Self-Advocacy

[LaurensMom]

DD is a freshman in college - living there. The school has stressed from day 1 that they expect students to self-advocate. They say she'll need it for the "outside world".

DD is in a very difficult/time consuming engineerig major with two weekly projects, one semester-long project and a total of 5 classes. She also has a rigorous training/workout schedule. She's doing marvously at time-management, is maintaining a 4.0 so far, and is growing very strong as a result of her sport-workouts. She has little time for anything else.

Why is it that because she has a disability that we have to add more on to her plate by having her self-advocate? I'm of the opinion that PA problems at school should not interfere with her studies. Too much is at risk with, primarily, her life being at stake and secondarily, with the amount of money we are putting into college.  I can hear the words "helicopter parent" being thought (albeit never verbalized).

DD could self-advocate now if she had the time. She does handle the little daily things, like the cafeteria, small groups, friends, etc, but the problem that recently arose was due to a community service project of making PBJ sandwiches inside the student center, right next to the cafeteria, where the peanut smell was so overwhelming that a non-PA friend told DD that she left there gagging. I've no problem with the idea of the project just the location of its execution.  It needs to be addressed and we will be taking care of it.

So I guess I'm just curious - what is your opinion on self-advocacy? Case by case? Do you hear the helicoper-parent label?

[CMdeux]

Yes, and even moreso because of my daughter's AGE.

In other words, because she is 15, we are left frantically coaching her to do things advocacy-wise that we'd NEVER hesitate to involve ourselves in were she 18 instead.

But because she is 15, she MUST appear to university professors, administrators, etc. as though she is "mature for 18" in practice.

She is managing awfully well, truthfully-- but it kind of feels like it's barely in check a lot of the time.  She tends to not
"self-advocate" in a lot of situations simply because...  well, the "special snowflake" label is there like a specter for HER, and she knows it.

So if we are involved, we're helicopter parents.  If she says something, she leaves a bad impression as a special snowflake. 

Her solution and ours?

Make it so that you don't HAVE to rely upon others for your safety.  Pack food, or do without...  be able to gracefully and discreetly exit any place, any time... and keep your eyes open to your surroundings.

I have no real advice for living ON campus.  I judged it to be an impossible task, honestly-- and I say that as someone who has been a university professor.  There is a reason why our answer to that particular conundrum was "Nope.  NOT happening."

[LaurensMom]

So where do you think the line is between 'self-advocacy' and teaching the school how to do the right thing?  Don't do an enormous PB project inside the center of campus life but use some of those huge tents they have and do it right outside.  They just don't think of these things because they are not

[CMdeux]

Well, when they have the facilities already... it's low cost.  When they don't, then renting tents from an event planning agency DOES add cost. 

Looking pragmatically in this setting, there ARE real financial consequences for some accommodations, and not for others.  It rather depends on the setting's particulars, honestly. 

As an example--

Is it reasonable to remove PB from a dining hall?  Well, it depends-- on the student population (are there a lot of vegan students?) the campus size,  (is there another dining hall?), and the student's history  (how sensitive is the student in question, and are there other alternatives?), just off the top of my head.

Is it reasonable to ask students to NOT EAT in class?  Not really.  At least not all the time, that is.  This involves the health and well-being of those other students, too. 

This IS a transitional environment, recall-- so the stuff that applies in K through 12 does NOT NOT NOT apply here.

Yes, the disabling condition is the same.   (And believe me, we're living with the reality of food in class presenting a barrier).


If "the right thing" were the SAME thing for all students with allergy, then I'd say that the onus should be upon the school to learn to do it.  But the problem is that it is not.

This is where we get into a situation where DD literally CANNOT live on campus because they won't waive the dining plan, which is flatly too dangerous for her to use-- and they want to "learn" how to feed her from a shared facility, see...  well, that isn't safe, and it never will be.  Period.  But they want us to tell them how to make it safe by working with a dietician.     Because that IS what is needed for some students with food allergies-- the ones that have this as a dietary issue that doesn't impact other facets of their lives.


Um.  If that WERE possible, our house wouldn't still be stripped of some allergens after all these years, now, would it?

So, in some respects this is JUST like secondary-- 504 applies (kinda)-- and it's about INDIVIDUAL needs, not general policies.  The difference is that along a progression that ends in workplace and adult accommodations under ADA, this occupies a middle ground between secondary (where parents and schools operate in tandem, switching off duty-of-care daily), and the working adult world, where the individual is the ONLY one responsible for him/herself.

Okay.  So the school has an obligation to meet the needs that the student presents them with.  They do NOT have an obligation to anticipate those needs in the way that secondary institutions do.  This is (again, being blunt) probably as it should be, given that this is an environment which is ideally serving as an incubator for young adults to gain independence.  The institution has to be TOLD before making accommodations for a student with a disability.     Anything else is patronizing and presumptuous of them, and undermines the student's agency and autonomy.  NOT everyone wants to be "protected" from their food allergens.  There are students that would be angry if a post-secondary institution DID behave that way.  KWIM?

