I Had To Have The Sex Talk With My Son And I Lived to Tell About It

I had “The Talk” with my son. We both survived, barely. He is twelve now, and I know what you’re thinking: WHY are you just now having this discussion with him? Do you live under a rock? Don’t you know what kids are capable of getting into these days? Do you want your kid to be a statistic?

Believe me, I get it. But you have to understand…I have tried to have The Talk with my son before this, many times. Each time, he politely rebuffed me.

My son has High-Functioning Autism. It is as the name implies. Some professionals call it Asperger’s Syndrome. It means he has trouble with social cues, reading body language, some processing problems as well as trouble controlling his impulses, like anger. He is easily embarrased, so it didn’t surprise me that he did not want to discuss his burgeoning sexuality with his mother. This is the kid who hides his eyes if I take him with me to mall and we happen to pass the lingerie store. There have been no shortage of attempts on my part to usher him into the ways of the world. He always swore he was not interested.

So when I found that he had been googling, “penis” and “breasts” I figured, protest though he may, it was time. I am a smart woman. I have safe search on, so he didn’t find anything except Wikipedia pages…no trauma. I get that kids, boys in particular, can be curious. I am just thankful that no damage was done! And I am also grateful that I have enough technical savvy to know how to lock down the computers!

So, how do you talk with your son about something you both find highly embarrassing without losing your mind? The answer, it seems, is just do it. Do not make a big deal about it.

Five Ways to Discuss The Subject Without Wanting to Run and Hide

1. Be as matter-of-fact as you can. Lay out the information without a lot of emotion, as though you were tutoring someone who speaks a different language. We are talking autism here. That is, after all, what you are doing.

2. Refrain from idioms, editorializing, and heavy opinion. All of these will be ignored by a kid with autism. He probably won’t get most of them, anyway. It is easy to get “on a roll” and end up losing the kid halfway through the process.

3. Don’t bother asking, “Do you understand?” He probably won’t admit it either way. Just lay out the information as best you can. If you are good at reading your child, you can elaborate if need be.

4. This is a good time to explain society’s views on women, respect, pornography…just try to do it without making the kid feel belittled. Did I like that my son googled body parts? NO. Did I tell him I don’t want him to do it anymore? YES. Did I make him feel like a bad person? Absolutely not. Kids need guidance, and that’s what I gave him.

5. Refrain from what I call “Aesoping” even though it is very satisfying as a parent. This is basically when you say, “I told you so!” Kids learn from their experiences. You can certainly point out the learning, but don’t rub their nose in it. That only serves to make you feel bigger than he is. One-upping a child doesn’t make us better, it makes us bullies. And with a kid with autism, it makes him shut down.

Don’t get the wrong idea. I’m no Pollyanna. It’s not all roses and sunshine around here. I was floored when I found out my son had been …exploring google. It wasn’t easy. But instead of making it about me, and my parenting, and what I am doing right or wrong, I made it about my son. Having a child going through puberty is difficult. I can only hope I have set the groundwork for my son, and that if he does have questions later he can ask instead of looking in all the wrong places for answers.

All in all, it was a painless process for us both. But I have to admit: I am very glad that I only have one son! Somehow, talking to the girls is just so much easier.

Tina has two children on the Spectrum and one who is a quirky teen. Autism Sucks is her brainchild. She also blogs at her personal blog, Send Chocolate Now.

It Definitely Sucks!

For most kids at 15 your world is all about your friends.  Your family sucks.  Your parents don't know anything.  They don't get it.  They don't get you.  High school provides a connection source.  It's the place that you find most of your friends.  You take some classes you hate, some that you love, but your place in the hierarchy of this place can define a great part of your life.  Your experience here, shapes who you become to a degree.

High school can also be a place of shear torture for many kids. Being bullied, feeling left out, ostracized, desperately wanting to fit in, but feeling like you don't.  When you have Aspergers, an extreme deficit in social skills,  and sensory issues, you can multiply that torture X's 10 (at least).

It's near the end of the school year and Red is done, he's ready to check out.  Unfortunately you can't just say, "Sorry people...I'll see you next year, maybe."  You have to get through it.  Suddenly his classes are too loud.  There's too many people.  He hates this teacher and that teacher.

The bottom line is he's tired of feeling like a little gold fish in a huge ocean filled with sharks.
He's tired of swimming against the tide.
He's tired of not having any real friends.
He's tired of being surrounded by people but not being able to connect with any of them.
He's tired of the loudness of the classrooms.
He's sick of the sensory overload.

So he comes home and goes ballistic.
He screams to the top of his lungs at a simple request of taking a shower.
He rages and rants about how horrible his life is.
He becomes more aggressive more angry with those of us who love him.
He is miserable and he wants the rest of us to join the misery party.
He pounds us with scripts and demands to buy him new things that he thinks will make him happy.
He has yet to realize that things don't make you happy.

