I really couldn't think of a better title! I am ordering this dvd, & really excited to see it in full-length. I know this YouTube piece has been out for a while, but I just came across it. So, figured I'd share, in the event someone else missed it too.
So much of what we, the general public, see of autism is very negative. The majority of news pieces and interviews done feature parents, researchers, therapists, and doctors--very rarely autistic people. The conversation generally involves searching for a cause or a cure, controversial treatments, the financial and emotional stresses felt by families, and all too often, autistic children are portrayed as wild, out of control, and completely disconnected. Their parents cry and talk about how painful it was the day their child was diagnosed, and they speak of the daily anguish they feel, living with autism. Many times, the talk becomes even more hopeless. Some parents describe autism as having "stolen" their child's soul, that it's as if their "child was kidnapped," they compare autism to cancer, and some have even admitted contemplating killing their child.
I have no doubt that if the topic was something other than autism, the public would not stand for this type of hate speech. If the parents of diabetic children came out and said that the day their child was diagnosed with diabetes, they felt like their life was over. People would be appalled if these parents continued on, complaining about the cost over medical care for their child, how time-consuming checking blood sugars was, and how stressful it is to maintain a special diet. If they said it was as if their child had been replaced by some other child, that this just wasn't the same child they had before diabetes, people would have to pick their jaws up off the floor.
Can you imagine...
An ad campaign for juvenile rheumatoid arthritis, a father declares:
"I didn't choose this."
On this year's MD Telethon, parents shake their heads, saying:
"You just keep being disappointed."
The father of a child with cerebral palsy:
"I really hope I'm not changing his diaper by the time he's six and a half."
The next St. Jude commercial:
"I actually contemplated putting my child in the car and driving off a bridge."
The mom of a child who is in recovery from leukemia, when asked if she was going to have any more children:
"I'm done having children. I always thought I'd have at least four or five. But I got my a-- kicked."
I am pretty sure these parents would be advised to get psychiatric help. Perhaps in some cases, child protective services would be called in. There would be no excuse for any of these parents to make public statements like the ones above. Yet, the ones above were made and continue to be made by parents of autistic children. And no one says a word for. It is unforgivable. Stop the hate speech NOW.
Support & promote videos such as the one above. If you truly care about what kind of life your child will have in 5, 10, or 20 years, this campaign of shame and blame needs to end now. How do you expect anyone to offer a job, or services, or living arrangements to someone who for years has been portrayed as being inhuman, wild, disconnected, soulless? Personally, I don't want my child to have to fight the public and their cruel misconceptions her entire life.
Life with autism is not a bowl full of cherries (neither for the parent or the child). It is stressful. Days are long. Nights are often longer. There is screaming. There is crying. There are IEP's and school issues to contend with. There may be therapy and doctor appointments. Yes, life with autism can be difficult. But autistic children do have souls and they have not been kidnapped. They will not die from autism, and no one should ever announce repeatedly in public that they have considered ending their autistic child's life. Autistic individuals deserve the same respect and rights afforded to every other human being.
The most important thing I feel I've done on this leg of my journey (autism that is) was to reach out to adult autistics. Today, with online communities, autism blogs, and published books, reaching out to autistic adults is rather easy. These adults have given me valuable insight into my daughter. They tell me their own personal stories, what they have gone through, what helped them growing up. Mostly, they gave me a whole new view of autism. Their stories and advice are priceless, and have changed our family and our outlook so much. I would suggest to any other parent to connect with the adult autism community. You will feel empowered and hopeful, for sure.
As a parent, especially when your child is first diagnosed, you pick up nearly every book on the the subject and then (of course!) you Google autism. Without fail, Autism Speaks is one of the first you will come across. I remember visiting it early on and reading their material. I watched a movie they had produced, Autism Everyday. I saw lives out of control. I saw children out of control. I saw horrible tantrums, parents who were desperate. I saw so much of my life in that film. I cried as I watched it. I could relate to a lot of it. For most parents, the next step is trying to find a cause, and therefore a blame.
For me, our daughter has had health issues since birth. She never had a regression. So, for me, it's apparent our daughter's autism is genetic. I feel she was autistic in the womb. Now, whether all cases of autism are genetic, I do not know for sure. I do think it's possible some children have an immune response to vaccines (I don't think it's mercury) and I don't think it would hurt to look at how we vaccinate our children (perhaps less shots at once, maybe). I believe the children who make almost overnight progress by dietary changes, probably did not have the same type of autism that my daughter has. It is possible that these children experienced behavioral and psychological changes due to allergies and intolerances. I never needed to find something that I could point to and say "YOU did this to my child!" For me, I just don't think that would be helpful.
