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resources for special needs
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Joined: 05 Oct 2006
Posts: 114
Location: Alabama

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While speaking to Diane Muth, getting guidance for next year's planning, I mentioned some of the resources our family has discovered and she asked that I post this here for others that might find it useful.

We are working with a relative who is special needs and have 6 children (5 of whom had vision problems). We have direct and positive experience with these resources and our developmental optometrist. In all cases, the children have made huge leaps forward. In the case of the children whose problems were vision only, we no longer have any difficulties and do not need to do any further exercises or therapy. We simply visit the optometrist once a year for normal eye exams. This improvement has held for over 5 years for the first of our children to receive vision therapy and a minimum of about 3 years for our last to finish therapy. The special needs child has just started with his program (been in for about 8 months and the progress has been phenomenal). The difficulty in finding help, getting accurate assessment of needs and not just getting labeled is such a common experience with so many of us whose children have special challenges and our hope is that in sharing the resources that we are aware of, it might help at least a few other parents considerably shorten the time of their own search for answers. We do have to drive considerable distance for the assistance and it is often very expensive but it has been invaluable and we have found ways to work with the therapists and providers to make things affordable.

This resource (parents active for Vision education) describes many different kinds of vision problems that involve children with 20/20 acuity. It also describes how to find an optometrist who is familiar with developmental vision issues. While PAVE insists that these problems are all developmental and not hereditary in nature, we personally disagree as we had none of the risk factors but do have a very strong history of amblyopia in the family for many generations. The biggest support in this site are the brochures that describe symptoms and compare them to things like ADD, Sensory Integration Disorder, Dyslexia and such. It also tells you things to watch for as you work with your child - closing an eye, holding books extremely close to the face but still testing 20/20, etc.. There are brochures for parents and for teachers looking for how to distinguish between differences in readiness and a vision problem . It also explains that not all optometrists are familiar with these kinds of things and the tests that should be done. I know that none of the local optometrists could help our children and all told me nothing was wrong. We drove 3 hours to an optometrist that was a Fellow of the College of Optometry Vision Development and he was able not only to diagnose but to show us physical reasons for the diagnosis. He did extensive follow up testing (2 hours worth) to determine all the developmental impacts that the eye muscle weakness had in other areas of vision. We know that some optometrists toy in this area and give vision therapy a bad name so interview the folks you plan to use and ask lots of questions. When you find a good doctor, the results are amazing!

This is the web for the International Association for Christian Neurodevelopmentalists. They work with a wide variety of learning disabilities and help homeschoolers design integrated academic/therapy programs for their children. Our particular first hand experience is with Hope And a Future which is one of the neurodevelopmentalists associated with ICAN. They are Christian and a lot of the reading resources are Amish, but they have worked very well with local Catholics here and we substitute our own things for those that are Protestant in flavor. We have worked with my relative now for about 8 months. The support through this organization is tremendous. While the theory behind what they do made sense to us, the proof is always in how well it really helps your child. We have been very impressed with marked improvements in a wide variety of areas - those that were previosly addressed with therapy and also academic areas. Speech therapy, physical therapy and occupational therapy that this child received through the schools never had as much impact as this program alone. The only thing, so far, that we have been leary about has been the pleoptics. We have substituted the vision therapy for this and that has been fine with them. They still test for and find progress in this area so both must reach the same end, we just think the vision therapy is safer. We have found that Hope listens very carefully to parents observations, are charitable and professional and so far we have not experienced any kind of anti-Catholicism.

I have found them extremely helpful in answering questions between evaluations (They do have permission from the parent to reveal information and work with all of us who are working with the child). The program is designed for the parent to be the therapist and they design the program, explain the exercises necessary and evaluate in person every 4 months, though we call in between times. I know that some others who use the program continue with some therapies and this is taken into account when Hope helps design the program. Hope And A Future is based in Ogden, Utah, but they do travel on weekends around the country to do the evaluations in person. You would find the nearest evaluation site to you and use that set of evaluators. We drive about 1 1/2 to 2 hours every 4 months.

We contacted this organization and were impressed with the theory behind the program. They are the National Association of Child Developmentalists. It is secular. We did not use them as the closest evaluation site was 3 hours drive and through much heavier traffic. We know someone with a Downs Syndrome child who does/did use them and led us to them and to ICAN. Those behind Hope And a Future were evidently trained by NACD so they are doing what appears to be essentially the same kinds of things. I guess it just depends on cost, location of evaluations and your own experience with how accomodating they are with evaluation times.

I hope that this proves of some use. I am happy to share privately in more detail if you have further questions. Obviously you'd need to go through Kolbe for contacting me personally.

Sun Apr 13, 2008 9:36 am View user's profile Send private message
Megan Lengyel

Joined: 08 Aug 2006
Posts: 2443
Location: Alpharetta, GA; formerly, Napa, CA; originally St. Louis, MO

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Thank you Janet. I will be moving this post to the Learning Disabilities forum.

Megan Lengyel
Kolbe Academy Home School
Online Academy Director
Tue Apr 15, 2008 5:31 am View user's profile Send private message Visit poster's website
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