It'll Get Easier?

When the boys were first diagnosed, people kept telling me, “It'll get easier as they get older.” Obviously, those people had never raised autistic boys.

I am a single parent. I have twins, one high functioning and one low functioning. My low functioning son has run me through the gamit – last year we discovered he is an eloper, after jumping the fence and being found on the 91 freeway. He also jumped his grandparent's fence and was found on the Los Alamitos Army reserve Base. Now 13, he is in the middle of adolescence and has discovered masturbation. Yes, this is one topic where there is no help out there, on the internet or from doctors. People don't want to talk about it, but if you have a low functioning child who is not developed enough to ejaculate, he will pee, and pee everywhere. Behavioral therapists tell us to do social stories, which he memorizes but doesn't generalize. You can't take his reinforcer away – it's built in. We try to tell him that shower time is the time he can do that – the kid takes 20 – 30 minute showers now. Lucky kid - I'm lucky if I get 5 minutes. In fact, this morning, while I was taking that 5 minute shower, he did it again and peed all over the floor. The doctor is raising his prozac dosage, but doesn't have hopes that it will calm his behavior – it might make a 50 year old man less interested, but it's doubtful it will have that effect on a 13 year old boy. But we will try, because at this point, we will try anything. He mainly does this at night, when everyone is asleep, so there's no chance at redirecting his behavior. He will play with himself, then pee over the side of the bed, down the wall, and onto the floor. I discovered this when his room began to smell, but I couldn't find anything obvious – his bed is a loft bed against the wall, and there are baskets of toys and things under it. Only when I got down on the floor did I discover that there was a veritable flood of pee, the carpet was soaked beyond ruin, and the hardwood floors underneath were beginning to get moldy.

As they boys get older, I find myself wishing that just for a day, I had typical kids, and if that wasn't possible, wishing that everyone else had low functioning autistic kids, just so they'd really know what I go through.

written by a mom who wishes to remain anonymous, based on subject matter

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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?

In my house, EVERY DAY is World Autism Day

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

• On Twitter
• On Facebook
• via email:

The clock is ticking. His life depends on it.

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

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Am I Doing It Right?

I feel so fortunate that Bacon is 'high functioning' and that he appears to everyone to be a 'normal' kid. I am also beyond blessed that our school district is so great at offering the services that he needs and has such excellent teachers for him. 

I recently returned to work full time though, and am not as involved in his day to day (read here every single second of everything that is going on) activities. I am worried that this is going to cause all kinds of trauma and distress to him in the long run though. The guilt is sometimes horrific. 

Also we are still having all kinds of issues with sensory potty training issues. Part of it is attributed to age I know, but then part of me feels like this will be a never ending battle because of the Asperger's. I cannot remember the last time we went a full day without a pee or poop accident. We take away privileges, we remind him endlessly to go, and still nothing works. He is about 75% trained and has 3 months until he turns 5. I wouldn't be so worried if he wasn't going to mainstream kindergarten, where peeing your pants can turn into some kind of ridiculing nightmare. 

He also still won't sleep in his own bed. He starts there, but always ends up in our bed. We have tried the Super Nanny method of escorting him back to bed 7,952 times, we tried weighted blankets (which freaked him out) sticker reward charts, money, begging and nothing works. I get up at 4am so the constant up and down just doesn't really work for me because I have to sleep in order to be alert for work!

Did I do it wrong by not getting him into OT? Did I do him a disservice by not keeping him in psychotherapy with the lady that was by the train tracks? (Trains are his thing, and every time a train went by he went crazy.) Or am I doing okay, by sort of letting him work it out on his own with school and seeing how it goes? 

He has made so much progress! He can have a conversation with people, he can recognize people's feelings, he can write his name! He is adding! He asks me how MY DAY WAS! Things I NEVER thought I would see...and I know that some parents of kids with Asperger's and Autism will never see. 

I still worry that I am doing it wrong, that I am not doing enough for him. Am I crazy? Or is this what being a mom is like? 

Mrs. Tantrum has a 4 1/2 year old son with Asperger's. She has been married for 11 years, and works full time outside the home. To read more about her crazy life,  her thoughts about random things, Coffee, Anxiety and more, head over to her blog Momma's Tantrum. She posts there every day, or pretty darn close to every day. 

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