Re: Re: totally frustrated-Leigh

[Guest guest]

Hi Leigh -

Josh is 10 1/2 yo - been dealing with this stuff for a long time now but have

never had as much problems as the last three school years.  When Josh was

little, we lived in a little town and everyone knew everyone.  Everyone knew

Josh - we had been really involved with our Easter Seals and he was actually the

Little Ambassador when he was about 4yo.  I'm also a lawyer and, not that this

should have made a difference, but I think the little school district might have

been a bit more accomodating than the one we're in the last three years simply

because of what I do (although I only do criminal law but sometimes being a

lawyer does carry a little weight).  After the ex walked out and the divorce

finalized, Josh and I moved back to a Chicago suburb, closer to family, and into

a system that I thought would have more opportunities for Josh.  Boy, this has

been the biggest struggle - so much so that I'm really tempted to move back! 

The first year up

here, they had Josh in a classroom for severely autistic children.  When I

learned that's what the classroom was before school started, I started fighting

to get him moved - only to go up against brick walls for the entire year. 

Fortunately, his teacher realized early on he was in the wrong placement and she

did her darnedest to make things work for Josh. You're right that the diagnosis

sometimes does not mean much, it's really whether the child is getting the

correct services.  But, when you've got a kid who learns by watching those

around him and by rote, he was learning behaviors that were frightening to

everyone (except the Dist. people!) - there were kids in that classroom who,

because of their own issues and severe/profound autism, were either totally

silent, or others who literally knocked over file cabinets and desks, and who

threw shoes at the teacher and pushed her down!  At the end of the school year,

the Dist. finally agreed it " might

not have been the appropriate placement, " and they moved him to what used to be

called a multi-needs classroom - very much like what he had been in in the

little town - the teacher related to him, she was great with him, the aides were

wonderful, we had a really good working relationship and Josh did really well

academically and socially. 

Then this year, he was moved into an adjoining multineeds classroom (the names

have changed - it went to MI (for mentally impaired), and now its CD (for

cognitively delayed)) with a different teacher that he knew, but with one aide

in particular that Josh has problems with, and who, of course, was sort of the

" dedicted " aide to Josh.  None of the aides are doing anything that has been

suggested by me (the suggestions coming from the clinical social worker Josh

sees), it took over a year (the fight started last year) to get sensory based

individual OT going (they had him in a group OT/PT session and it wasn't until

almost the end of last year that I found out that it had taken until February to

just get Josh into the OT/PT room - I kept asking how it was going and all I got

was " he's coming along " type comments) so now he's got that as well as the

OT/PT, it took all of last year to talk his speech therapist into doing his

individual sessions really

individually rather than in the classroom where he's distracted all the time,

it took until this year to get them to use a baffle to block off Josh's work

area when he needed to really focus on academic work, it took until November to

get them to use, consistently, a slant board for his work, and it took until

November to get them to use the weighted vest and pillow (he had been using it

in the little town with great success and no one listened to me in this larger

system that it really did work - it took a major aggression episode for them to

finally agree to " try " it and, gosh, wasn't Mom right?). 

When I started getting suggestions from the social worker, I immediately

contacted the head of special services and said I would like an IEP to go over

the suggestions and get them going, and discuss using a different aide for Josh

because, after what was described to me as  behavior by the aide that was

totally inappropriate for a kid with sensory integration dysfunction (if not any

kid!), I suddenly had a son who didn't want to go to school and who would have

tummy aches every morning - clearly something was not right!  I got put off by

the special services woman and the aide started rotating more with another aide

that Josh did well with so I let it go, then the holidays came in.  So, this

past month, I've still been sending all the suggestions from the counselor and

have kept being told " oh, we haven't started using that yet " whenever I asked

about something.  Tomorrow we have Josh's conference and the teacher set aside

75 minutes for us.  We'll

see what we can accomplish.

You are absolutely correct, though, that having a special needs kids is a

full-time job in itself!  I work in criminal appeals for a state agency, putting

in my hours during the daytime and making up whatever I may miss (taking care of

Josh-related issues mostly) by working at home in the evening after he goes to

bed.  The ex just doesn't do his fair share of any of the Josh stuff - he shows

up at the IEPs and, as Josh's teacher said last year, he " swoops in " as if he is

the " great fixer " when, in fact, everyone knows he barely sees his son - the

Dist. people sort of think he's a joke and don't take him very seriously.  The

ex doesn't participate in Special Olympics, doesn't even go to Shriner's anymore

for Josh's med appointments, never has taken him to a therapy session - so it

pretty much all falls on me and, quite honestly, there are times I'm simply

exhausted.

So, that's why I appreciate the patience of everyone at this group - I think

everyone here over the last 6 or so years since I started coming here, has had

at least one or two moments of  utter frustration - and everyone can relate to

it, and everyone is very understanding.  So I thank you for the suggestions and

your " ether " shoulder - I hope I can reciprocate at some point - or maybe I

don't hope that??? ;-)

Thanks Leigh! 

Sherry and Josh

________________________________

From: BodegaLee <bodegalee@...>

Sent: Wednesday, February 4, 2009 3:32:17 PM

Subject: [ ] Re: totally frustrated!!!

