Response to Kathryn's comment

I was going to post this as a comment in response to the “Why Autism Sucks: Chocolate Chips, Cheap Wine and a Big Ball of Poop”article, but one of the comments has gotten me so riled, I have to post as a regular article.

Richelle's a lot nicer than I am – I was bloody furious when I read Kathryn's comment. Kathryn says she has autism, but she is obviously verbal – and verbal enough to express herself in a coherent manner. One of my sons is neither. Kathryn, if you do have autism, you should realize that it takes many forms, and the form you seem to have is not one that would push me over the edge as a parent. One of my sons is high functioning, but is nowhere near as well spoken as you. He has had times when he wouldn't even venture out of the house due to anxiety. This I can handle. My other son, on the severe, non verbal end, is currently freaking out because the timer went off in the kitchen and I did not jump right up to turn it off; instead I finished typing the last sentence.

My mistake, because it is now 15 minutes later that I am getting back to this. Kathryn, did you have a mother & father & a stable home? My crappy ex husband took off 2 months after my boys were diagnosed (and has had no contact at all for the last 9 years) – I am doing it all on my own. I have no breaks, no weekends & holidays off, I have had to give up my job & career & have learned to live off of IHSS because no one else is willing to do what I do for minimum wage to take care of my boys. How DARE you tell me to stop whining & take responsibility! I went up against our school district & filed due process 6 times between the 2 kids and won each time before I realized I could do a better job homeschooling one of my boys and the money would be better spent on decent therapy than lawyers.

My non verbal son is currently going through adolescence and masturbating every chance he gets. The school district, the regional Center, the Behavioral Therapists – no one knows how to help him. He peed on his carpet so much that I had to rip up the entire carpet & redo the floors. He is also an eloper – I have padlocks on my windows and doors so he doesn't run off & get hit by a car, because he has no recognition of personal safety, despite years of therapy. Am I saying I wish he wasn't like this? You're damn well right I'm saying that! It is not all lovey white light and we just have to accept our children the way they are – it's the world that won't accept them, or take care of them after I am gone. My son will never function in the world we live in, and I am constantly trying to find the best place for him to fit.

I love my son, but yes, his autism is similar to a death sentence – without me, there would be no one willing to take care of him, and maybe it wouldn't be actual death, but he would be placed in an institution & drugged into compliance, so don't you EVER dare to tell me to stop whining & accept responsibility. This is my place to vent, and to find support & sympathy, well deserved and definitely needed, and if you really want to know what severe autism is like, you come on over & babysit for a couple hours. You could use the eye opener, and I could use the break.

Obsessions

Ah, obsessions. If you have an autie kid, you know about them. My son, Moe, has had obsessions since he was a year old. At first it was cars. In particular, one blue car from a parking ramp toy, but in a pinch any car would do. Then it was books and anything with letters. This was pre-diagnosis, so at the time we didn't consider them obsessions. In fact, we were very proud of our little man's ability to sit still for so long and amazed at how young he learned his letters.

Then came the electronic toys. Anything with lights and sounds could become all-consuming: the toy phone, followed by the shape sorter, the electric guitar and the zebra bouncer. Around the time my daughter was born, it was the Incrediblock. He would play with that thing, watching the spinning top go around and around at the push of a button, for 45 minutes. Not a typical behavior for sure, but certainly a coping mechanism for the changes that were going on around him, over which he had no understanding and no control.

After Moe's diagnosis, and the all-consuming shopping cart (also with lights and sounds) obsession, we removed all of these toys from the house. They would make appearances during ABA sessions as reinforcers, but for the most part they live in the garage. Occasionally, I will bring one out if I need Moe to sit still for a little while, say, during a haircut or doctor visit. I don't think these obsessions are harmful in and of themselves. Clearly, Moe gets something from the visual stimulation, so I like to allow him a little time with these toys, but they aren't conducive to social interaction.

Moe's latest obsession is water. He has always loved to play in the water, whether it's bath time ("bath" was one of his first words, although we don't hear it much anymore), hanging out in Grandma and Grandpa's pool, or splashing at the water table at school. So as summer approached, and I grew concerned about filling our afternoons, I was excited about playing with sprinkler toys in our backyard and going to some great parks in our area that have really cool water features.

