Saturday, January 17, 2009

I Don't Quite Get It...

I gotta vent. And this is going to come out really catty, but I just really don't get it.

As any of you who've read this blog for any period of time know, both the wee ones go to a special needs preschool. In Illinois, once you turn three you can be screened to see if you qualify to go to the Early Learning Center in your school district. As of this year, you need only one qualifying criteria, but you used to need two.

They range anything from being a multiple to low income to having been a part of the Early Intervention program to English not being your native language to having a sibling who attended and more. Of course, if you have a developmental delay, you automatically qualify and receive an IEP (an Individual Education Program) that has the goals your child is striving to meet that year.

Mister Man qualified to go because he was part of Early Intervention (which meant he had to be screened and evaluated as to whether or not he needed to attend before his third birthday) because he was a part of the EI program, as well as because he had gross and fine motor delays and some pragmatic language delays. He doesn't have an official diagnosis, and my sincere hope is that he never needs one. But this is the right place for him.

Do I love him any less because he attends this school? Am I embarrassed about the fact that he attendst his school when the majority of my friends have "normal" kids who go to private preschool? Absolutely not on either count.

Little Miss probably would be fine not at the school. She was part of EI but graduated just after turning two. She doesn't have an IEP but attends as an at-risk child. They are somewhat concerned about her balance, but I'm still waiting for that call saying they want to test her to possibly develop an IEP. Cynically, I think the principal wanted Little Miss at the preschool so that I would still be involved after this year.

Because this year, I'm the PTO president for the preschool, and I do a lot of work for it. I enjoy trying to make a difference there, and I recognize the importance of it. The woman who was president for the two years before me was quite possibly a better president. She's a stay at home mom and is involved in a ton of community organizations so has network connections everywhere. Hats off to her for doing a great job.

This year, her son moved to kindergarten, so she handed over the reins of the presidency. She didn't totally step away from her involvement in special needs causes, however. She co-founded a special needs organization for our area that focuses on all the support and advocacy you need outside school. She's currently the president of that organization.

I can't commit to any more meetings or organizations right now with my schedule, so I haven't seen her in action in this organization firsthand, but I can only imagine the effort she's putting forth and the bang-up job that she's doing. She's very vocal in her support or her child and all children with special needs. In fact, she was one of those spearheading the effort to get our board to approve building a new school.

So you can imagine the shock when she friended me on Facebook but then immediately sent me a note on my home account. "I want to be your friend on Facebook, but please don't say anything about Bart (her son). None of my friends from high school or college know anything about him, and I'd prefer it stay that way."


Her son doesn't stick out. He's much like Mister Man in many ways. In fact, they were in the same class last year and got along famously with another boy. I keep thinking about this. Mulling it over in my mind why she doesn't want anyone to know.

In a way, I'd totally understand if she were just someone that I'd met through Mister Man at school who wasn't involved and who just sort of stayed quiet. But she's not. She was the face and the voice of our program for two and a half years. She was an advocate. And now, I feel like she's a hypocrite.

It can't be that she's embarrassed by him, can it? I keep going back and forth between that and wanting to protect him from anyone saying something to him to hurt his feeling about not being "normal." But these are people from high school. From college. Who she's connected to only via Facebook and not people that she sees on a regular basis or who would really come into contact with her son where they'd say something to him.

It really feels like she's just trying to save face and create the illusion of a perfect life. And to me... that's truly disheartening. What kind of a message is she sending to all those people who think that being special needs doesn't affect them? What is she saying to all those people who should have their child tested for delays but don't because they're afraid of the labels they might receive?

Why wouldn't she tell these people that it's ok. That you can have a child with special needs and that there are so many flavors of it from things that are barely perceptible to very severe delays. That everyone needs a little help, and that it's better to get the help when they're young than to pretend it doesn't exist and just hope it goes away. That special needs doesn't just happen to someone else but that it impacts more people than you'd ever guess.

I really don't get it. And unfortunately, that single email caused me to lose a lot of respect for her. And that makes me sad.


Feener January 17, 2009 at 5:39 PM  

i just wrote a post like this b/c a mom i am friends with has a son with special needs and i asked her some info about things. i didn't KNOW Her son was special needs i just knew she used some schools i was looking at. she spilled once i asked questions but at the end of the convo she said PLEASE DON'T TELL ANYONE ABOUT MY SON. I was amazed.

Melissa January 17, 2009 at 6:39 PM  

Wow, that's odd. My DD also attended an at risk preschool. It was one of the best things we ever did for her.

