Milestones

Monday, June 4th at the Tacoma Dome Convention Center, my kid graduated from School of the Arts.  I wasn’t able to attend – however I had the best seat in the house.  Tacoma Public Schools live-streamed the graduation on Facebook and the camera work was excellent.  They also posted literally TONS of photos so I didn’t miss a thing.

skye bill rossman award.jpg

This is my child, Skye Gibbs, receiving the Bill Rossman Award for 4 years of unquestioning dedication to her craft – Lighting design and Stage craft from School of the Arts – Tacoma.

She received the award for her service to Tacoma School of the Arts above and beyond regular school requirements, for her voluntary 10 hour days in the theater, her award winning performances at State Solo and Ensemble Competition, and her work with Tacoma Opera – which started as a Senior Project and ended with paid positions as Assistant Stage Manager and cast member.  It was noted that she spent the entire weekend after final exams designing and operating the lighting for a community dance review.   I pushed her to participate as much as possible, even though it meant she didn’t have time to help me out at home.  It was a mother’s sacrifice – and it paid off.  Along with the award was a hefty scholarship that will reduce the amount of student loans she will need at Pacific Lutheran University.

I dare anyone to keep the schedule she kept for 4 years, let alone excel and shine brighter for it.

She did it all by herself – and I gave up my life to support her.  I guess my mom was right – I really am the Mother of Greatness.

 

don’t do bad things.

The reason I appear introverted and I mostly keep to myself is that I am an empath and a human lie detector.  Whether I’ve known you a minute or all your life (There’s not one person alive that I’ve known my entire life), if you lie, I know.  I learned to hide it, in the abusive situations I lived in, because I was surrounded by liars who didn’t take too kindly to being called out – and I valued my body and my health enough to just nod and smile.

The key to living a simple, happy life is don’t do bad things.  When you do bad things, you have to keep them secret.   Then you have to invent an imaginary friend to absolve you so you feel a little better about yourself, but always a little on edge.  If your health is poor, your hands a little shaky, you don’t sleep well, or you sleep too much, you drink too much, you eat too much …. well – those are repressed secrets.

Liars expect lies – that’s why they feel no remorse or shame.  Trip them up, tell the truth.

Thankful Thursday

I think this may be the most needed thankful Thursday ever.

This week, I have had 3 opportunities to speak my truth instead of figuring others were more qualified than I was to have an opinion.

I know better now.

When I start feeling a panic attack coming on, I search myself for what I”m not saying.  I’ve been shoving it all down to my gut all my life.  Although I”m exhausted, hungry, and not sure of the next minute, I know who my friends are.

I am thankful I am unafraid.

I am thankful for the investigators diligently working to find the truth.

I am thankful I have my beautiful son home with me for a while.  We studied geography, history, music and science today.

I am thankful for the guy who painted my house this week.  I summarized what I learned from him in 3 points.  Move slowly but deliberately, when the thermos is empty it’s quittin’ time, and this will pass.

I am thankful that this will pass.

 

 

yeah, taking back my good words…

Sorry, TPS, you don’t deserve the nice things I said about you.

One of your employees physically restrained my son and cut his hair.

Why so upset about a haircut, you ask?

First, my son is non-verbal and has low-functioning autism.  He can’t say no.  Anything you do to him without my permission is considered non-concensual and assault.

In order to cut his hair, you need two people because he doesn’t like haircuts – because of his sensory issues.  He needs help keeping his body calm during a haircut.

In order to cut his bangs, the staff member would have had to restrain my son somehow – say with a long belt or something – strapped down his arms, stood over his knees and held his chin while they quickly and raggedly cut his bangs.  Let me say that again – in order to cut my sons bangs, someone, between the time he got ON the school bus and the time he got OFF the school bus, strapped my son down to a chair and cut his hair.  Cutting his hair requires very close personal contact – so they probably pressed their body against him too.  And I”m just supposed to be okay with this???????

 

WITHOUT MY PERMISSION OR KNOWLEDGE.

He came home from school with his bangs cut, I noticed immediately – and even remarked out loud at the bus “Oh, someone cut his hair”….

At Mary Lyon Elementary, the staff would cut his hair, his nails, and other personal care without my permission – they also had a “bunker room” that locked from the outside.  They remarked how much CJ loved to stay in there all day with an iPad and a blanket.

 

Now, the staff at the school is quite sure NO ONE on their staff would do anything like that.

Well, I didn’t cut his hair, and when he’s not on the bus or at school, I AM WITH HIM.  Within 20 feet of him at all times.

 

So, TPS – find out who assaulted my son, have them arrested, I will press every charge I can find, and send them to prison for assaulting my son.

 

I would NEVER give my son a shitty haircut like this.

 

no- that’s not the reference I’m trying to make….

