Who Picks up the Slack for Me?

A dear friend of mine asked me to post this for her as she felt unable to risk posting it herself. Can any of you relate? Can you help? Or even just comment to let her know someone else in this crazy world we live in, gets it.

Image from visualizeus

I recently saw John Elder Robison (author of ‘Look me in the Eyes’ and ‘Be Different’) speak. He was brilliant and inspiring. At the end of the discussion they had a question time and there was a lady in the front row who asked, “I am a wife of someone with Aspergers and my question to you is how does your wife stay married to you?” 

This sounds incredibly shocking doesn’t it? And for a moment I gasped and then I realised that John took no offence to it what so ever. In fact he answered that she did not stay married to him, but he found another wife who did. He answered that for their marriage (the second and current marriage) his wife has a high emotional capacity where his is low and he has the high logic capacity and hers is not as high, so they are a good match. Also that she does not expect things of him that he cannot give, she knows his limitations and they have open communication, she doesn’t get cross at him for things that he ‘should’ know. He expressed regret that he couldn’t help this lady more in his answer and mentioned that he is asked that question often from women all over the world.


I sat there all inspired about how awesome Aspergers is and thought to myself, “yep, that’s so true. Don’t expect things, you need to be specific and ask for them”. Feeling all smug I drove home.


I have a son who was diagnosed with Aspergers nearly 3 years ago... he is 8 now. My husband as a child was diagnosed with ADD but since receiving my sons diagnosis we have figured that perhaps that was wrong and we strongly suspect that he too has Aspergers. I think that the best way to describe the ways in which his ASD (or ADD officially) affect him is that he expects things to be done ‘his’ way. He thinks something and says something and expects that instantly you will understand and agree. There is no grey area, if I have not heard properly or the question is not said explicitly enough for me to understand and I ask for clarification I am met with exasperation! Things are meant to be done a certain way, to do them other ways is met with great frustration.


Rules... not written in stone nor a poster on the wall but rules written in the fabric of his life which we need to comply with. Internal focus, incredibly intrinsic focus. I will stand and listen to a discussion for 10 minutes about something in particular that has happened or of interest...then I start talking and at times he just walks off, or he interrupts or changes the subject. So I stopped talking. Then I am in the wrong for I do not share, I do not discuss things with him.


Questions are asked in statements which come across at times incredibly harshly.”Didn’t you get milk today?” instead of “Did you get milk?” When I point out the different ways these two sentences make me feel I am questioned as to what the difference is? Why should he ask if I got milk when it is obvious I didn’t because there isn’t any there! My thought to that is (it used to be the answer but then the argument following and exasperation at my not understanding his logic and point of view is not worth the time) ‘why even make the statement then if you can see that there is no milk!’


His mother is from the old school of doing absolutely everything for her family. Everything. I admire the loveliness of her home and the way in which she brought them up securely and comfortably with beautiful food on the table each night. I do not admire the fact that her son had developed a preconceived notion that that is the way things should be done for him for the rest of his life (a notion which she told me I had an obligation to do for her son... we haven’t talked much since that day). We married young and despite my voicing the fact that I did not grow up in a house where the woman did everything and therefore would expect him to do things around the house etc, my words obviously fell on deaf ears. Or did not fit his preconceived rules about the role of a wife and mother.


Standing in the kitchen he will say, “just look at this place! It is such a bloody mess!” and then he will turn on his heels and walk out of the room. His plate has in the last year been transported from the table to the bench after dinner (after much nagging to change the before behaviour of simply leaving it there and walking away). I could push and nag to get dishes done, but more times than not the banging and crashing of the plates and cutlery as he does it either smashes one (and it is never his doing, always a cause of the dish or the way I had stacked them) as he expresses his disgust at doing them in much the same way my 6 year old expresses his disgust at packing up his toys! It is not worth the hassle.


The world owes him much. I owe him much and it is my job to make sure that all of our worlds just keep on flowing and ebbing along nice and smoothly. I do all the sports runs and therapy and school runs... I also work. Anything to do with the kids... I do. I am not bitter about this, I love my kids more than anything else and would do anything for them. I love my husband too... but I am not sure how much longer I can be all of their alls.


