Posts Tagged support
Written on January 20, 2012 by Stuart Duncan 
Filed Under: Autism
Whether you feel that Autism needs to be cured or not, we’ve all had that moment where we thought our newly diagnosed child was doomed to a complicated struggle of a life and that they will never amount to what others see as average, much less the lofty goals and dreams we had before the diagnosis.
There is certainly nothing wrong with this, it is natural. It is a scary thing to have happen to you and to your child.
Less than perfect
For many people, that feeling of disappointment and fear of the future passes. Maybe not entirely, but for the most part. They learn to accept that their child is how they are and that they’re perfectly wonderful just the way they are. It’s certainly not without it’s struggles but parents take each day as they are and love their child unconditionally… no matter what.
Then there are those parents who hold on to that disappointment and will always fear the future. They see their children as damaged or defective and seek vengeance (or justice) on those who are responsible. They will never accept that their child was meant to be how they are.. and who they were meant to be was robbed from them.
I don’t know who is right and I don’t know who is wrong, I don’t know if there is a villain to bring to justice… but what I do know is that no child should ever feel that their parent sees them as less than perfect… much less broken or defective.
Few exceptions
Even a child that does not speak, does not engage their parents, does not play and has all the other “severe” indications of “low functioning” autism can sometimes surprise us. The right tool, device or incentive can help some of these people “find their voice” and show the world what they’re truly made of.
It makes many people think that a lot of autistics have it within them to do this. You, and they, just have to find a way.
If true (which I believe it likely is, at least for some), then the things you say, do and even think will be picked up and even understood by your child. Even more so if your child is able to express themselves and communicate better.
Even if you try to hide it, if you truly believe that your child is broken or defective, it will affect your child. Perhaps the parent is a little less affectionate, perhaps they’re a little less encouraging… these things will resonate with your child. It may be on some subconscious level or it may just be a hint of self doubt that lives within them into adulthood.
Few children are able to excel despite a parent’s disapproval, few children are able to truly be self confident when their own parents do not believe in them first. Some children can overcome that but doesn’t a child with autism have enough to overcome already?
Unconditional love
I’m not saying that you are wrong if you fight for a cure, I’m not saying you’re wrong if you are fighting to put a stop to what ever you believe is the cause of autism… what I am asking for is… please stop seeing your child as broken.
Accepting your child for who they are, right now, right in front of you… it does not mean giving up. It certainly doesn’t mean you don’t care. All it means is that you love your child, through and through, 100%, no matter what.
Know that your child is perfect, know that your child is who they are and encourage them to always be themselves. Know it.
Don’t just think it and don’t just make it something you say so that you can feel better about yourself for making them feel better about themself… you need to believe it. You need to know it.
This is your child and your child deserves that much from you.
Once you believe it, the real miracles start to happen.
Written on September 26, 2011 by Stuart Duncan
Filed Under: Autism
I’m sure you’re aware by now of the dialogue going on over at The Thinking Person’s Guide to Autism, and if not… it’s probably a good time to give it a once over. Keep in mind that there are some very long posts and, depending on when you read this, more coming soon… make sure you set aside some time before popping over.
I’ve been biting my tongue through this “dialogue” for a variety of reasons. If you don’t want to go into it with any preconceived notions from yours truly, go there now before reading my post.
How this all started
Let’s just be clear on where this all originated. The “non-disabled parent” wrote a post (that you can read here) about an imaginary parent going to a movie that made rude remarks about Down Syndrome and used the R word and so forth… he imagined how that parent would feel if that parent had a child with Down Syndrome and had to hear this in the movie and all the rest of the audience laughing at it.
In response, the “disabled adult” (autistic) took great offense (you can read it here) to this in that he can’t possibly know what it’s like to be disabled and has no right to be so offended.
Obviously this is a very short summary and I’m paraphrasing, so please feel free to read those two posts to understand exactly what transpired.
But to reiterate… there is now a “discussion” about what parents can and can’t understand, can and can’t discuss and who the real “advocates” are… based on a parent writing about how another (imaginary) parent might have felt.
He didn’t imagine himself being a child with Down Syndrome… he wrote about how a fellow parent might feel.
Apple, meet orange… begin discussion about steak.
Where does this discussion lead?
Hopefully to a good place, hopefully some really good mutual understanding and maybe… if we’re really lucky, even teamwork toward the future will come of this.
However, there’s always different people who find different meanings from all things and therefore, there may also be some much more… well, I would call them “less positive” possible outcomes.
As one person linked to the discussions, I replied to their link saying that I’m biting my tongue.
