Thursday, April 23, 2009

What's it like to have a "normal" child?

I have no idea.

By the word normal, I mean typical. Regular. What you expect to get when you get a kid. The word most people use anyway, whether or not it's PC these days or not...

I'll go ahead and say it: My kids are not normal. I can be OK with that to a point. There are a lot of people that are not normal. I sure don't mean to step on any toes here, so please don't take offense. I am in no way trying to insult anyone or anyone else's kids. But my sweet kids, they are not normal.

I have three children. E (boy) is 11, L (boy) is 6 and K (girl) is almost 2. E has Asperger's ADHD and OCD, L has high functioning Autism and K is speech impaired, very delayed in all areas and though not diagnosed yet, she stims and requires a lot of special accommodating, just like her brothers.

I suppose people feel sorry for me and my husband, but I don't want anyone to. I just would love for people to be more educated about this messed up world of Autism. How there are so many degrees, variations, exceptions, labels, theories, treatment options and it's confusing. It's not just that "your kids are delayed, they act a little strange, they'll outgrow it - hopefully". Not even close, thank you very much.

My kids look completely normal and sometimes you can look at them and would never know there is anything different about them. At first. But E has no social skills and flaps his hands against his legs and in his lap very loudly. He repeats things he heard over and over (yeah, like Rainman). L gets overwhelmed, sometimes freaks out and clamps his hands over his ears and will not take them off. He babbles like a baby in some little babble language he made up and can only put together a few words at times. K still eats baby food from a jar and still drinks from a bottle because she can't tolerate much else or she gags and throws up. She screams and goes ballistic if we go anywhere where there are too many people or there is too much noise.

The two older ones still have toilet issues and need pull-ups sometimes. They ride the special bus. They're in special ed classes. They have almost no awareness of how other kids their age behave, even when they are around them. They get upset and throw screaming temper tantrums if something we see as trivial upsets them. They don't get concepts other kids much younger than them seem to understand. We don't go to movies, the zoo, museums, the beach, the library, Chuck E Cheese,anyone's home or any other place that would be certain disaster should I be brave enough to try to take just one of them there. Too much light, noise, people, excitement, activity, etc. Yes, my kids have had complete meltdowns in public. The first rule that I learned the hard way is: don't make eye contact! When my kid starts up in public and it's getting ugly, I don't make eye contact with anyone! Focus on the child and deal with it accordingly. Yes, people look and sometimes they comment. So? I deal with my kid, not the ignorant person that isn't minding their business.

This is not even all of it. See, this Autism thing, way more than any parent bargains for..

You can't just give kids like this more discipline, or expect them to suck it up and act normal, or try to distract them with a toy or video or something. This is just who my kids are and it's all I know. And as bad as this sounds, please know that my kids are the sweetest, most beautiful babies to me. They are capable of loving us, and each other. They have strengths, skills, and something to offer. They are special and unique. And sometimes, they surprise when they do or say something typical.

I do make my kids behave, apologize when they have done something they should not have, and I am teaching them manners. I will not let Autism be an excuse for my kids to get away with doing anything that would be wrong or cause harm to others..

It's hard for me to relate to parents of typical kids. I will never know what it's like to have a normal child. And I don't know what it is that caused all of mine to have this. And it's not something I can really make anyone understand if they are not going through it themselves.

I hope this blog can help anyone that would like to understand more, either for themselves because they have a child with Autism, or as someone that wants to know more because they don't.

Reblog this post [with Zemanta]

Saturday, April 18, 2009

The Division in the Autism "Community" SUCKS!