You see I am diagnosed with depression and have recently had an increase in my meds which has caused a decrease in my coping skills! Clearly there is something in me reacting to them and I am seeing my therapist to discuss it today, hopefully if I change meds I will regain some control... control... which has at times over the last few weeks been completely void in my life. I cannot cope with the day to day. I get through the things that need to be done and then am too exhausted to deal with the things that should be done and well need to be done but if no one is coming over then they can wait.


Dishes, washing, sweeping, vacuuming... housework.


My husband knows of my depression and downward spiral and yet other than trying very hard to regulate himself so that he doesn’t say too many negative things to me he has done little else.


This morning I went to pay for my daughters swimming program through school. The note had been lost under the car seat and we had not paid the deposit for it. She cannot go as a result of this, it is too late. I got to the car and drove off past the school before the tears began to fall. By the time I pulled in the driveway at home I was sobbing. My toddler asked me if I needed to wipe my face and I answered "yes I do honey." My friend is coming here in about an hour and a half to watch my toddler as I go to the therapist and my house is a complete disgrace. I stood at the bench, barely seeing through my tears and feeling like a complete and utter failure and the thought popped into my head...


Who picks up the slack for me when my world is completely falling apart?


That smug version of me, agreeing with John Elder Robison that day and the advice he gave to the wife of a husband with Aspergers, is currently living somewhere else.
Right here, right now I am her best friend, her carbon copy and I am wondering... how do I keep doing this? How do I keep taking the constant negativity, managing meltdowns from all the children and my partner, always trying to do and be everything because it is easier doing that than putting up with the arguments or discussions about it? To leave him feels like a betrayal as he cannot help the way he behaves... but then I think of the therapy I am doing with our son and wonder why it is that he is unwilling to try? If his son can then why can’t he? But to leave feels just as hard as to stay.


Are you married to someone with Aspergers? Are you that lady on that day wondering, how do I stay married in this situation? Do you understand?



on behalf of a friend.

The Guilt of Good

I haven't posted here in a long time. It is because I feel guilty posting when things are good. They are. Good, really good. He is happy, he is confident. The powerful pull of personal growth has changed from a puberty monstrosity to a pleasing maturity. Was it the increase in fish oil capsules (his idea)? Was it the stepping up as we battled the system with his Nanna? Was it the loss of his Nanna? I do not know.

I think all those years of therapy and work may have had something to do with it. I think he is growing up. I think he is happy in his own skin.

I feel guilty posting of this when so many others are struggling. Then I remember. This is not wrong, it is not boasting, it is hope.

Things do change. Sometimes for the better. Usually when you least expect it.

also blogs at Meaninless Meandering from a Madmother

The undiagnosed Aspie one....

We walked into the paedeatricians office that first time and sat down to discuss our son. The school had told us, "we don't acknowledge the school psychologists assessment of Aspergers as true until he also sees a Paed for an official diagnoses". 'How odd' we thought, but finally we had found one. He looked over the tests, he asked some questions, he diagnosed him there and then.

Aspergers Syndrome.

"Has anyone else in the family been diagnosed?" the Paed asked.

"Pardon?", we replied still gobsmacked by the affirmative of a minute ago and puzzled as to this new question presented to us.

"Does anyone in the family have Autism or Aspergers? is there a family history?"

"Um, no...not that we know of. Not diagnosed" we replied, puzzled as to where this was going.

"No-one with any strange characteristics etc?" the Paed continued.

"nope, not that we can think of" we replied as the conversation then turned in another direction.

That was over a year ago. A small, non-consequential part of a larger conversation that should have been lost in the fuzzy parts on the edge of my memories as being useless knowledge to keep but instead lodged itself there in the 'important things to remember' part of my brain.

As the year progressed, as I learnt more about Aspergers and how to help my son that one little memory would continue to pop up over and over again. Is it heriditary? I don't believe so. Is it likely that someone else has Aspergers in the family? it is a probable possibility.

Who?

Day to day life is so hectic that I find chasing after my children and dealing with my Aspie sons therapies that my life is full to the brim. Perhaps I don't spend enough attention, perhaps I missed all the signs, but then there was one family member who began to jump up and sit in the chair right next to that little question posed in my memory oh so long ago as a definite possibility of having Aspergers too.

We talked about it, we thought about maybe getting an official diagnoses, something which has not occured, something which I cannot push on that person. As my sons therapies go on, as my patience wears thinner, I find my tolerance wears even thinner!

