Happy Holidays! I’m the Room Parent. I Know You Have Never Heard of My Kid, But……

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Pinterest success for a classroom party.  Though, watch out for that reindeer in the second row on the right…he clearly is up to no good.

How we got to December already is beyond me.  I feel like I just put up my Halloween decorations on the house and made my contributions to the Harvest party at school, yet the red and green bins from the basement are now out and I am filling out Evite forms and combing Pinterest to figure out what I will ruin three times before bringing it to the holiday party at school.

I am a working mom with  a 5th grader and a 7th grader.  In the last 7 years, I have:

  • been a room parent 7 times (including the year I was room parent in BOTH my kids classrooms)
  •  planned 9 Halloween classroom parties and 10 winter holiday class parties.
  •  baked an estimated 1000 gluten free friendly treats for classroom and school wide events.
  • been a chaperone at EVERY  Walk-a-thon, school celebration and field trip (one year at the Valentine’s fair in school I lost a kindergartner….and in all fairness and disclosure, no one told me he didn’t speak English….and I found him…)
  •  volunteered weekly in 4 different classrooms, shelved books in the library for 3 years and worked the cafeteria snack table
  • sold crappy novelty items no kid NEEDS at the school store weekly for 4 years
  • stapled, folded, stuffed flyers, envelopes, book fair propaganda, changed out bulletin boards, helped clean the building before summer break, cut out thousands of shapes for projects, hole punched writing projects, graded math papers, labeled book shelves, organized folders, passed out ice pops, redirected children, gave out hugs to kids I didn’t know, tied shoes, located ice packs, made meals for teacher appreciation days

I think you get the picture.  An estimated 2000-2200 hours of my time since 2009.  Basically….a 40 hour a week job for one full year. I rarely see my child during any of these hours spent at school. And before anyone thinks I am judging the non-volunteer moms, I am NOT a sanctimommy. And no,  I do not want a cookie, a prize or personal recognition from anyone.  Other than to say this….

I have had to land my helicopter on the roof of the school for two simple reasons. I have a child who doesn’t have the capacity to tell me about his friends and a school that only recently took steps to discussing making that meaningfully different.

This is not an unusual phenomenon.  I had a conversation with a special ed coordinator in another school district about this once.  She also “lives in the field” like I do having a couple of kids on IEPs.  I mentioned this struggle to her at which point she stated “I understand, but at some point, this isn’t the school’s responsibility (to help special needs parents get to know each other).  Since I was visiting her district professionally, I didn’t say much mostly because I had a feeling that her IEP-ers at home are verbal.

I didn’t start off this way.  I was your regular, run-of-the-mill, elementary school, product of divorced parents volunteer mom.  While the 1970s were not known for tales of excellence in parenting,  as a child, I was aware of the presence of the other moms who volunteered or were there for events during school. I promised myself I would one day figure out how to be one of the moms who ran the mimeograph machine on Thursdays.

Then Autism came along and and early on  I realized volunteerism wasn’t going to be a once-a-week-show-my-kids-I-care kind of activity.  My youngest was turning 8 and for the first time expressed excitement over his own birthday. “CHUCHEE CHEEE!”,  he exclaimed after I asked him where he would like to have his party.  Since he had not been invited to any  birthday parties since starting school, I wrote several school staff asking if they could help with names.

The only response I got was from the regular ed teacher with a polite reminder that due to confidentiality, she could not tell us the names of his friends.  She also reminded me that she would not be able to pass out any invitations if we weren’t inviting the whole class.  And that was it.

I was perplexed.  She did know my child had a severe communication disorder, right?  I politely acknowledged the ramifications of what she was saying and pondered in the follow up email if there were anything she could do to help us figure out a solution.

No response. So after a week,  I wrote again but with a much more explicit message.