[Macabre]

We will not be there for two years. So I am clueless about how this will really work. But my assumption is that we will work with the school beforehand, but once we drop DS off its really going to be up to him to manage life there day to day. I do not see myself handling day to day navigation with the school--or with his homework or social life. If he needed some help and asked for it, I'll be happy to help.

But this kid on the first day of 4th grade at a brand new school (new state--we had just moved), told the principal insistently that he would not sit down at the lunch table because it had not been cleaned off.

We had self-advocacy written into his 504.

He's bern quite good about it all along but has sometimes needed me to step in. However ,in college I assume he'll take care of things unless he needs me.

[LaurensMom]

(Sorry...in my haste, I didn't even finish the sentence. They do have the tents on campus.)

Not arguing with you - trying to understand my thoughts and position. Your insight as an educator helps.

Dining hall floor-plan looks almost like a food-court in a mall. Following that analogy, one cafe' is completely top-8 allergen-free but they do a fantastic job at keeping the food healthy, allergen free and tasty. They have a safe salad bar and she can go to any of the other sections to get anything, she just needs to check first. You can ask anyone in the dining room a question on food allergies and they give you an intelligent response - not a canned one. It's great. No one needs to self-identify because anyone can eat from any area.

And don't get me wrong, I appreciate it how far they've come but I think they (along wtih all colleges) still have work to do. If she were to walk out of the dining hall, as a commuter or resident, and this PB event was going on, she could have had a major problem if her reaction 'cup' happened to have something in it that day due to a cold coming on or environmental allergies.

If she were in a wheelchair and couldn't get into a part of the school, because the handicap is visible, I'm guessing that the school would jump to fix the problem. I'm not saying that someone in a wheelchair has it easy and all accomodations are given without any effort, I just mean there is no 'convincing' that has to be done. Wheelchair can't get up stairs. Plain and simple. We have to educate, get papers signed and jump through hoops of fire before something is done.

But if I have an idea...especially one that doesn't cost them excessive money...like the use of tents...is it 'hovering' to present the problem, educate and make this request because DD just doesn't have time to fight these battles?

[LaurensMom]

We will not be there for two years. So I am clueless about how this will really work. But my assumption is that we will work with the school beforehand, but once we drop DS off its really going to be up to him to manage life there day to day. I do not see myself handling day to day navigation with the school--or with his homework or social life. If he needed some help and asked for it, I'll be happy to help.

But this kid on the first day of 4th grade at a brand new school (new state--we had just moved), told the principal insistently that he would not sit down at the lunch table because it had not been cleaned off.

We had self-advocacy written into his 504.

He's bern quite good about it all along but has sometimes needed me to step in. However ,in college I assume he'll take care of things unless he needs me.

Wow- good for him! You've obviously done well.

DD self-advocates for things like that, checking foods, making sure her sport-trips are safe, etc. We only get involved when it it something that can't be handled right there and then. Anything that takes time, she just doesn't have it. Her workouts are at 7am and she is going until after midnight with studying and projects. She has no time.

Our experience was that schools won't work with you until students are accepted and committed (deposit in). In our case, she'd seriously only considered scholarships offered by two schools - accepting this school because she liked it, and thankfully, we believed it to be the safer of the two ( and still do, for that matter).  So you put in your deposit, turn down other schools (and any money offered) and it is a huge leap-of-faith to the level at which the chosen school will work with you.  I spoke with the disabilities office of a 3rd school recruiting her and after about 2 hours of conversation he ACTUALLY said to me, "I won't lie to you. It would be safer for your daughter if she didn't come here".  How that isn't a violation of ADA itself, I'm not sure. That's like saying to someone in a wheelchair...we refuse to make any ramps for the wheelchair. I just don't get the difference.

Honestly, we are blessed in many regards. I would never bad-mouth the school because in general, they are way ahead of the game. However, not sure that excuses them where they are lacking. Given she's has ana by smell in her history, resident or commuter, she could have had a problem here. The PB event was nearly at the entrance of the dining hall. It was the equivalent of her nearly walking into a Texas Roadhouse.

So I come back to the same question, am I hovering?

[CMdeux]

Well, I don't think that anyone can really answer that because it's an individual thing.  I'm far more involved than Mac's DS will anticipate his parents being... but then again, our kids are the same age, and see-- she has two more years ahead of her in terms of fostering certain skills in her DS beforehand, he has fewer allergens than DD... so.  Even though the two kids are of an age and have HELLA similar rxn history, still not the same.

I cannot honestly say that I would call it "hovering" at all-- but then again, I'm not the person who needs to see it that way.  Your DD's disability office needs to.  Speaking quite plainly-- they are unlikely to see it any other way.     They will want your DD to be the one calling, not you. 

Yes, this is an additional burden for our kids.  That's the nature of disabling conditions, however.  If it weren't an additional burden, it wouldn't be a disability.   

