Category: The Autistic Spectrum

First Official Week of School

Last week was a tough one as we had an extra bonus amount of work to “fit in” to our regularly busy schedule, with elections printing (Thanks Snap Election!)

Siah woke up with a cold on the FIRST DAY OF SCHOOL and was SO DISAPPOINTED. When I asked Jude what we were going to start our school year with, I was pleasantly surprised to have him say he’d like to start with Algebra.

We did not do as much as I had planned in my fairy tale dream world of perfectionist homeschooling; but we did get some done and for a child with PDA, I figure that’s pretty freaking good. Considering that I was busy working 14 hour days all last week.

As this week starts, Siah is still home with a cough but on the mend. Xani’s covid test came back negative – as we breathe a sigh of relief and curse whatever virus has invaded our home.

Jude’s School Day Reporting

I stayed home, today, and we actually worked through some school work with hardly any fussing. We are still acclimating to “school” and are easing into things. We managed to hit Math, Reading and Comprehension, novel studies, PE and our Conflict Resolution and Peaceful Communication Course. All in all a good day.

With my Humanity Faltering….

We took a Mental Health Day, today!

Jude had climbed into bed with us, at some point last night. First thing this morning, He opened his eyes, looked at me and said, “I just can’t go today.”

Like I mentioned yesterday, we have a kids day camp this week. It’s fun. It’s amazing. It’s epic. It’s theme is “Power Up”. They do Fortnite dancing, and crafts and have snacks and an epic water day. It’s AWESOME!

And in the last two days, my kid has used up any and every bit of emotional and mental reserve.

So, I declared today a Mental Health Day and we did nothing taxing; and only things that we wanted to do.

I have pretty firm opinions on parenting. I don’t like to put up with any garbage or judgement from others. It makes me sick when I see children being treated as bad or devious or evil. I do understand that there are some children who have been so hurt that they need extraordinary help and support; but so many children are spoken to as if they aren’t real people.

Real people who have rights, deserve dignity and autonomy. Real people who deserve respect and kindness regardless of whether they are non-compliant, misbehaving or just young.

But for all of my opinions, I’m still human.

I grew up with old school thinking that disrespects children. Thinking that says that I’m the boss and if I’m just tougher or more authoritative or just force a child to do something that they will get over their issue. Their issue, that isn’t legitimate anyway. They’re probably just faking it, in the hopes of getting away with something.

I don’t believe that line of thinking for one second. And yet, within the stress and chaos and exhaustion of parenting high needs kids, there are times that my resolve falters. I question my moral compass. I question my parenting skills. I question my ability to know or think or believe anything.

In that space, I allow the worry, the questions and the self doubt to surround me, for a moment, before I shake them off. Those thoughts don’t fit on me. I can’t wear them with pride, courage or confidence

**********

I believe that children, innately, want to succeed and do well.

I believe that if a child is not succeeding and thriving; that is not because they are intentionally misbehaving. They are struggling.

I believe that children try to do their very best and if we feel that their best is some how “missing a mark” then we must step along side and support them, in ways that are meaningful to them.

I believe that behaviour is communication and as the adults, it’s our job to detect what they, the children, are struggling to put into words and to help them…..not judge, shame or criticize.

I believe that our children should run to us when faced with problems and not try to hide from us, out of shame and guilt. It’s our actions, words and reactions that reinforce those beliefs and actions.

So in this moment of humanity, when I question my ability to parent my child, to help him to be resilient, to help him find his strength and his voice, to help him find his way in this world knowing that he is valued and loved and capable…….I pause.

I remind myself of what I believe and why I believe it.

I remind myself that it’s okay to not be okay.

I remind myself that taking a Mental Health Day is a gift and not a punishment.

I remind myself that I’m teaching my children invaluable life lessons by honouring them, respecting them and teaching them to be in tune with their needs.

I remind myself that this season will not last forever.

With my humanity faltering, but my beliefs unwavering, I carry on; doing the best that I can, in this moment and knowing that it’s okay to not be okay.

It’s okay!

