Saturday, January 21, 2012

Would you change your child if you could?

This is my blog response to a question posed by  Autism Daddy's  post   http://autism-daddy.blogspot.com/2012/01/to-parents-that-say-i-wouldnt-change-my.html  .  As usual, I am not really black and white standing on one side or another.  I'm likely to be in agreement with some of you  on some areas of this post, and not on others.  I'd also like to add, that this is more of a response to the global autism community where this question is often posed and hotly debated, rather than to Autism Daddy personally.  I don't really follow his blog, or know or conversate with him, so I really have no opinion of him one way or another, or his views.  I just thought that since his blog was the one that brought my attention to this issue today that I ought to refer to it as where I'm starting from, but I'm not necessarily going to address those posts of his point by point.  I don't think that there is 'right' or 'wrong' in this situation.  That is one thing I want to make clear from the get go and I will not respond to vitriol based comments that are left after this post as if there is only one way to view this very complicated issue.  If only life were that simple.

So, would I change my autistic children for the world? How about myself? What would this mean exactly when people say this?  I'll be the first to admit I have lots of trouble seeing hyperboles and general concepts.  Oops, there goes my autism.  I can't imagine something that just isn't and never will be.  There can't be any change in my or my son's autism status.  There is no cure, or way to be changed, so for me to think about it, well... I just draw a blank.   It's illogical, and impossible.

However, what do I think about erasing/easing the struggles my autistic children face everyday?  That, as I think any parent would answer, would be a resounding Yes!  Yes, I would love to ease my ASD kid's struggles, and My NT child's as well.  Afterall, that's the whole notion behind the idea of 'changing our child' isn't it?  For most of us, it isn't about the shallow concept of not getting what we anticipated.  Although, I will say that that is part of it for some parents of special needs kids.  Most of us, it is all about wanting our kids to be happy, and healthy and have the overall ability to pursue what they want in life without big monstrous obstacles in their way.  For many, it's the ability to not have to live in a house that's a fortress, always on lockdown, alarms set, for the next elopement.  Or, it's about not scrubbing poop off the walls and a oblivious child at 3 AM.  Or, maybe it's about not having to worry about your 6 foot adult child becoming suddenly violent in a fit of sensory overwhelm and living with the fear that maybe you might be seriously hurt next time.  Maybe, it's about not wanting to see your daughter sit alone at lunch knowing she wants desperately to join in with the group of girls at the next table, but doesn't have a clue as to how to go about it.  Maybe, it's about not worrying over who will care for your autistic child when you are gone, and if they'll be taken care of at all.  Those are all very common worries when dealing with an autistic loved one.

I want to be clear that I understand those concerns and I have those, too, in my own life with the broad spectrum of autism that is in our household.  I also understand that there are some people that are better suited for being special needs parents.  Not because some people are better than others as people, but because we all have different things we are good at and things that seem like a big deal to one person may not be as much to another.  This isn't about character as much as it's about personality.  Some parents of ASD kids need extra support.  I wonder what poeple's opinions would be of how autism effects their lives if the support they needed was there?  What if, there were ways that eased some of the issues autism poses?  What would people's opinion on it be then?

I wonder this, because I wonder if it's possible that in the future, we can have these resources readily available.  What if, when a person was diagnosed there were the supports in place to help with the struggles that they have everyday?  A team of people specializing in what your child might need.  Occupational therapists, and Speech paths, as well as physical therapists.  What if there were optimal schooling available, instead of this half assed educational system we have now that doesn't really accommodate anyone?  There could be ideas on how to integrate the sensory system for better sleep, less pooptastrophes, less violent overwhelm.  There could be a communication system, even if it isn't verbal.  There could be social skill training and better acceptance out in the community for autistics.  Respite that was available not just to the wealthy.

I am appalled that as of now, most usually there are none of those things offered, not explained to parents when their child is diagnosed with autism.  Usually, there is meds offered for 'behaviors' but nothing in the way of how to help the person with autism, or the family live a functional life.  Some people research and figure it out for themselves if they have the ability to do so.  Others, have the resources to buy the help they need.  I am appalled that there are few educational supports that are reliable for children in a country like ours.  There is no reason that parents should be as afraid as I know most of you out there reading this are, to send our kids to school everyday.  This isn't the fault of autism.  This is about stepping up and taking care of each other as humans.  Disability will always be a part of society and what it means to be a part of the human race.  There is no changing it.  We must learn to advocate and have compassion for others that are different from us.  I don't want other's pity.  Pity helps no one.  I want understanding.  I want equality, not tolerance.  I don't want my boys 'tolerated'.  No.  I want them valued. I think that in the future with enough advocacy we can possibly achieve this goal.  Maybe, with some of the deficits addressed with autism there might be more room to see the potential.

