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CVI and IEP

Posted by gaylerutter on 4/7/2011 12:15:30 AM.

Hello- we have an IEP for my 10 year old son tomorrow.
I'm not new to IEP's buf feel I don't speak up as much as I should. Our VI asked us to put together some additional services we would like to see our son have, and I'm drawing a blank. She suggested, Life Skills, etc...  my son is 10 and does not tie his own shoes!  He has CVI.  Does anyone have any suggestions. I know this note is very vague...

There are currently 24 replies.

      

  • 1 . Re: CVI and IEP
    Posted by Judith Lesner on 04/07/2011

    Think about where you want him to be in 5 to 10 years and what skills it will take to get there. What kinds of self-care tasks does he do for himself? If he was sighted, what would you think the next one would be - i.e. spreading with a knife generally comes before cutting, undressing before dressing, etc. BTW - unless he gets it right away forget shoe tying. A person can live a rich full successful life and never tied his/her shoes - think slip-ons, loafers, velcro sandals, etc. Eating neatly is a much more important skill. How is his orientation and mobility. Can he get around on his own?
    Judith



  • 2 . Re: CVI and IEP
    Posted by BJackel on 04/07/2011

    I'd agree with Judith. Think of all the things your child is going to need for future independence. Social skills is also another important skill that many of our CVI kids have a difficult time with. How about computer skills? The computer has been my son's lifesaver and there are great programs out there. Just FYI, he doesn't write but he can type anything that needs to be written, sends emails, surfs the net, uses zoomtext for text-to-speech and magnification, co-writer to alleviate the slow typing process, etc.

    And don't forget all the Expanded Core Curriculum domains, they should also all be addressed.

    Shoe-tying...I wouldn't worry about it either. Aside from what Judith said, you can also go to probably any sporting goods store and purchase runners laces...you lace them through the shoe and then lock the lace so you never have to untie, your sneakers become slip-ons...they've worked really well for my son, I think he's on his 10th pair of laces. They also come in different colors.
    Hope this helps, let us know how your meeting goes and remember, nothing is set in stone. An IEP can always be changed with a simple meeting to amend it.
    Bernadette



  • 3 . Re: CVI and IEP
    Posted by CVHI2 on 04/07/2011

    Hi Gayle, Great advice from Judith L and Bernadette. Let's discuss more in CBVH teleconference next Tues. Look forward to talking with you then. Judith M



  • 4 . Re: CVI and IEP
    Posted by BJackel on 04/07/2011

    One more thing that just occurred to me about the IEP. In some states you need to sign them. Do not sign it if you feel you are uncomfortable with it and/or have outstanding issues, propose another meeting.



  • 5 . Re: CVI and IEP
    Posted by Judith Lesner on 04/07/2011

    As always I agree with Bernadette and with Judith M. Not sure but think parents must sign IEP in any state to make it a legal contract - which it is supposed to be. Also, at least in CA, you can sign IEP and indicate which sections you are NOT agreeing with and let the parts you agree with take effect while you are negotiating the disputed parts. Definitely agree with importance of teaching social skills which are often left out of IEP.
    Judith L.



  • 6 . Re: CVI and IEP
    Posted by Mom of Girls on 04/07/2011

    Great info about the IEP. My daughter will turn 5 this summer and we will be starting Kindergarten in the fall. She has significant dev delays, non verbal, and mild CP as well as CVI. Indiana doesn't use the Expanded Core Curriculum so I'm not sure what I can ask for even though the Expanded Core Curriculum would better address her needs.

    Not sure how to begin articulating what she needs.

    How do I participate in the Tuesday teleconference?



  • 7 . Re: CVI and IEP
    Posted by CVHI2 on 04/07/2011

    Hi Indiana Mom, If you're interested in the Tues. eve. CVI teleconferences, please drop me an email, including your tel. # and I will contact you. Judith Millman, teleconference facilitator (judithmillman@aol.com)



  • 8 . Re: CVI and IEP
    Posted by BJackel on 04/07/2011

    The Expanded Core Curriculum is not a state curriculum but one designed specifically for all students who are blind/visually impaired. If you go to aph.org you will find good information on it. There are 9 domains that should be addressed in your child's education beyond the usual curriculum of reading, math, science, etc. They are basically the skills that our kids don't obtain incidentally, rather, they need specific instruction. For instance, one doman is independent living skills. These skills are not taught to the 'typical' student, often these types of skills are just picked up visually and naturally...like watching Mom make eggs for breakfast. The BVI population can't get this information unless it is specifically taught to them for the obvious reason of not being able to see what is going on.
    Hope this helps,
    Bernadette



  • 9 . Re: CVI and IEP
    Posted by MaribelNAPVIparent on 04/07/2011

    These are all wonderful and informative responses. I hope that you receive this additional information prior to your IEP meeting tomorrow and that you find it helpful.

