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

Bullies Nearly Sully Disabled Child's Sunny Weekend

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

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

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

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

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

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

And now this.

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

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

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

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

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

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

Thanks, Son.

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

Ok, so it's not all flowers and rainbows with autism

"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.

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What's The Point of School?

The following is in response to a comment made on the last post regarding homeschooling for autistic kids. It refers to a comment from a special education teacher. Go read it, first. Califmom's response needed to be its own post.

Sorry to be petty here, but if the argument to send my child to school is being put forth by a teacher who has more grammar/spelling mistakes in his comment than content, I have a difficult time swallowing that pill.

However, I'm a bigger person than the product of my (formally schooled) environment. So, I'll bite.

What I read in Mr. Black's comment is that my son should attend a formal, school setting in order to experience poor treatment by his age mates and failed social situations, which will then require the support of a team of professionals.

This scenario is seen as superior to providing my child with social experiences outside the academic setting, where stress is lower, and success is higher, which then result in positive experiences in the building blocks of his social competence.

Underlying all of this is an assumption by Mr. Black that I, as the parent of the child, check my opinions at the door, trust the system, and let the professionals do their job.

Mr. Black, just so you know, we were not always homeschoolers. We didn't even choose this path, initially.

In fact, for over 7 years, my children attended an expensive, award-winning private school that touted its ability to address special needs.

My personal educational background is in child development and elementary education.

We did not arrive at our decision to homeschool because we had some idea that it would be a great way to exclude our child from the artificial construct we currently call our schools, an institution largely existent as a remnant of the Industrial Revolution and the requirement that we produce a society of factory workers with a similar world view--followers, non-thinkers, non-questioners.

We arrived at this decision via a difficult path, but we are beyond pleased with the results we see in our children. More, our family and friends are impressed with the change they see in our children.

You see, nowhere else are we grouped in such an artificial fashion as we are in a traditional school setting. Children are grouped by age, and often ability (or disability), and then expected to derive value from this socialization.

I have yet to find a workplace (the argument most put forth for a school-based education is to 'get a job') comprised of same-age coworkers. Have you?

Aside from prisons and psychiatric wards, nowhere else do we lock people in for the day and attempt to control their behavior. Seems odd that we expect only 1 of 3 of those scenarios to be appropriate for all members of our society.

I want more for my child, and I have the ability to provide it. Maybe it's not what everyone can provide their child. Maybe it's not the right thing for everyone, but it is what is meeting the needs of my children and our family. It's also the beauty of living somewhere that provides us this freedom.

If you really want to boggle your mind, Google unschooling. That's what we do. I'm guessing it'll make your head fall off, but maybe it will just open your mind.

Because of her son, califmom knows more than she wants to about Asperger and Tourette Syndromes. She doesn't think autism needs to be cured. She does think that autistic spectrum disorders are more likely orders--another way of being in this world. Visit her at califmom and califmom homeschools.

Hey Bully, you Suck!

