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.
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
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.
Shaking inside, walking around the house as a madwoman. Yelling at anything crossing my path, tonight...my poor dog. My big gentle giant seems to just be in the wrong place at the wrong time....again and again.
Why...why cant my son tell me where it hurts, Why cant i get across to him that I'm only trying to help.
Why does this damned fever keep coming and going, and why doesn't he want me?? He wants daddy, and he's sure to let me know.
Shaking inside...pacing about...."why is the frigg'n air not working again?!" This then leads to....finding and picking out everything i HATE about my house, forgetting all the things i love about it. "You know what the problem is i bet...plumber told you to leave the vents open, you didn't" Of course i know its not my husbands fault its just part of the cycle, these events hurt everyone.
Why....the hell does he still love me??
Does he?
Tonight....tonight is a bad night.
My son needs to see a doctor and I cant take him. Three of us holding him down and still no exam could be preformed. He needs an exam badly. "ouch" grabbing various areas of his body...lately his genitals.
Tonight, i feel so lost.
I feel inadequate as mom.
I feel undeserving of love..
I feel undeserving of this rant. This is nothing....nothing to so many, yet tonight...for me, this is huge, and i don't get it..
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.
Here in Melbourne my son and I attended our first World Autism Awareness Day march, from Autism Victoria through the streets and up to the steps of the State Library, on April 2.
For the first time in a long time I could see a difference in my son as he looked around at the mass of people thronging on the nature strip in Drummond Street, Carlton, awaiting the signal to start marching.
I kept a tentative anchorage for him by lightly rubbing his back now and then, to reassure him I was there if he needed me; at one point he actually turned to reassure me that he was fine, thank you very much.
I looked at him and realised there was an inner glow, a lightness and happiness to him that I had not seen in a long time.
It took a few seconds for me to nut it out but it was so simple; he wasn't the odd man out in a crowd for the first time in years.
How often is it drummed into us parents to assist our kids to integrate with neurotypicals, to have them socialise with them as much as possible to get the old 'monkey see, monkey do' happening with social behaviour, yet somewhere in following the rules we kind of miss the message our kids need to know they aren't the only ones who think, process, talk, walk, just plain are different.
He proudly marched with others, he shared smiles and grins, moving out of the way for mothers with prams, returning waves to strangers who stopped to watch and wave to the marchers but the most compelling, the most empowering thing for him that day was to realise for himself that he was a part of a whole community and not just the novelty Aspie geek kid.
Next week he attends his first Aspie teen social support group and he's almost bursting with excitement to just be another face in the different crowd.
Cos the different crowd rocks.
And it will keep on rocking throughout May as Autism Awareness Month in Australia.
Ro is from Australia; she has a partner on the Spectrum and is the mother of a 13 yr old homeschooled Aspie teen studying at University, both of whom have recently given her permission to blog about their challenges with multiple diagnosis' alongside Autism at Get Over It...I did.
Here in the land of Oz, the sun has risen on World Autism Awareness Day. Also known as Good Friday. A happy Easter to all, and may your awetism filled lives be happy and full of love and joy.
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.
Screeching ten-year-old power walking up dusty dirt driveway.
“I am leaving. I am never coming back. I don’t trust you anymore. You are a cruel Mummy.” Tears track down dusty damp cherubic cheeks. Silver trails in the grime. I am a failure as a Mummy. Boot me off the P & C committee, I am not worthy. Do you really want to know my transgression? I’m not cooking the baked potatoes quickly enough. What sort of a woman would do that to her starving child? He hasn’t eaten since morning tea an hour ago at least! His world is broken, yet again.
Hysteria reigns in our household. Overreaction is the norm. Having a child with hypersensitive sensory perception who is prone to extremely strong excessive emotional outbursts is challenging. To say the least.
Back to screaming child. I am tempted to let him go just to see how far he’d get. We have a five hundred metre driveway so he has a fair distance to ponder his decision. When he was younger he would get right to the bit before he was out of vision. He’d walk in place, too scared to be out of sight of Mummy. At this older stage he seems quite capable of following through. So I go to him.
