Broken Families, Not Broken Children

29 Sep

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.

21 Responses to “Broken Families, Not Broken Children”

  1. jypsy September 29, 2008 at 11:47 #

    Proud Father,
    I’m sorry for your loss. Although I would wish for every child, autistic or not, to live happily with both their parents, I wish more fathers, and mothers, had the intelligence and guts to do what you have done. I’m so glad that my kids have the parents they do and I’m glad your son has you.
    The “autism family divorce rate” is an unsupported myth but the overall divorce rate isn’t and that puts a lot of kids in the position your son is in and a lot of dads in yours.
    All the very best to both of you.

  2. farmwifetwo September 29, 2008 at 13:52 #

    http://www.cbc.ca/health/story/2008/09/26/chelation-heart.html

    The US gov’t hasn’t just stopped chelation trials on children but on adults as well.

    Hoping everything works out.

    S.

  3. Club 166 September 29, 2008 at 14:38 #

    Proud Father,

    I hereby nominate you for “Father of the Year”.

    Although there have been times when my wife was getting close to the “I just can’t handle this. I’m sorry”, we have always been on the same page as to what our son needs. It is hard for me to imagine what it would be like to have that tension tear apart my marriage.

    I know that I would never possess the equaniminity and poise that you display thru your commentary. Although there will certainly be some tough times ahead for you and your son, I feel confidant that you will get through them just fine.

    Know that you are doing what is best for your son, and that is the highest calling that a parent can have. My thoughts and prayers are with you.

    Joe

  4. Jennifer September 29, 2008 at 15:13 #

    Proud Father,

    Thank you for writing this. I am sure it was not easy to put all this down on paper.

    I sincerely hope that your wife will come to realize that your son is not worse after he has his weekends with you, and may decide on her own that she’s made some mistakes. In the meantime, keep your precious son close and happy.

    And thank you for that link. I hadn’t read that before and appreciated it very much.

    Jennifer

  5. Steve D September 29, 2008 at 15:53 #

    Proud Father –
    My wife and I once flirted with alt-med as well. I can relate to your process of discovery and the ensuing realization of the inherent “wrongness” of that approach – on a number of levels.
    I admire your courage for taking the stand that you have. My marriage was not “tested” in the way that yours was, thankfully. Had it been, I can only hope that I would have had the same fortitude that you have shown.
    I’m happy that your wife is demonstrating love for your son (this is not always the case) and hope that as time goes on she can move towards acceptance. I suspect that the number of parents of older autistic children who consider themselves to be ex-biomed experimenters greatly outnumbers those who adhere to the program.
    Thanks for sharing your story, Proud Father.

  6. JKW September 29, 2008 at 16:14 #

    Love and acceptance are powerful forces and acceptance doesn’t mean loss or surrender.

    I hope your wife comes to terms with these forces and decides to embrace the power and beauty of acceptance.

  7. Sullivan September 29, 2008 at 20:30 #

    Hi Proud Father–

    sorry to hear about the grief. It’s tough enough parenting any kid without adding vastly divergent philosophies.

    It sounds like you’ve definitely earned the title, “proud father”. It comes through loud and clear.

  8. Kassiane September 29, 2008 at 22:26 #

    Proud Father,

    As a grown up autistic kid, I cry for you. And I cry tears for your son…both tears of sadness that his mom can’t see the loveliness in front of her, and tears of joy that you can. In that, he is a lucky kid.

    Thank you for sharing your story. It needed to be said.

  9. AndreaS September 30, 2008 at 00:01 #

    Proud Father,

    I’m so sorry for your pain, and I hope that your wife will one day see reason. I also looked at all kinds of alternative ‘treatments’ but ultimately, I was unwilling to cause my son pain over something that was unproven to make his life easier. Best wishes for a resolution that leaves each of you will the least scarring possible.

  10. Ms. Clark September 30, 2008 at 01:13 #

    Kev is away from his computer for a little bit. I moderated pumma’s insulting, below-the-belt comment. Kev might reinstate the comment when he comes back, but for now, no more vicious or insulting comments, from anyone.

    Period.

  11. A Proud Father September 30, 2008 at 03:44 #

    Thanks to all of you for your kind comments. One thing I did not want to do was come across as whiny or full of self-pity and I hope I didn’t do that. There are children, parents, and families far worse off than we are. But it WAS tough to write, tougher than I thought it would be, but it felt good to do it.

    I did what I did knowing full well what the consequences would be, no matter how it all turns out: that I would not be seeing my son as often as I wanted to or was used to. But he will be safer.

    It is, of course, entirely up to Kev and Ms. Clark whether to allow certain comments on this. But I will tell you I have developed a VERY thick skin about this sort of thing.

    One thing I did not do in the piece was thank a bunch of you folks, including Kev, Ms. Clark (forgive me, but at one point long ago, I couldn’t believe you could care so little about autistic children ;-)), Kristina, Mike Stanton, and so on.

    I’ve been lurking a long time and it was you guys who helped pull me out of the nuthouse before it was too late.

    Thanks and don’t stop doing what you’re doing.

