Sunday, December 7, 2008

For the Holidays

Just a reminder that the Holidays can really suck if you have a child with autism. Sucks for them, sucks for you, sucks for everyone around. In regards to the kids, it's mostly overstimulation. Too much going on, changes in their routine, overload of gifts and people and BOOM! Meltdown City. Sometimes it just can't be helped, but try your best to make things business as usual for your kids on the spectrum. Don't let your relatives push you or your kids into a situation that will lead to even more chaos. If you have determined that your kids can only handle opening 3 gifts at a time without going into a paper tearing, package wrecking frenzy, then don't let great aunt Sally push another present on little Johnny as she says, "Oh, it's just one more! What can it hurt? I want to see his face when he opens it!" (side note: often little Johnny will not ever remember who gave him what, let alone remember who great aunt Sally is.) If this does happen, great aunt Sally will be the one with the weird look on her face as little Johnny opens the present, takes one look and tosses it aside, as it's not what he's currently fixated on. It's also a very lonely time of year for us grownups. Often, even our families don't fully comprehend what autism is (heck, they don't live it 24/7). They shake their heads at the kids' outbursts, furrow their brows and look aghast at the weird behaviors, and often will request that you and your 'special' kids come late and leave early, if you're invited at all. You'd think that people would be more accommodating, as it's the kids that have the disability, yet all sorts of otherwise 'typical' adults are either so uncomfortable with your kids autism or so inflexible at having their 'good' holiday 'ruined' that they just don't want you & your non-typical mess around. I learned, after many years of trying to integrate the boys into the usual family gatherings, that it was too rough on the boys, as well as me. Now we host Christmas Eve at my house, we invite everyone, and only ask that people let us know how many are coming, so we can have enough food and time to prep the boys. This is good for the boys, who can wander off at will and play with those things that are familiar to them. The problem with this set-up is that a lot of time, not everyone comes, or they will come late and leave early so as not to have to deal with the autism world too long. Either way, you often find yourself alone for a good chunk of the holidays, with only your autistic non-social kids to keep you company. I have no solution to this, other than to tell you to keep tabs on your friends who also have kids on the spectrum, because they're the only ones who really know what you're going through. Total side note but also relevant - please be careful of light displays with blinking or flashing lights. These can often trigger seizures in special needs kids, and just because yours hasn't had one yet doesn't mean it's never going to happen. Better to be safe than in the emergency room on Christmas. Bobbie is the mother of twin boys with autism, one high-functioning and one lower-functioning. She doesn't have time to blog, but you can follow her on twitter: @Bobbie42

Saturday, November 15, 2008

For Parents Who Are Torn Between Autism Acceptance and Autism Treatment...

If you feel torn between accepting your child with autism and treating them, there is no need for you to. That’s right; you do not have to choose between accepting your child who has autism and treating their autism. You can do both. I repeat: You can fully accept your child with autism AND you can treat your child’s autism without in any way diminishing your acceptance of or respect for your child. You should unconditionally love and wholly accept your child who has autism simply because he or she is your child. As parents, we love and embrace the children we have been blessed with because that’s what parents do. As parents of children who have autism, we must acknowledge that autism is a part of who our children are and that autism will affect them, us, and other loved ones… because that is our reality. Our children are who they are, and their autism is an important element of who they are. We must accept them for who they are and support them as best as we can. It is your right, privilege, responsibility and obligation to make decisions that are in your child’s best interest. If you are researching and implementing therapies, treatments and other interventions that you believe will be beneficial to your child and will help them to lead a productive, meaningful and fulfilling life with the greatest degree of dignity and independence possible, then you are doing the right thing. I implore you to avoid feeling compelled to choose between accepting your child and treating your child. You don’t have to; you don’t need to; and you shouldn’t. Rather than choose sides, choose to accept your child for who he or she is and to help him or her reach their full potential. Michelle McFarland-McDaniels is the mom of two beautiful preteen girls who have autism. She is also a wife, writer, blogger and teacher. Michelle publishes the Autism Assistance Resources and Information blog. She is also the publisher of Funding Autism Treatment and College Resources for Students with Autism.

Wednesday, October 29, 2008

Hey Bully, you Suck!

Nothing hurts more than watching your child be hurt and ostracized time and time again by other kids. Mean kids.. Suck! The neighbor kid used to jump our fence and play with my son's yard toys (swingset and sandbox). It would be one thing if he was coming over to play with my son, but he wasn't. He never had anything nice to say about him or to him, for that matter. He'd just make comments and say "He's wierd", "What's wrong with him", "I don't like him". I believed for a long time this was just because he was young (about 5 or 6 at the time) and just didn't know any better. Then, I found out he was in an inclusive classroom and around autistic kids all the time. I thought, dear god - please tell me he is not like this with the kids at school. And if he is, please let a teacher guide him. But it just kept happening. It became clear, he was just going to continue talking about my son in a rude manner right in front of him as if my son didn't even exist. Hey kid, he might not talk a lot, but he heard every word that you said. It made me boil inside. I had enough! I got off my wimpy butt and I talked to his parents. His mother was somewhat apologetic and said she would talk to him. And still, he was mean. He would climb our fence any time we were outside (and sometimes when we weren't outside) and play in our yard. This drove me bonkers (for liability reasons and also just out of a plain lack of respect). Finally, one day when he was half over our fence headed into our yard I told him: "If you come in our yard and play with Alex's toys, you need to be nice to Alex and not rude.". The next day his parents asked me why I yelled at their son. I told them exactly what I said, and they couldn't argue with it. Two years later, every time we go outside in our yard this kid still does the same kind of stuff. And, because of it we don't play in our own yard nearly as much as we should. How sad is it that my own kids can't enjoy playing in their own yard, with their own toys? We were recently at a birthday party and a kid called my son "stupid" over and over and over again because of something he did that was completely innocent to him, and a part of his Autism. I've come to realize that my son has a target on his back, Autism. Pick on me. Easy Target. A sacrificial lamb. and it sucks! Here's what I want to know: Is your autistic child the prey of bullies and on the receiving end of teasing by other kids? How do you handle this? I'd love any pointers because it is killing me to witness this happen to my kid time and time and time again. Just stop being mean to my kid, ok. It is Killing me! Hi, I'm hellokittiemama and I'm a mother of 2 very special children, living at the Jersey Shore. You can find me blogging my mad life with an autistic genius and a neurotypical diva, the gluten & casein free diet, vaccination choice, and more... over at The Bon Bon Gazette - because you know that stay at home moms really do sit around all day watching soaps and eating bon-bons. Got Bon Bons?

Saturday, October 25, 2008

I suppose the time has come

J is 7 now and in the 2nd grade, he has Autism. This little "blob" is a portion from my regular blog. I decided to post it over in here in hopes that I might get some good ideas or insight how others have handled this. Thanks in advance. The bridge I need to start walking on has got me SKEERED!! ********** J, is J. My joyous J. It's time to have the Autism talk, it's time to name it. It's not like he doesn't KNOW (duh). He has a para with him all day. He is has special services. He is getting teased. We knew it was coming, I thought I was prepared. I was not. It took me off guard. Can you ever really be prepared for that? I got to see it first hand on the field trip. Little bastards did it in front of me. Ballsy kids don't you think? Did J realize what was going on? I don't think so, but I'm not sure. What he did realize is that he was trying to be included in the play but was not being included and I'm sure he could not figure out why. Painful on levels I will never be able to express. When I addressed the issue in the parent teacher conference his teacher flipped her lid. Why didn't I come to her right away? Why? I suppose I needed to process it. I needed to figure out how I wanted to handle it. I want peer education, sensitivity training. Not in Autism, in kindness. We are ALL different. Thankfully, I am being supported. It has also given me the push to step onto the bridge I haven't wanted to walk. It's time for the talk. Somehow life has a way of making you put one foot in front of the other if you want to or not. ************** I know there are books out there that I am looking into. What I'm really after are personal stories, experience from the frontlines! My name is Becky, mom to J who was diagnosed at age 2 with Autism. I get through one day at a time the only way I know how, by putting one foot in front of the other.