Nothing hurts more than watching your child be hurt and ostracized time and time again by other kids. Mean kids.. Suck! The neighbor kid used to jump our fence and play with my son's yard toys (swingset and sandbox). It would be one thing if he was coming over to play with my son, but he wasn't. He never had anything nice to say about him or to him, for that matter. He'd just make comments and say "He's wierd", "What's wrong with him", "I don't like him". I believed for a long time this was just because he was young (about 5 or 6 at the time) and just didn't know any better. Then, I found out he was in an inclusive classroom and around autistic kids all the time. I thought, dear god - please tell me he is not like this with the kids at school. And if he is, please let a teacher guide him. But it just kept happening. It became clear, he was just going to continue talking about my son in a rude manner right in front of him as if my son didn't even exist. Hey kid, he might not talk a lot, but he heard every word that you said. It made me boil inside. I had enough! I got off my wimpy butt and I talked to his parents. His mother was somewhat apologetic and said she would talk to him. And still, he was mean. He would climb our fence any time we were outside (and sometimes when we weren't outside) and play in our yard. This drove me bonkers (for liability reasons and also just out of a plain lack of respect). Finally, one day when he was half over our fence headed into our yard I told him: "If you come in our yard and play with Alex's toys, you need to be nice to Alex and not rude.". The next day his parents asked me why I yelled at their son. I told them exactly what I said, and they couldn't argue with it. Two years later, every time we go outside in our yard this kid still does the same kind of stuff. And, because of it we don't play in our own yard nearly as much as we should. How sad is it that my own kids can't enjoy playing in their own yard, with their own toys? We were recently at a birthday party and a kid called my son "stupid" over and over and over again because of something he did that was completely innocent to him, and a part of his Autism. I've come to realize that my son has a target on his back, Autism. Pick on me. Easy Target. A sacrificial lamb. and it sucks! Here's what I want to know: Is your autistic child the prey of bullies and on the receiving end of teasing by other kids? How do you handle this? I'd love any pointers because it is killing me to witness this happen to my kid time and time and time again. Just stop being mean to my kid, ok. It is Killing me! Hi, I'm hellokittiemama and I'm a mother of 2 very special children, living at the Jersey Shore. You can find me blogging my mad life with an autistic genius and a neurotypical diva, the gluten & casein free diet, vaccination choice, and more... over at The Bon Bon Gazette - because you know that stay at home moms really do sit around all day watching soaps and eating bon-bons. Got Bon Bons?

