My dd just had an OT eval--what do you think?

[3kidsmommy]

My 10 yo dd was born with a frontal encephalocele--repaired at age 1 with a craniofacial revision at the age of 4. She was lucky--no shunt, etc. She is in 5th grade now and for the last two years I had noticed her handwriting was really, really bad and now she is having "vision" trouble. By this I mean that I had to take her back to the eye doc after only 9 months--with her glasses she was only seeing 20/70. New prescription made her see 20/20, but she failed certain other screenings...she CAN'T track with both eyes and like when one eye is covered and they ask you to look at the tracking ball and then they remove the covering from the eye her covered eye is NOT looking towards the ball...it is looking to the side. Your brain is supposed to send signals to your eyes to work together--hers isn't. This has caused a huge problem with reading, especially now that the words are smaller and closer together in 5th grade. She has always made A/B honor roll, but at midterm brought home an F in reading..we were able to boost that up to a B simply because I pitched a fit and made them lower her reading goal. Anyway, the OT eval showed the same thing--that her eyes arent' working together...and she isn't really "seeing" as she is supposed to. The OT said she imagined she never had, which is why she couldn't tell us why she was doing bad--Hannah just probally thought this was normal. They have recommended OT...which I agree with--but do any of you know anything about this? I can't seem to find any information and I am wondering if we ought to check out the medical side of this as well.

 

[Talking Hands]

My oldest had a problem with her eyes not working together and the opthamologist gave her a computer program that she worked with everyday to teach her eyes to work together. She did this for about a year and it helped tremendously. She still has problems reading and prefers books on tape if she can get it.

 

[samkj]

Ask for a referal to a vision therapist. My daughter see's a VT at school 1-2 times a week for a cortical vision impairment (her eyes are fine, but due to the scarring in her brain the signal doesn't get through correctly) A good VT should be able to offer many suggestions tohelp with your daughters vision problems.

 

[SueM in MN]

Here's an interesting article about vision.

 

[Tinkerbelle'sMOM]

Was the enceph. big? And did they ever tell you what type if brain tissue was in there? That could make a difference also. Has she had a repeat MRI? Also, maybe consult with a pediatric opthamologist, they can tell you if she may need surgery to help correct this.

Good luck! I hope you figure it out!

 

[3kidsmommy]

As encephaloceles go, hers was not that big on the surface. It popped out when she cried, etc. It was about 4cm when according to the MRI...according to the doc who did the surgery, they had to go back, excise the tissue that was encephalocele and not brain tissue, and then sent that to pathology. They then corrected the abnormality of the skull. She has had numerous CT's and MRI's since then, but nothing in the past 2 years or so.
As for VT--there is someone here that does that--but does NOT bill insurance. That is why we went the OT root. I DO believe VT would help, but what can you do if you cannot afford the $100 a session?

 

[Twende]

Just a thought but maybe Easter Seals or the Shriners? I know in our area they have programs that help all kind of kids.

I hope you can find a solution for her. That must be frustrating for you all.

 

[joanchris]

As encephaloceles go, hers was not that big on the surface. It popped out when she cried, etc. It was about 4cm when according to the MRI...according to the doc who did the surgery, they had to go back, excise the tissue that was encephalocele and not brain tissue, and then sent that to pathology. They then corrected the abnormality of the skull. She has had numerous CT's and MRI's since then, but nothing in the past 2 years or so.
As for VT--there is someone here that does that--but does NOT bill insurance. That is why we went the OT root. I DO believe VT would help, but what can you do if you cannot afford the $100 a session?

Since this is directly related to her ability to perform in school then the school should (is obligted to) pay for the VT eval and treatment. It can be done during school hours, or even after if necessary and the school should still pay. My dd10 gets Music Therapy every week (after school) for one hour, for 5 years now. It's a tremendous help to her and I could not afford to pay for it as Insurance certainly would not cover it.
Also, in the preschool where I work there are 2 children I know of who receive VT, paid for by the school, and services are rendered in school.

 

[mariolatry]

I'm an OT, although I don't work in the school system.

Don't count out the OT yet. Some OTs take advanced training in visual therapy, particularly if they work in an area where it is typically required. I work with people with brain injuries, and visual-perceptual therapy is part of my job. You might talk to the OTs to get information on how they would address the problem. If they seem baffled, ask for someone with more experience.

 

[3kidsmommy]

Yes, the OT who evaluated Hannah has HAD additional training in VT--but the state where we live has now limited her ability to "practice" VT. She is going to be doing some of the therapy...but can't do everything they would do. Kind of sad! Thanks for the info!! Did I mention that I really, really LOVE the place where I took her? My ds goes there for his PT, OT and SLP as well--Cardinal Hill Rehab...they have the best pediatric outpatient center around.