“Do you think you might be overreacting a little?”
“Yeeeeeeeees,” quavering voice nearly breaks between sobs, “but you say sorry Mummy. I’ll say sorry too.”
I’m stubborn. My will wars with common sense. Pick your battles woman, if you have learnt anything on this rollercoaster it’s to pick your battles. But I DIDN’T do anything wrong. The child in me can rear its ugly head at the most inopportune moments.
“Sorry baby, let’s go back to the house.” Trust restored he allows himself to be led back to sanctuary. Life in an autistic world.
Life In An Autistic World is a series of short articles on how Boy 1's world collides with mine. A slightly humorous look at quirky everday life in the world of a family affected by ASD. Madmother can also be found randomly ranting at Meaninless Meandering from a Madmother.
Curled up in the foetal position is my five-year-old son. He is softly crying.
“I want to be dead.” He means it. It is devastating when your baby falls into the black hole of depression. The paediatrician had warned us when he was only three-years-old to watch for the signs. Three? Shouldn’t a child be consumed by dreams of The Wiggles or even the dreaded Teletubbies? Not death and darkness.
I wander nearer to the prone figure on the floor. Sniff. Sniff again.
“Ooh, he’s starting to smell. Urrggh better put him in the compost before he stinks the house out. Oh no, the worms are coming, the worms are coming to eat his guts out”.
It is at this point his stricken face starts to change. Mouth quivers and corners begin to flicker upwards. Tears diminish. I look to his four-year-old brother. We are a tag team united in dissipating the black cloud engulfing the shape on the ground.
“Can you take the legs? He’s too big for me to carry him all by myself.”
“Mummy, do I have to touch him if he’s stinky?” Mischievous long lashed eyes peer at body at his feet. He knows this routine and joins in gleefully. Born performer or moulded by life?
“I’m not stinky! You’re stinky!” Crisis over. Giggles erupt as brothers war over who won the smelly championship.
I often ponder what happens when these special kids have mothers without humour. My warped sense of absurdity has been my most effective weapon in this battle against anxiety and despair. I thank God and my parents for encouraging my twisted quick wit. Another battle won. His angelic smile beams back at me, shadows forgotten. For the moment. Life in an Autistic world.
Life In An Autistic World is a series of short articles on how Boy 1's world collides with mine. A slightly humorous look at quirky everday life in the world of a family affected by ASD.
When our first child was born, we were the same as most new parents: filled with love, hope, joy and dreams for our son. Little did we know that God had planned a very different journey for us. Far from the smooth highway we veered onto the rugged back roads and broken dusty trails. The first of the section is fact. The second part, in blue italics, contains the less rational emotional journey.
The Early Years Birth to Three Years of Age:
High Blood Pressure last trimester - medically controlled by Labetalol. My mother-in-law suffers a cerebral haemorrhage when I am thirty weeks pregnant. We travel interstate to see her and land smack bang into family politics, making life nasty and hellish. On our return, my previously perfect blood pressure has skyrocketed through the roof. Rushed off to BP specialist and medicated. Weekly visits. Informed it is MY BP, not pre-eclampsia.
Admitted seven days overdue, blood pressure dangerously high again. Controlled, induced ten days over. Twenty-four hour labour, attempted forceps, foetal distress, meconium passed not inhaled, emergency caesarean section. Blue baby. Apgar four at birth, nine at five minutes. I cope, after all that is what women do. I have run the gauntlet and survived, and so I cope. And thank God for a brilliant obstetrician without whom we both would not have survived.
Slightly jaundiced baby. All well within 24 hours. He is cute, but I am waiting for this overwhelming rush of maternal love. It finally kicks in around Day 3, about the same time as my milk. And the tears. Then I get mastitis. Twice. Gotta love this gig.