Everything that is wrong in his life is somehow my fault.
I am the person who works tirelessly to find answers.
I am the one he thinks can make things better for him.
I am the person that he knows loves him unconditionally.
I always forgive him.
This gives him license to treat me like crap.

I keep it moving forward...trying to help him and my younger son, who also has Aspergers.
Therapies, doctors, social skills, medicine, advocating, ARD meetings, IEP's, BIP's, carpools, entertaining
I keep a smile on my face, trying to focus on my blessings.
I pray and see small victories, but can't help but wonder why I'm not seeing any miracles.

To every thing there is a season, and a time to every purpose under heaven -Ecclesiates 3:1

In my head I know this is true, but when your child suffers, it's hard to figure out the purpose of that.  Help me Lord.

Please stop by and visit me @ Confessions of An Aspergers Mom
I also invite you to "Like" my Facebook Community Page

How Do I Explain It to Her?

She's almost ten, and she doesn't understand. Why is she different? Why does she still love and need her stuffed animals? Why isn't she interested in boys, or Miley Cyrus or Ke$ha (shudder) or makeup or Abercrombie & Fitch? (not that I would buy her clothes there...ever!) Why is it so hard for her to read? Do math? Talk quietly?

Why do her cousins tease her for things she cannot control?

She's almost ten, and she doesn't understand. Why is it so hard for her to control her frustration, disappointment, anger? Why does she clam up when she gets really upset? Why do her words fail her? Why does she see a speech therapist, reading tutor and feel so "little" (her words,not mine).

She wants to be a big kid. She wants to do the things they do. Sleepovers, going to the movies with friends. After all, she's almost ten. She watches Nickelodeon and the Disney Channel, and though I explain until I am blue, blue, blue in the face that those kids are fictional, their life is not reality, she still aches. For what she doesn't have. Maybe won't ever have.

She's small. She still wears dresses almost always, and has since she was a toddler. It's just what she likes. But she wants to be older, and look her age. She needs help to brush her hair, hates to take a bath. Her self-care skills still need...coaxing.

She's almost ten, and she doesn't understand. Why autism? Why her?

I can't explain it to her. I wish I could. I am in my forties.

And I still don't understand.

Tina blogs here, and at Send Chocolate Now. Autism Sucks is her brainchild. Want to write? email her! autismsucksblog, just add gmail.com

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.

Whiplash!

Break out the neck brace, I’ve suffered whiplash, autism style.

Autism whiplash is a phenomenon in my household where my 11 year old PDD son has a “good streak” and then it turns bad on a dime. What constitutes a “good streak?” This is when there are LESS issues than normal and/or the issues that are experienced have a QUICK resolution. I mean, really, with autism, I’ve never had an issue free day with my son. However, if it’s a soft day, with less, that’s terrific. A good streak can last a day or two, maybe a week or two! Once I got the royal treatment with nearly a month! Wow! So, this is a good thing so far, right?

Yep, and this is where the autism gives me a gut punch. We are rolling along well and BAM! It’s like getting rear-ended in a car without warning.

Case in point. My son has a great deal of difficulty setting foot in the school’s threshold to start his day. Between the anxiety and quick anger, it is an ordeal. But sometimes, school CAN go smoothly. So, recently, my son had a good streak with getting to school and he was doing pretty well staying there. This had been for a week. My husband and I also noticed that he was having really good behavior at home (more cooperative, helpful, kind). We were feeling pretty good and hopeful. So, one day my husband took my son to school. This is a big treat for my son (because usual my husband is at work and can’t take him). My son adores his father and tends to behave a lot better for him, than me. So, hubby takes our boy over to school. Things are going well and the conversation is upbeat. Dad delivers son to teacher and notices that son has an odd look on his face. Without warning, our son attacks his father in front of school staff, starts hitting, and calls his father dirty names and was viciously verbally abusive. My husband was horrified (this rarely happens to him) and removed our son from school. Bad streak ensues. Exhaustion sets in. Hope sinks.

Whiplash.

The autism has pulled this trick on my son and our family on and off this week. Good streak and then snap, it’s broken. Usually it comes on quick and strong.

Let’s discuss. How do you fellow warriors cope with whiplash? How do you swim in the muck of a let-down?

Kim Thompson's blog, Gritty City Woman, is dedicated to bring out the grittiness in all of us!

At least there was cake

I started reading this blog when I first learned that autism sucks. Which was about 3 months before my son, nicknamed Moe, was finally diagnosed. That was almost a year ago. It still sucks.

This weekend we had my daughter's first birthday party. I couldn't stand the thought of more people invading my home (10 therapists a week is enough, thank you), so we had the party at Gymboree. I thought it would be fun and involve no work. I though that Moe would have a good time too. He's into climbing everything right now so that would be good. And he used to love it there when he was a baby and we had time to do things other than therapy.

