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Apr 2, 2012
06:00 AM

Invited to the carnival…but can’t ride any of the rides.

Invited to the carnival…but can’t ride any of the rides.

Lisa Lightner and K

Lisa Lightner is a Chester County, PA mom of two. This post was adapted from the blog A Day in Our Shoes, which she co-authors. It provides support, resources and advocacy services for parents of children with special needs.

This has not been a banner week around here. I’m just exceptionally busy with commitments, both personal and professional, and there are a few issues with my blog. I’m just trying to wrap my brain around some of it. But one of my tasks this week was that I needed to complete K’s kindergarten paperwork and turn it in to the district. I thought it was going to be just another item on my to-do list that would be crossed off, but ha...my emotions had a different plan.

First, last year, K was age-eligible for the kindergarten (from now on known as KG) transition, but I missed the registration period. I don’t remember the reason, but I wasn’t available the week of registration and had to go in at a later date and hand in the papers. This year, I made sure that I was available during registration week. Our district offers several time periods, 2-3 hours in length, over the course of this week. You can choose morning, afternoon or evening times. I chose to hand mine in today, not for any particular reason other than I thought that a mid-week morning would be less crowded, therefore shorter wait times. The letter with the paperwork said something about “If the lines are too long and you cannot wait…..please call us….” and frankly, I hate waiting in line. That was the only reason I chose Wednesday morning, in addition to having an open work schedule this morning.

So off I went. No big deal, right? K was already at school and my mother-in-law was at my house babysitting my 3-year-old. “Be back soon!” I hollered as I got in the car. I don’t know exactly what I expected, other than to just hand in some paperwork and be on my way.

Boy, was I wrong.

No big deal, right? Boy was I wrong.

First, I was greeted at the door by people who were presumably parent volunteers. They cheerily welcomed me and asked “Would you like a tour of the school?” I quickly deduced that K will probably never attend this school, so I politely declined, as it wouldn’t be necessary, right? They gave me a number, like at a deli counter, and I took a seat to wait until my number was called.

That’s when it started to hit me. I was suddenly hyper-aware of my surroundings. This place was like a carnival. They were inviting kids to visit the playground. They were taking tours. Parents were excitedly talking to their kids about “going to school” and exchanging niceties with people such as “Maybe we’ll be in the same class!” or “I bet you’ll be on the same bus!”

I was at a carnival, but I was not going on any of the fun rides.

Sucker punch after sucker punch hit me in my stomach. K was never going to be here. This was not going to be K’s first day of school, he’s been going to school for 3 years. On the same bus as you or in your class? Nope, I doubt it, my kid rides the short bus to the special school. Check out the playground? Yeah, sure — let me just get his aide first so that she can verbally prompt him while I do hand-over-hand everything for him. Oh by the way, did I mention that he can’t really see, so is everything on your playground in black and yellow contrast, so that he doesn’t hurt himself?

I couldn’t believe the emotion that came over me, and I quickly ran from the lobby and asked where the restroom was. This poor volunteer guided me down a long hallway, and poor thing, this is not what she thought she’d be doing when she got up today. I was half-crying and half-explaining to her why I was crying. And worse yet, we couldn’t find the ladies room. So she left me in the cafeteria (which I said was fine) and said, since there was no one there, that I could take a few minutes to regroup.

Only it got worse. Because in the cafeteria I was again reminded of all the normal milestones that K wouldn’t be doing this fall. He has feeding issues and needs 1:1 for all meals; purchasing a cafeteria meal and eating with his peers just isn’t an option. He’ll go to the ‘special school’ and I’ll dutifully pack a special lunch, day after day, and he’ll eat in the classroom while speech and occupational therapists guide his every bite, while his personal aide offers either praise or correction after every bite. And in the cafeteria was a stage. So again I was reminded of plays and concerts (he’s non-verbal) that he won’t be doing. Maybe it will be for his entire academic career and maybe (hopefully) it won’t………..but “normalcy” is not on our menu for this year.

In the cafeteria I was again reminded of all the normal milestones that K wouldn't be doing this fall.

So I took a few deep breaths, and figuring I would just power through this, headed back to lobby.

First station took my paperwork, made sure I filled out every form correctly and sent me to second station. Second station was nothing more than than a person inputting all the information from said forms into computer. Luckily, since I did begin this process last year, most of our information was already in the system, so this went quickly. Then I waited for the third and last station, which was our health information.

Just when I was starting to compose myself, I handed over the papers containing K’s health information.The woman in the chair next to me was still going through Step 2 of the process. She was so cheery and happy....I wanted so desperately to be cheery and happy. I wanted so badly to be touring this school, to be showing my 5-year-old potential classrooms and meeting potential new teachers and potential new classmates...but those are not the cards I was dealt.

So the woman looked at K’s health stuff and said (politely) “Oh, so we have a lot going on here?” and I don’t remember if I replied with a “hmph” or a “pffft” but it was one of those. She said something about “Well, we need this information and wherever he goes to school, they will be looking to us to provide this health information.” And then I looked at her with tear-filled eyes and said “You know, I know it’s not you personally, but it’s really cruel of you to make special needs parents come here and do this……..when we both know that Kevin is never coming here.”