Early childhood nurse picks up torticollus and craniosynostosis (or cranial stenosis as it was back then). Turns out he was wedged like a cork in my pelvis the last trimester which resulted in weakened muscles on one side of his neck, tightened on the other. Craniosynostosis/Craniostenosis is when premature synostosis of cranial bone sutures occurs, normal head growth is inhibited. Various characteristic anomalies of the head develop as a result, and in extreme cases, the development of the brain and sensory organs is hindered. Google is not my friend. My baby may have to have the sutures in his skull cut open. His forehead is pushed forward on the left and his skull is flattened at the rear. His brain is being crowded. He screams in terror when they lock his head into position to take an x-ray. I cry.
By twelve months old, (when I am two months pregnant) we are given the all clear. Physiotherapy, posturing, tummy time and sleeping position regulating has strengthened his neck muscles, allowed the pressure to be relieved on the flattened plate of his skull, and the bones to realign. It is pure luck that the plates have not fused. We rejoice that our gorgeous boy does not need surgery on his delicate skull. I did not know how I was going to handle it if they had said "surgery". All the tears when we made him lie on the side he was not comfortable in, all the battles when he tried to roll to the other flat side were worth it. He is going to be okay.
He starts saying words quite young. The ECN does not believe he is saying "Mama" at four months, she says he is babbling "Mumumumumumu". Until he does it in front of her. Until he deliberately and clearly calls Mama when I leave the room. Looks for me. Waits. Then yells quite annoyed: "MAMA!" She also denies the night terrors in a child under 12 months old. So we video them. Again she admits her mistake. By twelve months, he has over thirteen words including a favourite: cheesestick. Sentences are being formed. He is a joy, and apparently quite forward in his speech according to the ECN. But he is lagging in the physical development side, but we are told not to worry.We can only stop the terrors by latching him onto the breast. I feed to thirteen months when I am nearly through my first trimester and sick as a dog.
He is a very Mum focused child. Clingy, but a happy, laughing boy with it. Sleeps through except for night terrors sometimes. Captivates many with his engaging smile. Loves blowing raspberries to strange women over Dad's shoulder. He has the best laugh and an infectious giggle. Hubbie could have had lots of phone numbers with this one as his wingman. So engaging, he loves people. Had the whole plane playing peek-a -boo on one of our flights north. I think he is used to being with me, which is why he cries on the rare times he is not.
Commando crawls from 5 months, crawls on knees 11 months, finally walks 17 months. Finally! Thought I would be carrying two babies around. ECN says the lateness is nothing to worry about.
Loves being a big brother. Constantly monitoring adventurous Boy 2. He loves his baby. Sits and chats whilst I feed Boy 2. Never a hint of jealousy, none of the anger or tantrums we were told to expect. Is very protective of his little brother.
Sensitive little man, is upset if people yell or argue. Does not like loud noises but is not exposed to them often.
At almost three he begins to change. Coincidentally it occurs with his MMR injection. He becomes extremely attached to me screaming whilst I shower. His speech changes to an indistinct, slurred, monotone. Obsessions come out and eye contact is avoided. Meltdowns run for up to two hours. My child vanishes and a new one is revealed. The doctor later says it is at this age that these signs emerge. I am lost in a fog of grief. After a long battle my Dad has lost his fight with cancer. I am not mothering my children, I am merely managing. The baby sitter mentions autism. I tell her to mind her own business, silly little know it all. My son is nothing like Rainman.
This is the beginning of our journey, in my heart I knew something was wrong but could not face it. As my grief grew more manageable, I started look at the issues. My first concern was his speech problems, and the unexplained changes. It was to be my starting point.
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.
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.
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.
"Mama, I don't LIKE it!" My JBean wasn't happy. Although this is not that uncommon, it was still a concern. The Nutcracker was coming up, and she was due to perform.
Last year, she was a flower. "I liked being a flower mama. Flowers are graceful, and princess-y. It was a pretty dance." This year, she was a lamb. She is less-than-thrilled.
"I hate the Lamb Dance! It's stupid. The costume is silly, I look like a little kid." I figured reminding her that is indeed what she is? Not so helpful.
