Autism Community Connection
Autismcc Yahoo Group Responds!
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s so
that together we may share our wealth of collected knowledge and insight.
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groups.yahoo.com/group/autismcc/
Topic:
Eligibil=
ity/Placement
IEP
A
common theme at our Autismcc group is the IEP, our rights as parents and ho=
w to
handle oneself through the process.
Here are many replies on these issues:
One
parent was frustrated over not being able to see the various placement opti=
ons
before having the initial IEP meeting.
Marie
said,
Regarding not seeing the class befo=
re
the eligibility/IEP meeting, you should fight back on that. Our school
district said the same thing to us and I said that made no sense not to
see the options before the meeting. They said that was their policy and that
they would evaluate her first and then tell us which class she belonged
in, if she qualified, and then we could see it.
The specific language I used (after
talking with someone who has been all the way through due process) was that=
we
as parents took our role very seriously about being a part of her IEP =
team
and we could not be effective members of the team if they were not letting =
us
be fully informed about the options and able to truly participate.
I also know from experience with our
son, that these IEP meetings can be overwhelming. It was even worse than a
'normal' IEP meeting in that they were cramming in the evaluation,
eligibility, IEP goals, and placement all in one day. So in order to succee=
d in
that setting, you really have to know what you want ahead of time for your
child and put together a plan to get it.
They called back a few days later a=
nd
said we could visit both of the main options, the autism room and the Early
Childhood room. After seeing both and hearing the specifics, it gave u=
s a
lot more information and allowed us to make an informed decision. They had =
one
hour with our daughter - we had the best knowledge of her plus lots of time=
to
discuss it with her team.
We also had our daughter in group
therapy in the months before she aged out of EI. This actually gave us more
ammunition to use to get her in a smaller classroom (the autism room has 1:1
aides, special ed teacher, ABA, full time speech therapist, and quite a bit=
of
time with OT & PT). Her EI therapists (four of them) and our EI casewor=
ker
all came to the IEP meeting which was great, and they were able to say much
better than we were, that in their professional opinion she needed a
smaller group setting. We also provided our two independent
evaluations/diagnoses.
If the school is already fighting y=
ou
and feeding you misinformation, then you might want to consider bringing an
attorney with you from day 1. We gave our district a chance and they were
wonderful, but if they didn't pick the placement we wanted for our daughter,
there was no way we would have signed the IEP and would have gone for an
attorney.
Laurie said,
Remember that, by law, placement is
always the LAST decision to be made in an IEP process. Your child's N=
EEDS
drive the GOALS which in turn should drive the PLACEMENT.
Trying to squeeze an initial eval,
writing goals, and placement into one meeting is A LOT for one
meeting. But if this is the case then by all means you and your
husband need to see all of the classroom options available prior to your
meeting, otherwise how would you be able to make an informed decision and b=
e an
active participant on the team?
As a parent, though, it can
be tricky to see the 'places' before the IEP meeting
where we discuss needs and goals. I remember, myself, many times =
in
the early years, seeing a self-contained classroom where the teac=
her
seemed very warm and welcoming v. a regular ed teacher who seemed
frightened or resistant by the prospect of my daughter being in her class.&=
nbsp;Or
I was influenced by the functioning levels of the other kids in the classro=
om,
or that one classroom had a speech path full time and another setting
didn't. I can remember thinking along these lines as I headed in=
to
the IEP meetings -- something like -- "Well, if my daughter goes =
into
THIS room, then we could write a lot of speech and language goals; but if s=
he
goes into THIS OTHER room/place, then we could write a lot of social
goals." Like it was an either/or proposition!!
I've even lived in districts before
where they insisted I go and see the available 'placements' before the IEP =
and
decide which one I 'wanted'; then during the IEP we'd write the goals and
objectives based on what opportunities and services were already assigned to
that room (i.e. 'she can only have ___minutes because that's all the time t=
he
SLP is only there 2 days/week).
I saw nothing wrong with this appro=
ach
for several years, until one day someone explained to me how unfair this wa=
s to
my child because we weren't starting the discussion from her NEEDS, we were
starting from what the district said they had AVAILABLE.
I was trying to fit my child's
needs into a program vs. developing a program to meet the needs o=
f my
child.
I was making my CHILD FOLLOW THE
SERVICES vs. expecting the SERVICES TO FOLLOW MY CHILD.
To help avoid falling into this tra=
p,
here are a couple of strategies that worked for me when doing classroo=
m or
'program' observations:
1) Prior to making any
visits, decide on my own top 3 highest priorities for my child in=
the
coming year (what do I most want her to learn how to do -- include
social/communication, daily living/personal care, & academic).
2) When you go into a school =
or
classroom, be looking to see what range of ACCOMODATIONS and TEAC=
HING
STRATEGIES are being implemented? Take some notes and
bring them to your IEP meeting. If, after discussing needs and
goals, you & the rest of the team feel that they require certain kinds =
of
adaptive equipment, teaching materials, or knowledge of specific teaching
methodologies, then you'll have a better idea as to whether purchases or st=
aff
training needs to be written into the IEP in order to meet your child's nee=
ds.
3) As you're observing,
especially in a general ed setting, it's easy to get caught up in thinking =
'oh
my gosh, my child could NEVER keep up in this classroom'; if you catch your=
self
thinking that, try reframing that thought to 'what supports would my child =
need
to be successful in this environment?' or 'how could my child's top 3
priorities be worked on in this setting'. Not could they, but HOW cou=
ld
they. See the difference?
Now maybe this is just me, and you
won't experience any of the above situations! But if you do, that's h=
ow I
was able to stay focused on my child's needs and goals while at the same ti=
me
looking at the placement options prior to the meeting. Oh, and also
remember, you start by looking at the LEAST RESTRICTIVE ENVIRONMENT first; =
then
go progressively into the more restrictive. That's how the discussion
should go, too, at the IEP meeting. And if the team doesn't
start the placement discussion by considering whatever is the least
restrictive option, you feel free to just go ahead and redirect
them!
