In retrospect, if I had to do it all over again, my best advice is this:

• Be very complete and thorough when answering the questionnaires you will be sent. Take time to explain every item in detail and don't be bashful about using additional paper. In fact, I used a separate piece of paper for each question and numbered them to correspond with the questionnaire and used my word processor to compile a neat and legible report and....it leaves you with a file you can return to if needed.

• When you initially apply, do not leave it in the hands of others to insure that Social Security gets all the information they need to make an accurate and fair decision in your case. Gather as much information from every source that has documentation on how ADD/ADHD and any related disorders or issues affects your child's ability to function, day to day activities, and his/her ability to operate as other children. If you can do this before hand and send it in with your application, all the better.

• Keep tight tabs on the progress of your application. I was able to call the Main Social Security Office to find out if my son's case had been assigned, and to whom it was assigned and also left a message for that worker to contact me.

• I kept in close contact with my doctors, asking them if they had been contacted by social security and followed up to make sure they sent the records being requested.

• Without harassing the worker about approving the case, I simply kept in contact to ensure that those contacted were complying with social security's requests. The worker was more than happy to tell me who had complied and who had not and I was able to contact the individuals and agencies involved and be sure they send the information requested out in a timely fashion. I did this because I learned during the appeal that those contacted for information on your child are in no way obligated by any laws or rules that they comply with any request for records. If any agency should fail to send in requested info, Social Security will make it's decision based on what they have which may not be enough.

• Last but not least. DO NOT be afraid to stand up for your child's rights! YOU are his/her only advocate. In the end, I went to my Congressman to be sure that my child was getting an impartial, unbiased and fair judgment in his case.

One more note before I get off my soapbox :) Another valuable lesson I learned was that when you initially apply for Social Security benefits for your child, they have a certain time frame in which to open/close the case. When you appeal a decision, your case comes under a whole new set of guidelines and rules and and can sit on someone's desk for months before it becomes active again.

I was told off the record, by a social security worker, that I would have been better off had I chose NOT to appeal the decision, waited the allotted time limit, and then just re-applied. This would have placed the case back at the beginning, with the original time table and minus, any bias or judgmental input from previous workers. The down side to this is that if you choose to do this, you lose your original filing date and you start over which will affect what Social Security will owe you once you are approved.

For the latest information on Social Security benefits for children with disabilities.

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