on our very last morning in Delaware.  She helped us load our travel bags and animals into our tiny Celica and she stood on the sidewalk waving goodbye as we drove out of our neighborhood.  I know that she got into her car and cried when we rounded the curve out of sight because I could hardly see through my own tears.  We were both worried that we would lose our connection, but we emailed a lot over the summer, sometimes late at night, catching each other just when we needed to be caught.  We also kept our promise to get together every fall and she flew out to see us in September.

We had a great weekend together, tinged with the grief I was wrestling after my miscarriage, as she arrived days after I lost the baby.  I worried that she didn’t have as much fun as both of us had anticipated, my heartache coloring my mood and affecting both of us by the end of the weekend.  I had wanted to show her a good time, my favorite places, and the beauty to be found in Minnesota.  And I did.  We went to up north, stayed in a hotel, ate out, and I showed her my favorite places on the “north shore.”

We exchanged many lengthy emails after she returned to Delaware.  We strengthened our bond and deepened our friendship with what we were finally able to share, those things that weighed heavy in the air while we were actually together were finally examined.

Christa and I keep in touch regularly, we talk on the phone when we get the chance, we exchange emails and facebook comments.  She recently got an iphone, but I haven’t gotten her to text regularly, yet.

On December 6th I saw that she had posted on facebook about being an elf and I figured she had found the perfect gift for her son and was delighting in that small/big victory.  I was surprised later that day when I received a box and upon turning it over saw her handwriting.  I didn’t put everything together until I opened it, saw what was inside and then read the enclosed document.

“OH MY…WHAT IS THIS?  Well, it’s a Mantle in a box, that’s what it is.  Because I’m guessing you’re not the kind of girl who sits around for hours on end daydreaming about how you can make your fireplace look like it came out of the Holiday Edition of the Pottery Barn catalog, I thought I would take the liberty of doing it for you.  And also because letting your gorgeous mantle go naked for the holidays is just a crime.  In Minnesota, anyway.”

Christa had included a contents list and some instructions including,

“Take the pine cone ornaments and Christmas balls out of the boxes and group them together to make clusters of ornaments (usually in threes.)  DO NOT group the pine cone ornaments with two balls or it will look like this:” 

and she included a little drawing of how offensive that particular grouping would appear complete with the sentiment of, “and that’s just gross” next to it.  I howled with laughter, tears in my eyes at first from her thoughtfulness, and then because of her humor.

The document is a couple pages long, complete with drawings of how the finished mantle may appear,

and also lots of suggestions of what I could do to it in the future, complete with pictures and notes.  Christa has a good eye and lots of good ideas!

She knows me well.  I really wanted to decorate my mantle, I even went to look at some things and left the store empty-handed because I was too overwhelmed by all the choices.  The very morning that box arrived I had planned on stopping at Target to at least get some lights to go across the mantle but when I got to the exit, I kept on driving.

I carried the box into my family room, agreed to let the Roc watch a Scooby-Doo movie, then looked up at my poor attempt to decorate my mantle.

Then I got to work, following Christa’s directions, shoving the dog away from the garland again and again, and finally I was done.  It’s probably not as good as Christa would do, but I am pretty happy with it,

and it’s so pretty at night.

So thank you Christa.  Thank you for being such a good friend to me.  Thank you for making me laugh, for cheering me on, for throwing me a rope when I need one, for always being there. I’ve never had a friendship like ours and I feel so incredibly lucky.

Thank you for making my mantle pretty.

Love you.

Breakfast of Champions

Everyday I cringe as I pack the Roc’s lunch.  He won’t eat a sandwich of any kind, not meat, not cheese, no nut spreads, not even nutella!  I tried leftovers in thermos containers, but those came back untouched.  So I send him in with yogurt, cheese, juice, fruit, cereal, and a cookie.  Every day.  And he eats it all.  Every day.

I wince because it doesn’t seem like enough food for my boy who EATS.  I worry that he is still hungry when he leaves the cafeteria.  Hunger = irritability, frustration, ramping behaviors, and eventual meltdowns.  I push those worries aside because he is holding himself together all day long at school.

