so…um…yeah.

Monday I wrote this grand post about changing how I view Howie’s days at school.  Focusing on the academics.  The positives.  Not running right to the behavior sheet.  And not using that to determine the success of the day.

Yeah.

I hit publish on that post on Monday and Howie was home 15 minutes later.  And I tried.  I really did.  I waited to check his log sheet, going first to the work.  I asked how his day was and got the standard answer of “fine”.

And then I went to the log sheet.

I get a record of how he did on his behavior plan, separated out by each hour of the six hour day.  Only once that day did he “earn”.

The other remarks were “vocal outbursts at work requests”.  “Hit another child”. “Scratched me.” (from his aide).

When I ask him about it, he shouts “I don’t remember!” and runs away.

Yup.  Right back again.

So there’s my confession.  I couldn’t even last a day without using his behavior as a measurement of success.

I had our regularly scheduled monthly meeting with his teaching team and BCBA yesterday.

They’ve taken weeks (months) of data.  We’re in crisis mode now.

His triggers are unpredictable.  All steps to keep him in the inclusion classroom full time have not worked.  His sensory toolbox is still being refined and he’s just learning to use it.

But it’s not quick enough for them.  They can’t identify what will cause the outbursts or aggressions before they happen, so they can’t help prevent it or even teach him how to prevent it.

And sure, we can look back and say “Oh well, he was getting sick so that’s why he was off that day.” Or “Daylight Savings Time throws him off every year.” Or whatever we define as the trigger after the fact.

But it doesn’t – and can’t – excuse the violent and aggressive behavior.

If we can be honest, we’ve been in this crisis mode since October.

It’s March.  Eight months into the school year.  And all the tweaking and fine tuning hasn’t worked.

Socially and behaviorally, he’s made no progress on any of his IEP goals.  None.  He’s actually regressed.

So here we have a kid who academically is shining.  But as I wrote on Monday, he just can’t be in the classroom to do it.  The large group time is just too much for him.

Too many distractions?  Sensory overload? Not enough good peer models?  Something else?

I told his team that I’ve basically put this year behind us.  That I hoped we’d start summer school and first grade fresh with a new plan and new goals.

The proposal now is pulling him out of inclusion for some portion of the day for direct teaching of behavior modification. “Compliance training“.

I told a friend those were my two least favorite words in the English language now.  Like, that’s the best name they could call it? Couldn’t we call it something more positive?

Maybe “Say Yes To The Dress?”

The team told us to think about it.  That we would need to sign off on the pull out of the inclusion class for the work.

I told them that he was already being pulled out of the classroom because he can’t be there.  Right now, it’s in response to inappropriate or aggressive behavior.  So if he can’t be there, why not have it be for a positive teaching reason? And perhaps the inclusion model isn’t right for him right now.

But that’s the hardest truth to swallow.  That’s the part that gets me.  My kid can’t be in the classroom.  He needs to be taught how to be in a classroom with 20 other kids.

The behavior that comes so naturally to other children is a constant struggle for Howie. The other kids need the academic instruction, my kid needs the behavior instruction. The social/behavioral goals are part of his overall educational success.

So while I’d really like to be that mom from Monday, the one that praises and focuses on the academic successes and accentuates the positives?

I can’t.  I just can’t.

The truth is much more complicated.

And if we’re being honest, I really really hate that.

Honesty is such a lonely word.
Everyone is so untrue.
Honesty is hardly ever heard.
And mostly what I need from you. ” – Honesty by Billy Joel

(note: I was tagged and asked to contribute to an IEP meme on Solodialgue – a way of sharing our experiences and knowledge of the process.  She’s an amazing writer and our kids are a lot alike, so I couldn’t say no. Here’s my contribution.)

I was out for drinks the other night with some friends.  And as much as we tried to talk about ourselves, the conversation floated back around to our kids.

I had just had our annual IEP meeting for Howie.  We were also going through his 3 year evaluation as well.

I told my friends about the meeting and about how I thought it went really well.  The discussion around the table was about how to make things work for Howie in school in a truly individualized way.  The actual definition of an Individualized Education Plan.  I went through the ins and outs of our new plan, why we made the changes we did, and how I feel like we’re all in a good position now to help Howie move forward.

You made that happen.” my friend said.  I was a little startled, not quite knowing what she meant.

