[blindkid] IEP goal/objective help needed

Jami Cole cjcole at mainstreetcom.com
Fri Dec 18 01:56:55 UTC 2009


I would like to take a minute of your time to introduce my daughter, Calli
very specifically and then ask for your input and help.  We have an IEP
meeting next Monday, Dec. 21st to address, for the first time, our
daughter's vision needs. What I specifically need is input on
goals/objectives.  What services should Calli receive and what amount of
time per week she should be serviced?  Are there any tools or technology
that Calli should be provided?

 

Calli suffered an anoxic event during birth. She is now 11 years old and
we've just found out how extensive her vision loss is.  She's had an IEP for
her other needs since she was an infant.   

-          She has choreoathetoid cerebral palsy.  She is able to bear
weight and walk and ride an adapted bike when assisted with complete upper
body support.  She rolls but doesn't sit or crawl.  She is in a manual
wheelchair with a head/neck support system.  Her fine motor skills are
extremely challenged as she cannot hold anything independently or isolate a
digit for pointing.  We feel her developmental age is around 5.

-          She lacks a sufficient swallow reflex and is 100% gtube fed.  She
is non-verbal except for a voiced "yes" response.  She turns her head for
"no".  She has a DynaVox 4 which with voiced prompts she accesses with 2
switches.  A switch recessed into her lap tray is her scanning switch and
one mounted on her head rest is her select switch.  She has had a different
SLP at school every year since she started using the device.  She was the
first student in our rural district with a device so the learning curve has
been very steep for her educational team.  The school is very resistant to
her using the DV4 for anything but "recreational" time.  We'd like her
educated.  Based on her responses to conversations, we feel her receptive
communication is in the early elementary age range.  She enjoys being read
Junie B Jones books and laughs appropriately.

-          Her medical needs have included multiple respiratory problems and
2 seizure episodes.  She requires frequent suctioning, oxygen monitoring,
TID nebs and pulmonary Vest treatments.  Her doctor decided it was best for
her to remain homebound this year until at least May.

-          Lastly we have always known Calli has CVI.  If anything, we felt
her vision had improved following hyperbaric oxygen treatments in 2005 and
2006.  We have been led to believe based on the school's vision consultants
testing that her vision was 20/190 with strengths in certain visual fields.
Her IEP has included presenting her with letters/symbols at that size using
partner assisted scanning.  She has shown no identifiable successes with
these goals for over 2 years.  We now know why.  Her MD ophthalmologist had
never given us a specific measurement until this fall when I told her the
school's measurement.  She was appalled and told us her vision was assessed
that day at 20/2400 and even if she was having her worst vision day ever,
she still would never be anywhere near the 20/190 level.  

 

We need help as this vision area has been completely unaddressed for 11
years.  We have been advocating for increased use of her DV4 for over 2
years with minimal success.  We are pleased to finally be getting home bound
services where we can try and approach staff with a positive attitude and
show them Calli's abilities with her device.  We have no intention of her
returning to school as it has become a hostile environment towards her and
our trust level has been severely eroded.  Currently her IEP provides 15
minutes/month of indirect vision services.  I have seen her vision
consultant at only 2 IEP's in over 6 years.  What should we ask for in terms
of direct vision services?  What goals/objectives would be appropriate for
her?  I've heard that she should be assessed for Braille.  I could only
imagine this skill to be possible with hand over hand assistance.  Has
anyone ever heard of success in this area without more fine motor control?  

 

Any direction that you all could provide prior to next Monday's IEP meeting
would be a great help.  We have no ideas for goals/objectives, besides
pushing utilization of her DV4.  We are sure there is technology that could
be added to her home PC to read to her.  Whether or not the school should or
can provide technology, we are committed to providing for her with little
consideration of cost alone being a deterrent.  This may be a separate
question, but any leads on accessibility and technology would be greatly
appreciated.  

 

With much respect for your time,

Jami Cole






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