But now Moe has just gotten tall enough to discover the water dispenser in our refrigerator door. Our fridge doesn't have a child lock, so I've been spending a lot of time trying to teach him that pushing the lever is not okay. My efforts so far have not been successful. Moe goes right over and makes himself a nice cold (filtered!) shower. Even as I get in his face and tell him "No!" he giggles and grins like he just discovered the greatest thing in the world. Yesterday, I got the bright idea to tape up the front of the door so he couldn't get to the levers. Moe didn't miss a beat, taking the bottom piece of tape right off, reaching his hand up, and letting it rain. We can disconnect the water supply, but I'd much prefer it if he learned to not do it at all, since I don't want him flooding other people's houses. Clearly, this is going to take some work.

Free Advice

I want one of those shirts that say, "Parenting advice not welcome unless you too have a child with autism." No, actually, I want a neon sign! I am fed-up with the self-proclaimed experts who have endless streams of advice about my child. One mother of three, jumps on my case about not getting my child out enough. She knows a child with autism who goes out every day. Out, in this case meaning to crowded places like malls and parades and the local pool.

It turns out, the child she "knows" (who is a teenagaer, NOT a two year old)goes to the donut shop with his mother every day. The child comes in, orders his donut and leaves. Sounds to me it might be some sort of social therapy.This same helpful mother also claims that if my child was surrounded by children every day, he would "get used to it." Right. The children she speaks of are her three boys. They are cute kids but they fight violently with one anoher constantly. I'm talking rolling on the floor all out brawls! They do not have autism. They are just underdisciplined. They climb on tables (yes the dining room table too), they yell at their mother and they have even slapped her.

This woman knows my plight. I am a 47 year old adoptive mother of an autistic child. My 57 year old husband has severe COPD and is beginning to exhibit signs of eary alzheimers. I am in the house 24/7 x 365. I go out to take my child to his doctor or to group. I also go food shopping. Where ever I go, my child comes with me. So, he does get out. Other than that I am at home. I get no 5 minute break other than when both take naps. I have lost all my friends. Who wants to be with someone so boring? So, any way, my husband recently started having some serious issues with his COPD. This wonderful woman offered to babysit so I could go to the hospital with him. Didn't she show up with her three children and a friend. Well, needles to say, my husband again had to go alone.

My body feels like it has been put through a ringer. I am tired and so stressed out. My patience are wearing very thin. I am telling people I love to F off! Funny thing, people still come to me with their problems. I used to care. Now, I am too burnt out. I cannot get respite, I can't afford what sitters charge. This is it for me for a long time to come. I just hope that when my husband passes, I will have found some way to be there for him. That is, if the aloneness of this whole situation doesn't kill me first.

Ah, The Holidays and Other Traditional Stuff...

Comin' to my safe haven to vent without the peering, searching, judging eyes. We are on holidays. As WE all know, this is not quite the happy family experience of others. Change is not easy. Being out of even our not-so-strict routine is not easy.

It has been lovely but difficult. The worst bit though has been the catching -up-with-friends-for-meals. Otherwise known as the traditional breaking of bread with friends. We tried it once with HIS godmother. She is wonderful, understanding, and has a boy in between my two. And still doesn't get the FOOD issues...

"You said he eats steak, we have steak..."
Yeah, but it is when it is cooked by HIS Dad, in a kitchen, and even then if there is any dark bits or chewy bits... aah, no.

Then we had dinner with a friend two nights ago. She is very understanding. Her brother has schizophrenia, she lived it. So when he refused to eat the spaghetti bol because it had "too much oregano...", she was amazing. But I was stressed to the max.

SO, at the last leg of our holiday, when I knew limits were getting way beyond stretched, when we had a two or more hour drive there and then another two or more hour drive to here, where we are spending the night, I refused A MEAL with friends... Well, I had really good reasons. I think.

Sadly, because of this they bailed. Even sadder, she is an aide for ASD kids. And my second child's Godmother. We still planned on a couple of hours catch up, just no food involved. Easier, happier, less stressful for all. But somewhere, somehow wires were crossed, or messages mixed, or maybe they just felt we were not doing the right thing by refusing lunch or dinner.

For us it was not a choice, it was the only way we could go without total meltdown. Him and me.

God, this is hard. And impossible to explain to anyone who does not live it.

who rants elsewhere. Frequently.

Why Autism Sucks: Chocolate Chips, Cheap Wine and a Big Ball of Poop

When you cap off your night with two glasses of Merlot and a bunch or raw chocolate chip cookie dough, chances are the day has been rough.

Autism. Really. Sucks.

And my rose-tinted glasses are frequently cracked.

Some days, they simply cannot be found. And I don't even bother to look that hard.

Why did autism suck today, you might ask????

