‘Simply Horrific

Autistic children strapped to a radiator in a mental hospital, 1982 Romania.

This picture made the rounds within the autism community this past week. There’s discrepancies on when and where it was taken but the fact is that it was taken, there’s no discrepancies about that.

Within the community it’s been described as ‘simply horrific’, ‘shameful’, ‘disgusting’ and most are just outright appalled by it. And in the same breath those in the community react by sharing their wonderful stories about their loved ones who are autistic. How they are kind, loving & amazing children and grandchildren, how they are loved exactly as they are.

There are others unfortunately who make jokes about this picture; I assume they joke so they do not have to feel a true emotional reaction to it.

When I see this picture, my heart literally hurts and the sadness I feel for these children and all others before & now that are mistreated is inconceivable. Adults should protect all individuals with special needs in a safe, secure and caring manner, not in this despicable, ugly, terrifying, depressing way.

Though our society has started to recognize these atrocities and become more aware, there’s still a long way to go for true acceptance, understanding & support in our world. Because the reality is that there are those who don’t recognize individuals with special needs as human beings.

The disable children locked up in cages – 2014

Straightjackets and Seclusion – 2017

Autistic boy 5, strapped into chair by ankles and waist at school… – 2018

School strapped autistic daughter in chair – 2018

Shut away and threatened like animals… – 2018

Please read and share. True acceptance for all whether with special needs, development delays, sensory behaviors, disabilities, etc., comes from acknowledging that people can be different but should be treated no less than how you or I want and should be treated. We’re all human beings and in the end we all want the same thing, to be happy, loved and cared about. So please be kind.

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Behaviors, Expectations & Pineapple???

It’s the most wonderful time of the year…Maybe not so much when you’re an autism parent and even more so when you’re an individual on the spectrum.

I’ve noticed the hardships with J a little earlier than normal this year. It started prior to Halloween; aggressive behavior, standoffishness (my new word), needing his iPad like a crutch for self regulation & in social situations, and aloofness. It’s not to say we haven’t had any good or joyous moments, but the others have become more prevalent lately.

Though it’s hard, the best thing we can do is give him his space when able, let him work through his behaviors & emotions without hovering, monitor/control his iPad usage, and just let him be (which includes J voluntarily going to his room for quiet time to look at his books and stem – flap, bounce, and visualize as needed).

Our not so little boy is growing up and some of this behaviors are to be expected as he comes into his own. However, it’s hard when he can’t verbalize any of these emotions to us; to me as I’m the one he seems to be most upset with all the time. I do take it as best as I can and most of the time I’m able to cover the hole in my heart from his behavior directed primarily at me. Yet there can be difficult times and days where I find it hard to smile through the pain and have to focus only on intentional discipline (because a time out when Lance isn’t around is a no go as there’s no way I can get J to his room alone) with a side of distraction and a heavy dose of positive reinforcement.

I’m nervous how things may go in the weeks to come. Will these behaviors stay steady or get worse? Will his attitude jump off a cliff or will regression happen as all the activities, emotions and changes that come with the holiday seasons get into full swing?

Our consistent reminder is to keep J’s schedule (that we can control) as normal as possible which includes meals, iPad time and sleep. We’ve noticed over the past year how much this helps. We also have to remember, though this may be hard on family & friends and hard for Lance & I, that we can’t always participate like everyone else. Mainly, we can’t stay as long as you would like us to (or as long we we want to) because we need to do what is right & best for J and our little family, which is realizing when it’s time to leave. I can understand how expectations are neglected by these actions, trust me I get it, but it’s all for the best for our family’s well-being.

Being a parent of an autistic child, my own expectations have had to be thrown out many times. Though I still have small ones, they are not so big in scope anymore as J’s behaviors and attitude very much depend on how things will go. I know some will say “that’s how it is for all parents”, but it’s just not when you have an autistic child. It’s very much like comparing kiwi to pineapples. Kiwi is soft, fuzzy and sweet whereas pineapple is hard (to get past the surface), pokey (have to be careful when handling), and can have a bite to it before turning sweet. I’ve just realized through this analogy that J is very much like a pineapple.

So as the weeks progress and the holidays (with all their expectations) come nearer, I will take it one day at a time. I will remember that a bad moment doesn’t make it a bad day and a bad day doesn’t make it a bad life. I’ll remember it’s okay to give J his own space and have my own as well. I’ll remember to store those precious moments of laughter, giggles, smiles, cuddles, hand holding and hugs away for those times that can become too much and that those good times are just being hidden away but will come again.

Now wish me luck as I go try to hug my pineapple.

Stimulation & Autism

My sister reached out to me about the GREAT video below (click the link to watch). She said that after watching it she came to understand what Lance & I meant when we state that J is overstimulated. It’s not just about what has physically transpired during the day, but for J it includes all the lights, sounds, smells, people, and places. It’s a whole different universe for J compared to us mere mortals.