A woman replied to me, this is what she wrote:
Me: Autistic parent of an autistic child
I’ll comment on this tomorrow
Person without a disability
Why can’t you just come out and say it?
I did not reply to her, I once again bit my tongue because I did not see any possible good outcome from a discussion that begins in that tone.
Still, I really wanted to ask… Is this how we are to address each other from here on out? Is this truly what it’s coming to? Are we, two groups who are fighting the labels that people place on us, going to now refer to each other using labels?
What’s better is… this woman has no idea if I have Autism or not. This was a completely presumptuous reply based on my “biting my tongue” comment.
Is this truly the road we’re going to go down? Is this going to be a benefit to anyone?
Communities?
Adding to the further separation and division, adding to the need to be labeling people in the effort to come together and abolish labels… we now have the Autism Community, Autistic Community, Disability Community and Non-Disability Community… and those who feel that some people belong in multiple communities while others don’t belong in any communities at all.
What does this all mean?
As a group, we’re asking society for acceptance of those that are different… yet we can’t even accept the differences in each other.
We fumble over ourselves declaring superiority, inferiority, privilege, rights, responsiblities and more… in an effort to separate and divide ourselves, to judge one another, label each other and “feel about” each other… all the while telling outside observers to simply accept the differences within us all: gender, race, income, special needs, etc.
You might as well get money management advice from a random homeless person.
Steak
The meat of the discussion, which everyone is discussing but few can seem to agree on, is that we need to listen to each other, talk to each other and work together.
There’s an old saying… “Believe in yourself and others will believe in you too“. In this case, we have to accept each other so that others will accept us as well.
And by us, I don’t mean “non-disabled parents”, I don’t mean “disabled adults”… I mean us. All of us. Advocates. People. Human beings.
Telling each other to shut up or to speak up or what to say or what not say is not the best message to send to the world, it’s not the lesson we wish of others to learn, it’s not the example we need to set.
We all have a vision of how best to educate the world, we all have a vision of how everything would work the best… we all have our own visions. That’s part of what makes us all unique. Those visions all come from having a different life, different experience, different education, different soul…
So long as our visions create conflict, none of them will ever come to life. And it won’t be society’s fault. It will be our own.
Apples and Oranges are different, but they’re both good for the world. They both grow, reproduce, respond well to proper caring and nurturing… and at the end of the day, they’re both fruits.
In fact, maybe they’re not so different after all.
I really hope for the best in these discussions so that we can accept each others differences, rejoice in our commonalities and find a way to work together in educating others how to do the same.
Written on September 13, 2011 by Stuart Duncan
Filed Under: Autism
There’s a lot of talk around the Autism community lately over emotions.. such as whether or not there should be a grieving period.. or whether or not we should be feeling any guilt.
“Should be”…. such a funny concept in a world of differences.
In my experience
I can only tell you about how it went for me… what I felt and didn’t feel. Because the truth is that everyone is different.
I have a pretty typical story in that I had heard of Autism but didn’t know much beyond that until I started to look for answers as to why my son acted the way he did. A lot of repetition, lining things up, aversion to a lot of foods and so on and so forth, had me reading website after website to see what it might be.
I recognized these signs rather early on and was quick to research all that I could… and despite a lot of conflicting stories, I can honestly say that I never once felt guilty about it. I never once thought that there was something that my wife or I did wrong or that there was something that may have caused my son’s Autism.
It wasn’t a foreign concept to me though, as family member after family member and friend after friend asked if we knew what had caused it, or if we were afraid that we had done something to cause it.
As for grieving… I think it’s funny how people have different interpretations as to what grieving is. Most people think that it means breaking down into a crying fit and feeling complete remorse and being depressed for a while, etc, etc.
For me, I think of grieving as simply being worried about the future, about missing the things that you can’t do with your child, or things you won’t be able to do… thinking about potential bullies, potential other issues that may come around (seizures, allergies, diets, etc).
No, I’ve never broken down crying and no, I have no problem what so ever with who my child is or who he will become.. but a small part of me does grieve from time to time. I still want more for him… more that Autism will make very improbable (not impossible).
“Should Be” does not mean right or wrong
What I try to tell people is that there is no right or wrong way to feel. Granted, I do feel that feeling guilty serves no purpose and benefits no one… but it’s not wrong to feel guilty. If anything, the only thing I could imagine as being wrong is if you felt nothing.. if there was no mixed bag of emotions. Because hearing that your child has Autism is a bit of a big deal. It can change the course of the rest of your life.
There is just so much emotional baggage that comes along with an Autism diagnosis that we can’t possibly all feel the exact same things at the exact same time. Some of us might not feel guilty, some of us might not grieve. Some of us, sadly, won’t ever be able to accept it.