16 comments:

  1. Dead on.
    I would make it easier for my boys if I could, but thats not my place as a parent. That's not in my power and not really worth the arguement.
    Hummanity is not very forgiving of difference. I sometimes think that our own lack of understanding about that (theory of mind, on micro and macro levels)is the biggest barriers.
    It suprises me how many people see the world in black and white. It doesn't seem conducive to understanding much at all.

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    1. I agree that seeing things in black and white isn't conducive to learning or growing. I have issues with that at times, but due to my overwhelming curiosity of wondering 'why' about everything I need to explore all angles of a situation. Thanks for your comment!

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  2. Thank you so much for writing this. I've actually used your line about not wanting to be "tolerated" but valued before. Of course, I'm not a parent (and don't plan on becoming one), but absolutely I agree with the sentiment - if I can interact with the rest of the world easier, and just have more understanding from those around me, things would be so much better.

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    1. Thanks for stopping by an leaving feedback. I always feel a little relief when others on the spectrum agree with what I say. I'm often afraid that my opinion is in the minority of the autistic community and that I'm leading parents astray with it, but I can only write what I know.

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  3. I read Autism Daddy's post yesterday and I think there is a group that feels that way. I wrote a post about how we all have different journeys and need to cheer each other on. It aggravates me when people make comments about how autism sucks or they want it gone. (i think post was cheer each other on) However I don't comment often on their posts because they aren't ready to see the other side. However I appreciated that you commented because I think you did it in such a way (like this post) saying how it could be said better. And this is an excellent post. It is not that I want to change my son but yes I am helping him work on not having meltdowns or how to cope with any number of things. And I completely agree with you that peoples opinions may change if they had the full resources and not the half assed education system, although I think it isn't even half-assed, maybe quarter-assed!! (this is aspieside but blogger won't let me comment as that but let me comment as my blogger name)

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    1. I think that you may have hit on the difference that some would say is 'changing' which is what we would consider 'helping' or even 'teaching' our kids. No different to me than teaching other kids at school, or good social skills (manners, ect). We aren't changing them, but helping them to grow as individuals.

      For reference for others, the post being referred to is an exclellent read: http://aspieside.com/2011/11/15/cheer-each-other-on-try-to-enjoy-the-scenery/

      Oh, and our ed. system is quarter assed at best. I agree! lol

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  4. Wonderfully written and great perspective as usual.

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    1. Thanks! I appreciate you reading and commenting!

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  5. You rock! Well thought out and so true. As a parent I am so often at a loss for what to do to make things better. Thank God I have the time to help fight for my kids at school, but some things that seem so simple that would help them, I'm met with ridiculous answers from the special education staff. We do need more resources! Amen to that! It appalling...but then again so are so many things in this country.

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    1. I appreciate how you worded that, about having the time to help your kids. That's something that I have been realizing lately (and I touched on in the post)some of us have more time, or ability, ect... to tend to what our kids need. There are some parents that just feel defeated due to lack of whatever resources (even parenting skills) that's needed. The children shouldn't suffer due to this. Extra support should be available for these parents. Thanks for commenting and sharing my posts!

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  6. well said.
    in canada, we have most of the resources you have mentioned.
    and the differences it has made for my autistic son, are remarkable.
    but the element that cannot be resourced, nor legislated, just dreamed of,
    the attitude of the rest of the people around, has changed since i was a child in the sixties and seventies. times when i expected children to be cruel, and they were kind to my son. times when i expected to see teasing and taunting, i saw instead fellowship and support.
    it is true i can still see the odd person standing in line at the checkout watching sammy and me, with that look [you know the look, the one i really want to go over and wipe off their face with a kleenex and spit] that look that says they are looking at "otherness". something so different from themselves that they can't quite understand what they are seeing.
    i should let it go. it does no good to feel angry about it.
    sammy doesn't act bothered about it.
    i won't say he doesn't notice, because he notices everything, no matter how small or fleeting.
    but i don't think he recognizes the look as anything,
    after all people walk around all the time with ugly looks on their face.
    it's just another one, eh?
    if you can get the resources, things do get better.
    hang in there.

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    1. That's great that Canada has those resources available. I'll bet it makes a ton of difference! Canada seems to be more with it in so many ways than the US.

