Category: Siah

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.

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!

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.

Baking

Today I have 2 things I’m grateful for; but they’re related so I’m counting it as one.

I’m super thankful for kids who like to bake. It means that we have lots of baking around. Siah has been watching “Nailed it” and has even tried his hand at a layered cake. He definitely “Nailed it!”

Another thing that I am SUPER GRATEFUL for is my cookie scoop.

Do you have one?

They are AMAZING! No more rolling balls with hands or messing with two spoons…..just scoop and drop. Baking is so quick and easy with the cookie scoop. If you don’t have one, get one! You will thank me.

What are you thankful for?

Good from Bad (part 2)

I’m wanting to put this down here so that I can just walk away from it over the next 2 weeks.  

It’s not that anything HORRIBLE happened but it seems to me that it’s a lack of knowledge…..or, it could be that everyone was tired and emotional.  But my responsibilities lie with the little one in my charge and I have the honor of standing up for him until he can stand for himself.  

My biggest issue with what happened yesterday is the misunderstanding of what was really going on.

I believe children want to do their best and if for some reason they are acting in a way that doesn’t fit the situation……we, as adults, should be asking ourselves “what’s going on under the surface?”

Children want to please, they want to succeed and so often their “negative” or “inappropriate” behaviours are a result of their insecurities and anxieties over a situation that they can’t figure out, control or succeed at.

If our first response was not one of frustration or assumed disrespect, I believe that so many tense situations with our kids could be dissipated before the kids got stuck in fight or flight mode.

Siah was sad and overwhelmed and running away from those feelings and emotions.  The harder people tried to force him to face those feelings, on his own…..the harder he dug his heels in.  The moment that I joined him, in his feelings, and helped him to carry and process those feelings is the very moment that his defences started to come down.  

This is not something that is solely applicable to Siah….this works for every child.  

  • Believe that children want to succeed.
  • Believe that children want to please.
  • Know that something else is going on, if they are acting contrary to those two beliefs.
  • Attempt to determine the cause of the anxiety or anger
  • Empathize with the child ( you don’t have to fix the situation, validate their feelings and check in with the child to make sure they feel understood and that you have the correct read on the situation)

I have found that this works almost 100% of the time to dissolve anger and anxiety.  

It’s almost impossible to work through anything or to teach a child when they are in fight/flight mode.  And anxiety in children often presents as anger.

Anger is usually a secondary emotion to fear or sadness and usually presents when a child is feeling out of control.  

Empathy and empowerment are two of the most critical tools when working with children, in my opinion.

As adults, it’s our responsibility to work with the children and to adjust to their needs and deficits while continuing to teach and encourage in those areas of deficit.

They are the vulnerable and needy. We need to put their needs first. 

I believe that there may have been a personal desire to be in the assembly which may have prompted personal feelings of anxiety for missing a special event.  But…..if the focus had been on why Siah was struggling and not on “just getting him back to the assembly”….the entire situation could have gone down very differently.  

Think of a tug of war over a canyon….with the child on one side and an adult on the other….the canyon is the event or idea that is causing the anxiety…..the harder the adult pulls the child,  the harder the child will pull back trying to remain in a place of safety.  They will quickly lose all ability to reason and rationalize as they struggle to find a place of safety.  If the rope is laid down and the adult crosses over to the child,  they can stand together on the edge of the cliff and talk about the issue without the fear of being pulled into it. Once the adult lays the rope down, there is nothing for the child to be struggling against.  They may be SO terrified that they don’t realize the rope has been laid down and it may take a moment to help calm them enough to see that……but it’s SO MUCH easier to do that beside them, then across the canyon. 

Siah did go in and sing “What a Wonderful World” and I’m so glad he did.  He sat with me at the back of the assembly and enjoyed the videos and the music.  At one point, he leaned over to me and said, “Something good always comes from something bad…..the good thing in this bad situation is that I’ll get to meet a new principal, right mom?”

In the middle of his stress and anxiety and internal chaos……he’s still looking for the silver linings.  I love that.  

Our children will struggle – that’s a given – and some more than others, but it’s our job to stand beside them and to help guide them through, until they are strong enough and confident enough to do it on their own.  It’s a privilege and honor to be able to be there for them, especially the more vulnerable ones.  