I feel like the Jane Goodall of Autism.  She’s the only person I could think of to compare myself to.  My degree is in Educational Psychology.  It was a couple years after the diagnosis, when I finally came to terms with the label of Autism after hyper-loading every book, video, and expert’s words on the topic, that I decided to ignore it all.

Yep – donated all the books to the charity store, deleted all the PDF’s, Audio files and Manuals.  When we transitioned out of the “Birth to Three” program, we lost all services because my husband had insurance.  Then he died, and we had no access to health insurance.  I was on my own and nothing any of the experts said fixed my child.  I rolled up my sleeves, put on my comfy pants, and let my inner psychologist loose.

I stimmed, I rolled my eyes – watching my son carefully making sure I was mimicking him perfectly.  He found it funny, but it helped us bond together.  Instead of stopping the stimming, I wanted to know why he stimmed.  Then, if it was something within my control to fix, my theory was he wouldn’t need to do it anymore.

I practiced echolalia and playing the same 4 second bit of a video over and over again, watching it closely.  The more I tried to be like him, the more I began to understand why he did the things he did.  Impatience or frustration coupled with the inability to voice why equaled pacing the hallway a certain way.  Needing the bathroom was a different kind of dance.  Before long, I realized all the stimming was dancing – it was his language.  Perhaps this is why he feels so connected with the bees.

The more I learned about CJ and why he did what he did, the less-helpful all the books and advice were.  I’m sure they were a good fit for someone else – but their Autism wasn’t my Autism.  I have had to over-explain so many times how I disagree with giving a teenage child a chewy-toy.  If you can train a dog not to chew on things, then certainly my super-intelligent son can learn not to chew on things.  He doesn’t have a medical need to chew.  Remove the negative stimulus causing the undesired behavior and the behavior will disappear also.  In this case, explaining to my son the “WHYs” of not chewing on things was all I needed to do.  Now, when he feels he needs pressure in his mouth, he has a number of things he learned from his OT, Miss Molly, that he can do instead – socially acceptable things.

He was biting on his hand.  His teacher explained how that isn’t a good behavior and then she asked him if he wanted her help to stop doing that unwanted behavior.  Every day, they made a contract together to reduce the hand-biting.  Now it’s only in extremely stressful situations for him that he bites his hand.

I paid attention to how he reacted in different environments also, and what kinds of things made him uncomfortable.  Then, I didn’t take him there anymore.   Why drag him places he doesn’t want to be.  The places he must be that may not be fun for him, I prepare him with everything he can expect from the trip, and how he gets to “unwind” when we get home.  He understands the whys of proper behavior in public.  He trusts me now to tell him why first, and then what I want from him.  He never asks to take his iPad out of the house on trips.

We have very few meltdowns, always at home, and when we do, I can usually figure out why in a few seconds.  We have more tantrums lately, but those are because his iPad needs charging.  He still lacks a sense of personal safety, and for that, he still requires close supervision, but his room is a safe place and he enjoys spending time in there now and then.

So my first step to learning “how I do it” is:

  1.  Forget the diagnosis and parent your child.  Learn their language.  If you know your gut is right, follow it.  You are the only one who knows what your child needs to thrive.

 

Thankful Thursday

In this premier edition of Thankful Thursday, which I hope to make a regular weekly thing here on the blog, I am thankful for the staff at my son’s school.  I know the personal direct involved interaction my son experiences with the staff is not unique to him or just because he has an IEP (Individualized Education Plan).  They treat him just like they treat every other student, and they treat every other student just like they treat him.

In this school year, everyone on my son’s treatment team has noticed the change and I can only say the school environment was the catalyst.  He’s initiating casual conversations, he’s asking for help, he’s asking to go places and interact with other people.  Instead of hiding away with his iPad, he chooses to spend the evenings with me in the living room where we watch tv together or play games.  He’s becoming more aware of his environment and how he can affect it.  He’s learning that his moods affect others.  He’s learning to trust others to do what they say.  He’s learning to interact.

I’m blessed to have such a great learning environment for my son just a couple blocks away from my house.  Tacoma Public Schools is doing it right.  TPS has been almost the sole constant in our personal Autism Journey.  I honestly don’t know where we would be without them.  Thank you, Tacoma Public Schools.

The thing in the news that happened.

I feel I must share my feelings about the recent event locally involving an autistic child and his grandfather’s attempt to handle the situation. My credibility comes from my experience raising a child on the spectrum as well as my background in adolescent behavior management and counselling.

I am the first person to stand up and defend ANYONE from judgement – in this case, I believe that situation was not the whole picture, but a snapshot – and I feel the grandfather had the best intentions for his grandson, to safely transport him home – and I’m almost positive that probably happened to grandpa when he was little…we become what we’re taught – and grandpa didn’t grow up with autistic kids around – grandpa grew up in the generation where kids were intimidated into good behavior. So – grandpa didn’t have any other options or answers. I hope this event going public like it has will provide an educational opportunity. While I strongly disagree with physical restraint, I’ve walked in my own shoes long enough to know I only know my shoes. Hopefully, the media will pick up on the educational opportunity instead of the sensationalist click-bait controversy, and we can open the conversation about our children’s need for protection and safety instead of punishing untrained and unskilled caregivers just trying to get through the day.