      I guess the attitude you speak of, is one that I feel we can help with. I always feel that if others see that I am okay with my kids' autism than maybe they can be, too. I always worry that the attitude of burden from some parents isn't really helping others see value in ASD individuals. I'm not saying that means never asking for help, or talking about bad days, but just our overall attitude toward our kids differences being more geared toward positives than the deficits.

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  7. Well to me changing people on the spectrum is a continuum just like the autism spectrum. Those on the higher end of the spectrum like the way they are but the need to social relationships is so driven into people that in today's world it has become a necessity which is why a lot of people on the higher end of the spectrum have some of the mental health issues like they do for example, depression, anxiety, nervousness, mood disorders, or conduct disorders. is there life more challenging than most, that is most definitely true.

    On the other hand you have the severely autistic who without their parents or a very very caring sibling after the parents die will probably have to be institutionalized if the behaviors do not change a huge amount. Now Im not saying that this is what happens to everybody but it is the message doctors are giving to parents about severely autistic kids. Is this the most ethical thing to say to a patient's parents probably not but really do we have adequate treatment options, facilities and methods that are accepted by insurance and healthcare providers, not really. So in reality doctors are say what they believe the WCS or worse case scenario to prepare the families based on the affordable and usable treatment options available. but back to the main point should we change severely autistic people. First we must look at what change means which in this case could just include small behavioral changes all the way up to transforming everything that the child has in order to "fix" autism. Fixing isn't the best word but it is what most think when they think change. To me though I just wish we could find a way to communicate effectively with a year of diagnosis whether its through verbal or nonverbal means it doesn't matter it just needs to be concrete and clear in some form. Most wouldn't understand it but the parents would then be able to better figure out what is going on. Second work getting destructive and dangerous behaviors undercontrol but remember its impossible for even those so called "neurotypical" kids to completely eliminate danger or fully protect the person. The best thing for those with autism is to be exposed to various different environments in order to more accurately judge what the person can handle. Third, figure out how to deal with the GI issues which is one of the primary reasons people on the spectrum have poor diets, have a compromised immune system, and because all the sensory issues when it comes to eating food. Fourth start work on developing just simple social skills within the family. Yeah we Im not saying we should expect them to act like everyone else but teaching them some things about how society works would go a long way for them to be able to understand, and for observer's be able to witness.
    these four or so items are just designed to help protect the person on the spectrum and those around him but the bigger picture as most have said is that awareness of autism spectrum disorders even though it is rising in staggering proportions less and less people seem to know about it and those who do know a little bit about it but are not regularly exposed thinks that autism is like how Hollywood portrayed it in the movie rain. Yeah I love listening people asking me about whether or not I am like rain man because that just makes me laugh and then once I tell them they are shocked and a little embarrassed but beyond that its important to know that everyone should be valued.

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    1. I agree. We need to help facilitate the best therapy options to aide in growth in autistic children, so that as they age 'behaviors' as most would call them, will not be as much of an issue. So many things are changing to how they deal with disabled people now, compared to just 30 yrs ago. As I mentioned in another comment above, I don't view therapies and accommodations as 'changing' or 'fixing'. Some might consider it that way, but to me it's just teaching.
      Thanks for your comment!

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  8. I just ran across your blog within the past couple days. I agree that the US public education system doesn't do a good job accommodating students. It is a "one size fits none" system.

    Fortunately there are groups working to solve this problem, at least on the academic side. One such group is the Learning Registry, which is a partnership of the US Dept. of Education and the equivalent agency in the UK. The Learning Registry is a "transport and store" mechanism for information about learning resources (metadata) and how they are used (paradata).

    Other groups (notably inBloom (formerly known as the Shared Learning Collaborative) and the Illinois Shared Learning Environment project (a partnership between IL State board of Ed, IL Department of Commerce and Economic Opportunity, Southern Illinois University, Northern Illinois University, and the National Center for Supercomputing Applications, among others)) are working to build indexes on top of the Learning Registry to make it easier for teachers, parents, and students to find resources to help them learn. Groups in other states (CPALMS in Florida, there's also a group in California and one in New York, unfortunately I don't remember the names of those groups) who are also working on this.

    The idea behind this is to make it easier for teachers who have a limited amount of time to be able to find resources to help students who are behind in school to catch up, or at least learn the things in the learning standards, and to help teachers keep those who are on the other end of the academic spectrum keep their students challenged.

    Regrettably I don't see much work being done on the behavior/social side to help teachers, therapists, and others to help those who need the extra help. I wish it were different, but it is not, at least from where I stand.

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    1. I think there are some resources that are slowly being put together for teachers who now have to accommodate so many different needs. My area has regular conferences, and seminars that they can attend, but many don't that really should!

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