Trust me, I have felt sadness. I have felt bitterness. I have felt desperate. I have felt heartbroken. I have those moments. I cry. I allow myself pity parties from time to time. I will cry, I sit and talk to my husband, I speak to other parents, I journal, I blog, I listen to music. I let myself feel those emotions, I identify them, and I deal with them. And then, and most importantly, I move on. I have chosen to focus on the positive. I truly don't think those experiences and the emotions I feel are unique to me, my situation, or to autism.
Life with autism has joy. There is hope. There is laughter and smiles. There is music and dancing. I made a choice to accept my daughter--all of her. I can't even say it was a choice, it was natural, she is my child, my flesh and blood. No matter what, I would love her and always will. Autism, or any other label or diagnosis, would never, could never change that! Making peace with autism sets you free to enjoy your life and your child. I do not feel like I've been cheated, not at all. My daughter has changed me, I find such beauty in the details. The little things, in life with autism, they are so significant and endearing. My children are both unique gifts and truly the greatest of all blessings. I would not change my life for anything.
I hear from time to time, some parents compare autism to cancer. They are somehow able make many parallels between autism and cancer. This, honestly, embarrasses me. I have friends and family members who are fighting cancer, I know parents who have lost their children to cancer. Cancer kills. Cancer is an evil disease. We need to find a cure for cancer.
I can't imagine going up to one of my friends & complaining to them about my child's autism, and how it's so much like their son or daughter's fatal tumor. I'm sick to think of a conversation comparing the chemotherapy and medications their child had to take (to save their life), and of all the treatments and therapies I might have tried to "cure" my child. I wonder what my friends would think if I were to bitch about my sleepless nights, how my child just wouldn't quit stimming, and how hopeless life with autism was...when my friend is up all hours pacing the hospital room, or their child was so sick from cancer that his body could no longer handle even the smallest of movements, or how their family remained positive and never gave up until the moment their child died.
No, any such conversations would sicken me. I can't believe anyone truly buys that garbage. It blows me away that someone would ever make such a comparison. For me, I see absolutely no connection to cancer or any other life-threatening disease. There are some minor commonalities one could draw between autism (any other disorder or condition that can be stressful on parents or a family) and any disease that also causes stress. But, beyond that, the parents of an autistic child, who has typical autism (i.e. classic, really anywhere on the spectrum), cannot and could not relate in anyway to having a child with cancer or any other fatal (or potentially fatal) disease.
The way I see it, parents who make this argument don't know the difference between an inconvenience and a utterly life-altering, horrible, tragic circumstance. To them, autism has wrecked their lives. Their plans of little league and a walk down the aisle have been destroyed. They are irritated and aggravated. Their life has changed, and to them, this is a nuisance. Autism is an inconvenience for these parents. Cancer is a tragedy. Cancer causes physical pain and symptoms, cancer is heartbreaking. Children who have cancer must undergo surgeries, infusions, injections, pills, and more in hopes of saving their life. Families are devastated. Cancer treatments and hospitalizations create major financial debt for these families. They do not have a choice as to whether or not to try a treatment. The alternative is certain death.
No parent of an autistic child (who only has autism) has ever had to live through that. They've never gotten on their knees and begged God to save their child, and by save I mean keep their child here on Earth. They've never cried so much they were certain they had no more tears, because of how heartbreaking it was to see their child lying in a hospital bed, connected to dozens of wires and tubes. They've never felt sure they were about to vomit up their insides because of the unbearable stress, fear, and hell they felt when the doctor tells them the treatment was unsuccessful. They have no clue what that pain feels like. They have no concept of being a parent to a child who has cancer, or any other life-threatening disease.
I feel safe to say that any of my friends who visit a cemetery on their child's birthday would gladly switch places with me--on any given day. They would move heaven and earth to get their child back, and trust me, if part of the deal with God was that their child would stay alive but be autistic, they would not need even a second to shout YES absolutely!
This phantom connection that some parents try to make between their autistic child and a child battling cancer will never make sense to me. Cancer is not a nuisance, not an inconvenience, not a different way of being. Cancer is heartbreaking, it is torture.
End of story.