“It’s because you came to the table in a respectful and smart way.  You advocated for Howie and you knew what you were talking about.  They all understood that around the table.”

It was quite a compliment.  One that I will readily accept.

I need to be a major player on the IEP team to make sure my kid gets everything he needs to help him succeed in school.

**********

I could share the details of my son’s IEP here, but since every child is different and has different needs, I thought I’d go a different direction.

The IEP meeting itself can cause stress and anxiety for weeks leading up to the day, and the meeting itself can be quite daunting.  It’s usually the parent(s) and then any number of therapists, educators, and administrators sitting around a big table.  You’re discussing the most intimate and detailed issues about your child.  It can get emotional and painful quickly – on both sides.

I have worked hard to get to a place of mutual respect with all players on my son’s’ team.  So I thought I’d share how I’ve been able to make our IEP meetings successful so far.

I’m not talking bringing cookies and coffee to the meeting.

I’m talking work.  For me.

I have to do my homework: The IEP meeting can get overwhelming quickly as terms and jargon get thrown around the table.  Before our first meeting for my son three years ago, I asked a friend to send me a copy of her son’s IEP.  Not so I could copy it, but so I could learn the language used.  I understood that a flowchart would be used to determine my son’s eligibility for special education programs based on his autism diagnosis.  I became familiar with the different parts of the “grid” and delivery service methods.  I went to sites like Wrightslaw to understand the process.  And each IEP meeting, I make sure I know what each goal means and how he’s been progressing on them.  So that way, when our OT says “I’m going to move myself from the ‘C’ part of the grid to the ‘A’ part of the grid” I know that means that Howie no longer needs direct OT service work, but that she’s adding herself as a weekly consult to make sure his sensory needs are being met in the classroom every day.  Or when the BCBA says “We’re going to start taking more ABC data on Howie to better track his behavior issues” I know that means Antecedent/Behavior/Consequence data. That way, we’re not taking time to go over the details of the words in the meeting so we can have more time to have a philosophical discussion of what that means for my son. I also make sure I have read every report they have sent to us and have copies of the reports with me at the meeting.  I need to be as prepared as the other people at the table.

This also means filling out any and all paperwork that they send me.  For Howie’s evaluation, I had to complete a number of speech/language home assessments and a new sensory profile.  I did it the day I got them.  If I didn’t, I’m pretty sure I would have lost them in the sea of clutter in my house.  The therapists appreciated how quickly I got them back, because it makes their job easier too.  In our meeting, our special education director complimented me on returning the IEP meeting acceptance form and thanked me for answering the questions.  He said “Most parents just check off that they will be here.  They don’t take the time to answer the long term/short term goals questions, or write down what their child’s strengths and weaknesses are.  You help us by answering those questions.”  I can’t imagine NOT answering them.

I Know The Players: The names and titles of the people sitting around the table can be daunting : physical therapist, occupational therapist, school psychologist, special education director, etc.  But they are also regular people who play an important role in my son’s daily school life.  I need to know who they are and what they do before that meeting.  Howie’s OT has been working with him for three years now, and over those years I’ve gotten to know her well and she knows me.  So when she tells me in the above example that we’re dropping OT direct service, she looks right at me and says “We’ve been talking about this for a year.  He has met all his goals in amazing fashion” I know she’s telling me the truth and I trust her judgment.  Our speech/language pathologist is the same way.  She lives in my neighborhood and I wave when she goes by on her daily walks in the summer.  We stop and chat when we see each other.  Our special education director has a son who was in Howie’s preschool.  I send thank you emails. I drop in to school and say hello.  We have monthly meetings with his classroom teacher and BCBA to check in on how things are going.  I know them, and they know me.  They know my other two boys.  We aren’t strangers.  So when I walk in that room, there are no surprises and no unfamiliar faces.

Because we know each other, they know I will be as honest with them as they are with me.  I will give them the information they need to help my kids.  I made sure they had a copy of Howie’s recommendations letter from his developmental pediatrician before the meeting so they could read her suggestions and ideas.  I have been upfront about the fact that we have home behavior services now for Howie, and have even had his consulting therapist go into school to observe him there.  I’m not holding back, and I expect the same from them.

Because of this trust, they know I’m actually looking for information to help with Howie at home when I ask for weekly reports on his OT and social speech sessions and daily logs from his aides.  It’s not that I don’t trust that it’s happening, it’s that I want to be able to continue his work at home in a way that he understands.

