We are the lucky ones. John was diagnosed at birth, placed in my home as an infant, received all the needed services and intervention supports through his growing up years, and has pretty much avoided the serious secondary disabilities that we learn from Ann Streissguth are so common among individuals with FAS disorders. It has not been easy. I do get burnt out sometimes. I get hundreds of emails from desperate families each week. What keeps me going is the notes of appreciation I get from the parents who find the help they so badly need on my website.

But I'm not here to testify on my own behalf. Nor on John's or Sheena's behalf. I am here to speak for all the families who could not come to this conference. I speak for the families whose children do not have enough physical symptoms to get a diagnosis, who have not qualified for services, who are at a loss with no support systems, except for what they can get through our website and support groups.

We all know about the primary disabilities of FASD. Ann Streissguth has taught us about the secondary disabilities that occur. But there is a third layer of disabilities, that affects the families who are struggling with affected children. Among these tertiary disabilities are stress, depression, divorce, fatigue, desperation, isolation - the isolation is so painful - and burnout.

It is difficult to advocate for these families when there are no services available to them. And I find that I am advocating more and more often in the criminal justice system. There is an unspoken fear that is a heavy burden for each family that I support. That fear is "What is going to happen to my child?"

Families ask me many questions, and I often have the answers for them. But some of their questions I cannot answer. So I share these questions with you.

What do I tell the adoptive parents who cannot access the birth records in order to document maternal consumption of alcohol, and therefore cannot get a diagnosis for their child?

What do I tell the parents who say their children don't qualify for services, even when they have serious problems with learning and behavior?

What do I tell the birth mother who has admitted that she drank during pregnancy, is now in recovery, who takes her affected child to the doctor, who is too embarrassed or uncomfortable or in denial, who says there is nothing wrong, when the mother clearly knows there is?

What do I tell the step-mother who works full time, who has been ordered by the court as part of her teen son's probation to provide him with 32 hours each week of community service work outside the home, without providing a program or a supervisor?

What do I tell the mother who has been diagnosed with terminal cancer and does not have services set up for her teenage affected daughter?

What do I tell Sheena when she says she wants to marry John and live in an apartment with him, when she does not qualify for residential services?

What do I tell agencies who want me to train their staff but do not have any funding to pay for the training?

What do I tell the father of the children he and his wife adopted, who have FASD but were not told this when they adopted, when his 15 year old son with FAS shoots and kills his adoptive mother, and the court has already decided to try the boy as an adult?

What do I tell the adoptive family of the young man who burned down 500,000 acres of Apache Reservation forest, setting his tribe back economically 100 years, when he only wanted to be a fire fighter hero?

What do I tell my son John, when he asks me who will advocate for him after I die?

Now I have a few questions that I know the answer to: Do you know when FAS Awareness Day is? It is on September 9th. Are you going to participate in an Awareness Day event? Do you know how to find out about FAS Awareness Day? On my website: www.fasstar.com. When you get home, look it up, send me a note.

Thank you for listening.