Autism acceptance, to me, does not mean that a child cannot have speech therapy or help with sensory integration. It doesn't mean that a parent shouldn't seek out support groups. I'm not saying you can never cry or have the occasional pity party. What it means is that first & foremost, I love my child. I see past any disability or difference, and see that she is my daughter. She has talents & gifts, she has likes and dislikes, and she is a joy. At times, it may be harder to discover those things, but they are there. She may require more patience, more time. Living with my daughter, and raising her, I've had to learn new parenting skills. I've had to think differently, react calmer, and be more creative. To me, all of those things have made me a better parent and a better person.
Autism acceptance to me, doesn't mean I deny that autism can be and is often disabling. It doesn't mean I look at autism with rose-colored glasses. I believe that autism is a neurological (with many psychological symptoms and/or disorders occurring as well) condition, one that most likely is genetic (and perhaps metabolic in some form as well). I also believe that a lot of what we (NT) see as autistic symptoms are sometimes simply a different way of thinking, reacting, or being. Not every aspect of autism is a symptom or needs to be "worked on." Also, so many believe that autistic children won't develop or change, that with time, they will not gain skills. Many feel like they have limited time to 'fix' their child, that they are in a race to save the child they once had. This is simply not true. Every autistic person I know of, specifically those who have not been giving supplements or other supposed cures, they gain skills & develop with time.
Autism acceptance means that I choose to focus on the good. The difficult things, are not the focus or the center; they are not all that my daughter is. The challenging parts are instead looked at as speed bumps or hiccups. And, trust me, some days are a LOT bumpier than others!!! I am a realist. We have moments that make my head spin. I feel helpless at times. I pray for answers and strength. I don't pretend to think that our life is a piece of cake, nor that it will be easy as the years go on. I listen to the doctors & professionals, I read books, I'm well aware of the possible challenges our daughter may face. I know that she may always live with us, or require assistance in her day to day activities. I'm not sure what her physical or neurological health will look like in 5, 10, or 20 years. I do know that wasting time & energy on worry helps no one. Especially not my daughter.
Autism acceptance means I have actively chosen to focus on the good. And, there is plenty there. Sometimes, you just need a new persepective to see it. I have had plenty of that persperctive. And, that perspective came from things in our life other than autism. In fact, they were way larger & scarier than autism could ever be. I hope to tell others that it's okay to accept autism & fully embrace their child. You are not hurting or harming them. If you give love to your child & allow their self-esteem to blossom, and show them acceptance, you have done nothing wrong. Your child has not lost their soul, your life is not hopeless, autism in nothing like cancer.
It's okay to want your child to be able to communicate--it may just not be the form you are accustomed to. It may be through sign language, picture cards, or a computer. It's okay if your child needs therapy to help with motor skills or sensory processing or speech, just be sure it's therapy that is respectful to your child, advocate for your child, ensure that he is being treated kindly by the professionals in his life. It's okay to want your child to be able to deal with sensory input easier. But, realize, your child may always rock, bob, or sway, they may always flap a bit or grunt at times. That's okay too. There is plenty of room in society for people to bend and alter how they perceive and judge others. We can all lend a hand in that, and really make a difference.
The minute you stop seeing all the negative, stop focusing all your time, energy, and money on fixing or curing your child, and instead embracing them, finding the joy, and accepting your life, the better for all. I think we all owe it to your children--regardless of skill, ability, or diagnosis.
What Autism Acceptance is to me....
Some parents I meet are downright offended when they hear "Autism Acceptance," and anything related to it. They have many false notions about this movement, and those of us involved in it. For one, they presume we all dance around all day like a bunch of nutjobs, thanking the heavens that our children are autistic, never having a moment of sadness or stress. They assume that because we have accepted autism & find joy in our life, then we don't encourage our children to communicate or groom themselves or develop in any way. That is just the beginning of their insane views on those of us who are part of the Autism Acceptance 'movement.' They have no clue that we tend to treat our autistic children very much like our NT children. They simply can't graspe the concept of looking past the "big bad Autism" & seeing just our child. They don't understand why we're willing to "accommodate" our child by offering alternative forms of communicating, quiet time, avoiding certain places, etc.
I have never said that life with autism is a complete round-the-clock blast. Life raising any child has it's fair share of ups & downs. People assume because I am able to find joy in my child & in our life, & thus, in autism, that my child is "less affected." This is a common argument they will throw at me & others. Where they get the term & how the interpret "less affected" is something I've yet to figure out. If you truly are autistic--whether it is classic autism or aspergers--indeed every aspect of your life is affected by autism. And, I don't know how one would ever get a clinical diagnosis if they were "less affected."