The puzzle pieces they began to click together and I wonder. Can you say that someone has Aspergers even if they do not have a diagnosis? is it real only when you have that piece of paper that says it's so? I know this is something that has been debated over a long time by others before me and within the Autism community.

This other person, there is no doubt has Aspergers. He has the same traits as my son. He believes everything that happens is because of or a result of something he has done. He is incredibly intrinsical and has many of the traits. He is a living, breathing, bigger version of my son, almost a direct carbon copy. His story is not mine to tell.

Why even mention it then? because I am struggling to cope with all that is coming at me from both ends of the spectrum here right now. Spending hundreds on therapies for my son of which he works hard at, only to see that the bigger one continues to display those behaviours we are attempting to change in my son, with no care to change them himself. As that bigger one is someone my son upholds as an idol, I am fighting a battle to prove just why he needs to change those behaviours himself. Being spoken to with a voice of contempt and disgust when things are not going the way they deem it to be, tag teaming their times to do this, one after the other. Angry outbursts, expletives thrown out at several intervals when frustrations brew over, when they don't know how to handle or what to do with their emotions.

I am their safe place, their island on which to stand and let it all out because they believe that it is only with me they can do this. That I get it, that I wont leave them if they do. They put their mask on 'out there' and they conform 'out there' but on my island they don't need to. I can handle one....but two is often too much. I am human, it is breaking me.

So what do I do? how can I help someone who doesn't believe they need it, but so desperately wants life to continue the way it always has despite the fact that it just cannot? How? how? how? Yes, right here where I am...Aspergers can definitely definitely SUCK! :(

We're in with the In crowd.

Here in Melbourne my son and I attended our first World Autism Awareness Day march, from Autism Victoria through the streets and up to the steps of the State Library, on April 2.

For the first time in a long time I could see a difference in my son as he looked around at the mass of people thronging on the nature strip in Drummond Street, Carlton, awaiting the signal to start marching.

I kept a tentative anchorage for him by lightly rubbing his back now and then, to reassure him I was there if he needed me; at one point he actually turned to reassure me that he was fine, thank you very much.

I looked at him and realised there was an inner glow, a lightness and happiness to him that I had not seen in a long time.
It took a few seconds for me to nut it out but it was so simple; he wasn't the odd man out in a crowd for the first time in years.

How often is it drummed into us parents to assist our kids to integrate with neurotypicals, to have them socialise with them as much as possible to get the old 'monkey see, monkey do' happening with social behaviour, yet somewhere in following the rules we kind of miss the message our kids need to know they aren't the only ones who think, process, talk, walk, just plain are different.

He proudly marched with others, he shared smiles and grins, moving out of the way for mothers with prams, returning waves to strangers who stopped to watch and wave to the marchers but the most compelling, the most empowering thing for him that day was to realise for himself that he was a part of a whole community and not just the novelty Aspie geek kid.

Next week he attends his first Aspie teen social support group and he's almost bursting with excitement to just be another face in the different crowd.
Cos the different crowd rocks.

And it will keep on rocking throughout May as Autism Awareness Month in Australia.

Ro is from Australia; she has a partner on the Spectrum and is the mother of a 13 yr old homeschooled Aspie teen studying at University, both of whom have recently given her permission to blog about their challenges with multiple diagnosis' alongside Autism at Get Over It...I did.

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Ok, so it's not all flowers and rainbows with autism

"Mama, I don't LIKE it!" My JBean wasn't happy. Although this is not that uncommon, it was still a concern. The Nutcracker was coming up, and she was due to perform.

Last year, she was a flower. "I liked being a flower mama. Flowers are graceful, and princess-y. It was a pretty dance." This year, she was a lamb. She is less-than-thrilled.
"I hate the Lamb Dance! It's stupid. The costume is silly, I look like a little kid." I figured reminding her that is indeed what she is? Not so helpful.

Early on, I told her she didn't have to dance if she didn't want to. The Stage Mother? I am the furthest thing from that person. You won't see me pushing my children against their will. I have a theory about extra-curricular activities: if it isn't fun, what's the point? This may be because I was, if not born with two left feet, in possession of them now. Dancing well is hard for me, and I don't have autism. Still, if I were to try to dance, with actual choreography, you would think I was having a seizure of some sort.