It’s not right or wrong, it’s just different.
Fear of the unknown
For most of us, Autism is a very big unknown that can take all those plans for the future that you had and make your future into an unknown as well.
Unknowns are scary. We fear them. We try to justify them, give meaning to them, master them… we try to find the cause of it.
Eventually, hopefully.. we come to accept them. Not just Autism, but unknowns in general. There are just some things we can’t control, that throw our lives off course and we can either feel guilty about it, grieve over it or… accept it.
If you read posts by people that are grieving, don’t judge them because you didn’t grieve. If you read posts by people that feel guilty, as if they are certain that they did something wrong. Reassure them but don’t judge them. They don’t really need to feel like they’re doing something wrong by feeling like they’re doing something wrong.. ya know?
Everyone is different and as much as we’d like for everyone to hate the people we hate, to fear what we fear, to accept what we accept and so on and so on.. it’s just not going to happen.
We all deal with life differently. It may seem that some people deal better than others, but the truth is that we just deal with it differently.
Written on September 8, 2011 by Stuart Duncan
Filed Under: Autism
The phrase “own little world” is often used to indicate ignorance, that a person has no idea what is going on in the world outside of their own life.
I like to think of it more as an indicator as to what is important. You see, what ever is happening in my own little world has the utmost importance to me. It’s what I know best, it’s what I care for most and it’s what is most important to me.
There’s nothing wrong with your own little world, everyone has one and everyone should be proud of theirs.
My own little world
For me, my own little world consists of myself, my wife, my children and my pets… that’s it. That’s what I know better than anyone else, it’s what is more important to me than anything else and it’s what brings me the most joy.
For some people, it might be only their children, only their spouse… it may be just themselves, if they are focusing on their own happiness before starting or without having a family.
You protect your own little world even if it means getting a little bloody because there’s nothing more important in the whole world.. than your own little world.
But…
Don’t forget there is a bigger world out there
I find that, especially when it comes to parenting, and 10 fold more when it comes to Autism, people easily get lost in their own little world.. and when they step out and look around, they forget that things are different out there.
I know I’m not telling you anything that you don’t already know, but we all need reminders sometimes. Hear me out for a minute…
We Autism parents write about our experiences and sometimes, when we’re lucky, we write something that you can relate to. However, the very nature of Autism, as we all know, is that the experience is different for everyone.
This presents a very interesting problem… we write about our own little world, which doesn’t match up with other people’s little worlds… there are two possible outcomes:
- One or both parties recognizes that their own little world is different, accepts that fact and either does not comment or does comment, stating how their own experience differs
- One or both parties denies the existence of the other person’s little world, proclaiming that they are liars, misguided, ignorant or just plain wrong and that they are doing a great disservice to the entire world (which I’m assuming is their reference to their own little world but we both know it isn’t)
More often than not, I see #2 all over other people’s blogs. (pun intended)
Take a deep breath
The problem with this is that it requires both parties to remember and recognize the “my own little world” phenomenon and take a deep breath, relax and accept that we all have different experiences with differing opinions.
Not just both parties, but many many parties… the more popular a blog becomes, the more that little worlds come into contact with it… some of them collide.
Just this morning I tweeted: Autism is like a rainbow; it has a brighter side & a darker side, every shade is important & beautiful and it hides something golden.
To which, one angry parent was rather mad that I’d call it a rainbow (I didn’t, it’s a comparison), proceeded to remind me that Autism is a serious disability and that “fluff” like that doesn’t help those who suffer from Autism.
He didn’t take a deep breath.
He completely skipped the “darker side” reference as well as the part that says that it “hides something golden”. I mean, yes… I’ll admit to the “fluff” but it’s not all peaches and cream either. I felt it rather adequately expressed the darker points… the “suffering.”
Anyway, as I said, he didn’t take a deep breath, instead acting instinctively to attack me for not telling his story… for not telling everyone about his own little world.
However, that’s not my place. I can’t tell other people’s stories for them.
And so…. I take a deep breath, and I remember that his own little world is what he knows and is what is more important to him. In his way, he’s protecting that.
My own little world is different. I can accept that.
And when I read about his experiences and his story… I’ll remember to respect that his own little world is vastly different than my own.
Please keep in mind that, what you experience in your own little world, might not be what someone else experiences. Their story is completely different. They share their story, not to fight with you, but to show you just how different things can be… and maybe, sometimes, just how much the same they can be too.
