Category: Josiah

Day 11 – Bay St. Louis, Mississippi

Coming to Bay St Louis is a home-coming for Jon. He spent his childhood here before coming to Canada when he was 13. He was back in the South for a couple of weeks when he was 15 but other than a one day stop a couple of years ago, he hasn’t been back. So this is a special visit.

We were fortunate to have a gorgeous day lined up for us, with clear sunny skies and temps around 24 degrees. We woke up at 6am to catch the sunrise and was it ever stunning.

It was amazing how fast it rose up out of the horizon once it started.

Our RV pad is right behind this little beach area. The sand is white; the water is warm and it’s SO shallow. It’s a small piece of heaven.

Our trailer is behind Jon and Jude!

After the sunrise, Jon and Jude walked out a little further on the beachfront; and Siah and I headed back to the trailer.

I was still in my pyjamas wrapped in a blanket.

As the sun and the temperatures continued to climb, we made coffee and had some breakfast. Jon connected with a family friend who had some fishing gear so He and the boys popped over to grab them and I had some quiet time to set the trailer straight and enjoy my coffee.

Isn’t this a gorgeous place to base ourselves from for the next few days? Look at that sunshine. Look at that view.

The boys came back with the fishing gear, donuts and a pound of shrimp as bait; and Jon took them down to the water.

They tried a few different spots with no luck. Oh actually, Jude caught a 2 in wide crab!

I went down and joined them as they came closer back to our RV pad and found a whole bunch of blackberries already ripe and ready to eat.

We relaxed in the sun for a bit. FYI – When you wake up at 6am there is a whole lot more day to fill up.

And then we headed to Long Beach to have lunch at Steve’s Marina with Ron and Phyllis. Sadly we got NO photos of our time with them because we were too busy being loved on and talking. Jon was able to get some Gumbo and Blackened Red Fish. I had a Fried Shrimp Po Boy, Siah had a Cheese burger and Jude had Chicken Strips and fries. It was delicious and the time spent together was SO incredible. The boys started to get antsy to leave and so we reluctantly said good bye.

I lied. I took a picture of a pelican from the restaurant patio. We ate outside & it was windy.

We drove back to Bay St. Louis and through some of Jon’s old neighborhood. His childhood home is still there and is so cute.

The boys headed back down to the beach. Jude to try fishing again and Siah to swim.

When did my baby grow up? He was such a tiny little button and now he’s morphing into a man.

At dinner time, we headed over to Word of Faith Christian Fellowship to see the church that Jon’s dad started 44 years ago. It was fun to see some more of Jon’s history and where he grew up. The current pastors were long time family friends and we went out for a good Southern meal with them. Again, we got almost no pictures except I did grab a photo of Jon’s HUGE shrimp Po Boy.

It was so lovely to connect with Tyrone and Carol and have dinner and hear from their hearts. I can see why Jon loves these people so dearly. They are amazing, amazing people with incredible hearts. After dinner, we stopped by their house to get some crawfish to take with us. Jon was so excited about that and I was so surprised that both boys tried one. Siah said it was okay and I managed to get Jude’s reaction on video.

They gave us a dozen eggs straight out of the coop, showed us their property; and the best part of the night was that they had 3 big dogs who the boys loved on for about half an hour. Big highlight for them.

We headed back to the trailer exhausted but happy. It was a huge day that filled our hearts and our tummies. Jude had been awake since 2am and we barely got his bed made before he fell asleep still in his clothes.

Tomorrow we head into New Orleans and to Cafe Du Monde. It’s SO exciting!

Day 9 – Arkansas

It’s our last day in Arkansas before we move on with our trip and I’m determined to hold every moment with so much gratitude.

Dalton had the day off today which was awesome. He, Xani and Jon hopped in Xani’s Mini Cooper and ran out to pick up eggs, bacon and sausage for breakfast. I’m sure we could have planned better but it was just another moment to be together and remember.

Jon and Dalton were in charge of breakfast and they did a fabulous job. It was delicious! Complete with grits and Jimmy Dean sausage. To be honest, I did not eat the grits; but I heard someone say they were delicious.

After breakfast, we tidied up and the boys headed to the range. Xani and I stayed behind. I was tempted to go but the lure of some quiet time was too much for this introvert.

The boys had fun and I took a shower, did a little prep for tomorrows travel and Xani made snickerdoodles. I helped her roll the dough balls and then we sat in the sun for a bit. It was a such a lovely day just being with the people I love.

We had talked about possibly having seafood for dinner but by the time dinner rolled around we decided to go to Waffle House. The boys were so excited because it’s internet famous for always being open no matter what.

Having never been, I was expecting more of a family restaurant but it was more like a diner. We squished 6 of us into 4 person booth with 2, on chairs at the end.

Before we arrived, I had figured that I didn’t want waffles so I’d probably just get a salad or something light. But the menu has waffles and eggs and hashbrowns and grilled cheese and basically it’s carbs with a few proteins like eggs, bacon and sausage to balance it out.

