Posted on by Wise Sass

I love an Autistic boy

I borrowed the concept and some of the text below from a post I saw on an Autism awareness page on Facebook. I liked the concept – it does a good job of showing life from an Autistic person’s point of view  – but the original was quite long and, um, a tad rambling. I’ve edited quite a lot for length and pertinent content.

Though every Autistic person is unique in how their developmental disorder manifests itself, these 5 things are fairly common among all Autistics. This is important stuff – especially right now. Contrary to what you may see in the mainstream media these days, Autism is not a mental illness; it is a developmental disorder.

5 Things a Person with Autism Needs

1. Patience

Realize that it takes me longer to do things. It takes me longer to process what’s going on, what I have to do next, and how I’m supposed to do it. Please do not get frustrated. I work best at my own speed. Do not try to rush me because I will only get more confused and more anxious. I often have trouble applying past experiences to new ones and at times it feel like I need to learn new tasks all the way from square one. Please do not give up on me.

2. Space

There will be many times when I will turn inward. I like to shut out the world around me; block everything out. My focus is in a place you can’t see. Just because you can’t see it doesn’t make it less real for me. I’m not doing it on purpose or to hurt you. It’s like a bubble engulfing me and it’s hard for me to pop it. When I get in this place it’s calming for me and my thoughts aren’t racing like they normally do. It is safe.

I have sensory issues so please remember that when things get loud, crowded, or chaotic, I get overwhelmed, frightened and over-stimulated. Please don’t stare, point or ridicule when you see me acting strangely. I may flap my arms. I may hide underneath the table at a restaurant. I may curl up into a ball or burrow under a pile of coats. I’m just trying to insulate myself from the chaos around me. Reset my spinning brain. It’s not because I’m misbehaving. Please do not give up on me.

3. Support

I need to find my niche, my favorite activity, my talent. Please help me to find it so I have something to do that I am good at. This will give me confidence in life. This will be an activity that will calm me and make me feel happy. I need something to keep me busy that makes me feel good at the same time. When I find what I am good at, my self-esteem will increase. This will help my life progress and blossom. It may be something simple – like stacking blocks, riding a bike, or listening to music – or it may be more complex but it will make sense to me. Please give me the support and environment I need to find this activity.

This world often looks down on people like me. I need a little extra help and I need advocates who will help to get me in a good place in life. I may always need some guidance on how to maneuver in this world. I appreciate everything you do for me but sometimes my Autism makes me unable to show you that. Please do not give up on me.

4. Structure

I work best when everything is predictable. When things are always changing my brain can’t keep up. It feels as though the world spins too fast for me and everything is out of control. Many days I live in fear of something drastically changing. It can be the smallest thing that can send me into panic: the wrong brand of cereal, a strong smell, a weird sound, the feeling of stiff, hard jeans on my legs. I am more sensitive to everything around me; that is how my brain works. The best thing for me is consistency in my daily activities. Routine makes me feel safe. Feeling safe and comfortable makes me happy and that enables me to flourish. Please do not give up on me.

5. Understanding and Love

The world can be a scary place for me. I have difficulties with socializing and communicating, but I do have feelings just like you. I have trouble expressing them and bringing them outside of my head so you won’t always be able to tell what I’m feeling. But I love, just as you do, and I need your unconditional love in return. Even when I’m mean to you. It’s just because I can’t say what I’m thinking and I don’t know how to reason through my feelings.

There will be a lot of people in life who will not understand me, who will be annoyed or even afraid of me. I will feel that shadow over me. All I need is your love and to know that there is someone, if only just one person, who loves me unconditionally for who I am. Please do not ever give up on me.

***

Yesterday I heard that there was a vile person who put up a Facebook page saying if he got 50 likes he would go BURN an Autistic person in retaliation for the shooting in Newtown.

I can’t even. I just can’t.

Look at this boy:

Jamie b&w

He is light. He is life. He is LOVE.

To think that someone would consider hurting him is beyond comprehension.

He’s been having a hard time lately. He’s had trouble at school. Trouble tolerating the stimuli around him. Lashing out in frustrated anger at his teachers and peers. We’ve been having meetings. Making phone calls. Seeking help, instruction, assurance. How do we help him to cope? What can we do to teach him coping skills? What can the school do?