Holding =
Child
Back a Year
A
parent said,
“Our
daughter’s teachers asked if we wanted her to stay another year in
pre-school or go on to kindergarten where she would be mainstreaming with an
aide for help. Now they are s=
tating
this is not their recommendation. I
really would like to giver her another year as she still is not verbal, has
feeding issues and is not fully potty trained. What criteria is there to
mainstream?”
Christy said,
It may be better for your child to =
be
integrated into Kindergarten but that depends on the supports in place.&nbs=
p;
The fact that she can’t talk verbally (I'm assuming she is using PECS=
or
sign language) makes me curious how they are proposing integrating her.&nbs=
p;
Because there is a push for integration these days sometimes they err on the
side of integrating but it's so important for supports to be in place (full
time, one on one aide, visual schedules, sensory breaks, OT/ST, behavior
supports, etc.) It may help her to be with age appropriate children to
help model behavior for her. I would definitely find out what changed
their mind. If you have a good relationship with her teachers ask the=
m if
something changed.
Our son is staying in the pre-school
program but that is because he is full time in a communication class that
focuses on speech issues. When he gets to Kindergarten he will go part
time to integrated Kindergarten and then the rest of the time in the
communication class. When we get to 1st grade we'll be able to decide=
if
we want to try integration full time then or have him go into a
multi-needs class.
Gloria replied,
My daughter was held back and start=
ed
kindergarten a year later. Be=
cause
she moved to a new school district after first grade, we also had her redo =
1st
grade since no one would know and she was fine with that. She is now done w=
ith
school and I have never regretted the decisions, because it gave her time to
catch up developmentally and be close to the same level as her peers for a =
few
years (eventually they passed her by as she has a developmental disability).
She was not mainstreamed so I cannot respond to that. I am strongly in favo=
r of
holding kids back in the early years (some typical kids benefit from it als=
o)
to give them a chance to be as ready as possible. I say follow your own
instincts as to her preparedness, especially if it can be done without peers
being aware that she is held back.
Katherine advised,
I did not hold my son back and I'm =
glad
I didn't! Even though he has =
the
social issues of autism, cognitively he was ready for kindergarten and star=
ted
this past Sept. It has worked out fine.
Heather
suggested,
We held our daughter back when she
returned to her home school district after being privately placed for 3 1/2
years. She really had no stigma because she was gone for so long and no one
really knew she was placed one grade lower (into 4th instead of 5th). One thing I would highly recommend=
is
trying to get "double
kindergarten" in one year. This
would have been a real benefit for our daughter as she needed routine and
repetition. Our district only offered it after having been through regular =
1/2
day kindergarten and then not thinking she was ready for 1st grade. She is =
in
inclusion, spending about 1/2 the time in the classroom and the
other 1/2 in other various
rooms/activities.
Dawn
replied,
Ask yourself, will keeping your chi=
ld
back a year help her for the rest of her
elementary experience or just in th=
at
grade? Depending on her areas of difficulty, going over the same material m=
ight
only help her do better the second time around in the same grade. The follo=
wing
year would be a whole new
experience and she would still
struggle.
My son was in Early Intervention so=
the
day he turned three he entered pre-k.
Because of his birthday (end of Sep=
t)
he ended up being in pre-k for three years. We called him "grandpa
pre-school" because he was there so long and doing the same stuff. I
really wish he could have entered Kindergarten a year earlier. He does well academically, it's ju=
st the
social/communication part that is the challenge.
Sandra said,
When my son was turning five and all
his peers from preschool were getting ready to start kindergarten he was, l=
ike
your daughter, not fully potty trained (something that's really common with=
our
kiddos). Though you'd think this wouldn't be an issue, kids seem to be more
aware of these types of things much earlier (in other words, I didn't want =
my
son to be teased for possible wet pants in school. That kind of stigma can
follow kids throughout their school years, so it's
something to seriously consider).
I kept him in preschool for an extra
year (with a speech therapist who came to the preschool to work with him
regularly) and it gave him time to catch up a little. The regular school had
explicitly stated that all children must be potty trained in order to attend
kindergarten. By the next yea=
r he
was completely potty trained, his verbal skills had grown, and we started h=
im
in a mainstream kindergarten class where he continued working with the same
speech therapist and had a one-on-one aide in class. This actually worked o=
ut
better for my son since he's always been physically much smaller than other
kids his age.
Test
Retakes – Not Following Accommodations/Modifications on IEP
One parent had a son who did poorly=
on
a science test:
The test covered eight weeks of
material and was extremely difficult. His IEP includes `study guides,' help
with note-taking, extra time, a quiet place to take the test, etc., none of
which was in place for this test. We asked for him to be able to
retake the test, and got major
resistance from the teacher. It was kicked up to the principal and the dist=
rict
rep, and we had to write e-mails and have a two-hour meeting with them befo=
re
they finally agreed to let him retake an equivalent (but different) test. He
got an A- on the retake.
I was discussing this with someone =
at
work who has two mainstream kids who receive special education services, an=
d he
said if his daughter does poorly on a test, she just signals her special ed
counselor that she wants to retake it, and she's allowed to. She's categori=
zed
as LD, and is in high school, in a different school district than we are.
Janine
wrote,
My son takes the written test, but =
then
the teacher and/or aide go over it orally with him on things he missed.&nbs=
p;
He has a hard time getting things on paper, but knows the information.
Sometimes they just have to reword the question.
Dawn suggested,
During your monthly meetings with
school staff, find out which tests are coming up and how it will be
modified. Send an e-mail to t=
he
specific teacher if there is any material that can be brought home to quiz =
your
child ahead of time. Reiterat=
e to
the teacher the need for extra time, quiet place, etc. I’ve reminded the
“non-homeroom” teachers of specific accommodations if my child
tells me she is having a difficult time.&n=
bsp;
The teachers seem more than willing to help. Even though I’m told that th=
e list
of accommodations goes to the staff I don’t think everyone gets it.
