[tri-med] Re: I don't even know what to name this subject line....

Oh, this whole situation breaks my heart.  I'm glad you took pictures and 
documented the whole thing.  As care providers, we are required to document 
any little incident--a cut, bruise, bonk on the head, and I know our day 
centers are as well.  Elanor goes to public school next year, and I'm 
terrified something like this will happen.  I'm so glad things are being 
done.  Poor Devon, give him hugs for us.

Jennifer, mom to Arwen, 6; Elanor (t18), 4; caregiver to Joe (cerebral palsy 
& spastic displaysia), 25 & Eric, 18; and wife to Andrew
----- Original Message ----- 
From: "Penny Victor" <pvictor@xxxxxxxxxxxx>
To: <tri-family@xxxxxxxxxxxxx>
Cc: <tri-med@xxxxxxxxxxxxx>
Sent: Monday, November 29, 2004 7:00 PM
Subject: [tri-med] I don't even know what to name this subject line....


> Hello Everyone....
> Sorry for the mass mail but I wanted to give an update....um...and I'm 
> unsure how I feel about it. We've had an ongoing situation with Devon here 
> since school started this year. Some of you may remember he had a lovely 
> young woman named SaraBeth who started out the year teaching Devon's 
> class...she was very young, no prior teaching Multi kids....she had taught 
> Pre K (typical kids) and adores children....we felt that if enthusiasm had 
> anything to do with it she'd do great...although we knew there'd be a time 
> of learning for her and adjustment. Unfortunately...Sara Beth became 
> overwelmed and asked to be reassigned. I was sorry...but I respected  her 
> for recognising she couldn't handle it. She didn't feel like she could 
> effectively teach Devon or the other 4 kids.  Sooooo...then came the 
> search for a new teacher...and of course there were those 3 pesky 
> hurricanes. In the meantime he was in the care of aids with no teacher.
> OK...sooooooo Devon kept coming home with bruises and scrapes. We 
> understood that with Devon's vision and balance  that he DOES fall 
> alot....truly we did/do understand that...but we DO want to know who he 
> gets his injuries. Just a note saying Devon fell and scraped his elbow 
> today...something...anything.  Well...Devon got a new teacher...Mrs 
> Fuller. She started in between 2 of the hurricanes and like the 3rd or 4th 
> day after she started I went to an open house to meet her...it was at like 
> 6 or 7 so Joe stayed home with Devon because that's his bedtime...or at 
> the very least his crabby time right before bed. I got there...introduced 
> myself...I was the only parent to come :o( I asked her what she knew about 
> Devon...figuring I could fill her in on the blank spots....figuring she 
> had read his IEP...I was really alarmed when she chuckled and said that 
> she knew nothing about him. So I said, "well...you DO know about using 
> Thick it in all his liguids because of his aspiration proble
> m right???" She gives me a blank look...again chuckles and says "No". This 
> scared the bejeezus outta me. I show her the Thick it...the laminated 
> bright lemon yellow "Devon Do's and Don'ts" posters with detailed 
> instructions on what kinds of foods he can and cannot eat...drink...his 
> toileting needs, his limited vision...etc. Next I asked..."well where is 
> his PECS notebook...do you know what PECS are?"...her answer??? "No...I 
> don't know what a PECS notebook is...haven't seen one." OK...SO HOW HAS HE 
> BEEN ABLE TO COMMUNICATE HIS NEEDS TO YOU OR TO HIS FIRST TEACHER (who has 
> no experience with Multi kids either)???? I told Joe and myself...this was 
> not her fault...but I couldn't stop thinking that she COULD have read the 
> IEPS before she started...it was important she know about the needs of 
> each student and she knew nothing!!! AND to top it off the normal aid that 
> knew something about any of them was out her first day. OK back to the 
> injuries. He kept coming home with nasty brui
> ses and scrapes with no explanations. They never even told us about the 
> first injury....and when I would ask...his new teacher got defensive. 