Well, there were the typical, every-day reasons. My non-verbal, six-year-old son screamed in frustration about something that still is a mystery to me. He carried out his current stim with just as much intensity as he did the day before. I literally had to sit on him in order to cut his toenails.

And, for some reason, for the first time in, well, a long time, he pooped in his pants.

His swimsuit, to be exact.

At a city pool.

Thank GOODNESS (I won't say "God" because I am not in the mood to bring God into any of this), he was OUT OF THE POOL. And I noticed it as soon as it happened./

But when the "bright side" of things is that you didn't have to tell a life guard to clear the pool on account of your six-year-old's poop ...... well, is there REALLY much of a bright side?

Oh, and let me not forget, I was at that city pool with my autistic son, and my four-year-old daughter, and well, NOBODY.

My son has done great taking himself to the potty at home since we really hit the potty-training business just after his fourth birthday. And I am so glad. But, STILL, STILL, I can't count on him to communicate the need to go when we are out in public.

And the kid is a pee fountain.

I take him to pee more frequently than a chain-smoker lights up.

We had been doing so well with not having accidents, until recently ....

And when the accidents start, they seem to come in big numbers.

But, REALLY, POOP???? And at a pool????

I am Ms. Automatic-pilot when there is such a situation. I am not good at many things, but if there is an autistic child with a poop crisis in public, I am your girl.

So, when I saw the face, and confirmed the existence of a wet, messy poop, I just went into action.

I took both kids to the bathroom immediately and got my son to the potty where he finished his business. I checked out the swimsuit and realized it was NOT worth saving. Good-bye new swim trunks. I cleaned up his messy bottom and took him straight to the shower, where I scrubbed the both of us down with soap as if we were about to perform surgery. I went back to the bathroom stall and cleaned up the toilet. And, because all of the spare clothes for my son were in the car a good distance away, I let him wear my tee-shirt. (I had my swimsuit on, people, so don't get any ideas).

It was all a pain. A great big pain. Shouldn't we be well past this?

I certainly let my son know just how unhappy I was with the circumstances. He wasn't very happy either, my poor boy.

It makes me frustrated.

And it makes me sad.

Sad for me, because, yes, I sometimes allow myself a bit of self-pity. I had no idea this would be what I was in for when I first learned I was pregnant.

Sad for my son, because, after all, he deserves the most sympathy. He is the one who struggles to understand this world, and without the benefit of ANY language.

And sad for my daughter, who sat through this whole ordeal on a bench in the bathroom by herself.

She is plenty old enough to understand that her brother should not be having these problems.

She is sophisticated enough to realize that her mother is S-T-R-E-S-S-E-D. And, that, in turn, brings stress to her life. She actually worries about me. My four-year-old daughter worries about me.

Oh, lord, just pile it on.

I am so very, very sad for my daughter because there are many moments in her life, just like this one today, where she sits or stands alone, waiting .... just waiting.

Waiting for me to tend to her brother's problem, need or outburst.

Waiting for me to prompt whatever form of communication I can get from him, even if it is just eye-contact, a nod of the head and a "yeah."

Waiting for me to finish working with him -- because I feel so much guilt if I don't spend at least some time trying to help him accomplish something, even if it is as simple as focusing on a puzzle.

It simply is not fair. There should be someone else on the scene. Someone focusing on her. Or sharing the responsibility of focusing on her brother so that I can sometimes get to focus on her.

Oh, how I would love to just focus on her.

But, even when I get a moment to do so, I am so tired.

So very, very tired.

I am not what my kids deserve.

Either one of them.

And I just don't know if I ever will be.

I have my doubts.

But, man, can I clean up the poop in a crisis.

Is there a career in that, by the way, because I sure could use a job.

Leah is a single mom of two children, one who has autism and is non-verbal. She writes at fruity pebbles for dinner.

Bullies Nearly Sully Disabled Child's Sunny Weekend

Like many 11 year old boys, my son loves to ride his bike. He loves the freedom of the road, the challenge of finding cool neighborhood bike routes, and the wind in his face. Biking is his ultimate freedom . And that freedom includes neighborhood rides to the sports card and memorabilia shop and the local park. Great exercise, exploring one's community, and catching some sunshine was the goal for Saturday, isn't that enough?

Apparently, for some bullies in a car, it was not enough.

As my son waited on his bike at the light on a busy street close to our home, some teen boys in a car yelled at my son, called him names, and pelted melted cupcakes at him.

What were those kids thinking? I think I know. I suspect it went something like this: "Hey, see the fat kid up there on the bike? Let's throw this at him. It'll be funny!" (Or something said far cruder, I imagine).