I’d love to hear your thoughts on this…..not necessarily Siah’s particular situation but this idea…..this idea that children inherently want to please and that we can help or hinder the situation with our actions and reactions.  Is this a foreign concept to you? 

I’d challenge you to try it then next time you come up against a child who seems defiant…..it will blow your mind!

Good from Bad

I’m SO ready for this break.  Not that it’s really a break…..what with kids home from school and then this little thing called Christmas.  But this fall has been a busy one and it’s not been easy.  I’m ready to jus step off the crazy train for a moment and just BE with my family.

Today was a tough day for Siah.  Any day that’s off schedule and out of the norm is tough, but this last week of school before winter break has been one filled with assemblies and parties and treats and crafts and singing…..

While that sounds fun, for Josiah, it’s overwhelming.  To make it even worse, his Principal is retiring and today was her last day. He LOVES her and in a lot of ways, she has been his lifeline at the school.  While teachers, friends and classrooms changed, she was always there…..caring for, championing and encouraging him.


He’s mentioned a few things that have made me wonder how much anxiety he was carrying over her retiring, but I think he’s internalized a lot more than he’s let on.  

I’ve brought it up a number of times, to remind him and to allow for opportunity to process.  He understands from a conscious level but I think that he’s been struggling to process the feelings and emotions.

There was an incident at school today and I don’t have all the facts, but I heard another student looking for “Siah’s mom” and when I left the assembly to see why I was needed.  I was informed that they were just going to try and call me because Siah was very upset.  

I found him in the stairwell, clutching the Lego creation that he associates with his Principal and acting quite belligerent.  

I was almost 100% certain that his actions were entirel because he was overwhelmed with feeling and emotion and unable to process those feelings without help. 

He was refusing to go back to the assembly and quite upset that people were “forcing him” to go back.  The part in all this that’s so tough for me, is that this is a little boy who doesn’t quite understand or speak the same social/emotional language that the rest of us Neurotyoical People do.  He looks like he should and some times, he knows enough to fake it…..but really, he’s lost and has no clue.  So here he is and he’s run headfirst into an extreme emotional scenario (a retirement assembly) but add into that, that he feels devastated that she’s leaving and terrified of what the new year/new principal will bring. 

Now demand that that child, who doesn’t understand the language, his feelings or the situation……demand that he face his fear  and do it NOw, in the language that he doesn’t understand.   

He says that someone told him they were really disappointed with him.  That is brutal for a parent to hear.  I don’t know that’s exactly what someone said or if it was inferred.  What I do know is that what Siah received and he felt shamed because of it. 

When I found him in the stairwell, he was so on edge and definitely in fight/flight mode.  He was refusing to go back to the assembly and I knew that there was a bigger issue.  He’s been walking around our house singing “what a wonderful world” for the past 2 weeks….and commenting about how it’s the principals favourite song and that they were going to sing it for her. 

I tried to see if he would come with me but no dice.  Then I asked him if he was sad and feeling upset because the principal was leaving.  At that point, tears started to run down his cheeks.  I asked if I could give him a hug and he put aside the Lego and allowed me to comfort him while the tears fell.  I tried to convince him to come back to the assembly but he was scared and refused.  I told him we could sit in the office but when we got there, it was locked.  So I suggested we sit in the hallway.  He agreed to that.  I pulled him into my lap and talked to him a bit more about how this moment would never come again and that he would be so sad if he couldn’t sing the special song.  We heard them start the song and he agreed to come inside the gym, while holding my hand, if I stood with him.

So we sang with the rest of the students.  I let him keep the Lego creation.  The main issues in my mind were calming him down, haveing him be apart of this very special celebration and recognizing & understanding his emotions while acknowledging that it was ok to feel sad and overwhelmed.  

He told me that he was told he couldn’t have the Lego as fidget and while I understand that it’s neither discrete nor small……it’s definitely tied into today’s bigger issues. 

I may come back and post some more about this more tomorrow but for tonight, I’m going to head to sleep because I’m falling asleep on my phone.

Any thoughts?  Questions? Comments???

D-Day

If there was ever a night to allow myself an “out” this would be it.

But as I sit in my bed, listening to some trance music that Jon has playing while he codes, working on a project for a contract that he’s taken “on the side”………I don’t want to give myself the “out”.

