The ACT’s report on their investigation into this “inappropriate structure” was released Tuesday, September 8. The report concluded the principal, who has been removed, was solely responsible for the decision to build the construction and hired an external party to build it.
The ACT also completed an investigation into the use of “withdrawal spaces” in other government schools but found no evidence of their use elsewhere in the system.
If you’re a newbie to autism, there are many assumptions about autism that have been fueled by stigma. I’d like to tell you a little bit about myself and how I differ from them.
1. Autistics avoid eye contact.
While true in many cases, it isn’t a given! For example, I’ve never struggled with it. I have no trouble looking people in the eye, and only close my eyes or look away so as to shut out other distractions while I’m trying to think of what to say while talking to someone. I feel totally comfortable exchanging glances.
2. Autism causes one to not want to socialize.
Not for this girl! I’ve been a social butterfly since day one. While I do have trouble reading between the lines and picking up on social nuances, I’ve never hesitated to walk up to someone and say hello. In fact, when I was about 9, I was on this kick where I’d ask random strangers their shoe size! I’ve also maintained friendships for many years and loved being a part of groups. I’m also a chatterbox!
3. Autistics always experience sensory overload and meltdowns.
This has never been the case for me. While I have certain tastes, sounds and textures that are rather unbearable, I’ve never experienced what a lot of people describe as overload. I’m a sensory seeker. I love flashing lights, feeling various fabrics and smelling scents that I find pleasant. I have meltdowns, but they’re more emotional. Sensory stimuli does not trigger them for me. When I melt down, I start crying whenever I feel that I’ve let someone down or my feelings have been hurt. It takes some time and reassurance until I pull myself together.
4. Every autistic has a savant skill.
Not always. While I have an affinity for Sonic the Hedgehog and am pretty versed in the Android operating system, I wouldn’t say I have a skill that I’ve mastered way beyond the point of my other skills. Special interests, yes, but I’m not a genius in math or can take apart a machine and put it back together. I have skills in a variety of subjects.
5. One outgrows autism.
Never! A lot of people assume that just because someone has learned to cope well with their environment and has survival skills, that they have outgrown their autism. The truth of the matter is that one learns coping strategies and how to navigate the social world as they get older. Many people, myself included, fall under the radar for many years before receiving a diagnosis because they’ve learned these mechanisms and have gotten by with the tools they’ve gained. People’s traits can also change over time. One may stim by flapping their hands as a child and then move on to fidgeting with a pencil later on, or vice versa. I used to pick my fingers really badly, but with medication and substituting fidget toys for the picking, I’ve cut down greatly.
So, there you have it! Here are just some examples of the beliefs that can exist out there and how they aren’t always the case. I hope you’ve learned something, and if you ever have any questions about autism, the best source to go to are autistics themselves!
It’s fun to see photos of smiling faces and breathtaking views from mountain tops at sunrise. I occasionally enjoy seeing a photo of a glistening filet of salmon nestled in a bed of artistically arranged kale and quinoa posted by a proud home-chef. And sometimes I chuckle at a cartoon posted by a friend.
But Facebook, to me, is more than a social connection with people I thought I’d never hear from again. It’s more than a chance to peek into the lives of former classmates or colleagues. And it’s a great deal more than laughing hysterically at autocorrect text bloopers.
As a mom of a child with a severe disability, Facebook is my salvation. It’s my connection to a world of people who have an understanding of a current challenge I am facing, parents who’ve experienced something I’m struggling with and families who’ve tried various solutions to obscure problems only those with medically fragile children can relate. It is also a forum to vent to people who “get it” because they have been where I am.
Thanks to Facebook, I have met other parents of children with Pelizaeus-Merzbacher disease (PMD) who hate the disease as ferociously as I do but adore their sons with an equal amount of love. Because of Facebook, my son Jacob has “PMD brothers” all over the world.
Jacob was born in 2002, a couple years before Facebook was invented. At the time, Google was in its infancy and I performed only minimal medical research online. Medical journals were not widely available in electronic format, and information exchange was mostly over the telephone and only occasionally through email.
I didn’t know anyone who had a child with challenges. I didn’t know anyone who was fed by a tube surgically implanted into his stomach because he couldn’t swallow. I didn’t have a chance to converse with other mothers who shared my sense of failure for not being able to nourish their children in the usual way.
In 2002, a suction machine was a scary piece of equipment, and I was terrified to use it. My hands trembled as I tried to snake the plastic tube into my son’s nose and down his throat to vacuum out the mucous that impaired his breathing. I would’ve loved to share my fears with other parents who understood what I was feeling. Maybe they would have been able to help me overcome my anxiety around that dreaded but lifesaving appliance.
I didn’t know anyone who had a child with such intense needs that he couldn’t be left alone even for a few minutes while he was asleep. I had no idea whether I would ever adjust to the new life I was catapulted into, and I had no clue how to figure it out.
