Autism Spirit

"Disability is not a dirty word.
The way society perceives disability is foul, though."

https://www.facebook.com/371675056766232/posts/1109867902946940/

For those who are interested in viewing the tribute service for Tracy Hutchinson Wallace, here is the link https://youtu.be/QR17QWJW1uU

In lieu of flowers, donations are asked to be made to two organizations near and dear to her heart-
Cause An Effect
Consortium of Disability Organisations

Please donate generously to support organizations she passionately believed in.

Tracy Hutchinson Wallace Tribute Service Monday 8th August 2022Belgroves Memorial Centre At 10:30 a.m. #10 Orange Grove Road, Trincity.Cremation At 12:00 noon.Belgroves Crematorium, #10 Orange Grove R...

❤️

On Sunday 31st July 2022, our co-founder Tracy Hutchinson Wallace lost her battle with cancer 💔

I've been trying to find the words and have finally accepted that attempting perfection while mourning is an impossible task. Even delaying would unlikely bring clarity. So instead, I choose to share in her memory.

In Aug 2013, Joaquin was diagnosed on the spectrum. At that time, I knew nothing about autism. Didn't know a single person on the spectrum and my first thoughts were honestly shameful and embarrassing because of my ignorance. Looking for local resources, I googled but the results were slim. I posted in Trini Moms and started every one of my posts "I'm trying to find out something for a friend" because I was ashamed and afraid to admit what was going on with my son. As the months went by, I started learning more and gradually felt a bit more comfortable to admit that I was "the friend" and that was when Tracy reached out in my inbox in Nov 2013. This was the end of that first msg she sent to me "Anyway, sorry about the long message, just wanted to say really that if you need to chat or anything, just buzz! Cheers! THW" and the beginning of a 9 year friendship.

18 months later, I broached the idea of Autism Spirit and she immediately agreed. She never even had to think about it. We had never met in person but we spoke almost every single day and she was the one who guided me through every initial challenge and triumph. When we met for the first time in October 2015, we literally msgd each other beforehand to warn ourselves that we weren't going to cry, which was futile. I was meeting the sister that God sent into my life... tears of gratitude were inevitable. As much as AS was my initial idea, she was the driving force pushing for change. We were 2 sides of a coin, a veritable tag team moving towards the same goal... initially she was the more knowledgeable, pragmatic side and I the more excitable, emotional, heart on sleeve side. But we rubbed off on each other in the best way possible and as I learned more, she became more open to sharing her vulnerable side. We were opposites, yet the same. Two personalities who complemented each other yet stood individually. Every time we had an interview, we would check in the day before to go over our points and one of us would always a la Pinky And The Brain: “so what are we gonna do tomorrow?” with the other responding: “The same thing we do every time, try to take over the world!” We simply understood each other.

Tracy was the person I could ask anything without feeling like an idiot and trust me when I say that some of those early questions were cringy. She was the person who fired me up when public call-outs were necessary and the person who calmed me down when tact and diplomacy were needed. And while our friendship started around common ground in autism, it grew to where she was a sounding board for almost everything in my life and vice versa. Fun fact - these conversations often veered into her passionately rambling on in French and me trying to get in just a word or 2 that despite a one at cxc, my french was limited to "bonjour" and "comment t'allez vous?" She inspired me daily with her passion and devotion to her boys. Her actions were always fueled by her desire to make this world a better place. And while I have been driven to do this for the sake of my son, she genuinely was driven to do so for the sake of anyone who doesn't have a voice. She believed in the goodness of people and gave of herself even when she hardly had anything more to give. Her optimism frustrated me at times but I always understood her motivation. If I leave even a fraction of the legacy that she has created, it would be monumental.

Just before covid, I told her that I needed to take a step back from Autism Spirit. The support I received when I wanted to start this was the same support I received when I needed a break. She never criticized me but gave me the space and encouragement I needed to focus on my son. In the early days, I believed that the lack of resources for autistics and by extension the disability community, was because people didn't know or understand our struggles. It was a bitter pill when the realisation dawned on me that people have always known... the question is whether they care. I had become frustrated and exhausted. Covid and knowing Tracy's prognosis sadly increased that frustration and I'm still at a place where I wonder what direction AS will take without my partner in crime. But I know that when the raw emotions don't feel as raw anymore that the answers will unfold guided by her presence

This feels like a ramble and hardly justice to the incredible person that she was. And this is where I hear her voice telling me "don't make me have to buff you eh". Laura described Tracy as a sugary, sweet princess and it's the whole truth right there. She hated pink but loved ballet. Yes, she was the fiercest woman I've ever know. She had passion and fight and epitomized what it is to be a lioness. But she was also the kindest, most selfless, soft-hearted person who has left this world a better place. She saw the good in every single person. The way she lived her life is a lesson to us all on compassion and grace. She tried to hide her emotions at times but she shared them unapologetically with those she loved.