It almost seems like that would be “too easy”….let me escape into some dumb show or waste more hours on my phone….which is what I did while waiting for Jeremy to finish counseling, which also happens to be when I locked myself out of the van. Would you like to hear that story? I sure hope you said yes…..

You see, we have two sets of keys for the van….my set which has the key fob attached and Jon’s set which only has a key. I ALWAYS hang my keys up on the key hook close to the front door….that way I ALWAYS know where they are. (The inference here – in case you didn’t catch it, is that keys get lost in our house, but not by me…) The only time I ever “lose my keys” , is when someone else uses them and doesn’t put them on the hook when they walk in the door.

So tonight when I went to take Jeremy to his counseling appointment…they were not on the hook, as it turns out, Geli had inadvertently taken them with her to my sister’s house when she left to go babysit. (She’s driven the van earlier in the day – totally helping me out, I might add.) Not the end of the world, cause I could just use Jon’s, right?

We drove to the appointment, got out of the van and I clicked the latch to auto-lock the doors. I paused briefly for a moment, feeling like something was weird or off; but shrugged it off and carried on. I dropped him off after connecting with his counselor and headed back out to the van….half way across the parking lot, I reached into my pocket for my key fob to unlock the doors and realized that I had Jon’s keys.

………………………….!!!!!!!!!

I panicked briefly, but quickly pulled it together and messaged Jon. While I waited for him to respond, I messaged Gelica. Fortunately, my sister’s house is not too far away from where the counselor is and Geli did in fact have my keys – which is what I had assumed – she dropped them off and YAY! I was no longer locked out, BUT….normally, I would drop a kid off and then go home for half an hour or so before coming back to do pick up…it would have been pointless to leave because I’d get home and then immediately have to turn around and come back.

So I sat in the van and wasted half an hour on my phone. So stupid…….

I’ve shared all of this lovely, ever so intriguing story because really, I’m not sure what to say about the fact that Josiah was officially diagnosed with Autism today.

Photo

It’s not unexpected. We took him to get assessed for Autism because we really did suspect that he was on the Spectrum. Having said that, its one thing to “think” and another to “know”.

Nothing about him changes. Its exactly the same as when Jeremy was diagnosed. Jeremy is Jeremy and always has been. Josiah is Josiah and always has been. Getting the diagnosis gives us common terminology to be able to discuss his particular challenges and strengths with the professionals in his life…like his teachers, for example. It affords us the ability to communicate effectively and to put plans into place to help him succeed. It also allows for funding to help him work through and learn the skills that “normal kids” pick up without being taught.

So, I’m not upset. I’m not devastated. But, it is tough to hear that your child has a neurological deficit that affects his socializing skills and abilities. He will be given lots of extra opportunity to practice and learn skills that may not come naturally, and I have no doubt that he will be a successful young boy, young man and eventually grown man. But it’s still tough to hear that he struggles, that he will struggle and that this is something legitimate. To hear that our concerns are valid…….it’s tough.

I’m still processing and I’m hoping to be able to process through it all a little more, maybe I’ll even have a moment to process some more tomorrow.

#microblogmondays 9

(null) This picture has nothing to do with anything except I love this little boy.

***********

I am EXHAUSTED but do you know what I did today…….nothing physical.

Literally, I sat all day. I took Josiah out to the psych evaluation and then sat and visited a friend. I picked him up for lunch and sat through lunch and then I dropped him off and sat and waited for the second part of the eval to finish. Then we walked for 10 mins, while we waited for Jon to arrive and then we sat and discussed the last 7 years of Siah’s life.

I was already so done even while I was waiting for the second half to be finished and I think that I figured it out……the stress is absolutely brutally wearing.

I already knew that.

And before you tell me “just don’t stress”…….it’s not a conscious thing. If I could just stop. I would.

Today felt like 6 hours of insanely intense stress……..and now we wait to hear the results of the assessment and the scoring of the tests.

Hopefully we will, soon, have more answers and a better understanding of how to help this sweet boy of ours succeed.

Moving Forward The Morning After

So I posted last night…..

I was tired and emotional and probably if those two factors had not ganged up on me….I may have filtered myself a bit more or even just made less typos…..maybe….maybe not?!?

I don’t know that this morning brought any new clarity with it.

I woke up with a killer headache……….at 5:30am.

Yah, it’s been a long day already and it’s only noon-ish. Did not get back to sleep after that. BLERGH!!!!