> Understandable...I know...but she needed to understand our need to know at 
> least how he'd gotten hurt! Everytime I would ask (in Devon's spiral 
> notebook for notes back and forth)...the teacher's or aids' notes would 
> get a decidedly cold and defensive tone to them no matter how I tried to 
> word it carefully. Meanwhile...Devon came home with an odd large mark on 
> his arm that strongly resembled a minor burn or scald mark???? They had no 
> explanation...but when they thought further about it and discussed it 
> among themselves, they decided he could have burned it on the slide. 
> Ok...maybe. Next he came home with a wicked nasty bruise covering the 
> entirety of his kneecap...again no explanation...they have no idea how it 
> happened...according to them he did not fall??? OK...so who kicked him??? 
> Next...came a call from the nurse...Devon has falled
> backwards into a table and cracked the back of his head very hard. I'm 
> like..."he fell backwards???"....did someone maybe push him...because he 
> doesn't fall backwards...if he falls it's foward. The nurse hesitatingly 
> tells me that yes he was pushed. She said he was VERY upset...and would 
> not sit down or calm down...she said he had a knot on the back of his head 
> and he wouldn't stop crying. I tried to make myself not over 
> react...obviously a new nurse...I told her that the reason he wouldn't sit 
> down and wouldn't stop crying is more than likely because he resented 
> being taken out of his class...and being confined to the clinic...and if 
> there were snacks involved, you can bump up the upset-o-meter by 100 
> notches!!! I told her to take him back to his class room and tell them to 
> watch him VERY closely...and if he did not calm down or acted wierd in any 
> way to call me and I would come get him right away. No call came...he 
> calmed down just like I said he would...and even though I
> don't doubt for a minute he got hurt and badly...the knot she was feeling 
> was just the bone ridge on the back of his head. Still I debated taking 
> him to the ER...or the doctors...but watched him myself and he acted fine. 
> On Nov 11 he came home from school and I went to put a fresh pullup on 
> him...I was very upset to find a wicked nasty bruise in the shape of a 
> hand print...fingers only...but you could clearly see the digits of the 
> fingers...as if he'd been grabbed VERY HARD and PINCHED!!! I asked...and 
> again...they have no idea how it happened "they are aware of no 
> incidents". OKAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAY...so we're REALLY 
> starting to get mad...and meanwhile...since this school year has 
> started...Devon has started continually whining...almost like he thinks 
> this is the only way he can get what he wants/needs...he has also started 
> bawling like a baby with heart breaking tears when I put his jacket and 
> harness on to catch the bus. This is something that has always brou
> ght him great amounts of joy...tigger bouncing, giggling, and extreme glee 
> and excitement...not anymore...most days he's crying when I put him on the 
> bus. Needless to say Joe and I have been worried sick about him all day 
> every day :o(
> I kept trying to tell myself I was over reacting...being ridiculous...I 
> didn't want to get a reputation of being a trouble maker...so I kept 
> trying to handle it without going over the teacher's head. I was also 
> afraid that if I did make a formal complaint that it would be our word 
> against theirs and I was afraid they would either treat him bad or 
> worse...or maybe even call children's services in an effort to beat us to 
> the punch if they were afraid we might call them ourselves. If someone 
> came and took Devon out of school or out if our home it would destroy me 
> and Joe...and Nick...and who knows what would happen to Devon??? BUT...a 
> week ago last Friday came the last straw. I went to get Devon off the bus 
> and his aid told me he had wet himself. And I'm thinking to myself...how 
> do you know...he's wearing a pullup??? I look at Devon's shorts and sure 
> enough...he's soaked...looked like he'd been sitting in a saddle all day 
> and the whole crotch and inner legs were soaked??? OK....
> so now I'm really puzzled...I've never known his pullups to leak in that 
> manner??? I got him in the house and told him to get up on the couch so I 
> could change him and I pulled down his shorts...imagine my surprise when 
> "THERE'S PETEY!!!" He wasn't wearing a pullup!!! Now please tell me...how 
> does one FORGET to put a pull up on a little boy whom you've just taken 
> one off of???? Ran out of pull ups you may suggest??? NO...I had just sent 
> them and they were clearly marked as his. Even if we had run out of 
> pullups...there are others there...Lord knows Devon's have been used for 
> other children!!! Heck I donated like 6 cases to them during the storms 
> because his school was used as a shelter. True...the ones I donated were a 
> little snug...but they still could be used in a pinch.