You are Not Alone

I don’t know if it’s the loneliest road but being a parent of a special needs or disabled child is definitely a tough road to travel.

Gratuitous picture of Mac because why not….

I’m not talking about my child’s journey, at this exact moment. I’m talking about my journey as a parent of a disabled child…….multiple children to be exact.

I was talking with another parent this morning. It feels so dishonourable to admit that parenting a special needs child is hard because you are supposed to love and cherish and champion your children.

Which I do!

But I also spend a huge amount of energy advocating on their behalf. Unless you live this life, you really have no concept of what it’s like. This is one reason that I share so openly about our life; so that those who have no clue, can have some clue, if they want, about what it’s like to live with and parent disabled kids.

I also share so that other parents who are going through similar experiences can know that they are not alone. I know this because I have many parents share with me……..”I thought I was alone until I saw your post and then I realized that I’m not alone.”

Too often, we believe that we are the only ones going through this. And it’s not until someone is brave enough to say, “This is what I’m going through and it’s ugly and messy and beautiful and courageous all at the same time.” that we realize that others are on this journey with us and we are not alone.

And that is the beauty of community.

We all need community. We need to know that we are not alone. We need to know that others have walked the paths that we are walking. We need to know that others understand the exhaustion and the frustration and the pride that we feel for and with our children. We need someone to understand that we live within chaos and that there is still beauty within the chaos. That growth still happens within the chaos. That love grows within the chaos. That life continues within the chaos.

This is why I share. This is why I lay my soul open so others can draw strength and courage from the knowledge that they are not alone. That there is a connection within the loneliness and isolation of parenting special needs kids.

We all want to be loved and accepted, not in spite of who we are but because of who we are.

I see you.

I recognize you.

I validate you.

You are worthy of love and acceptance.

You are more than all you “do”.

You are doing your very best and that’s enough, even if it doesn’t feel like it.

YOU are NOT alone!

Navigating Educational Trauma as a Parent

Like anything in life there are sides to every story…..often multiple sides.

My post about Parenting Trauma within the Educational System seemed to hit a chord with many and I believe its a huge opportunity for conversation.

Within the Education System we have:
– kids who are traumatized
– parents who are traumatized
– educators, administrators and support staff who are traumatized

There’s a lot of trauma.

And……no ones trauma outweighs another. Every trauma is valid and some how we have to figure out a way to navigate a system filled with traumatized people, who are doing their best; and have the end result be a safe, inclusive space for all to grow and thrive.

It’s an unfortunate reality that, at any given time, our best may be super messy and awkward. Just like our little ones……some days, their best may be flailing around on a floor screaming. And that “best” is better than lashing out at another person. As humans, we have the opportunity to come along side and support those who are struggling.

Navigating trauma that has been inflicted on your child, is brutal. While there are times that people intentionally inflict trauma on others; I would say that the majority of trauma within the education system, is not done purposefully. People don’t go into education with the intent to harm kids.

Regardless of whether its intentional or not, trauma happens and when we know better, we must do better; which is why awareness, and communication are so important.

When trauma is triggered, the brain shuts down and communication and learning are impaired. This is true for kids and for adults.

I’m aware that I hold trauma in my body and mind regarding my children and the Education system. When triggered, I try really hard to pause before I react and to filter what I say and feel; or to find someone who can help me regulate But, there are times when past trauma is triggered and all I do is react.

When trauma is triggered, my brain goes into overdrive. My thoughts immediately start racing. At the same time, everything is a bit of a fog. My only goal is to protect my kids, at any and all cost. Unfortunately, there can be fall out. In moments of fight/flight, I may say things that rational me wouldn’t say. I can feel my heart racing and my body tenses. It’s not a pleasant feeling. I can literally feel the surge of adrenaline washing over me as I prepare to fight or flee.

It feels awful!

And I know that many of you have been there; and many of you are there.

My hope, in posting about this, is to bring awareness. Awareness to parents, awareness to educators, awareness to people who have no clue that this happens. I believe that with awareness, there is opportunity to talk, to communicate more openly; and ultimately, to grow and heal. In order for relationship to build and grow, there has to be communication.

