Introduction – This is a Guest Blogged piece, written by a father in what is a far from unique situation and yet a situation we hardly ever discuss. Its humbling, touching, sad and affecting. Its also a microcosm of how fractured the autism community has become and how some are prepared to accept dangerous treatments where others are simply not. I hope you can give the author some feedback after you read this piece. Kev.
Broken Families, Not Broken Children
By a Proud Father
I’m sitting here, having just put my son to bed, and dreading having to take him over to his mother’s in the morning. This is my long weekend with him – Friday evening until Tuesday morning – and they go by so quickly. I’ll see him in a couple of days for 24 hours before he’s gone again for another 4 or 5 days. It’s a convoluted mess, but the best I can do right now. He’s handling it very well and we have way too much fun when we’re together. I don’t know about the other days, and I try hard not to think about them too much. I hope he’s as happy as he seems to be here.
You always hear about the high divorce rate among parents of autistic children. I guess my assumption was always that one of the parents was never able to deal with the realities of raising an autistic child and bailed out of the marriage with a comment like, “I just can’t handle this. I’m sorry.” (Sound of front door closing.) But now I wonder whether it’s often a different situation entirely – two parents who love their autistic child but are at completely opposite ends as to how to “treat” them. I say that because that is exactly what has happened to my marriage and my family.
I will be the very first to admit that our marriage had never been perfect, that it had more than its share of rocky times. But there were never any “external” factors as such, and our lives were devoted to our son, who will be 5 at the end of this year. I won’t go into all of the details of the first few years of his life; I’m sure everyone has heard of – or lived – them all: missed milestones, speech delays, socialization problems, repetitive behaviors, and so on. But we accepted it – I thought – and started the usual speech, occupational, and physical therapies, and he began attending a preschool PPCD class at the elementary school down the street where he will eventually go to Kindergarten and grade school.
About a year and a half ago, my wife mentioned she had heard of a place in Austin that could help our son. At that time, we had not heard of Wakefield et al, and were only marginally aware of the vaccine-thimerosal-autism “issues”. Our first appointment went fine it seemed, and we got a list of supplements as well as dietary guidelines to follow. I remember leaving there and heading home to Houston on a mild, pleasant winter afternoon, thinking, “Wow, now we can really get him some help and everything will be fine.”
But it went downhill from there. As I started to do more and more reading and more and more research on what they wanted to do to our son, I became increasingly concerned about the lack of proven effectiveness – and more importantly – the safety of the treatments. I tried to show my wife that this was all starting to get more than a little scary, but she blew it off, saying that these people were the only ones that really cared about helping our son.
I had allowed our son to undergo several weeks of B-12 shots, the only effect being that it made him jumpy and restless at night (he has always been a good sleeper and consistently gets 10 hours a night). I had allowed him to get several weeks of DMSA suppositories to absolutely no effect. I had allowed gallon after pound of blood, urine, and stool samples to be taken from him and sent off to the mail-order labs we all know about, the ones who send back pretty, colorful lab reports designed to show parents how much they know and how much they care about their kids. I showed her the lab reports that we did manage to get from the reputable labs that completely contradicted the other ones. She refused to allow him to get his 2nd MMR shot (although his pediatrician – an excellent, common-sense doctor – allowed us to wait a bit on that one, she did insist that when he turns 5, he will get the shot.) The DAN! protocol, the Yasko protocol, homeopathy, naturopathy, functional medicine, and so on, and so on.
I kept telling my wife that this had to stop. In the meantime, I heard things like, “You don’t want him to get any better so he can remain dependent on you the rest of your life”, and “If you don’t want to help your son, get out of my way”, and “Didn’t you hear the (DAN) doctor when he said ‘It’s clear the metals are there’?”, and “Do you want him to stay like this forever?” (that last one – and other similar comments – said in front of our son). No, there is no such thing as an autistic meltdown, they’re all temper tantrums and should be treated as such. Stop every single stem, it’s bad for him. No, he’s a child with autism, not an autistic child (as if it were a disease that needed to be eradicated). And then, of course, along came Jenny McCarthy to validate everything.
I somehow managed to keep the scary stuff away from him for a while (I’ve found out that at least some of these doctors are hesitant to insist on treatments if one parent is adamantly opposed to it). But then one day a new package came in the mail: DMSA suppositories, B12 shots, Valtrex, and glutathione cream. She had gone behind my back and gotten the DAN doctor to prescribe these things. I knew then the marriage was over. No matter what, I was not going to allow our son to be subjected to this insanity all over again.
So that’s where we are now: in the middle of a divorce; fighting to do what each of us thinks is best for our son; fighting over who has the right to determine his treatments and therapies. So far, I have managed to do what I set out to do: stop our son from being hurt any further. Alternative medicine treatments have been stopped – no chelation, no injections. When he is with me, there is no GFCF diet (he has always tested negative for celiac disease and reputable allergy tests show he’s not allergic to anything). He can have dairy milk, whole wheat, and all of the fruits, vegetables, and nuts that he supposedly was deathly allergic to. And he has never shown any external or internal adverse effects from any of that. I do not give him the dozen or so supplements that were a part of his life for too long – although I’m sure he gets them on other days.
I know that there are those who treat autistic children who are fully aware of the utter ineffectiveness of their treatments as well as the very serious risks associated with them. I honestly believe there is a special place in hell for them.
I also know that there are those who honestly believe that their treatments are effective and that they are doing autistic children a great service. I sometimes pity them – as I pity my wife – that they can’t admit that they are wrong in the face of overwhelming scientific evidence. But then I think about how this lack of objectiveness and concern affects the health and safety of innocent children, and my pity disappears – completely – and is replaced with anger.
They say that what matters most when raising an autistic child – above all else – is love and acceptance. While I know that both of his parents love him dearly, one of them does not have the acceptance. And that is sad – sad for our son, sad for his parents, and sad for the family.
I have lost my wife as well as family members over this; in-laws that were like members of my own family. But it is really all about our son. He is a genuinely happy, smart, and gentle child who is the most incredible gift I can possibly imagine. And I will not allow anyone to tell me – or him – that he is broken, that he needs to be fixed, that he needs to be released from his prison, or that he is soulless.
One of the most beautiful statements I’ve read in the last couple of years comes from a wonderful essay that Kerry Cohen wrote called What’s Wrong With This Picture?. She ends it with:
But if I am only able to do one thing for him as I usher him through childhood, it will be this: I will protect him from anyone who might make him feel that he is somehow not perfect.