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):
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!