Also, he eats a good breakfast.  He gets on the van with a full tank, though just like his lunches, breakfast for the Roc isn’t typical.

Examples:

Monday:  3 bean chili with cheddar cheese (think pinto beans, black beans, kidney beans, zucchini, carrots, red pepper, tomatoes, corn)

Tuesday:  chicken burrito (chicken, cheese, re-fried beans & salsa)

Wednesday:  Shepards Pie (potato, beef, carrots, peas)

Thursday: Cincinnati chili with spaghetti and cheddar cheese

Definitely not what I crave in the morning!  But it works for him and that’s all that matters.

I just hope he never pukes on the van.

Basketball

I’ve been a little nervous lately, actually I’ve been nervous ever since I clicked submit on the online registration for the local community education basketball program a few weeks ago.  Whenever I think of what’s to come, my stomach gets cold and tight.

Did I make a mistake?

Is he going to flip out?

Is this too much too fast?

What if he hates it?

I have a deep fear of him having horrible childhood memories.  Scars from things I made him try or attend.

But then I remember – he did baseball, and he liked it.  He tried soccer, and even though he didn’t like it as much as baseball, he kept at it.

Then I remember those were programs for children with special needs, this will not be, and my stomach clenches again.

This will be typical children with typical families.  Parents that know nothing about how different some children can be, and how to talk to their own children about accepting differences.

Some parents will not judge, but I know that many will.  It’s so easy to judge what you don’t know, what looks like bad parenting, or bratty behavior.

Some will have patience, many will not.

Some will be compassionate, many will not.

Some parents are letting their kids try it out, maybe they signed them up, or maybe the kids asked to join.

The kids are in 1st grade, it’s not competitive sports…yet.  I know that some parents will competitive, but I hope most are not.  It should be about fun at this age, I know that the fun mentality is fading fast from the “my kid is so advanced” generation.  (I used to hate those words stringed together in that order, oh wait, I still do.)

It’s when I think of these things that my stomach clenches and I worry about the Roc.  How he will handle it all.

But then I remember that on the morning of the last day to sign up for the cheaper price, (hey, $5 is $5) while the Roc was taking his daily morning bath (don’t eff with morning or bedtime routines around here people, sacred ground) I sat down in the bathroom to talk to him.  I needed to know what he really thought before he left for school.  I had waited to the last moment to ask the question for real, after bouncing it off my autism mama friends and after asking myself many times if I should even make this attempt.  Rather, if I should have the Roc make this attempt.

I told him that there would be practices once a week and a game on the weekend.  That the practices would be in a large gymnasium with lots of kids, all bouncing basketballs, shooting, tossing to each other, and shouting.  The parents would be there too, watching, possibly clapping and cheering.  That it would be loud, with lots of movement, and I kind of choked saying the words, waiting for him to speak.  I said the games would be similar to the practices but there would definitely be lots of clapping and cheering, but it would be possible for him to sit on the bench and not play.  To watch if that was what worked for him.

He stared at me over the bubbles.  I wondered what was going to come out, if he was going to answer my question, or start up his monologue about waterfalls and birthday parties.  After a long pause he spoke.

“Well, I go to gym class and all the kids bounce balls and run and yell and I got used to that….so I think I will get used to basketball too,” the Roc said to me.

I leaned back, feeling that familiar prickling behind my eyes, and found that I couldn’t speak.

Then he said, “I think I would like practice, but could I maybe sit out during the games? And don’t sit far away or up high on the bleachers okay? I want to be able to see you.”

“Sounds good Roc, I’m going to sign you up today okay?” I told him.

“Okay Mommy,” the Roc said before launching into his favorite questions about the water slide we got for his birthday party this summer.

Later that morning, after he got on the van, I completed the registration online, filled in my credit card information, and clicked submit.  Then I wrote to my mama friends, a “holy shit, I just signed the Roc up for basketball, my heart is racing,” kind of thing.  I got the love I needed and the advice to ease him into it and I remembered my friend Carrie’s wise words that success looks different for our kids and that’s okay.  It’s okay if he doesn’t want to play, if we spend a lot of time watching.  Whatever works for him, if he can be a part of it, because he wants to, that’s success.

