I’ve read my friend Jess’ post “physical” three times today.

I know that he can’t help it. He was up at 1am. We’re going his favorite place on the planet tomorrow. It’s the first real day of summer vacation. We have no routine.

In isolation I can take it. I can rationally understand the stimming, the crashing into me. When it is just the two of us, I can let it all go. Let him be who he needs to be. Let him scream, squeal, and climb all over me.

But we don’t live in isolation. It affects everyone in the house.  Constant conflicting needs. I have an older kid screaming at me to make him stop. I have a younger kid mimicking it all and infuriating everyone. I have him trying to choke or push on his younger brother’s belly because he needs a squish.

Not malicious. I know he can’t help it. But it hurts everyone else.

So I have yelled. Screamed. Yanked him away from potentially hurting his younger brother and pushing him off of me as he tried to climb into my skin.

And now I have taken away the one thing that is causing the spiral – the trip tomorrow. He has to earn it back. Rationally I know this is wrong. Putting the onus on a kid to reverse his behavior that he cannot control.

But I have four other people in the family. Including me.

They are all mad at me now.

And this all combined makes me feel not only like the worst parent in the world but the worst autism parent in the world. Because I should know better right? Me, the advocate for acceptance and understanding and tolerance. The one who goes into his school and reminds them that he cannot help how he behaves in times of stress/anxiety/uncertainty. I shouldn’t yell because none of them – my whole household full of people somewhere on different parts of the spectrum – cannot help it.

And yet, I did. And now the empty threat of no trip.

He and I sat on the stairs for a while. I held him as he screamed that it was everyone else’s fault.  That they were “blowing up his nerves.”

I brought him up to his room just now. Told him this was his safe space to escape just like the Learning Center at school was his safe place there. This was his place for a break. We brought out his train tracks and I told him to build one while I got a hastily thrown together dinner ready for Gerry before baseball in the 100 degree heat.

I told him we would earn the trip back together.

But I hate this. I really really hate this.

Not my kid. Not autism.

I hate my inability to handle it. I hate their inability to handle it. And I don’t know where to go from here.

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No one said it would be easy

But no one said it’d be this hard

No one said it would be easy

No one thought we’d come this far.” – No One Said It Would Be Easy by Sheryl Crow

E-mail I sent to Howie’s teachers this morning:

Just wanted to give you a heads up with Howie and the upcoming hurricane.  Howie is very sensitive to big changes in barometric pressure.  I am as well  but while it manifests itself in the form of a headache for me for Howie it causes big behavior changes.  His vestibular system gets rocked when the pressure drops.  I know it sounds weird, but we’ve seen it several times, including the last hurricane and that summer when the tornadoes rolled through western MA.  It’s usually about 24-48 hours before the actual weather event comes in.

With this upcoming hurricane, I just read that the pressure will drop incredibly low.  Based on the track of the storm, Sunday is more likely to be Howie’s harder day, but he could start feeling it as soon as today and into Monday.  If you see extra stimming, or he seems out of whack, it’s probably that.

Hopefully we won’t be hit too hard! At least it’s not snow!

These are the types of e-mails I write lately.

The news today is full of reports of a “Frankenstorm” as Hurricane Sandy heads towards the east coast.  Forecasters are calling for an incredible drop in barometric pressure as it hits land sometime late Monday and into Tuesday.

And so I write e-mails about meteorology and storm tracking and sensory processing disorder.

I know that for some people this connection makes no sense.  As in “really?  The weather affects your kid’s behavior? Come on.  Weather changes were something that made old people complain about their aches and pains, but it’s not really real. “

It’s just an excuse for his bad behavior.

I’ve been at this long enough with my kid to tell you.  It’s real.

I get headaches and neck aches right before a storm comes through.  When Hurricane Irene passed near us last summer, it felt like someone was standing on my head.

I can verbalize it.  I can explain what is happening and why.  And people understand it.