The cupcakes were thrown at my son's face, but he blocked the throws and it splattered over his favorite t-shirt and shorts, his right arm, socks, and shoes. The perpetrators drove off instantly. My son was humiliated and upset. He called home on his cell phone (yes, he has one, a move that at first we thought was crazy to do for someone this age, but now take great comfort in the fact that he has one). He told his dad what happened. My husband jumped in our car immediately and drove the few blocks away to get our son. After loading up the bike and our son, they drove to get my daughter and I, who happened to be out on a neighborhood walk at the time, to tell us what happened.

And what happened would upset any child, but my son is not any child. He is on the autistic spectrum  (high functioning) with some added conditions. Life is not easy for my child. The fact that he can even ride a bike (despite some impaired fine and gross motor skills) is a big deal. He's worked hard, despite huge challenges to earn his independence on his bike. He has to work harder, plan further, and deal with some issues that no child should ever have to deal with. While he is a big kid, medications to treat his conditions, pack on weight, something he struggles with every single day. The hardest part of it all and the most difficult to stomach, is that my son has been the survivor of bullying in the school system and elsewhere multiple times. He dealt with the following: being called dumb, slow, weird, disturbed, and fat. Some of these cruel peers from his mid-elementary school days, did receive punishment for their poor behavior. Most didn't. I even had some of them do this right in front of ME, in a bold and uncaring move. Even adults in my community, who were either unwilling or unable to have understanding, said inappropriate comments within an earshot of my child. Each day is work for my son. Each day is work for our family. Each day presents challenges.

And now this.

But there is a good news story in all of this. Really.

After being very upset when my son returned home, he did something rather unexpected. He handled the situation very maturely and wisely. He said, "I am mad about this, but I am sad, too." He remained calm, despite it all. In the past, my husband and I would have expected a tantrum, tears, depression, and/or anger due to his conditions. Not here. Although he did say, "I don't think I want to ride my bike anymore." It was then, that as parents, our hearts got crushed. My husband was even reduced to tears when our son had left the room, he was so shaken. We were so angry, sad, and disappointed. We wished we would have caught the horrid people that did this and had a word with them. We wished life wasn't so unfair. We wished, since that this happened on a busy street, that some caring adult would have stopped to help, offer a kind word, or something. This did not happen. Nothing happened but injustice and cruelty. And even though we worked hard to show love, kindness, and support to our son for the rest of the evening, it was still hard to breathe and think. We wondered if this would be a big setback for him and this worried us to no end.

But it was this 11 year old,  developmentally and learning disabled child that turned it around in less than a day.

First thing this morning, my son declared, "I am going to be riding my bike A LOT." And this is what he did! He went out on ride after ride, stopping back at home to refuel with food, water, rest,  love, and support. And time after time, we sent him back out again as he wished, seeing a boy more and more restored. He returned more and more tired, thirsty, and sweaty, but triumphant. It was pure joy to see this strength of purpose and sense of being.

You see, he took back HIS community. He took back HIS streets. He took back HIS freedom and fun. He took back the fact that despite disabilities, he had the RIGHT to live his life. And he taught us to do the very same in the face of adversity.

So, to the punks that assaulted my son: you LOST. To the adults in my community: if you are a parent, grandparent, relative, neighbor or someone who cares about children, what can you do to break the cycle of bullying for any child? How can you stand up to adversity on behalf of children? How can you send a message of love and understanding? These questions should be treated, just like the boy who wouldn't stop riding. Keep riding, keep going, and keep going strong.

Thanks, Son.

 Kim authors Gritty City Woman where this post also appears, because, well, it has to. It also appeared in my local newspaper community blog (hence the last paragraph).

It is Our Life...

Reading a blog, and a post about the stresses of a mum, I was struck by a comment she made:
"And then I look around me and see how I don't have it anywhere near as bad as some others. And I think I should be grateful that he is healthy, (overly) verbal, mainstream schooled, intelligent, capable, wonderful, loving, helpful and all the other good things that make him who he is .. and I am grateful."  Read here.

It makes me think of a conversation I had with a friend a while back. It was during a very bad time with Boy 1, and I was at my wit's end. And so I talked to a friend.
MM: "I do not know what to do to help him, I am so worried about what he will do."
GF: "Look, I'll tell you something that will help you feel better. Our really good friends have a three week old baby after trying to conceive for years. Sadly, he has a serious heart issue and has to have surgery tomorrow. The risks are high and he may not survive it, but without the op he will die within the next few weeks.
MM: "And why would that make me feel better?"
GF: "There is always someone worse off than you, and it makes your problems seem less in comparison?"
MM: "It is sad, yes. BUT that is NOT MY son, and NOT MY life. It does not lessen what we are going through or help in any positive way. It comes down to what you live with, not what you hear."


