Just Diagnosed? Where to go now?


Your child has just been diagnosed with Nystagmus, you have no idea what that means or where to turn to, let alone where to go next. First, begin trying to figure out what is the cause of the child's Nystagmus. This means MRI, Genetics, and a detailed visit with the Ophthalmologist. Find out what State Aid is offered in your area, call the local school for the blind/visually impaired and find out what services if any they offer for your child’s age. Find an Occupational Therapist in your area that knows about vision therapy or will at least do OT with your child to help prevent them falling behind in their growth and development. If you can’t find one see our post about making your own kit and do it with the child yourself. It’s never too early to start!

Now from here I can only speak for patients diagnosed with Albinism.

When you receive the albinism diagnosis you need to first start sun protection for your child. If you’re not already involved with the early intervention program in your area you need to be now! If you have not already done so after the Nystagmus diagnosis now would be a good time to begin collecting or purchasing toys that are textured, large print, large objects, or have high contrast colors so that they are easier for your child to spot and take interest in. Then I strongly urge you to connect with NOAH and other parents going through the same journey as you and your child are now. These will help you in many ways and if you still have free time after that start with these few posts to show you where we went from there. Learn all you can about your child’s condition, you are their source of knowledge and they won’t let their vision slow them down if you don’t.


Helpful Posts in the Beginning:
Arkansas School for the Blind Early Intervention Program
The Fairy God-Mother Syndrome
Nystagmus
Liam’s First Day of Therapy
At Home Vision Therapy Kit
New and Improved Highchair
Puzzled?
The Never Ending Scab
High Contrast Books
Sun Protection for Kids with Albinism
Window Tinting for Photophobia and Window Tinting for OA
There's an App for That!
Sensory Overload
Vision Therapy Update
FAQ, Nystagmus, OA, and Oculocutaneous tabs

Also, all of these blogs deal with some form of Albinism or Nystagmus and are great reads to help educate you on these conditions.

http://www.livingwithnystagmus.info/
http://nystagmusblog.co.uk/
http://happyashleigh.blogspot.com/
http://www.thewilltosee.com/

Helpful Links



Helpful State Aid                                     

A lot of people ask us how we attained all of our State and Government Aid for Liam so I thought we would address that here. Here is a list of the assistance we were given in our state (Arkansas) as well as a list of the Schools for the Blind in each State.


Early Intervention Services - Provide in home evaluations, and therapies for the child at no cost to the parent. This is how Liam started getting his Vision Therapies at PedsPlus in Conway, AR to ensure that he does not fall behind before he starts to kindergarten. They also provided us with pamphlets and brochures about raising a blind or visually impaired child and the names of any agencies/charities or organizations that offered help to parents in our shoes.
*Per the DHS website for Arkansas:
“The program helps locate, coordinate, and fund an array of 16 services to assist the child in developing to his or her fullest potential.
These include:
Assistive Technology
Speech Therapy
Physical Therapy
Occupational Therapy
Health Services
Special Instruction
Service Coordination
Social Work Services
Nutritional Services
Transportation
Vision Services
Multi-Disciplinary Evaluation
Medical Diagnostic Services
Psychological Services
Nursing Services
Audiological
Family Training, Counseling and Home Visits
Respite
The program also provides supportive services to families to assist them in understanding their child’s developmental abilities and helping to assist their child in developing”
Contact Department of Human Services (DHS) in your county and ask if they have Early Intervention Services for disabled pre-school aged children.

Social Security Income- (SSI) Any child deemed legally blind or blind who also has a family on a small or fixed income (amount varies per state) is eligible to receive extra income to use for the child’s special needs. (Money can be used towards: special devices for visual aide, walkers, canes, etc. Also for payments towards the child’s day care, transportation, or home. Anything that can be justified as for the child’s special need or to better their environment or education is usually deemed okay. They will provide a list if you are approved for SSI before first payment is issued.) We at first thought we would never need this we made enough to raise Liam ourselves but it proved to be handy his low vision aids (which cost several hundred dollars each) and for conferences to NOAH and other organizations that help us learn about his needs and how to help educate him in the future. It also helped with his sun protection (window tinting, shades, etc) and glasses for him. You just never know!
For more information on this you need to contact you Social Security Office in your county and ask about an application to apply for SSI for a disabled child. You can also apply online but we found that when we did it told us we were not eligible but after filling out all the paper work with the help of one of the Social Security Office’s aids we were told that we actually did qualify. So I would advise anyone seeking this to go directly to their local office for assistance in filling out the long application.

For Vision Therapy Services- Contact any of your local therapy centers that have Occupational Therapists on staff to find out if they are trained in Vision Therapy. Early Intervention did not know which ones if any had this so we had to contact them ourselves and then report back to them with this information. (Most of them will need a referral from your pediatrician.)

For any companies, charities or organizations see our Resources List on the left hand side of our main page. – Your Department of Human Services (DHS) office should have a list of these for your home area as well.

Schools for the Blind and Visually Impaired- These schools usually offer some sort of program for children 0-3 years old before they are ready to enter a pre-K program at their school or a public/private school. Our local school f/t blind offers this program and comes to our home once a month to do vision therapy sessions with Liam and check his progress so that he does not fall behind before he starts school. They also invite us to all of their activities and give us information of upcoming events with organizations like NAPVI (National Association for Parents of children with Visual Impairments) that are connected with their school. They offer the program even if the child does not use their school in the future and even offer to come show the child’s public school the best way for him to learn. (Move that there, do this here, make that bigger, etc.) To further help we assembled the list below of all of the Schools f/t Blind that are available (TO OUR KNOWLEDGE) in each state. Contact the one closest to you to find out if they offer an early childhood program for your child’s age.