Well, guess what? Autism sucks because it is unpredictable. Moe had a major meltdown the moment we stepped in the door. Fortunately, none of the other guests had arrived and he calmed down in a few minutes. He spent his time on the outside, bouncing on the trampoline in the corner or running around the edges with a juice box. Didn't even participate when it was time for bubbles or the parachute. For a while he obsessed over the drinking fountain until he couldn't find anyone to pick him up anymore. He exhausted his grandparents who were kind enough to chase him around the room so my husband and I could spend a little time with our daughter who is going to be one year old and deserved a day all to herself. So we could watch her eat her first bite of cake.

We call her Jelly Belly. She doesn't have a lot of friends of her own. We know a lot of people Moe's age, leftover from the playdates we used to be able to attend. They came, and some of them have baby brothers and sisters now, so they came too. Family and old friends came and there was a nice crowd. But any time the group gets together, I'm reminded of how different he is and we are. I'm reminded how much I love three year olds and how they talk and how they follow each other around the room in packs, looking already like teenagers. I'm reminded of how I've been robbed of that time with my little boy.

I'm reminded of how much autism sucks.

Jen writes about life with a baby girl and an almost three year old son with autism on her personal blog, Anybody Want a Peanut? She also really loves cake, something she and Moe have in common. You can follow her on twitter, @wantapeanut.

Life With Autism - A Mother's Perspective

I never dreamt I would grow up to be the sort of woman who cries at the drop of a hat. I always despised women who ride a huge rambling rollercoaster of emotion. Keep it to yourself - exercise a little self-control for God’s sake. Now I have joined this emotional little clique. I read an article this morning, sitting on the toilet of course – where else would I have the time alone to read, and I cried yet again. What was this inspirational topic? Another Hollywood celebrity discussing life with an autistic child. Autism is not selective. People from all walks of life are affected by it. An elite club you do not really know much about until YOU are invited to join. Even now, when a new member is revealed, I cry tears of empathy, grief and relief. I will have another congenial companion on the journey, they will understand. At the same time, my heart breaks for the path I know they will have to tread, the challenges and compromises they will have to consider on a daily basis.

It is quite ironic emotions erupt from me when the catalyst is a disorder associated with the lack of emotions. I now know that this impression of autism is incorrect. People on the autism spectrum still have the same gamut of feelings but react and reveal them in a different way to the average person. Every child on the spectrum is an individual so the disparities are endless.

How would I describe my son? He is eccentric, unique, pure, complicated and has Asperger Syndrome. He is emotionally challenging, heart warming, and eminently loveable. My prayers are that he is happy and content in his life. I dream he will marry, have kids, follow his dreams, fulfil his potential. He is angelic of face, volcanic of nature but only those who witness him in full meltdown see those masked eruptive depths. Generally, people use the despised phrase: “he doesn’t look autistic, does he?” How, exactly, are they meant to look?

For a parent, those four words: “your child has autism” is paramount to someone telling you: “sorry, you have a terminal disease.” The phrase has a terrifying fatal ring that you did not see coming. Pow, take that. It is ironic that Time magazine nominates autism as the only condition equivalent to cancer in its genetic complexity. Initial reaction: it is a joke, right? Not your child, he talks and is loving! Don’t autistic kids sit in a corner barely emoting let alone being verbal? Must be a mistake, they have to be wrong!

Your whole view on life changes, not in a split second, but gradually, little by little, as the implications of this diagnosis kick in. When a child is born, it enters into a world of parent ambitions and dreams. When that child is diagnosed with a disability, it is the parents who grieve for their lost hopes and aspirations. It hits you in stages. Disbelief, grief, acceptance, survival.  Like a reformed alcoholic following the Alcoholics Anonymous guidelines, we follow our own AA path: autism awareness.

Enter the minefield of lovely, helpful professionals. Sadly, a high number will bombard you with worse case scenarios accompanied by literature to terrify, or else offer no assistance whatsoever. Expect you to mine through the fields and find the hidden cachet of therapies and support. A secret society who will not tell unless the parent unlocks the concealed code. It is only once progressing through the system you learn to become ruthless and track down the rare professional who understands, still retains some compassion in with the professional detachment. Don’t get me wrong, we have encountered some wonderful specialists along the way, but why have we needed to fight to find them? We are exhausted by dealing with our children and their issues, and then are expected to have time and energy to intensely research or discover the many alternatives?

As parents, a pervasive, encompassing loneliness engulfs you. Like two shipwreck survivors, you cling to each other, reassure each other, and sometimes loathe each other. Too down beaten even to try to communicate with external connections, friends fall like flies. The child becomes the centre of your focus – the marriage just has to coast along under its own steam. Time is in such short supply to even shower seems an unnecessary waste. The internet and its wealth of knowledge becomes a constant lure. Conversation revolves around droplets of information to be shared. No wonder so many frailer marriages implode under the pressure of a special child. Thank God, ours has not. Thank God, we both follow the same path. Thank God, we still love each other enough.