Thursday, October 2, 2008

MY FIRST POST - Autism and Education

Some days you feel as though you are winning. Other days it is as though you’re being bombarded from every angle and you just cant do anything right. I’m on the phone to a mum informing her we have had some problems with her son kicking another student. I like to get in early and pre-empt the return call, as I know mum will be on the phone as soon as her son gets home and tells her the details. Mum understands the situation and I book her in for an interview tomorrow morning. We have come a long way together. From the days of school refusal because a student in his class didn’t share the same opinion he had on a computer game. To refusing to eat anything at school because the other kids called him “cheese disease”. I’m relatively new to the world of Autism and Asperger. When I was at University they prepared you by sending you out to a Special School Unit to get some hands on experience. They had you read scholarly article after article, written by boffins squirreled away in universities, on ways of managing students with Autism. I’m sure I wrote over 30 000 words outlining how I would meet the students needs, all backed up with reference to the latest developments and theories. Something you quickly learn when you meet a child who has Autism is that they are individuals. Generalisations go out the window with many of the theories and interventions. I have come across some students who are happy to shut themselves off from everything. At lunchtime they escape, with their blazer over their head, in a book or a hand held computer game. Whilst others want to be out on the football field or hanging around the staff room talking to people. Some are very self absorbed in class and are reluctant to share. Whilst others, accidentally touch on a topic of interest and they could talk everyone's ears off. The common factor amongst them all is their social interactions, or difficulty with. If you have a child on the AS spectrum and you’re reading this then you are all too familiar that children with Asperger and to a varying degree Autism are very self- absorbed. Everything is about them, to the vexation of their peers. I find it difficult to actually define my job title at times as I do so many different things. I am Head of Year Eight and Nine and I teach History. I help run our learning support department and assist the school’s Special Education Needs Coordinator. Basically I’m the go between home and the teacher. Being caught in the middle is like acting out the fable about the man with his son and donkey, going to the market. You can’t keep everyone happy. A line from a parent I spoke to last week sums up the issue “I am all for children with Autism coming to the school, but where do you draw the line when it starts to impact on our kids. How many exceptions are our children supposed to make”? This is like saying "I am racially tolerant but id hate for an ethnic family to move into my neighbourhood". Start to read through the stories i post on my blog and you soon get a picture of the parents im talking about. Something that still stumps me when dealing with Autistic students is that nothing is ever straight forward. The most notable case of late is of a student in Year Nine who has Asperger. I made reference to him in my opening paragraph. “Cheese Disease”, the name kids called him last year, and the reason he didn’t want to go to school. I was appalled at this and jumped on the students straight away. Later I hear that they called Andy this because he was bragging about the fact that he could eat his packed lunch of cheese sandwiches instead of the compulsory school dinners, which the students hate. I find that Students with Autism are often coupled with other disorders, the most common being Obsessive Compulsive Disorder (OCD). In Andy’s case he will only eat cheese, Jam filled biscuits and potatoe smiley faces (of a particular brand, mum has to keep old packets in case the packaging changes). This plays havoc with his health. When I tried to explain to the Head of the Kitchen why he wasn’t having school dinners, he wasn’t having it, saying, “well if I was his parents I’d just say eat it or have nothing”. There is no arguing with these people who have such a shallow insight. I didn’t bother to tell him that his mum had tried this and the result was Andy being admitted to hospital after not eating for three days. Now back to the issue of the complaining parent. Andy had been given two pet rats for his birthday and he had taken photos of them in to show his classmates. Andy persists with showing the pictures to everyone whether they want to see them or not. The next day I get a phone call from Andy’s mum saying Andy is refusing to come to school. I have her bring Andy in and she tells me the kids have been teasing him. They said that they didn’t like his rats. They said that he looked like his rats. They said that rats are vermin, so Andy must be vermin. I’m actually surprised the Year Nines know the word vermin but this is what Andy’s mum says. I attempt to get to the bottom of the story as I’m shocked to hear that bullying had taken place. I’m more shocked at the kids saying these things. As thankfully, bullying is quite rare at the school. I take one of the students from class and question him about the comments. He freely admits saying those things to Andy. This makes me angry. I begin to question why. It emerges that Andy constantly bragged about the rats and at every moment he had the picture out showing people. When someone said the rats were vermin this only fuelled the bragging. When someone said, “put the photo away I don’t like rats”, this only made him get the photo out more. Eventually the comments had come from pure frustration. Now here is my problem. The names were quite hurtful and did constitute bullying. But at the same time they had come as a response to the behaviour of Andy. I called the parents of the student’s at the centre of the bullying accusation and I was met with the response. “My son has an aversion towards rats so I can defend his actions”. I could also see the parents and students’ point of view. A Year Nine student hasn’t developed the social decorum to hold back on insults when faced with frustration. Their response to the bragging was to reply with an insult. For Andy this is confusing as he doesn’t see his behaviour as bragging and can’t understand the response the other students have to something he sees as deeply interesting. So here develops another problem. None of the other students want to be around Andy because he is annoying and if they say anything to him about how annoying he is they will get into trouble. Compounding this Andy knows this also. So he does not want to tell on anyone even if he thinks they are bullying. This is just one incident this year with one student. The school I work in is in the Independent sector and draws students who would benefit from a smaller setting. Over the past two years our clientele with additional needs has grown exponentially. 90% of the students have some form of learning difficulty and approximately 20% are statemented. For those unfamiliar with the U.K. system, Statementing is a process of identifying need’s and provides funding based on that need, so the students can attend mainstream schools. As you can imagine the people who hold the purse strings and give statements are tight and many parents especially the ones that are not well educated or familiar with the system miss out. This is a whole other issue and I wont get into it at this stage. In the U.K the fazing out of special schools has meant that SEN students are integrated and have access to the same education and opportunities as all children. Most schools have a special education coordinator and a team of classroom assistants. To give you a scale of the support we have 35 members of teaching staff and 26 learning support assistants. Many old teachers here despair at the influx of SEN students we take in, but looking at the successes we have it can’t be denied that the small setting with adequate support is the way to get the best out of these kids. I look back over my post now before publishing and i hope it does not offend. I hope parents can see the dilemma when faced with integration. My next post here will be about a boy I'm trying to help who says inappropriate comments all the time. Help with this one will be much appreciated. so stay tuned. Matt writes a regular blog of his own about his teaching at Trials In The Life of a Teacher. Feel free to make comments and offer him advice. On the same hand if you need advice on education and Autism feel free to drop him a line.