Her very last message to me, a few days before her admittance to palliative care, was an apology. For what exactly, I have no idea. But ultimately she knows that apologies were never needed between us. We disagreed at times because that's what sisters do. And any disagreements never changed our love nor admiration for each other. I am grateful that she is now at peace, that her pain is no more.

I love you my darling and will miss you deeply every single day.

Your co-conspirator in advocacy
Michelle Foreman ❤️

Far be it from me than to judge any person's perspective on parenting, but as to my own experience, I just don't understand the concept of "once they're 18, my job is done". I absolutely realize there are some folks who have a plan. They plan to go to school, get a good job, meet someone and fall in love, have a couple of kids, raise them until they're done with school and then send them out into the world, marking the beginning of "MY time to live". If that's the plan and it works out ok for all involved, that's great. But that was never MY plan.

I had lots of dreams, as a kid. I wanted to be a singer. I wanted to be a writer. I wanted to marry a prince. I wanted to embrace my free spirit. More than anything, I wanted to be a mom. No matter what else I accomplished in my life, I knew I wanted to be a mom and that's really the only dream that has come true for me. So far😉 If I never achieve anything else in whatever time I have left on this earth, I'm ok with it because I have raised some amazing people. While the "raising them" part of this parenting gig may be complete, parenting will continue to be my primary function until my kids have to spoon feed me and wipe the dribbled pastina from my chin.

So does that mean there is no "MY time"?

Of course not. But for me, my time will always take a back seat to whatever my kids need. Period. That's MY choice.

Let's be 100% real here. When Spartacus was diagnosed, at age two, and as it became more and more obvious he would need lifetime care, my role as "full time mom for life" was pretty much locked in. It's not like choices are not available because there are some incredible residential placement options in the world. It's just not the option I can choose. My choice. And even with all the struggles my girl faces on her own, she will take over for me, when I'm gone. It is not a role I have "assigned" to her. She once told me she would always have her brother with her. I questioned her, "But what if you marry someone who is not exactly on board with that plan?" Her answer was, "Why would I ever marry someone who wasn't committed to taking care of my brother?" And let's not forget, my oldest would never let the girl shoulder all the responsibility. I am fully aware of how blessed I am, in that regard. But it comes full circle.

The girl has a bestie. The friend comes from a family who are not especially close. There is a controlling matriarch, in her mother's mom. A long line of dysfunction on her dad's side. Two older brothers who each have some issues with ADHD and anxiety, and the bestie battles anxiety and depression. You'd never know it, to meet her. She wears a positive demeanor, on the outside, but she's hanging on, for dear life on the inside. Last summer, just before she turned 18, the mom told her she wasn't happy with her life and planned to move 1500 miles away, to go work with her brother. She would live with grandma while she figured out whether it was a life that would make her happy. The husband had no plan to go with her. The mom was not discussing it with her youngest child to see what she thought of the plan. It was a done deal. So three weeks before her daughter's 18th birthday, the mom moved away.

Of course, the daughter was invited to join the mom. She was struggling with the decision, as she had just started classes at our community college. After two weeks, she packed her things and joined her mom. It lasted about a month. Grandma was in charge, in the new home. Grandma didn't like her clothes or her hair or her tattoos or her nose ring. So she came back to live with her dad. Six months later, her dad went to visit the mom. A week later, he came back to tell her he had gotten a job there. He missed his wife. The oldest brother had gone to live there, too. So both parents have moved 1500 miles away, leaving their two youngest kids, 22 and 18 years old, to live on their own in the family house.

But wait...there's more.

The father's dad was living in the basement of the home. The kids never had a relationship with him. He was a toxic person who found himself with no place to go in his golden years, so the family took him in. He had grown sickly in the past few years and had a full time nurse caring for him. But a few weeks ago, he died. And the responsibility of removing his body from the house fell on the 18 year old who didn't even call him grandpa. Calling the coroner, making final arrangements, cleaning out all his things...that was left to an 18 year old kid who felt abandoned by her family.