Behavior
Plans
Marie said,
It is not too early for a
behavior plan if your child is in an early childhood class. It sounds
scary, but in reality, it is good for both the school and parents to have a
plan in place.
What will happen is, a number=
of
scenarios will be created and how each of the team will react. S=
uch
as, if your son starts to run around the room, he will be asked to come bac=
k to
the group and after being asked three times to come back, if he doesn't, he
will be put in "time out". The good thing about the
parents being involved is you can veto their stated handling of
behavior or add something that might help to avert or explain the
behavior. To use my previous behavior as an example, you might
know your son runs around when he needs to use the bathroom. In =
that
case, it isn't really a behavior but communication of need. It can be=
an
"Oh, never mind" part of the IEP! In some districts, a beha=
vior
plan is just a stated method of learning such as behavior modification
(ABA). Most likely, they have noticed behaviors that concern them and
want to have a plan in place.
Sometimes, the school puts things in
the behavior plan that make no sense. One year, I was made to swear to
pick up my son when he was having a bad allergy day--and the school insiste=
d it
be put in the IEP. If this ha=
ppens,
you can refuse to sign off on it.
We
had some posts expressing concern over behavior plans:
Christy said,
I agree with this to an extent
but you have to be careful of what is behavior and what is sensory
induced. My aspie is having a terrible time in Kindergarten but =
we
are finding, as we are getting more details, that many of his behaviors are=
due
to the school not being aware of sensory issues. As a
parent we can't be there several times a day for several days observin=
g if
these are real behaviors or sensory so that is where you need to bring=
in
a consultant. I would just hate to have the child labeled a beha=
vior
problem at age 4 when it may just be that he needs more visual cues and sen=
sory
breaks. I would definitely do a functional needs assessment and then =
see about bringing
in a behaviorist who has experience with sensory needs before jumping into a
behavior plan.
Mary said,
I think based on what you describe =
that
it's really important to get all the supports and modifications that your s=
on
needs in the IEP, including an aide. Make sure that you are working with th=
e OT
and that 'sensory diet' is specified in the accommodations page, and
sensory/snack breaks as needed. That is really important!
I've found that if my son (9yo
Asperger's) had the appropriate breaks there really was no need for any
behavior plan. The one time in his school career that they tried to put him=
on
one was when he was in 2nd grade and the teacher just didn't understand
Asperger's and what he needed. We finally got him a 1:1 aide and things
improved dramatically right away.
Marie
clarified over these remarks:
I have been confused about the
reactions here on ACC to forming a behavior plan. It sounds like several have not had
experience in a good behavior plan and can only imagine it to be a bad thin=
g.
A good behavior plan does not focus=
on
"punishment" but how to avoid undesirable and disruptive behaviors
before they occur. A good school district will suggest a behavior plan when
they believe behavior is interfering with learning. "Punishment" may be a pa=
rt of
the plan but I would be surprised because most behaviorists know
"positive" re-enforcement is much more effective than
"negative" re-enforcement (punishment).
Both ladies are correct that a sens=
ory
issue may be at the cause for behaviors--and a functional needs assessment =
may
be part of the district's plan to uncover what could be the issue. The
assessment would probably be done this spring and the plan implemented in t=
he
fall. Most of Mary's suggestions as to what
worked with her son are very good--=
1:1
aide, especially. I would also
suggest having a notebook that both you and your son's teacher would write =
in
daily, back and forth, that would remain in his backpack. Especially, for t=
hose
of us with children with more involved language issues, it is important to =
know
what happened in school, as well as for the teacher to know what is happeni=
ng
in the
family. Some teachers have photocop=
ied
forms they use when they don't have time to really write.
I have been on both sides of the ai=
sle,
so to speak, and as a parent and an educator, I can tell you some universal
truths.
Labeling a child as a "behavior
problem" is very old fashioned and not accepted in the special educati=
on
community. A district who labels a 4 year old, with a dx and an IEP a
"behavior problem" has a problem, IMHO. Watch out for them and wa=
tch
your back.
It is much easier to shape a 4 year
old's behavior than a 14 year old's. The techniques and strategies used
successfully now can be adapted and used all along the way. We, as parents =
of
those on the spectrum, know there are challenging behaviors and they only g=
et
more challenging if not addressed.
We, as educators, can set children =
up
to succeed, to give them the best chance to do well. We can also set up
children to fail. I tell my fellow music educators I know this to be true, =
both
with my own son and my students through the years.
There are problem behaviors, not to
label a child as the "problem" but the behaviors that interfere w=
ith
learning. It is the district's and educational team's duty to get to the ro=
ot
of the problem. The parent can be a big help in getting to the root of prob=
lem
behaviors and, while it is sometimes difficult, it is a good
idea to observe your child's class
occasionally. I used to make time twice a year, once in the fall and once in
the spring--it was worth it. Is the problem sensory? Is it something else? =
Such
as--all of us who have children with accurate internal clocks are bracing
ourselves for this weekend when we "spring ahead". I know
it's coming, but do your children's
schools realize it could affect behavior for a good portion of next week? We
can drink an extra cup of coffee, but what about the kids?
Mary replied
I know in theory that a Behavioral =
Plan
isn't necessarily a bad thing, but in our case, yes, it was a very negative
experience and the intent was to focus on the behavior and the consequences
(and yes, punishments!), rather than trying to understand where his behavio=
rs
were coming from. My son needed breaks and they weren't allowing him to lea=
ve
the classroom. His teacher also expected instant compliance with frequent
transitions and he needed additional time with transitions. These are just =
two
of the issues, and were directly related to his disability. They
didn't understand Asperger's and felt that because they couldn't see his
frustration building (he seemed perfectly fine on the surface) that he was =
in
complete control. I think they also correlated his very high intelligence w=
ith
the ability to control himself and his frustrations.