Monday, September 22, 2008

Saying It Out Loud

I'm gonna do what a lot of people would never do – I'm going to be honest with my actual thoughts and not sugar coat it and say it out loud. Autism sucks. Autism sucks and I wish my kids didn't have it. Autism sucks and it's not fair; to them or to me. Autism sucks and so does the ignorant attitude of people who make unthinking idiotic comments. These are all the 'sayable' things. The “Unsayable” things are harsh. Bitter, negative, unfriendly. It'll probably surprise most of the people who know me. I don't say these things out loud. People are always telling me how funny I am, what a good sense of humor I have, what a great handle I have on it all. It must be my background in role-playing games – it makes me a good actor. My current character is a super mom who is a super fighter for her kids and autism advocate, who is both mom & dad, not to mention teacher and a host of all those other things. Let me rip up the character sheet for a moment and let the harsh truth seep in... Autism sucks. It is not a gift, a challenge to be overcome at the end of the road – it is a devastation to every parent who ever heard the diagnosis, and is lifelong, unless you're one of the few who get lucky with the 'cure of the day', whether it be Secretin, ABA, Music Therapy, Hyperbaric Oxygen, GFCF diet, or the many other cures that come and go. I'm not saying these things don't help some kids – they do, and I've seen good things happen for some, but I've never personally met a child who has been completely 'recovered'; only heard of them in the news and over the internet. I've tried them all, and my kids weren't the 'lucky' ones. With every failure, one more drop of hope leaves the glass. All your plans and dreams for your child disappear. It is not simply a 'trip to Holland' that landed in China, or whatever the damn metaphor is. Most of the time it is a trip straight to Hell. Sometimes I want to trade my kids in for typical ones. Many times I wish I could go back in time and do it all again and yes – change things. Most of the time I just want to quit. I feel jealous of my friends that have kids that are 'normal', or at least more typical than mine. I feel jealous of those that have husbands and family who help them. I feel jealous that if I want to tear my hair out and scream and take off, the most I can do is lock myself in the bathroom with the kids pounding on the door. I wish I would have married someone with stronger character. I feel envious of the scum of an ex-husband who took off 2 months after the boys were diagnosed, because he's never had to deal with a day of autism. Never had to deal with the Regional Center, the school districts, the various therapies, etc. Never had to use respite hours just to get things done (people actually use respite for respite?) Yes, respite is used to get things done. I learned when the boys were little that many environments were so overstimulating, they just couldn't handle it. Many were the times I walked out of Wal Mart or some other place with a screaming child under each arm, shouting out, “I'm not kidnapping them, they're autistic!”. Now they're 12, and I can't carry one of them, let alone both, so a lot of times, we just don't go anywhere. I'm tired of the snide comments, never to my face, but as I'm walking out with the screamer, the ones that comment, “Some people just don't know how to discipline their kids!”. Once I actually answered the fool by saying, “Since you're such an expert on childcare, perhaps you'd volunteer to babysit this Saturday night?” Not to mention the time I shouted back, “They're autistic – what's your excuse?” I'm envious of those who can just have a babysitter, instead of search for a caretaker/babysitter/crisis interventionist who can handle a 12 year old autistic boy's temper tantrum. I wish I had a child who I could take to a 'natural' dentist. Now that the doctor prescribed Atavan before dental visits, it only takes 2 people to hold him down so the dentist can look in his mouth – it used to take 4 people. I don't have a choice – if they have cavities, they have to use anesthesia. Hell, I have to bring a helper when we go to the doctor, because Mikey will throw himself on the floor and refuse to move, and he's too big for me to pick up. I want a child who has interests, not fixations. The higher functioning one, when he collects things, has to have every single thing in the series, or he loses it. As collecting a complete set of anything is prohibitively expensive, I discourage any type of collecting that comes along. I have not told my son about Bakugan, that new card/toy game. The thought of a whole new series to collect and the issues revolving around not having a certain item in it makes me very afraid. Speaking of fixations, I wish my other child wouldn't scream for hours when we can't find a certain book, toy, shirt, etc. And why is it that the one he wants is never the one I just happen to have seen, but one I haven't actually seen in months? The worst is when he asks for a video or book that I got rid of years ago, before I realized how bad the fixation issue was. Now I simply buy lots of big bins, and store stuff in the garage. To that end, I miss being able to get rid of stuff for good. I miss the days when I could open the windows in my house instead of having padlocks on them to keep my eloping son inside and safe. I miss opening the front door in the morning to cool off the house. I wish I could leave my son outside for the few minutes I need to use the bathroom, instead of dragging him inside with me and locking the house, just in case he decides to hop the fence and run onto the freeway like he did previously. I also miss the days when I didn't have to have locks on the kitchen cabinets to keep my son from gorging till he gets sick. I accidentally left the cream cheese container on the counter this morning while starting a load of wash, and by the time I got back, the container had been licked clean. I'm jealous of those who get to use their college degrees. I have a Masters Degree, but instead, I'm my children's caretaker, earning minimum wage through IHSS, because holding a real job where you get to be with grown ups doesn't work when you have no one else who is willing to take care of your kids. There's just not enough sick days and family leave time – I tried. I'm envious of people who get to be around other grown ups on a regular basis. I'm jealous of people who can earn enough to buy a home. We will be renters forever, as the minimum wage won't let us qualify, but also because of the fact that IHSS is constantly in jeopardy of being cut from the state budget makes my job an unstable one as well. Oh, and IHSS won't let you contribute into social security, so for the last few years, in terms of chalking up working hours for social security, I technically have been NOT WORKING. Yeah. And so much for having a savings account, as if I keep one, the boys won't get their SSI. I will never be able to retire. I want to smack the fools who always tell me I must be doubly blessed, or that God doesn't give you any more than you can handle. I want to rip out their intestines and shout, “Handle this!” Same goes for the people who tell me how I should be grateful it's not worse than it is, or that the boys aren't both as bad as the lower functioning one. Side note – these people have NEVER volunteered to babysit my kids. I want to be able to take a shower when it's convenient for me, not have to sneak it in before the kids get up or after they go to bed or wait till I have respite help, because the last time I tried to shower when they were awake, I came out to the kitchen with all the eggs cracked on the floor and Mikey singing about Humpty Dumpty. I want to be able to stay up late again, and not crash at 8:30 pm, just because the kids went to bed at 8:00, and if I don't follow, I may never get sleep, because their sleep patterns are so unpredictable. I'm envious of anyone who can sleep through an entire night, without waking up after 3 or 4 hours, thinking of all the stress and horrors and the worst – what the future might hold for my kids. I'm jealous of my friends who can sleep in and tell their kids to be quiet in the morning, and the kids actually listen. I want to be able to write like this on a regular basis, but I just don't have that kind of solid alone-time on the computer (I've been writing this for months – started it right after Tina told me about this new blog). For that matter, I'm envious of all those people who have time to have their own blogs. Hell, I'm envious of those that have enough time to read other people's blogs. Don't get me wrong – there are good things; lots of things I love about my special children, but many people write about the good. I'm here to speak the unspeakable parts. I'm here to do the job nobody else wants to do, or has the guts to do. I'm the bad guy all the time in my fight – I'm the super bitch to the school district, regional center, and any other agency who is supposed to provide appropriate services for my child but doesn't, whether it be from budget or indifference. I don't care if these people like me, I don't care about establishing a 'relationship' with them – I just want them to do their frigging job – the one they get paid for, yet the one I end up doing for free. I don't want to be jealous, envious, bitter, angry, tired, hurt, exhausted, alone, ungrateful – but I am. I wish I was a better person, like the “Super Mom” character I portray every day, but I'm not – at least, not under the surface. If these kinds of thoughts make me a horrible person, then so be it – but at least I'm real. If I've learned anything from my ordeal, its that I can't afford to delude myself about anything. When you start lying to yourself, that's when you really get sucked under, and that's the time when the kids really suffer, and why would I be going through all this Hell if I didn't completely and utterly love my children despite it all? But just because I'd go through Hell and back for my kids doesn't mean I have to enjoy the trip. Bobbie is the mother of twin boys with autism, one high-functioning and one lower-functioning. She doesn't have time to blog, but you can follow her on twitter: @Bobbie42

Sunday, September 21, 2008

A Spoonful of Sunshine for Parents of Children Who Have Autism

As the mom of two children who have autism, one of the things that causes me the most distress is the way some people react to our children. People who face extraordinary challenges should be treated with extraordinary compassion. Unfortunately, sometimes those who face the greatest of challenges are treated with contempt rather than compassion. For this reason, I have a profound appreciation for those all too rare occasions when people rise up en masse to offer support to a person who truly could use it. The following video is example of this type of behavior. For me, it is a spoonful of sunshine to top off a steaming mug of cocoa. High praise to the wonderful people at Fenway Park who opened up their hearts to help a young man with autism sing our national anthem on Disability Awareness Day. To other parents of children who have autism: I hope this video fills you with joy and restores your faith in the human capacity for kindness as it did for me. Michelle McFarland-McDaniels is the mom of two beautiful preteen girls who have autism. She is also a wife, writer, blogger and teacher. Michelle publishes the Autism Assistance Resources and Information blog. She is also the publisher of Funding Autism Treatment and College Resources for Students with Autism.