I Know My Kid:  I am fully aware of my son’s strengths and challenges.  I’m not under any false impressions about his behavior, nor am I ignoring the progress that he has made.  So again, I know it’s okay to drop direct OT service from his IEP this year.  I know he has met his goals because I see him write, color, cut, fasten and zip every day.  I also know that his sensory challenges are not managed appropriately by him in school or home.  So I would never agree to dropping access to the OT room or a weekly consult to train staff to implement his sensory diet.  I’m also in full agreement that he needs weekly social skills session taught directly by the speech/language pathologist.  And I would never – at this point – agree to giving up his one-to-one aide, nor would I give up his extended year summer program.  And they know that.  It’s not about picking my battles here, it’s about knowing what my son needs.  So I’m not going to argue for services that aren’t appropriate.  But I will push for any and every service he needs for success at school.

I’ve learned to use direct and unemotional language in the meetings, but never letting them forget that we’re talking about an amazing 5 year old boy.  Our goals as a team are the same – to help my son succeed.  We’re all on the same page.

It’s still personal.  It’s still about my son.

My son’s team knows this and it leads us to creating a respectful discussion around the table.  We may disagree but we when we do it’s about the issues and not about personalities.

I have had to do a lot of prep work to get us to this place.  But it has yet to feel like they are out to “get us”.

**********

I’m not naive enough to think that this is some magic formula for the perfect IEP meeting.  I know that my experience, unfortunately, is not the norm.  I have friends who have done everything right and still end up fighting to get their kids even the most basic of services.  Money, personalities, and a million other factors can make IEP meetings miserable for all sides.

For me, the key has been realizing that I am equally as important as all the other people at that table – maybe even more so.  That is my child we are talking about.  His successes, his failures.  When he succeeds, we’ve done our job.  When he doesn’t, it’s not because of something he did.  It’s because of something we as a team didn’t do to help him.  I will make sure that his support team loves him and respects him as much as I do.

Our team is now heavily invested in helping my son reach his potential.  They want to see him smile every day.

That is our number one IEP goal.

Life is very short, and there’s no time
For fussing and fighting, my friend.
I have always thought that it’s a crime,
So I will ask you once again.

Try to see it my way,
Only time will tell if I am right or I am wrong.
While you see it your way
There’s a chance that we might fall apart before too long.

We can work it out,
We can work it out.” – We Can Work It Out by The Beatles

Every special needs parent knows that there are times when you have to step in and advocate for your child.

Sometimes, it’s at a parent/teacher conference.  Sometimes it’s an IEP meeting.  Sometimes it’s on the sidelines at a sporting event.

Before our kids have a voice or can advocate for themselves, we have to be the ones to speak up and help others learn how to help our children.

I did just that today.

**********

I had asked for this meeting with Howie’s teacher and his two aides.  It wasn’t a demand but more of a “I need to come in.”  It was becoming clear that they were having trouble understanding Howie’s sensory processing disorder and how it manifests itself at school.  He was having more outbursts, more meltdowns and new physical aggressions – things we hadn’t seen in over two years.  I needed to go in and help them understand my child.

I was nervous.  I’ve never done anything like this before.  They “knew” autism, but I had to explain SPD in a way that they would get him.

I read MOM-NOS’ post “A Hair-dryer Kid in a Toaster-brained World” three times while working on my presentation.  It’s my go-to post always when trying to explain Howie’s brain.  I knew if I could explain Howie’s SPD half as well as MOM-NOS explained autism, I would be in good shape.

I searched my brain for an analogy like hers.  And it finally came to me.

**********

I met with the special education teacher and the two aides on a cold rainy morning.  The four of sat in a small office, and I handed them my powerpoint presentation.

“My goal here,” I said, “is to help you understand Howie and how his body works, so that you can help him understand how his body works.  Especially in the classroom.”

My presentation was titled: “All About Me and My SPD”.

I gave them a quick definition of what SPD is: a neurological disorder that causes a virtual traffic jam in the brain.  I explained how it’s like autism in that way, but SPD is more about how the brain interprets the information from our senses.  When it gets mixed up, it can cause a child to behave inappropriately.

I talked about sensory seekers and avoiders.  I asked them to think about their responses in certain places.  Do you like crowds?  Heavy blankets for sleeping at night? Do you get nervous around lots of noises?  Are you easily overwhelmed?  I shared my fear of stores like Costco and Wal-Mart – how just being in those places made me so uncomfortable that I choose not to shop there.