Those early days were scary, depressing and isolating. Over time, I developed the patience and skills to comfort my son when he was in agonizing pain and screaming relentlessly for hours. Eventually, I conquered my fear of the feeding tube and was even able to replace a broken tube in less than a few minutes. But it took years before I was comfortable with the suction machine, something I use for hours every day at this point in Jacob’s life.
I can’t help but wonder whether it would have been a bit easier if I knew others in similar situations when Jacob was younger. I think about how things could’ve been different if I’d had a network of experienced parents with whom I was able to share my fears and celebrate my son’s “inchstones” (moms like me don’t celebrate milestones). I knew there were others in similar situations, but I had no way of meeting them.
As the years went by, technology started developing in ways that opened up the world to me. It started with a Yahoo chat group for families who had kiddos with PMD. It was the first online resource I encountered where people gathered for support, feedback and suggestions related to the challenges involved in raising a child with PMD.
I recently realized that Facebook is my invaluable resource. When Jacob was having feeding issues, I posted my questions in a Facebook group for Tubies. When I had a question about Jake’s scoliosis, I posted it in another group. Of course doctors have this information and always answered my queries to the best of their abilities, but getting a perspective from people who are living the answers has its benefits. Hands-on, real life experiences are key for moms like me. I access this information and add it to what I already know. It helps me make the informed decisions that I have to in order to care and advocate for Jacob.
The past 300 days have been the hardest of my life. Jacob was in the hospital for 237 of those days. He spent over seven weeks spread out over four visits in the intensive care unit with machines helping him breathe. And through all those excruciatingly long and harrowing days, I was never alone. Even when I was the only person sitting by his bedside, I had a gigantic network of people who understood what I was experiencing and people who were only a message away. I constantly received messages of support, read snippets of their experiences and was comforted when I saw a new “like” to an update. (As an aside, I wish there was a “dislike” button for heartbreaking posts.)
Facebook is my lifeline to the world of medically fragile and special needs children.
“Raise your hand if you know what autism is,” Jackson says in the video below. “It makes some parts of my brain work really well and some parts my brain work not very well. Doctors don’t know what makes some brains have autism and some brains not have it… Sometimes I need help learning things that other brains automatically know. The autism in my brain is something that I like, and something that I don’t like, but it’s part of me, just like your brain is part of you.”
Check out more of Jackson’s story in the video below:
I don’t mean that in some sort of grand, metaphorical sense. I mean I will sometimes forget what I care about or lose the thread of narrative in my life. I’ll wonder if I’m still the same person I was yesterday. Sometimes it feels like I’m not really me, as though my mind has shimmered out of my body and hovers just a few inches over my head.
I have borderline personality disorder, and one of the traits is having an unstable self-image. That means you have a hard time telling what your core traits are. It’s frustrating and confusing. I can never tell if I’m actually intelligent or just good at school (until people remind me over and over again). I have no idea if I’m a good friend or a good person, and I cannot for the life of me imagine how I might appear to other people. Not only is it disorienting and frustrating, it also means I’m constantly second-guessing my own abilities and traits. If my boyfriend doesn’t remind me he loves me on a regular basis, sometimes I just forget. It can be incredibly annoying.
In the movie “Memento,” the main character wakes up each day with no memory of his life. He doesn’t know who he is or what he wants. In order to remind himself, he tattoos himself with all the important information in his life. It sounds like a silly plot device, but without realizing it, it’s how I started to remind myself of who I am.
I got my first tattoo when I was 18. It’s a tiny music note behind my ear. I was in a bad place when I got it, falling into my first bout of serious depression. Changing my body was my way of feeling in control. And it wasn’t just a music note — I got a dotted sixteenth note. I played piano for 13 years and always loved syncopation the most. It’s what made the music interesting and quirky. That’s what I wanted to be. I always have. Now I don’t play music, but I love the way I feel when someone asks me about the note. I remember I love being offbeat.
My second tattoo came after I had fallen deep into an eating disorder and started to come out the other side. It’s the eating disorder recovery symbol, hidden on my hip where only I see it. During the early stages of treatment, I could barely hold on to simple facts about myself. It seemed as if minute to minute my priorities would change. One moment it would be so clear I needed to lose weight, and the next there would be a sudden realization I needed to be healthy. These facts flicked in and out of my mind so quickly I couldn’t tell what was real and what wasn’t. When the needles first bit into my skin, it was a certainty I couldn’t go back from. I still regularly look at it or touch it when I’m in the midst of a fight with myself. It helps remind me even if today I want to starve myself, tomorrow and the next day and the next day I do want to be alive and healthy.
My third tattoo is all thanks to my therapist. You see I’m a perfectionist, someone who wants all the answers. But I also tend to forget every good thing I’ve ever done, which means many of my days are spent striving to “earn my keep” in some metaphorical sense. I always want to reach the destination, the answer, the “right” thing or version of myself. So instead my therapist made me imagine myself as an explorer, someone whose job it is to simply go look, try out new things, see what it’s like but then come home. The image stuck with me. That’s why I have a compass on my arm. I look down and think, “I’m going to explore this idea today,” instead of “I’m going to figure this out today.”