  12. Ms. Clark September 30, 2008 at 04:36 #

    🙂 A Proud Father, I’m glad you have thick skin. I’m even more glad that you decided that we really do care about children. A lot. I feel really upset today because of Jenny McCarthy being on tv and promoting things that will hurt so many children. So I may be more sensitive than usual. Kev may allow the mean comment through when he comes back to his computer. He is loathe to bar cranky comments, in general.

    One thing about below-the-belt, mean comments is that they expose a lot about the kind of people who make them, and what it exposes about them is that these people are not too bright and mean, besides.

  13. qchan63 September 30, 2008 at 07:08 #

    Thank you so much for this. It’s so easy to become cynical and believe there’s almost nobody out there (save the wonderful people who frequent this and like-minded sites) who comprehends what should be so blazingly obvious about things like respect, acceptance and simple humanity.

    Your relationship with your son is an eternal rebuke to the likes of SafeMinds’ Heidi Roger and her recent, shameful statement that “Death may be better than autism in some cases.” (I’m still waiting for that group’s chief, Mark Blaxill, to breathe even a word of concern about her outrageous assertion. He’s obviously too occupied with droning on fatuously about his recent talk on Capitol Hill.)

    I hope with all my heart you are able to find some peace in the midst of that difficult situation, and that your son’s mother might someday see the light.

  14. Kev September 30, 2008 at 07:41 #

    I deleted the comment as it added nothing to the conversation.

  15. Prometheus October 1, 2008 at 01:11 #

    Proud Father,

    One of the hardest things a human being can do is to say, “I was wrong.” You had enough inner strength to do that – to admit to yourself (and others) that your foray into “alternative” medicine was a mistake – and I admire your willingness to share that with us.

    It is possible that your wife will eventually admit – at least to herself – that she was wrong to subject your son to unproven and potentially dangerous treatments. She may never be able to admit that to anyone else.

    You’ve shown a great deal of courage and I wish you and your son all the best. Good on you for standing by your son in his efforts to be the best person he can be.

    Prometheus

  16. isles October 1, 2008 at 05:53 #

    Your son is extremely lucky that you had the smarts and the bravery to realize what you had to do, and then do it. As hard as it must be to go from being part of an intact family to a single guy with part-time custody, you should take satisfaction in knowing you’ve protected your son. He will grow up knowing that at least one parent appreciates him for who he is.

    I hope your ex sees sense eventually, but I’ve heard many strong, successful people say that all it took for them to have confidence in themselves while growing up was to have one dependable, encouraging person in their lives. You are that person for your son.

  17. Liz D. October 1, 2008 at 20:23 #

    Dear Proud Father,

    I’ve been thinking about you, your son, and your son’s mother since this post went up.

    My stepsons and daughter are neurotypical. However, ten years ago my daughter’s father decided that he wanted a different kind of life than we were living, and divorced me to pursue that life.

    Divorce is incredibly painful, whether or not you initiate it or not. So you have my educated sympathy.

    Co-parenting following a divorce is also difficult. It took our family some errors and false starts, by my daughter’s father and I eventually cobbled together a good-enough relationship to meet our children’s needs.

    I hope your son’s mother is mature enough, large-hearted enough, to do a good job of co-parenting with you, both inside and outside of the issues of the appropriate way to address your son’s autism.

    Please feel free to email me if you would like to hear what worked and didn’t work for us in over 20 years of joint custody.

  18. mayfly October 2, 2008 at 15:45 #

    Concern for the future of a child is not wrong. What’s wrong are the people who take advantage of the concern by o offering ineffective treatments. Treatments which they often believe through anecdotes, not study.

    My daughter is loved as she is, but if true breakthrough was found, I would owe it to her to provide it. But right now love, praise, ABA, and other educational techniques is what we are going with.

    If the breakthrough comes through the interventions will change, but not the love nor the praise.

    I’m saddened by your situation. I’m very proud of my daughter as well. We were lucky that the severity of her condition brought my wife and I closer. We both realize our daughter’s life would be better without her autism, and would love to see it gone. However that does not mean she is not loved exactly as she is. I’d love for my child to be cured for her sake, but I don’t believe she has to be. It would not make one iota of difference in how much she is loved,

    Love is not pursuing worthless cures and interventions especially those which involve risk. Love is doing all one can to give our children the fullest life possible,

  19. A Proud Father October 4, 2008 at 02:42 #

    @mayfly: That’s the way I feel. For my son’s sake, I would love for him not to be burdened with the extra effort required to communicate in this world because it can be frustrating. On the other hand, he is handling it well, and I’ve never seen anyone – adult or child – get LESS frustrated at the difficulties he faces with communication. I think that kind of thing helps build a child’s self-esteem and character. How many children, or adults for that matter, are lucky enough to be given that gift in life ?

    @Everyone else: Thank you all again for your comments. I’ve never thought I was alone going through this, but it makes big difference seeing it in “black-and-white”. Thanks again.

  20. Gastrointestinal Problems February 7, 2011 at 02:30 #

    ;,” that seems to be a great topic, i really love it `,,

  21. sharon February 7, 2011 at 02:59 #

    Thanks GP for bringing this thread back up. My son was born in 2008 so we were some way off geting our dx when this lovely article was written. I would really like to know how Proud Father and his son are going these days.

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