Sometimes He Does
I ran across a tough story recently. Veronica Galbraith, a single mother of a teenaged boy with Autism in the UK committed suicide after she was compelled to put her son into care when she found herself unable to cope with his behavioral issues. There have been a lot of news reports of parents who hurt, abandon or even kill their kids with disabilities, and the tendency of the media to express a lot of sympathy for the parents, often at the expense of the murdered offspring, has caused a lot of well-justified anxiety among the disability community.
But the story of Veronica Galbraith feels a little different, and it gives us the opportunity to examine the lives of parents of kids with disabilities with a renewed sense of purpose. Galbraith seemed to have had other issues, to be sure, with the death of her brother and some other serious family issues as well. And she appears to have had some pretty serious mental and emotional (and possibly alcohol-related) problems, too. So once again, saying she was overwhelmed with her caregiving responsibilities probably presents an oversimplification. The report seems to suggest that while her son’s behavioral challenges were more than she could handle, it was likely the loss of him in her home and her inability to help him that brought her to the point of suicide. And as almost always is the case, a lack of a solid support environment almost certainly exacted a terrible toll on her.
The thing is, however, that these external stressors aren’t mitigating circumstances. They aren’t beside the point. They ARE the point. I follow a great many special needs parents online, mostly on Twitter, and the stories I read every day paint pictures of families for whom disability often only complicates, albeit significantly so, a litany of issues ranging from irritating to tragic. We don’t spend every minute of every day dealing with disability challenges, but because those challenges are omnipresent, we are always special needs parents, regardless of whether the monster is driving at that particular moment or not.
In our desire to present real life situations as parables, there is a very real danger of creating narratives that are ultimately inaccurate. Parents do not care for our kids in a purely good or evil way, and we don’t approach those kids with a monolithic philosophy. The truth almost always lies in a grey area, in a place where parents care much more than they are given credit for, but screw up more frequently and dramatically than anyone really sees. I believe that the majority of special needs parents don’t dehumanize their kids. But most of us prove all too human ourselves.
I love my daughter, and I think about her constantly. I spend a lot of time with my stomach twisted in anxiety, but I spend a pretty large amount of time exalting over her victories both large and small. When things are going well, I feel the latter more than the former. Things often don’t go that well, but I get it right enough to sleep at night and wake up the next day ready to try to do better. Through a fog of selfish choices and uninformed choices and outright terrible choices, I occasionally get it right. Those moments of success come at just the right intervals to keep going, like lily pads for a leaping frog.
When I read the story of someone like Veronica Galbraith, I don’t wonder if she got it wrong more than she got it right, but rather if she BELIEVED she got it wrong too much. And I realize, and remind myself when necessary, that the secret to successful parenting isn’t just about educating yourself, or listening closely to what your kids are trying to tell you, or fighting the good fight like a steely-eyed warrior. Those are vital points, to be sure. But none of that happens if you lose heart, or if you convince yourself that you really can’t show up for work the next morning.
There’s a saying that every special needs parent has heard at some point, rivaling the Holland Thing for frequency of appearance in our inbox. “God never gives you more than you can handle.” But we know better. Sometimes he does.
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Another member’s (Shannon Dingle) view on the God and What You Can Handle concept.
Julia’s view on What God Gives Us…
Be sure to visit Build-A-Bear Workshop’s blog…where site co-founder blogs about her daughter’s journey with special needs as well as a traveling bear’s story of visits around the world.
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About The Author
Rob
Robert Rummel-Hudson is the author of "Schuyler’s Monster: A Father’s Journey with His Wordless Daughter", which tells the story of raising a little girl with a disability and learning to become the father she needs. It was published in February 2008 by St. Martin’s Press.
Being overwhelmed tints every decision made by a parent. The belief that you are doing it wrong by the world’s standards really is the issue here. Heart breaking.