Jude said the waffle were spectacular. 10 out of 10 and it got an “S” rating – which I understand to mean Superior – for both the food and the service.

It was late when we arrived and by 8:30 the waitress suggested we not stick around as they would be closing at 9pm. We said that we understood they were open 24 hours so why were they closing; and she said that the drive through would be open but they closed the indoor dining as this was the ghetto and we’d be likely to get mugged if we stuck around. It was a funny way to round out the day.

We went back home and Siah checked in on his school work, we packed a few things up and went to bed a bit earlier as we were planning to get on the road to Bay St Louis early.

It’s bittersweet to be leaving my sweet girl but knowing how well she is loved by this incredible family makes it easier.

We absolutely enjoyed every moment getting to know these guys. They are such good people with great hearts; authentic and real and we hope to be able to see them again soon. We are so thankful that you opened your home and hearts to us. We feel blessed to call you family.

Day 9 – Arkansas

It’s our last day in Arkansas before we move on with our trip and I’m determined to hold every moment with so much gratitude.

Dalton had the day off today which was awesome. He, Xani and Jon hopped in Xani’s Mini Cooper and ran out to pick up eggs, bacon and sausage for breakfast. I’m sure we could have planned better but it was just another moment to be together and remember.

Jon and Dalton were in charge of breakfast and they did a fabulous job. It was delicious! Complete with grits and Jimmy Dean sausage. To be honest, I did not eat the grits; but I heard someone say they were delicious.

After breakfast, we tidied up and the boys headed to the range. Xani and I stayed behind. I was tempted to go but the lure of some quiet time was too much for this introvert.

The boys had fun and I took a shower, did a little prep for tomorrows travel and Xani made snickerdoodles. I helped her roll the dough balls and then we sat in the sun for a bit. It was a such a lovely day just being with the people I love.

We had talked about possibly having seafood for dinner but by the time dinner rolled around we decided to go to Waffle House. The boys were so excited because it’s internet famous for always being open no matter what.

Having never been, I was expecting more of a family restaurant but it was more like a diner. We squished 6 of us into 4 person booth with 2, on chairs at the end.

Before we arrived, I had figured that I didn’t want waffles so I’d probably just get a salad or something light. But the menu has waffles and eggs and hashbrowns and grilled cheese and basically it’s carbs with a few proteins like eggs, bacon and sausage to balance it out.

Jude said the waffle were spectacular. 10 out of 10 and it got an “S” rating – which I understand to mean Superior – for both the food and the service.

It was late when we arrived and by 8:30 the waitress suggested we not stick around as they would be closing at 9pm. We said that we understood they were open 24 hours so why were they closing; and she said that the drive through would be open but they closed the indoor dining as this was the ghetto and we’d be likely to get mugged if we stuck around. It was a funny way to round out the day.

We went back home and Siah checked in on his school work, we packed a few things up and went to bed a bit earlier as we were planning to get on the road to Bay St Louis early.

It’s bittersweet to be leaving my sweet girl but knowing how well she is loved by this incredible family makes it easier.

We absolutely enjoyed every moment getting to know these guys. They are such good people with great hearts; authentic and real and we hope to be able to see them again soon. We are so thankful that you opened your home and hearts to us. We feel blessed to call you family.

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.

Facing It Head On

I’m having a hard time settling down tonight.

We had an appointment today regarding one of our kids. This is not our first time having an appointment like this but I don’t think they get any easier.

As parents, we want to see the best in our kids. We talk to other parents about their achievements. A typical parent may brag about their child being on the honour roll or a sports club their child was invited to be a part of. They may share about the recognition their child received in Cadets or Guides.

Special needs parents want to share about the wonders of our children, too. But our pride may be in the fact that our child spoke at 8 years old, or learned to tie their shoe laces at 14, or shared a beloved and sacred item with a sibling. We are ecstatic (and often terrified) when they get invited to a birthday party or for a play date .

Would you even consider bragging that your child got invited to a birthday party or for a play date? It’s ok if that would never cross your mind, it just means that we function in different circles, on this great earth of ours.

Here’s something else that’s different…..

Parents of typical kids will probably never experience this situation, and if that is you, count yourself blessed. It’s a special kind of hell to go to an appointment and speak and share about all the ways your child is missing the mark. To spend a couple of hours talking “down” about your child. To fill in form, after form, after form, about all the things your child can’t do, and specifically doesn’t do, well.

You almost have to disassociate from yourself to do this. But you MUST do this, in order to get your child the supports they need.

So you do it, regardless of the fact that it goes against every parental instinct to cherish and protect. You dig out all the dirt and ugliness; and you lay it out there for all to see.

It’s hard because it’s not like you don’t know that there are things your child struggles with, but when you put it all together in one pile, at one time…..it’s overwhelming; and frankly, soul crushing.

That pile of crap in that picture up above……it’s all the stuff I swept out from under my couch. Some of it is garbage. Some of it is useful. Some is necessary. Some was misplaced.