My son can’t explain it why all of a sudden he needs to run laps or crash into things or spin in circles and stim.  His reactions to the same trigger look like behavior problems.

It sounds like hooey to someone who doesn’t live it.  But I’ve tracked it.  Storms, moon phase changes, illness…all these things affect my son’s sensory system.

They probably affect all of our sensory systems. But most people have learned to cope with how we’re feeling.  A few extra Tylenol.  Or a nap.

Howie is still learning what makes him more regulated.  He knows what activities make him feel better but he has yet to figure out the trigger or how to do it most “appropriately” for the setting.

I’m not making excuses for how he’s acting. If he’s being unsafe or not able to be in the classroom then he needs to be removed, redirected and helped.  Unacceptable behavior is still unacceptable behavior.

I will however be proactive in helping those around him understand what is a sensory response versus what is a behavior so he doesn’t get into trouble for something he can’t control.

So that maybe he gets an extra sensory break during the day.  Or two visits to the OT room versus just one.  Or just a well trained eye on him looking for signs of discomfort and dysregulation.

And hopefully we can teach him why he’s feeling the way he does so that next time, he has the tools he needs to cope and feel better.

So I send e-mails warning of Hurricane Howie as Hurricane Sandy approaches.

At home, we’re stocking up on Stonyfield yogurts, fruit leather and flameless candles and padding the house with pillows and bean bag chairs for safe crashing.

Getting ready to weather any storm that comes our way.

Got our umbrellas ready

Squalls out on the gulf stream,
Big storms coming soon.
I passed out in my hammock,
God, I slept way past noon.
Stood up and tried to focus,
I hoped I wouldn’t have to look far.
I knew I could use a Bloody Mary,
So I stumbled next door to the bar.” – Trying To Reason With Hurricane Season by Jimmy Buffett

Yes, I know that’s not a real song.

But I had no other way to title this.  It’s an original title for a brand new project of mine.

It’s perhaps the most important thing I’ve done since marrying my husband and starting my incredible family.

My very dear friend and I are opening a parent-led sensory gym.  As a non-profit. For kids just like mine.

We’re calling it “SenseAbility Gym: A Sensory Gym for Sensational Kids“.

But first…the back story.

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This winter, my friend and I took our sons to an open sensory gym in sponsored by the Autism Alliance of Metrowest.  We watched our boys run around and play and smile.  The equipment was familiar to the boys from their OT sessions at school so they knew just how to use it.  As a bonus, my friend and I got to actually talk to one another.  A few weeks later, we attended another sensory open gym, again sponsored by the Autism Alliance, this time at a private OT clinic.  Again, the boys were in heaven.  Jumping into ball pits, climbing through the squeeze machine, swinging around on the therapeutic swings.  And again, we got to talk.  Mostly about how we wished there was something like this open near us all year round.

I wrote about our experience there in my blog.  I talked about how welcoming it was.  How one child kept telling everyone it was a leap year and reciting the other years when a leap year had occurred.  How Howie made a new friend there who loved to spin around in the closed up swing as much as he did.  How happy our kids were.  And that no one there batted an eye if a kid was upset, or melting down, or jumping up and down, or making noises, or making eye contact or not.  It was pure acceptance and love for our kids.

Such a happy face!

My husband Tim read it, saw Howie’s happy face in the pictures, and casually said “You should open a place like that.”

I’m not sure he actually meant it. But I started to cry.  Because I knew we had to open a place like that.

The next night, I went out with a few friends for drinks.  All autism moms. I told them what Tim said.  They said we had to do it.

The next morning, I went for a walk with another friend.  She’s been my friend since our oldest boys were in preschool together. I told her to talk me out of it.  She talked me more into it.  And handed me a book on how to start a non-profit in Massachusetts.

The more we talked to people: parents of kids with special needs, parents of kids without special needs, therapists, teachers, you name it.   Not one person told us it was a bad idea.  In fact, they all said we had to do this.