I told them that Howie was both a seeker and an avoider.  That we describe him as “being uncomfortable in his own skin”. And his aide gasped a little.

I made sure they knew that Howie has had these issues since birth.  How I knew from Day 2 in the hospital that he was different because of his non-stop crying.  That he wouldn’t sleep without touching someone.  Stage 3 baby foods made him gag.  He cried at loud noises and had no sense of space.  He asked for hugs all the time – not out of love but out of desperation.  He couldn’t sit still without moving and would run laps inside our house for hours.  I told them he didn’t sleep through the night until he was four.

And again, they gasped a little.

We talked about his duel diagnosis of sensory processing disorder and autism spectrum disorder and how they work hand in hand.  If you understand why Howie feels like he does, then you can understand why he behaves like he does.  And I reminded them that we’ve worked with several occupational therapists to get to fine tune his therapy.  This was not stuff that we made up.

We discussed the eight senses – sight, smell, taste, touch, hearing, vestibular, proprioceptive and the introceptive sense.  I explained what each one was and Howie’s reaction to it all.  We talked about that he never gets dizzy, how eating is hard for him, and how he drinks juice constantly to feel “full”.

And then, it was time to help them help him.

**********

I called the slide “What Does Howie Need for Success in School?”

Think about how you interact with your car
–Before going on a trip, you fill up the tank with gas, check the oil, make sure everything you need is in the car
–Along the way, you fill up the tank as needed. You are proactive in making sure it doesn’t run out of gas
.–You monitor the warning lights but rely on the car’s computer to alert you when things are awry.
–You enjoy the ride but are always alert for a detour or a change in course
–You respect the path and know that it’s a journey, not a quick trip to your destination.

“We know Howie’s favorite thing is Hot Wheels Cars, right?” I said.  “So let’s think of him like a car.”

He needs to fill that tank.

–The mandatory tune-up in the classroom helps him fill his sensory tank for morning work
–For the rest of the day, sensory breaks should be “as needed” and not at set times-If he doesn’t need the break at that moment, he will protest.  It will “overfill” his tank and not help him.
-We need to teach him to self-regulate and advocate for when he doesn’t feel “right”.  He needs to be able to say “I need a break” and get one, even if it’s not at the designated time.  If he’s told to wait, he cannot focus on anything but how uncomfortable his body feels.  He will fidget, loudly protest, or not be able to sit.  You will see an increase in non-compliance.
-As he gets older, he will get better at figuring out appropriate self-regulation in the classroom. But right now, he needs help.  It may be simple as a something in his hands, or a little squeeze, or some heavy lifting in the corner.  It may mean a walk outside, through the halls, or 100 jumps on the trampoline
.-You will learn his “warning lights” – his body moves quickly, or his voice gets agitated, or he starts in on uncontrolled nonsense talk.  These are his “stims”.  If spotted quickly, they can be diffused and redirected.  If ignored, they will escalate quickly to more challenging behavior.  His “engine” will rev up quickly.  He’s familiar with the “How Does Your Engine Run” program.  Using visuals help him understand where his body is at the moment, and helps divert his attention.
-If we listen to his internal “computer”, he will learn how to take care of himself more quickly and spend more time in the classroom with his peers.  His greatest asset is his language.  He is his best advocate.  If he feels like he’s heard, he can also listen and be reasoned with.  If he is feeling challenged, he will not back down.  There’s detective work to determine if he’s trying to get out of doing something or if he’s out of sorts.  He’s not hard to read.  Just listen to his words and body.

He needs to fill the tank without being removed from the classroom as much as possible

