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.

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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
Relax
Poop
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.

The Word Doesn't Change the Kid: Autism 101

As a new author of this site, I thought I'd start by introducing myself. My name is Jeannie and my six-year-old son, Mr. Busypants, has mild autism. Below is one of my earliest blogs. I thought I'd start off on this site by sharing my story about when autism entered my life and what having a child with autism means to me. Miss Chattyshoes is interested in all things potty. The other day she stood over the toilet to say "bye-bye" to its flushing contents. Suddenly her nuk popped out of her cheeky little face, instantly sucked down to the point of no return. Perplexed and concerned, she pointed to the toilet and begged for "ki-ki." At this young age, Miss Chattyshoes is already declaring her independence. She does so in many ways, but the most obvious is her reaction to peer influence. One of her best buddies is M, a neighbor from across the street. M is 7 months her senior and full of words and wisdom. For example, we've been calling Miss CS's nuk a nuk for 18 months. She spends one day with M and her nuk is now a ki-ki. The same goes for her sippy cup, which was just that: a sippy cup. But M calls it a ba-ba, so now Miss CS calls it a ba-ba. What I knew about autism came from two sources: the movies (specifically Mercry Rising and Rain Man) and a film we watched in the 6th grade (so bizarre that I even remember this particular film) that described autism as a condition where the person was lost in his own little world and behaved like a chimpanzee. The other tidbit I knew of autism (or thought I knew) was that one day a toddler was talking and engaged and seemingly the next his social and speech skills were lost. This was autism to me. And so I began working through my fear that one day my baby would wake up and be mentally, emotionally and socially gone. With me, Mr. Busypants had a boisterous laugh that filled the house. We spent hours running around our house in Lisle, circling through the kitchen, dining room and living room, hiding and seeking, stomping and giggling. With others, he was stoic and serious. When the word autism re-entered my vocabulary, fear as I had not yet known it came as well. It took a while to work through the anguish. For me, the first step was recognizing what autism was and what it wasn't. The DSM-IV defines autism as (I) a) impairment in social interactions marked by a lack of eye contact, facial expression and social gestures. CHECK. b) impairments in communication manifested in a delay in spoken language and (later) repetitive language and a lack of spontaneous make-believe play or social imitative play. CHECK. c) restricted repetitive behavior patterns, interests and activities including preoccupation with balls and matchbox cars (CHECK), inflexible adherence to routines and rituals including but not limited to eating French toast sticks every morning two years, throwing a sippy cup and all unwanted food off the high chair tray, being hypnotized by spinning objects such as ceiling fans, and flicking objects such as door stops for extended periods of time (CHECK CHECK CHECK CHECK). Stereotyped and repetitive motor mannerisms including head shaking, picking up every stick within a 2 mile radius at the playground, and general Monk-like behavior (think 2002 series appearing on USA about an obsessive-compulsive ex-cop who solves crimes) (CHECK). DSM-IV does NOT describe autism as: (a) futureless (b) hopeless (c) relationshipless (d) joyless (e) speechless (f) loveless In a nutshell, the word did not change the kid. Mr. Busypants is spectacular. You need only look into his eyes to see the wheels turning--the thinking process is like a roller coaster ride. Fast, intense, thrillseeking. It's all there in those bright, blue eyes. He sees things we can't. He organizes. He engages. He responds. He follows through to completion. I fall short on all of the above on a semi-regular basis. From the early age of 21 months, Mr. Busypants had a fascination with water. He couldn't hear me scream his name two feed away, but turn the bath tub on three houses down and he was there in a flash. Part of that fascination extended to the toilet. A week into our new Aurora house, he too "broke" a toilet. Though Miss Chattyshoes hovered over her daddy in the master bathroom as he diligently retrieved her invaluable nuk, I mean ki-ki, from this vital household fixture, Mr. Busypants had dad replacing the first-floor toilet after flushing a mega-block. This kid is larger than life; he thinks big. 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 Mama Busy Pants.

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