And then.. the other part of my reality

[momofrussell]

I just got off the phone with one of the aides in Russell's class and I am so sad. I am in tears really....

One of the little boy's bday is today and a week ago the mom sent home a note saying they were all having Mc Donalds for his bday and to call or email the mom with "our orders". I have no excuse, I never called or emailed the mom. Russell will ONLY do a cheeseburger or hamburger (took us many years to accomplish THAT) and no fries and I prefer milk or juice... but I blew it, I never put in Russell's request.

So I called the school just now to find out if he did ok with the Mc Donalds and to find out what he had for lunch. The aide answered because Debbie was dealing with a sick child going home. I talked to the aide and appologized for never calling the mom and saying what Russell would eat. I asked if they just bought chicken nuggets for the kids or were there hamburgers too? She said there were both but they never offerred Russell anything because his nutrigrain bar broke in half and he was devistated.. and they just decided to procede with his normal meal he usually has. She told me that he did have the cupcake (yeah, who wouldn't) but they did not ever offer him a hamburger.

I was taken back by this for a few moments. I assumed all the kids would want chicken nuggets and there wouldn't BE any other option to offer Russell and I was OK with that , knowing he had food... but there were hamburgers and Debbie knows Russell won't do chicken nuggets... but because he was so upset, they ASSumed he wouldn't DO a hamburger... I told the aide that it kinda sucked that even though I blew it, there WERE hambugers to offer him but he was LEFT OUT!!! Her reply (and this HURTS ME SO.... )?

"Well, he never noticed any of the other kids or knew that they were having Mc Donalds anyway. It's not like he knew"


Talk about a PIT in your stomach. So... because my son is Autistic and lives in his own little world and never notices things, they thought it was ok to NOT include him, because his bar broke!!!! Ok... I KNOW Russell does not notice things... alot of things.. and we too pick and choose to include him.. but man.. it just broke my heart to hear someone else say it.... I understand he was upset and they decided it was best to serve lunch to him this way.. but man... it hurts. I am sitting here once again... crying my eyes out... feeling sorry for my son.. knowing really.. he DOESN'T notice this stuff.. but did they HAVE to tell me.. or truly decide not to offer him anything? I am glad they offered him the cupcake!

I know Russell doesn't know how it feels.. but *I* feel sorry for him....

A.

[meghans_mom]

Awww...A.....that does suck....to hear those words....no child should be left out, and I think it's ridiculous that the aides didn't even make an effort to offer Russell something he might have liked.

Many hugs to you...and to my buddy Russell! Sorry you had to go thru that laurie

[Valerie]

A... I am SO sorry that happened. I work as an RN in a nursing home, so I'm around a lot of people all the time that " don't notice what's going on." But I can tell you right now, that does not make a bit of difference. If there's a party, or entertainment, or special holiday,.... ANYTHING... they are ALL included, and that's how it should be. It should have been the same in your situation.

Parents always feel so much hurt for the children, DS or not, sometimes I think we feel a lot more about situations than they do! Anyway, I'm glad he got the cupcake, and was glad to read your other post about all the milestones!

[Jodi]

Hey A... that's just stinks!

I don't care who is living in what world!!! What if Russell DID get it? What if Russell was "thinking" he wanted a hamburger? Who are they to ASSUME that because of whatever he had going on, he wasn't interested? If they offered him a cupcake, then why not a hamburger? Oh that frosts me!

Awe A - I'm sorry you feel like that, especially after celebrating Russell's accomplishments It sure is a rollercoaster ride sometimes!

[PaigesMom]

Aww, A. I hope you're feeling better now!! As parents we all forget to do things and as parents we all take on hurt for our kids, that they dont even realize is happening - even with our typical kids.

Russell got his cupcake - which I'm sure was the absolute highlight of his day - even moreso than the McDonalds hamburger/cheeseburger.

This is no way excuses what the classroom did not do for him OR what that aide said to you. She could have not been so blunt and she should have realized how that could have hurt your feelings.

I'll never forget when Paiges school told me -

"She is a safety hazard to herself and the other children"

But you know what, safety hazard or not, or knowing what is going on around him or not - which is so ambiguous by the way, and a matter of opinion for others - they're still all ours, so scoop him up, give him a big kiss and go to Micky Dee's for dinner!!!

Take care.

Debbie

[momofrussell]

thanks guys... I think I am kicking myself first off because I forgot to request the right meal for him.. and Debbie wrote that since I didn't request anything for him, he didn't get Mcdonalds... So I think it was the words of the aide and my own inneptness for not making a dang phonecall to the mom.