If one truly thinks about all the noises they hear throughout the day, they are all sensory simulates and often times a sensory overload for a person with autism. It’s quite easy for a neuro-typical (NT) person to process all these sounds without a blink. But a person with autism processes differently; separating all the sounds out (some sounds may be more acute than others), and some sounds also turn into visual input that need to be sorted through too. This is how some autistic minds operate. It isn’t something to look down on, critique or shy away from; it is something to understand and realize that this autistic person is trying to process our overly complex world.

The worst for those with autism is that most of their struggle is internalized until they can’t process anymore and a meltdown occurs. This is because more often than not, autistic individuals (especially when they are younger and sometimes into adulthood), are unable to express themselves when an abundance of stimulates occur.

I’m not an expert, but I am an expert on our son and his basic functions & feelings. I know when the shit is going to hit the fan, I can usually feel it in my gut. I know when it’s time to call it quits and go home (though I may not personally want to just yet). I know when a meltdown can’t be managed or redirected and physical strength and restraint is used to ensure no one gets hurt.

Over stimulation is is something we have to think about daily with our J. It plays a factor into what we can expect from him, how we monitor his wants & needs and how we analyze his behavior. A busy day at school can lead our boy to be overstimulated whereas a lazy Sunday at home may produce an anxious “let’s go let’s go” boy. We constantly assess his mood and that is why Lance & I always ask each other how J’s day was or how he was with each other. To be in the know helps us and more importantly helps our J.

https://youtu.be/Lr4_dOorquQ

What A Night!

We went to our first Autism Action Partnership event last night, an evening at the zoo. I was so excited to take J for several different reasons that other autism/special needs parents can definitely relate to. All of my excitement was well-placed as we had such a good time.

J was able to run amok if he so chose to. It wasn’t crowded at all and we really got to enjoy our time together without worrying about everything and everyone around us. It not being crowded also truly helped J not have any of the negative effects of over stimulation that usually occur with a day at the zoo from all the people and the noises. The quietness really helped him stay calm and focused versus an assault of elements that can and usually do overcome him during a typical zoo visit.

J was able to look at the things he wanted to for as long as he liked; whether it was the fish and stingray in the aquarium tunnel or the high ceiling and speakers in the dessert dome. There was no feeling of being pushed along by the crowd or being bumped into time and time again to allow J to enjoy what he wanted. We got to flow along with his agenda without interference.

J was able to be himself completely. He flapped, he screeched and yelped a few times, he pointed constantly at everything he was excited about sharing with us, he dictated where we went in the exhibits even if it was to something we had already seen twice. We were able to be and just hang out, soaking it all in.

Being there with other autism families was the best, there was no staring when J flapped or when he let out a high pitched yelp because of how excited he was. There were no looks of distaste or criticism for parents with kiddos having meltdowns or sensory issues. There were lots of smiles, and laughter, and looks of understanding between all the families there, an enjoyable time for all.

One of the things I noticed was the way parents talked to their kiddos. I could definitely tell I was around other autism parents. The slow, patient and soft voices of parents engaging, instructing and coaxing their child or children to see all that the zoo was offering was by far the biggest difference from a normal zoo day.

It was such a great experience, even for only the hour and a half we were there. J signed home and we were able to casually make an exit with no meltdowns of our own. Just a few backwards glances by J longing to go back already. I can’t wait to go back too.

Autism Awareness Needs to Equal Acceptance.

Tomorrow, April 2nd, is World Autism Awareness Day. This has been a great campaign for many years by exposing the world to autism and one that I love supporting. I’ve Lighted-It-Up-Blue every year since J’s diagnosis by advocating for this day, wearing blue myself, encouraging others to do so and even changing our outside house lights to blue.

However, in the past year I’ve come to support the concept that this day not only needs to be about awareness but also about acceptance. Our world still needs to be aware of individuals with autism, as recent studies indicate that 1 in 41 individuals are diagnosed, but more importantly these individuals need to be accepted. Accepted for their differences and challenges, for their own uniqueness, and accepted for who they are not just their autism.

Individuals with autism need support, patience, love, respect, and understanding. Autism isn’t something to be cured or fixed but rather acknowledged and not judged. This may mean that most people will have to go outside their comfort zone to engage with a person that has autism, but this minor discomfort for you is nothing compared to the discomfort an individual feels when they have to go outside their comfort to be apart of ‘normal’ society. (Normal is all relative though, there is no such thing as normal in my book. Normal is what you make it.)

For our J, I want him to be accepted by being recognized by others when he is in their presence. I want others to make sure they say hi and goodbye, knowing that he isn’t going to seek them out to do so. I want others to acknowledge him and ask how he is doing, knowing that his Dad and I will try to help him answer back but will most likely be the one answering for him. I would like others to engage with him whether he is watching a movie, looking at a book or bouncing on his exercise ball but knowing that he probably won’t answer back too much and I want them to keep trying. I want others to know that when they engage with J, it means the world to him and it means the world to me. It will take time, probably a long time for him to reciprocate back to you but when he does it will mean the world to you too.

I want all individuals with autism to be accepted not just because of my J but because they deserve to be. These individuals shouldn’t be defined by their autism, it just is who they are, it’s just a piece of them. They are just as friendly, brilliant and extraordinary as you or me.