[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 problem 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 bruises 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 brought 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 this 
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...this 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

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