More Screams

AAAAaaaaaiiiiieeeee!!!!!!!!

Okay, I feel better now.

If you are familiar with my web page and with my philosophy of successful intervention for FAS/FAE, then you have read about my SCREAMS model of intervention strategies:

• Structure with daily routine, with simple concrete rules
• Cues (again and again and again), can be verbal, audio, visual, whatever works
• Role models (family & TV), show them the proper way to act, children mimic us
• Environment with low sensory stimulation (small classroooms, not too much clutter)
• Attitude of others, understanding that behavior is neurological, not willful misconduct
• Medication, in proper dose and combination, is helpful to 95% of kids with FAS/FAE
• Supervision - 24/7 (lack of impulse control and poor judgment at all ages)

Well, I am just so frustrated that these intervention strategies seem to be so difficult for people to put into place! I'm not talking about the parents, who for the most part, once they understand the nature of the disability, are willing to take the steps necessary to help their children achieve the success that might be possible. I'm talking about the parents and professionals who hear the explanation, but who are unwilling to do what is needed to make sure the safeguards are in place to protect the child from the risk inherent in FAS disorders. I am so frustrated that I just need to scream. You too? Okay, altogether now, this time you can join in:

AAAAaaaaaiiiiieeeee!!!!!!!!

Now doesn't that feel better? As a further expression of my frustration, I have compiled a new list of SCREAMS, this one to reflect all the obstacles that just make me want to, you know, scream! I'm sure you will be able to relate to at least some of these:

• Systems that don't work. This includes the education system, the DD system, the mental health system, the child protection system, and the criminal justice system. They were not designed to meet the needs of the person with alcohol effects. Although I try not to criticize the system, because sometimes it does work, there are too many times that it doesn't. Even then, I have chosen to work together with the system, to change it from within. But I still find myself frustrated, as change takes time, and in the interim, my child and others continue to fall into those cracks.
• Cracks in those broken systems. The faulty IEP; the program that our child is not eligible for; the funding that's not available; the waiting list for services. Why do we have so many cracks? Not enough money to fund services? The money is there, it is just not being appropriated to the services our kids need. Ignorance? Yes, in spite of the published information that has been available for over 25 years. Denial? Oh yes, probably the biggest reason of all. Denial of anything less than a diagnosis of "full FAS." Denial that alcohol abuse is a major problem in our society. Denial that our kids have legitimate problems or need services. Denial on the part of the affected individual that he or she has a disabling condition. How do we mend the cracks so our kids don't get lost in the system? It usually boils down to the law, where decisions are made about what programs are funded, who is eligible, how many tax dollars they will be appropriated. This means educating our legislators and convincing them that they need to vote for funding for programs that will adequately meet the needs of our kids today and in the future. Kind of hard to do when the alcohol industry has a grip on our lawmakers, yes even the "good" ones are recipients of the alcohol industry's generosity. I hate politics, but this is the arena where the battle will be won or lost. Now with fewer dollars to go around, the competition will be fierce.
• Role models for unhealthy consumption of alcohol. This means television characters, movies, billboards, Uncle Jack, the lady next door. It might even mean you or me. Most people drink. Most have more than once consumed more alcohol than is healthy. (What's healthy? One drink a day for a healthy woman, two drinks a day for a healthy man.) Have you ever exceeded that amount? Have you ever been intoxicated in front of children or other vulnerable persons? What kind of role models are we for our affected children?
• Environment. Alcohol poisoned our children's environment before birth, and it continues to poison their environment in many ways now, as "pushers" encourage our children to become normalized into our booze guzzling society. If getting drunk is normal, I don't want my child to be normal. I don't want alcohol in my child's environment. That sure does eliminate a great deal of social contacts. Difficult to do? Yes. Impossible? No. Just a matter of making a choice and expending the effort to keep the commitment. My son is being raised in an alcohol-free environment. When it comes to drinking, can you say "I PASS"?
• Attitude. We are all too aware of the misunderstandings about FAS, the misinterpretations of our children's behavior. The attitude is that they are "problem kids" who need more discipline. The attitude is that their problems are only psychological and they just need more control, that they need to LEARN how to act their age. If only it were that easy.
• Mother-blaming. First we blame the birth mothers for "child abuse in the womb." Please! What about the boyfriend who bought her all the drinks? What about the friends who said, "Oh just one more." What about the doctor who said, "One or two drinks a day won't hurt." What about the guy who sexually abused her to the point she needed to self-medicate to ease her pain? What about the party hosts who served drink after drink without considering the possibility that the drinks were being served to an unborn child? Next we blame the foster mothers. They didn't bond, they were abusive, they didn't give enough affection, no wonder the kids have attachment disorders. Well, most foster mothers are trying the best they can, and it is very difficult to bond with a child whose brain center for attachment is damaged. Last we blame the adoptive mothers. They are obsessive in their parenting, they are overprotective, too lenient, too strict, and they certainly don't know how to let go. If a child displays such inappropriate behaviors, they MUST have learned that at home! Sorry, I'm getting carried away. Can you tell I've been a victim of mother-blaming? You too huh?
• Serendipity. I use this word to cover Fate, Chance, Divine Intervention, and God's Will. It is the target of my anger. It is the stupid answer to the question we all have asked, "Why?" We want to know why my child has to have this horrible disorder? Why did I end up being the one to take care of this child? Why does there have to be such a curse like FAS/FAE? It makes some people feel better to say, "Oh it must be God's will - this is how He made this child." I say, "No!" This child was not created with FAS/FAE. This child started out with a normally developing brain/body that was irreversibly damaged by the direct exposure to alcohol during that developmental process. This was not God's will for parts of a child's brain to be destroyed. If it is not God's will, then it must be fate. Or for those who so believe, God allowed it to happen. Whether you believe in God or Fate, as a parent of a child with FAS/FAE, you probably have become angry at Somebody or Something for the situation you find yourself in with this innocent child. If you believe it is a matter of choice, it certainly isn't the child's choice, nor the parent's. Not even the birth mom's. There is no birth mother on earth who would choose for her child to have FAS/FAE. She did not choose to be alcoholic, she did not choose to be raised in an alcoholic, abusive home. Well, the adoptive parent certainly made a choice, especially those of us who signed up for children with special needs. But even we didn't count on having to carry the heavy burden of FAS parenthood far beyond the 18 years of childhood. And those of us who did still are angry at the unfairness of it all. To whom shall we direct our anger? At God? At women who drink? At the alcohol industry? At alcohol itself? Serendipity is defined as "the faculty of making fortunate discoveries of things you were not looking for." Well, we sure weren't looking for this sort of trouble! Fortunate? Well, after we get past our anger, most of us are grateful for the beauty we find in our child's spirit. When we get past our grief of losing the dreams we had for these children, we can see the many blessings we have been given through them, the lessons we might not have learned otherwise. Then we can smile at the funny FAS stories and feel gratitude for meeting other wonderful parents who really understand.

Now go and check out the links in this article. And when you are done, those screams will surely have changed to smiles! And when you need to scream, remember that you probably have a good reason. And when you feel angry, instead of screaming at your children, or anyone else, channel that anger into action, and start patching up some of those cracks. And when the going gets tough, remember that we are here for you with a shoulder to cry on and to let out a few whooping screams together.

--Teresa Return to the FAS Community Resource Center
Fasstar Enterprises