In the dead of a long, dark night I once wrote:

“What can I say to people to let it out? They say how average, normal he seems but they don’t live it. The fights, struggles, mood swings – his and mine. And the questioning of how much damage I am doing to his brother. How wrong am I getting it? The doubts, anger and frustration of living day to day. The struggle to do normal things like taking a family break. He told me today “I will kill you” and he probably will, somehow, sometime; the heart attack or stroke from the stress, the gun when he is older and angrier… the alcohol I use to feel better... or not to feel at all. So now I sit, unable to sleep; and type and cry.”

This is still my reality though not all the time. My son makes me proud in so many of his actions, methods and beliefs. These special moment keep me going, hold me on the path we have chosen. So many different therapies thrown at you, to pick a direction and stick to it is fraught with uncertainty and doubt. What if it is the wrong choice? What if I am damaging his fragile psyche and another choice would have smoothed his life for him? The consequences could be tragic if we get it wrong. Think Columbine or Arizona Tech. The frustration and isolation that erupt into violence, a newsflash revealing a frozen glimpse of a parent’s greatest fear. My greatest fear. How did their mothers feel? The pain and questioning. What did they do wrong? The unbearable guilt and shame mingling with the overwhelming loss and grief.

I second guess and doubt my choices already. It is easy to feel that a decent mother would be able to fix things for him. No matter how many times I am told otherwise, I often wonder if I did something to cause this. It is so much harder because I swim against conventional thought. MY child. Don’t they get it? MY child. Nobody on this earth understands him the way I do. Not even his father who acknowledges the truly unique, special link I have with my firstborn. His little brother probably understands him well, but still not that iron, heat forged, binding chain we share. Yet I am probably the toughest with him. I have never subscribed to the school of “poor me, poor him”. I have never allowed the boundaries to differ in relation to both my children. My oldest has to live in the real world, thus he has to learn to cope with the real world. Some mothers think I am harsh. Some mothers think I am obsessive. Some just think I am delusional.

Many education professionals cringe when they see me coming, or if my name is mentioned. One very senior special needs educator said: “you are an overzealous mother who is causing her child undue anxiety and stress by your attitude. He cannot learn and you will scar him with your belief otherwise”. Most present believed he was right. I wonder if that man considered how he was scarring me with that comment. Years later his words still taunt me in the sleepless 2am worry sessions. But time has shown how incorrect they were. If only I had the energy to track them all down to flaunt his school report cards.

The tragedy is we are meant to rely upon these “special” educators, these experts. Those on the front line, the teachers and aides themselves, have allied with us. Former principals pushed boundaries for us. For this, I am so endlessly grateful. They put their hearts into helping my child, but are often bound by the ridiculous ideas and limits placed by the so-called specialists. I despise some of these authority figures. What was it Mark Twain said? “In the first place God made idiots. This was for practice. Then He made school boards.”

I try not to compare my children. I leave that to the school system. In the household where I grew up, we were treated as individuals. Comparisons were frowned upon, the phrase “why aren’t you more like your sister”  never uttered. I have always told both my children from birth they are unique, special, different. It is heartbreaking to see the way society likes to knock us all into the same monotonous shape. Especially the school system – submit or leave. Comparison is the name of the game. No wonder home schooling is the greatest growing teaching mechanism in the developed nations. I hope both my children survive the educational world with some eccentricities intact. Conform to cope, not to become the round peg. Have the confidence and self-belief to embrace their differences, but still be accepted within mainstream society.

Writing is an ordeal for my son due to his fine motor problems. In this day and age, you would think the system would get it. He will never be comfortable with penmanship, it tires him beyond belief. Most autistic children have low muscle tone, which affects both fine and gross motor skills and it is made more difficult because of the pressure he places upon himself to be flawless. Did I mention that these kids are perfectionists? He prefers to refuse to attempt a task so overwhelming is his fear of failure. This is why I have framed the first Mother’s Day letter he wrote me at six years of age. My close friends cry when they read it on my wall. They know exactly how hard it had been for him to write this, equivalent to another child writing it in blood. The last line in it is “You are very special because you always save me from falling.” When questioned about this line, his reply was “you always save me Mummy, from falling sad, from falling mad, from falling over.” My son. Who believes Mummy will fix anything. I have to live with the knowledge that I will not always be able to save him from falling. I will not always be there when he falls. And so I have to give him the tools to be able to pick himself up, dust himself off, and keep moving. Physically and emotionally. Is it any wonder the pressure pulls me down at times? In my life there is a constant undertow of emotion, ready to drag me under at my first sign of tiring. But if I go down, he goes down, so I swim on.