On a side note….It’s gorgeous outside.

That is the view to my right….

and this is my view straight ahead…..

She’s not supposed to be on the couch….but I haven’t exactly kicked her off.

It’s the last day of school before the Christmas Break….and probably my last quiet (ish) day for the next two weeks.

So, I’m taking advantage of it. I’m sitting. The house is a mess, and I made Judah pancakes for lunch. He is currently trolling Netflix….I believe Ninjago is the show of choice at this exact moment.

I’m currently staring at my Christmas Tree trying to figure out what I’m thinking, but again with the 50 million thoughts going in 50 million directions.

I had a few people send me private messages of encouragement and those were so nice to hear.

I wonder if it’s about perspective.

I’m in the middle of it all. From my position, I look around me and I see children who are unique and amazing and challenging in their own fantastic ways. I see the screaming and the bickering and the squabbling and the challenges to get them to do their chores and take care of their responsibilities. I see their shortcomings and I want to work with them to strengthen those areas while at the same time encouraging them in their strengths. I see these amazing individuals with really great hearts even in spite of all the challenges that we’ve faced individually and as a family……. But it’s a constant effort to keep these 5 bodies moving in a forward direction.

We were so isolated over the “cancer years” and before then….doing almost anything with Jeremy required HERCULEAN effort and sometimes it was easier to just not do anything. Again…..very isolating.

It is hard when you’ve had it said to your face that people can’t be friends with you because your child is too difficult. Or to hear from others that you shouldn’t subject your children to people because they are too much effort to have around and be around.

Just typing both of those down….I realize how brutal those two comments are. I mean, I know how brutal they are….I’ve lived though both of those said directly to my face and more. But I can’t imagine saying those things to someone…..EVER!!! I love children. I especially love the challenging kids. The ones that make you think and keep you on your toes. The extremely smart kids that say the most incredible things but require a little more attention and focus……I love the regular kind of kids too, but somehow, the ones that people seem annoyed with or bothered by….the ones that talk and talk and talk and talk and never shut up……I LOVE those kids. I want to go out of my way to make sure that they feel special and included and NEVER EVER a bother or an inconvenience….

I get it. I know how much effort it is. I live it…..EVERY. SINGLE. DAY! Jeremy has not been the easiest child. He requires some effort. Well, he requires a lot amount of effort. So does Josiah in a different way and Judah….well, he’s a 3 year old. What 3 year old doesn’t require some attention and effort. My boys require effort……I know this. I guess, it would just feel really good to feel like others “want” to be with my kids. Do you know what I mean? I think that in spite of their particular challenges or maybe even as a result of them….that my kids……all 5 of them are pretty amazing. I’d love to feel like others felt that too and wanted to spend time with them….not cause they HAD to, but because they WANTED to.

So, to those who have said something…..THANK YOU. Really! I appreciate it more than you may ever know.

I’m not sharing this in the hopes that people will “do” something. I am just trying to unravel some of this mess inside myself. Part of that is dealing with the hurts and wounds that I have or have gotten.

I realize that I’ve been hurt and I definitely have some sore, open wounds when it comes to my kids and how they are perceived and received.

And this OBVIOUSLY colors how I hear people comment on my kids.

So the school wanting to help Siah….turns into….HE’S A PROBLEM…..which I can’t even fathom….cause he’s freaking sweet kid who can read and write and wants to please…….and then I go…WHAT….WHAT do I even do with that….

How could be he a problem…..which, when it comes down to it….that is not even the issue at all.

He is a great kid….who has some quirks and may require “some individualized strategies” to help him succeed and how do we (parents & school) as a collective team help him to achieve success?

So we met, and talked through some things and I think I have a better perspective. I think we are more on the same page than I “felt”.

Which is great.

Not that the whole things doesn’t still stress me out….but the Principal….she’s an amazing lady, encouraged me to trust them and to just “plug my nose and JUMP!”

I believe this school and these people are amazing people…..I believe they truly care about Josiah. I really do believe that they want the best for him. That they want him to succeed. And so…..I jump.

I’m scared.
I’m nervous.
I’m sure I’ll need reassurance again.

But…..

I want to trust.
I want to believe.
I want to be in “community.”

and so….

I carry on…

one step after the other…..hopefully in a forward direction. 🙂