It's Autism Awareness Month - can't we all just TRY to get along?
We - mothers (and fathers) of kids with Autism are a community, divided.
I hate it! Hate is a strong word. But, it really sums up how I feel about this. It bothers me. We all have something in common, a child with autism. That should unite us, yet instead we are so very divided. Attacking each other for our beliefs on whether autism was a result of an environmental trigger or vaccines or genetic. Attacking each other for our avenues for our choices in therapies or interventions.
Why the hostility?
I have many many friends who are also moms of autistic kids, like myself. I'm part of several parent groups online and off and I wouldn't have it any other way. Some of my friends are like me and others very different. I have friends who do biomed and friends who don't. Friends who believe their child was autistic from birth & genetics and others who feel it was environmental or vaccines. I have friends with kids on the diet (like my son) and friends who think the diet is a waste of money. I have friends who do chelation and/or HBOT and friends who do not.
Those who know me, or read my blog know that I practice the GFCF diet for my child. I've also shared info on some supplements that he uses. I don't get into nitty gritty on dosages or meds we may or may not use as I don't think that's the general public's business. This past week I reviewed two books that deal with biomed - Jenny McCarthy's new book and LeeAnn Whiffen's book. Immediately I witnessed fallout among my circle of "friends" because I go on record as doing some biomed for my child. How dare I? I've taken a side. I'm Biomed. I'm the evil. I SUCK! Keywords: MY CHILD. Tonight, I am sick of walking on eggshells and trying to not offend anyone. This is my child we are talking about. What you do with yours is your business and I'm not chastising you for making different choices for your child. Keywords: YOUR CHILD.
I've made a point to be Switzerland as much as possible and not cast judgement or throw stones at others for their choices. Yet, I continue to be on the receiving end of stones and I'm feeling pretty beat up. When the community is so busy fighting and at odds with each other over causes and treatment, where is it getting?
Nowhere, and fast.
----------------------------- 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?

For the Last Time, It's NOT My Parenting (and if you ask again, I'm Going To Throw You Off A Bridge)

It started over tea. She wanted to have a tea party. But she didn't want to use water. That's for babies! She wanted me to make tea. Which I couldn't do, I was helping her older sister with her Algebra. Part of homeschooling is taking turns. Littles, at 7, isn't always good with that. Well, let's face it, she is really bad at it. When it is her turn, she expects everyone else to wait. But make her wait? And it is Meltdown-City. She will extract her pound of flesh, one way or another. Of course, it passed. It always does. But the aftermath for me is the hardest part. The way I am left feeling: drained, defeated, ready to cry.

I suppose I shouldn't be too upset. She hasn't had a tantrum all week long. Her dad was gone for ten days and in that time, she has been fine. We have had a few missteps here and there, but no full blown I HATE YOU I HATE YOU I HATE YOU episodes. Maybe that means she is getting older. Maybe that means the developmental delay that is Autism Spectrum Disorder is righting itself. Maybe that means the naked chanting that I did by melting green crayon and throwing sheets to the wind has paid off. (I am just kidding about that last part.) Maybe it's just that the tide is high and the moon is low. Hell, I don't know.

And that's part of the problem. I don't know. If you ask me a question about grammar or algebra or llama breeding, I can probably tell you. Or, barring that, I can find out. But as far as the exact reason my daughter is tantrumming, or the tried and true foolproof method of stopping said fit, that seems to be missing on Google. Certainly there are suggestions, but what if they don't work? What then? With children, you don't add A to B and necessarily get C.

If I was a carpenter, I would be sure that I have the latest tools, the best ones to get the job done. A hammer will always work as a hammer. A level, well, that's designed for leveling. With just a few simple tools, a carpenter can build many things. With a few more, he becomes a master craftsman. It can take a lifetime to wield the tools correctly. But even if his skill is only passable, he will be able to create a chair.

As a parent, I work hard to develop my parenting skills. I think if had neurotypical children I would be a pretty good parent. I add tools to my toolbox often. They say if you only tool you have is a hammer, then everything looks like a nail. I am guilty of this at times. But a soft word or patience? Those don't always work. In truth, there are times that I run out of tools in my toolbox. I keep thinking if I just gain more gadgets, if I just learn more schematics, I will, eventually, build the Taj Mahal. But with autism? All bets are off. Sometimes, a level ends up as a fulcrum. Or a hammer ends up as a paper weight. Sometimes, I end up dancing around like a monkey because I have to think outside the box. Down is up, and and Left is Right and OhMyGod is it 5 o' clock yet??