Autism; Interrupted – the book.

We were at the nutritionist’s office a few weeks ago when she asked me “How do I tell parents how to do what you’re doing with your son – because you’re doing it all right and other people ask me and I want to tell them how you do it?”

So many people have said or asked “How do you do it?” and I never realized they were genuinely asking me “HOW do you do it?” Not “How do you DO it”.  The nutritionist finally worded the question in a way I understood.

My answer was – I parented my child.

It’s that simple.  Notice what words are NOT in that sentence.  I simply parented my child.  We had to do things differently than others, but I don’t like calling that accommodation or adaptive or anything else like that because I feel that makes my son “less” because of his differences.  Who’s to say who’s way is THE way – and the rest of us should emulate?  If you parent the child, you provide the environment the child needs to grow to it’s highest potential.  Sometimes that means non-traditional strategies for meal time and social interaction.  It means thinking outside the box.  It means putting down the parenting books and following your gut.  If you can shut out the voices of all the people who mean well but don’t have to live it, you can hear inside what your child needs from you.  I’ve been a parent to many children that weren’t mine biologically.  It’s nothing to do with the child – and everything to do with the parent.

Gender roles have had a large influence on everything.  I don’t think they should anymore.  I think “parent skills” are one of the things in the DNA soup.  Either you’re born with them or you aren’t – along with eye color, foot size, and mathematical abilities.  I raised my children without imposed gender roles.  They picked up things from environment, but I never made a “boys/girls” divide and I gave them a lot of free will.

I also started asking one question – “Why do I have to do it like you do when that doesn’t work for us?”

This is the first sketch beginnings of the prologue to the book “Autism; Interrupted – Our Autism Journey” – I hope to have it written and moving through the gears and pullies of the system by April 2019.

Thank you to all who have followed me here and on Facebook.  Just seeing the “follow” or the like has been so encouraging through some very dark times.  Thank you.

Achievement unlocked: Level up

I finally got that nap and a sandwich.

Friday afternoon, I headed out with a clear conscience.  All my kids were home together for a weekend of sibling fun and I had the weekend off.  I headed up to Bonney Lake for an SCA event.  The local Barony had its annual Arts & Sciences weekend – competitions, classes, and socialization, and camping.

My boyfriend and I enjoy camping.  We started out with a small 1970’s 8′ by 8′ canvas, aluminum pole tent.  This season, he’s bought a 25′ Yurt.  I call it my cupcake castle because that’s what it looks like.  It has a wooden door that is round at the top.  Everyone who sees it, once they look inside, says “Oh MY! It’s bigger on the inside!” and it is! Something about the high peaked roof gives it a feeling of space.  From inside, it looks like a work of modern art.  It’s so relaxing to study the beams and the lattice work while listening to birds wake up when you’re warm and cozy all bundled up in layers of wool and linen.

 

I’ll be making a sectional canvas floor insert as well as a plastic ground cloth with sidewalls.  If you make low sidewalls with your tarp on the high side of the tent, you don’t get the rainwater running through all night.

Yes – I said rainwater.  I live in the Pacific Northwest – it doesn’t rain ALL the time, but there’s always a good chance any event you attend outside will be in the rain.  With camping, I never mind the rain – I actually prefer it to some of the warmer sunny days we’ve had.  I grew up camping on the Biloxi River in the piney woods in South Mississippi.  It didn’t rain as much as it was sunny, but when it rained it was Coastal squalls – thunder, lighting, tornadoes, and RAIN RAIN RAIN.  So a light drizzle for a week is nothing for me – more like heavy fog.

The weekend was spent being “bums” as my boyfriend calls it – we ate when we were hungry, we slept when we felt like it, we socialized and we didn’t.  I enjoy our local SCA events because I can be as involved or as solitary as I like and no one minds.  At one point, after slowly and carefully devouring half a bag of cookies, I napped in my chair for an hour to my boyfriend’s gentle snoring from his bed.  My chair is a 20 year old “Joe Boxer” folding chair from Walmart.  The back is a winking smiley face.  I’ve slept in that chair quite a bit and always had a good nap in it.

Because it’s what we do, my boyfriend and I woke up at 5 AM Sunday and packed up.  We like to get moving and packed before the sun is really up, that way we get a day at home to unpack and get everything put away and ready for the workweek.  I caught the sunrise over the valley as I came down the highway.  As I got home, the kids were just waking up.  Everything was as I left it and everyone was happy and rested and fed.

I needed that weekend.