I don't think they went out of there way to NOT offer a meal to him... but the aide made it sound like that. I know Debbie wouldn't leave him out because "he doesn't notice". The aide used very poor choice of words to me... she is a great aide and she does well with Russell, but I don't think she realized those words stung.

She (the aide) has a "typical" toddler at home. I don't know the exact age of the toddler but I know her child isn't that old. I had gone in to visit one day after taking Reece to her class, and the aide came out to make a phone call. We talked for a minute and I brought up Russell and his lack of speech because I had a question on something. She then says "Yeah, my child doesn't speak yet either and it drives me crazy too sometimes"... and I had nothing else to say to that. She actually compaired her typcial toddler to my child w/DS and Autism that not only didn't speak, didn't really communicate much either.

I found it amusing.... I just don't think she realizes certain things. She use to be a elementary school teacher before giving birth and becoming a spec ed aide... so she hasn't had much spec ed experience? Maybe that is it....

A.

[ALLISA]

A.,

I cried when I read your post, too ! I know JUST how you feel.....the aide definitley did NOT need to say what she did....and I cringe when I hear those things, becuase you wonder what else they (meaning the aides) leave our kids out of

I cried mostly because it is my ex-husband who has that EXACT thought & opinion of Erin ....it breaks my heart....IF he takes her out to eat....usually she DOESN"T get to go, but if she does.....he wont buy her her own meal....she gets "scraps" from eveyone else....she is MY BEST EATER......out of my three kids.....can eat anything & everyhting & feed herself....but he won't let her

It's sad enough when a teacher thinks that why.....but what about her own family ?

But getting back to your post:


I would DEFINITLEY say something to the teacher to let her know how you felt.....wait a couple of days, so that you aren't all emotional (that;s how I'd be anyways !!)

But you should tell her that you were disappointed in what she said & you had hoped that a TEACHER would have higher expectations than that.

DO NOT beat yourself up over forgetting to "order" his lunch.....this is why our school system bans all "outside food & party celebrations". It was a bad idea on the moms part & if she really wnated to do this.....should have ordered for eveyeotn REGARDLESS if an order wa placed or not.

I'm still crying over your post.....it does hurt so much when somthing like that is said......

[momofrussell]

Allisa, it was the aide not the teacher. I did send an email to his teacher though, accepting blame for my part in it, but that what the aide said did kinda hurt.

What it kinda ironic (now that I have been thinking about it for a while now today LOL) is that if you all knew me really well, you'd know that stuff like this usually does NOT bother me.Not one bit. I am very easy going with "words". I am not "PC" with words and I don't go around correcting others if they slip up once and use words out of context like the "R" word. I would rather someone BE themselves then watch what they say around me... So, for me to have this bother me is kinda funny I guess. Maybe I too have my limits. heehee... WHO KNEW!

I am glad to know I am not the only one in which it would bother. I told my husband and even though he and I are on the same wave lenght with these kinds of things, I got the impression Kevin didn't see it like I did.

A.

[ryn]

speaking as one of the aides out there....

I don't know what things are like for all of us. But I truly come to love the children I work with (spending 4-8 hours a day, every day, in the company of a child, how could you not?) and try to advocate for them as much as possible, and involve them in as much as possible.

even if they might not "get it"
because what if they really do? but just can't communicate it?

I'm sorry this happened to you and your Russell.

-me

[christie]

HUGS girl

Just curious why this woman who was a teacher is now an aide?? Was it for shorter hours??

After reading your post, I was thinking Hmmmm maybe she just was having a bad day herself and didn't think how she was wording it to you BUT I would be wondering and look into that, that is not how she really thinks. Cause if it is, what other areas does she just think "Oh he doesn't notice" KWIM?? That would worry me some. Cause in my mind any child or adult for that matter no matter what their disability should be treated with respect, weather she thinks Russell noticed or not. How the heck does she really know for sure he didn't?? Geeez Grrrrrr to her

From your post sounds like the Mom provided enough for everyone and the only excuse to me to not offer Russell a burger, cheesburger or whatever was provided was maybe they thought because you didn't specify, maybe he was allergic to something or he didn't like that type of food Was this for lunch?? You mentioned, I think that they let Russell have his regular food, makes me think you sent in lunch, maybe that was the reason?? Did you send in Russell's regular lunch? Sorry for all the ?'s, trying to find some acceptable reason, Russell was not offered what the others were.