I am not a drinker. I have a bit of Irish Cream or Kahlua in my hot cocoa or coffee about twice a month. A glass of wine about as often. And though I talk about it, I just don't do it. There are times I wish I did drink more. Then I wouldn't care so damn much when I reach the end of the toolbox and find nothing but sandpaper and a ball ping hammer. But I do care, and it kills me and I always wonder, why can't I be a better parent? Why can't I help her calm down before she gets to that place where she is completely unreasonable? Why must I be left feeling like a hollow shell with every nerve exposed? What am I doing wrong?

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 and her own site, Send Chocolate reflects her passion for her children and autism. She is the founder and editor here at Autism Sucks.
Reblog this post [with Zemanta]

Friday, April 10, 2009

Three Cheers For Poop!

Never in my life did I think I would call my child over to look at my poop. Never. Disgusting, right? Now, we've all taken a look at our own BM's (bowel movements for those that haven't discussed poop extensively in a clinical setting), perhaps been impressed or grossed out, but that's between you and you, and is extremely personal. But how do you toilet train an Autistic child who isn't speaking yet, and rarely makes nonverbal requests (unless you include gesticulating wildly when he catches a glimpse of Rice Krispie squares on the kitchen counter)? Modeling the appropriate behaviour is one way (hence showing Max my poop). Another key part of toilet training for a child with Autism is getting him used to the routine of toileting, even before he is actually ready to toilet train.
Max will be 3 years old on April 23rd. We know he isn't anywhere near being ready to "poop in the potty". It may take him a year or even two before he can manage it. If you think about it, there is a lot required for going the bathroom. If you break the process down, it's no surprise that kids, let alone kids with Autism, find it challenging. We are breaking the process down into tiny steps for Max so that he will gradually be able to incorporate them into his routine. The hope is that when he is ready, toilet training will be less stressful on all of us because he understands what is expected of him.
This is the toileting process as I see it:
Recognize that you have to go to the bathroom
Let an adult know you have to go the bathroom (verbal or nonverbal communication)
Go to the actual physical bathroom
Lift toilet lid, get little toilet seat in place
Pull pants down, pull underwear down
Sit on toilet
Wipe bum
Pull underwear up, pull pants up
Get down from toilet
Admire poop (you know you do this, admit it)
Flush toilet
Get up on stool to wash hands
Turn water on
Soap up hands (the soap texture is hard for some Autistic kids)
Rub hands together
Rinse hands
Dry hands
Do a big cheer for completing the process
That's no less than 20 steps! Geez...and we parents expect our kids to get this down in a day? Seems a bit unreasonable, even for a neurotypical kid.
We have reduced the process down to 3 steps for Max:
Change diaper
Put poop in potty, flush
Wash hands
He seems to be fairly comfortable with these steps, and isn't objecting to having his diaper changed nearly as much as he used to. I think this is because he knows that when we go in the bathroom, it is to change his diaper. We are being very clear about what is going to happen by using an activity strip, and telling him what we are doing and what is going to come next. He now reaches for the handle to flush the toilet after we put his poop in the toilet, and then moves to the stool to get up to wash his hands. I need to add a "dry hands" image for him, and also put a picture of a diaper on the front of the bathroom door so that he can either point to it, or bring it to me when he needs a diaper change. This process will not be completed in one day, but it will eventually result in Max being toilet trained. We just have to remind ourselves that this is a marathon and not a race.
One more thing - if you live in Canada, and your child is over the age of 3 years old and has a disability, you are eligible to receive funding for diapers from Easter Seals. With the costs of Max's therapy mounting, I am looking forward to getting help paying for diapers (though hopefully we won't need it for very long!)
Katrina Carefoot is a working mom with two children, her son Max, almost 3, and her daughter Cameron, almost 1. She works as a Marketing Manager in Toronto and writes about Autism, pop culture, and all things mommy at Fickle Feline.

Thursday, April 9, 2009

Autism and Girls

this is a repeat of a post on my personal blog from about a year ago..