That aside, myself & others like me are often "accused" of having a child who is "less affected." That, we are in a separate realm of the spectrum than their (these other parents) miserable existence. That I just couldn't possibly relate to their life, their stresses. My child must be "high functioning" or "aspergers," they say (and, again, those two are apparently cake-walks). Because, there's simply no way, that if my child had the "real bad, shitty autism" (their words, not mine) that their children have, I could ever feel any joy in my life.
I've stayed away from specifics with regard to my child, as much as I can. I will say that her diagnosis is autism, and she's not considered 'high functioning' or as having aspergers. Again, I have come to know people and children with these various diagnoses of autism, and I've yet to come to the conclusion that any one diagnosis is easier or defines someone's future or their abilities. So, my daughter has autism, just like most of their children, and this tends to upset them.
It amazes me, each time I hear these parents speak, how quick they are to debate other parents. Time and time again, the parent who chooses to be bitter and see no joy in their child or their life, they will attack and belittle any parent who believes in the idea of acceptance or who has a child they feel is "higher functioning." They especially get infuriated with us who are finding happiness in our lives, autism and all. I have seen and felt this firsthand. My child is now verbal, but has the very typical communication issues of people with autism. But to them, the fact that my child can speak (& they want no part of alternative communication for their children often), this makes them bitter. I can't understand their pain, because I hear my child speak. They all promote that lie of someone who cannot speak, obviously has nothing to say. It makes them--these parents--feel better.
My child has sensory issues, she stims, she lines up objects, she hits, kicks, & bites, she has meltdowns, tics, a tremor, seizures, major feeding difficulties, developmental delays, self-regulation issues, etc. Need I go on? I could devote my life to only those details. I could look at my precious child & only see those things, only see what was wrong or different. I could, as these parents do, see only what was missing, what was broken, or what was lost.
Equally, I could look at my other child. I could say she talks way too much, has problems focusing, is overly-sensitive, is clumsy, and has sleep disturbances. She was slow to potty train, she is a very picky eater, and she still has trouble tying her shoelaces. Would people think it odd, if this was all I spoke about with regard to my child? If all I did was complain or stress over her inadequacies, her challenges, wouldn't those around me take issue with that? So, why the double standard? Why is it we have free license to bitch and moan over our autistic children? Why is it okay for us to not see any good and only focus on the negatives?
I choose to see the amazing things. I embrace the little things. How her laugh is the greatest music in the world. The kick I get out of her organizing the products on the grocery shelves (no, she doesn't work there!). The way she bounces up and down when she is happy. Yes, when she is happy. I do get stressed out, I have sleepless nights, I cry. But, to think about and only focus on the challenges, I would miss the big picture. The big picture is that my daughter is an individual, a person, and I never want to disrespect her. She is a gift.
I cringe each time I read an entry in a blog or message board, in which a parent bemoans their autistic child. They pity themselves, about the raw deal they got & how their son will never play Little League. They make statements like "well by the time he's 15, I'm sure he'll be in a residential center" and "God, she drives me absolutely nuts, I can't stand it & honestly don't know how much of this I can handle." It goes on & on.
If I thought that all of these parents were simply venting & making an anonymous statement so that they could better handle their daily life, that would be one thing. Unfortunately, in every case, these such ideas and statements are not just rants or exhalations. Sadly, autistic children are murdered each year. Society accepts these homicides, because the over-riding thought in the public eye is that raising an autistic child is so damn unbearable. That naturally, a parent would sink so low, and be capable of killing their own child--who wouldn't, with autism being so horrible? So, I can't simply read such things & brush them off. They hurt, and they spread this idea that autistic children & people deserve less. That we can bash them & disregard their civil rights because they are autistic.
"Not being able to speak is not the same thing as having nothing to say."
I really wish everyone would read this quote & really take the time to understand and accept it. I'm saddened by the amount of parents I come in contact with who are desperately hopeless because their child is nonverbal. They presume therefore all sorts of terrible things. One is that their child is not capable of much, including ideas or opinions. The other is that their child will ultimately be institutionalized. Another is that their child is unaware of what's going on around them, what is said about them, and also what is written about them.
So many people honestly think that if someone cannot speak, then there is nothing go on inside. They also assume that if someone walks around grunting or stimming or twitching, that they can't possibly be thinking of much. So many of these parents are tragically ignorant, and most aren't willing to open their eyes to this. They would prefer, I think, there not be a possibility that their child or the autistic adult is capable of higher thinking.