Early on, I told her she didn't have to dance if she didn't want to. The Stage Mother? I am the furthest thing from that person. You won't see me pushing my children against their will. I have a theory about extra-curricular activities: if it isn't fun, what's the point? This may be because I was, if not born with two left feet, in possession of them now. Dancing well is hard for me, and I don't have autism. Still, if I were to try to dance, with actual choreography, you would think I was having a seizure of some sort.
I have given her every opportunity to bow out gracefully. She won't be a prima ballerina; she is still in the first-level class. All of her friends have pretty much moved up a level. She just isn't ready. As a parent, my heart hurts just a little bit for her. I worry as she gets older, girls will make fun of her. But she won't quit. She assures me that she wants to dance. And she does. She just doesn't love this dance. Still, she is trying, and that's all we can ask. To me, that in itself is a victory.
This Spring, she again will dance. This time, she will be a rainbow. She will wear a pastel-colored tutu. She wasn't excited about the costume, but she'll get used to it. And I have decided to get her some private lessons to get her "over the hump." I am optimistic that she may improve. She told me she was passionate about her dancing. I guess it is good to be passionate...do you really have to be good at something to love it?
Now I am looking for a triumph over the fear I have for her. The great, white-hot worry that wakes me at night. I think of the time that is coming, soon, or not-so-soon, when the girls look at her and laugh. When they look at her, whispering behind their hands. When it hits her just how behind she is, and that without 10,000 hours, she just isn't going to get those dance solos that she may be wanting. She will be tried, and found less than adequate. And though we cannot keep our children from pain, it is still a very difficult thing to watch. A lump in my throat and tears pricking my eyes, I wait.
Tina has two left feet and the right attitude, usually. Chocolate helps. She also blogs on Send Chocolate Now. Autism Sucks is her brainchild.
I was standing in line at the grocery store, waiting to pay for the basket full of groceries I had amassed on my once a month grocery stock-up. I hate grocery shopping, especially with kids, but I had procrastinated too long and the bread had molded and we were out of milk. My children were trying valiantly to hold it together; it was late in the afternoon and had been a long day. Grocery shopping is a break from the Routine that basically rules our lives, so often there is a difficulty in this endeavor. But today the children were on their best behavior. They were helping put groceries on the conveyor belt, while JBean kept up a steady stream of chatter. Today it wasn't them, it was me. My head was throbbing: I needed caffeine and I needed quiet.
My son decided to chat up the person behind us: "Do you like Mario Kart?" The person mumbled something politely, too quietly for me to hear. JBear took this as an invitation and continued, "I have Mario Kart for the DS. I also have a Wii. Do you have a Wii? I like playing boxing. I am good at boxing." I glanced back and the woman he was talking to seemed ok with her verbose companion, if a bit noncommittal. My son continued:
"Did you see the Indiana Jones movie? I did, it was good. They have the Lego game of Indiana Jones for the Wii coming out next month. I want that. Lego also makes a Star Wars game for the DS. They are making one for the Wii, but it's not out yet..."
Again, I glanced back and saw the woman shuffling her feet, looking around nervously. Time to reign him in. "JBear, shh! Come help me with the groceries." He didn't hear me. I had to call him three times. Then he started asking for gum at the checkout counter. And a yo yo. Pleeeeease? He has this trip-switch, when he has something on his mind, when he wants something, he just keeps asking. I don't even know if he realizes he does it. About that time, the lady got that look. Oh, you don't know the look? Simple.
When people notice something is a bit different with your kids, they react in one of two ways. The first group widens their eyes in amazement and says, "Boy, you sure have your hands full!" And yes, yes, I do. But it is what it is. I don't have an "S" embroidered underneath my t-shirt. I am just a mom, dealing with what I have been given. I don't want praise and I don't want pity. But often, they look at me as though I stepped from a space ship, a complete alien entity. If I throw the homeschool aspect in to the conversation, I see the door slam shut, the eyes cloud over, and I can almost hear the voice in their head as they thank the Lord that they don't have kids like mine, and thank goodness it isn't contagious!