My child has the typical autistic sensory issues: smell, touch, taste, sound, sight. Like a superhero, these are fine-tuned to hypersensitivity. Makes for fun on any day, is excruciating on bad days. You know he cannot help it, but it is the whinging that wears you. Oh God, the whinging. If you think all kids whinge, then multiply it by 100 and you have life with an autistic child. These children are the eternal pessimists of life. I think Murphy was autistic (you know – the one who wrote “what can go wrong will go wrong”).

It is probably why I joyously revel in my child’s cheekiness. To hear my son use sarcasm or throw a witty comeback makes me glow with pride. ASD children do not have usually this ability. Everything in their world is factual and literal. When his teacher says “good day, no hiccups,” he looks at her in bewilderment. “I didn’t have hiccups today or yesterday or at all last week.” Why would his teacher mention hiccups? He really does not get it. So when I hear him say, “you punch like a girl” or twist a word for a wholly different meaning I know we are slowly winning the battle. The anthem I can hear in the background right now is music to my ears. “My brother’s a pinhead, my brother’s a pinhead.” The chant of a champion. We struggle to teach him the things other kids just seem to know as they get older. I do not want him to lose who he is, just make the journey easier throughout life. And to do this he needs skills that others take for granted. If only I could transfer some of his younger brother’s excess to the older.

What do autistic children born to demure mothers do? What happens to the children diagnosed with autism whose mothers do not know how to fight? The reserved ones. Do the mothers learn to fight? Do the children become self-sufficient? Or are these the children who fall between the cracks? The system fails them, then Mum does. Future massacre perpetrators. Terrifying. Heartbreaking. Tragic.

I am by nature a doer, but battle has now become a way of life. I fight my son every day. "Eat breakfast. Please eat breakfast. Son, you will run out of time, eat breakfast. JUST SIT THERE AND EAT BREAKFAST! Get dressed. Please, get dressed. Just get dressed. SON GET DRESSED RIGHT NOW OR I AM TAKING YOU TO SCHOOL NAKED! No Mummy is not trying to cause you stress by yelling. Son brush your …" Well, you get the idea. Sadly, the biggest campaigns have been waged against those who are meant to be our greatest support. The medical and educational specialists. The burnt out ones, I call them. They look at you as if you are an illiterate idiot, or an obsessive parent in denial. Don’t you understand? Your child has autism, it is not curable!

I know the diagnosis. Disbelief and grief were dealt with and conquered. We had to or the family will remain in an endless limbo. Acceptance and survival are far more complicated, and the impossible is discerning what his reality and potential may be. Exactly who gave these so-called masters a crystal ball? I want one! They are so positive of the outcome for MY child, so definite in their projections. There are so few who understand our plan, who bolster and cheer us on. Give us the positive reinforcement we so crave. Why can’t more of these professionals realise how much we need to hear those few words: “You have made the right choice.” It is not that hard to say!

I do NOT accept the restrictions and the doubt imposed on my child’s abilities. I know what he is capable of. I am aware that many things will not develop with maturity and age if we do not intervene now. Therefore we do. We give him the grounding he needs to become a happy, fulfilled adult. Teach him to use his own judgement to overcome the obstacles. To make the best choices, not the worst. He has already far surpassed what these people predicted for him in the early years.

The internet becomes addictive when you have a child diagnosed with autism. I grasp onto little bits and pieces, ideals and ideas, beliefs and gut instinct. Weave them into our lives. Our path. Our way. Our desire to help him be whoever and whatever he chooses. OUR WAY. The World Wide Web can be your greatest resource or the most insidious tool in the universe. Who was it who said, “A little knowledge is a dangerous thing”? So true. The search for information and ideas can backfire when you stumble onto the horror stories from armchair experts who prophesize doom and gloom for the child.

I have a signature underneath my username. “Please don’t annoy me, I’m running out of places to hide the bodies…” The original was actually a bit stronger than this, but I adapted it to be a little more politically correct. Just to warn some people I meet on the internet highway that I am a lioness protecting her cub, the warrior queen using my wit to take down any enemies.
It is terribly amusing that I am writing all this. Baring my soul, ripping off the scab from my heart. I try not to ramble on too much about him. People’s eyes glaze when I am spilling too much. Therefore, I do not. It just seethes in the pit of my stomach until I get through it, or until I purge it all on the internet to my close coven of friends facing the same battles. Yes, we do actually call ourselves a coven or sometimes a clique. A clique where nobody ever has to fight for membership. A group of emotionally turmoiled mothers grasping hands, baring souls, trying to bandaid the wound. I sit, and again I cry. This time with gratitude that these special women get it. I can stop fighting and breathe. Just for a moment.

otherwise known as Tanya is an Aussie blogaholic. She has four blogs of her own, but can be mainly found randomly rambling at Meaninless Meandering from a Madmother. A mother of two boys, her oldest son, now 12, has Asperger Syndrome. She really has a yearning to write, and one day she hopes it may be more than just Madmother mouthing off.

