Finding help for the children
Written on September 4, 2006 – | by Lois (admin)
A reader named Carol writes:
This has been very frustrating for my son-he has Intermittent Exptropia- we have tried COVD, UCLA, you name it and Yes he has a visionproblem-but everyone wants $$$$$ A good 5,000 - 10,000 We are not rich, what gets me thought is that if I were divorced form my husband-we could be LOW INCOME and VSP would step in the public schools would step in - but of course he has been diagnosed per the shcools as ADD/ADHD-its easier to pop apill then see the real problem, this also has effected the way the is treated in shcool being labeled-now all we have is a frustrated son whom feels hatred and disgusted!!
It breaks my heart that your child is not getting help for his exotropia. My diagnosis is intermittent exotropia as well. I don’t want to see any child go through life, as I did, without receiving help with their strabismus.
Carol, please don’t give up. There is great push among eye specialists to work toward ensuring that children with vision problems can receive help. New legislation continues to be introduced, and laws are changing in many areas.
Here are some ideas:
- Last month, I did a write-up on P.A.V.E. Check their website to see if there is a local chapter in your area, and if so, ask if they are aware of how you may get help.
- Join a support group. You can find a number of support groups at Yahoo Groups, including our new Eyes Apart Strabismus Support.
- Strabismus Hope is another group we started recently for those who would like help from a Christian perspective.
Perhaps others will offer suggestions of help for your son in the comments area. Please check back often.
[Groups updated 10-23-06]
Photo Credit: Janet Goulden
3 Responses to “Finding help for the children”
By Kelly H. on Sep 4, 2006 | Reply
Hi Carol,
I am so sorry you are going through this with your son. I know that there have been a few parents on Prevent Blindness America www.preventblindness.org forum that have come on saying they didn’t have the money for all of this and Mr. West from the Prevent Blindness group came on there and told them to contact him personally about getting financial help for this. Try to contact Prevent Blindness and see if they can help you with this. They are great. I hope this gets better for him. How old is your son? Does he wear glasses or patch? What is going on right now with his eyes? Let us know.
Kelly H.
www.bjortandcompany.com
By Diane on Sep 22, 2006 | Reply
I am so glad other people are in the same boat as my husband and I are in. My
two year old son was diangosed yesterday with strabismus with amblyopia. He
is going to need surgery in several months. My son does not have health insurance as
group health insurance is so expensive but we make to much to get state help. It
is very frusturating because you would do anything for your son. Please if you or anyone
else find out where we can get help to pay for medical expenses let me know.
Diane W.
By Carol Edmonds on May 15, 2007 | Reply
I have not written in a while — but in the past 6 months - we have been doing vsion therapy at home and paid out of pocket - my son has been very faithful with this - we also have a extra 100 sessions added on how I dont know! But now dealing with the publci school system and recently finally doind a vision test and found his vision at 30/30 and also after viewing 3 figures on a screen my son could on see the second and third figures - so he has a blind spot - what is really ruing my child is the schools are so determined they know it all - and recently having a insructor confront me and diagnosis of my son - HE HAS ADHD - all you need is Ritalin from your doctor - this obviously will never end! what gets me is my son has a heart murmur and has had febrile seizures - they have no background on his medical history - thank god - I am smart enough - but boy they make it tough on the parent and the child!!!