I believe that the “end goal” is that we all want children to grow and learn and be successful.

In the midst of trauma, its easy to loose sight of that. The Fight/Flight instinct kicks in and we go into Battle Mode.

As parents, its beneficial to know if we carry trauma regarding the Education System. We need to know that the trauma taints everything we see, hear, say, experience…….

I’m not saying that there haven’t been “wrongs” committed.

Because there have been “wrongs”. That’s a fact.

But how do we, as humans, work together towards growth and relationship. Especially, when we have a child (or children) in the middle of it all.

How can we communicate respectfully with each other?
How can we hear each other?
How can we come to an agreement with each other?
How can we be partners rather than adversaries?

I know this is a lofty ideal.

I don’t know exactly how to make it happen. I don’t believe that what’s currently happening is working; and I want to be a part of a change.

Here are some of the ways that I hope to affect change.

Awareness – I think speaking about trauma and other issues; and sharing openly and vulnerably is important. I can’t tell you how many people message me saying they “get it” or are going through the same thing. They say that it feels so good to know they’re not alone on this journey. That means the world to me because I know that I’m not alone.

Relationship – I have purposed to build relationship on a peer level with the people in my kids lives. This doesn’t mean that we are “besties”. But, I want them to know me as Patti, the person; and I want to know them as the person they are. Making relationship critical, means that when I’m feeling hurt by something or someone, I have a bigger chance of “pausing” before I say something hurtful to another human. It’s easy to rail against a system……and less easy when you really see the person in front of you.

Respect – If I had to choose one building block to build my life on, it would be respect. I want to act and speak respectfully regardless of how I’m treated. I’m human and fallible but this is one virtue I make every effort to embody. I believe that if you are a respectful person, as a general rule, you will be treated with respect. If you can continue to be respectful, even in the midst of difficulty, you will gain more respect. It’s just the way it works. That doesn’t mean you need to be a doormat and let people walk all over you. Part of living a respectful life is also having self respect and knowing what to accept and what to let go of; but speaking the truth with respect is powerful.

I’m not a policy maker. I’m not a name or organization within the system. I’m just a mom trying to affect change within my realm of influence; and these are just 3 of the ways that I hope to affect change.

I do, wholeheartedly, believe in the ripple effect. We have an opportunity every year to bring awareness, and respect to our relationships with the educators/administrators, parents and support staff that we come in contact with. It’s my hope that awareness, respect and relationship are the legacy that I leave behind, with every grade that my children pass through.

Don’t ever think that you don’t have any influence. We do have influence. Be a force for change. Be a positive influence and see what happens. It may take time, but I believe that it’s worth it.


Parenting PTSD, the Educational Version

I recently received an email that sent me into an absolute tailspin.

I’ve just realized that with all the info blacked out, this email could be for any one of them, because all 3 of my boys have the same initials. All 3 have IEP’s and “school teams”.

Do you see anything wrong or even remotely threatening or negative about this email?

Nope! Neither do I and I asked for a meeting. Regardless, as I lay in bed, my heart started to race and the thoughts in my head sped out of control.?

What if they are upset with my child?
What if they are upset with me?
What if they are going to tell me that it’s too much effort to support my child?
What if they chalk his issues up to bad parenting instead of trauma?
What if they judge me?
What if they are tired of trying?
What if they put it all back on me to solve and fix?

And the thoughts spiral out of control until I’m choking back the tears and barely holding myself together.?

{I know that these are “what if’s….” and I really don’t want to live in the world of “what if’s….” because….what if it all goes amazingly well? And really what does it matter if someone thinks poorly of my child. I know the truth. But truth doesn’t always vanquish the trauma…..at least not right away.}

This is Parenting PTSD, the Educational version.In the past, I’ve had administrators and teachers say those things about my child. I’ve heard those things said to me, said about my child, and said when it was presumed that I wasn’t listening. To hear those things, destroys a piece of your heart, mind and soul. It breaks your ability to trust, to really even hear at all, let alone with an open heart and soul.