 

[Stacey2grls]

My DD had this same problem. We discovered it early at age 5. They way we found was that my younger DD was receiving OT through early intervention, and the OT noticed that my older daughter couldn't track her eyes properly. She referred us to a a friend of hers that was was an Opthamologist I believe and had a "eye therapy" practice. She had an evaluation and she said that in fact she had this problem. I too noticed it because she couldn't focus her eyes properly and had a real hard time looking at print/flashcards. She went twice a week for 5 months and the properly totally went away! She was reading 3 months into it, when 3 months earlier couldn't even read her letters! I would like into this, it was one of the best things that we could have done for her. She is now in second grade and reads on a fourth grade reading level. Good luck to you and your daughter.

 

[LMC]

This is great that the OT will do as much as she can in regards to the VT. In the meanwhile, you should be pushing the school system for the therapy. My son needs it and the school system here already told me they won't provide it so I know I'll have that fight on my hands to get it. Right now they are in the process of doing his evals (I just placed him in public school for 1st time, 5th grade) to see what he needs and what they will do for him. I believe your OT is your best asset right now and will do all she can for your child!

Yes, the OT who evaluated Hannah has HAD additional training in VT--but the state where we live has now limited her ability to "practice" VT. She is going to be doing some of the therapy...but can't do everything they would do. Kind of sad! Thanks for the info!! Did I mention that I really, really LOVE the place where I took her? My ds goes there for his PT, OT and SLP as well--Cardinal Hill Rehab...they have the best pediatric outpatient center around.

 

[Anne MN]

LMC-
If your child has an IEP from his previous district already in place, they HAVE to follow it. we changed districts before the school year, the new district started with her then current IEP, but re-evaled her because her IEP was so broad and didn't have reasonable goals (this is for a 5th grader- put her work assignment in the correct folder 3 out of 6 times and she reaches her goal- they only had 2 folders!)

 

[LMC]

This is way OT from the original post, sorry OP. Not trying to hijack but we can all probably benefit from IEP discussions.

We don't have an IEP as he was in a private school for K and 1st and I have homeschooled for the last three years. We have a friend that works for the state that encouraged us to put him in public so we could get him assistance. We have had testing out the wazzu and were told by people that the system would have to follow the recommendations outlined by those private sessions. Well now we find out from our friend that works for the state (she evaluates special ed programs in school districts) that they DO NOT have to follow any recommendations by any doctors, specialists, only their own people. Well I've been around long enough to know that times are lean and school systems have to cut services and look out for their bottom line and that means my kid will not get all he needs. Then it's a they say, I say (or we say including the doctors) situation, court fight. It just really makes me sick to think we will have to go through this. The only reason I put him in school is to find out if he is educable enough to get a diploma. Even the doctors don't know how far he can go. So I'll let the teachers take a look at him for a couple of yrs to see what they think. If he will not be able to get a diploma, then I'll bring him back home again, because what's the point of a school setting especially if you have to fight for every little thing.

Right now, off the temporary IEP, they are already failing him. They told me they would follow some of the guidelines from his private testing (reduced work, more time for completion, the teacher is to write his homework assignment down every day) and they are not doing any of these things. I don't have a leg to stand on until we get the permanent IEP which we will do at the end of Feb. so after that I can start yelling at them I guess.

 

[SueM in MN]

THis resource hasn't been posted on this thread yet:
www.pacer.org

The PACER Center is located in Minnesota, but is a national resource for education rights. They have lots of helpful information and have links to resources in every state.

Also, someone mentioned Shriners or Easter Seals. I'd also suggest contacting the Lion's CLub if there is one in your area. Vision is their special focus.

 

[joanchris]

Well I've been around long enough to know that times are lean and school systems have to cut services and look out for their bottom line and that means my kid will not get all he needs.

Our special children will NEVER get all they "need" in most systems, the school is only obligated to give children what is APPROPRIATE, WAY different from what most of us parents think our children need (or what is BEST for them).

Right now, off the temporary IEP, they are already failing him. They told me they would follow some of the guidelines from his private testing (reduced work, more time for completion, the teacher is to write his homework assignment down every day) and they are not doing any of these things. I don't have a leg to stand on until we get the permanent IEP which we will do at the end of Feb. so after that I can start yelling at them I guess.