The Behavior Plan didn't help at al=
l -
in fact it escalated the behavior because it didn't address the underlying
issues. That's my biggest concern when I hear the term 'Behavior Plan.' What
did help tremendously was going to a seminar on Asperger's taught by Tim
Kowalski, who was just wonderful and being able to go with the Principal an=
d an
OT to the seminar. Getting the 1:1 aide and building in other
supports/modifications over time, has also been really helpful, as well as
medication.
We just had my son's IEP meeting to=
day
for 5th grade and everyone was glowing with praise for how well he is doing
academically, how well-behaved, etc. and I really give credit to his team f=
or
really trying to understand what he needs.
Getting
more OT/SLP minutes in IEP
A parent said her pre-schooler only
gets 20 minutes of OT and 20 minutes of SLP a week.
Kristin said,
Regarding your non-verbal child
receiving only 20 minutes a week of speech therapy in school:
Speech minutes are supposed to be b=
ased
on ASHA guidelines. I have never looked them up but you should be abl=
e to
find some information at www.asha.org or get assistance by calling someone
there. I imagine that the guidelines would require more than 20 minut=
es a
week for a nonverbal 3 year old. Once you have that info, write a letter to
your case manager requesting that your child's speech minutes be increased =
to
whatever the ASHA recommendation is. Tell them that if they decide no=
t to
increase it you want a letter of prior written notice explaining upon what
criteria and evidence they are refusing your request. See
www.wrightslaw.com for more information on "prior written notice"=
and
sample letters requesting program/service change.
The one question I did have about y=
our
post was whether or not the 20 minutes is all the speech therapy your
child gets or is it that s/he=
only
gets 20 minutes of individual, pull-out therapy? If the latter, it is=
the
total minutes that count and delivery method has moved much more toward the=
use
of push-in rather than pull-out services. In that case, you just need to
negotiate with your district.
Marie replied,
it sounds like you really need to
reopen the IEP.
You don't give a lot of details but=
is
the pre-school through your school district? Your services for a nonverbal
3.5yo child don't seem anywhere adequate.
Is your child diagnosed with autism=
and
that's all they gave you?
My daughter dx mild 'classic' autis=
m is
also 3yo and is in an autism program - max 6 children, all with 1:1 aide, p=
lus
co-taught by special ed teacher and speech pathologist, also OT five days p=
er
week, PT, etc. It is five days per week and about five hours per day. The
district picks up and delivers home on a special school bus. ABA is integra=
ted
into the program. In the five
months she's been in the program, she has really come a long way - becoming
more verbal and dramatically more socially aware.
Jennifer
suggested,
I'm not sure if your pediatrician is
helpful in this regards, but I had my son's psychiatrist and pediatrician, =
and
outside ST write a letter of referral to the schools asking that they conti=
nue
him with 1 hour per week of each therapy. The school agreed on this, =
and
the therapies have since continued.
ESY R=
11;
Extended School Year
Dawn said,
I always request that ESY be includ=
ed
in my kid's IEPs with the option to not participate if I so choose. I menti=
on
that I sign up my kids for other therapy sessions during the summer. If it
looks like I don't have a lot planned I have the kids attend ESY. If I think I've got a great summer
program going on my own, then they don't go. I never want to tell the schoo=
l to
take the ESY off because I feel that once I do that, it would be difficult =
to
get it again.
Don't feel locked into an ESY. You
might have one day of the week that you
schedule all your therapy sessions.
Your child can do ESY three days a week instead of four so your schedule is=
n't
overbooked.
Jenn
added,
I do the same, but I think I look a=
t it
a bit different. Here, especially with outside therapies like OT and =
ST,
it may be inconsistent. I.e. he's hit a plateau, so we take a break f=
rom
it, but then when we return, we only find out that the therapist has left, =
or
is on maternity, etc....
With ESY, I think it's especially
important to keep this as a primary part of your child's summer, as it a) w=
ill
likely be the same therapist as the following year, and b) keeps consistenc=
y in
going to school, even if it is located at another school, and c) gets a fri=
end
or two of his or hers together, so as to continue to build on that relation=
ship.
I always opt for ESY, and then plan around that.
ESY vs P=
ark
District Camps
Debbie said,
It is great that you have ESY as an
option, but do consider other options as well. I'm not sure what ESY is lik=
e in
your school district, but this is what it is like in our district: Only
children who are likely to regress during the summer qualify to attend, so =
the
level of functioning is significantly lower than during the school
year. Although we have not attended,
from all reports I hear that the ESY curriculum and therapy doesn't even co=
me
close to what is offered during the year.
You might consider going to a typic=
al
camp with a special needs aide. All park districts in IL have a special
recreation program (the local ones here are Western Dupage Special Recreati=
on
and Fox Valley Special Recreation) that will provide a one-on-one aide free=
of
charge to attend daily camp or other classes with your child. The aids all =
have
special needs experience and are wonderful. It may be
just what your son needs.
Jen added,
The park district camps DO take into
account whether or not your child is in a special education class or regular
mainstream class, whether or not there is a 1:1 aide, what the child has mo=
st
difficulty with (is the child a flight risk? A runner?
Aggressive?), and they CAN deny your child for a particular camp.
Jennifer said,
With park district camps one has to
consider the fact that regular camps can have upwards of 30+ campers, and g=
et
together with other camps during a special field trip event, so if your chi=
ld
is leery of large groups, that wouldn't be the better choice.
As far as ESY goes, the ESY is, BY =
LAW,
required to provide everything on your IEP in terms of therapies, and is
required to follow the same benchmarks. It may not be the same therap=
ist
your child had during the school year (as they all want a chance to be off =
for
the summer), but THAT therapist then is required to follow ALL IEP goals.
Three Ye=
ar
Evaluation IEP Advice
One
parent had a three year evaluation meeting coming up with her son and asked=
for
any tips on the pre-evaluation meeting, revision of goals, add ons, pitfall=
s,
etc.
