‘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.

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!

I’m fine. He’s good. It’s just another autism story.

I’m fine.

That’s usually my answer to anyone who ventures to ask how I’m doing.

He’s good.

Is how I’ll answer when asked how Jax is doing or how school is going for him.

There’s reasons behind these vague answers.

Who really wants to hear about the trials and tribulations of an autism parent. How hard it is. How lonely and sad it can be, depressing. How the bad days are many compared to the good ones spotted here and there. How as a parent I feel like I’m failing my son day after day, even though day after day I tell myself it will get better and day after day I try to parent better, have more patience, engage more but let him have his space.

Who wants to really hear the milestones and improvements J is accomplishing? How can they relate to the fact that my 7 year old; is starting to use two syllables when communicating whether coherent or not, is getting better at writing his name with hand-over-hand assistance or imitating straight lines vs squiggly lines, is learning 11-20 number recognition or about the weather or understanding opposites?

Who really wants to know that J wakes up at 3am consistently because that is his internal alarm clock therefore I’m awake too, that he is not yet potty trained and I don’t know if he’ll ever be, he still loves oral sensory input, that his favorite game is hide-and-find while his favorite activity is car rides, that he isn’t writing stories or making art to take home for Mom & Dad to see and no one what’s to hear that when he gets over excited/simulated he bites himself or us?

Who wants to hear about how I struggle daily to engage with my son or how difficult it is for him to allow me to enter his world? How when I’m allowed, it’s pure joy but to get to this point is a lot of work, (work worth doing) and that I wish more people would try to do with J.

No one wants to know that Lance & I have to continually tell each other that we got this, that it will get better or that we apologize to the other when J lashes out on them. No one wants to know that bruises, scratches, scars, tears, are part of my everyday life now. That I’m already upset knowing that one day we’ll probably have to put J on meds for his aggression. That I hide this part from everyone including myself or it becomes to much to bear. That if you asked me now, I still couldn’t express all of this verbally.

I’m fine. He’s doing good.

Our life is so removed from everyone else I know. To explain it in full context would be like explaining biophysics to a 3 month old, it’s just not possible.

I love my son beyond words and I wish I could express all aspects of him, how both challenging and special he is, how he both frightens and amazes me. I just haven’t found my physical voice to do so yet and even here on my blog I’m reluctant. Because who really wants to know, who really wants to take an interest? It’s been heard, read and moved on from. It’s just another autism story.

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.