The other group I encounter widens their eyes in surprise and says, "But they seem so normal." This is actually frustrating. This is the reaction I get when I try to explain Asperger's. I know that on the spectrum of special needs, Asperger's is considered pretty low. And my kids are actually mildly affected. Their behaviors are more annoying or frustrating than dangerous. My son has not eloped from a classroom since the First Grade. Of course, it helps that he has been homeschooled since the Second Grade, I suppose.
He does have an anger and frustration problem. In fact, when he is angry, he could give a salty dawg a run for his grog. He has recently decided that it is really cool to respond to any insult, real or imagined, "I know you are!" You can imagine how productive that is! He is in the habit of cornering people, because he is a social guy. He wants to interact, and find interesting things in common, but he doesn't pick up the cues when someone has had enough. I am constantly playing watch dog for him, translating so they will not miss out on what he has to offer, worried that people won't like him. Or worse maybe, they will judge me because of who he is.
I am not in the habit of explaining myself to random strangers, but I must be lacking. When I do try to explain to someone who inevitably asks, "What's Asperger's," I can sometimes hear, "Well, all kids do THAT." And yes, that's true. All kids do prattle on about minutiae. All kids have terrible table manners. All kids get mad and frustrated and yell. All kids don't know how to figure out when you have had enough of them. All kids interrupt. All kids wear the same clothes, every day, even if they are dirty, and get ticked off if told they can't wear that shirt again until it is washed. All kids harp over and over again about allowance, video games they want, going to the library...whatever it is that is on their mind at that very moment. All kids throw fits when they don't get their way. All kids need help getting dressed, even when they can actually accomplish this task themselves. All kids have unreasonable fears and cannot take out the garbage at night or get up to go to the bathroom in a darkened room. But the point here, is mine do it more. That's what Asperger's and High-Functioning Autism looks like. I didn't want bragging rights. I am not trying to one-up anyone else. I am simply trying to live with kids who have to live with "mild-mannered Autism." Anyone who uses this term clearly has never lived with nor experienced autism.
I don't play the Label Game. I don't have Munchausen Syndrome by Proxy. I don't find my identity in being Supermom or having kids with "special needs." We sought a diagnosis for my son simply because he wasn't functioning in school very well, and we started seeing some signs at home. I knew something was wrong. I wrote a letter to the school, asking for an evaluation. The district did their tests, gave us their result, and then we obtained our own private evaluation. We ended up with a diagnosis and an IEP. With some interventions and by educating myself, we found accommodations that worked for him. I learned how to talk to him, how to calm him down, how to provide a sensory diet and just learn to live with the quirkiness that can be autism. At some point, I started rolling with the flow, and it became, if not easy, something familiar. And, it was okay. I thought that was the end. Autism had touched us, but it was a tentative touch.
Cut to 2006. Those who read will know this already, but we had a house fire, and lost everything. The house was standing, but they gutted it, and rebuilt everything but the bones. Every item except for the clothes on our backs was destroyed. Of course, we all took it hard, but my then-six year old was particularly devastated. It was and is, the only home she'd ever known. On a good day, she keeps most of her emotions to herself. This caused her to retreat inside herself. She would build little worlds with her My Little Ponies, and Littlest Pet Shop, barricade herself inside the toy houses. Walls of toys would sit between her and the rest of us; she was shutting us out. We sought counseling, and of course, the question we all had was, is it the trauma or is she also on the Spectrum as well? After what we thought was a failed bout of counseling, it proved to be the catalyst and we decided to have our little JBean evaluated for autism.
I went back and forth, second-guessing myself. Autism is a spectrum, and there is a saying, "If you've seen one kid with Asperger's, you've seen one kid with Asperger's. My son and daughter are as different as night and day. I would look at her and think, "No way she is on the Spectrum...she isn't like JBear." I waffled and tested her myself, and I wanted to be wrong. She was diagnosed with autistic disorder two years ago.