We’re on a path. We just keep trudging along. They are making adjustments at the school. It’s been going on for a few months and seemed to peak following Thanksgiving break.

But the other day something momentous happened. I was trying to get him to go to the bathroom. I knew he needed to go. He was doing the thing he does when he’s holding his pee. He got angry at me for telling him he needed to go. He came up to my face, yelled at me, and he was about to hit me – I know, it’s happened enough times – and then a wonderful thing happened. The look on his face changed; some of the stormy-ness fell away. I saw the moment he realized what he was doing and stopped it. He dropped his hand, stepped back and turned away from me. He walked a few steps back and looked away. He stopped himself in the middle of his emotional outburst. That has NEVER happened. I was so proud I may have cried. Just a little.

Then, the next day, his communication log that came home from his paraprofessional at school was glowing. He participated! He engaged! He didn’t get upset, frustrated or angry all day. He played football at recess, for goodness sake! WHAT THE WHAT??

Is it a sign? Are the coping skills that he needs at this point in his life (the onset of puberty, escalated school demands, peer group involvement, etc.) finally kicking in? Oh please, oh please, oh please, make it so. My momma’s heart needs some positivity right now. I need to feel confident that my baby will grow and learn and adjust and thrive. I need to know that so badly.

I don’t mind if he’s weird just as long as he has growth. Weird isn’t bad. It’s just different. Different is good. Can we all start teaching that to others now? Different is okay. Different is normal. Let’s embrace the people in our society who are different and not make them feel like outcasts. It’s so important to our collective consciousness as a nation to feel a little more unity and a little more acceptance.

Now go forth! Be tolerant and spread love. Be the change you want to see in the world. We’ve all heard that, but do we live it?

Yours, in hope,

Stef

Posted on by Wise Sass

The conversation can’t *just* be gun control

Mental illness does not equate to “criminally insane.”

First, let’s start here: I actually prefer the term “mentally different” versus “mentally ill”. “Ill” implies that the person is sick and they can be cured. And when referring to Autism, specifically, that’s a developmental disorder. Not a mental illness. The mentally different, and Autistics, are wired differently, making it harder for them to learn and assimilate into society like neuro-typicals. But they aren’t broken; they can be fully functioning members of society. They have hearts and souls, and they need love just like the rest of us. We need to help those people even more – those people AND their families – some how, some way, so they aren’t made to feel bad for being different. Or resentful or angry.

And (in-an-oh-by-the-way-how-come-you-didn’t-know-this-already-tone) we really need to not keep guns near them too. Because, duh, impulsiveness is pretty common in Autism Spectrum Disorders (ASD).

Autistics are not naturally calculating, violent predators. Their violence is reactive, unplanned and immediate. Generally a response to frustration and an inability to make themselves understood. Other conditions can influence this, of course, like ADHD or other neuro/developmental disorders, and those people who have combinations that can lead to violence, or a history of  minor violence, should be monitored and provided all the help and support they need. It’s incredibly heartbreaking but it doesn’t always have to be. They can learn to cope.

I don’t know why Adam Lanza did what he did. I wish I understood. I wish I knew. My son is Autistic with ADHD and has some emerging aggressive behaviors. Tell me – how can I help him? How? Am I doing enough?

I know the answer to that last question – NO.

I should be doing more. I should have every measure of support possible  made available to him. He is so worth it. I want him to be that kid on the news who has Autism and ADHD and beats the odds to give the Valedictorian speech at his school, or invents something truly amazing and scientific, or who uses his amazing heart & soul to develop a non-profit organization with grassroots support that spans the world.

I don’t want him to be that kid that everybody shakes their head at and calls a soulless coward, or a lunatic, or they say he’s “mentally ill” with a sneer in their voice and the implication that within that phrase is the answer to the whole story. It’s not.