A Day in the Life on the Spectrum

Most of the time I have no idea why my daughters start a tantrum. It is usually only in hind sight, I can hypothesize what led up to the tantrum although, I never know accurately why or what instigated the revolting reactions known as The Tantrum. Before I go on, let me clear up what I am talking about when I say tantrum. Because, a lot of kids have tantrums. They usually throw them when they didn't get their way or maybe when they didn't have enough sleep or are hungry. And, to a stranger, that is what our daughters' tantrums might seem like at the moment. But please, let me elaborate >>>

Thursday, September 4, 2008


Somewhere, there is a mom who has a child with Autism. This mom could be your cousin or niece, a neighbor, lady at church or in front of you at the grocery store. You might run in to her at a soccer game or at a new mom's play group in the neighborhood. Her child may be able to speak and read and write and look perfectly normal most of the time. But there may be times when you notice the quirks. You may notice that the child doesn't engage and is always running off, covering her ears when a garbage truck belches by then throws a tantrum like you have never seen before. You may wonder if the mom knows that her child has Autism. You may want to reach out to her or her child. Then do. Ask her questions. Accept her and her child just the way they are. She is just trying to navigate life like you are and she needs friends who accept her. Be patient. God has blessed her with her child. God will bless you when you reach out to them. Learn more about the Life of a Juggernaut... It's all about taking two steps forward and ten steps backward, but moving onward and upward one day at a time. Read more about the legacy of the Crazy Jugs, please visit today's posting >>>

Wednesday, September 3, 2008

Don't Call Them That!

When is a Word not just a Word?

Have you said it? In a fit of pique? Or frustration? In just normal conversation? Have you referred to your children with the "A Word?" Does it define who they are at that particular moment? Dan Olmsted, over at Age of Autism has been ruffling feathers because he believes we need to abolish the use of the word, "autistic." He is on the right track.

I have two children, as you know. They have autism. They are not autistic. Why do I differentiate it in my head? Because autism is part of who they are. It does not define them. They are more than just their disorder or disability or whatever we are calling it this week. I prefer to just call them my children. Who have autism. Though I am not crazy about the puzzle analogy, it fits here. Not because autism is a puzzle, but because autism is a piece of the puzzle.

Dan believes that the word "autistic" is similar in connotation to "retard." He's not far off. It is akin to talking about the "Short Bus", (a slang term for the bus that transports special education students by those who wish to disparage it). It is a negative term, guffawed over lunch by kids who don't understand differences.

Autistic is a very limiting word. It defines the person's limitations. Sometimes, the reputation of a word is doesn't matter what the actual definition is. No one wants to be called ignorant. And yet, the definition in itself is not offensive. Autistic simply means "of or pertaining to autism." But the gestalt of the word means so much more. Words can be used to educate, but is that necessary all of the time? Sometimes, is it ok to just be?

I have chosen not to refer to my children as autistic. They may change that at any point. It is completely up to them how they will refer to themselves. I have talked to my son about this, and, with no coaching from me, he laughed and said exactly what I had said,

"Why would I want to be known by only one word? I am so much more than autistic!"
(emphasis was his)

I understand there is a movement in the adult world of autism to embrace the word. Take it back, if you will. It seems to me like the N word. Young black men reclaimed the word, and the power that went with it, as their own. But it's a word that is acceptable within the context of their community. (One could argue about whether or not it is an appropriate word for any group to use...) Regardless, it doesn't cross color lines.

That is how I see Autistic. It is a charged word. An in-your-face word. A "we're here, get used to it", word. And I can't make my children part of a political movement. It is time for them to just be children. Without limits.

T, who imagines I've started something

How about you? What do you think about autism vs. autistic?

Technorati: , ,
photo by Carey Tilden T. is a writer, wife and mother of three children, two who have high-functioning autism. 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, a contributing writer at The OC Register and her own site, Send Chocolate reflects her passion for her children and autism.

Monday, August 11, 2008

Go ahead, take advantage of me - everyone else does.

Hi, I'm hellokittiemama and you can take advantage of me. I'm the mother of 2 children - one with Autism, and therefore that means I have nothing better to do than watch everyone elses children for hours on end without reciprocation. I know that childcare and babysitting options for an Autistic child are few and far between. Why do you think I am home every day in time for the bus and that I do not work outside of my home? It isn't because we are dripping in money and thriving on a single income... but don't I wish? The truth is that it is because I have no place for my son to go after school or when the nurse calls me at 8:30am to tell me that he threw up or had a bathroom incident and needs to be picked up. It is my obligation to my family and to my children, and I don't regret the fact that I am at-home though I wish it were under very different circumstances. You see, my child has Autism so instead of being out and about I have to be home for the daily bus drop-off. I'll be home, so what does it matter if I have another child or two to chase after? After all, I have a child with Autism already so I'm used to it, and I can watch your child with Autism also and their siblings - heck, even one or two of their friends too- even if it completely disrupts my own child(ren)'s routine(s). Don't worry, they'll be fed dinner also - only the best organic fruits and veggies, overpriced 'designer' chicken nuggets & juice. Eat me out of house and home, go right ahead. Even if, we had made family plans and I let you know about them - so please be back by 5pm - you can still show up at 8pm and everything will be 'ok'. And the next time you ask me because you need a favor - I won't say 'no', because I can't. When in the past 5 or so years since my 7 1/2 year old son got awarded his very first "A" - that would be Autism, did I lose the ability to stand up for myself? I spend every day standing up and fighting for my son that my own defenses have become annihilated. Hi, I'm hellokittiemama and I'm a mother of 2 very special children, living at the Jersey Shore. You can find me blogging my mad life, motherhood, autism, diva siblings, and the gluten & casein free diet over at The Bon Bon Gazette - because you know that stay at home moms really do sit around all day watching soaps and eating bon-bons.

Friday, August 8, 2008

Why I Don't Open the Can....