I have had conversations with this kid. I've told her she might want to extend some grace to a mom who married young and had kids because that's what she was "supposed to do". She raised her children and never did anything to fulfill her own needs, as a person. In the middle of her life, she felt a burning need to live for herself. I tried to explain how it can be soul crushing to reach a certain age and suddenly realize she hadn't lived at all for herself. And she said, "But I didn't just suddenly stop needing my mom because I turned 18".

My heart broke for her.

She's not wrong.

Our kids don't ask to be born. For some, the event of becoming a parent may have come as a surprise and not part of a plan, at all. But once we make the choice to bring that child into the world, being a parent is our job. Our responsibility. Not every child will be ready to relieve us of our duties on the day the US government deems them able to fight for our country. 18 does not mean, "my job is done". Some of those kids will need us forever. Some of them will be able to conquer the world at 16. If we've done the best job possible, our kids will be responsible and navigate life with mastery. Sometimes, even when we do everything in our power to prepare them for their own world journey, they will struggle and will still need us. Some parents will stand back and watch their kids struggle, simply because they believe they have done the parenting job, to completion. I am not that parent.

I feel for the mom, who feels like her life was never her own. I feel for the daughter, who wonders how her parents could have so little regard for her that they would just toss her into the deep end of life with some floaties and a "We'll send you plane ticket for Christmas!" I don't understand it. I don't judge the choices that were made. I just don't understand it. I could never be that mom.

So when do I get to "have a life"?

For me, my kids ARE my life. And let's not discount the life I had BEFORE the kids came along. I lived. I lived on the wild side before I became a parent. I didn't travel as much as I would've liked to, but I didn't sit home reading romance novels, either. I had friends and romance and jobs and exciting adventures. I may never have achieved greatness in my endeavors, but I lived. And once I became a mom, that became my life. Doing what was best for my kids was all that mattered, even when I failed. I failed, plenty, but I never gave up. I never tossed my hands in the air and said, "Well, you're on your own now!" And I never will.

Again, if your journey as a parent is different from mine, I have no judgment. We all have to live with our choices. I only know, I was raised by two parents who are still always there for their five kids and whose five kids would move the earth for them. My "job", as a mom has no expiration date. My kids are the center of my universe and that will be true until I'm their guardian angel, and then in a hundred years, they'll meet me on the next plane and we'll wreak havoc there. No matter what else I ever do in this life, I will always be their mom, and I pray I will always be the best mom I can be. Nothing else matters.

A new version of the Diagnostic and Statistical Manual of Mental Disorders released this month includes changes to the definitions of both autism and intellectual disability that experts say will further clarify the diagnoses.

https://www.disabilityscoop.com/2022/03/24/dsm-update-tweaks-criteria-autism-intellectual-disability/29770/

Please contact aflcrc.org to register for the Disability Synod Consultations for Families with PWDS on February 24, 25 and 26.

Here's a fairly comprehensive list of English-writing Autistic bloggers on Wordpress. Good information to have for other Autistics, parents & caregivers, and others, where you can hear authentically autistic voices.
Some of the writers are nonverbal, i.e. they do not use their mouths to speak. They type, they use AAC or other systems to get their points across and make their arguments. Bet you cannot tell who is who!
https://anautismobserver.wordpress.com/

Actually Autistic Blogs List A list of blogs by Actually Autistic bloggers

A rerminder ...

Amen!

And when I'm with my family, they wonder why I've grown quiet. Why I don't have much to say anymore. I simply realized they don't hear anything I say, so I don't waste my breath. None of them has had to do the research I have done. They have never had to wonder what will happen to their kids when they are gone. They are living in the simplicity of their lives, thinking about how hard they have it and they never consider that not everyone has the same simple fortune.
Everyone has s**t to deal with. Everyone has challenges in life. But I wonder how many people realize, if you have time to judge my life, your life can't really be as hard as you imagine it.

I'm always curious as to how other people manage to find meaningful, steady employment while focusing on raising kids. When you throw special needs into the mix, I just feel like the options really come down to some slim pickins.

A few years back, when I was working in The Land of Hairnet, there were a few times I had to leave in the middle of a shift.