Alabama- Alabama Institute for Deaf & Blind- Talladega, AL - http://www.aidb.org
Alaska – Alaska Center f/t Blind and Visually Impaired - http://alaskabvi.org
Arizona – Arizona State School f/t Deaf/Blind – Tucson, AZ – www.asdb.az.gov
Arkansas –Arkansas School f/t Blind–Little Rock, AR -www.arkansasschoolfortheblind.org
California – California School f/t Blind – Fremont, CA – www.cbs-cde.ca.gov
Colorado – Colorado School f/t Deaf/Blind – Colorado Spring, CO – www.csdb.org
Connecticut – Oak Hill/ Connecticut Institute f/t Blind – http://www.ciboakhill.org
Delaware – NONE FOUND
Florida – Florida School f/t Deaf/Blind – St. Augustine, FL – www.fsdb.k12.fl.us
Georgia –Georgia Academy for the Blind – Macon, GA -www.gabmacon.org
Hawaii –Hawaii Center f/t Deaf & Blind – Honolulu, HI – www.hcdb.k12.hi.us
Idaho –Idaho School f/t Deaf/Blind – Gooding, ID – www.isdb.state.id.us
Illinois –Illinois School for the VI – Jackson, IL – www.isvi.net
- Hadley School for the Blind – Winnetka, IL – www.hadley.edu
Indiana – Indiana School for the Blind – Indianapolis, IN – www.isb.butler.edu
Iowa – Iowa Braille & Sight Saving School – Vinton, IA – www.iowa-braille.k12.ia.us
Kansas –Kansas State School f/t Blind – Kansas City, KS – www.kssb.net
Kentucky –Kentucky School f/t Blind – Louisville, KY – www.ksb.k12.ky.us
Louisiana – Louisiana School f/t VI – Baton Rouge, LA – www.lsvi.org
Maine – NONE FOUND
Maryland – The Maryland School f/t Blind – Baltimore, MD – www.mdschblind.org
Massachusetts – Perkins School f/t Blind – Watertown, MA – www.perkins.org
Michigan – Michigan Department of Education- Flint, MI – www.michigan.gov
Minnesota – Minnesota State Academy f/t Blind–Faribault, MN– www.msab.state.mn.us
Mississippi – Mississippi School f/t Blind – Jackson, MS – www.msb.k12.ms.us
Missouri –Missouri School f/t Blind – St. Louis, MO – www.msb.k12.mo.us
Montana – Montana School f/t Deaf/Blind –Great Falls, MT – www.sdb.state.mt.us
Nebraska –Nebraska Center f/t Education of the Blind and VI- Nebraska City, NE – www.ncecbvi.org
Nevada – NONE FOUND
New Hampshire – NONE FOUND
New Jersey – St. Joseph’s School f/t Blind – Jersey City, NJ – www.sjsnj.org
New Mexico – New Mexico School for the VI – Alamorgodo, NM – www.nmsbvi.k12.nm.us
New York – Lavelle School for the Blind – Bronx, NY – www.fdncenter.org/grantmaker/lavellefund/index.html
New York Institute for Special Education – Bronx, NY – www.nyise.org
NY State School f/t Blind – Batavia, NY – www.vesid.nysed.gov/specialed/nyssb/home
North Carolina – The Governor Morehead School – Raleigh, NC – www.governormorehead.net
North Dakota –North Dakota Vision Services- School f/t Blind – Grand Forks, ND – www.ndvisionservices.com
Ohio –Ohio State School f/t Blind – Columbus, OH – www.ossb.oh.gov
Oklahoma –Parkview-Oklahoma School f/t Blind –Muskogee, OK – www.osb.k12.ok.us
Oregon –Oregon School f/t Blind – Salem, OR – www.ode.state.or.us/osb
Pennsylvania –Overbrook School f/t Blind – Philadelphia, PA – www.obs.org
Western PA School f/t Blind – Pittsburgh, PA – www.wpsbc.org
Rhode Island – NONE FOUND
South Carolina –South Carolina School f/t Deaf/Blind – Rd. Spartanburg, SC – www.scsdb.k12.sc.us
South Dakota – S. Dakota School f/t Blind & VI- Aberdeen, SD – sdsbvi.northern.edu
Tennessee –Tennessee School f/t Blind – Nashville, TN – www.tsb.k12tn.net
Texas –Texas School for the Blind & VI – Austin, TX – www.tsbvi.edu
Utah –Utah School f/t Deaf & Blind – Ogden, UT – www.usdb.org
Vermont – NONE FOUND
Virginia –Virginia School f/t Deaf/Blind at Hamptom, VA – www.vsdbmh.virginia.gov
Virginia School f/t Deaf/Blind at Staunton, VA – www.vsdbs.virginia.gov
Washington –Washington State School f/t Blind – Vancouver, WA – www.wssb.wa.gov
West Virginia – West Virginia Schools f/t Deaf & Blind – www.wvsdb2.state.k12.wv.us
Wisconsin –WI Center for the Blind and VI – Janesville, WI – www.wcbvi.k12.wi.us
Wyoming – NONE FOUND
(If you see anything that needs to be corrected or added to our list please let us know! Thanks!)















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