As an advocate parent, I have been told more than once that I don't show my vulnerabilities. I've also been told that I seem to 'have it all together' by some moms who felt like they were holding on by their fingertips. It makes me sad when I hear that because I so clearly don't have it all together, and I wouldn't want anyone to think I'm trying to one-up them on this struggle we're all in on together. I am pretty organized (Type A) and structured (anal-retentive) and I do believe those qualities are good in the management and parenting of a special needs child. I have come to find over the last few years what works for me and my family, and I use those discoveries the best I can. But why am I not vulnerable? Well, that answer has come to me in small little stops and starts lately.... Like when I was standing in the kitchen of one of my favorite girlfriends in the world and burst into tears looking at her kids' drawings. Or when I've sat on the beach on various occasions this summer watching families have the time of their lives while my child is back at the house....unwilling to even come close to the shore. Or today......the ultimate in vulnerability. I was cleaning through things in my child's room as I make room for his big-boy bed and had to go through his keep-sake box. It has everything right from the very beginning: ultrasound pics, hospital bracelet, baby blankets, teethers, bottle, cups, birthday cards, you get the idea...... I went through it pretty quickly because I knew if I didn't I would get really sad. I was only transferring all of it to a much bigger sterlite box anyway.....none of it was going anywhere. So I sifted. Moved it. No attachment. No vigor. No tears. Until I came across one little thing. The sports strap from my child's first pair of glasses. My little boy has been wearing glasses for lazy eye/farsightedness since he was 19 months old. This strap, as tiny as it was, is what I always seem to symbolize with the beginning of knowing there was something different with my kid. And so I looked at it. Held it. Cried over it. Actually cried for a pretty good while as I thought about the baby I had.....the baby I still have......the child he has become......will never be......all of it. When I was done I put the rest of the memorabilia away but kept out the sport strap and stashed it in my own nightstand. So maybe when I feel like I need to have that moment of vulnerability I'll go there and have that. I'm not trying to be stronger than you....this is just the way I need to handle it. I hope the other moms, the ones who think I have it 'so together' will understand. I am The Chick.....I'm a SAHM living Down South where I write about my life.....marriage, friends, music, activism, fads, oh.....and the life of a mom with a 6 year-old boy with autism. Stop by my farm for more!

Sunday, July 27, 2008

Sick of It

We have been to 2 parties this weekend. 1 block party and 1 birthday party. We stayed for about 3 hours, because that is about all I or Bacon can handle. He played and ate and had a good time, and I was able to have some semi normal conversations with other parents. 
The coming home part is always the part that stinks. It is the part that ends with me hauling his 45 pound body home while he is screaming and flailing, then carrying him to his room to get him to cool off. It is the part that happens before Mr. T comes home. It is the part that has gotten so bad, I am physically ill. It is so bad that I really don't want to go anywhere with him anymore. 
I am sick of the weird looks. I am sick of the questions. I am just sick of it all. I am tired of fighting with a child who only wants to scream at me when he doesn't get his way. I am tired of fighting with a child who doesn't understand that it just isn't that way all the time. I am tired of throwing up from it and I am tired of feeling guilty for it. 
What advice do you all have? What techniques work for your Aspie? What books have helped you cope with this? What support groups have you joined? Do you use counseling? What works? Mr. T doesn't get it, and he isn't here 24/7/365 so he couldn't possibly get it. Those of you moms who are in it do get it. Help please. 
*My name is  Mrs. Tantrum. I am a 31 year old mom to a 4 year old son who was recently diagnosed with Asperger's. I blog almost every day at Momma's Tantrum about our life with Asperger's, Coffee, the crazy antics here, and more. I do have a fierce potty mouth so if you are easily offended, just cover your eyes and hum loudly!*

Thursday, July 24, 2008

On the Michael Savage Controversy

Most of us know what Michael Savage said about autism a few days ago. I am not going to recap. I am also not going to blog my reaction to it, because it is, predictably unfavorable. But men like Savage expect an unfavorable reaction. Press, good or bad, is what drives ratings. So, I would like to encourage you:

Don't Feed the Trolls. Even the highly-paid, syndicated radio ones.

Do you remember back in the day when posters would pop into chat rooms or BBS systems, say the most inane things and try to start a fight? Remember what we used to say? Don't feed the trolls. If they don't eat, they leave. Given no one who will rise to their bait, they have to go elsewhwere.

It's the same with Michael Savage. What he said was savage. And he will say worse, he always does. But don't fight him.

Instead, target his advertisers. Get him off the air. Without his radio platform, he will just be another loudmouth shooting his mouth off about what he doesn't understand. But, then, so is a quarter of America. The difference is, they don't have a forum in which to do it.

So I say again. Don't talk about it. Don't blog it, just act. Boycott the advertisers and get rid of this man once and for all.

This list came from here, so make sure go and give him love for compiling this.

A list of current advertisers and their websites

Digital Media Inc., U.S.A.: Nevada State Corporate Network, Inc.: Roger Schlesinger, the Mortgage Minute Guy: Effectur: Geico: Home Depot: Wachovia: Gold Bond: FreshStart America: Heritage Foundation: Breakpoint: [Link removed; see "Breakpoint Responds Re: Michael Savage] Debt Consultants of America (snail mail and phone number listings): DirectBuy: [See " Responds Re: Michael Savage"] WebEx:

T, who says, house elves are ok to feed

T. is a writer, wife and mother of three children, two who have high-functioning autism. 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 and her own site, Send Chocolate reflects her passion for her children and autism.

Tuesday, July 15, 2008

Stupid test scores

Warning! Major Vent! So Dino Boy just finished first grade. He had to take a test. The NJ Pass...I hate tests. Well, I don't hate tests, I liked school. I loved college and learning and tests- well, cause I was pretty good at telling the teacher what they wanted to hear- I got A's and even became a teacher. But now, I hate tests. I remember, vaguely, the week that Dino Boy had to take this test. He was nervous, scared even. But then they decided not to give him the test with the class. He got to take it on random days with the school counselor. He was still nervous of course but he didn't know when he was gonna take the test so he couldn't panic ahead of time. I thought this would help him. I didn't focus on the test. Just try, hell, just try to sit. That is all I care about. Please Dino Boy be happy, don't panic, mommy doesn't care what the test says, I know you are brilliant and no one in the world knows more about dinosaurs than you, just, please, BREATHE. And that is what I am telling myself now. Breathe. I am used to high test scores. I got them. My ADHD brother who flunked out of every class still ACED every standardized test that was put in front of him and to be frank he (Uncle Frog) is the smartest person I know. So Dino Boys scores? He did better in math than language arts. I knew that. He hates to read. He can't scan, his sight words are just gone, I try to review and get him to read but making him sit at the table is more than half the battle. ( We are working on this and hope exists) But still on the NJ pass overall scale of 1,2,3, he got a 1 Basic. Minimal skills... some areas better than others but none were really, well, passing. Language arts. worse. Basic again, but this times in ways that I really don't get. I mean, he can recite a story to me tell me details days later. But he couldn't recite for a test? Was is that boring? Could he not fill in the bubble? He loves to be read to, he may not sit for it but it all gets in there....what happened? I don't know whether to cry or throw the f*c>ing test out the f*c>ing window or say that Its ok, this was pre IEP, pre summer occupational therapy, pre my Asperger's book binge, pre internet support group. Next year he will have the same teacher(not yet sure if that is good or not) , an aide, speech, in school OT, maybe out of school OT too. Should I care? Does school just want to make you bang your head against a wall--hard? Thanks for Listening- Eile The rest of this rant continues on my blog. It goes more into fears that I am not yet sure that you all want to hear. So feel free to read the more rambling uncensored version over there. Going Down Laughing