Take a deep breath. Your own little world is not threatened by others sharing their own story. Your own little world is still your own, you still know it better than anyone… and most of all, it doesn’t mean that anyone thinks you are ignorant of what’s going on outside of your own little world. At least, it shouldn’t.
Just take a deep breath. In fact… you should rejoice that no one else’s little world is the same as yours. If it was, it wouldn’t be your own.
Written on August 31, 2011 by Stuart Duncan
Filed Under: Autism
You would think that a question, such as “what is autism advocacy to you?”, would be pretty straight forward. However, if you ask a few thousand people that question, you’ll very quickly realize that it’s most definitely not straight forward.
Advocate
verb
1. to speak or write in favor of; support or urge by argument; recommend publicly: He advocated higher salaries for teachers.
noun
2. a person who speaks or writes in support or defense of a person, cause, etc. (usually followed by of ): an advocate of peace.
3. a person who pleads for or in behalf of another; intercessor.
4. a person who pleads the cause of another in a court of law.
I think everyone can agree that, even though there is an official definition, there is no one way to be an advocate.
Autism Advocacy
So I asked what Autism Advocacy is to people on various social networks and thought I’d share some of the responses with you:
#empowerment #support to let families affected by #Autism , #ASD , & #FragileX know ‘they are not alone’
Active support that raises awareness, results in change & aid 2 individuals & families.
For me it means donating money to autism research, doing walks for autism, striking up a conversation about it with strangers in the checkout line, at the park or wherever. Online, it means posting articles, videos, blogs etc talking about different aspects of the disorder. I think it is a combination of these things, as well as being a “voice” for those people affected by it.
Raising awareness of the breadth and scale of autism and reminding people it is a life long condition. I certainly have got into the habit of posting articles / starting conversations about issues on autism.
Autism Advocacy on a parental level is educating the awareness of the challenges you face everyday with your child who is diagnosed. Especially with your community leaders, your local government, and advocating for change to enhance and strengthen the bonds of Autism Families. Most families are not able to financially support the intervention that is provided through health insurance, Fundraising is important aspect of providing those needs to your family. Structure is vital for children with Autism.
I even got some responses such as this one:
Unfortunately, mostly very loud parents.
Which may bring you to feel upset at first but I think when you really think about it and think back to some of the other parents you may have come across in your life, this actually may be true… maybe not “mostly” but certainly some do qualify.
You can quickly see just how varied the answers are. They’re all advocates but they look at the tasks, the targets and those they’re advocating for quite differently.
Who are some good Autism Advocates?
I also asked who people felt are good autism advocates. Many people named Temple Grandin, some people mentioned people on Twitter, such as @Diaryofamom, @shannonrosa, @CorinaBecker, @AutismWomen and @LauraBShumaker.
The response from some parents where that they, themselves, were the best Autism Advocates. Why?
Well, as the parent of a child with Autism, no one could advocate for their child better than they could.
But this brings us back to the first question, what is Autism Advocacy?
In a rather amazing bit of good timing, Jim (@GingerHeadDad) wrote this just yesterday: http://gingerheaddad.wordpress.com/2011/08/30/what-is-wrong-with-just-being-a-parent/
I had written several replies in his comments but never hit submit on any of them. I felt I wasn’t expressing myself clearly, I felt I wasn’t doing his post justice. I felt… I felt that the questions that I had been asking essentially are the response to his post that I am looking for. So I decided to write up a blog post of my own in response and share that in his comments…. which brings me to this:
Autism Advocacy – As Defined By Stuart Duncan
Autism Advocacy is the speaking up about, speaking on behalf of, speaking in support of, speaking in defiance of and speaking in defense of yourself, a loved one, all people with Autism or for Autism in general whether you are speaking to yourself, one other individual, a group of individuals or the entire world.
What does that mean?
It means that it doesn’t matter how much money you’ve donated, if you’ve created laws, written books, built buildings or if you’ve informed a family member, had a teacher recognize a special situation involving your child, had an impromptu discussion with a stranger or even if you’ve simply come to self realizations all on your own…. you are an Autism Advocate.
Never feel like you aren’t doing enough simply because your advocacy efforts are focused on those you love.
That change you made in a teacher, that stranger you talked to, that family member that has a better understanding… they’ll carry that forward to the next time they encounter someone with Autism and it will affect them. You will have made a difference.
Always accept that you feel you could do more but never let yourself feel like you haven’t done enough.
We all see advocacy differently. We all see Autism differently. We all have a different view that leads us to different goals.
It’s not about the number of people that hear you. It’s not about the size of the changes you can inspire in the world.
Big or small, loud or quiet, we are all advocates.
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To the world you may be just one person, but to one person you may be the world. ~ Brandi Snyder