We met with a business consultant to organize our thoughts.  We relied on people in our community who took their personal time to sit with us and tell us what we needed to do to make this work.  We sent out a survey and wrote a business plan.  We asked my cousin to design our website and our incredible logo. We filed with the state as a nonprofit, with the attorney general’s office as a public charity, and received our 501(c)3 status from the IRS faster than anyone said it would happen.

And so SenseAbility Gym, Incorporated was born.

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So what are we?  What are we trying to do? And why am I writing about this here?

SenseAbility Gym’s mission is to provide a parent-led sensory gym, giving children with special needs a safe, fun, indoor area where they can play and accommodate their sensory needs.  This will be the first of its kind in the Metrowest area of Massachusetts.  We’re modeling our gym after an incredibly successful sensory gym in Brooklyn, NY.

We believe in the fact that all children deserve access to the types of therapeutic equipment used in their schools and their private occupational therapy clinics and we believe that parents need to interact with their children to learn what helps their child “feel better” and have fun. There are four important components to our mission.

  • Community: SenseAbility Gym wants its members to feel welcome, and part of the special needs community.
  • Safe Sensory Play: SenseAbility Gym wants parents of children with special needs to feel there is a safe place to bring their children for fun, exercise and sensory support.
  • Acceptance: SenseAbility Gym will have an environment that recognizes that all special needs children are different and that all learning styles, personalities, and abilities are welcome.
  • Support: SenseAbility Gym will be a place where families of special needs children can go to meet other families who share the same struggles.

Through this blog, I’ve connected with special needs parents all over the country and the world.  The one common statement that most parents say is “I feel so alone.  My child is the only one that has these extra special needs. I have no one to turn to for support.”

My friend and I know how lucky we are to live where we do.  From the moment that we knew Howie needed extra help, we had people to help us.  Our pediatrician referred us to Early Intervention to get help for his sensory issues from an occupational therapist.  When he entered preschool, he was surrounded by a loving, caring, knowledge group of teachers and support staff who knew before we did what Howie needed.  And when he received his autism diagnosis, we were instantly supported by this team here in town to get him the services he needed.  And through that, he made friends.  And I made friends.  And without that…I don’t like to think about it.

We see the gym as a place not only for our kids and kids like ours to accommodate their sensory needs, but also as a place to build their social skills and interact with other children like them.  We see the gym as a place where moms and dads can interact with parents just like them.

As Howie told me the other night: “SenseAbility Gym is a place where kids can learn to get along.”

We see it as an another piece of the support team helping families know they are not alone.

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I’m going to get numerical here for a moment.  We know that as many as one in six children have sensory processing issues. That is from the SPD Foundation. The CDC reports that 5.4 million children between the ages of 4-17 have been diagnosed at some point in their lives with ADHD in 2007 and that number is rising.  We know that 1 in 88 children – 1 in every 54 boys – are diagnosed as on the autism spectrum.

Taking a small seven mile radius around our town – the distance that people in our survey said they would travel for a service like ours – we know we have the potential of connecting with over 400 families who could use the gym.  We’re guessing that people will travel farther and the actual number will be even higher.

That is over four hundred families that could finally connect and say “Me too.”

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And this is where you come in.

I need your help.  As a non-profit public charity, we are completely reliant on donations, grants, and our membership dues to stay open.  None of us are taking a salary.  All the money we raise goes right back into keeping the gym open and running: rent, electricity, equipment, furniture, insurance.

Our gym will be located in Hopedale, MA.  There will be one large open space with equipment like therapy swings, a scooter board ramp, a ball pit, and tunnels, balancing equipment and a squeeze machine.  We’ll have one quiet “sensory” room with crash pads and low lights and calming activities.  And one classroom space for us to hold social skills or life skills classes, or to be used as a sensory-friendly homework room for children who need that to get their work done. Families will be able to purchase memberships to access open gym times with their children.  In addition, we plan to offer sensory based group activities, and have the gym available for private therapists to use with children and their parent.

