After a long journey I have finally found some great resources for parents of special needs children. My son has Mitochondrial Complex I disease, as well as a Co-enzyme Q10 deficiency and finding grants and good informative information has not been so easy.
These are several websites that have been great. Some have grants for medical equipment, wheel chair ramps, even assistance with the cost of diapers. This list is not long and some are state specific and others are not. As I find new sites I will gladly share them.
http://www.weightedblanket.net/
http://parentingspecialneeds.org/
http://www.starlight.org/
http://www.crdnetwork.org/
http://www.globalgenesproject.org/
http://fragilekids.org/
http://kiddosclubhousefoundation.org/
http://www.fodac.org/
http://www.angelflight.com/
http://dare-to-hope.org/
http://www.umdf.org/site/c.otJVJ7MMIqE/b.5472191/k.BDB0/Home.htm
Tuesday, January 10, 2012
Thursday, May 19, 2011
Why is this taking so long?
Back in December of last year I applied for SSI for Liam. It took me a long time to decide it was the right decision to make, but I finally realized that any financial help for Liam is a good thing. Since then I have heard almost NOTHING from them. One letter back in December requesting more information on him with a telephone number. That's it! I call several times a month to check the status of his case and get no information.
What is taking so long? My son was born having seizures every 15 minutes. He spent a month in the hospital and we didn't have him seizure until 2 months after he was born. We spent months looking for a cause and come up empty. However, in April we found that Liam has a chromosome duplication, specific to the 8th chromosome. Maybe we have found our answer?! We still don't know. Meanwhile we are still waiting.......on Social Security. When I called last week I finally found out that the Doctor who originally got his medical information is having to review it again. Forgive me, but what the flippity flip? My son has medical records that are probably as thick as an encyclopedia. What's the hold up here? It seems pretty simple to me. My son is going to be 1 year old on Saturday and he can't talk, crawl, hold objects in his hands for any length of time, sit up without support or eat any table food. He also is going to have eye surgery soon to correct his Strabismus. It seems to me that this would be a simple decision. Am I just a crazed mom? Maybe, but considering all my son has been through in his life time so far, and seeing how we don't know what his long term outlook is, he should be receiving some kind of assistance.
What is taking so long? My son was born having seizures every 15 minutes. He spent a month in the hospital and we didn't have him seizure until 2 months after he was born. We spent months looking for a cause and come up empty. However, in April we found that Liam has a chromosome duplication, specific to the 8th chromosome. Maybe we have found our answer?! We still don't know. Meanwhile we are still waiting.......on Social Security. When I called last week I finally found out that the Doctor who originally got his medical information is having to review it again. Forgive me, but what the flippity flip? My son has medical records that are probably as thick as an encyclopedia. What's the hold up here? It seems pretty simple to me. My son is going to be 1 year old on Saturday and he can't talk, crawl, hold objects in his hands for any length of time, sit up without support or eat any table food. He also is going to have eye surgery soon to correct his Strabismus. It seems to me that this would be a simple decision. Am I just a crazed mom? Maybe, but considering all my son has been through in his life time so far, and seeing how we don't know what his long term outlook is, he should be receiving some kind of assistance.
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