    1. The IEP is an agreement (legally binding) between parents and school personnel.

    2. The IEP is based on the student's unique academic, social and behavioral needs.

    3. Parent's must receive (upon request) copies of all evaluation reports that will be discussed prior to the meeting.

    4. The IEp team must consider parent's concerns, the child's strengths, the results of the initial or most recent evaluation(s) and any other information about the student provided by the parents.

    *to be continued...



  • 10 . Re: CVI and IEP
    Posted by MaribelNAPVIparent on 04/07/2011

    *continued

    5. IDEA (Individuals with Disabilities Education Act) states that certain things be included in the IEP.

    *Report on the child's present level of education, performance, learning characteristics, social/physical developtment and management needs.
    *A classification of the child's disability.
    *Mesurable annual goals.
    *Recommended program to meet the child's needs.
    *How the disability affects involvement and progress in the general curriculum.
    * A description of any specialized equiptment or devices needed.
    * Related services, including frequency, duration and group size.
    * Goals

    **continued



  • 11 . Re: CVI and IEP
    Posted by MaribelNAPVIparent on 04/07/2011

    ** continued

    These are some of the highlights which you should definitely look for to be addressed in your meeting.

    Parents are intended to be full participants in the IEP process, you are and equal partner with school personnel in making these decisions.

    Parents have valuble information to offer regarding their child's developtment, needs and behaviors.

    Please know that in the end there is no better advocate for your child that YOU!!!

    Thank you for allowing us the opportunity to connect and I am wishing you lots of luck from NY.



  • 12 . Re: CVI and IEP
    Posted by kjhgriffin on 04/08/2011

    The best tool I have found is Dr Christine Roman-Lansky's(spelling?) book on CVI. It's a great tool for designing an IEP. In my experience, most professionals, even many in the "vision" field know little about how to address CVI. This book was designed especially to help professionals design programs to meet the needs of CVI kids.
    Also, never stop fighting for the skills you think are important. My son was potty trained by the beginning of 2nd grade, but as he was non-verbal he could not tell them when he had to go. In order to allow his "one-on-one" aide to help with other kids, she was instructed to take him to the restroom less frequenly and change him rather than give him the opportunity to sit on the toilet. Needless to say, the potty training went out the window. I fought for years to have toileting included in his IEP, but was told it was inappropriate. Only after I finally was able to provide legal documentation that it was indeed appropriate was it finally included. But the damage was done. Most days he makes it through the day dry, but is still wet at least one day a week. So keep fighting for the skills he needs for day to day living. Most skills you teach him at home will not hold if not also practiced at school.



  • 13 . Re: CVI and IEP
    Posted by pooja.mehta21 on 07/03/2011

    exactly..being an equal partner in IEP, your goals for your goals should be pressed upon aggressively. I would suggest never leave out self-care skills and social skills. If child becomes independent..other things can be worked out. In long run say when child's adult..these selfcare skills and social skills are most important..
    All the best for tomorrow's meeting.



  • 14 . Re: CVI and IEP
    Posted by bdquesinberry on 07/15/2011

    We are getting ready for an IEP meeting with my son who is 5. We have had lots of issues with his IEP in pre-k and I am not looking forward to the meeting now that he was just diagnosed with CVI and we are awaiting the diagnosis of Austism as well. Is there anything I need to know about IEP and CVI?



  • 15 . Re: CVI and IEP
    Posted by CVHI2 on 07/15/2011

    Hi, if possible, your son should be evaluated by a professional who is knowledgeable about CVI--i.e. a TVI who has worked with children with CVI and will be aware of what adaptations he will require. I'm the facilitator of a CVI teleconference group that meets every Tues. evening via telephone. I'm sure you'd get lots of helpful info from the parents on this call as they have all gone through the same challenges. If you're interested, please email me at: judithmillman@aol.com and I will get back to you promptly about how to join our call. Good luck, Judith Millman, LCSW



  • 16 . Re: CVI and IEP
    Posted by CVHI2 on 07/15/2011

    Hi, if possible, your son should be evaluated by a professional who is knowledgeable about CVI--i.e. a TVI who has worked with children with CVI and will be aware of what adaptations he will require. I'm the facilitator of a CVI teleconference group that meets every Tues. evening via telephone. I'm sure you'd get lots of helpful info from the parents on this call as they have all gone through the same challenges. If you're interested, please email me at: judithmillman@aol.com and I will get back to you promptly about how to join our call. Good luck, Judith Millman, LCSW



  • 17 . Re: CVI and IEP
    Posted by CVHI2 on 07/15/2011

    Hi, if possible, your son should be evaluated by a professional who is knowledgeable about CVI--i.e. a TVI who has worked with children with CVI and will be aware of what adaptations he will require. I'm the facilitator of a CVI teleconference group that meets every Tues. evening via telephone. I'm sure you'd get lots of helpful info from the parents on this call as they have all gone through the same challenges. If you're interested, please email me at: judithmillman@aol.com and I will get back to you promptly about how to join our call. Good luck, Judith Millman, LCSW



  • 18 . Re: CVI and IEP
    Posted by anosmommy on 07/27/2011

    Hi - it looks like this Blog is pretty current.