Now, whenever I feel that cold tightness taking hold, causing me to doubt myself and the Roc, I think of this conversation.  I gave him a choice and this is what he chose.  He wants to try, and I need to give him lots of credit for that.  It may not work out, I am preparing myself for that, but I am also preparing myself for him to be successful, however that looks for him.  In the words of my mama friend Jess,

“We prepped as though we knew it would work, because we knew that it *could*.”

All I know for sure right now is the Roc loves basketball and he wants to try.

We’ve prepped.

Tonight we go to pick up his schedule, roster and basketball jersey.

The kickoff is on Saturday.

A big “too be continued….”

 

Good News Call

So often we hear the negative about our kids.  We hear about all they cannot do after their evaluations, how far behind they are at conferences, what they have to work on during IEP meetings.  It’s hard to hear these things, to read the reports full of these details, to craft the goals we hope will help them shorten the gap.  Our hearts are pricked to read and hear our children dismantled in this way, because they are so much more than the sum of the things they need to work on.  So much more.

To combat all the negative we celebrate the positive.  No matter how small, every step of progress is noticed.  We know our children better than anyone, and we know where they started, we know the hours they (and we) have put into the skills they have acquired.  And we often deal with the fall out of how hard they have to work every single day.

The Roc works hard at school.  He works hard to keep himself together all day, to be in the classroom and be a part of it.  He works hard to be around his peers, to be socially appropriate.  He works hard against his anxiety and the sensory onslaught that is the elementary school.  And he does.  He is mainstreamed in a first grade classroom, with para support, most of the day.  He goes to the “resource room” for the second half of reading and math, to get more direct instruction.  There is friendship group once a week and a social skills group once a week.  It’s not easy for him.  But he’s doing it.

The academics are coming along.  Math is clicking for him, his writing is clearer, but he is behind in reading.  We work everyday on his sight words, to keep the kindergarten words and add the new 1st grade words every week.  When we work on his spelling words I hear him sounding them out, I know the information is there.  At conferences we were told he is at “beginning kindergarten” in terms of his reading ability.  I swallowed those bulging words and  tried hard to lift my sinking stomach, a whole year behind, a little voice whispered in my ear.

Last week as I was leaving the school after volunteering the Roc’s special ed teacher, Ms. G, and I saw each other in the hallway.  We stopped and chatted a bit and she very excitedly described how the Roc read a couple little sight words books to her that morning.  Books that he hadn’t read in a while, but could read at one time.  At first he said he couldn’t do it, and after her prompt he started to read.  He even self corrected when he made a mistake, and then went back and reread the sentence.  I grinned when I told her that I started to write her an email that morning, because he finally started to read those little books to me the night before.  She has been sending a couple home every few weeks as he mastered them, but he would never read them to me, until now.

It was so nice to see her, to connect for a few minutes face to face, and to hear her joy at his progress.  I love that she sees the positive and that she shares it with me.

Then on Friday when I got home from running an errand there was a message from Ms. G.  I will admit to my heart kicking when I first heard her voice, one of the last times she called me it was to warn me that the Roc had not had a good afternoon.  But it was a “good news call,” and I don’t know if all teachers do this periodically or if it is something just she does, either way, it’s wonderful to hear the positive and to know that she is celebrating it just as much as we do.

Her message:

Hi there, it’s Ms. G calling with a good news phone call for the Roc.  He has done an awesome job this morning.  He did his sight word test with me for his first grade sight words from Mrs. H and got 36 out of 55 and breezed through them which was so amazing to see.  Then, he is bringing 3 books home today.  He even went and read one to Mr. H (assistant Principal) to show off which was a huge step because he was super nervous to do it.  He got down there, walked in and he read the book!  When we walked out he said “that was really fun, can I do it again?”  So that was pretty awesome.

I just wanted to call and tell you he was doing a great job and to have a great weekend!

All of that is pretty awesome.