I hear time & time again, parents saying "if only I could hear him say 'mama'" or "it breaks my heart that she won't say 'I love you.'" I feel for them, I do. Before my daughter had words, I remember falling into that belief, that if she couldn't speak or say "mommy" that we just wouldn't be able to connect. Our neurologist is amazing & early on, he recommended sign language. We used sign language & picture cards. I yearned to hear my daughter say "ma." I thought that would be the most amazing thing. I was wrong. The day my daughter signed "daddy" was one of the most wonderful things ever. A few weeks later, she would sign "mommy" and then further down the road, it was "I love you." Seeing those signs, that was so beautiful. Those personal experiences, really made a permanent impression in my mind on this whole nonverbal issue. Being nonverbal, does not mean a child or adult doesn't have thoughts, feelings, or desires.
Parents are so close-minded to what communication really means. Often, they seem to take personal offense if their child cannot verbally communicate. They feel a 'normal' parent-child bond or connection can never be achieved because of this. Verbal speech is not the end all be all for communication--far from it. In this day in age, with technology, the options are seemingly endless. PECS cards, ASL, laptops, writing boards, etc. While our daughter is now verbal, she still uses PECS & signs, and I imagine when she gets a bit older, she'll use typing quite often too, as a form of communication. I'm excited for that. Speaking is very difficult for her, she tires easily, and is often very hard to understand. So, I'm excited for when she will have yet another option for communication, and I can't wait to 'hear' all she has to 'say.'
Not sure what was more annoying--her hair constantly falling in front of her face or her atrocious muscle tank. Very appropriate for a video to supposedly raise awareness on autism & help parents.
Some one-liners that really stood out:
"Oh my God...my son is gonna be like Rain Man."
"Find a DAN! Doctor..."
"No hope, no cure."
Changes to black & white when Jenny talks about her son banging his head, flapping, spinning, screaming. Same old film tricks these groups use time & time again...black & white, slow-motion, or quick, dramatic cuts.
States "it's bullshit" if someone tells your child with autism can't be helped. Wow, that's classy for a national organization's video.
Do I really need to write anything else here?? Here's a great video, that really makes all my points:
New name too.
Yeah, the last "Me By The Sea" was just one of those, song-was-on-the-radio and I-can't-think-of-a-blog-name moments. And hence that became the title of my blog--having little, okay nothing, to do with what I typically write about. I do love the beach...but I'm not blogging on hot surf spots. So, anyway...
The thought behind the new title is (yes, it's a spin on the Tylenol commercials, I would be nowhere without the greatness of Tylenol, so perhaps that's why inspiration struck there!) for people, especially parents, when they hear "autism" for them to just take a second (Stop.), and think (Think.)...take a deep breath & realize it's autism (Autism.) not the end of the world. Hopefully it makes sense to others outside of my head. ;)
Yikes--how long has it been?
About 8 months if my math is correct. I happened to look around, & have sadly found that a lot of the other bloggers who have commented on here & I'd read, are now gone (perhaps changed blog or user id's??). Anyway, that is sad. But, I understand. I needed a break. Around the time I last blogged, my daughter was having an increasingly more difficult time with meltdowns, and we had a school evaluation, and just life with kids, dogs, etc. Then came summer, which was wonderful, but also busy. And, all the while, we were in IEP mode, need I say more? I've got lots to gripe about. Lots indeed.
While I was absent from here, I have been to 2 message boards for autism. I stayed neutral early on, hoping to get support there. And I did. Lately, however, views which I am adamantly opposed to have been aired out repeatedly. So, I have spoken up. After weeks of this back & forth, honestly, my head hurts. I'll bitch on that a bit too I imagine in the coming entries. This whole autism thing--how us parents treat each other--is absurd at best.
I get more & more depressed when I think of the world my daughter will be an adult in. At this rate, it will be rather bleak & I can only hope to have found a magic immortality pill by then. People suck, in general. And the campaigns against autistic people continue, and very few are doing a damn thing for the adult autistic population. I suppose they're just hanging on that hopefully a "cure" will be found, and that God willing, this "cure" would be "successful" for my child, and then, thankfully they won't have to deal with her at age 21, 30, 45... Makes me just go nuts when I think about it. All the dollars being pissed away at finding some supposed cure--meanwhile how many children on the spectrum become adults on the spectrum each day? I'd love to see that stat. Then I'd love to see what is available to them--job training, life skills support, safe independent living arrangements, etc. I'd love to see the dollar amount going into this...then stack it against the "searching for a cure" funds that Autism Speaks, DAN!, and whoever else is on this mission to "stomp out" autism is using.
Well, this was going to be a short "I'm still alive" entry... So much for that. I've got plenty more to rant & rave on...and also to embrace & brag about. Stay tuned.