‘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.

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.

The constant trials of autism

We’ve had a lot of situations with J over the past several weeks. From him biting himself, to very early morning wake up calls and therefore lack of sleep, to body self discovery, a stuffy/snotty nose and an impacted ear. It’s all accumulated into one big cluster.

He isn’t feeling the best either today. Had a big day yesterday as we celebrated our fundraiser for autism surpassing its goal with a donors brunch and then had friends over for a game night. He coped very well- with all the different voices, noises and changes to his regular Saturday routine. However today he is suffering from all the over stimulation of yesterday; he’s tired, restless and unsettled.

I’m sitting on the floor of J’s bedroom now as per his request he wanted to lay down and he has been put back into pajamas. He recently discovered his private parts and though we were encouraged at the beginning of this revelation for him because we thought it might lead to a breakthrough in potty training, it has quickly become a thorn in our side. He likes to mess around with himself when he is bored or being defiant. So to make it easier for us all today, back to pj’s he went. You have to choose your battles and with all the other things going on with J today, mentally, this is one I didn’t want to wage war with.

I feel bad for my boy when he is feeling this way, out-of-sorts. I’m secretly hoping he’ll want to nap but I won’t push that on him, because it might result in another sleepless night for us both if I do. I could say I want us to both to sleep like babies, I definitely do for J, I on the other hand would like to sleep like my husband. Sleep through the laugher, squeals, giggles coming from J’s room, the thuds against the walls and the loud squeaks from him bouncing in his bed. But that’s for another lifetime. Instead, the essential oils have come out to hopefully spread peace and calm for us all as we take today on.

And to top it all off, we’re stuck inside again as another snow storm hit the Midwest. J loved the nice spring days we had earlier this week, being able to come home and play outside again. I’m ready to try hiking and walking trails with J, good old fashion exercise. He’s just ready to get out of the four walled buildings, whether at home or school, he has had to stay inside all day for too many days from this extended winter season.

This entry has kind of been all over the place but it some regards it illustrates how J is operating today and how his brain is functioning. From one topic to another and then back again. I loved how well J coped yesterday, not all days can be easy for him, he needs to have these days though to learn how to be comfortable and know what he needs to do to regulate himself. Not many people understand that his days can be so much harder than we all realize, that he did so well yesterday, I’m so proud. Now just to tackle all of the other J-isms, one at a time, after today.

To my…

husband, best friend, soul mate, partner in crime and drinking pal, chef, lover, father to J. It’s been 10 years since we said our ‘I do’s’ or for me to remember to pay attention to the pastor and repeat after him. I have loved you all this time, more some days than others when we just weren’t on the same wave length but in all finality I will never stop falling in love with you.

We’ve had a different and more difficult marriage than most when autism entered J’s life, our lives, our family’s. What we have gained through this journey will always be more significant and out weigh the things we think we have lost and with how we thought our family would grow.

I am thankful for the new and different things you have got me to try; food (mushrooms), books (comics), movies and tv shows (Doctor Who), video games (Overwatch). In turn you have tried the hobbies I enjoy and together we have expanded our pallet in life. We are more rounded people today for sharing a life together and learning for one another.

You are beyond an excellent father and husband, who puts up with both mine and J’s craziness. We’ve had our ups and downs, fights and tears, sleepless nights, long debates with difficult decisions, sadness and sorrow, but most importantly we’ve had smiles, hugs, kisses, laughs and plenty of makeup… I’m so happy we have survived these times, I know there will probably be more but I am so lucky to have you by my side. I get to call him mine forever, whether he likes it or not.