It’s easier to know it’s there; but to only focus on what’s in front of you. If the room looks okay, then it’s good, right?

Its when you sweep it all out into the open that you are faced with a challenge. You can start sorting and do the work and effort that’s required to place things in order. You can throw it all out. Or You can sweep it back under.

You can’t throw “this situation” out or throw “this” away; and ignoring it doesn’t work out well for anyone. There really is only one appropriate option and that’s to put in the time and effort and to “sort things out”. As a parent of special needs children, those are two things that I have the smallest reserves of……time and energy!

But I will get up tomorrow and try to figure out what the next steps are because that is what you do when you love someone with all your heart and soul. When your goal is to help them succeed and be the very best “them” that they can be; you do whatever you can do.

If you have children with disabilities, you’re either nodding in agreement or horrified at what you may soon be asked to do.

If you don’t have children with disabilities, know that your friends, acquaintances, those parents……..they go through things that are tough. They do things that no parent ever wants to do; and they do it so they can afford their child the best in life. But those parents, they are tired. They are often overwhelmed. They may feel like they’ve betrayed the wonder and beauty of their child, in the name of “support”. The hardest part is that that there are no guarantees. You may not get the supports that are needed and then it feels like it was all for nothing; and that’s REALLY tough.

Parents of typical kids, I’m sharing so you can know…….so you can be aware…..so you can show compassion.

Not pity. Not ever pity.

But awareness, seeking to understand, and compassion are huge gifts that you can give us parents of kids with differences.

Take Aways…….

  • Be aware
  • Seek to understand
  • Have compassion
  • Be kind – Always Be kind!

Beginnings & Ice Cream

Well, here we are, day 1 of this Gratitude Challenge.

I’d love it if you would either leave a comment, here or on Facebook, Twitter or Instagram…..however you found yourself here. Or even just leave a post on your own profiles, using the hashtag #marchtogratitude.

It’s going to be fun to see the posts on social media when you search, using the hashtag.

I’ll be honest, I’ve been a pretty negative person. For me, living a life of gratitude has been born out of my misery and complaining; and then my desire to not be a negative person. Usually, I will start complaining or moaning about something; and once I catch myself….then I look for something good in the situation.

For example, I hate mornings. That’s already been established. So when I came downstairs to start the morning “cat herding” this is what greeted me.

Cool Whip Container of Ice Cream

I could have got upset at my boys (that seems like a typical reaction to this scenario) but I’m constantly looking to “flip the script”.

My first thought was, “Ice Cream for breakfast, huh?!?”

My second thought was, “Take a picture of that, and send it to your sisters.”

Third thought was, “Well, Breakfast is taken care of.”

No upset, no anger, no disappointment. The bucket of ice cream is going to be gone sooner than I intended, but I wasn’t planning on having any so it really doesn’t affect me and when it’s gone…..it’s gone!

They got calories, dairy, and then they took all that sugar crazy to school. So, I’m good!

To wrap it up…….I’m grateful that my kids are independent enough to get their own breakfasts. I may need to talk a little more about appropriate food choices, but in the end, they ate with no complaining and I didn’t have to do anything. I got to drink my coffee that I was also SO VERY GRATEFUL FOR!

I’m calling it a win and moving forward with the day.

I’d love to hear what you’re thankful for today? Coffee? Sunshine? Family? A Job? What?

Advocating Hell

Advocating for your child is it’s very own unique level of Hell. The mind games alone are enough to make you walk away and not even try.

I’m trying desperately to help you understand my child and to see that he’s not deliberately trying to be difficult and defiant. While at the exact same time, I want to not lose your support, regardless of the fact that I may be challenging you to step outside of your preconceived understanding. I am desperate to not come across as a helicopter mom, trying to make my child’s life easy. I’m hoping that you “hear and see” me as an expert on my child with valid input and not as an overprotective, un-objective parent. I want recognition that I come as a well versed peer and not to be on the receiving end of some bias towards me or my child.

I view children as wanting to please, as wanting to do their best…and when their behaviour deviates from what we’ve come to expect…..I question, “What is their Behaviour Communicating to us? What are they struggling to verbalize. What are they struggling with?”

Siahs struggling at school. His behaviour is one of escaping into a safe world…..classically autistic. Rather than clamping down on the behaviour, I believe that we need to figure out what he’s struggling with. Once we can help him……he will have energy to once again rise to the level of success, we have previously seen and even surpass it.

Until this situation gets sorted out, I worry tha we are stuck in discomfort.

  • make (someone) feel uneasy, anxious, or embarrassed.

I dislike discomfort but I dislike my child struggling even more.

It’s hell.

We, special needs parents do not enjoy ruffling feathers. We do not enjoy pushing the bubble. We do not enjoy messing up the status quo.

We would give just about anything to just be typical and never need to spreak with you. But we don’t have that option and so we carry on. Please don’t judge us for that.!

Hear us! Really hear what we have to say!