Gloria
responded,
I always go into these reviews armed
with my own evaluation. I
take the last set of goals and stat=
us
as I see them. Our statuses do
not usually agree, and I want them =
to
realize (and document) that these
marvelous things they see are not b=
eing
generalized. I write the new
goals I would like to see along with
the steps to achieve and how to
evaluate that these steps are achie=
ved.
I also take in a typed sheet
(copies for all attendees) of
additional info, like services needed and
why. This would include things like
Lunch Bunch, Best Buddies, Peer
Pals, etc., with info on how they c=
an
do this and why. If I have a
recommendation from social workers =
or
phsychologists I bring copies of
that also. I ask for specific minut=
es
of speech, ot, etc, again with
prescriptions for them. In other wo=
rds
I basically do the whole
process myself so that I am prepared
for whatever comes out.
I always in advance ask for time fo=
r me
to address the group so they know I will
need time. I usually take my time in
the beginning so they know where
I am coming from and then I ask for
time at the end to confirm that all
my issues have been met or at least=
discussed,
and to ask that my info
be added to the IEP for the permane=
nt
records. If we did not come to a
satisfactory conclusion I go home a=
nd
immediately write a letter to ask
for a reconvene of the IEP and state
what the purpose is, and ask for
the head of Special Ed and Autism
Specialist to attend, if they did not
previously. I have had as many as 3
reconvenes to gain something of
real importance to me. At the third=
I
had an advocate on the phone who
needed to say absolutely nothing.
Suddenly there was no problem doing
what I asked. I
"misunderstood" them when they said no. I simply
thanked them for their time and wal=
ked
out with my request.
By the way, I always take someone
(usually our private social worker) with me
to be an unemotional witness (and to
tap me when my emotions are
getting in the way, which I try to
avoid). We discuss the meeting to
verify what I think I heard. I am
always cordial. I bring a canister
of homemade cookies. Try to keep
everything friendly. As I have often
reminded them, I am the parent. I w=
ill
be responsible when she is 25
and you are not here. I am only doi=
ng
what any of you would do in my
position, fighting for the best for=
my
child. I understand, though I
don't say this, that they are doing
their job trying to contain costs.
That is not my concern. I also alwa=
ys
carry, very visibly, an indexed
(with red, yellow, green, colorful
tabls) copy of the blue Standards
book (I can't remember the correct
title but I think every parent of
spec ed kids has a least one copy.<= o:p>
Killian said,
Pre-evaluation meetings are laced w=
ith
problematic issues. First of
all there is no such thing under the
law. IDEA speaks of IEP meetings
only, any other type of Special
Education meeting involving your child
is usually the District's way of
getting around legal issues.
Secondly, unless the meeting is an =
IEP
meeting, the District should not
be discussing goals, add-ons or
anything else regarding the
construction of your child's new IE=
P.
The real issues are how is your
son's current IEP, do you want it
changed in any way, are the goals
being met and are the services and
accomidations leading to educational
success.
Kristin suggested,
So far everyone has talked about the
goals and IEP changes that result from the re-eval, but the re-eval itself =
is
the most important thing. This "pre-meeting" is called a Do=
main
Meeting in which the team gets together and discusses which domains - areas=
of
functioning - need to be evaluated and how they will be evaluated. Yo=
u as
the parent have as much say as the educational staff regarding what will be
evaluated and what tools will be used to do the evaluation (standardized
assessments, performance data, observational data, parent interview,
etc). If there are services your child does not have but you think he=
needs,
now is the time to request an evaluation of that domain. Have a child
with low tone issues who has behavior problems in the afternoon? Maybe
now is the time for a PT eval to assess whether or not low muscle tone is
contributing to fatigue and affecting the child's ability to participate in
educational activities in the afternoon when he or she is more likely to be
tired. PT services to address core muscle strength may solve that
problem. Anyway, that's just an example to demonstrate that really
anything is open for questioning and evaluation at this point so you might =
as
well use it to your advantage to look into issues that you have been wonder=
ing
about. The school has 60 days to complete the evaluations from the day that=
you
sign consent for them - usually at the Domain meeting.
Once you have decided what will be
evaluated and how, make sure that the school team understands that you will=
not
come to the next meeting - the Eligibility and IEP meeting - until you have=
had
a chance to study the results of the evaluations. When you get the
reports, study them to see if there is an evaluation that you think is way =
out
of line. If not, great. If so, you should request an independent evaluation=
at
the district's expense and delay the eligibility meeting.
Someone else mentioned that they al=
ways
get a private evaluation at this time too. This is a good idea if you=
can
afford it or have insurance that will cover it. You don't need to get=
all
private evals - just ones that address the needs that you are most concerned
about or the ones for which you think there may be some disagreement with t=
he
school. The district is obligated to "consider" any private
evaluations you bring in but they are not obligated to abide by the
recommendations. Nonetheless, it is helpful to have professional guidance a=
nd
recommendations from a neutral source or from private practitioners who know
your child well. People have different theories about whether or not =
you
should give your private report(s) to the school team beforehand. My recomm=
endation
is to do so so that they have time to read them. They are much more likely =
to
toss them aside if they have not had time to read them. And besides -=
you
expect to get their reports beforehand, so you should model the same behavi=
or.
At the Eligibiity/IEP meeting you w=
ill
first all review the evaluations together and then decide if your child mee=
ts
the criteria for eligibility under one or more of the 13 (?) eligibility
categories. Presumably for people on this list, most of our children will m=
eet
the Autism eligibility criteria. Just a note about categories - remem=
ber
that there is a difference between a medical and educational diagnosis. The
criteria for an *educational* diagnosis of autism can be found on ISBE's
website. "PDD" and "Aspergers" are *not* eligible
categories. They are meant to fall under the Autism eligibility categ=
ory
for educational purposes - so don't get upset if your child with PDD or
Aspergers is listed under "autism" on the IEP. Also be aware
that most of our kids have both a primary and a secondary eligibility categ=
ory
even though we as parents may not even have noticed that there are two or m=
ore
listed on their IEPs. When I first learned this, I went back and look=
ed
at my kids' IEPs and noticed that indeed, one of them had "Speech and
Language Impairment" as a secondary diagnosis/category. The other did =
not,
and it was the more verbal one that did. Go figure. For kids on the spectrum
who have pretty good language skills but still have significant pragmatic
issues, you might want to make sure that they have "Speech and Language
Impairment" as a secondary diagnosis in order to shore up the rationale
for speech services.