Not a lot is written about girls and autism, because it is just beginning to be understood. When Hans Asperger first classified it, he thought he had found a boys-only disease. It wasn't until years later that we are finding that more girls are affected than originally thought. The rate for those referred to for diagnostic tests is about ten boys to every one girl. But of those, the rate of diagnosis is one in four. That's one girl for every four boys diagnosed. This rate holds true for both classic and high-functioning autism/Asperger's Syndrome.

In the book edited by Tony Attwood, Asperger's and Girls mentions that one of the reasons that girls are less often referred for diagnosis could be that because girls are naturally more nurturing than boys, they take the "shy and awkward" girls under their wing. In this way, they teach them the social rules.

As a mother of both a boy and a girl with autism, I would agree that girls give more benefit of the doubt than boys do. Girls in elementary school can be kind and helpful to a girl who just doesn't get it. JBug, my oldest daughter had this experience with a friend. She is naturally slow to warm, reticent around new people or experiences. Her friend took her aside and taught her "Embarrassing Lessons," which was really just a way to teach her to laugh at herself and not be so self-concious. JBean has first grade friends that are very kind to her and accept her for who she is, at least at this age. In contrast, JBear has struggled with his peers, who find him "weird" and "obsessed." He often feels ostracized when it really was a matter of just being able to read cues in order to join a game.

JBug's friend also came alongside her and taught her some of what Brenda Smith Myles calls "the hidden curriculum," that is, all of the things that no one ever tells a child, that are considered polite, or kind. For instance, if JBear were to talk about Indiana Jones and as he was doing so, the person he was speaking with kept glancing at his watch and looking over my son's head , think that has happened before? that would be pretty clear to me that the person had somewhere to go and the conversation needed to come to a close. Someone with HFA/Asperger's would not get this reference. He would have missed the entire "non-verbal" conversation. According to a UCLA study, 93% of conversation is non-verbal. So you can see how difficult it can be to interact if you are effectively blind to the social cues!

In my experience, girls in elementary school are much more forgiving of social gaffes. By the time a girl reaches jr. high, it is expected that she will "know" the right things to do and say. If she does not, most girls will distance themselves from the girl who is less socially-savvy. Since girls bond with their "drama," any girl who doesn't play the game will almost certainly be, if not ostracized, just not befriended. I work as a church youth worker with jr high girls (now going into high school). For two years I have watched this happen. The interesting thing to me is that if a girl is more severely affected by Asperger's, they do give a little more leeway, but they still do not count that person as a friend. If a church group operates this way, I can only imagine that school must be even more difficult for a girl with Asperger's Syndrome.

I ran across this article a while ago, about the perils of Asperger's as a female. The information is older, but it bears repeating.

Dr Lorna Wing is a veteran psychiatrist who devoted her career to studying autism after her only child, Susie, was diagnosed with a severe form of the condition. She says girls on the autistic spectrum often appear "normal" at first meeting. "They appear to be more social than boys with autism, but then you notice that their sociability tends to be inappropriate," she says. "They might go on and on talking about the things they are interested in, and they fail to notice that you're not remotely interested. They have a poor ability to 'read' people, and that's something that's often very highly developed in females."from the Guardian

The article goes on to state that it can be difficult in the workplace for a woman with autism, because she doesn't pick up the social cues or display the empathy and understanding that many associate with females. She may face problems because of judgment.

This means that women with autism often struggle at work because they lack what is often taken for granted in women - the intuitive ability to understand where people are coming from and how to manage situations. Because of subtle sex differences, we tend to "expect" more of women in the workplace in terms of smoothing things over, of saying the right thing; and whereas we would excuse a man who lacked these abilities, we are subliminally a lot less forgiving of a woman who has similar shortcomings. from the Guardian

With all of this gloom and doom, sure I am concerned for my girls' futures. JBug has never been diagnosed with Asperger's, but has many traits that come with it, including brilliance, which will serve her well. She is already smarter than I am...shhh! Don't tell her! I believe JBug will be fine, eventually. She will find her niche and her "people"...once the drama from high school stage is finished. She doesn't have time for the gossip or the "immaturity" of her peers. Sometimes she is too serious for her own good. She will land in a scientific community, where Logic is king and Rationality rules all.