I have given her every opportunity to bow out gracefully. She won't be a prima ballerina; she is still in the first-level class. All of her friends have pretty much moved up a level. She just isn't ready. As a parent, my heart hurts just a little bit for her. I worry as she gets older, girls will make fun of her. But she won't quit. She assures me that she wants to dance. And she does. She just doesn't love this dance. Still, she is trying, and that's all we can ask. To me, that in itself is a victory.

This Spring, she again will dance. This time, she will be a rainbow. She will wear a pastel-colored tutu. She wasn't excited about the costume, but she'll get used to it. And I have decided to get her some private lessons to get her "over the hump." I am optimistic that she may improve. She told me she was passionate about her dancing. I guess it is good to be passionate...do you really have to be good at something to love it?

Now I am looking for a triumph over the fear I have for her. The great, white-hot worry that wakes me at night. I think of the time that is coming, soon, or not-so-soon, when the girls look at her and laugh. When they look at her, whispering behind their hands. When it hits her just how behind she is, and that without 10,000 hours, she just isn't going to get those dance solos that she may be wanting. She will be tried, and found less than adequate. And though we cannot keep our children from pain, it is still a very difficult thing to watch. A lump in my throat and tears pricking my eyes, I wait.

Tina has two left feet and the right attitude, usually. Chocolate helps. She also blogs on Send Chocolate Now. Autism Sucks is her brainchild.

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What color is autism?

“Isn’t the sky the most beautiful shade of cerulean blue today?”

I thought he was color blind, because when I asked what color an object was, he would tell me the wrong one. In school, turned out not only did he know cerulean blue, as he told his teacher, he knew the entire box of Crayola 64 crayons! He wore an Indiana Jones fedora for three straight years. He wouldn’t wear anything but tan pants to “look like Indy” for at least two years. When he was younger, I had to flush the toilet for him, he couldn’t stand the sound. He loved water play and would spend hours playing at the sink. He hates to cut his hair. He can tell you more than you ever wanted to know about UFOs, Mythbusters and the latest video game to capture his interest, but he couldn’t tell the librarian his phone number. He cries easily, especially when frustrated, which also happens frequently. He knows what direction he is traveling at any given moment. He notices details that would escape most of us. Like the time they painted a gas station bench…the new color, the old color…doesn’t matter. He remembers. But he can’t recall his math facts. He doesn’t like doing activities that are not of his own choosing, and hates to perform on cue. He cannot eat gluten or dairy without a lengthy side trip to the bathroom. Consequently, he is on a special diet. He still moves snails out of harms way, just as he once did when he was two. He is now eleven.

She yowls like a cat when she is angry. Hours are spent in solitary play. She is very imaginative, creating elaborate worlds in her play, but other people don’t easily fit into her scenarios. She can be very rigid. She likes routine. She has a hard time with transitions, even when it is something she really wants to do. Her self-control, while improving, can be difficult. She eats almost anything, and more than you would think…she is a elfin little thing. She cannot read well yet, and doesn’t so much want to. She must be taught concepts repeatedly in order for them to take. Sometimes they do. She is a sensory-seeker, needing a lot of hugs, cuddles and attention. If she doesn’t get it, she will act out negatively. We call it “getting her pound of flesh” one way or another. Her whole life is a song. Even her voice is a song: a high-pitched melodious voice is used in conversation. Unless she is yelling. She speaks in half sentences. “Want cookie!” She is social, and loves having friends. She likes being in charge. She has trouble understanding changed decisions…she is certain they are lies. If I say something, I must follow through. She has a memory like an elephant, when it comes to things she cares about. She throws the worst tantrums I have ever seen. She is eight.

She loved to swing as a baby. At three, she threw horrible fits. I would have to hold her to keep her from hurting herself and me. In preschool, while other girls wanted to be a mom, she told her teacher she wanted to be a paleontologist. When her teacher expressed confusion she told her, " You know, a scientist that studies dinosaurs. Everyone knows that!" She taught herself to read at three and a half. She was reading chapter books by age five. She was a walking dictionary. She loves Biology, genetics, Latin, Logic. She is very literal, black and white and has a strong sense of justice. She doesn’t always pick up nuances. Interruption of conversations comes naturally to her, but not because she is rude, she just doesn’t get the rhythm of the talk. She understands sarcasm, but doesn’t appreciate it. She struggles with perfectionism, and a lot of anxiety. She taught herself to knit and play the piano. She tries hard to fit in with her peers, but there is always something just different about her. We say she is the “oldest thirty year old” we know. She is fifteen.

