‘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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NEEDED: Space

Previous winter breaks for our little family have been pretty stressful. The change in routine upsets the natural order of our schedules and since it is different, it is to be challenged by J. It’s basically an extended weekend by 14 days but with way more places to go, people to see and things to do. It has more sensory input than any other time of the year. So more behavioral issues, sleep pattern changes and mood fluctuations are to be expected and not to be held against someone with autism, our J.

But this winter break, our J has really shown us how much he has grown in the past year, figuratively but also literally. It may have been more noticeable this year because unlike previous years our winter break was less stressful and more home bound than ever before. J showed us that he has truly become comfortable in his own skin. His personality has been more prevalent than ever before. He’s truly grown into his 8 year old self.

How? He’s been wanting his own space, no more needed or wanted attention from Mom & Dad, unless at his request. He prefers to sit on the couch by himself or at the kitchen table with no company, even escaping to his bedroom when he wants self isolation. All in order to read his books in peace. From one book nerd to another I completely understand.

But for an 8 year old it sounds lonely, doesn’t it?

It definitely took us by surprise when it first started happening. At the beginning of winter break there were days that were a little to quiet as he requested his own space. As the break proceeded there were days that I was going to his bedroom every 15-20 minutes to check on him. Days that Lance was doing every goofy thing he could think of to bring him out of his room. Days that we’d turn music on or keep the TV on with Parks & Recreation to entice him to stay downstairs with us. And it might be just another phase but if not, that’s okay. Like I said before he is growing up and he’s not likely to stop doing that anytime soon, both figuratively and literally.

Luckily we’ll all be getting back to our routine in a day. We’re excited for Jax to have all his daily interactions again with his peers and school support team. We’re looking forward to hopefully having our regular interactions in the afternoon without him escaping to his bedroom. It might start off rough and take some time but again this is a change to the routine he has had for the last 2 weeks.

Change is big for those with autism and needs to be supported & understood, not discouraged or discredited. It’s not a negative reflection on you as a parent when unforeseen personality changes take place with your child. It is a reflection on you as a parent with how you deal & handle it.

So Beautiful.

I love watching J, whether it’s reading his books or watching his movies. How his face changes so dramatically while he looks, watches, ponders and analyzes what he is seeing. It’s his eyebrows, his mouth along with his eyes that carry all of his emotions so fantastically.

His eyebrows when they are all crunched up or in high arches for what he is pondering or getting excited about. His mouth with a smile or a large O for what is bringing him happiness or from the not knowing what is about to happen. And then there are his eyes that crinkle with myth and laughter which also makes his cheeks go quite round with happiness or when they fill with tears from a mistreatment or injustice that is being done to one of his beloved characters.

His face is truly his communication device; happiness, amusement, excitement, indifference, sadness, tiredness, despair and anger all reside so easily and true without complication on his little face.

There’s also other communication triggers to watch with J that show his emotions so readily. The flapping of his hands, the shaking of his head, the wiggling of his toes or the sprinting from the room because his anxiety about what he is soon to see for the hundredth time gets to the better of him.

There’s also the reaching for our hand to hold, the covering of his eyes or the request for a gentle head squeeze to help him regulate his emotions that may have become too much.

It has taken us years to understand how J’s emotions show themselves and even though we have learned a lot, there is still so much we are learning every day about how he sees the world around him, how he then interprets it, and then how he displays these feelings.

Watching J is a very fun hobby of mine, something that will never get old. My absolute favorite emotion, which no human being should never not be able to smile at, is J’s simple head thrown back belly laughter. It is absolutely contiguous and so beautiful.

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.