Mommy meltdown

Today I cried. I had finally had it. Having children on the spectrum really sucks, and I have gone on for so long with just “dealing with it” every day that it finally happened. Mummy meltdown. Not to have a poor pity me session but seriously it was bound to happen. How long did I think I could actually go on here with 6 children, no help, and two on the spectrum?

Granted there are other children who have far worse disabilities, but here in this household it is bad enough. The worse thing about having a child on the spectrum is that the do not look like they have a disability. They look so typical. But back to the mummy meltdown. It was probably brewing over March break as each child came down with a nasty stomach bug, one after the other. So when it was back to school today I was glad to be back into the regular routine.

However, my Joshua had a rough time getting back into the school thing and didn’t want to go. I finally managed to get him into the truck and over to the school, but once there he put up a terrible fight and wouldn’t get out. I had to call out the VP who fortunately for me is a great guy and totally gets Joshua. So after about 15 minutes of Joshua screaming, kicking, hitting and trying to run off, the VP managed to get him under control and into the school and so I left.

Then I cried. Hard. The flow of tears felt like it would never end. For half an hour I allowed myself to scream “why me?” I allowed myself to yell at all those ignorant people who claim Autism can be cured by diet, or other things that only give us parents false hope. I allowed myself to feel the guilt and shame that comes along when my son chases the garbage man in his truck down the street screaming for him to give back his stuff, or when he has violent outbursts, or when he has a meltdown in the grocery store. I allowed myself to feel guilty about not being able to spend more quality time with my 4 typical children because Zak and Josh require me 24 / 7. I allowed myself to be me, not the supermom people think that I am.

Then I stopped. Wiped away the tears. I am a wife, a bitch and the biggest advocate for all of my children. I am a momof6 who only has time to feel sorry for herself for about half an hour, once a month or so. Times up.

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ONE LONG DAY

When I had my first child, thirty years ago, I was still a child myself. In fact, I think I still was when I had my third child eight years later. I made mistakes along the way but I always loved being a mother. It was the most fulfilling and rewarding thing I had ever done with my life. When my children grew up and moved away, I felt empty. I felt as if I no longer had purpose in my life. So, seventeen months ago at the age of 46 and with an ailing husband and a few health issues of my own, my husband and I became foster parents to an eight-month-old boy. Because the father is a relative of mine, I knew the history and knew that our foster child would become our child. What we didn't know was that he would be diagnosed with Autism.

Despite his diagnosis, we love Matty and we adopted him on November 20, 2009. At that point, he had lived with us for 13 months. We really didn't think that raising him was going to change much in our lives. Because of my husband's illness, we had already stopped doing many of things we previously enjoyed. We actually thought that having a baby would be a fun new life for us. (We both had children from prior marriages but none together.) We even thought that having a laughing happy baby would help my husband to feel better. Give him a new and bright focus so he wouldn't dwell on his iron lung. And you know, for a while it really worked. But, Autism changes everything.

When you think you know all there is to know about Autism, you have a lot to learn. Anyone who says that he/she knows all about Autism is a liar. Autism is a mystery. It is an unpredictable series of who-knows-what. Every day is so the same yet so very very different. What the Autistic child loves one day can throw him into a total meltdown the next day. Things we take for granted; eating, washing, sleeping, become an issue.

Mealtime. Once upon a time, this was the most pleasant part of the day. Now, it's a thing we fear. If the food doesn't look right or feel right, (yes, I said feel right because he must touch and squeeze and lick every item on his plate.) he won't eat it. The few things he will eat wreak havoc in his over sensitive belly. He won't eat cereal but rocks are great. He won't eat rice but lint is wonderful! This leads to the next issue SLEEP. I remember it, I miss it, and I long for it! I think at this point I may even kill for it if I had the strength and wasn't in so much pain. But, when Matty doesn't sleep, no one sleeps.

Our days begin at 6:30 AM. We strive to keep life as structured as possible for Matty because any change is apt to drive him into himself and cause the day to run on into the wee wee hours while he tries to sort it out. For example, Last week, we had a visitor just before dinner. It was a family member that Matty has only seen a few times and she only stayed about an hour. Matty withdrew during the visit then became very cranky at bedtime. It took two full hours of walking and rocking his 35 pounds to sleep that night. That was a minor thing. Christmas week was one looooong day for us. But that’s another story. A structured day for us consists of keeping meals, snacks, naps, and playtimes at the same time every day. Except for the one hour of therapy Matty gets each week, we are alone. From early morning to after dinner it is two old people chasing this child around trying to keep him safe from himself. He is obsessed with anything dangerous; stairways, outlets, climbing onto windowsills, tables, bookcases, and lately the shelves of the entertainment center too. A simple “NO!” does not divert him. He ignores all verbal commands and seems to know that we can’t get up fast enough to stop him on his path of self-destruction.