Choose your battles, picking the most important things first............DOCUMENT what is done and not done....call/email (if you have it) the teacher and principal with questions/comments/requests.....WRITE letters to the person in charge of the temporary IEP (in our system there is a person in the Pupil Services office in charge of this), copy to the principal and teaacher/spec ed teacher what you're saying---something like "according to temporary IEP dated xyz Teacher should be sending home written homework assignments, this was not done on the following dates......." etc.
When I realized my daughter was not getting all the therapy time as stated in her IEP I sent in a form to be initialed by each therapist whenever they saw my daughter, with spaces for Date, length of time and type of therapy. All of a sudden her therapy started getting more "regular".
Good luck

 

[christym]

LMC, I don't know which state you live in, and IEP requirements vary from state to state, so you want to start by going to your local or state education website and finding the special education guidelines. The procedures you need to follow to get testing should all be outlined. Have you spoken to anybody in the special education department at your son's school? Usually they are willing to help.

I don't know who your "they" refers to. I would assume the school's principal and your son's teacher. If they aren't doing any of the things on your son's IEP (even if it's temporary) you certainly should be upset. Those accomodations aren't too extreme and there is likely a policy in place that says those accomodations DO have to be followed. I give kids extra time to complete work everyday. Does your son's teacher have a website? Sounds like no, but if there is one, homework might be posted on that.

I agree with the previous poster about documenting everything. That's the best way to prove anything. Also, sending forms to fill in may also help out, especially for things like homework because then you know that there's really no excuse. A carefully done form will take a teacher less than a minute to fill out. I have a few I could email or PM if you're interested.

I'm sorry that you seem to have found a school that is less than helpful, but not all teachers are like that and not all schools are like that. Most of us do try very hard to help our students. I work in NC, so if you're out here then I can give you some other tips/suggestions if you need them (I might be able to find requirement for other states as well if you have trouble finding things)!

 

[Baytoven]

The school is obligated to test students for possible learning disabilities, even if the student is passing. They cannot use her good grades as an excuse not to test him. Send your written request (mailed return receipt requested) requesting testing to the Child Find coordinator of your school district, copy dd's teacher and principal. Do not let them test only for IQ. They may try to use the difference (or lack thereof) between IQ and academic performance to show there's no learning disability. Insist they test for vision disturbances, not just screen her visual acquity.

 

[Baytoven]

Your son does not currently have an in force IEP, so you're limited in what you can do until then. Even if he'd had an IEP in private school, which follows different rules, it would be expired.

I understand that your friend suggested that you enroll your son so he could receive services that he could not as a homeschooler. I'm confused about who has tested him. The schools need to test him, they have to provide services they find necessary. (See my post above for requesting testing if you haven't already.) If you have a private evaluation, they have to consider it but do not have to follow it. You can request they provide an independent private evaluation if you feel their evaluation is incorrect. If they agree to pay for a private evaluation, the results are binding and they have to provide the services.

My advice for his first IEP is to ask for the moon. Make a list of the things you are unwilling to compromise on, the things you might have to compromise, and the things you're willing to throw to the schools. Fish for ideas anywhere you can. Include requiring use of a communication log, but make it as simple for the teachers to comply as possible. If you are concerned that he is uneducable, consider an assistive technology assessment. Don't sign the IEP until it has everything your son needs. The schools are under more pressure on this first IEP than they will be in the future. Think of it as a business deal.

Document if they are out of compliance with the IEP (once you get an enforceable one, agreed to by the IEP team.) Send a notice to the principal and applicable teachers (always send return receipt requested) requesting they comply. If they continue to be out of compliance with his IEP you need to write a letter to your state's education dept, copy your principal and teacher, requesting that they direct the school to comply with his IEP, and request compensatory services if applicable.

HTH!

 

[bairdbeth]

My DD was referred to OT in 2nd grade. She did not qualify for services from school as she had no IEP. We did private therapy for about a year and a half. The OT about 4 months in said that she felt DD's eyes did not work together. We went to a vision therapy which was expensive and not covered by insurance. She finally graduated after a year of services. Lucky for me I paid a flat fee for her to go until her eyes were okay. Her handwriting has greatly improved and her reading skills are at a 7th grade level (she's in 4th) She says that now the words don't move on the page and it is easier to read. The school sytems do not provide vision therapy as there are not many who are truly trained in this, nor is it an accepted therapy. There is alot of controversy about whether it works. For my daughter it did. Find a vision therapist in your area ( ask your OT) and see if they can work out a payment plan for you. It really did help my daughter. By straightening out those problems we were also able to determine that DD is also truly ADD. Her attentional problems could no longer be due to vision nor fine motor issues.