Friday, July 11, 2008

Autism, Clay, and a Crap-Load of Metaphor on Parenting

I've noticed a lot of bloggers lately have been writing odes to their children as it seems that many of them have summer birthdays. Their words have been very sweet and have really spoken to me. In a world in which so many children are unwanted, abused and neglected it's always nice to see that there are many that are not only loved, but genuinely cherished. But I have to be honest....reading such pieces is always a little bittersweet for me. I can't help but notice and think about what they have and what I don't. I try not to dwell too much on what my child can't do and what his autism takes from him, but sometimes to avoid those things is to live in true denial. I have been in the position many times to speak to parents of children recently diagnosed with autism. I have also been in the position to offer support and counsel to parents who have coped with the disorder for some time. I am really in no way qualified to do either, but something about my listening skills and a background in the human services has lead me to these jobs. In those situations, many a person has heard me use the old "children are like clay" story. Go with me here.... When a new baby is born, he is a lump of clean and perfect, unused clay. As the potter or parent, you can turn that lovely clay into whatever you so choose. It could become something as lovely as a glazed vase or something as dirty and unremarkable as an ash tray. As parent/potter YOU will choose how to fashion this priceless clay. When you have a child with a disability, you also get clay. It often even looks as good as "typical" or "normal" clay. But when you start shaping it, you realize as its parent/potter that it's not so easy to spin. It requires much more work and a much more delicate hand. You will become frustrated with the clay and sometimes even get mad that you can't work it as well as the other potters. You will even wonder sometimes if your clay can be fashioned into a vase or an ash tray or will simply remain.....clay. You will walk out of your studio and see the other potters. They are all either thrilled with or disappointed by their really all depends on the day. Sometimes they will get mad at their clay when it's really them that aren't treating it and spinning it right. And sometimes they will get annoyed when their clay does something really silly like falling off the wheel. They'll berate the clay and make a huge deal out of a simple accident that can be easily remedied. And what of us potters of the "other" clay? The clay that won't spin? Won't seal? Won't slip? Has dents, pocks, discoloration, pockets, etc? What do we do with our non-performing clay? Well, we'll get mad at it. Cry over it. Keep spinning it. Keep telling it we know it can. Lose patience with it. Let another more experienced potter give it a try. Cry again. Have I beaten this clay metaphor to death? I used to like to spin.....sue me. My dedicated readers know that I don't talk a lot about Little Boy's autism. And I also don't try to use this blog for complaining, ranting or bellyaching. But I just had to use this chance to say something to all of you "normal" potters out there: take this clay you were given, and dammit, spin it right! You will never know how blessed/lucky/fortunate you were to have been given it. And when you see us other potters out there.....the ones with the "challenged" clay. Don't give us your sympathy. And don't give us your criticisms of advice. Just look at us and know that we're potters too. And like you, we're just trying to make a masterpiece. I am The Chick.....I'm a SAHM living Down South where I write about my life.....marriage, friends, music, activism, fads, oh.....and the life of a mom with a 6 year-old boy with autism. Stop by my farm for more!

Thursday, July 10, 2008

I Love You

Having an "Aspie" means that you come to know certain things. You learn quickly that they use the same phrases repetitively. It is part of that whole routine thing that helps to soothe them. I think it also is part of what some experts refer to as "scripted speech" - meaning that they hear this and then use it because they think that is how you are always supposed to talk. 
My Bacon uses "scripted speech" a LOT. Things are DEELICIOUS, and he always has a GREAT IDEA. Often THAT'S NOT SAFE, or NOT A GREAT IDEA. His newest (and my favorite) is What I was probably thinking is...
He does say "I love you" but only after you have told him that first. He gives hugs and kisses and "Eskimo kisses" (which he calls snuggles) at free will. He will gladly tell you that he misses you or missed you when you were gone. He is vibrant and wonderful with language, but still never just says "I love you momma."
I am okay with that. He is still little, and it is a hard concept to learn and grasp and get. Maybe he will never be the first to say it. That will be okay. As long as I always tell him, and he knows long after I am gone that he was my sun, moon, stars and everything and I loved him with every fiber of my body and soul. 
Then before he left to go to Crazy Aunt Ethel's on Monday he ran inside to give me a hug and a kiss, he threw his arms around my neck and whispered in my ear "I love you momma. I love you more than the sun and the moon and the stars." 
I cried when he left. Not because I was sad, but because finally my little man said the words that I thought that he would never say first, that he loves me. 
*My name is  Mrs. Tantrum. I am a 31 year old mom to a 4 year old son who was recently diagnosed with Asperger's. I blog almost every day at Momma's Tantrum about our life with Asperger's, Coffee, the crazy antics here, and more. I do have a fierce potty mouth so if you are easily offended, just cover your eyes and hum loudly!*

Wednesday, July 9, 2008

Camp Struggles

My eldest son is 7. He was diagnosed with Asperger's just last December, just on the cusp of his 7th birthday. We had known something was up for years but couldn't put our finger on what it was or how to cope. We bought books about ADD, ADHD, OCD, graphomotor dysfunction, even Autism and Asperger's but we didn't KNOW until we traveled 3 hours to a specialist, not covered by any insurances, who charged $500 to actually sit with our son and figure it all out. --and then a second $500 to help us figure out what to do with the information. But he was worth every penny. It was a relief to know the name of this thing that controlled our lives. The thing that had become so big that a question like "What accommodations do you make for your son?" had become unanswerable because...didn't everyone live like this? Joey got thrown out of no less than 3 preschools. He was "removed" from the private kindergarten that was supposed to be "WONDERFUL" after only 3 days. He was a "disruption" because he told the teacher that the year 2006 shouldn't have smiley faces in the zeros and then insisted that she remove them. He wouldn't stand on the 7 on the carpet because he was NOT 7 years old. And he loved to turn the air conditioner on and off because he loved to control the movement of the air. Taking him out of that school was that start of a great change in his life. Two willing teachers and an IEP later, my Dino Boy is doing fairly well in an inclusion classroom. I just wish that everyone could see the brilliance that exists in between random acts of eating things that are not food and his stimming habit of bouncing round the room stretching his fingers in all directions. So this was about Camp right? Dino boy and Little Man (see my other blog for that story) go to a wonderful YMCA camp. Little man loves it and Dino Boy went there for part of the summer last year too. So I was very surprised when after ONE WEEK they called me. "Ummm, Ms. Eile, We would just you to know that we are giving you warning that Dino Boy may not be able to stay at camp this summer." Now what? I,single working mother am...screwed. But we talked. Camp talked to me, I talked to ex husband. We spent the weekend talking to Dino Boy about staying with the group, not eating things that are not food, asking for help, telling people that you are frustrated instead of running into the woods, and Dino Boy got it. He really really did. And according to camp he does great, until about the time when there is 2 hours left in camp. He can't hold it in any longer. He struggles so hard to keep it together that on some days those last 2 hours cause him to overload.... And I don't know what to do about it. I KNOW KNOW KNOW that he is doing the best he can, He loves the camp SO much. We had parents night tonight and he just gushed about every activity. But I wish I could just give him a break. A place where he can lose it and still be ok, a place where he can run and play and plan his Jurassic Camp movie and just be loved. So next year...maybe I can find a special camp just for him and people like him...but is that the right choice? or should I just immerse him in "normal" teach him to swim like all the other fish? I don't have something catchy to end with...just an open question I guess. When you have a high function kid, what do you do? Should I constantly challenge him to move up or let him just coast during the summers? He gets so stressed. I just feel that its not fair but when he grows up he is going to need to deal with the outside world. Do I teach him to do that now...or wait just a bit?

Every Picture Tells a Story

The Hubby, Scamp and Spiff. My fellas.

This photo is one of many hundreds of photos taken over the course of a family trip. Can you spot which one of my children is Autistic? To an untrained eye, it is rather hard to tell. Both of my boys can be rather well behaved in public places, but then there are those times; the ones where Spiff starts flapping his arms or waving his bracelet around. These moments usually happen in more crowded spaces. Not long after this photo was taken, we boarded a Green Line T train in Boston full of people and he began to flap his hands wildly to calm himself in that situation. While it attracted many stares and puzzled looks, it helped him relax. It's incredibly important for him to be comfortable in any situation, and he has learned how to calm himself in just about any kind. It's been a long road, and we're still on it.