Once the eligibility is determined,=
the
rest of the meeting proceeds pretty much like any other IEP meeting but wit=
h,
hopefully, better documentation and evidence of the child's needs than one
usually has.
You asked about pitfalls to watch o=
ut
for. I have not heard other people discuss this, but this is a big pet
peeve issue for me - IQ scores. It seems that the psychologists always
want to do cognitive testing and that means determining and reporting an IQ
score. This has blown up in my face twice. I'd love to hear if it has
been an issue for other people. One of my guys did a re-eval and the
overall IQ score came out over 100. It was helpful in that it showed =
more
than a 30 point split between verbal and performance scores - a definite si=
gn
of learning disability. But when I applied for 72D in-home support
services from the state for this son, he was denied services because the
clinical review team decided he must not have a developmental disability
because his IQ was above average. Of course, that's completely insane and
against the all the rules and definitions so we are appealing, but it still=
has
caused a problem.
When my other guy had his re-eval l=
ast
year, the psychologist wanted to to cognitive testing and I said No. =
She
said that she had a test that was adapted and would work with kids on the
spectrum. And the speech therapist was there to help my guy because of
receptive and expressive language problems. So I agreed, but from my
perspective it was a disaster. There simply isn't a good IQ test for =
kids
on the spectrum - they are usually not motivated to do standardized testing=
and
their language and attention problems make matters worse. Well, the resulti=
ng
IQ score came back abysmally low. I asked that the scores be taken ou=
t of
the report and that the test and results be torn up and discarded - I did n=
ot
want them in my child's school record. There was some protesting but I poin=
ted
out that people who do not know my son could read those scores and severely
underestimate him. The reply was that no one in this school would do =
that
- they would see him as an individual. So I said, great then we don't need =
the
scores anyway. So they were taken out of the report and presumably ou=
t of
his record, though I forgot to check that. Another reason I wanted th=
at
IQ score tossed was that he would have qualified for a secondary diagnosis =
of
mental retardation. I do not want that as a secondary diagnosis.
For one thing, it's not true. But most importantly I always worry about low
expectations and goals when kids carry that label. I know in the futu=
re
if he needs state services a low IQ score may help us - but we can cross th=
at
bridge when we come to it.
Outside
Evaluations
A parent has a daughter who does we=
ll
academically and has a speech IEP.
She had an outside evaluation with a neurological developmental
pediatrician that diagnosed her daughter as having high functioning
autism. The school would not =
accept
the evaluation saying that she does not exhibit autistic behavior in school=
and
is merely shy. The parent wan=
ted to
know what recourse she had.
Jenn said,
Unfortunately for the school, even
though behavior is not seen in school, it's still their problem. I was
told by my lawyer that goals that are met in school, but not outside of the
school and/or may have been lost are STILL the school's responsibility.&nbs=
p;
Go to www.wrightslaw.com. They are an
incredibly resourceful website. I also purchased their two books.&nbs=
p;
Another book that is well worth the read...."How to Compromise with yo=
ur
school district...." (or something along those lines...reading too many at a time=
IS
confusing).
I BELIEVE, and someone out there
correct me if I'm wrong, but I BELIEVE you can request a second opinion (of
course, always in writing) AT THEIR EXPENSE. You may have to pay up f=
ront
and be reimbursed; I am not sure how that would work as we haven't had to do
that.
Laurie responded,
First, how frustrating!! Perh=
aps
more important than the label, though, is what kinds of services is she
receiving via her IEP? One would hope that it's chock-full of
communication, behavioral and social goals with some sensory thrown in for =
good
measure. All designed around her individual needs, of course.
You don't mention your daughter's a=
ge
or grade, so at the risk of sounding like a broken record, please
remember.....it's the social and communication challenges that will hold yo=
ur
daughter back when they are out of public school and need to find and keep a
slot in college, having satisfying relationships with friends or coworkers =
or
loved ones, with a room mate in an apartment, with getting and keeping a go=
od
job, etc.
Since you've had the outside evals,
hopefully they have given you some guidance as far as highest areas of need=
for
your daughter's age and developmental level. As you proceed thru the
frustrating and often emotional process that you're in, try to keep yourself
and your team focused on the needs of your daughter (because those shouldn't
change regardless of what diagnostic category is checked off on the 3-year
re-eval). Hopefully that helps you secure the services she needs.
Marie replied,
We were told that our son and then =
our
daughter had to meet the 'education definition of autism.' It's kind of a g=
ame
they play, we felt, and we were nervous about it, because we had outside ev=
als
but yet they were warning us that it might not matter, it was what the 'team
felt.' (This was even after it was the school psychologist who first identi=
fied
to us that our son probably had Asperger's, which we had never heard of at =
that
time).
However, the standards for the educ=
ational
definition of autism really are the DSM-IV criteria for autism. We had the
outside evaluations, which our school district did respect and we gave
them copies of the reports. Additionally, for our daughter I put a che=
at
sheet together of the educational definition criteria/DSM-IV and what behav=
iors
our daughter exhibited that met each one (no eye contact, social interactio=
n,
repetitive behaviors, language delay).
I'd recommend getting their educati=
onal
definition of autism checklist and then filling it out yourself, and
demonstrating how your daughter meets (or doesn't meet) each item. Her scho=
ol
success has NOTHING to do with whether or not she meets the criteria of aut=
ism,
NOTHING! You need to adamantly fight that statement that services and meeti=
ng the
criteria of the label are tied to academic failure because they are no=
t!