    We are still fighting for appropriate services for my 3 1/2 yr old with CVI and agnosias.

    In the meantime, we & his teachers are forging ahead trying to educate him. Can anyone tell me their experiences with Braille vs. tactile ABC to teach CVI children to read?

    Does anyone know a child with Visual Agnosia?

    If you do, please respond or email me (anosmommy@gmail.com).

    As always, I find that it's the parents who are the most knowledgable and practical - awaiting any advice, re education, entertainment, services, etc!

    Thank you



  • 19 . Re: CVI and IEP
    Posted by Mom of Girls on 09/11/2011

    Thanks so much for the responses. Still trying to work out what we can get for my kindergartner. I've got a TVI I work with coming to her school tomorrow to do a training for the staff. Has anyone contracted Dr. Roman to work with their school systems? If so, how does it work?

    I look forward to participating in the Tuesday telephone meeting some time in the future. It is comforting to know that there are others out there going through the same thing.





  • 20 . Re: CVI and IEP
    Posted by fields7667 on 09/12/2011

    Indiana mom - when it comes to IEP's in the state of Indiana and for case conferences - take a tape recorder as they can get hectic, bring a spouse or a friend, anyone can attend the case conference. If you're not comfortable with the IEP - take it home and read it the next day. We ended hiring an advocate as the school system we are in isn't the best when it comes to special needs children and she has been dynamic. Also check out ASK or Insource in the state of IN. If it's your first case conference don't be shocked if there's about 15 people in there plus you. My husband went to his first for our daughter who just started kindergarten and couldn't believe all the people. Also, if you are involved in any therapies ask your therapist for input. The school wanted every other PT for our daughter and our therapist was like no - she needs weekly at least at the beginning of the school year due to safety factors.
    Also, you can ask for monthly meetings with all the staff. They can either be informal meetings or case conferences and as someone stated IEP's can always be changed. Plus make sure everything is being enforced in your IEP. One more thing -make sure there is an evacuation drill/fire drill plan in the IEP. We didn't realize there wasn't one in our daughter's till this year. The teacher needs to know ahead of time what to do with your child in case of an emergency.
    fields7667@hotmail.com



  • 21 . Re: CVI and IEP
    Posted by gaylerutter on 03/20/2012

    Hi there - I miss the phone calls and would love to get back in touch if I could - at least be included on the e-mails
    Here I am again a day away from my 11 year olds IEP and finding it difficult to come up w/new goals! His VI has given us a list of independent living skills so I will go with that along w/some social skills. My son Jacob is just about to finish up his first year of jr high - I can't believe it. Diagnosed w/cvi in 1st grade.. would love to connect w/anyone with a child in the same age group.
    Thanks! Gayle from Naperville, IL



  • 22 . Re: CVI and IEP
    Posted by fields7667 on 03/23/2012

    I am not the same age group as my daughter is only five but I would love to talk to you sometime since you have older children and get some ideas from you. I have a habit of connecting with moms with kids younger than mine which is great but I would love to talk to you sometime about your kiddos.
    Good luck with your IEP ours is May 1st. Thankfully our VI consultant is wonderful and the goals she establishes are right where Sami needs to be finally.
    Dena
    fields7667@hotmail.com or dfields@kirbyrisk.com (i use this one more)



  • 23 . Re: CVI and IEP
    Posted by Jean K on 04/04/2012

    I am new to this board. My daughter, age 7, was diagnosed with CVI at Cleveland Clinic by Dr. Rychwalski in October of 2011. I then took her to Dr. Christine Roman-Lantzy at West Penn Hospital for an assessment in November of 2011. Dr. Roman spoke at length to the advocate I hired to help me with the IEP, Unfortunately, I continue to have the same issues as most people have identified along the way: no one seems to know much about how to appropriately educate children with CVI. I am beginning to think it would be best for my child if I were to learn all I can about CVI and then teach her at home. My challenge currently is finding an MD ophthalmologist in MI who is expert in CVI and can assess her visual field. Her field is very compromised. She cannot yet walk down stairs or curbs without assistance. She will not walk in unfamiliar places without her hand held. If anyone has come across an ophthalmologist with expertise in CVI (who doesn't punt the issue back to the neurologist), please let me know. Glad to know this message board is available!



  • 24 . Re: CVI and IEP
    Posted by fields7667 on 04/04/2012

    Does your school have a visual impairment consultant for your child? If not, contact the blind school in your state and have them get you one. The one that I have in Indiana is wonderful. It's also great that the teachers she has follows the instructions that the VI Consultant gives. Good Luck on the opthamologist. My daughter is five and they always kick it back to her therapists.


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