It is devastating to hear that people feel your child is too difficult, too much effort, or just not worth the effort.

While I know that currently, we have people on our teams who actually care for my boys, that past wounding, that TRAUMA is still there. It’s runs deep and it excruciatingly painful.

As a parent of a child with extra needs, you are already soul crushingly weary but usually with no real option or opportunity to rest. You are almost always in fight or flight mode. If for some blessed reason you aren’t there, it only takes one second to be activated …..sometimes when it’s not even necessary.

I’m extra exhausted right now and pretty close to the edge of tears, most of the time.

I’m not alone in this, either. There are thousands of parents, with kids who have challenges, who feel traumatized from dealing with the people within the education system.

We are desperate for people to truly see our children for the wonders that they are. We are desperate for someone to share all the good and amazing things that they see about our children. We are desperate for people to look beyond the challenging behaviour, to see what our children are saying, to listen and really hear their hearts. To champion them into becoming all they they can be and even more.

We are desperate for people to see our children as human beings; and as valuable, worthy and important as the typical kids.

On our end, it takes the courage of showing up and being there even when you don’t know if it will make a difference or if you’ll get hurt again. It takes vulnerability to share your hurts, your ideas, your successes and your failures.

If you work within the education system, know that you have parents and children who are incredibly triggered right now.

show love,
show compassion,
show mercy,
show grace,
show acceptance.

Invest in relationship.
Foster communication.
Build trust.
Be Respectful.
Be a life line.

And the benefits will be innumerable.

But recognize that there is Trauma and it’s not going anywhere soon.

Be a part of the solution, not the problem.

Executive Function

Ya’ll I’m exhausted. It’s been a week FILLED with one thing after another after another and while none of those individual things are critical, the combined weight is enough to drag me under.

So today, I’m going to share a post that I read yesterday. I think awareness is so important. You can’t truly understand something, unless you’ve lived or experienced it.

BUT……you can learn. You can try to understand. You can lay personal bias and judgment aside and really seek to understand.

Jon and I have said for YEARS, that our kids have the capability to be wildly successful in life but that they would totally benefit and need a Pepper Potts to administrate things for them.

Those of us without Executive Function Deficits can often organize and structure our own lives. We can juggle all the balls, even the boring ones. But for those of us who have reduced Executive Function, certain tasks can seem insurmountable.

It doesn’t mean that people with Executive Function Deficits are stupid. They may be “Different, but they are not Less“. I will harp on that until the end of time. It’s so important. We all have strengths and challenges. It’s a part of being human. we should never belittle others for their challenges……EVER!

Here is link to an incredible article by Mair Elliot on Executive Function and how frustrating, and unpredictable it is to live with Executive Function Deficits; how much effort is required on a daily basis, and how it can affect quality of life even though the individual may be intellectually capable.

Please read this article with the intent to learn and understand.

Different, not Less!

My Autistic Daughter

Today is my Darling Girl’s 22nd Birthday. I had BIG PLANS to post this earlier today but true to our chaotic lifestyle, today was chaotic.

Jude decided that he wasn’t going to school, so I attended Grade 3…..it was about as awesome as it sounds. We came home after recess and then I had to leave for an appointment with our psychiatrist regarding Jeremy moving towards adult supports. It was epic. As soon as we got home from that, I threw dinner in the oven for Gelica‘s Birthday’s Dinner and then ran out for a chiropractor appointment. We’ve finished dinner, sang happy birthday and now I’m banging this post out.

I asked Geli to share a bit about living as a autistic women. She self-identifies as autistic and I guarantee that if we knew more about how Autism presents in girls that we would have had her tested, when she was younger. In hindsight, there are SO MANY indicators but we just didn’t know. It explains SO much and would have been incredibly helpful information as we parented her.

Without further ado, to continue on with Autism Awareness Month….here is Gelica sharing about what it means to her, to be Autistic. It’s not a bad thing, or something to hide or be ashamed of. She’s incredible just as she is. She just happens to have a brain that processes things differently than a typical person’s brain…..and that’s okay! In fact, it’s fantastic!