I was also very involved in the PTO (co-chair) and I would never think to tell anyone that they shouldn't talk about DD's developmental delays.

But then, I'm not embarassed by them. I figure talking about them can help me get the best information for her.

Sounds like this person is more interested in the perfect aspect then the spreading the news aspect.

It is sad.

MaBunny January 17, 2009 at 6:56 PM  

Wow Michelle, that really is sad...sounds like if she finds people she used to know God help her if they know she has a special needs child...
I've been aroudn special needs children/adults most of my life - they are people, they have feelings, sometimes you just have to deal with them differently. Does she introduce him as My special needs son? I sure as $%^^ hope not! would I introduce any of the individuals I know as Hi this is my developmentally delayed friend so and so? I think not... shame on her....

Michelle January 17, 2009 at 7:16 PM  

Feener - I missed that one (but I'm definitely behind in my reading!). It does always surprise me. There are things where I think the stigmas are gone and then....

Melissa - Possibly... but the odd thing is that she's so into getting the word out and improving services and offerings and everything else. And you're right -- often these preschools/services are the best things for our kids, but if others don't know about them or don't know people who are happy with them... they aren't comfortable getting the services they need for their kids.

MaBunny -- I do really wonder about what her friendships were like before she got married and had kids. And I wonder what those friendships are based on. And that part just makes me sad.

morninglight mama January 17, 2009 at 8:13 PM  

Ah yes, FB can so often be used by people simply to highlight all the AMAZING, AWESOME, WONDERFUL, I'M-SO-COOL-NOW! parts of their life, instead of face to face reality which so often shows the full picture-- imperfections and all.

I have a sister with mental retardation-- I know first hand how difficult it was to grow up, and move around a lot, and choose whether or not to bring friends home since I'd have to 'explain' my sister. But, you know what? I'm not a child anymore, and as the parent of a child with ADHD (and I mean, he's pretty much the poster boy for ADHD, especially hyperactivity!), I have come to realize that it's not the other people who matter. As a parent you have to do what is best for your child, and the irony is that it sounds like this woman does do that-- in all her work that supports her child's education and her outreach efforts. How sad that she can't stand with pride by that work and by her child...

Darcy @ LWM3B January 17, 2009 at 9:00 PM  

Well, I'll play Devil's Advocate here. ;)

I have a special needs son.

And I just don't feel like it's everyone's business. O r anyone's business. The thing about Facebook is that you have to join with a first and last name. There is no anonymity.

Because of that, I wouldn't want anyone talking about my son on Facebook either.

Not because I'm embarrassed. Not because I'm ashamed. Not because I'm worried about what my friends think.

He has a future. And in it, he would probably like to get a job. I foresee him having an interview. I don't need intimate details of his medical history all over the internet... or anywhere where Google could possibly cache a page.

I respect his privacy and his fragile medical history even if he is too young to appreciate it. As a result, I don't use his whole name. I think it will be his decision to talk about his diagnoses (if he has any) when he's old enough to make that responsible decision and face whatever consequences go along with them.

So, perhaps... it's not the illusion of a perfect life she's protecting. Perhaps she is concerned about his privacy and respects the fact that someday he may care what his mother wrote about him on the internet.

Now, this is all speculation.

I'm not even a member of Facebook. :) Maybe she is as awful as you make her sound.

Either way, this is a tough road. I think aligning ourselves with as many people as possible who may (or may not) understand what a mile in our shoes feels like can only be a good thing.


Michelle January 17, 2009 at 9:48 PM  

morninglight mama - I think maybe that's the point that I was trying to make and you put it better. She does so much good for her son and others in similar positions but yet... it feels like she wants to hide him. And again, note the word "feels" because I have no idea her true intentions.

Darcy - Excellent point. And I truly hope that's what it is. I certainly understand and respect wanting to keep children (and others) safe from future issues. That's part of the reason my blog is anonymous and all names on it are changed. I certainly hope that you're right -- but again, she stated that none of her friends knew, not that she wanted to protect him. And please don't think she's awful. She's not at all. She's done so much good for so many people and has so much energy for it. I just didn't understand this one piece of her.

Weaselmomma January 18, 2009 at 7:08 AM  

I completely understand where you are coming from, but reading this a different prospective jumps out at me. Being that her facebook friends are not a part of her everyday life, they simply do not deserve to know her life details. They are not deserving of explanations and such. I doubt that it is embarrassment fueled. Most likely privacy fueled. As a mother of a deceased child, when a peripheral contact in my life asks how many children I have, I say 5 (instead of 6). I count my Claire and would never deny her, but sometimes it's just none of their business and they don't deserve an explanation. It's about privacy for me and not having the energy to constantly rehash everything with every Tom, Dick and Harry who is barely in my life. Just a thought. Ask her about why and you may get better insight.

