Alex is a hot dog

Alex goes to sensory integration therapy, and for the first time our insurance is actually covering it. This comes at a perfect point in our lives because he has been having a hard time recently. I think it is because he is putting all of his energy into learning the things we are doing in school, and his focus gets tapped out, and then he starts acting "sensory", as we call it. I am learning a whole new level of parenting.
At his sensory therapy lessons he spends an hour getting all of the sensory input he craves. It is amazing how much pressure he asks for...way more than I as an adult would ever be comfortable with, and sometimes more than the therapist feels she can safely give him. They come up with all sorts of ways to work with him, but the cutest is the hot dog. He dresses up as a hot dog, and they squish him in a huge bun-pillow, and put long yellow and red sandbags on top of him (mustard and ketchup) while he listens to a song about being a hot dog. The amazing thing is how still he becomes when he feels all enclosed and weighty. He gets a certain look in his eye, as if he is going far away. Usually he is fine for the next several days after therapy, and then he steadily falls apart until his next session. The therapist says it is fantastic that he is able to benefit from it for that long...most kids are falling apart again after less than a day. Her comment reminds me that there are so many reasons that Alex is a great kid--and I enjoy finding them out, one by one.
Inga's teacher has cancer. (Stay with me--this is actually related to my "Alex" topic, but you have to read on to the end.) For a while her doctors were uncertain how far it had spread, but now they are saying it is contained and if they perform a total hysterectomy she should be fine. Her surgery is scheduled for the end of October, so my little girl will have substitutes for a month. I am so glad this teacher's prognosis looks so good...she is a wonderful teacher, a fantastic person, and a friend of mine from church.
Another friend of mine also has cancer...melanoma. Of course I cringe when I hear that, especially around this time of year. She had a mole removed that turned out to be cancerous, and not benign. But it had not yet had time to spread, and so the doctors think they got it all and she should be fine. She sent out an e-mail to all of her friends letting us know the good news, and encouraged everyone to get any suspicious moles biopsied earlier rather than later. She was very insistent about it, since an early biopsy had probably saved her life. But I did not mind the authoritarian tone she took because she had every reason to warn me, and guess what...I'm going to go get a suspicious mole biopsied.
This is how the cancer digression relates: My son has FAS (Fetal Alcohol Syndrome). I love him fiercely, but I also have to stand by and watch every aspect of his life, especially his schooling, be affected by the choices his mother made while he was in utero. I have every reason to warn those I love to totally abstain from alcohol during their pregnancy, and if you compare my situation with that of my friend who has cancer, I should be able to take an authoritarian tone with my warning. But I hesitate. Social drinking is just so...fun. Who am I to spoil someone else's good time? And people can quote outdated medical articles stating that a little alcohol will not hurt the fetus. There are plenty of them out there, and doctors who still believe this is true. Who am I to argue with that? Except that I have lots of more recent articles I can refer to that prove that just one drink a week can affect the brain of a developing child. But no one wants to hear it. It's unpopular. It's hard. And people have been drinking during pregnancy since alcohol was invented. So they tell me that my sources are not professional. The Surgeon General, however, agrees with me, and the Center for Disease Control website states:

When a pregnant woman drinks alcohol, so does her unborn baby. There is no known safe amount of alcohol to drink while pregnant and there also does not appear to be a safe time to drink during pregnancy either. Therefore, it is recommended that women abstain from drinking alcohol at any time during pregnancy. Women who are sexually active and do not use effective birth control should also refrain from drinking because they could become pregnant and not know for several weeks or more.

Please listen, and spread the news.

Vulnerable

OK, I am about to be really vulnerable. You can tell because I began this post with the word "OK".
Last night I went scrounging around the internet looking for some information on FASD (Fetal Alcohol Spectrum Disorder, what Alex has). I was doing this because I know I have recently read many research studies claiming that even a little alcohol drunk during pregnancy can have adverse affects, and I was discussing it with some friends but of course this is a radical claim and I had not memorized my sources so I was trying to see if I could re-find those links. I found plenty of articles and lists and even some YouTube entries (the best one was http://www.youtube.com/watch?v=uip8sv9tCKw), and as I was calmly reading through everything I started to bawl. Not just cry, bawl. I think everyone who reads this blog knows me really well (I would love to know how Mandy knows who reads her blog, that sounds really handy), so you know that I don't do this crying thing often. The last time I cried was when I trusted a friend to watch my kids and she nearly killed them through willful negligence and the very real thought of them dying made me lose it (coupled with total and complete anger toward my friend the likes of which I have never experienced before). Anyway. Back to crying. I was crying for Alex. I was crying for what had been done to him, for how he struggles every minute of every day just to live life and how "normal" will forever be unachievable for him. As he gets older he is going to become more and more aware of the invisible gap that exists between him and everyone else he knows, and already I see him gazing around in bewilderment when he loses control or can't remember something he knows he ought to know.
I've read all these things before, I've even seen a few very moving videos on FASD, so what triggered this? And what is it that was triggered?
I know what triggered it--I have a friend that encouraged another friend to drink while pregnant, because it was really "no big deal" if you only drank a little each day. As for what it is that hits me so hard that I had this sort of reaction...I've been aware all along that Alex's birth-mother's drinking is the cause of his issues, of course, but I guess the total helplessness of my little guy in utero while his mother poured liter after liter of alcohol into her son just sort of hit me. For some reason when I saw the healthy and FASD brains compared side by side (also see YouTube video), the report of Alex's initial physical exam came into my head, the one where they did an ultrasound and there was so much fluid where his brain should have been that they called it "hydrocephalus" despite Alex's very small head. That was his mother's doing. I am sure she didn't mean to do it, I am sure she was struggling with her own awful life and she couldn't get up enough hope or energy to quit drinking and it is very likely that she was unaware of the awful effects her drinking was having on her unborn child. I have no beef with her. Just overwhelming pity for Alex. But my friends, the ones who were comparing notes on how much they drank and were saying these things in front of another friend of mine who was still pregnant (yes, everyone seemed to get pregnant this year) made me feel so frustrated. Alcohol is a known tetarogen (substance causing birth defects). They see that Alex and Sam are two years apart and yet Sam is taller and heavier than Alex. They see that Sam's speech development after two months home from his orphanage is already surpassing Alex's after he has had two years of speech therapy. They see Alex who can't sit still to save his life despite the fact that he is denied every fun or even typical food known to every other child in the church. Of course he had a lot of alcohol in his system during his development but his issues are extreme. By logical conclusion therefore a little bit of alcohol will give you a little bit of his issues...but which ones? Who knows where the boundaries lie? No one. Why do they have to push that envelope? Who says, "oh, a little thalidomide won't hurt this evening, honey." I am certain that Alex's mother didn't think these things through because she was ignorant. But my friends are not.
So I crept into Alex's room and held him and cried and he was so light and felt so fragile and that made me cry even harder because that, too, comes from his mother's drinking. Please don't misunderstand me. I am not crying for myself. We chose him, I am excited to be his mother, he challenges me in ways no one else can and I am grateful for it. I just needed that moment to grieve for him. And now I am finished, and can move on.
Don't drink when you are pregnant. http://www.come-over.to/FAS/LowDose.htm.