Some may say, “Well, sure, that is any kid!” But truly, my kids are like the amp in the movie Spinal Tap . Most amps went to ten. But the one in Spinal Tap went to eleven, “that’s one more, isn’t it? ” And that’s what my kids are…just a bit more.. a bit harder. This is what autism looks like in my house. I have no idea what causes it. I only know I watch my children struggle with it. We are fortunate, I suppose, since the picture I paint you is of high-functioning autism. They all have speech. They don’t spin. Or flap. But it still affects our lives. We walk on eggshells. It isn’t so much a cure I want…as an answer of what caused it, but if you ask my kids, they will tell you they want a cure. They say it is hard to live in their skin. I can see that’s true.

Every day, I see that’s true.

Tina Cruz is a writer, wife and mother of three children, two who have high-functioning autism, one who has Asperger's tendencies. She advocates for autism awareness and education, as well as acceptance. She views autism as a growth process and the opportunity to connect parents for support as a privilege. She is the Special Needs Editor at typeamom Orange County Special Needs Kids Examiner at Examiner.com, a featured blogger at OC Family and her own site, Send Chocolate reflects her passion for her children and autism. t Autism Sucks is her brainchild.

Supermom vs. Autism

I was standing in line at the grocery store, waiting to pay for the basket full of groceries I had amassed on my once a month grocery stock-up. I hate
grocery shopping, especially with kids, but I had procrastinated too long and the bread had molded and we were out of milk. My children were trying valiantly to hold it together; it was late in the afternoon and had been a long day. Grocery shopping is a break from the Routine that basically rules our lives, so often there is a difficulty in this endeavor. But today the children were on their best behavior. They were helping put
groceries on the conveyor belt, while JBean kept up a steady stream of chatter. Today it wasn't them, it was me. My head was throbbing: I needed caffeine and I needed quiet.

My son decided to chat up the person behind us: "Do you like Mario Kart?" The person mumbled something politely, too quietly for me to hear. JBear took this as an invitation and continued, "I have Mario Kart for the DS. I also have a Wii. Do you have a Wii? I like playing boxing. I am good at boxing." I glanced back and the woman he was talking to seemed ok with her verbose companion, if a bit noncommittal. My son continued:

"Did you see the Indiana Jones movie? I did, it was
good. They have the Lego game of Indiana Jones for the Wii coming out next month. I want that. Lego also makes a Star Wars game for the DS. They are making one for the Wii, but it's not out yet..."

Again, I glanced back and saw the woman shuffling her feet, looking around nervously. Time to reign him in. "JBear, shh! Come help me with the groceries." He didn't hear me. I had to call him three times. Then he started asking for gum at the checkout counter. And a yo yo. Pleeeeease? He has this trip-switch, when he has something on his mind, when he wants something, he just keeps asking. I don't even know if he realizes he does it. About that time, the lady got that look. Oh, you don't know the look? Simple.

When people notice something is a bit different with your kids, they react in one of two ways. The first group widens their eyes in amazement and says, "Boy, you sure have your hands full!" And yes, yes, I do. But it is what it is. I don't have an "S" embroidered underneath my t-shirt. I am just a mom, dealing with what I have been given. I don't want praise and I don't want pity. But often, they look at me as though I stepped from a space ship, a complete alien entity. If I throw the homeschool aspect in to the conversation, I see the door slam shut, the eyes cloud over, and I can almost hear the voice in their head as they thank the Lord that they don't have kids like mine, and thank goodness it isn't contagious!

The other group I encounter widens their eyes in surprise and says, "But they seem so normal." This is actually frustrating. This is the reaction I get when I try to explain Asperger's. I know that on the spectrum of special needs, Asperger's is considered pretty low. And my kids are actually mildly affected. Their behaviors are more annoying or frustrating than dangerous. My son has not eloped from a classroom since the First Grade. Of course, it helps that he has been homeschooled since the Second Grade, I suppose.