Those sitting on the other side of the glass like to cast stones because they don’t have to deal with the realities of having a disabled child. Those that grew up disabled like to blame those that cared for them more often than I agree with… if they hadn’t pushed you, you wouldn’t be sitting there telling me how horrible a parent I am, yet not being part of my world. If they hadn’t fought for funding, for services, for a proper education for you… you would be sitting on the other side of that computer telling me how if it was you (and it isn’t) are doing it wrong.
Raising disabled children is not easy. Choices have to be made for a variety of reasons… not just financial but also whether or not you finally have to say “I can’t do this anymore”. We’re watching tv this winter… why??? b/c I’m tired and the eldest is having difficulty with puberty. The meds are helping and the filters are returning slowly, but I’ve decided he needs time to just “hang out” at home. We’ve been running for 10yrs…. and we’re tired. I’m going to get really tired of “Wipeout” before too much longer though 🙂
The saying goes “If Mama isn’t happy, nobody is happy”… goes for both parents IMO. Truth is, parents need to be supported as much or more than the child. Parents can do amazing things with support for their needs not just for those of their children. It doesn’t even have to be services…. just recognition that autism is a disability, not a way of being…. would be enough for most of us.
When a parent finally “self-destructs”, instead of casting stones maybe the disabled and the other parents should offer sympathy. Maybe they should take it as a learning opportunity of where they went wrong with their “stones” instead of “support”. Maybe then other parents will feel less isolated, and more empowered, and therefore, more in control of their lives and those of their children.
Making something positive out of something horrible.
Wow, you are so right! The fact that no one really cared enough to help me in school, and instead just punished me for having problems has definitely impacted my ability to have internet access.
Autism isn’t a way of being? Seriously? Fuck you.
I think it *is* the other factors here – this is about lack of support for someone with mental health issues, not just the special needs angle. it could have been another triggger tho clearly this was one factor which contribued, there is no denying that.
back in 2006 the father of my child was clnically depressed, said our son was “better off dead” said he himself was “better off dead”. my suggestions to him to get help/therapy etc fell on deaf ears..there were times i got through only by planning his funeral as he kept saying “i should just kill myself” so many times… we lived together. we had the same level of support for son. the difference was that the dad had extra mental health issues.
there was an incident in UK in 2006 – a lady killed herself and her autistic son due to “lack of support” acc to the media…. we discussed this on an online support group – at the time i wrote this
“i know a family with a nine year old boy with autism and severe learning difficulties, no speech, just about toilet trained. 10 hours per week social services support with carer paid thru direct payments – a life saver after battles and years waiting for link services which didnt happen.
the mother gets on with it, after all life is sometimes sh&t.
this is a challenge that has to be faced -this is her child at the end of the day.
she seeks support from other parents of children with special needs, internet etc. she finds moments of enjoyment in life – a beautiful sunset, sharing times with likeminded people…
the father is depressed, clinically. he talks about suicide, how he wishes his child had never been born, how he cannot cope being with him in public, “better off dead”.
at meetings with other special needs families he sees the children who CAN talk and who are socially aware and participate and says “why me/why him”? even a meeting with other children with autism leads to comparisons and “if only our child was like…..”
the father talks about how he cannot cope with his child, with life, and how he does not wish to be a burden on his family any more.
same family, same level of support available. same child.
should the unthinkable happen – yes it WILL be because the father is clinically depressed. ”
this was me – – things didnt improve…father of my son refused anti depressants, sought alternative therapies which didnt addess the issues; had some CBT but it seemed to exacerbate the problems – which yes in his mind did centre around “having a disabled child”. in 2007 father of my son had severe “breakdown” for want of a better word in which he attacked our son for “being disabled”…he self harmed and in one scray moement balanced himself on the edge of our fire escape threatening to jump off… he finally sought help/I refused to have him in the house, forcing the issue…
now in 2012 he has good relationship with son and has with help gotten to grips with some of his issues. he will now say he is proud of his son, who still has no speech (tho uses communication software to type simple sentences) and severe learning difficutlies…… tho contact is somewhat limited so he doesnt have to deal with the day to day stuff really – as we separated in 2007 and my ex has had further episodes of severe depression and anxiety in which things have been close to a bad outcome.
the extreme cases of suicide (and infanticide) ARE about the underlying mental health issues of the parent. yes it is about the help and support around special needs but not just that.
if you have two parents living together with same level of support and one wants to kill themselves over the disabled child. [or even get rid of the disbaled child] …and the other (me) does not…..then clearly this anecdotally demonstrates that the issue lies with the parent seeking help and support for their own demons.
it is very very difficult because until or unless the parent seeks help they wont get it – they are an adult after all – until the point where they are a danger to themselves or others. and then it may be too late…
Thanks, Rob.