I am Autistic.

It’s not something I usually lead with.

If I do, people are generally confused. There’s the whole “you don’t look/act autistic”, “don’t worry, I don’t think you are”, “are you sure…?” statements. I’ve gotten quite a few of these, and I only started self-diagnosing, like, 2 years ago.

But I am. It was a puzzle piece I didn’t know I was missing. But once I got that piece, so many things started making sense.

I look back at my childhood, and I just remember being a confidently quirky kid. I knew I was different and weird, but it’s who I was. So I ran with it.

But knowing that I’m autistic has just shifted a few things into clearer focus.

Horse Obsession

Like how I could wear the exact same outfit, every day, for almost 2 years of school.

Or how I was reading grade 11/12 books in grades 2 and 3. Which is frustrating when you go to a traditional school that filters what it puts in their library and you end up with 5 books in your reading level; or you can take three Geronimo Stilton books home and finish them all in one day and have to go back the very next day, because you can’t take out more than 3 books at a time

Or how I was obsessed with horses. (Mentally.) They used to actually frighten me a bit in person as a child

If you ask my mom, she has a whole list of things that actually make a lot of sense when you look at them through Aspie glasses.

I think being autistic played a huge part in me being able to stay caught up in school while going through cancer treatment

I can remember in elementary school, asking the teacher for more homework. I believe my mom even has video proof. But I can remember the homework I was getting wasn’t ever really a challenge. I had heard the information when it was first taught to us, so I didn’t understand why I needed to regurgitate the information onto worksheets. And so, I didn’t put any effort into making sure the worksheets were correct, so the teacher had no proof that I deserved more challenging homework. I was told to put the effort into the work I was being given, to aim for 100% if I was so smart. But I figured that was wasted effort, and so I just continued on with the boring homework.

But, because I wasn’t challenged or moved up a grade or anything, I was in a decent spot to teach myself grade 8 while going through chemo. In fact, I taught my tutor math, so she could teach her other stuck-at-home students

Granted, the school only gave me the bare minimum of all my coursework, and I don’t know how much of any of it actually counted towards the school barely passing me through grade 8. But I had done enough work that when I returned to school, it didn’t take too much extra effort to catch back up and raise my grades back up to almost A’s.

Currently, I think the biggest thing that discovering I’m autistic has given me, is the information.

I have an explanation.

For my introversion;
for my small-talk aversion;
for the way I think; the way I communicate;
the way I process;
the way I experience emotions and empathy.
It explains why I can not be a receptionist, but why I am amazing at my current job.

I don’t mind coming to this conclusion in young-adulthood. I think if I had been diagnosed as a kid, I would have been challenged more in school, and maybe moved up a grade. I would not have been able to keep up with my class through chemo, then.

But the one thing I think I did miss out on, was a more serious effort to teach me social skills. I seemed to always have at least one friend. But as a kid, I put no effort into making new friends. People came up to me, and made me their friend (and then they were stuck with me). So I pretty much always had someone to play with, but it was never intentional on my part; I would have been fine to sit and read by myself, honestly.

When I finished with cancer treatment, and re-entered society, it was a bit of a culture shock. I had been diagnosed as a pre-teen, when I was most upset about not being able to join a baseball team, because games were on Sundays and my parents were assistant pastors. So when I got back to school, and all that the girls were interested in were boys, make-up and grad dresses; I could not have cared less. But there was suddenly this huge, noticeable divide between myself and all the other students my age. And I suddenly actually felt like I was different.

I spent the rest of high school trying to figure out exactly how and why I was different. And nothing seemed to click just right. And forcing me to go to the church youth group was not going to suddenly fix the problem.
What I’ve come to realize, is that I was never taught social skills. I was never taught how to make friends. So now, as an adult, the one thing I wish I could go back and change, the one thing that might have made an earlier diagnosis more worth it, would be the ability to make friends. Because learning these skills as an adult, is really really hard.