He does have an anger and frustration problem. In fact, when he is angry, he could give a salty dawg a run for his grog. He has recently decided that it is really cool to respond to any insult, real or imagined, "I know you are!" You can imagine how productive that is! He is in the habit of cornering people, because he is a social guy. He wants to interact, and find interesting things in common, but he doesn't pick up the cues when someone has had enough. I am constantly playing watch dog for him, translating so they will not miss out on what he has to offer, worried that people won't like him. Or worse maybe, they will judge me because of who he is.

I am not in the habit of explaining myself to random strangers, but I must be lacking. When I do try to explain to someone who inevitably asks, "What's Asperger's," I can sometimes hear, "Well, all kids do THAT." And yes, that's true. All kids do prattle on about minutiae. All kids have terrible table manners. All kids get mad and frustrated and yell. All kids don't know how to figure out when you have had enough of them. All kids interrupt. All kids wear the same clothes, every day, even if they are dirty, and get ticked off if told they can't wear that shirt again until it is washed. All kids harp over and over again about allowance, video games they want, going to the library...whatever it is that is on their mind at that very moment. All kids throw fits when they don't get their way. All kids need help getting dressed, even when they can actually accomplish this task themselves. All kids have unreasonable fears and cannot take out the garbage at night or get up to go to the bathroom in a darkened room. But the point here, is mine do it more. That's what Asperger's and High-Functioning Autism looks like. I didn't want bragging rights. I am not trying to one-up anyone else. I am simply trying to live with kids who have to live with "mild-mannered Autism." Anyone who uses this term clearly has never lived with nor experienced autism.

I don't play the Label Game. I don't have Munchausen Syndrome by Proxy. I don't find my identity in being Supermom or having kids with "special needs." We sought a diagnosis for my son simply because he wasn't functioning in school very well, and we started seeing some signs at home. I knew something was wrong. I wrote a letter to the school, asking for an evaluation. The district did their tests, gave us their result, and then we obtained our own private evaluation. We ended up with a diagnosis and an IEP. With some interventions and by educating myself, we found accommodations that worked for him. I learned how to talk to him, how to calm him down, how to provide a sensory diet and just learn to live with the quirkiness that can be autism. At some point, I started rolling with the flow, and it became, if not easy, something familiar. And, it was okay. I thought that was the end. Autism had touched us, but it was a tentative touch.

Cut to 2006. Those who read will know this already, but we had a house fire, and lost everything. The house was standing, but they gutted it, and rebuilt everything but the bones. Every item except for the clothes on our backs was destroyed. Of course, we all took it hard, but my then-six year old was particularly devastated. It was and is, the only home she'd ever known. On a good day, she keeps most of her emotions to herself. This caused her to retreat inside herself. She would build little worlds with her My Little Ponies, and Littlest Pet Shop, barricade herself inside the toy houses. Walls of toys would sit between her and the rest of us; she was shutting us out. We sought counseling, and of course, the question we all had was, is it the trauma or is she also on the Spectrum as well? After what we thought was a failed bout of counseling, it proved to be the catalyst and we decided to have our little JBean evaluated for autism.

I went back and forth, second-guessing myself. Autism is a spectrum, and there is a saying, "If you've seen one kid with Asperger's, you've seen one kid with Asperger's. My son and daughter are as different as night and day. I would look at her and think, "No way she is on the Spectrum...she isn't like JBear." I waffled and tested her myself, and I wanted to be wrong. She was diagnosed with autistic disorder two years ago.

So when the woman behind me gave me that look, I just smiled at her and said, "Kids!" About that time, the cashier finished ringing up my groceries. There is a time for education, and there is a time for cutting your losses and just getting the heck out of Dodge. So I'm sorry to the autism advocates,just know some days I fight the good fight. But today I pulled myself up by my bootstraps. This wasn't the day to try and educate the public. This was a day to take my children home with me, cuddle them close and read books while munching cookies. This was a day to just be. I swallowed the lump in my throat that came from unshed tears. Yes, sometimes I grieve for what they don't have. And maybe that's not what Supermom would do. As I rolled out to the car, I realized the lump in my throat wasn't just grief. It was something else, as well. It was a fierce, protective love, and a knowing that I am exactly where I am supposed to be. And I don't think that Supermom could have it any better.