Teri offiered,
Here is a link to the Illinois State
Board of Education, on this page there are downloadable policies and a Pare=
nt's
Guide.
http://www.isbe.state.il.us/spec-=
ed/html/parents.htm
I also made a specific list of how =
my
child's education was impacted in each of the areas of the educational
definition of autism. I do think this helps. The ABLLS assessment was very
helpful in getting a more individualized educational program and helps keep=
our
home and school programs working together.
Should
I take a Lawyer or Advocate to the IEP
One parent asked if she should take=
a
lawyer with to her child’s IEP meeting.
Jennifer said,
It's not necessary to take a lawyer
along unless you have to, in my opinion. Most certainly, though, I'd =
take
an advocate along with you. It's always a good idea to have them at e=
very
IEP if you can. School districts are irritated by lawyers, so it will
only irritate the situation between you and the district should you want the
IEP and your child's education to go over well.
Dawn
asked,
Are you expecting a fight about
services during this IEP? Usu=
ally
an attorney is brought in when there is already trouble and you plan to go =
into
mediation or due process. If you have had no troubles and are on good terms
with the staff, bringing an attorney will send a mixed signal. In the future
the staff will become
very guarded on what they say.
I believe you have 10 days to sign =
off
on your approval of the three year IEP. If you merely want to make sure the=
re
are no red flags popping out, you can always secure an IEP consultant or
attorney to review the report.
In my opinion, nothing beats just b=
eing
prepared for the IEP. I would pick up
some of the Wrightslaw books (or go
online www.wrightslaw.com) From Emotions to Advocacy or Lawrence Sigel's The
Complete IEP Guide: How to Advocate for Your Special Ed Child.
More important, get a full understa=
nding
of your child's future needs. We have
many Abilities Checklists in our To=
pics
in Autism section
(www.autismcommunityconnection.com).
Request a meeting weeks beforehand with the support ed teacher and other
therapists on their direction with your child and what you would like to se=
e.
Give them copies of those checklists and point out areas of difficulty for =
your
child. I like to make separate meetings with each person. You will get a fe=
el
from these meetings if the two of you are on the same page and if an attorn=
ey
will be necessary.
Al
offered,
What we've found to be very effecti=
ve
is that when you realize that you're having issues, or might have issues,
instead of taking the 2-3 page handout on the IEP, request the 'big binder'
with all your rights, etc. That will definitely get their attention!
Jennifer added,
First, when the school notifies you=
of
the IEP meeting they need to give you 10 days notice? If not, you have
the right to cancel the meeting and reschedule. The school must provi=
de
you with 10 days notice.
Secondly, they must tell you exactly
what their intentions are at that meeting - i.e. placement (if that's the
issue), restructuring the IEP, etc. That comes on the paper they send=
you
when you get the notice of an IEP.
Next, an attorney is not
necessary. I had to bring one to mine because the school district had
really done a number of my son. It was about time. An advocate
would suffice. They know all the laws, though they don't truly have a=
ll
the power of an attorney. A lawyer is something you don't use unless =
you
want to cause tension between you and the district. And as a last res=
ort.
Had I known any better, I would have
brought an advocate to each and every meeting. From now on, I will.&n=
bsp;
Also, check out Wrights Law (I beli=
eve
www.wrightslaw.com or .org). This is an incredibly helpful website, as
well as their books they have. I also purchased "How to Compromi=
se
with the School District without Compromising your Child" (I think it's
the name).
Marie said,
You don't need an attorney or an
advocate necessarily. We've been through IEP meetings for five years-someti=
mes
mulitiple meetings per year, and we've never had either.
It's going to depend on your situat=
ion,
what the school recommends, whether you agree with it, etc. If you're lucky
enough to have a good district that is proactive (like it sounds like your
district might be), then just getting informed, asking lots of questions, a=
nd
serving as a vocal member of his IEP team will be enough. Don't go alone an=
d remember,
you are your son's best advocate and as such, your job is to speak
up for whatever you think is the best for your son. The IEP is not car=
ved
in stone either - if you want to open it up, you have the right to request
that.
If you don't hire an advocate or
attorney, you need to really understand your rights and the wrightslaw web =
site
is really good and there are lots of books too on the subject of IEPs. You
don't mention your son's age or severity of his disability but there are ma=
ny
options the school can offer, from Speech, Social, OT, PT, an aide,
modifications and accommodations, to a special education class. The school =
is
mandated to provide the 'lease restrictive environment' that meets your son=
's
needs. The IDEA law is on the web, including the new regulations that came =
out
in August.
If you don't agree with what the
school wants - or the diagnosis - you do have rights, including the ri=
ght
to dispute.
What is =
the
role of the school social worker?
A
parent asked about the role of the school social worker and if there is suc=
h a
thing as social minutes to address social-emotional issues of autism.
Jennifer
said,
My son has HFA/Asperger's and ADHD,=
and
he gets 60 minutes per week direct and 15 consult. So when they do the
direct minutes, he can take a peer to the social worker's room for a game to
play, or he can pick two or three. Some actually facilitate play on
playgrounds during recess.....More often than not, they do the social work
right there in the room, so it's in a more natural setting.
Christy answered,
Our school social worker
has worked with our 6yo Aspie in helping him verbalize feelings
instead of escalating. She's also had him into her office to
play games with him and with him and other children to help with socia=
lization
and social language. The school psychologist has only done his
evaluations.
Annie replied,
We have social minutes/goals in
the IEP for our child with the school social worker. We did have=
to
push for this, but we do have 30 minutes a week for our Asperger's kiddo (9
yrs. old, 3rd grade). It is a combination of a social 'group' to
bring a peer to and work on social skills, and also some individual time to
work through some of the anxiety issues and coping skills.
Dawn said,
The social workers at some schools
offer ‘lunch bunch.’