Love My Tribe

I always thought since becoming an autism parent, my tribe would consist of other parents who face the same struggles and challenges, ups and downs, successes and failures like I do. I was wrong. I thought in this tribe we’d have this understanding of acceptance, a feeling of camaraderie between us. I thought they would be the people I would go to for all my trials and joys with J and his autism. I was wrong. After 7 years (5 of those being a autism parent), I have found my tribe. First, I have to acknowledge J’s school team as part of our tribe. They have been great from the start, continue to support, embrace and encourage J everyday at school which in turn carries over to home. We are lucky that there is a trusting revolving door between us where information, assistance, questions and answers live. These loving individuals get it, as much as a non-autism parent who is helping raise our son can. Then there are those in our lives that aren’t part of an official autism group, but they are part of our group and thus for J. These friends don’t have an autistic child, a few have experience with autism but not with a it-resides-in-my-home experience BUT that doesn’t disqualify their understanding and ALL these friends may not exactly get what we go though in our autism world, but not knowing hasn’t stopped them from showing their support, reaching out to us, interacting & getting to know J and wanting to spend time with our family for who and what it is. So yeah, I don’t have what I thought I would have as an autism parent concerning a distinct support group related to our reality. But what I do have is a great group of friends that I wouldn’t change for anything. I so look forward to seeing these people, they have become family. We share hobbies and interests, keep in touch, see each other as often as we can, plan dinners, play games, share books & wine, and always have a good time.I hope I’m not jinxing it all. ❤️I always thought it would have to be other autism parents that were my main tribe, and even though that could be someday, right now it’s our friends with kind and gentle souls, who celebrate in big ways being different rather than looking down on it, who celebrate J with us and our life. I’m grateful that in return they have chosen us as friends and we get to celebrate their lives with them too!

Our Autism Is…Age 7

Our autism is…

One-on-one support and supervision at all times, both school and at home, because he needs it not because we are helicopter parents.

But this fact comes with the realization and beginning of J needing, wanting his independence. This has become a norm these past few weeks when J escapes to his bedroom to be alone in the afternoons. It’s definitely a sign of him getting older.

Is technically still nonverbal, though his sign language skills grow with words that allow him to communicate his needs and through his augmented communication device as well. Lots of learning on both his and our parts to come in the years ahead.

Still loves Disney and other animated movies with a passion the puts his mother’s reading obsession to shame.

Dressing, tying shoes, brushing teeth, putting on a coat, buckling and unbuckling from the car still requires all hand-over-hand assistance with additional prompts to stay on task.

Middle of the night wake up calls, usually 3 to 5 times a week. He may play in his room or with luck on our side go back to sleep relatively quickly with a little cajoling.

Loves when others, especially Lance or myself, make goofy or funny noises or enunciation with words. He’ll giggle a giggle that is contagious.

Loves swinging but needs assistance as he hasn’t learned how to kick his feet out for momentum. But this is okay, gives me time spent interacting positively with him.

Having to walk hand-in-hand everywhere. This is a great learning curve for J who doesn’t understand about danger, dangers in a parking lot, dangers alongside the road or the importance of staying with us when shopping. He is still of the mind frame of wanting what he wants when he wants it without consideration for the world that revolves around him.

Not yet potty trained…woe is me. Still have to purchase a box of Goodnight pull-ups each week. If you see coupons, please send to me or wine coupons are the equivalent.

IPad time is still a necessity. He loves having his iPad time for PBS Kids or his movie, preferring it to watching them on the TV. As iPad time is managed, he has become a lot better at giving it up for a break because he now understands he’ll get it back again later. Huge cognitive skill learned.

But not so much with traffic stop lights now. He has started to become upset, at times inconsolable, when we have to wait at a lighted intersection. Therefore we are constantly explaining to him that we have to wait for the lights to turn green because then we can go. It can be a bit overwhelming, but we’re hoping he learns quickly.

As with all aspects of autism, it is a spectrum. As with all aspects of being human, we are changing. Therefore, J like everyone but on a so much more wider plane is evolving at a his own pace with little consideration for what society feels he should. He’s the strongest person I know to be able to do that, to not give a care for what others may think of him.

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.