But what is really awesome is that she shared it with us.  That she took the time to call me and let me know that he willingly read his sight words, and that she had him go down and read a book to the assistant Principal!   What a confidence booster for him!  What a great idea!

When I asked the Roc about it he grinned and said, ” I did!  I read a book to Mr. H even though I was nervous!  I did a good job!”

It makes me smile every time I think about it.  I’m happy to send him off to school knowing that he is being seen for more than just the deficits.  The progress is also celebrated.  That means more to me than words can describe.

Life + A Fall Recap

“I haven’t done anything with my blog in a long time,” I said to my sister last night.

“I KNOW!  I keep checking and it’s still on effing HALLOWEEN!” she responded, quite passionately.  I had no idea anyone was still reading it.  I rarely check the stat counter anymore.

So much has happened, yet it’s really the same old, same old stuff.  Joy and heartache, progress and the ever present gap.  Leaps forward, backward, and sideways, all in the same day, and sometimes in the same breath.

We had fall conferences, we had an IEP meeting, we signed off on evaluations to make sure the Roc meets MN criteria for autism, we have another meeting scheduled to go over the results.  I feel a sense of peace for the placement he is in right now, and my heart constricts when I think of having to figure this all out again next year.  I am amazed by the work that comes home and feel the gap widening between him and his peers.  There is just so much to teach, and so much of it isn’t just the academics.  But he’s learning!  He started to haltingly read small sight words books to me and the pride in his eyes is so bright it brought tears to mine.  We work every day, and there isn’t enough time in the afternoons/evenings to get to it all.  There has to be some balance, he needs time to be a kid.  I feel the weight of responsibility riding high on my shoulders, I am such a huge piece of the school puzzle.  Some days I feel strong enough to carry it, and just as often the pressure makes me feel as if I am drowning.

We had Thanksgiving at my sister’s house and it was good to be with family this year.  We arrived right as the food was being served up, a little later than we should have perhaps, but perfect timing for the Roc who has a hard time waiting for things to get started and was already anxious about the fact that my sister’s in-laws would be there (never mind that he spent time at their cabin this summer!)  After dinner the kids did a feather hunt – the big kids hid the brightly colored feathers all over the yard and the Roc and Matthew had to run around find them all.  Later we went on a “nighttime walk” which the Roc completely enjoyed.

After years of not being here, I was really glad to participate in the annual tradition of baking cookies all day on “black Friday” instead of getting maced at Walmart by people racing to buy cheap towels.  The Roc made it the whole day, helping make cookies, going on more feather hunts, and playing outside.  He wouldn’t have made it the whole day 2 years ago.  We would have had to go home, it helps to remind myself of these facts.

The Roc is even keeled one day, unglued the next.  He asks me questions he knows the answers to, repeatedly, and I balance my gratefulness for the asking with the need to teach him to “only ask these questions once.”  The Roc asks questions I never saw coming, and he comments on things I never knew he was thinking about.  Again I balance my gratefulness for the asking with the fear of questions to come, and whether I’ll do a good enough job to answer them.  Have I so far?  I am still thinking about talking to him about autism, but is he ready?  Or did I wait too long?  Should I have done this already?  I am paralyzed and am waiting for the right moment, I do not think it’s a conversation I can schedule.

The Roc plays more than he ever has, and he adores his cousin Matthew.  I often hear, “Matthew is my favorite cousin,” from the Roc.  The first thing he asks me every day when he gets home from school, “Can Matthew come over?”  I often have to remind him not to boss, that he needs to take turns doing what Matthew wants to do, and that we must end the day nicely – he never wants Matthew to leave.  We have days where Matthew has to go home not long after he gets here because the Roc threw the fit of all fits, and then the polar opposite days like yesterday where they made up a game with stuffed animals and when it was time for Matthew to go home because it was getting dark the Roc said goodbye nicely.  There is so much to teach the Roc about social skills, I am overwhelmed sometimes listening to him converse with Matthew, and then doubly overwhelmed when I think about the fact that he is conversing–with a peer!  It’s been so good for him, in so many ways to be able to see his cousin so frequently.  I am so glad we bought this house, one street up from my sister and her family.  Now if I could only get the Roc to relax his stance about talking to Matthew at school.  They even have recess together and the Roc won’t play with him,  he tells me, “I’m too anxious on the playground to talk to him,” and my heart hurts and I simultaneously rejoice that he can tell me that he feels anxious, that he can articulate himself in this way.