Afternoons on good weather days, I take him outdoors where I stand over him pulling pebbles out of his mouth or stopping him from pouring sand into his ears. He does fine in his stroller, sometimes for a full ten minutes! Back indoors while I cook a meal, my husband tries to keep him entertained but all he wants is to stare at the television and throw his toys. Oh, the toys. The money we spent on toys and all he does is look at them and throw them. He is not content until every inch of the carpet is covered with toys. The scattering of toys makes it harder for us to stumble over as we rush to pull him from an outlet or from bobbing for bubbles in the potty. After dinner and a bath we begin the bedtime battles.

Matty has decided that he hates bedtime. We used to put him to bed and he would play happily there for sometimes up to an hour before falling asleep. But not anymore. For the last several weeks we lay him down and he cries. Then, he begins to scream. We begin taking turns rocking him. First in the rocking chair, that lasts about two minutes, then up and walking. We can tag-team this task for up to three hours per night. Or, he falls asleep after only an hour then wakes up later and starts the screaming routine and the tag-team task then takes up to FOUR hours.

No rest for the weary. The stress of the ordeal has caused me to tear some muscles in my arms. The pain of that rivals the pain of my fibromyalgia and the severe arthritis in my neck. I often do this rocking in tears. But I push on because my husband can only go so far (and he ALWAYS goes too far) before getting short of breath. But, it isn’t all bad. Matty is on a waiting list for day care and if we are still alive in three months, we will finally have a break! We are dangerously close to burning out now. We have no help what-so-ever and we just pray we will make it another three months and that no one will come along and push Matty back on the waiting list. We are so tired. Our marriage is struggling. Our health is deteriorating. Our hopes are fading.

You may ask, how does one love a child like this? Going along with the puzzle that Autism is, …you just do. Because of my limited me time, it took four sittings to write this all down.

Why Can't I Teach My Child Self-Control?

the following is post from my personal blog, dated two years ago.

Trying to teach any child self-control is tough. When you are dealing with a child with autism, there are added challenges. It isn't that they can't learn, they do. It's just that with autism, often learning takes the form of rote scripts that are hard to apply to situations that deviate from the taught scenario. The ability to adapt just isn't there. I tell you this so that I can tell you this story.

Last night, J and I wanted to go out. We don't get a lot of opportunities to do that, because even though I have given birth to the World's Most Responsible 14 Yr Old, let's face it, leaving her in charge of two younger kids with autism is something to question. But last night, my littlest one said that J and I needed to go out. You need to understand that she was falling apart earlier, not so much in a catastrophic way but more in a "I am really whiny and complaining about everything" way. The Wii can do that to all of my children. Hell, it can do that to me!

JBean was trying to convince me that we needed to let them stay home. We were planning on a late movie, so there would only be an hour that the kids would be up. JBug puts them to bed for us. To assure me that I was making the right decision, JBean said:

"Momma, I can do what they taught us in Sunday School today... SPUD.
Self-Control
Pause
Understand
Decide

I can control my self!"

Most parents would be thrilled by this. Instead I took it to heart as my failure. When you homeschool, everything is your fault. I said to to J, "I have been trying to teach her this stuff for years, and she picks it up in five minutes in Sunday School? Maybe I need to send her to school to learn, because she isn't getting it from me. I'm failing." He looked at me and said, "She got it today because you have been going over controlling herself over and over again. Repeat, repeat, repeat. It clicked because of you." My eyes filled with tears, and I spoke..

"That was the right answer."

T, who takes it all too personally

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 LA Special Needs Kids Examiner at Examiner.com and her own site, Send Chocolate reflects her passion for her children and autism. She is the founder and editor here at Autism Sucks.

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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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Coming Home