–Whenever he can, he needs those sensory breaks to be on the spot and not removed from his peers.  He knows that he’s missing things, even if they seem to come at “undetectable” intervals.  A sensory area in the classroom or at his table or cubby will help him self-regulate because he can reach for these things easily.  These sensory areas can help every kid in the room.
–Positive and immediate reinforcement are the keys to his successes.  The better he feels about himself, the better he’ll sit, the better about himself he’ll feel, etc.
•Enjoy the ride.  Watch for detours
–Howie is an incredibly bright, funny, and sweet kid.  His laugh is infectious.  He will take you on the most magical ride this year.  If you listen and get to know him, he will wow you, impress you, and make you incredibly proud.  In that little body is a big kid waiting to get out.
–Our job as parents and his teachers is to help him show the world the amazing big kid in there.  Our goal always has to be helping Howie with his interfering behaviors so that he can be among his peers.  But our goal also has to be respecting his “quirks” and his differences, and helping him feel proud of the things that make him who he is.
–As his parents, we will always alert you as to the detours that may throw him off course for the day.  A rough night sleep, illness, a fall…these are all things that can throw Howie for a loop during the school day.  They may seem small to us, but they can affect his whole day.  He cannot get “past things” like we can.  A little argument in the morning, or losing his “earn” immediately…those will affect his day.  We are always making slight corrections or changes to our approach with him.  Pre-teachings, warnings…we all need to be three steps ahead of where he will be to help his body and his brain connect.
–He’s a one of a kind kid that doesn’t fit any mold.  A first (and only) edition.  Traditional strict ABA methods will not always work with him.  In many cases, his sensory issues need to be addressed first.  Fill up his tank, and the behavior methods will fall into place.  If he’s left empty or is overflowing, his behavior plan will fall apart.  It’s a long journey with lots of ups and downs.  But he will get there if you let him.
–We are constantly thinking on the fly and out of the box for Howie.  When we do that, he cruises down the road like a finely tuned machine.  Sit back and enjoy the ride.

And finally, I gave suggestions for “filling his tank”:

•In the classroom

–Circle time: something in his hands (tiny car, koosh ball, etc)
–Bean bag chairs for quiet reading time
–“jobs” to help with sensory inputs (stacking chairs, carrying containers of toys, cleaning the board)
–Headphones during work time

•Out of the classroom (when needed)

–Walks down the hall (delivering notes to the office, etc.)
–Jumps on the trampoline
–Walk outside around the building

I concluded the presentation with a list of books and resources for them, with the strong reminder that Tim and I are their best resource.  Use us.  We have been living with this for 5 1/2 years.

**********

We talked for a while about immediate changes to his schedule.  No more mandatory breaks at scheduled times, with the exception of the one first thing in the morning.  They needed to be on demand and honored.  We talked about the need to listen to his words and watch his body.  And we shared that he is already becoming very self-aware – knowing that he needs putty at circle time to help him focus and “jobs” to make him feel proud and accomplished.  His aides said that they are encouraging his classroom teacher to call on him more, that just because he’s not looking her in the eye when she’s teaching, it doesn’t mean he’s not attending.

I stood up to leave and the special education teacher said to me:

“Thank you.  I see your child in a whole new light now.”

**********

There comes that time when we need to take a moment and step in for our children.  No one else will do it for us.  I believe in my son.  I know he will move mountains if he’s given the opportunity to try.  I needed his teachers to see what he could do when he is feeling like Howie.

I know in my heart they will get it.

And if they don’t, I’ll be right back there again leading the way.  I believe in me too.

hand in hand

Try what you need to try,
No one should question why,
Believe in yourself,
Believe in yourself.

Folks may say you’re different,
That you’ve gone and lost your senses,
But the world is yours to walk in,
Go ahead and leap the fences.

And you’ll see,
Believe in yourself
And the world belongs to you and me” – Believe in Yourself from Sesame Street (performed by N’Sync)

It’s the 17th of the month and I’m back with my regularly scheduled post at Hopeful Parents.  I’m still talking about birthdays.  This time, it’s about birthday parties.  And friends.  And birthday parties with friends.

Come read it at:

 

Hopeful Parents
Find Out Who Your Friends Are

Click Here for Find Out Who Your Friends Are

“I was just trying to get him out of the house and he had to have his particular pair of shoes…I just wanted to forget about it all for one damn day.” – Adam Braverman character from the Parenthood episode “Qualities and Difficulties“.

Just wanted to forget about it for one damn day.

Many families who have kids on the spectrum tuned in to this week’s Parenthood episode.  It was previewed as the one where the character Max learns he has Asperger’s.  I chatted with many friends of mine before the show – would we watch?  Could we watch?  I ultimately decided that I had to watch, and armed myself with a bowl of ice cream and thin mints to make it through.

For me, however, the more striking part of the show was not the conversation about Asperger’s.  It was a scene in the middle of show between the dad and Max.