The other day I was going through our family photos as I was transferring them from one computer to another. As I glanced at photo after photo of my kids, I noticed there were so many of my son in a group or family photo where he doesn't look at the camera, or is sitting just a touch away from the rest of us. Or both in the same photo. There were more than I realized. We chalk it up to one of his many quirks, and we are fine with this one and all the others. Other people might look at these photos or us when we take the photos and think he is being rude; but he is not. He might look uncomfortable and like he doesn't want to be a part of the "moment", but deep down inside he does. He really does.

He's just being him. Beautiful, beautiful Spiff.

Monday, July 7, 2008


I know I titled this post 8:30 pm, but the story really starts around 6:30pm--every night. That is the time when I, single mommy extraordinare, starts the bedtime routine for my 4 year old and 7 year old boys. First, I announce that this is the LAST tv show of the night. Dinner is over, dessert has been eaten and we need to agree to the last show. Sounds easy right? Sometimes its blissful. Little Brother says "I want to watch (insert Backyardigans, Sponge Bob or Crashbox here) and Big Brother happily agrees...other nights, not so much. Fighting ensues mom breaks up said fighting through compromise, computer, distraction... or insert bad parenting decision here. Step two, 7pm - Bath time. Frankly, to be honest, I LOVE bath time. No TV. I have the kids hostage. They tell me about their day, we laugh, make jokes. Its great. EXCEPT when they are fighting about the water temperature, or who gets to sit by the water, or which one gets their hair washed first. I used to pick which child went through the water torture first, but they hated that. I decided to that I would let fate control this choice, so I started playing the number game "Pick a number between 1 and 10" and whoever was closest would get to pick if they were first or second. But I found that I would cheat! I would think of the number after they had guessed in an attempt to alternate children....this failed miserably. So tonight my wonderful, thoughtful older son, Big Brother (BB) just offered to go first! Mommy loves him so much, sometimes he is so giving and rational and well, just wonderful. Then story time- 7:30. Story time can also be wonderful. My boys are great. They think outside of the box. Today we read a Little Critter book about going to the museum and then they proceeded to design their museum, for your information the Planetarium will be upstairs...their is no other option according to BB. Then we sing songs- they make me dance and they improvise sounds in between the verses. 8pm Hugs, Kisses, Goodnight....or NOT Post bedtime activities BB- "Mother don't you know I stay up for HOURS!" and he is right, he does stay up for hours. First, with LB still awake, we go potty (again) get water (again) The scariest words I get to hear from BB- "Mother, You don't need to tuck me back in. I can do it myself" uh-oh TROUBLE So I check upstairs...and this is literally 3 minutes since I left the room. BB "Look, we are building a temple" and he is, complete with buildings, dinosaurs, dragons and other toys that have resided in the toy closet, untouched, for months. "Please don't take it down....Your not mad are you?" "No, not mad, just go to bed" Minutes go by, I hear doors creaking, cabinet doors slamming, I go back upstairs...BB says to LB "See, you made mother come back up" oh yeah, I have to mention this here. Where did this mother thing come from? I was Mom or mommy up until a few weeks ago- then Mother, Mother, Mother. I asked why and BB said- "Your my mother" Logical yes, but I wish I still got to be mommy. So where are we now...8:33 and things are quite...maybe.. Last night when I took out the garbage and 10pm I came back in to find a screaming BB asking where I had how long does he stay up? "Mother don't you know I stay up for HOURS!" So I am Eile, I have just started blogging here and at my new blog Going Down Laughing. I am a single mom with two boys, a 7 year old Aspie and a 4 year old child that thinks he knows everything. We laugh a lot in my house, and I hope that my writing gets funnier with time.

We Are Part of the Cool Crowd!

(but you can still sit by us at lunch) We have new jewelry in the sidebar! Just found out that All Top has a new autism page, so by all means, check it out! All Top Autism Keep writing you guys, it is getting noticed! And if you are reading and are thinking, "Oh I could never do that..." Yes, you can! (channelled Obama for a minute there) If you are a parent or caregiver who deals with autism you have a story and we want to hear it! Email me to be added as an author for this blog. T, who loves you all

An Open Letter to the Airline Industry from an Aspergian’s (Autistic Child) Mom,

Let me begin by saying my child is not the enemy. Please try not to treat him like one.

My child has the same rights and should be allowed to ride in a plane, your plane, just as the gentleman snoring loudly in seat 3B is right now. Yes, I understand that he’s screaming bloody murder right now. He’s frightened. The pressure in the cabin is affecting his sensibilities. The people talking loudly to each other; the sounds that the plane is making are affecting him. Please don’t keep stopping by and checking his seatbelt every 10 seconds. I can’t help but notice that you didn’t seem to care about the other screaming child in the back of the plane.

Oh? It’s a newborn? Well, can I ask why the double standard? How is it okay for that parent to escape scrutiny, yet you keep harassing me? My child should “know better”, you say? Hmmmmm. I don’t think you understand.

Allow me to explain. Also, allow me to clarify.

Just like that newborn, my son struggles to verbalize his discomfort in social situations. His understanding of this situation in his mind is identical to that newborn back there. I have taken the time and great effort to make sure we have things to make him as comfortable as possible for the duration of this trip, but even I can’t ultimately control his reactions. As his parent, I do my best, just as you strive to do, each day in your job. Sometimes I miss the mark. Trust me, it is definitely not intentional. I did not awaken this morning thinking “How can I piss off everyone my son comes in contact with?” I have much bigger fish to fry.

In the not so distant past, it was customary for a passenger when booking a flight to tell the person who booked the reservation what special needs they might have, if any. This needs to start making a comeback. I am more than happy to let the staff know our situation, and if necessary, things we can do as a team to make this trip as enjoyable for everyone. It may mean enduring some moments that are not so comfortable for a period of time, but the end result might turn out to be not so bad. The best part is you have an opportunity for a learning moment to take place. We can all stand to learn something, wouldn’t you agree?

The worst thing you can do is make me or my family feel like we have done something wrong or inconvenienced you in some way. On every flight (or just about) I’m certain that there is a screaming child or an obnoxiously drunk adult or that one person who can’t wait until the sign is turned off to move about the cabin. I don’t always see a police escort waiting for them at the airline terminal, so why single me out? It’s because autism is such a hot topic, isn’t it? Or, is it your lack of training and understanding of the situation? Please help me to understand.

My family is not your enemy. Please try not to treat us like one.

Lets’ try to work together to keep those skies as friendly as we can. I’m game if you are.

Sincerely, CrazedMommy

Shash and her family fly the not-so-friendly skies rather frequently. They have the miles to prove it. She 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. This is her first post here at Autism Sucks.

We're Still Married?!

"So what is the rate?" She inclined her head towards me. I swallowed, stalling because I didn't know. I knew it was high. I looked at her and said, "Not sure, but I know it is higher than the national average. That's just over 50% now." So I decided to come home and google up some actual figures. There is no question that raising a child with autism, even high-functioning autism, is a challenge. It is a challenge financially, emotionally, spiritually and attitudinally. It is an entire paradigm shift. Like living with a duck who wants grapes...all the time. It isn't hard to feel at your wits' end ..often. Many times J comes home and I just have nothing else to give. I am spent. Absolutely worn out, and not able to give to one more person. And who gets the short end of the stick? You guessed it: J does. And yet he rarely complains.

As I write this, he has sallied-forth on a mission of mercy. Yes, the kids are tucked into their beds, and he has gone to procure Starbucks mocha, the nectar of the gods. He knows foreplay. Or maybe he just knows how to keep me sane. Since life can

often be a war zone, and I, crawling over enemy lines without hesitation (okay, maybe there is a little hesitation) a medic on duty is necessary. That's where J comes in. I guess it works because we take care of each other. We get along well, and well, we don't really have to work at it. Which is good, because there isn't much time to work on much of anything in this house, not the way the littles behave. We can't take on anymore.