"Mrs. Badger, Spartacus has had a seizure. We're calling an ambulance and you need to come, now."

"Mrs. Badger, Spartacus is having an uncontrollable meltdown and is hitting himself in the head. If you can't pick him up we will have to call 911 to keep him from hurting himself."

"Mrs. Badger, Spartacus came into school with no shoes on because he threw them out the bus window, on the way here. You'll have to bring him shoes."

Let's also remember all the chorus shows I had to miss because I had to reserve my emergency work exits for emergencies. Like shoes thrown out a bus window.

And then I get questioned. The ex, my mother, random acquaintances at social gatherings...

"You should try to get a better job. You're smart, why don't you get a job that pays better?"

Ok.

The questions and comments always come from people who have never walked six inches in my shoes. Single parenthood with special needs across the board...autism, SPD, OCD, Epilepsy, Anxiety Disorder, Depression...and my FAVORITE, sleep disorders. Nobody sleeps in my house. Even the dog gets the zoomies at 2 AM. The boy has special needs, the girl has special needs...and me, I'm just carrying it all. By myself. You will RARELY hear me complain or even talk about how hard it is, but it gets heavy. It just doesn't help anyone if I'm bitching about it. I choose to focus on all the blessings. To look at me, you would never know how much I carry on my shoulders.

But then come the comments. The questions. The absolutely blind misinterpretation of what my actual life might look like. Most days I can ignore it. Some days it just adds to the weight I'm already lugging.

They don't know.

They get tiny glimpses of the stressful nature of all I'm juggling. Oh, and did I mention the blessing of my aging parents? Yup, I'm running for them, too.

"Honey, can you call and make an appointment for me to get the vaccine?"

"Can you call the VA so your father can get new hearing aids before I kill him?"

"Honey, can you stop by after work? I pressed something on my phone and now it's talking to me in Spanish."

And I don't complain. I'm happy to do what I can because I realize how blessed I am to have them. It is NEVER a burden to do whatever I can to help. That doesn't mean it isn't heavy.

You feel?

I am always grateful. Grateful every damned day for these kids I love so much, even with all the special needs, I wouldn't trade them for the world. I am grateful for my parents and for every day I get to love them, even with all the increasing needs. It's only when I am judged, and my life completely misunderstood that I wonder how anyone can presume to suggest I am not doing enough. It makes me wonder when the last time might have been that those people looked at the privilege of the simplicity of their lives. I wonder what it might be like to sleep at night like they do. I wonder what it might be like to be able to just drop everything and go to a Christmas party. I wonder what it must be like to not have to worry about having the bills paid every month.

But when those ponderings bring me back to my own reality, I realize I wouldn't ever trade places with them. If a simpler life means having time to sit back and judge how other people are living, nah. I'm good. I don't begrudge anyone the fruits of their hard work and good fortune. I am always on the sidelines, clapping for the success of everyone I know. I'm usually in the mix, offering whatever support I can. And I'll be damned if I'm going to let anyone else's petty opinions and judgment change who I am. It just sure would be nice if the same unconditional support was ever reciprocated. You know...without the whispers when I leave the room.

Last weekend, when I slept at my sister's house, I had to run out in the morning to show a building for sale to an investor. I've told the story of all I had to do to make the visit happen in the first place. I don't think I've mentioned how I had get up early, (after not sleeping all night because Spartacus was out of his comfort zone), and drive from Brooklyn to Bayonne, NJ to show the property. No sale. I then drove back to Brooklyn to pick up the kids and my parents and my brother to take them all home to Staten Island and back to our home in New Jersey. I didn't mention how my girl unloaded on me once they were all out of the car.

"When you were gone, they were all like, 'Your mom should be doing better. She has so many opportunities."

Let's just say, my mini Badger let them have it.

Always nice to know what family thinks of me.

They know nothing. They don't know how many days a week I am functioning on two hours of sleep. They don't know the meltdowns TIMES TWO I fought through just to get out the door in the morning. They don't know I'm popping baby aspirin every day, just trying to avoid the stroke, to which my middle aged body is certainly entitled. They don't understand the nature of Anxiety Disorder or the depression my daughter battles and what it takes out of me. It must be me. I must not be handling it right. I'm too easy on her.