Around and around, up and down.

We are plugging along at this life.

New location, same stuff.

Joy, heartache, pain, progress.

Life.

 

Halloween!

Halloween.

It’s come and gone, and now there is a bucket full of temptation sitting on the top of my fridge.  The Roc was super excited about Halloween in Minnesota, his first time trick-or-treating in this neighborhood, and more importantly, with his cousin Matthew.

It’s funny how some things that are so different, a complete departure from what he has done for 3 years in a row, he anticipates with glee; and then the events I do no think will register on the anxiety scale completely throw him off.

When we lived in Delaware we carved our pumpkins the weekend before Halloween, let me restate that, GC carved our pumpkins while the Roc watched and I took pictures.  This year, my sister invited us over to carve pumpkins on Saturday.  I told the Roc, but didn’t think much of it, figuring he would be super excited to go down to my sister’s house.  When we pulled into my sisters driveway, (yes, one street away, I wasn’t carrying 6 pumpkins on foot (and YES, we had SIX pumpkins)) the Roc told me he was anxious.  He didn’t want to get out of the van, he looked worried and scared.

“Baby, you’ve been here before, we’re going to go and find your cousins,” I told him as I walked up to the front door looking for my sister’s family.

He stayed put on the driveway.  I found everyone on the patio, plunked my pumpkins down and went to grab a couple more.

“Come on Roc!  Everyone is on the patio.  Let’s go carve our pumpkins!”  I tried to move him along.

“I’m too anxious,” he told me.

I carried the remaining pumpkins to the backyard and got started.  Eventually the Roc came to the back with GC, but he still wasn’t happy.  I was cutting the top off my pumpkin and I exhaled, realizing that he needed some validation.  That even though I didn’t plan for him to react this way, he was, and I needed to say something to him, to help him.  I could feel his unease and sense his internal pressure was building.

“I understand, this is different from what we did in Delaware right?” I asked him.  ”Usually it was just Mommy and Daddy and you, and we would carve the pumpkins at our table, right?”

“This is different!” he exclaimed.

“I understand, but we can do things differently.  It’s okay to do things differently.  And this will be fun!  We get to see what your cousins carve into their pumpkins.” I tried to encourage him.  Inside I was shocked at myself for being shocked that he was anxious at my sister’s house.  I know better.

After I scooped a pumpkin I handed it over to GC.  It’s his punishment for being so creative and handy with a knife.  I convinced the Roc watched GC carve.

My sister’s kids were busy with their pumpkins.

I kept GC busy carving for a long time.  We even got him to try to make an “angry bird” (but we forgot to poke some holes, or leave the lid off and the darn thing didn’t stay lit on Halloween, but it did look really cool!) and the NJ Devils pumpkin he does every year.  He may act like he doesn’t want to carve, but look, he’s smiling!

The Roc wanted to play more than carve, and he got my mom to chase him around the yard for awhile.

After dinner we lit up the pumpkins.

The Roc was super excited about Halloween when he got home from school.  The first trick-or-treaters came before it was even dark, and the Roc cut his dinner short to get into his costume.

GC took him around the neighborhood with my BIL, Matthew, and a few other dads and kids from my sister’s street.  I sat in the circle with some of the neighbors, by a fire, and handed out candy (totally the way to do it!)  When they came back 1.5 hours later the Roc was all smiles, he had only worn the mask for a few houses.  GC said it wasn’t long after they had started that the Roc fell flat on his face and he was sure that the evening was over, that he was going to meltdown.  But the Roc choked back his anger and embarrassment and kept going.  HUGE!  He ran with the other kids and this year he didn’t try to go into every house.

The whole evening was a success.

(A funny thing – he could really care less about the candy.  The bucket is on top of the fridge and he doesn’t ask for any of it.  He wants to keep eating the same desserts he always does.  Yay for that!)