I am with you girl, most times what people say doesn't bother me, as I don't get to caught up the in the PC language much either BUT this I find disturbing cause she works with Russell and she should, I would hope, would believe there is more that Russell knows then is able to share. I would have cried too girl.

CC

[Jessie]

This one just gets right to the heart of all of us, huh? Not wanting our kids to be excluded, especially for something like this!

I'm wondering if she had an "oh shi*" moment when you asked her about it. Maybe that was the first thing that popped into her head to say . . . which was still ignorant and hurtful, but maybe when you asked her what he did eat she then realized they excluded him and had to come up with an excuse as to why they did that.

Jason's not even my own, but I would be sad if someone said that to me. I even worry about how much we do that ourselves, not tell him something or whatever knowing he will never know. I guess I excuse that by figuring we are the parents and we want to protect him. It's tough when NO ONE really knows what they are thinking except for them and they can't always tell us (for Jason and Russell, they can NEVER tell us) and it's very sad because we don't know if and how much they are hurt by these situations.

We're with ya A.


Jessie

[Kristen]

There is no excuse for that. I voulenteer at a medical care center for kids with special medical needs dn we were decorating easter eggs and a lot of the kids really didn't get what was going on, but they seemed to have a good time with it, ya know? Well, we went into one girl's room who was asleep adn the nurse I was with (the head nurse lady there from what I can get) said she's asleep. Oh well, not like she would know anyway I stared at her in astonishment. I thought woman, you signed on for this job, if you don't have a better attitude than that do all these kids a favor and pack it in right now! That is what I think of that aide. If ou don't want to do your job well, do those children a favor and go be a cashier at the wal mart.

[Jessie]

I may have posted this before somewhere . . .

This reminds me of a story about Jason's real mother. When he was a baby he was lying on the floor shivering and he step-grandma said, "aren't you going to cover him up?" The reply from mommy dearest was "oh, he doesn't know the difference anyway". Step-grandma took care of the situation from there . . .

Guess that was a big old huge red flag of things to come for the boy, huh?

J

[Valerie]

Kristin, it's soo funny you said that. Nicholas' "educational therapist" that was coming to see him, was horrible. She would put something out for him to do, then just do it for him even though he was capable of doing it if you gave him a chance. She did an evaluation on him, without even telling us she was, then at his 6 month review, had a whole long list of stuff he could not do, and he could do everything on there but 3 things. Everyone else at the meeting was aware of this but her.

Anyway, my husband and I said the same thing...if she didn't really want to do this job, and work with kids that need the additional help, she needed to just get a job like at Walmart.

Turns out, she also works part time at Walmart! LOL.

Anyway, we asked that she not come back anymore.

And A, I'm not trying to distract from your post..I agree with you 100% that was an awful thing to say. I just got side tracked by the Walmart comment!

[momofrussell]

CC... LOL... Since Russell usually eats only Chef Boyardee micro meals, I send about 20 at a time to school and they have this tote with Russell's lunch and snack stuff. It makes it easier on the teachers/aides and I.

For todays saga, I forgot to specify which toddler meal Russell would eat. Since I didn't specify at all, he did not get one. That is what the teacher wrote on our daily form. Now, I am assuming the mom brought one for everyone but they thought since i didn't specify, it would be best for the regular meal. And truly, when I found the form today and realized it WAS today, I knew I blew it and Russell may have to eat his own meals he normally has. The Aide said he was upset his nutrigrain bar broke already so they felt it was best NOT to change anything and give him his normal meal. So.. two things... I didn't request anything so he didn't get anything.. which if the mom brought enough AND there was an extra burger, he should have been offered? And, I really think the aide knew I was sad that I blew it and that Russell was kinda left out so I think she thought her response was suppose to make me feel better. But it didn't.

She was a school teacher but after having her baby who is toddler type age now, she decided to come back as an aide instead... I will assume for lesser hours.

And I did email the teacher to try to explain and accept my part in this mess, but that it hurt what the aide said. I wrote that I know she dind't mean anything by it, but it just hurt.

Did I answer all your questions CC? LOL

Something I need to also be more in tune with... I do know that Russell doesn't notice things and is in his own little word and I too have said this to my MIL on occasions, like when she feels the need to bring home toys for all the kids... or if she only brought something for the girls... I try to make HER feel better too by saying JUST what the aide said... and you know, my eyes got opened today.. this is NOT a good thing to say.

I guess I am just beating myself up too for all this reality. But.. that is what reality checks are for. To let me know that aides shouldn't say things like that to make you feel better, and I should make sure Russell is ALWAYS involved!

Thanks you guys for being there for me Tomorrow is always another day!

a.