We would like to have our grand opening in January 2013.  To do that, we need $38,000 to open our doors.  That includes purchase of all the equipment and furniture for the gym.

We are actively pursuing local and national grants to help get us closer to that number.

I need you to tell people about us.  Maybe you know a family who has a child with special needs in our area who could benefit from a membership at the gym.  Maybe it’s your own family.  Maybe you work for a company that is generous with community giving.  Maybe you know children who need to raise money as a community service project and they would like to purchase a piece of equipment.

I need you – my friends and family – to help make this gym a reality.  Not just for my kids or my friend’s kids.

But for mom who told me at our town’s Day In The Park that her daughter needs a place like this.

For the parents sitting in an Early Intervention family group right now wondering where they could find a safe place to meet once their kids turn three.

For the dad who is desperately looking for a way to connect with his autistic son, but can’t afford the play equipment his child needs.

Every dollar donated goes to the gym and those families.

It’s a balancing act

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Last night, we held our first fundraiser in our town.  The above is the speech I gave to the packed house that came for food, wine, chocolate, coffee and conversation.  The room was filled with family and friends and strangers who are now friends.  The most amazing part was it was not all people with special needs children.  It was our community. It was teachers, parents, friends, therapists, and business leaders.  They came because they wanted to support something that will benefit everyone.

We had a “sensory table” manned by my son Gerry and his friend.  She’s an amazing young lady who, like my son, understands how much swings and fidgets and weighted blankets and headphones help their siblings “feel better”.

We raised a lot of money last night.  We’re just under 40% of our goal.

But we still need you.

Clicking HERE takes you right to our PayPal donation page.  We are a 501(c)3 organization and your donation is tax-deductible to the extent permitted by law.  Every dollar goes towards get our doors open.

I want to be able to come here in January and post pictures of our grand opening.  I cannot wait to see the smiling faces on the kids that come through.

And their parents.

On behalf of my friend and every family that this will help, thank you for reading.

To read the news story about our fundraiser, click HERE.

To read more about our plans, click HERE.

To make our dream a reality, click HERE.

(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.

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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”.

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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

Happy Passover!

I’m over at the SPD Blogger Network today for the start of Passover.  And just like the Seder night is different from all other nights, my son is different from all other children.  Come read my plans for a successful and sensory-friendly Passover night.

(and I’m breaking with tradition here by not using a song title.  Somehow the traditional songs of Let My People Go and Dayenu just didn’t have that mass appeal…)

SPD Blogger Network Post

Why Is This Night Different From All Other Nights?

Click HERE to read Why Is This Night Different From All Other Nights?

“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

It’s the 17th of the month and I’m over at Hopeful Parents today playing TV producer.  It’s my pitch for a new reality show.  I think it will be bigger than “Sister Wives”.  Certainly more inspirational than “Toddlers and Tiaras”.

Come check it out:

 

Hopeful Parents
If I Had A Hammer

Click HERE for If I Had A Hammer

In my family, we call it the “weepy gene”.

It could also be called the “cry in public” gene.   Or the “whenever I talk about my family or something emotional, I get teary” gene.  Or the “please don’t ask me to give a toast because I might not get through it” gene.  Several members of my extended family have this gene.

Not me.  I’m not a public crier.

Not that there’s anything wrong with crying, but doing it around other people is just not something I’m comfortable with.  As far as I can remember, there have been only two times in my adult life that I have become so teary that I couldn’t speak – once at my sister’s Bat Mitzvah, and secondly at the night before my brother’s wedding.  I didn’t even cry at my father’s funeral (probably because I let my brother do all the talking that day).

Not that I don’t cry.  I just end up saving it for the ride home alone.  Or in the bathroom.  Or in front of Tim (lucky guy).

So I certainly wasn’t going to cry during an IEP meeting.  Nope, not me.