My youngest daughter is an enigma to me. JBean has been diagnosed with Autistic Disorder, but is pretty high-functioning. I don't quite know what will happen with JBean. She is content to sit and play with her toys, making voices for all of the Ponies, Pet Shops and Puppy in my Pockets. She makes up long and winding songs about the same. She will often play, undisturbed for hours, if I let her. But she also enjoys cuddling with those she loves, reading (or rather, learning to read) and playing/arguing with her brother and sister. All sounds normal, doesn't it? And yet... there is that certain "something" that makes the autism diagnosis.

She cuddles a little too much, too hard, and doesn't stop when first asked. Her voice is just a bit *too high-pitched, almost baby talk. When she wants your attention she goes from 0 decibels to 999,999 in a split second. We say she has two settings: normal, and car alarm. She is very private about her thoughts, and I don't know if that is because she isn't keyed into them, or she just keeps them to herself. She is very difficult to read, and I am good at reading people.

She is still so young. Who knows what time and training have in store for her? And maybe as we go, more research will be completed that explains more of the mystery behind autism and what exactly we can do about it. I am thankful for articles in mainstream publications that shed light on the issue of girls and autism, but they are few and far between. For now, I continue to work with her, read a lot and pray. I definitely pray.

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 and her own site, Send Chocolate reflects her passion for her children and autism. She is the founder and editor here at Autism Sucks.
Reblog this post [with Zemanta]

Friday, April 3, 2009

Perspectives of a Guilty Parent

Originally posted at Mamabusypants on April 1. Life on the Spectrum recently wrote: "Someone said that they were tired of some parents with children who have autism, painting autism as if it were some sort of cool adventure. Autism is hard, depressing and sometimes unbearable." That resonates. Mr. Busypants has mild autism, which translates into autism is only mildly a pain in my ass. Sometimes I feel guilty about his mildness. I'm stuck in the middle: my kid's not quite normal, but he's also not completely, hopelessly, overly frustratingly autistic. So while I deal with the "autistic moments," I do not deal with them at the great frequency that many others do. Initially, the diagnosis and subsequent transitions from babyhood to toddlerland to preschoolville were hard, depressing, and sometimes unbearable. But now, while Mr. Busypants is in Kindergarten at least, the challenges are not much larger than the average parents' (different, but not more overwhelming). That may change, but I feel privileged to just love his mind and the unique perspective he brings to life. At least for now, I get to see it as a cool adventure. To be honest, I fear my neuro-typical (NT) daughter, Miss Chattyshoes, drama queen that she already is, will be way harder to raise. She already has an opinion about everything. When she really, really wants something, she repeats herself, each time at a higher decibel, until only dogs in the neighborhood and the dolphins at the Brookfield Zoo are able to hear her. I'm constantly being ordered to "sit down mama," as she plants her chubby cheeks (yes, the other ones) onto the couch and pats the spot right next to her. It's often frustrating because there's an endless list of things on my To Do list (like laundry, major clean up, grading, dishes, more major clean up, Facebook), but recently I decided to fall in line with the little drill sergeant. I mean, she'll only be little once. So now I'm getting caught up on all kinds of reading. It's distracting to do my Bible study with Elmo in the background, but somehow I manage. As for Mr. Busypants, well, so far he is wildly navigating the line between having autism and being a regular kid. He has a lot going for him in that he wants to partcipate with others, but he also has obstacles less known to those who are neuro-typical. He's coping with the sensory bombardment that's magnified because he has autism, the obsessive/compulsive need for structure and repetition as he processes the world around him, and the emerging knowledge that he is indeed different. Jeannie Anderson is a stay-at-home mom with two children, Mr. Busypants, 6, and Miss Chattyshoes, almost 2. She is a part time college-level writing instructor at three Chicago-area colleges and writes about the Adventures of Mr. Busypants at Mamabusypants.
Reblog this post [with Zemanta]

Thursday, April 2, 2009

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:
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>.
Reblog this post [with Zemanta]