Off the top of my head, I want my son to have these things:

  • SUPPORT. Unwavering, unlimited support from family, friends, authority figures, school systems and the government. He’s so sweet. How can everybody not love him and want him to succeed? How can he create something amazing if he isn’t given an environment where he can think?
  • Therapies (social, occupational, speech)  available regardless of ability to pay, and with minimal hoops to jump through.
  • A positive family environment. I think this is so important. Nurture your children. Help them learn. Lead by example. (I think we all forget that from time to time).
  • Uplifting, supportive teachers and staff to provide positive learning environments. Why would a kid want to learn or continue to pay attention in school if being at school is like torture for him? We need to protect our children. Sometimes I don’t think we recognize the dangers out there; the peer pressure, the bullying, the struggle of being an individual but also trying to fit in with the crowd. It’s especially hard since neuro-typical kids often learn to cope without help; we assume all kids can but often that’s not the case.
  • Insulation from things they don’t understand or can’t comprehend yet – like violence. If kids are exposed to violent acts before they have the proper perspective it can make it seem more acceptable some how. Like this violence is just a part of life so maybe I should embrace it. Every act of violence – targeting children or not, targeting Americans or not – should be shocking to us. ALL of us. We cannot continue to accept violence as a natural part of our lives.

Somebody told me that I should tell my 10 & 8 year olds about the shooting in Connecticut to “prepare them” and to “teach them what to do in that situation.” Sorry. No. I will NOT being doing that. We should NOT have to prepare our kids for a situation in which they may have to HIDE FOR THEIR LIVES. At their SCHOOL.

Let’s protect our children. ALL of them.

Yours, in despair, anger & heartbreak,

Stef (just another mother of a mentally different person)

Posted on by Wise Sass

I will never understand

Edited on 12/17/12 to add reaction to new information.

Today I am only a mom. I am not an employee today. I am not a daughter or a wife. I am just a mom.

Sorrow

I will never understand the thought process that tells a person it is okay for them to take another life. I will never understand that. To take their life? It’s not like robbing them of all their cash, or stealing their watch, or even burning down their house. But to end their life? Just like that and in the blink of eye? No, never.

But even worse – children. Innocents. I can’t even think of it. My heart is exploding with empathetic pain and anguish for every loved one of every murdered child. And today, especially, today.

I’ve been to Newtown, Connecticut, and it’s a small town. A tight community. I know people with children there. They are safe, thank goodness. But so, so many others are not.

Once upon a time I supported capital punishment. Why shouldn’t a criminal, someone obviously evil who have (likely) hurt others, get the ultimate punishment?

And then I realized – I don’t have the right to make that decision. The government does not have the right to make that decision. As humans we are flawed, vulnerable, and set upon this earth for a limited time. Our time is up when the universe (God, Allah, Jehovah, Yahweh, Divine, Great Spirit, Creator, or whatever you believe) has determined it to be up. No mere mortal should be able to independently make that decision.

I want those sick criminals to feel the pain and punishment of their actions. I want them to agonize and wail and fight and hurt for what they have done. As thinking, feeling humans they are compelled to reason through their actions over time in the best way they can. That may equate to remorse and acknowledgment of their bad deeds. It may just fuel the anger, hatred and resentment within them. In either case – they need to feel those emotions to torture them for what they did. Killing that murderer, as the “eye for an eye” believers push, will not punish the murderer. It just ends their pain.

The shooter is dead – whether by his own hand or another, I don’t know as of this writing. By this act he was essentially committing suicide anyway. What a coward. To inflict such pain on innocents. To hurt so many people so wholly unconnected with him. If the soul does live on at all, whether there is a hell or through reincarnation, I hope this man is made to feel the pain & anguish of every relative of every person he killed today, over and over and over again, throughout his existence.

May those children and teachers, whose lives were lost today through this senseless act, never be forgotten. I will never forget.

Tell me this – how do I protect my children from being murdered? How do I keep them safe?

Yours, in love, anguish and paralyzing fear,

Stef (just another Mom)

Edited to add: Since writing this on Friday I’ve found out more about the shooter. The speculation/assumption from apparent people “in the know” is that the shooter, Adam Lanza, was mentally ill. Possibly Autistic/Aspberger’s. Now I’m just sad for all of them. Sad and broken-hearted and I can’t think about those poor innocents and their families without breaking down entirely. Peace be with all 28 people who died as part of this tragedy.