I don’t know if I’ll go through with getting an official diagnosis. I’m still contemplating that. But I definitely am Autistic. And I am so thankful that I now know.

World Autism Day

Yesterday was World Autism Day. Some people like to Light it up Blue. Some want it Red Instead. I want people to be aware, accepting and appreciative of neurological differences, of all differences.

I get that not everyone likes everyone else. Nor should they have to.

BUT……when people (like but not limited to, my children) are mocked, disregarded, and excluded because “they are different“, we as a society need awareness.

My child was recently in a situation where he was trying to “fit in” with peers. Instead of acceptance, these peers were obviously annoyed and angry with his socially awkward attempts. These weren’t bad kids, but when you don’t know or understand; there is need for awareness. When you reject people because they are different or awkward; there is a need for acceptance. It’s especially difficult because his “disability” isn’t physically visible at first glance.

Invisible Disabilities are disabilities that are not often immediately apparent. These are things like (but not limited to) vision, audio or neurological differences. You can’t see them like a visible disability, like (but not limited to) a missing limb or paralysis.

As a society, we (often) have more grace for people with visible disabilities. We can give them understanding because we can see what they might struggle with. Too often we have little to no patience for those people with invisible disabilities. They are often judged to be weird or even stupid; and others often get frustrated when they do things that are deemed to be outside of “typical behaviours.”

It’s really not hard to kind. It’s not a hardship to be compassionate and understanding. It’s not difficult to be respectful of other human beings, no matter what their differences are.

I adore what Chris Ulmer is doing to normalize the diversity of the Human Condition with his organization “SBSK”. You can check his work out at

Youtube

Facebook

and on their Website

They say,

“We believe that when you take the time to hear someone’s story
and view life from their perspective, you learn and grow as a human.”

We need to recognize that diversity is beautiful and that every single person has something to give. Every person has value and worth. When we can take the time to look beyond the disability and to really know them then we will see their value and worth and appreciate what they bring into our world.

Superpowers

Lets start Autism Awareness, Acceptance and Appreciation Month with a video from my sweet boy, Siah. It’s always best to let the experts talk about what they know best. Some of this is very broad and general information regaarding autism and some is very specific to Josiah.

This was a Speech that Siah shared with his school for Speechfest one year. He did such a fabulous job and was so well received by our school community.

Every incredible person with Autism is unique and wonderful, just like you and me. We all have strengths and things that we can work on. We all have interests and dislikes. We all desire love, acceptance, respect; basically, to be treated like human beings.

In our family, we are very open about who we are, the challenges we face and the strengths we have. We are different, but not less.

What are YOUR Superpowers?

I believe that mine include compassion, kindness and understanding.

Fulfilled

I can’t believe that April is here already. This month has gone faster than I expected.

This weekend has been a busy one and I’m tired. Today I sat on my front deck, in the sun, listened to the silence and it was glorious.

I’ve enjoyed this month of gratitude. Being present and aware of what’s happening around me. Looking for the good even when things are tough. It’s been a good 31 days and I’m looking forward to continuing my gratitude practise but I probably won’t post daily about my gratitude.

Even though this month is up, I’ve really enjoyed posting. I used to post daily; back in my other life….when my big kids were little, and before the decade of trauma.

April is Autism Awareness Month. I recently saw something that referenced Autism Awareness, Acceptance and Appreciation.

I love the idea of growth and movement in our understanding of Autism.

There is definitely a need to bring awareness. It is so important that we accept diversity and the very things that make people special and unique. It’s important to not try and force people to conform to our understanding of typical and acceptable behaviour. But moving beyond awareness and acceptance, when you can begin to appreciate the beauty that individuality brings to our world; when you can see people’s strengths and not just focus on their challenges, that when we really start to “see” people. That’s an incredible thing.

So, I’m going to continue posting. I dunno if it will be everyday but I’ll figure something out.

I sure do appreciate you coming along for the ride. Don’t hesitate to comment or ask a question, if you have one. There are no stupid questions.

I hope you’ve enjoyed this past month of gratitude and will continue to enjoy April’s posting.

I’m so very thankful for you!