Mary~Momathon January 18, 2009 at 11:18 AM  

That's sad! Makes me think of that Alanis Morrisette song where the line is "I love you, if you're perfect".

Melisa with one S January 18, 2009 at 1:17 PM  

I think that had she sent the request to you saying "Please don't mention Bart because I like to keep my privacy where my kids are concerned", that would have been way more understandable than "Please don't mention Bart because my old friends don't know anything about him and I'd prefer to keep it that way." Unless she just wasn't thinking when she was sending you that personal e-mail specifically to ask you to keep her son's issues secret, I think this is just weird. First of all, the majority of people in the world don't have anything CLOSE to a perfect life. Second of all, if you're still trying to put that image across to the folks you went to school with, seems like you need to be spending more time looking at what's in FRONT of you than in the rear-view mirror.


I don't even know why she would expect that you would talk about her son of FB on the wall anyway: do you often bring up issues of your friend's kids in a public forum? I'm guessing not. :)

Gina January 18, 2009 at 1:22 PM  

That's really sad. And it won't be long before her son hears something like that and thinks his mother is embarrassed of him, or hep;s not good enough, etc. It sucks.

Cookie January 18, 2009 at 6:31 PM  

Wow! That's a tough one... It's hard to know exactly how I would feel if I were in her shoes. I know how upset and defensive I was when my son was put into a special program at school to learn English. Of course that was the school's mistake, because English IS his FIRST language, but that's another story. Still, I was upset and defensive. I think most parents this way. That there is nothing "wrong" with their child. And it may be hard to get past the idea that being special needs doesn't mean there is something wrong.
Maybe the mom doesn't want people who don't know her or her son to jump to that conclusion? Or maybe she just wants an online world where she can forget some of her daily concerns. Who doesn't?!
Or maybe she's just a hypocrite? ;)

anymommy January 18, 2009 at 6:58 PM  

Tough one all around. Great post Michelle - the post and these comments really made me think, not only about what her motives might have been (good and bad) but also about how my actions/motives might sometimes be interpreted!

Michelle January 18, 2009 at 9:11 PM  

Weaselmomma - That's quite possibly very true. And I haven't responded to her email yet, although I do intend to at some point. It just strikes me as so different how she DOES talk to every Tom, Dick and Harry about her son and his needs, but not to those she was friends with. The juxtaposition is what I'm wrestling with, but you're quite possibly right.

Mary - Ouch! I don't know that I'd go quite that far with this mom luckily, but ouch that's a painful song.

Melisa - Exactly. I'd never bring it up publicly. Another friend whose son was an the SN preschool who went on, I heard through the grapevine had pulled him out and was homeschooling. But ummm hello, not exactly the thing that you make an issue of, ya know? Subtle questions fine but not something that anyone else could read into. Maybe she said that because she thought that *I* am that uncouth and it's about me and not her. Hmmm... (She'd be misreading me, but that's another interpretation)

Gina - Who knows. And she has two other children, neither of whom attend the preschool (only one is old enough now), although in playing with them I can see where they'd benefit... but I'm not *quite* close enough with her to ask why she doesn't at least get them screened. And I think she's got enough sense to ensure he doesn't think he isn't good enough for her.

Cookie - Actually, the online world where she can get away from everything she does on a day-to-day basis is an interesting idea. Maybe this gives her some time to take a break. I like that theory.

anymommy - Glad you enjoyed it. I actually like all the thoughts and different perspectives. I know I'm not always right, and it's really nice to see other POV. And yep -- how we're perceived is always the trick, isn't it? If only more posts were this thought provoking, right?

MaNiC MoMMy™ January 19, 2009 at 10:56 AM  

It's very sad, and that she was the president of the school, an advocate for the school. Just seems like she's very catty. Like I'll live this part of my life this way, and the other part this way.

And of course, you commenting about stitches on my blog is gonna get me to come over here in a hurry to find out why so I'm going to keep reading! : )

And of course, the reason I'm not reading is because I haven't read ANY blogs lately -- I'm running a blood drive for cryin' out loud! : ) BIG GRIN!

Michelle January 19, 2009 at 12:45 PM  

Manic - Well good to know what works ;) You know I was teasing about not seeing you anyway. I'm still not sure of her motivations, but I will say that I feel a lot better with other people pointing out other far less nefarious reasons for her email.

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