(slight spoiler alert…I won’t go into details of the scene, but if you haven’t watched the show and plan to, you might want to step away for a moment)

In the show, Max’s father Adam was trying to get them out the door for school and Max couldn’t find his shoes.  His dad, sensing Max’s rigidity of schedule, decides they will blow off school and spend the day at the amusement park riding roller coasters.  The day goes fine until something happens and they can’t ride the coaster.  Max has an epic meltdown in the middle of the park, and can’t recover.

Later on, when talking to his wife about the day, he says this line : “I just wanted to forget about it all for one damn day.”

While I had been teary through most of the show to this point, this is when I really started to cry.  This part is what hit home the most for me.  Because he wasn’t saying he wanted his son to forget about it for one day, he was saying that HE wanted to.  The dad.  I knew exactly what he meant.

Because I want that too.  I just want one day – one thing – to be easy.

This hit me like a ton of bricks a few weeks ago when Tim went out of town to buy a car.  It was in Chicago, so he had to fly out there and then drive the 16 hours back with it.  I suggested he take Gerry with him, as a sort of father-son bonding experience.  For the trip, I packed a small backpack for Gerry with a change of clothes, a few books, a camera, and a notebook.  Tim loaded a few Star Wars movies onto his phone.  We told him about the trip about a week ahead of time, and off they went.  Easy.

If that was Howie, we’d have bags of just food that he can eat, his vitamins, his melatonin, his special music, noise-canceling headphones, several changes of clothes, and two or three social stories. And that’s if we could even get him on the plane.  Or into the car.  Or, in this case, taking him was not an option at all.

We can’t just “pack up and go”.  The days that go smoothly – or that seem to go smoothly – are the days where I have carefully scripted every single moment.  We don’t try anything new.  We go to the same restaurants where we know we can eat.  We go to the same amusement park every summer because we know it so well and stay in the same hotel.  We go to the same playspace every year for his birthday party.  We’ve talked about taking a different kind of vacation this summer, but the sheer amount of work involved for all three kids to be happy is paralyzing.  If it was just my son, maybe we’d branch out a little more.  But his meltdowns don’t just affect him, they affect the whole family.

(I’m sure some of you are thinking that maybe if we didn’t micro-manage everything, that he’d learn to adapt to change.  Maybe.  Maybe not.  Experience tells us otherwise.  We’re working on it.  I have to be aware of his abilities at 4 years old.  And what the rest of my family can absorb at this time.)

These thoughts had been swirling around my head when my friend Patty wrote a post called I Just Want Easy.  She wrote that she just wanted one area of her son’s life to go smoothly without any help from her.  I understood so completely.  In my response to her, I wrote “I feel like the only times when things do go smoothly is when I’ve completely hyper-managed the situation.”

And that gets back to the episode of Parenthood.    His wife warned him that he was “going rogue”, that the change in schedule would be really detrimental to Max’s well being.  The dad just wanted a break.  For his son and for himself.  He just wanted them to be father and son, out at an amusement park, having a good time like all the other families.  One family’s “normal” is another family’s “going rogue”.

I felt this again at a kindergarten information meeting.  While all the other parents were worried about their kids remembering their PIN number to buy lunch, I was worried that my son wouldn’t even be able to be in the cafeteria with the noise, smells and people.  Other parents wondered where their bus stop would be.  I wondered if we’d be able to get out of the house on time to meet the special ed van.  One parent was curious how the kids moved from the classroom to gym, art, and the library.  I was curious how my son would get his sensory breaks and OT time.   Other parents think about the big transition from preschool to kindergarten.  I think about every little transition during the day from the moment my son wakes up until he goes to sleep.

Sigh.

“Going rogue”.  Just for one day.   Going off script and just doing something crazy.  Like wearing different shoes.  Or eating a different kind of sandwich.  Or sitting in a different chair.

I knew parenting wasn’t going to be easy.  But, for one day, I’d like it to not be so damn hard.

Take it easy, take it easy
Don’t let the sound of your own wheels
drive you crazy
Lighten up while you still can
don’t even try to understand
Just find a place to make your stand
and take it easy” – Take It Easy by The Eagles

I’m watching my son.

He’s playing on the Wii – the Nickelodeon Wii Fit game the boys got for the holidays.

I’m behind him so he doesn’t know that I have tears in my eyes as I watch him play.

“Look, Mom!”, he says. “I’m running with Pablo from The Backyardigans!”