And when I'm with my family, they wonder why I've grown quiet. Why I don't have much to say anymore. I simply realized they don't hear anything I say, so I don't waste my breath. None of them has had to do the research I have done. They have never had to wonder what will happen to their kids when they are gone. They are living in the simplicity of their lives, thinking about how hard they have it and they never consider that not everyone has the same simple fortune.

Everyone has s**t to deal with. Everyone has challenges in life. But I wonder how many people realize, if you have time to judge my life, your life can't really be as hard as you imagine it.

Walk six inches in my shoes.

Spend a day with my kids. Not just one of those family gatherings with all the accommodations, but in their natural habitat. When no one is looking.

But, you know. Nobody is THAT invested. It's not THEIR life. It's not THEIR problem.

And that's ok. I don't expect anyone to go that extra six inches. It sure would be nice to drop the judgment and holier than thou opinions, though.

Tomorrow, I will shake off the added weight of having been judged. What other people think of me is none of my business, as the popular meme tells us. I'll go back to dancing in the car and being happy and thankful, just to open my eyes every morning. So, I guess this will serve as my Thankful Thursday thought of the week. I'm thankful that I am minimally affected by judgment. Just out of curiosity, though, how many of you out there know exactly what I'm talking about?

Processing speed is different from processing ability.

Sometimes, when a person realizes I have poor processing speed, they automatically assume I have poor processing ability. Their tone becomes more singsongy, their vocabulary more childlike, and their expressions more performative – thinking this makes it easier for me to understand.

It's like they've never considered the possibility that a person can be both smart and slow.

I can't handle a barrage of facts, descending haphazardly into my mind like Tetris. I freeze up, game over.

However, I can handle extremely complex information if you give it to me one bite at a time... with pauses in between to digest each new fact.

Everyone deserves respect, regardless of processing speed or ability. But remember that those are separate needs with separate accommodations, and they don't always overlap.

neurobeautiful.com/book

(Originally posted on 4/23/21.)

A lot to think about here.

Nominations are now open!!! Read more on how you can nominate any special needs child for a specially adapted toy and a personal care package because every child has the right to play and happiness!

Adapt-a-Toy is back this Christmas!

🧸 Last year we were able to provide specially adapted toys for a group of 15 children with special needs because of the outstanding support we received from members of the community.

🎄 This year we’re excited to reach even more families and work with even more community sponsors to provide not only *toys*, but *personal care* supplies for any child with any special need.

📢 Our process is this simple: In the month of October, we have our call for nominations. Any child with special needs can be nominated by filling out the Google form attached.

https://docs.google.com/forms/d/e/1FAIpQLSfMT9T5ov6x7AtjTQVbHNpf78SgRr3dSF31gzDuw2uMQ20feQ/viewform?usp=sf_link

✅ In November, we’ll compile the list of items needed and reach out for donations from anyone interested in helping out.

🎁 in December, we deliver the gifts because every child has the right to play and happiness

Autism is not a look or a behaviour. About enforcing 'Masking'. In the press, news that a team have found a way to give fewer diagnoses to autistic children. "Autism therapy aimed at infants may reduce ...

https://neuroclastic.com/2019/05/04/its-a-spectrum-doesnt-mean-what-you-think/

It's simpler, and yet also more complicated... Read more at the link! ☝🏾☝🏾☝🏾

Some of you may already be aware that our co-founder Tracy Hutchinson Wallace has been fighting cancer in the last year. Her story continues to be one of courage and optimism and an undeniable spirit to beat the odds. Please take a read as she shares her journey thus far and feel free to post your virtual hugs and love below

https://catholictt.org/2021/07/08/beingtracy-birthday-thoughts-stages-of-grief/

#BeingTracy - Birthday thoughts & stages of grief - CatholicTT By Tracy Hutchinson Wallace So, tomorrow (July 9) is my birthday. Not a unique or significant number. Middle-aged. Old enough to be a grandmother (which I […]

Autism Research: Nothing About Us, Without Us! Today, the new membership of the Interagency Autism Coordinating Committee (IACC) was announced. The IACC is a committee that advises the federal government on autism issues and oversees federal autism research spending. Since its creation, ASAN has called for greater self-advocate representation on

We have spent a lot of time discussing the cognitive weakness of delayed information processing that often creates confusion for people on the spectrum, but there is another very important cognitive function called the "executive functions". As you read through these you will probably recognize these deficits in your children. The brighter the child the more frustrated people get with their limited executive functions. People expect more of them because they are bright.