I tend to amend that to “God may not give you more than you can handle, but sometimes She doesn’t give you one straw less, either.”
But you make an excellent point. Sometimes people do get too much.
I dislike the expression intently. However, my aunt who was severely challenged in her life, credits that philosophy for getting her through her many hardships. According to her, her staunch belief in God and that statement was all that kept her going. And she was one formidable goer.
That you were not given more than you could handle does not mean that you end up handling it or handled i twell. What you can and could do is often not what you end up doing for a number of reasons. You can just “screw up” . That you could have done it differently is no solace if you did not. But that is what those who do believe in this “God does not give you more than you can handle” adage believe. That whatever happens, one can handle it, no matter how terrible it is. ANd there are people who have. But there are people who have not. To quibble whether those who have not, could have is really a moot point when they did not, IMO.
Where disability falls in all of this, I don’t know either. It is another issue, often a hardship that has to be dealt with, but parents who do not have that issue, commit suicide too. Maybe less often. Clearly those who kill their kids do so more when the kids have issues that put them in a disability category and the more problems that disability causes the parent, the more likely that murder occurs. But the other way around.. I don’t know the stats.
So true! Have you ever read the “welcome to Somalia” bit…I laughed so hard I nearly peed my pants…while waiting in the pharmacy. Of course, our life is wrapped in paradox…descriptions of the never ending battles being a source of laughter. I found a link here: http://www.karensscrapsandgraphics.com/poetry/somalia.htm
I’ve always thought that people say this as a way of protecting themselves from a similar fate. I get a lot of “I could NEVER handle what you do” to which I occasionally remind them that they wouldn’t have much of a choice. If G*d doesn’t give us more than we can handle the flip side is that if we can’t handle it He won’t give it to us. But then maybe I’m just cynical.
Thanks, Rob. Couldn’t agree more. Assuming there is a god who actually keeps track of what anyone can or can’t handle is a fairly puzzling idea to me. When people say this sort of thing it’s just another way of blowing off the challenges that people with disabilities and their families face (“you’ll get by” “you’ll figure it out”).
And when people say “I’ll pray for you” or “you’re in our prayers,” I want to say, yes, but could you just get over here and do some babysitting, or run some errands, or come with to an IEP mtg, or otherwise do something that provides actually existing help on this material plane where we all live (irrespective of whether there is some other plan of existence). Serve up some help and hold the platitudes has become my response. Of course, no one who’s thinking their prayers are a help wants to hear any of this.
I have looked through your blog and twitter accounts. I have a profoundly disabled child of my own and found you interesting. However, the fact that you have bullied other special needs parents makes me sick. The fact that you called out a parent because they bought their child a device that you deem to be unworthy “I hope you saved your reciepts” is a form of bullying. You seriously should know better. I mean come on, seriously? You are having a superiority complex over what communication device you think is the best. Really? Come on. Grow up a bit. And yes, I said some nasty things to you on your blog. You are a jerk to other parents. You are cruel and mean. You need to stop this behavior. No one cares what wheelchair is best. No one cares about the best communication device. As long as our kids are happy and grow up to have happy lives, nothing else is really important. You are the one who is hung up on stupid shit. And while I am not the one who called you an asshole on twitter, I sort of wish I was because you are behaving like an asshole right now.
Hope it’s OK to mention here that over at http://thesoundofthesilent.blogspot.com, there’s a mother who blogs as someone raising a severely disabled child. I thought you might find the issues she raises there interesting.