“That’s very cool.” I say back to him, keeping my voice from shaking.

I’m watching him run in place with the remote in his hand.   When he runs, it makes the Nick Jr. character on the screen run too. This is the only game he’ll play on the Wii.  He says all the other games are too hard.  Truth is, he hasn’t even tried them.  He’s too afraid of losing.

His little body is right in front of the TV.  He’s trying to stay in the same spot as he runs, but he keeps bumping into the toy box in front of him.

“When I run really fast, I make stars come out of Pablo’s butt!”  He laughs hysterically at this.  My two year old is standing right there patiently waiting his turn, and starts laughing too.  Their laughs are infectious and I start to giggle as well.

(As a side note, this same two year old has unlocked every level on this game.  I’m equally depressed, proud and mortified.)

“Now I’m making Dora the Explorer run too!”

He’s making these jerky running motions – legs flailing out to the side.  It reminds me a bit of that Seinfield episode where Elaine dances.

He’s so small.  My middle son.  My four year old in the size 2T pants.  Thin enough to still wear all his same winter clothes from last year.  Small enough to crawl up into my lap and disappear into my arms.  Tiny enough that his two year old brother is wearing pants that only three months ago were in my four year old’s drawers.

I’m still watching as he gets Dora closer to the finish line.  I know why I’m studying him so closely.

On Thursday, we have his IEP meeting.  Our first one since we set his initial plan up last year.  And at this meeting, we’ll be planning for kindergarten.

Kindergarten.

Still nine months away, but the IEP will be written for the full year.  That includes his summer program and start at the elementary school in August.

I’m looking at this little body moving in front of the TV.  Kindergarten.  How can he be ready for kindergarten?

His teachers say he’s ready.  His school OT told me he was ready.  Academically, I know he’s ready.  In fact, there are no academic goals in his IEP.  Only social and behavioral.

And that’s where I worry.  I see this tiny person and I think of him at the school where my older son is now.  I try to visualize him moving from 17 kids and 6 pairs of teacher eyes on him at the preschool to 25 kids and two teachers, plus whatever aides happen to be in the room.  I close my eyes and picture him eating his lunch in the cafeteria, surrounded by 40 other kids and all that sensory overload.  I think of him getting on and off the big yellow bus that I promised he could ride when he turned five.

(Oh God.  The bus.  My just-over-thirty-pound kid on the bus?  Am I going to have to go back on my promise to let him take that bus?)

In his inclusion class at the preschool, no one notices his differences now.  The kids there are at all different academic and social levels.  Every child is equal, every child is a “friend”.  Even though the aides are assigned to a specific child, they are considered teachers in the class and kids like mine don’t stick out.

On Thursday, I have to make sure that continues to happen in kindergarten.  I have to make sure that when another kid sees my son run towards him on the playground, coming at him with those jerky leg movements…I have to make sure he’s protected somehow.

“Mom! Mom!  Moose and Zee gave me a silver medal!”

“That’s awesome, kiddo.” (Moose and Zee give everyone a silver medal unless you get a high score, and then the medal is gold.  It IS feel good Nick Jr. after all). “Do you want to play another game?”

“No, I’m done.”  He hands the remote to his 2 year old brother, who adeptly maneuvers his way through the screen menu to start jumping on a pogo stick with Dora.  (Like I said, depressed/proud/mortified.)

My son climbs into my lap, putting his arms around my neck. “Can I have a big squishy hug that goes on forever?”

My son may be ready for kindergarten.  But is kindergarten ready for him?

——————————————————————————————-

“We’ll never be ready if we keep waiting
For the perfect time to come
Hold me steady, we’ll never be ready
When we don’t know, though we can’t see
Just walk on down this road with me
Hold me steady, we’ll never be ready” – Never Be Ready by Mat Kearney

This post was submitted as part of the S-O-S Research Blog’s Best of the Best, Edition 6 : Anxiety and Stress

Best of The Best on S-O-S Blog

Tonight was Back to School night for my son’s preschool. As I walked up the steps into the big brick building with all the other parents, a weird feeling came over me. A little bit of nerves, a little bit of sadness, plus a little bit of something else that I couldn’t quite place.

Until I remembered. This is where it all started. Exactly one year ago. This was the night when I realized that my son needed help.