My message was: “As far as I know, it’s not a confidentiality issue when one child approaches another for their name and phone number.  That’s how typical children do that.  We have programed the following into his talker (speech generating device):

“My phone number is ***-***-****.  Can you have your mom call my mom?”
OR
“Can I have your phone number?  My mom wants to talk to your mom”
Given its on his IEP –the need to prompt him to initiate social interactions as well as guiding him use  prompts on the talker, I am sure someone will find the right opportunity to help him with this interaction.  Its amazing to see how far he has come.  As any parent would be, we are so proud and excited for him.”

Fortunately, the principal at the time appreciated the value of enlightened self awareness and stepped in to make this happen. He had the most glorious time with his friends at his own party. While he was blowing out the candles on his cake, I took the instructions handed to me by the school on “intro to helicopters” and filed it away for later.

(For those of you who don’t know,there is nothing in FERPA (Family Education Privacy Act) that would actually prohibit a teacher from giving you the first and last name of any student your kid is hanging out with as long as it is directory information and there is no expressed exclusion in writing from the family, or if the child gave it on their own.  So no…its not “confidential”. This includes special education students…FERPA would prevent her from telling you that the child was receiving special education services, not from giving you their name…and I get it….I wouldn’t want my name and phone number handed out willy-nilly either…except my friend’s child with language hands hers out all the time simply because he can)

I am privileged to be self-employed and have a job that affords me the flexibility to work around my kids’ schedule and needs.  When you have a child with a disability, weekly mid-day therapy appointments, meetings and emergencies are part of the deal and already require us to be like Navy Seals.  We are flexible on a moments notice to switch gears and take care of whatever arises unexpectedly. But those 9-5 parents or single family households with special needs kids are truly super-parents….Space monkeys exploring uncharted territory  different than typical families with similar scheduling issues. They do not have a finite number of years in which they have to sweat it out every day, and they certainly don’t have an ounce more  flexibility to find time to sit glassy-eyed in an empty classroom pulling staples out of a cork board.   Volunteering for the purpose of  learning every nook and cranny and connecting with the people in my child’s world just to have a frame of reference would likely happen anyway for me but definitely not with the volume or tenacity.  I am lucky to have this as an option, but many…if not most working parents of special needs kids do not.  The onus is on the parent to try to figure out how to connect the dots to create a fulfilling world outside of school for their kid and many times they aren’t even given a pencil to do that.

So when you get that email or phone call that it is time to start collecting money for your teacher’s end-of-the-year-gift and its from the two moms of kids you never heard of (because each spend a total of 1 hour a day in the classroom), now you know why you don’t know who they are.  Reach out to them….because they don’t really have time to be collecting your money…but they will make all the time in the world to find out more about your child.

**The inspiration from this piece came about a month ago after yet another disheartening situation. A few weeks ago we had a meeting where I had to be very firm and direct to make sure this message was heard. I believe it was heard by most in the spirit it was delivered. Most of the team who work with my child have worked with him since the beginning.  Those direct workers are caring people for certain and they are working on a plan to rectify some of this type of issue.  Stay tuned…if you are in this dilemma for your child!

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I would rather___________ than go to curriculum night.