Hi Sherry

I'm so sorry you're going thru all this. I havent been a member of the

board too long so my thoughts might be things you've already BTDT. I

swear raising a SN child is a full-time job in and of itself, with all

the f/up that needs to go on. One thing that has helped me is to be a

big enough pain that they don't blow me off (if that makes sense) AND

we've had pretty good luck. I generally write the IEP and meet with

the team before the official meeting so they have some idea of what I

expect. CAUSE after all, we... the parents are the most important part

of the team. If you feel they arent following thru with things that

will help your son function more comfortably (he and the others) in

the classroom, then maybe it's time to call the whole IEP team

together and figure out why? You mentioned " sensory issues " - what

does the school OT say about this? Is he getting enough sensory

breaks? Does he need more input (if he doesnt wear a vest, is that

something that should be tried?) Does ha have enough resource time?

Sorry not sure how old Josh is.. But sometimes a little extra support

away from the larger group (if resource is good with him) might be an

option? Let them to do their behavioral plan but you may want to

consider calling the team together afterwards and getting everyone on

the same page cause it sounds like the right hand doesnt know what the

left is doing (if I'm interpreting correctly? And apologize if I've

made incorrect assumptions here). And re: a Spectrum dx... while dx's

are sometimes really important - where the school is concerned (of

course in the perfect world ) the IEP should be written based on the

child's needs, not a dx. Josh may have some overlapping issues with a

Spectrum dx but that doesnt matter to the IEP.. Ultimately his needs

need to be defined, and services provided to address the needs. Often,

I realize, easier said than done cause one person's objective opinion

often differs from another AND the right dx and trends for services

can be helpful... I wish you the very best.

Leigh

> >

> > Hello -

> >

> > I am so completely and utterly frustrated!� Josh was having

> aggression problems at school in October, we (my ex and I) met with

> school folks to deal with it, school said they were going to do a

> functional behavior study on Josh (we shrugged out shoulders and said

> good luck - you've got a kid with sensory integration dysfunction and

> you're hoping to find a pattern?� there are some things that will

> always set him off - someone too close, loud noise, etc. - but,

> really, it can be something new or different, or something that

> hasn't set him off before if he's having a bad day for some other

> reason that they don't consider - we all know what I'm talking

> about), and my ex suggested taking Josh to a counselor.� Bear in

> mind, I've made so many suggestions to the school with strategies

> that I use at home that work pretty much all the time, but no, most

> of them don't get implemented at school.� So, I started taking Josh

> to a counselor in November.� Since

> > then, he's made many suggestions (a lot that I had already made,

> many that are new) and I pass along all the suggestions in an email

> to the teacher, the school psychologist, and my ex - I write the

> emails the day of sessions so that I can remember all that we talked

> about during the sessions.� Then, I try to follow up with notes in

> Josh's notebook that goes home/to school everyday.� Well, today, the

> doc said he had a message from the school psychologist asking to

> speak with him to get ideas of what to put in a behavior plan for

> Josh.� AAARRRGGGHHH! !! What does she think I've been doing all this

> time???� I feel like I'm talking to a brick wall!� I don't think a

> single thing I've written about that has been discussed with the doc

> has been implemented at school!!� I've tried to check up on things

> all along and I get the " oh, we haven't started that yet " line -

> since November!!!!� What is with these people???!!!

> >

> > And, the ex and his wife wanted to meet with the doc - without

> Josh - and no one could figure out why.� Bear in mind, there has been

> a neurologist, a psychiatrist, a psychologist, this counselor,

> teachers, and other therapists (speech, etc.), who all agree Josh

> does not have autism - he has never been placed on the spectrum.� The

> ex has convinced himself, notwithstanding all these professional

> opinions, that Josh really does have autism - that's one of the

> things they wanted to talk to the doc about.� He again told them Josh

> does not have autism.� (the ex, when Josh was little, convinced

> himself Josh had CP because Josh, when excited, brings his hands up

> into " high guard, " which we were told was a developmental thing -

> every single doc we ever saw told the ex it was not CP but it took

> him almost 5 years to finally let that one go).� And, the ex's wife

> told the doc she feels she has a " special connection " to Josh - keep

> in mind the ex cancels his

> > afternoon�visits (when he simply takes Josh train-hunting in his

> car and�gives him dinner at my house)�all the time, and he has Josh

> for, usually, one overnight visit every third weekend so he doesn't

> see Josh very much which means the wife sees Josh even less so what

> the heck kind of " special connection " can there be???� I asked the

> doc whether�the wife�explained what the " special connection " meant

> and he said she didn't and he didn't know what she meant either.�

> And, even though she has this " special connection " with MY SON, she

> needed to ask the doc about other strategies she can use to help

> Josh.� OK, I'm all for all of us being on the same page but for

> cripes sake, I send the same email to the ex as I do to school,

> listing all the strategies the doc suggests at everyone of these

> sessions!� Again, what is wrong with these people!!!???

> >

> > So, I'm totally frustrated with everything right now!!!! I know I

> just need to go take a walk, take a deep breath (OK, a lot of deep

> breaths!), and have a cup of chamomile tea, so I thank everyone for

> letting me rant for these few minutes!

> >

> > Sherry (and Josh)