And actually, the mobility thing isn't as neat and tidy as it seems on college campuses, either.  Truly-- I've known some people in wheelchairs that had to get keys to special freight entrances of historic buildings, and who were expected to "use the restrooms in the building next door" because the ground floor restrooms were opposite gender only.  The problem here is that when a college building is on the National Historic Register, there is a limited amount of ADA retrofitting which can be done.

College often requires some creativity and flexibility on the part of not only the institution-- but of students, as well. 

Back to that additional burden-- the same thing is going to be true in internships and employment.  The burden is going to be on the (prospective) employee to identify what they need, and for all parties to recognize that it's a moving target since not all events/situations can possibly be ANTICIPATED in advance.  Not every group on a college campus is going to think to run a plan past disability services for clearance.  KWIM?

Should all activities be made 100% accessible to ALL students?  Probably not-- or a lot of physical activities are going to be nixed. 

[Macabre]

Hella similar. 

But yeah--I am so clear that being PA-only is going to make things so much easier for him in college.  GingerPye's DD is doing this with dairy and peanut this year and I am just gobsmacked at that. 

I think CM is right.  It's individual.  And they will probably think you are helicoptering it.  Because that is their experience with parents who hover and call professors about grades and such.  Because you are on the front end of the FA wave, they are probably going to put you into same category as the others.  They have no other frame of reference. 

And I'm thinking--yeah, what if they do?  Really--your DD is there four years. You are giving them tons of money.  Maybe so what if they think of you as hovering.

They really have no idea what they're in for in a few years.  None.  Around here, when we've surveyed members about the date their FA child was born, the big curve up has started with kids born in 1997/98 (they are juniors in HS this year).  And certainly reports have borne that out.  Your DD is still on the very front edges of a huge tidal wave that's about to hit them.  They have no clue what 's about to hit them in the next few years.

So yeah--they probably don't have the right context for you. 

I'm guessing you were the first in your DD's SD to fight for accommodations for food allergy.  DS was the first 504 for FA not only in our Virginia town but also when we moved to the Twin Cities just before high school.  Trail blazers we are!

And I think this is another trail to blaze. 

Of course your DD should not be prevented from entereing the dining hall. The school is just not getting it right now, and someone needs to clue them in.

But should it be your DD? You?  I can't answer that.  It's something I'd probably encourage my son to deal with before I stepped in.  But if it took him more time than he could deal with (say more than one meeting), I would be willing to step in (though seriously, at this time of year, I probably wouldn't be able to take time away from work for something like this).  But I would encourage him to do things first, even if he is busy.

But what the school needs is greater awareness so they plan better.  It's not that every activity has to be fully inclusive, but a major activity like eating shouldn't be prevented because they weren't thinking, yk?


I think I'm rambling now.  But I guess my thinking on this is that it's not about this one event--it's about an overall understanding of things.  If your DD needs your help, so be it. 

[Beach Girl]

Lauren`s Mom, I am 19 in my second year at a very difficult university where the students have an average incoming GPA of 4.2.  It is very very competitive, so I completely understand what you are saying about your daughter having no time to self advocate.  Here is my take on it.  The colleges do seem very stuck on the student self advocating.  Like your daughter, I have been self advocating for years, but between a full class load in a difficult major and a part time job, I barely have time to eat, let alone self advocate.  Here is how my mom and I have worked it out.  We have had some serious problems with my university as far as accommodations.  What we do is if I need my mom`s help (not because I am not capable of self advocating, but because I don`t have time to deal with it), she composes an email as though she is me, then I read it and send it from my email address to whoever at the university I am trying to address accommodations with.  That works well for us.  I think you won`t get anywhere if you try to resolve anything on your own.  By college, they really don`t want to deal with the parents.  I would suggest you just write the email and send it to your daughter to copy and paste so it comes from her email address.

[lakeswimr]

Nice idea, Beach Girl!

[LaurensMom]

Nice idea, Beach Girl!

Yes, Beach Girl, that is exactly what we are facing! And I second you LakeSwimr, it is a great idea! Strangely enough I've done that before on other things but it never occurred to me in this case. Additionally, that keeps her "up" on ways to address situations. Thank you. And even with what I have below, this will still come in handy!

I have to add an update.  I already had email out to the school at the first post. Heard back late last night. They thanked me for bringing the problem to their attention and for the suggestion of the tent! Further they are in process of setting up meeting with diectors of health services, res life, stud. activities, 504 coord and food services. They said their usual situation is that parents drop off kids, say...here is their problem...deal with it. They actually used the word "unprecedented". They said that to have insight into what it is like to like to live with allergies will help them further allergy safety on campus. I had not expected this at all.      Keeping fingers crossed!

[CMdeux]

Oh, I really hope that they mean it, Laurensmom.  indeed for them to be willing to learn from you and her.     What a NICE update. 

[Macabre]

That is fabulous all the way around!

[momma2boys]