T, who just does what she can do some days

Tina Cruz is a writer, wife and mother of three children, two who have high-functioning autism, one who has Asperger's tendencies. She advocates for autism awareness and education, as well as acceptance. She views autism as a growth process and the opportunity to connect parents for support as a privilege. She is the Special Needs Editor at typeamom LA Special Needs Kids Examiner at Examiner.com and her own site, Send Chocolate reflects her passion for her children and autism. t Autism Sucks is her brainchild.

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Now we are condoning discrimination? oh, HELL no!

Sorry, I am crossposting this on all of my sites. I simply feel the issue is too important to ignore. Thanks!

You might remember earlier this year about the teacher from Port St. Lucie, FL who had her class vote on whether Alex Barton, a child with autism, could remain in her Kindergarten class. He was voted out, traumatized and refused to return to school. There was a great uproar and teacher Wendy Portillo was suspended without pay for a year with her tenure revoked.

The school board quietly reversed its decision this week..please read the rest here, and trust me, you need to read it.

Tina Cruz is a writer, wife and mother of three children, two who have high-functioning autism, one who has Asperger's tendencies. She advocates for autism awareness and education, as well as acceptance. She views autism as a growth process and the opportunity to connect parents for support as a privilege. She is the Special Needs Editor at typeamom LA Special Needs Kids Examiner at Examiner.com and her own site, Send Chocolate reflects her passion for her children and autism. Autism Sucks is her brainchild.

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Some Thoughts on Autism Awareness Month

The month of April has come to a close, and with it ends Autism Awareness Month.

However, so many of us don't have an end to Autism. It is an ongoing, daily struggle filled with accomplishments, setbacks, discoveries, joy and pain. It is a journey, and the topography changes moment by moment. However, it is filled with the most wonderful people you could ever come across.

But we as a community are fractured. Broken. Divided.

Split along lines that should not be there; dividing a group that needs to band together to help our children and our friends and family members gather hope and strength to face our special brand of challenges.

To help us weather this storm.

Here are some things I would like the Autism Community to really think about and consider making changes to in the next year:

• Start thinking about what the future holds for our children on the Spectrum.

  Our focus has been laser-like on the birth-to-three side of the disorder, and you will hear no argument from me that early intervention is key; but in our haste to put all of our eggs in one basket and cure! recover! heal! we have overlooked a large group of children on the spectrum that still need assistance - the Adults. All of these children grow up to be adults, and as they age, the assistance gets less and less. The transition from young adult to adult is equally as important to a child on the spectrum as it is for that same child during early childhood. We need to remember to look at their lives as a spectrum as well, and provide assistance throughout their entire lives.

• Acknowledge that not all children can be "cured" of Autism, and that most are not.

  This is what is fracturing the Autism community and giving false hope to parents. I am not Jenny McCarthy, my child is not "cured", and many of us need to be okay with that. My son is a teenager, and while he has grown by leaps and bounds, he still has challenges that will plague him the rest of his life. We need to be okay with the thought that this is a process. I tell my friends that have read Ms. McCarthy's books (I have as well for purposes of full disclosure) that I would like to see what she has to say in a few years when her son gets older. I think she will find that the "cure" she spoke of in her books is not the permanent one she was hoping for.

• That money has been funneled into the wrong areas for far too long.

  Many parents, myself included, are tired of hearing that more money from Autism charities are being funneled into discovering how this happened and which additives in vaccines caused this. Should we "Green our Vaccines"? Absolutely. Should we change the schedule? Probably. Should we be the only group saying this to the world at large?

  NO.

  We need to find another soapbox that fits the needs of ALL of our children on the Spectrum, not just the ones who get the most air and face time. Not just the younger ones.

  If you are going to Rescue an entire Generation, it helps to make sure you include everyone, no?

• Start building a community; one that serves ALL in it.

  I had the pleasure recently to spend time with a group of kids and their families that cancer had touched in some way, shape or form. What struck me deep in my heart was the bond these people share, the closeness, the support. People from all walks of life, celebrities, sports heroes, all donate time, resources and money to support and care for these families in this scary, rough and expensive time. And they keep on giving and many pay it forward after they no longer need as much help. The Autism community has nothing like this, and quite frankly it breaks my heart. If we had had even one-tenth of this amazing resource to help families share, bond, get assistance, and gather strength and hope; it would be amazing. If this help is available to us currently, it more than likely has strings attached. Strings of "cure".