There is a reason we have cats. Cats are independent, don't mind if they aren't the center of attention and often prefer not to be. We don't have a dog, though I would love one, and maybe someday soon, we may take the plunge. But I don't have the time to devote to puppy training and walking and just being generally slobbered over and followed around. I get that enough. We would probably kill a fish, forgetting to feed it. And you don't want to see my yard. When we moved back home after the fire, we decided to do our own gardening. But me, in my infinite wisdom decided that we would do the Green Thing and not use poison on the lawn to kill the weeds. And, did I mention that I now use a rotary mower to save the environment? Unfortunately, it is now my lawn that needs salvation.

Lacking time, I haven't done the requisite internet search for nematodes and other magic organic fixes to protect my lawn from the weedie beasties. Consequently, my lawn, which of course, someone forgot to water, is now brown with green things bobbing in not quite a sea of crabgrass. We do manage to get it somewhat mowed, but it seems to be a losing battle. The flowerbeds are overgrown, and all good intentions to clear them and plant something gave way to a brochure left on our front stoop about code enforcement and happy neighbors. We don't know which one of the wonderful residents of our 'hood left it for us, but there it is.

And my answer? You try mowing the lawn when you have a 6 yr old in the middle of a screaming fit for who knows the reason (sometimes, there are no reasons) and a 9 yr old being defiant and refusing to do anything except repeat, "Can I have a cookie? Can I have a cookie? Can I have a cookie?" And this after being told, as I am wont to do: "Question asked and answered," ad nauseum. And amidst this, I will take time to mow the lawn? What planet does the anal neighbor with the perfect yard and the perfect teens (only they aren't because I see them on the corner) who mows his lawn and trims his plants nearly every day...what planet is he from?

So, there is little time left to work on things like marriages, or dinner reservations or breathing. So it is a very good thing that my marriage is usually so easy. We figure we survived a fire, when the house was completely smoked out, everything was destroyed and we had nothing but each other. We survived the insurance settlement and the rebuilding process and the redecorating and even the relocating. Autism after that? Cake.

In any case, I came home and found the figures. According to a few online sources, it is over 80%. Dr. Phil even pegged the rate at 86% if you can believe it. 86% of marriages amongst couples who have a child with autism end in divorce. So, since we have two children, does that make our rate higher? In fact, statistically, we aren't married at all! Yay, we are living in sin, and have been for almost 19 years! (Then why aren't we having more fun?)

TLC feels very lucky to still be married after all this crap. She has three children, two with high-functioning autism, she homeschools and is still mostly sane. She views autism as a growth process and the opportunity to connect parents for support as a passion. Read more of her misadventures at Send Chocolate. This blog is her gift to the Autism Community.

Saturday, July 5, 2008

Flailing On The Fourth

I am not a mom who takes this whole "Asperger's" thing lying down. I am not an advocate mom like some of the really great mom's I know. I need to get out there and do that. I just haven't been in the pool long enough to get in the deep end just yet. I am a mom however who does not tolerate any garbage when it comes to people dealing with my kid. 
The Fourth of July is one of my least favorite holidays. I know that you probably think that is all "UN-American" and horrible, so sue me. Seriously though, throughout my life it has proven to be crazy. If it was not spent in the ER for hives, pink eye, or some other freaky ailment that I managed to catch at a summer barbecue, something weird happened when we were out at some big fireworks display. (For example my springer spaniel ate an ENTIRE CHOCOLATE TEXAS SHEET CAKE in my grandmother's kitchen. When we got back to her house we thought that the dog was dead. She wasn't. She was in a sugar coma for three days.) 
With Bacon and his Asperger's the Fourth has been less than fun. When he was two he was so terrified he screamed for two weeks every time we went out side about the scary fireworks. It was SO MUCH FUN. Last year he had a great time with the other kids watching Mr. T and the other dads blow stuff up. This year sucked. There were way too many kids most of whom know that Bacon likes to watch the fireworks but doesn't like to touch them. Still these same kids kept pushing and pushing for him to touch them. 
Finally when the neighborhood's biggest pain in the butt (She is 12, she has two pet GOATS, and knocks on everyone's doors at 9pm looking for someone to play with.) was chasing after him with a sparkler and trying to grab him I lost it and yelled at her. 
"EMILY! Leave him alone. He is four, he told you he is afraid of the fireworks, and if you don't stop I am going to have to ask you to go home." 
She of course ran to her dad and cried like she was 4, and her dad gave me the stink eye.  I could have cared less. She is OLD ENOUGH to know better. He is old enough to know that she should not be chasing after a little kid with FIREWORKS, especially when that kid is freaking out. 
I am mostly frustrated because there is another boy that lives close to them that has Asperger's that they treat with kid gloves. Not that I want them to treat Bacon like that, but I also don't think that I should have to staple a sign to his forehead reading "PLEASE TREAT ME NICELY AS I AM NOT NEURO-TYPICAL" 
Was it not obvious from him freaking the hell out all not? Was it not obvious when he was running in circles and smacking himself in the head? Or do people think that is normal four year old behavior? It had me freaking the hell out, and I had taken two Xanax and drank some wine! 
How do you handle this? What do I do? I know I can't forever bully all of the nasty kids out there. (Although technically I didn't bully that little snot.) I just don't feel like I have the right answer or any control. So now as an adult the Fourth of July still sucks, but for a whole new reason, because I can't keep my son safe or under control. 
*My name is Faith Tantrum. I am a 31 year old mom to a 4 year old son who was recently diagnosed with Asperger's. I blog almost every day at Momma's Tantrum about our life with Asperger's, Coffee, the crazy antics here, and more. I do have a fierce potty mouth so if you are easily offended, just cover your eyes and hum loudly!*

Thursday, July 3, 2008

The only thing that you know for certain...

The only thing that you know for certain is uncertainty. I never know what each day is going to bring. I'm Becky. My son was diagnosed Autistic at age 2. I thought he had a speech delay. Imagine my surprise. I can't wait to bring my whole story to the table. Autism affects each and every one of us on such a core level. It effects our families and our lives. It changes the dynamics of everything we've ever known. Our hopes and dreams have to shift, that really is the bottom line, the bottom line that most people don't talk about. The bottom line that I want to talk about. When you are a little girl or boy you really don't think about what it will look like when you grow up and are raising a special needs child do you? I know I didn't! I do think we were given these children as a gift and they are precious souls. I am in the middle of a legal situation. The opposing legal team has found that they seem to think it beneficial to watch every move I make on the internet (with it being a public forum) so that they can possibly use my sons disability in the most shady way possible. Excuse me while I go vomit. It's a sad day for humanity. They have already submitted pages from my blog into the case. So with all that said I must wait this out with a patient mind and tongue before I share my whole story. I love statcounter by the way. In the interim please feel free to visit me over at *Self Induced Chaos*. After all is said and done I will be able to write without fear of saying something that could be held against me? The opposing legal team still managed to find whatever they found to use though. My friend said it best: Seriously Bec, I think you have a class action civil rights lawsuit here. And know why? Because our litigious society places health care (including mental health) in a freaking capitalistic system where you have to be a CONSUMER who can shop wisely – to the point that insurance companies have said they will fight, tooth and nail to keep from paying out damages, no matter how much integrity they have to lose, how many lives they have to f*ck around with in the process.

Wednesday, July 2, 2008

Question for Authors and Others

Friends, and prospective authors...I was thinking we could add a bit of a bio and a link to your blog at the end of your posts. That way, it gives you a bit of exposure. Let me know what you think.


Tuesday, July 1, 2008

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 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 in October.

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