> I called Mrs Taylor...the principal...I told her everything that had been 
> going on. I told her how the notes implied new aids everyday was the 
> problem...Mrs Taylor told me today that the aids have not been changing 
> daily as was told to me by Mrs Fuller. She was always blaming an aid...but 
> she always had to "see who was on that day". I also haven't got the first 
> accident report...HECK! I don't even have his first report card and it's 
> over halfway to the second one!!!!! On Sunday...I sat and wrote a long 
> letter and told her we were basically done being quiet and trying to 
> handle this without ruffling feathers...I also emailed her pictures...as 
> I've been taking pictures and recording dates of injuries and the nature 
> of each one. Today she called me as soon as I got home. Keep in mind when 
> I put Devon's jacket on him and harness this morning he bawled like a 
> baby...he was still bawling and crying big real tears when I helped fasten 
> him into his seat....when the bus pulled away th
> is morning I was bawling too :o( Mrs Taylor told me she was 
> worried/troubled after my phone call...forgetting to put the pull up on 
> also really bothered her also...and the pictures REALLY bothered her. She 
> had already made the decision to talk to Mrs Fuller today...but my letter 
> put her over the top...and by the way...Dana...Devon's med waiver support 
> coordinator has been kept abreast of these things and she told me to write 
> to her so that our concerns would be documented. She said she thought 
> maybe we have a negligence/abuse case...neglect at the very least. 
> Well....Mrs Taylor told me that something IS being done!!! She said that 
> she went and spoke to Mrs Fuller today and that she is resigning and her 
> last day will be Thursday. She also said she took the letter and pictures 
> to the next level up...district...and showed them and asked how she should 
> proceed. They advised her to call and make a sheriff's report so that in 
> case anything else happened it would be documented...th
> is is what Dana was aiming for having done as well. She wanted me to know 
> in case the sheriff's dept calls ar comes to talk to us...she didn't want 
> us to freak out. She said that she will be asking Audrey to take Devon and 
> his 3 classmates for the remaining 2 weeks before vacation and that she is 
> interviewing a teacher and aid (I had the impression it was a package 
> deal???)...she would not tell me who it was and kind of implied I may know 
> who it is...but I have no idea who it is...though I wish it was Kris :o)
> Sooooooooo...this is what's been going on around here....I have a headache 
> the size of this planet...but I feel better having reported it and even 
> though I really didn't picture anyone resigning....I have no idea if it 
> was voluntary or if she was asked to???...but I feel a little better about 
> Devon's well being. I'll keep ya all posted....
> Love,
> Penny...loving and devoted wife to Joe, the best husband in the 
> world...mom to Nick (14 yrs old...lover of Dragons, Turtles, Yu Gi Oh, 
> RollerCoasters, Chocolate Icecream with Ovaltine sprinkles, Devon (9 
> yrs...lover of Barney, Blue, Bear in the Big Blue House, Elmo, Stuart 
> Little, Teletubbies and food in general...Full trisomy 13 w/balanced 
> translocation 5 and 13) , and Trooper the Wonder Dog...our 6 or 7 year old 
> male yellow lab adopted from FL Lab Rescue 12/13/02 :o)
> Please visit the webpage my wonderful friend Karen made for me on our 
> trisomy listserv at...
> http://www.trisomyonline.org/victor.htm
> AND...Devon's moment of glory in Exceptional Parent Magazine...
> http://www.eparent.com/familiarfaces/ffaces_4_01.htm
> AND...see our 3 handsome boys on FL Lab Rescue's website at:
> http://www.labradorrescue.net/success/index.html
>                  Building ___ooOOoo__ Rainbows
>                       www.trisomyonline.org
>                  Families Helping Families On-line
>
> 


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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