I pulled out all my tricks during the meeting to keep my emotions in check.  I fiddled with my pen.  I pulled on my sleeves.  I broke eye contact when necessary.  I counted the days in my head until Spring Training starts.

There were two moments when I thought I was in trouble.  The first came after his school OT was finished talking.  She told us that he had met all his fine motor goals.  ALL. HIS. GOALS.  This was a kid who until last month couldn’t color, let alone write his name and all the letters.  He couldn’t hold the pencil right.  Now he’s zippering, buttoning, and drawing recognizable shapes and figures.  As she got up to leave, I thanked her for all her hard work this year, and told her how grateful I was for all she did.

“Oh no”, she said.  “This was ALL Howie.  He wanted to do this.  He wanted to learn.  He did this all on his own.”

With the tears welling up, I started counting the holes in the ceiling.

A few moments later, tears nicely pushed back inside, the team leader asked Howie’s one-on-one aides to talk a little about his progress in the classroom, and what they saw as his strengths and weaknesses.  We shared stories, went back and forth about some ideas, and as they stood up to leave, one of them said to us:

“We just love him.”

And the tears were back.  I whispered a “thank you” as I calculated that there were 51 days until the Red Sox started their season again.

I made it through the rest of the meeting on edge but tear-free.  We ran through his goals for the rest of preschool and the start of kindergarten, talked about his summer program arrangements, and worked through some of the sensory accommodations that might be necessary for kindergarten to be successful.  Right now, at preschool, Howie accesses the OT room almost as soon as he gets into school so that he’s able to function appropriately in the classroom.  This means that he misses some valuable social time with his peers during their center time, as he returns just as morning meeting begins.  The elementary school OT suggested that he might want to come to kindergarten 15 minutes early, so that if he needs the OT room, he goes before the other kids get there and doesn’t feel like he’s not part of the school routine.  Tim thought that maybe there was a way for him to get that sensory input at home before school started, and we agreed to start using some of our home services to work out a better before-school routine.  All of us around the table agreed that the more Howie felt like a full member of the inclusion class, the better it would be for him in the long run.

They all thought that with the right accommodations in place, Howie will be ready for kindergarten next year.

I left the meeting very proud of myself, having kept those tears at bay.

Until we reached the car.

I climbed into the driver’s seat and turned to say goodbye to Tim.

“You know,” Tim said, “if we have to get a dumpster to clear out the basement and put a equipment down there for him, we’ll do that.”

Cue tears.  Cue sobs, actually.  Giant ugly body heaving sobs.

My poor husband, who has seen this so many times before, knew exactly what to say.

“Are you crying because I said I’d finally clean out the basement?”

The joke to make me laugh when all I want to do is cry.  We both knew the cries were a mixture of relief and exhaustion.  Tears of pride because our son had been doing so well, but also tears because of the road still ahead of us.  Tears because we know we had done so much work to get him to be ready for kindergarten next year, but also knowing that there’s so much more we could and should be doing to help him.

I pulled myself together on the ride home, and was able to talk coherently with my friend about the meeting when I got back.  The tears once again were pushed way down under the surface.  Because that’s how I bury the weepy gene.

It’s clear now that my son is ready for kindergarten, and kindergarten will be ready for him.  The question remains, am I the one who isn’t ready?  And where will I go to hide the tears on that first day?

And too much time I’ve been spending
With my heart in my hands
Waiting for time to come and mend it
I can’t cry anymore” – Can’t Cry Anymore by Sheryl Crow

It’s the 17th of the month again (that went by fast!) and I’m writing at Hopeful Parents.  Today’s it’s about the moment when I knew my husband really got it.

Click Here for Parents Are People

Happy Hanukkah!

I have a little dreidel over at Hartley’s Life With 3 Boys today!  I’m talking about celebrating the eight nights of Hanukkah with all of our eight senses.  Yeah, that’s right.  I said EIGHT senses.  Come read and you’ll see what I’m talking about…

plus one!

Click Here for I Have A Little Dreidel

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