Today was the third meeting with our architect as we continue the initial stages of building our dream home. Interestingly, at this meeting there was cause to disclose my eldest daughter's special needs as we discussed the functionality of our house plans for our kids. At the end of our meeting, the architect shared with us that he too has a special child. It is always amazing to see the shift in relational dynamic that occurs when two people, almost strangers, share this one bit of information. Suddenly, doors open into each others' lives and mutual understanding and empathy flow forth. As a parent of a child with special needs I notice an unspoken camaraderie, or a "Club" so to speak, with other parents in similar situations. No matter what the diagnosis or functioning level of your respective children, there is that immediate bond when you hear another parent's story or see them struggling at a restaurant or store with a child that reminds you of your own. An instant understanding. A deep connection. It crosses oceans, creates bridges, connects continents, transcends dialect, race and creed. It is unspoken pain, unspoken love, unspoken relatedness. I wonder sometimes if we parents, as a result of not quite "fitting into the norm," are trying to find and/or create some kind of community within the larger society. A community where we don't have to explain ourselves, where our child isn't stared at or worse - NOT stared at (you know, when people too politely avert their eyes). As the mother of both a "non-typical" child and three "typical" children, I always have one foot in one planet and one in the other. Dual citizenship. I straddle the galaxy and it never ceases to amaze me how both close and far away these worlds are from each other. The ability to live 2 parallel lives poses challenges as well as offers great reward and a sense of balance to a once lopsided existence. My oldest, afflicted with serious seizures at 4 months of age and diagnosed with Autism and "Mental Retardation" at age 2, was my only child for 10 years. For a decade I was a Mom, but didn't feel like I could relate one bit to the mothers around me. My life was filled with Physical, Occupational, Speech Therapies, private and county intervention, music therapy, neurologists, endocrinologists, cranial sacral therapy, secretin infusions, DAN protocols, visits to specialists, travel to conferences, and thousands of hours logged onto the Internet researching and on my knees in prayer. I was not on Planet Typical... the planet of regular Mommies doing regular parenting things, but rather orbiting in its atmosphere, desperate yet fearful to land. It's interesting because I have met some of the most wonderful people in the line at Baja Fresh, in an ice cream parlor, or by visiting each other's blogs from hundreds of miles away. We have crossed paths and bonded through the gravitational pull that draws special needs parents toward each other. I think when we meet someone who travels our path, who prays our prayers, who picked up the pieces of our same shattered dreams, who rebuilt our same new dreams, who revelled in new joys, who feel our pride and rejoicing, who cry our tears, who live on our planet, we breathe a sigh of relief. The relief of not needing to explain ourselves or our child's different behavior, appearance, or needs. The relief of speaking our own language. The relief of not having to give explanations. The relief of being released from orbit, even if just for a little while, and feeling the warm soil of our Homeland. Alicia D. has essays to be featured in the upcoming issues of Today's Caregiver and Autism Spectrum Quarterly. She can be found blogging about raising her four girls, one with Autism, at Welcome To My Planet.

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

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!*

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.

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.

T.

How I Got Here

I haven't know for very long that my son has Asperger's. I always knew in my heart that there was something inherently different about him. From the day he was born he was more intense, more demanding, and nothing that I thought I knew about parenting applied to him. 

Not that I knew anything about parenting. I was a 28 year old married woman, who had tried unsuccessfully for a very long time to bring home a baby. Finally, with him I was bringing that long desired baby home with my husband, and amid the fatigue, pain, and joy there was sheer and resounding terror. What on earth was I supposed to do with this little person? What if I screwed him up? What if I broke him? 

I managed to learn all that you learn in those first few years. Through the meltdowns, tantrums, hysterics and head beating on concrete, I pretty much resigned myself to the fact that I was raising some sort of spoiled homicidal maniac. When we were asked to leave co-op preschool because he was having trouble submitting to the environment and other kids, (I think that the teacher secretly drugged those other kids to get them to be SO GOOD) I knew that it wasn't just my parenting. 

We visited the doctor and I discussed all of the problems with behavior, and the obsessions which are above and beyond what is normal for any person, and where I was at emotionally handling this all. He confirmed that it probably was a form on Autism and that we needed to see a neurologist to confirm it all. 

After getting that diagnosis I analyzed everything. Had I missed something? Was I overlooking something? What did I not see? The truth was that Asperger's really isn't that obvious, and until we had the concrete pile of evidence we couldn't look back and compile it all together. 

Now here we are almost in July, of the following year, and he is doing better. I still deal with complete and total meltdowns over things that seem absolutely absurd to outsiders. People that don't understand Autism or Asperger's always seem to comment about how he is "fine" or looks "normal" little do they realize that it isn't a disease that you can't see.  

I know that he will never be a "neuro-typical" child. I also know that he is brilliant, funny and amazingly tuned into things that most children don't have a clue about. Are there days that I would trade that because we are amid what seems like a never ending stream of chaos and insanity? I sometimes think that I would, but the truth of the matter is that I wouldn't. I wouldn't trade a single second of this chaotic madness that is my life for anything.

To read more about my CRAZY life, thoughts and views on Asperger's, Coffee, Anxiety and more head over to my blog Momma's Tantrum. I post there every day, or pretty darn close to every day. 

Welcome to Autism Sucks

Hoping this blog will have multiple authors, all about autism and how much it sucks. Mostly, it was inspired by a friend who was feeling alone. I know there are a lot of us out there, so let's band together and support one another.

My vision for this blog is to have anyone who wants to write about how it is to live with autism. Just email me (link located in sidbar) and I will add you.

..or to make sure I get it quickly, leave it here, in the email at the top of the sidebar: Send Chocolate


T, who is there in the trenches with you