MY FIRST POST - Autism and Education

Some days you feel as though you are winning. Other days it is as though you’re being bombarded from every angle and you just cant do anything right. I’m on the phone to a mum informing her we have had some problems with her son kicking another student. I like to get in early and pre-empt the return call, as I know mum will be on the phone as soon as her son gets home and tells her the details. Mum understands the situation and I book her in for an interview tomorrow morning. We have come a long way together. From the days of school refusal because a student in his class didn’t share the same opinion he had on a computer game. To refusing to eat anything at school because the other kids called him “cheese disease”. I’m relatively new to the world of Autism and Asperger. When I was at University they prepared you by sending you out to a Special School Unit to get some hands on experience. They had you read scholarly article after article, written by boffins squirreled away in universities, on ways of managing students with Autism. I’m sure I wrote over 30 000 words outlining how I would meet the students needs, all backed up with reference to the latest developments and theories. Something you quickly learn when you meet a child who has Autism is that they are individuals. Generalisations go out the window with many of the theories and interventions. I have come across some students who are happy to shut themselves off from everything. At lunchtime they escape, with their blazer over their head, in a book or a hand held computer game. Whilst others want to be out on the football field or hanging around the staff room talking to people. Some are very self absorbed in class and are reluctant to share. Whilst others, accidentally touch on a topic of interest and they could talk everyone's ears off. The common factor amongst them all is their social interactions, or difficulty with. If you have a child on the AS spectrum and you’re reading this then you are all too familiar that children with Asperger and to a varying degree Autism are very self- absorbed. Everything is about them, to the vexation of their peers. I find it difficult to actually define my job title at times as I do so many different things. I am Head of Year Eight and Nine and I teach History. I help run our learning support department and assist the school’s Special Education Needs Coordinator. Basically I’m the go between home and the teacher. Being caught in the middle is like acting out the fable about the man with his son and donkey, going to the market. You can’t keep everyone happy. A line from a parent I spoke to last week sums up the issue “I am all for children with Autism coming to the school, but where do you draw the line when it starts to impact on our kids. How many exceptions are our children supposed to make”? This is like saying "I am racially tolerant but id hate for an ethnic family to move into my neighbourhood". Start to read through the stories i post on my blog and you soon get a picture of the parents im talking about. Something that still stumps me when dealing with Autistic students is that nothing is ever straight forward. The most notable case of late is of a student in Year Nine who has Asperger. I made reference to him in my opening paragraph. “Cheese Disease”, the name kids called him last year, and the reason he didn’t want to go to school. I was appalled at this and jumped on the students straight away. Later I hear that they called Andy this because he was bragging about the fact that he could eat his packed lunch of cheese sandwiches instead of the compulsory school dinners, which the students hate. I find that Students with Autism are often coupled with other disorders, the most common being Obsessive Compulsive Disorder (OCD). In Andy’s case he will only eat cheese, Jam filled biscuits and potatoe smiley faces (of a particular brand, mum has to keep old packets in case the packaging changes). This plays havoc with his health. When I tried to explain to the Head of the Kitchen why he wasn’t having school dinners, he wasn’t having it, saying, “well if I was his parents I’d just say eat it or have nothing”. There is no arguing with these people who have such a shallow insight. I didn’t bother to tell him that his mum had tried this and the result was Andy being admitted to hospital after not eating for three days. Now back to the issue of the complaining parent. Andy had been given two pet rats for his birthday and he had taken photos of them in to show his classmates. Andy persists with showing the pictures to everyone whether they want to see them or not. The next day I get a phone call from Andy’s mum saying Andy is refusing to come to school. I have her bring Andy in and she tells me the kids have been teasing him. They said that they didn’t like his rats. They said that he looked like his rats. They said that rats are vermin, so Andy must be vermin. I’m actually surprised the Year Nines know the word vermin but this is what Andy’s mum says. I attempt to get to the bottom of the story as I’m shocked to hear that bullying had taken place. I’m more shocked at the kids saying these things. As thankfully, bullying is quite rare at the school. I take one of the students from class and question him about the comments. He freely admits saying those things to Andy. This makes me angry. I begin to question why. It emerges that Andy constantly bragged about the rats and at every moment he had the picture out showing people. When someone said the rats were vermin this only fuelled the bragging. When someone said, “put the photo away I don’t like rats”, this only made him get the photo out more. Eventually the comments had come from pure frustration. Now here is my problem. The names were quite hurtful and did constitute bullying. But at the same time they had come as a response to the behaviour of Andy. I called the parents of the student’s at the centre of the bullying accusation and I was met with the response. “My son has an aversion towards rats so I can defend his actions”. I could also see the parents and students’ point of view. A Year Nine student hasn’t developed the social decorum to hold back on insults when faced with frustration. Their response to the bragging was to reply with an insult. For Andy this is confusing as he doesn’t see his behaviour as bragging and can’t understand the response the other students have to something he sees as deeply interesting. So here develops another problem. None of the other students want to be around Andy because he is annoying and if they say anything to him about how annoying he is they will get into trouble. Compounding this Andy knows this also. So he does not want to tell on anyone even if he thinks they are bullying. This is just one incident this year with one student. The school I work in is in the Independent sector and draws students who would benefit from a smaller setting. Over the past two years our clientele with additional needs has grown exponentially. 90% of the students have some form of learning difficulty and approximately 20% are statemented. For those unfamiliar with the U.K. system, Statementing is a process of identifying need’s and provides funding based on that need, so the students can attend mainstream schools. As you can imagine the people who hold the purse strings and give statements are tight and many parents especially the ones that are not well educated or familiar with the system miss out. This is a whole other issue and I wont get into it at this stage. In the U.K the fazing out of special schools has meant that SEN students are integrated and have access to the same education and opportunities as all children. Most schools have a special education coordinator and a team of classroom assistants. To give you a scale of the support we have 35 members of teaching staff and 26 learning support assistants. Many old teachers here despair at the influx of SEN students we take in, but looking at the successes we have it can’t be denied that the small setting with adequate support is the way to get the best out of these kids. I look back over my post now before publishing and i hope it does not offend. I hope parents can see the dilemma when faced with integration. My next post here will be about a boy I'm trying to help who says inappropriate comments all the time. Help with this one will be much appreciated. so stay tuned. Matt writes a regular blog of his own about his teaching at Trials In The Life of a Teacher. Feel free to make comments and offer him advice. On the same hand if you need advice on education and Autism feel free to drop him a line.