"It's really cruel of you to make special needs parents come here and do this."

And for the second time that day, I gave a person a scenario that they certainly weren’t expecting when they got up today. And I’m sure she felt uncomfortable and all that stuff……but she said the wrong thing. She said “Oh you don’t know that. Lots of parents think that their kid won’t end up coming here and they do…..” and I cut her off. “No. We went through the transition process last year. He’s not coming here.” I know she meant well, but, well…….to have a mom in such emotional distress, and then to not validate their feelings….I don’t have to tell you all about that. Luckily, at that point she did realize what she was dealing with and said “I’m not going to keep you here another minute. You can go and I’ll take care of his paperwork” and I wasted no time grabbing my purse and running out the door.

And I cried in the car and cried all the way home and intermittently throughout the day.

Since at our blog, A Day in Our Shoes, we have a mission to always end on a positive note or be solution oriented, I’ll share with you some other things. First, I plan to write a note to the superintendent, detailing to him what happened today, and suggest that for future KG registrations, that they offer a special needs only session. There are 8 or 10 sessions throughout the week, so surely they can dedicate one to just special needs families, should those families choose to attend that one.

Second, I had a 2pm “thing” with the The Arc of Chester County, which involved a presentation. I was to talk about what the Arc meant to me and my family, and Arc advocacy. It reignited my passion to help other families with special needs, and solidified my union with the Arc. The Arc is my extended family that I so desperately need some days.

For those who ask why special needs families segregrate themselves so much and stick to groups that are just like them…some days it just hurts too much to try to be a part of your world. Some days we just need to be with families like us, that understand the lost milestones, the experiences we’ll never experience with our children (with special needs) and other complications we encounter.

Old to new | New to old
Apr 3, 2012 12:56 am
 Posted by  oxygenmomma

I was having a FB conversation with some woman about a situation as to why a speaker had taken off their oxygen while speaking (this was an elderly man). These were all special needs parents. A non special ed mother was stupid enough to come into the conversation. I know her personally..and suggest that "maybe it was so that no one would trip on the oxygen tubing"....so someone should have to have crappy sats just so no one would trip on his oxygen (instead of the mic would pic up the sound of the oxygen, or he just was embarrassed by it ect..) She seemed to be surprised when I found that terribly offensive..and I basically ripped her a new one.

A few minutes later I thought..."this is why I don't try and deal with people who are not of the special needs world". Not only do they not get it..they don't understand how to just apologize for being ignorant. This is why I'm a hermit in my house and I no longer try.

Great article Lisa...although I didn't have the same experience with enrolling Wes. I see pics of his class every few weeks in the paper and he's not included..and it bites hard. We haven't had a first day of school pic, or even school pictures pic, that was robbed from us.

Jun 6, 2012 02:44 pm
 Posted by  Susan

Dear Lisa,
I was at KG registration yesterday in our school district and I had so many of the same feelings...
I sat there while over 100 kids and parents sang and laughed and enjoyed a special day of orientation;
all the while thinking that had my daughter attended she would have had her hands cupping her ears
yelling "too loud, too loud!!" When local moms were asking, "where's A?", I was evasive, saying it was best
for her to be at camp with her friends...Today I'm surfing the internet again, looking for that "magical" list
of schools that might be "out there" where my daughter might thrive in kindergarten...Anyway, thank you
for sharing your story. It made feel less alone...

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About This Blog

Outstanding Delaware Valley mom bloggers share insights about their kids or themselves, family experiences or ways they handled parenting situations. Their items — often reposted from their blogs — reflect everyday experiences that anyone can relate to rather than political viewpoints or belief systems.

MomSpeak Contributors

Trish Adkins, Yoke
Jennifer Auer, Jersey Family Fun
Stacy Heenan Biscardi, Wifty & Shifty
Hillary Chybinski, My Scraps
EJ Curran, Four Little Monsters
Darla DeMorrow, The Pregnant Entrepreneur
Rachée Fagg, Say It Rah-Shay
Raya Fagg, And Starring As Herself…MRSRFKJ
Erin Flynn Jay, Mastering the Mommy Track
Marion Kase, Helicopter-Caterpillar
Jean Ladden, Jean's Book Reviews
Brie Latini, ( . . . a breezy life)
Toni Langdon, Tickles and Time Outs
Lisa Lightner, A Day in Our Shoes
Jeanine Ludwikowski, Mommy Entourage
Jeanne McCullough, Mom Hearts Pinot
Trina O'Boyle, O’Boy! Organic
Kelly Raudenbush, My Overthinking
Sandra Telep, West Philly Mama
Marissa Kiepert Truong, Land of Once Upon a Time
Lisa Weinstein, The Mixed Up Brains of Lisa Weinstein
Shivaun Williams, Dar Liomsa (In My Opinion)
Paige Wolf, Spit That Out!

If you are a Philadelphia-area mom blogger and would like to contribute to MomSpeak, please e-mail editor@metrokids.com.


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