This is a weekly lunch session with kids who may have underdeveloped
social/emotional skills. They
usually can invite a friend with them.&nbs=
p;
Then they play games and discuss feelings, conflict resolution,
negotiation, etc. in a fun environment.
Aides
in Middle School
The use of an aide in middle school=
is
different than the aide support given K-5.=
A parent asked for insight from other parents.
Marie said,
My son, who is lower functioning, d=
id
have an aide in jr. high. Several friends who have higher
functioning kids, also had aides in jr. high. One had a
one-on-one aide the first year (6th grade) but gradually had the aide
become more of a study/buddy for study hall for 7th and 8th and also return=
ed
as a one-on-one for classes he had trouble with--like French. I'm sure
you are worrying about the other kids, etc. and how it would look to
them. Let me put it this way--if your son was hearing impaired, would=
it
be a problem to have a signer for his classes translating for him? Ki=
ds
are tolerant if you put it to them that way. If your son would do bet=
ter
with an aide, he should have an aide. An aide can sit in the back of =
the
class and help out with whatever needs to be done for the whole class. =
; As
a former public school music teacher, any extra help was always appreciated=
!
Pragmatic
Language Test
A parent asked if there are any
specific assessments for pragmatic language and communication. The school isn’t convinced t=
hat
her son with Asperger’s needs an IEP because he does so well academic=
ally
but he is unable to make a phone call to friends or resolve conflicts becau=
se
he lacks social/communication skills.
Dawn said,
There is a Test of Pragmatic Langua=
ge
that can be used. However the=
test
has some limitations.
This link from the Indiana Resource
Center for Autism called Can Social
Pragmatic Skills be Tested? is help=
ful.
It points out the limitations of using the above test.
http://www.iidc.indiana.edu/irca/=
communication/socialpragmatic.html
If your school does not have this t=
est
at their disposal and you feel strongly
about using it, you can order it fr=
om
Super Duper for $160 -
http://www.superdu=
perinc.com/TUV_Pages/tm47.htm
Here is another link that does a be=
tter
job explaining the content of the test
http://depts.washington.edu/socco=
mm/tests/topl.html
Teri replied,
For pragmatic language targets among
many others, I recommend the ABLLS (Assessment of Basic Language and Learni=
ng
Skills) assessment by Partington and Sundberg. There are court cases verify=
ing
the appropriateness of this assessment for children with autism. You can re=
ad
about it on the polyxo website about halfway down the page. http://www.polyxo.com/assessment/
Check it out from a library if you =
want
to first. I recommend you buy one for yourself and one for your child's IEP
team. It is available to purchase from different roads to learning at
and or direct from the authors at <=
/span>http://www.behavioranalysts.com/p=
roducts/products_6.html.
My child has a lot of language but
needs help to target his social use of language including his body language=
and
observation of other's body language. The TOPOL assessment didn't really he=
lp
identify my child’s deficits since the assessment is done by an adult=
in
a one to one situation and from my understanding of it uses pictures for the
child to describe.
School R=
efuses
to do Case Study
A
child with Asperger’s has a 504 plan and the parent wants it changed =
to
an IEP. He is doing well
academically but has significant challenges when doing homework, class
assignments, etc. He has docu=
mented
social language skills and social/emotional impairments. The parents wanted a case study
evaluation specifically testing pragmatic language. The school refused and the parent
wondered what to do next.
Jennifer
said,
My question to them would be: how m=
uch
knowledge of Asperger's do they really have? If the teacher is spendi=
ng
more and more time with him, and homework is a "nightmare" (I'd a=
dd
that as a special effect), it's OBVIOUSLY a receptive language issue and/or=
a
auditory processing issue.
I would write a letter of an appeal,
and ask that they provide funding for an outside source for a second
opinion. Tell them you do NOT agree with their opinion. Academi=
cs
will ALWAYS be a strong point for children with AS, and they will try to use
that point to their advantage. One thing I learned is that the school
district is responsible for any goal NOT met OUTSIDE of the school as well,
PLUS they are also responsible for any goal not RETAINED once they claim it=
was
met.
Marie wrote,
My son is 9yo and has Asperger's. H=
e's
had an IEP since kindergarten even before the dx of first ADHD and then
Asperger's. He receives OT, speech, social, and resources services and has a
1:1 aide.
First of all, I would request anoth=
er
domain meeting, in writing, and I would send it certified mail to the school
and copy the district. You re=
ally
need to get him on an IEP instead of a 504 - I don't know why you'd still b=
e on
a 504 with an Asperger dx.
Next I would get the page from the =
IEP
paperwork for your district that defines the 'educational definition of
autism.' This is what you need to show that your son meets to receive
eligibility under the education category of Autism. My son has a secondary =
of
Other Health Impaired (OHI).
Have you had an outside dx? Have you
furnished them with a copy of that report? The report should have
recommendations including services to be received from the school.
If the report isn't detailed enough=
-
go back to that clinical psychologist and get them to write recommendations
into the report. I think our report was 17 pages and was very specific about
what the school needed to provide.
Your son does not need to be failin=
g to
receive services...
I would also have a conversation wi=
th
the district rep who runs the IEP meetings and try to get information on wh=
at
is needed and let that person know that you are prepared to get an attorney=
and
go to Due Process if you have to, but you're hoping that they will help your
child receive the services he needs without going through that.
If that doesn't work, then YES by a=
ll
means I'd get an attorney.
Joan added,
Before consulting with an attorney,
check out wrightslaw.com - a special education law site - it has tons of gr=
eat
information and may answer some of your questions. Also, under IDEA, Autism
(which Asperger's falls under) has its own classification under disabilitie=
s.
This diagnosis makes him eligible for an IEP by IDEA law. Obviously, his
difficulties are "adversely affecting his educational
performance," and that is what=
you
should say to the school. How is his teacher? Can you talk with her/him fir=
st?
Usually, the teacher is your child's best advocate
-- plus if they are having to spend
more time with him in class, I am sure that she/he realizes that he may need
additional services. I hope this helps. Joan