I don’t know if I would forget all these things if I didn’t have tattoos, but I do know having them permanently marked on my body makes them easier for me to internalize. It helps me remember who I am. It helps me build up an identity instead of ripping myself apart every day to try to build a different, better, somehow perfect version of myself. I feel as if I’m writing my own self every time I get a new one. It’s physical, forever and real in a way my internal monologue will never be. My tattoos are part of my treatment and part of my recovery. It might seem unconventional, but many methods of self-care are, and this one works for me.
Parents of children with special needs, indeed anyone caring for people with chronic illness and disabilities, know that our life journey can be much less like a race to the finish and more like a marathon. That said, I couldn’t help my brain from seeing parallels as I jogged along the 5K race route through our hometown of Jamesport, New York, last week.
I was more prepared for my first 5K last year, having run three or four times a week for eight weeks before the race. This year, my own struggles with multiple sclerosis fatigue and the untimely death of my sister made training more difficult. However, those same factors and my daughter Johanna’s ongoing issues with cavernous angiomas and hydrocephalus compelled me to run the race to the finish.
While I had planned to run the 5K pushing my daughter in an adult running stroller, that just didn’t happen (we used her wheelchair instead). The night before the race, I asked her if she still wanted to be in the race with me. Johanna gave me her proverbial thumbs-up. Our only practice was me jogging up the street as I pushed her in the wheelchair. It wasn’t easy, but that’s when I decided we would get through it together.
I learned a few things about life as a parent to a child with special needs — from our first push to the finish — and I’d like to share them with you.
1. Fear nothing.
As I lined up with the other runners at the start of the race, I purposely positioned myself off to the side so as to not run into someone with the wheelchair. I’ve been known to be an absent-minded driver on two wheels as well as four.
With those first strides and pushes, I was immediately struck with fear. My heart was racing, and I felt like I was going to faint. Negative thoughts raced through my mind faster than my feet could carry me. I was afraid that my legs would give out and I would overheat quickly. I was kicking myself for not preparing better by training with Johanna.
Then I glanced down at Johanna laughing and waving to people on the sidelines. I thought of how much courage is bound up in this 19-year-old young lady, who has had more brain surgeries than most people have years in their life. In that moment, as we rounded the first bend in the road, I made a decision to dismiss all fear and press on to the finish.
Dismissing fear is essential to pressing on to the finish.
2. Do what you can, not what you can’t.
This is my go-to decision and one of my secret formulas for any problem in life.
After dismissing fear, I assessed our abilities as a team. Johanna was fine and, in fact, she was truly enjoying this race. I drew my inspiration from her as I told her that we would do a light jog and a fast walk the whole way. And I told her that if at any time she was uncomfortable, I needed her to tell me.
Living with chronic disease has taught us that any plans can always be altered; we just need to lead with our strengths and find the best ways to do what we can do to complete the tasks ahead.
Those who have read my book or attended my workshops know that the first step to breathing while you feel like you’re drowning is to believe.
To accomplish anything, I think we need to believe in ourselves and that every struggle has a greater purpose beyond this life. I believe Johanna and I find our greater purpose in a living relationship with God.
Dismissing fear, deciding on a strategy that we could do and finding purpose in any difficulty has become a way of life for us. Since before Johanna was born, she has inspired me to believe. This day was no different.
I believe prayer is the key to our dialogue with God, and it inspires us to believe life holds a greater purpose.
As I jogged and pushed, Johanna remembered people by name as we prayed our rosary. I struggled to talk as we prayed, but the prayers and Johanna’s belief that we were running for a purpose kept me going.
4. Accept help and soak up the encouragement along the way.
Being a caregiver/parent to a someone with special needs can be exhausting. Anyone who has ever dealt with challenges beyond a day knows we all need help. I was reminded of this simple fact as people along the route were cheering us on. Volunteers and families were all so encouraging.
As we kept moving, there were water stations along the way. Rather than taking time to drink it, I poured it over my head, much to the giggles and laughter that consumed the princess in her chariot. We all need to accept help and encouragement along the way.
5. Persevere until the end and anticipate the bumps in the road.
This wheelchair wasn’t meant for running. I took one corner too quick and Jo almost went flying! So I refocused my pace and looked slightly ahead to avoid literal pitfalls in our journey. None of us can predict the future, but the more we persevere, the greater ability we have to plan for the obstacles ahead.
At the end of our jog, I asked Johanna if she wanted me to run the rest of the way towards the finish. She answered, “Yes!” with great excitement in her voice. As I ran and pushed her to the finish line, my little inspiration put both her thumbs up in the air.
My perseverance was rewarded, not so much in the sight of the finish line, but in the smiles on my daughter’s face.