So when the woman behind me gave me that look, I just smiled at her and said, "Kids!" About that time, the cashier finished ringing up my groceries. There is a time for education, and there is a time for cutting your losses and just getting the heck out of Dodge. So I'm sorry to the autism advocates,just know some days I fight the good fight. But today I pulled myself up by my bootstraps. This wasn't the day to try and educate the public. This was a day to take my children home with me, cuddle them close and read books while munching cookies. This was a day to just be. I swallowed the lump in my throat that came from unshed tears. Yes, sometimes I grieve for what they don't have. And maybe that's not what Supermom would do. As I rolled out to the car, I realized the lump in my throat wasn't just grief. It was something else, as well. It was a fierce, protective love, and a knowing that I am exactly where I am supposed to be. And I don't think that Supermom could have it any better.
T, who just does what she can do some days
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 typeamomLA Special Needs Kids Examiner at Examiner.com and her own site, Send Chocolate reflects her passion for her children and autism. t Autism Sucks is her brainchild.
I don't normally do this, but I am linking to the article on new autism rates I wrote at Examiner.com simply because I am still reeling at what I found out. I am having a hard time believing it but the CDC appears to be trying to bury new numbers as to the rates of autism in the US. The rate is now 1 in 100, or 1% of all kids in the United States will be diagnosed with an Autism Spectrum Disorder.WHY isn't this all over the news? Your guess is as good as mine. Read the article. What do you think?
T, who is NOT a Conspiracy Theorist, but is searching for an explanation
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 typeamomLA Special Needs Kids Examiner at Examiner.com and her own site, Send Chocolate reflects her passion for her children and autism. t Autism Sucks is her brainchild.
Sorry, I am crossposting this on all of my sites. I simply feel the issue is too important to ignore. Thanks!
You might remember earlier this year about the teacher from Port St. Lucie, FL who had her class vote on whether Alex Barton, a child with autism, could remain in her Kindergarten class. He was voted out, traumatized and refused to return to school. There was a great uproar and teacher Wendy Portillo was suspended without pay for a year with her tenure revoked.
The school board quietly reversed its decision this week..please read the rest here, and trust me, you need to read it.
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 typeamomLA Special Needs Kids Examiner at Examiner.com and her own site, Send Chocolate reflects her passion for her children and autism. Autism Sucks is her brainchild.
And we all share in this award, all of those who write here at Autism Sucks. You all are wonderful, and I am so glad you are here and a part of this.
About the award:
This award recognizes and gives value to:
1.- Commitment to Quality Education.
2.-Betting on the inclusion of Tics [children with tics] in the classroom.
3.-The effort of parents, professionals and educational centers in incorporating the Tics into the educational process.
4.-The struggle to defend, through the Teaching Values like: Solidarity, Love, Affection, Respect, Effort, Aid, Support, Sharing and Commitment, the future of our children and students.
5.-Recognize and value the effort of the families, professionals and educational centers for integrating effective conditions in the schools and in society for the children and special students, gaining them tons of love and allowing them all the resources at our disposal.
You can distribute this prize freely to those blogs that you consider to be working in these lines.
The Norms of distribution are:
1.-Publish the objectives of the prize and link to Recursos Educativos (Educational Resources).
2.-Publish a list of deserving blogs to pass on the prize.
3.-Communicate to each blog rewarded that they have won the prize.
I'm giving the award to:
califmom: she writes about Tourette Syndrome, cancer and homeschooling Sweet Schoolin': writes about homeschooling special needs kids Whitterer on Autism: autism blogger and so much more The Wonderwheel: two blogs on same domain, one about communication therapy, the other about autism. 5 Minutes for Special Needs: group blog about special needs
Thanks for your contributions to the special needs niche. You guys count!
Tina
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 typeamomLA 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.
Email me if you want to write for this blog. Just leave your email so I can add you as an author. ALL who are intimately familiar with autism are welcome! SPAM COMMENTS WILL BE PROMPTLY DELETED... don't bother to post.
Children don't suck, but autism often does.
Parenting a child with autism really sucks, a lot of the time.
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