• Remember that we are not perfect, and that there is so much to learn.

  Take a class. Listen in on a Webinar. Read. Discuss. Tell your story; don't be afraid or embarassed. We need to learn from each other. We need to spread the word. Autism and Spectrum Disorders are relatively new to the world vernacular, and we need to raise awareness. That being said…

• Don't scare people by sending frightening messages related to Autism.

  Don't equate Autism to a plague, or a horrific act. Someone who I follow on Twitter sends out messages about Autism that only confuse and frighten people. Scaring people into learning about Autism only mixes our message even further. There are many people who are coming forward and revealing that they have ASD and grew up during a time when many had no idea how to work with people who had Autism. Their stories are inspirational, and we need to pay attention.

• Appreciate how far we have come…

  Autism has had more air time in recent months than in previous years. That's a good thing. The fact that there are services for our children, therapies and interventions to help our children grow and function in society is something to be proud of. The accommodations in the schools and the support staff to help our children has increased three-fold. It's wonderful to see.

• …but remember we have so much further to go.

  We need to do more. We need to ask for more. We need to demand more. We need to ask for more services. We need to build an infrastructure to support our families who have no idea what to do or where to go when they are just starting down the road. We need to help those still struggling down that road. We need to work with the medical community to build a stronger protocol to get testing and services for our children earlier than second grade.

• So let's get together and feel all right.

  Let's get together on our global message and remember to include everyone, not just the people that fit a particular (cured) category. Let's work together to spread the collective word that while some children see great improvement with different interventions; let's remember that one size does not fit all, and we need to look at the bigger picture for our children. The lifetime picture.

  So, same time next April then?

crossposted on 5 Minutes for Special Needs Shash is a mom of 2 boys, one with Asperger's Syndrome and one we're not sure where he'll land on the spectrum. You can find her tipping at windmills as a Teaching Assistant in an Elementary School. Shash also writes at her home blog, Diary of a Crazed Mommy.

In my house, EVERY DAY is World Autism Day

I'm not sure if you are aware of this, but I have a child who is Autistic. You may not know, or even realize it when you meet him. It might take a few minutes. Or an hour. But at some point when you meet my son, you will begin to notice he acts different. It might be the way he flaps his hands. Or the way he hums to himself. Or the way the conversation he has with you keeps ever-so-slightly going back to the things he likes. It could be because you notice the things he's interested in are younger than he is; or he talks older than his years. You might notice his anxiety. But, if you don't realize it, that's okay too. That's okay because we have worked very hard to help him fit into society's mold. We have embraced Early Intervention, ABA, ESE, Inclusion, and a myriad of other therapies and interventions. (Thank you, Quest Kids and UCFCard!) In short, we have worked very hard for you not to notice the Autism. However, it is a part of him. It is him. Those quirks will never disappear. They may diminish, but they will never fade totally away. And while it is okay with me, it is clearly not okay with society. I say that because the media heralds the "Recovery of Autism"; that "Autism is Reversible". I guess in some cases it could be. Just not in any cases that I know of. That I personally know of. Not to mention, the cases that are brought out to the media are the young kids. The ones who benefit from Early Intervention. Many Autistic children will benefit from Early Intervention therapies (my son did!). The articles about older kids are usually how they are coping, how they are adapting to society. How they are dealing. Because it is difficult. Because it is hard. These young kids grow up. They become adults. And while Early Intervention can and does help Autistic kids, those kids get older; and as they age, the therapies, the interventions, the assistance gets less and less, until there is no more. Until they are totally on their own. So today, on World Autism Day, while we should celebrate our successes and appreciate how far we've come, we also need to realize how much further we have to go. We need to reevaluate how we help our children grow into and become adults. Interventions and assistance should not and can not stop when they need us the most. And they do need it. Don't be fooled. Starting today, let's discuss what we can do, how we can do it, and what we need to do to get this ball rolling along. Talk to me:

• On Twitter
• On Facebook
• via email:

The clock is ticking. His life depends on it.

Shash has two amazing boys, one with Asperger's, a form of high-functioning autism, and in her copious amounts of spare time is a Teaching Assistant in a special needs classroom at an elementary school. Read more about her life and family at Diary of a Crazed Mommy>.

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