Tonight I walked past the classroom he was in last year and glanced in as the parents were taking their seats in the little blue and red chairs arranged on the circle time mat. One year ago, that was me. The “Me” with the lump in my throat. The “Me” that spent every preschool morning arguing and yelling because my son wouldn’t put his shoes on. The “Me” that dragged him out of school kicking and screaming because playground time was over. The “Me” that hadn’t slept more than 3 hours straight in 3 years. The “Me” that just couldn’t figure out what was going on with my kid.

I stopped for a moment in the hallway and closed my eyes. I remember that evening so well. I remember barely listening to his teacher discuss the preschool curriculum because I was still stuck on how terrible his day at school had been. I remember half-listening to her story about how the kids had table time, and that one kid (no name given) kept taking other kids’ name tags off the tables and putting his own there because he wanted to play with the trains and only the trains. I remember knowing in my gut that was Howie, and while the other parents laughed at the anecdote, it made me want to cry.

I remember asking the aides in the classroom how things were going for Howie, and their response was “ask the teacher.” I remember staying late after everyone was gone and talking at length with his teacher about his transition issues, his meltdowns and his difficult behavior in the classroom. She told me that the general accommodations in the classroom weren’t working for Howie anymore. And I remember this incredibly smart and astute teacher telling me – without words – that we needed to get Howie evaluated by a professional.

And I remember crying the “ugly cry” the whole ride home from that Back to School night one year ago, knowing in my heart that she was right but not knowing what it all meant or even what to do next.

That night set in motion a chain of events that would change our family forever. There was the initial appointment with our pediatrician who told us that she didn’t think Howie was on the spectrum, but that he had some “spectrum-like tendencies”. There was the speech/language assessment and the hearing test to rule out anything physical as the reason why Howie couldn’t process two-step directions. There was the piles of paperwork as we tried to get him on every wait list possible for an evaluation, and the call three months later for a appointment with a developmental pediatrician. Then the diagnosis that we expected but still didn’t understand – autism spectrum disorder.

From there, much is a blur. The diagnosis allowed us to reconvene our special education team and develop Howie’s IEP. He was assigned ABA techs to work with him one-on-one in and out of the classroom. He had OT visits, social speech groups, and home visits. The school tailor made a program to fit his needs. I got PECS cards, visual schedules, and daily log sheets of his activities. I learned words like “stimming”, “perseverate”, and “sensory diet”. We gave Howie our undivided attention and divided our attention with our other two boys. We bought books, weighted blankets and therapy equipment. We learned behavior modification techniques and used phrases like “red choices” and “green choices”. We worked closely with the amazing school staff and that incredible teacher to do whatever we could to give Howie a chance at loving school and succeeding in life.

And…

What a difference a year makes.

I walked into his new full day inclusion classroom tonight with a smile on my face. My husband and I had met with his teachers last week and I already knew things were going well. He has two incredible ABA techs that really understand him. They are giving him the choice of starting his day in the OT room to help “get the wiggles out”.

Let me say that again – they are giving HIM the choice. Which means he has reached a point in one year where he is able to verbalize his sensory needs. My little guy, who one year ago couldn’t leave school without a total and complete meltdown, now understands his body enough to know what he needs. My little guy, who one year ago couldn’t lose a game or draw a picture without a complete on-the-floor tantrum, is now running races on the playground and bringing home pictures that he wants hung up in my husband’s office. Of course, this is all with his amazing teachers by his side, cheering him on. But still…after this incredibly hard year, filled with anxiety and confusion and tears and difficult work…maybe we’re finally getting somewhere. Maybe we’re finally understanding our son.

I sat through the entire curriculum presentation tonight feeling – for the first time in a year – that my son could do it. I looked around at the walls and he actually had artwork up for display. Every one of his teachers came up to me and told me how much they enjoyed having him in class. Every one of them told me how amazed they were at how well his was doing and what a difference it was, even from just summer school. One of his techs actually told me that Howie’s “the reason I love my job.”

What a difference a year makes.

And now, maybe there’s hope for kindergarten back to school night next year.

Five hundred twenty-five thousand six hundred minutes
Five hundred twenty-five thousand moments so dear
Five hundred twenty-five thousand six hundred minutes
How do you measure, measure a year?”
-Seasons of Love from RENT

In daylights, in sunsets
In midnights, in cups of coffee
In inches, in miles, in laughter, in strife
In five hundred twenty-five thousand six hundred minutes
How do you measure, a year in the life
?”

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