We should never have to justify our pain/worries/concerns, or belittle their magnitude in OUR lives. Everybody knows there is always someone worse off than you (and wouldn't it suck to be the one with the WORST life on earth?), but that in no way relates to the emotions of our own lives.


So don't say sorry, or qualify the bad times, we get it. And we are here to listen, not judge.

blogs/rants over at Meaninless Meandering from a Madmother and is wife to Big Boy, mother to Boy 1 (Aspie) and Boy 2 (smart-arse), and daughter to Wise Woman.

Just Some Random Questions

Just a few random questions thrown out for discussion.

1. Recently, in perusing the cyber world on autism issues, I am seeing more and more adults on the spectrum themselves, that say that using the phrases high functioning and neurotypical, are not appropriate, and even, offensive. Hmm...The reason stated is that if you are considered high functioning you are NOT autistic but have some other condition. The argument for neurotypical is that NO ONE is neurotypical. We all have anomalies, differences, however small. No one has the perfect brain. So, my question: so then, what are we supposed to say? Are there some new words out there that I am missing?

2. Does anyone have the beat on the pulse of actual autism statistics? How many people are affected? I see numbers all over the map! What is the most accurate? When people ask me, I'm kinda taking a guess.

3. I am a part-time homeschooling parent (well really, we tend more towards the unschooling). Just looking for words of inspiration I suppose. How do you maintain your energy? How do you keep things fresh for everyone?

Okay, I'll admit, these questions are kinda big, but they've been circling in my brain.


Kim, who poses gritty questions right HERE on Gritty City Woman.

A Prayer for Sleep

I've been lucky when it comes to my kids and sleep. Sure, we had the typical rough few months with both of my newborns, but at four months old, we took a hard line. We sleep trained. We let them cry it out. We stuck to early bed times and a good nap schedule. And it worked. My kids learned to self-soothe and fall asleep on their own. Sure, we had (and still have) the occasion rough night for teething or stuffy noses, but most nights they slept twelve hours a night. My kids were good sleepers.

I tried not to brag about it at mom's groups meetings and playdates. While others were talking about their sleep issues, I tried to keep quiet about how good I had it. I would offer suggestions as to what we did, trying to sympathize but also feeling like there must be something they were doing wrong - something we somehow did better. Well, ladies, it's payback time.

The sleep monster has struck our house, and good. It started about 6 months ago. Moe, my 3 year old with ASD, started waking up in the middle of the night. We'd hear him playing, often giggling. He'd stay up for an hour or maybe two, and would eventually fall back asleep. I was a little concerned because it made it harder for him to wake up in time for his 8 am therapy sessions, but by the time I consulted with our OT on some strategies to help him get back to sleep, he had grown out of it.

Then, about a month or so ago, Moe started to have some trouble falling asleep. The behavior was similar. He'd giggle and shriek in his crib. He was clearly over-stimulated and it started taking longer and longer for him to fall asleep, sometimes up to three or four hours. Again, this made for difficult mornings. We consulted with our OT, made sure we had a 30 minute wind down bedtime routine, tried the calming techniques. Nothing worked, and after consulting with our doctor, started him on melatonin before bed. It works like a charm at helping him fall asleep.

Relief! Problem sovled! Right? Right?? Wrong. Now we have a new problem. Moe is once again waking up in the middle of the night and having trouble falling asleep. On three separate occasions - enough to qualify as a trend in my book - he has been up for over five hours. Yes, dear readers, my once-was-a-great-sleeper child is waking up at midnight and not falling asleep until five in the morning. I feel like I have a newborn again. I'm so tired I can barely remember my name.

Everything is worse when we are tired. Moe's behaviors increase and speech decreases. My patience and ability to look at things with any measure of perspective goes out the window. I crave chocolate chip cookies. It gets harder for me to hide the bags under my eyes. It isn't pretty. Oh, cruel and vengeful gods of sleep, I beseech you. I am at your mercy. Please, let this pass.

Jen is thankful for a full night's sleep last night (Kaynahorah puh puh puh, knock on wood). She writes about the joys and challenges of raising a toddler on the autism spectrum at her personal blog, Anybody Want a Peanut? Follow her on twitter @wantapeanut.