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Many years ago when A2 entered the public school system he came from a private school that had a peer program and an ABA focus.  He is so influenced by his peers we thought maybe it would be a good time to bring him back to our school district while he was so young.  It was no small decision and perhaps ultimately made under the haze of xanax.  I waltzed into school on curriculum night, notebook in hand, mascara and lipstick reapplied. I waved and smiled at other parents I recognized from the neighborhood. We chatted about the end of summer homeowners association picnic and how nice the tennis court was looking now that they repainted it and we absolutely should get together for tapas sometime (how has that not even happened yet?!). The desks were so small and facing each other.  Tidy containers of crayons divided by color, posters on every square inch of wall space, shelves that housed bin after bin of books. Mobiles hung from the ceiling.  Not at all what his ABA classroom looked like…way too much to distract..but it was all good.  He will learn to adapt to this no problem…the neighborhood kids are all here!  Someone took the time to take all the crayons out of the boxes!   I found A2’s desk and it had a paper name plate with cartoon pictures of pencils and school buses just like everyone else.  There was an envelope on his desk with all the “getting to know your child” papers like everyone else.  There was a tidy blue folder with the agenda for the evening waiting for us just like everyone else.  Sure….my mother hips were hanging over both sides of the tiny chair and sure, the middle aged teacher greeted us and held her gaze with my husband much longer than she did with me…..but that’s what we do here in public school…normal, regular people stuff.  Then the teacher started talking.  And talking.  And asking us to turn pages in our packets.  And telling us what our kids can already do walking in the door on the first day and where we could expect them to be when they walk out on the last.  And the road map to get there sure as hell was not the road map to get to Italy or even Holland for A2.  Nope. Flyby right over Europe to the heart of Syria (which I hear is really, really nice this time of year….really nice. Hot.  But it’s a dry heat.). I did not see the person who punched me in the stomach. I didn’t even know that a sucker punch was possible in a mainstream classroom. Before I could find out if a bitchslap was next, I gathered my things and walked out.  That teacher never did follow up with me to find out why I left, or if I was ok or if my husband liked her new back-to-school-sleeveless-blouse.  A2’s intervention specialist saw me in the hall and gently said “..come with me to the resource room where he is a rock star. I’ll show you around”.  She meant well, but he could be a rock star at his other school.  I decided right then that the only way I would ever cope in another curriculum night was if I could sit at one of those tiny desks with a Big Mac and a bottle of stoli while listening to other parents ask questions like,”what if my child is above the standard for reading?”  or complaining at the lack of computers in a room he won’t actually get to be in. I might be able to get away with the Big Mac…but the vodka would probably be  frowned upon at the administrative level.

Don’t misunderstand…my boy is perfect in most ways to me (sometimes he is a bit of an asshole…no one is 100%)…I don’t fit a mold and when I realized I was going to be a mom 13 years ago I had no expectations my kids would either.  I embrace the weird and inappropriate and many days it takes all of my will to push my monkey brain back into it’s cage before it starts flinging poo.  I’m ok with all that.  What is hard is that the rest of the world generally is not.  While he gets the desk and cubby just like everyone else, he doesn’t get to have sleep overs, or bathroom privacy or even a way to ask  other kids if they will skype or text him later.  Due to “confidentiality” the helpers assigned to him are not allowed to tell me the names of the kids he would probably want to ask anyway.  He doesn’t get detention for talking out of turn or showing up to class late.  He doesn’t trade carrots for cookies with the kids at lunch. The bins of books must still be read to him and doesn’t get excited when he hears about the release of the newest Harry Potter book.  And curriculum night?  Well…all those things are written in the blank spaces between the lines on the syllabus.  The syllabus that is only visible to certain parents.  Not just like everyone else. The tiny desk is like a mirage.  Those things don’t happen because those are not the things that are important to the people who spend 7 hours a day with him.  Goals are set to reflect the things A2 CAN’T do rather than what he can whereas the curriculum for the rest of his peers are focused on what they WILL do.  And not just at 80% accuracy in 4 out of 5 observed opportunities.  I spend my life cherishing the tiny accomplishments inching along unseen by the naked eye or letting hurtful comments roll of my back like water off goosefeather by people who meant no harm. I can sit through all of that, but it reminds me my child is lonely.  And I won’t sit through that.  So tonite, the very last curriculum night of elementary school for me ever….like a pro  I went in, signed my name on the volunteer list, eyeballed the room of parents , took 2 tums to settle my stomach in anticipation of the Big Mac in my mom-bag and walked out.

The bottom line is I would rather have heartburn and a hangover than go to curriculum night.  What would you rather do?

Here is a short list I had some friends help me compile.  Thank you Dava, Kelly, Anne, Carmen, Jessica and Katie

Express my dog’s anal glands

Watch another episode of Caillou

Make out with Donald Trump

Fall asleep in an Uber

Run 5 miles in the summer without chafe guard

Receive a text from Anthony Weiner

Wear truck nuts as a fashion accessory

Get through a Monday without coffee

Drive across country with my kids with a dead iPad battery

See my dad in a man-thong