A Not So Typical World

09/18/2023

Just got back yesterday from the More Than a Caregiver Respite Retreat at Moon Beach in St. Germain, Wisconsin. It gave a chance for 99+ woman to take a breath and reset surrounded by nature and others that understand our struggles like no one else in our life’s because they live that life too. I came home to my family refreshed and more open. Thank you to my husband for pushing me-to even have the courage to go and to friends that made it possible for me to even get there. Also a big thank you to Kate from Finding Cooper's Voice and Amanda from Jackson's Journey, Jackson's Voice for founding the The More Than Project that make retreats like this one possible.

09/01/2023

I haven’t posted since before the beginning of summer and now school is about to start on Tuesday…so I guess this is our family update 😊

I want to share about our experience this summer that changed my life and probably the life of our children. I have had a hard time processing what we went though but now that it’s over, here we go.

We spent the first part of the summer packing for our apartment renovation that turned out to be a lot more stressful and expensive than what was expected.

We had to live in an extended stay hotel closer to Minneapolis. It was actually, in what a came to realize later, in one of the most underserved areas in the area. I was expecting us to be in a place that not only let us have our cats with us, but a place that let us live like we were at home while our apartment was being upgraded. It wasn’t, but at least it let us have our cats.

I had to adjust my mindset because we were surrounded by people that were much worse off than us. We had no where else to go for 25 days. Others that were there had no where else to go…period.

We were first hand witnesses to things that most middle class people only hear about on the local evening news, and then get forgotten about the next morning. This was every single day we were there.

In between the chaos we meet some of the best people I’ve had the pleasure of meeting. They helped us with our kids and shared plenty of laughs and became like family. These are people that we might have never talked to in our life from before. These people are the reason why we didn’t lose our sanity while in transition.

Some people asked me why we didn’t leave when we realized we were in a dangerous part of town. My answer sadly was we didn’t have a choice unless we were willing to give up our cats. That wasn’t an option. Any family that we have locally wasn’t willing to help, and the family that was willing was too far away.

That experience was life changing, and even though by choice I would never do that again, I still feel like it was an experience worth having. The experience made me mentally tougher and it really made me appreciate the life I have.

Now that we are back into our normal routine and in our new place that looks absolutely amazing, I’m still having trouble adjusting back to myself and maybe that’s ok. I’m different but eventually I’ll be better.

05/23/2023

We had a great weekend and a wonderful Monday!

What all these days have in common was one thing, Water!

We all love being near the water and swimming so living across the street from a beach is great for the summer.

Water is incredibly therapeutic for Aaron so we were fortunate that he was pretty much born swimming.

We spent all of Saturday afternoon at the lake across the street from our home!

Aaron lasted almost 5 hours 😲

We got home and we were all burnt and tired but I couldn’t have asked for a better day!

Then the kids went swimming again on Sunday and then once more today after school.

I really hope this pattern continues this summer!

05/17/2023

The 5th grade adaptive 50 meter from Track and Field Day yesterday. Aaron is the kid in the middle with the navy blue shirt. His para was awesome preparing all the kids.

05/17/2023

Today I was able to attend Aaron’s track and field day. I was nervous that he would not want to participate.

But look at him in the front of a line with his classmates behind him, perfectly happy to be there. Getting ready to play a football rely race with 5th graders from all seven elementary schools in our school district.

He didn’t try to go home with me. He was able to finish the field trip, and ride the bus back to school.

I love seeing the amount of progress he’s made in the last year.

Before this school year he refused any group activities at school. This year I only had to keep him home for one field trip.

This is proof that if you keep working on skills progress will happen ❤️

05/15/2023

Today was Mothers Day and I wasn’t feeling it.

I woke up way too early because I was depressed. No matter what I did I I couldn’t shake my confused sadness.

Tried to put on a brave face for the kids but I had to hide and sob in the bathroom a few times this morning.

Aaron and I fought and Betty got upset.

They were feeling my sad energy I was trying to mask.

I know part of the depression I was facing was missing my mom.

She been gone for 9 years but Mother’s Day is still bitter sweet.

But there is more.

There’s always been more.

I recently had some mental health issues validated and now they are being treated.

I don’t feel comfortable talking about the specifics, but I know talking about this is important.

It’s amazing to learn more about myself over these last few months and it feels great to know that I can get help for these conditions.

I know I need to to more to keep the depressive issues at bay.

I need to stop isolating myself.

I need to ask for help outside my family.

This didn’t ruin Mothers Day by any means, but it definitely affected the way I’m going I treat myself moving forward.

03/31/2023

Why the heck is it easier to purchase an assault rifle than it is to get my sons controlled med transferred to another pharmacy when that med is out of stock?!?!?

I was told if there were any issues to go to the ER since my doctors office is closed on the weekends.

Um..hello?!? They won’t give him the med he needs at the emergency room!

And no we don’t go to a pharmacy that gives us what we need in emergency. 

So I guess he won’t be at school on Monday.

I was really hoping for a good end to Spring Break.

03/27/2023

It’s the first Monday for my kids spring break.

We aren’t going on any vacations or family trips when most of our friends are.

To say that I don’t feel envy that our family’s school breaks look different from most other families is a lie because I would love to take an elaborate trip right now but…

A trip would just be too overwhelming for our family when there wouldn’t be enough time to allow for decompression before the kids would go back to school.

Aaron needs that decompression so I try my best to meet him where he is at.

He’s having a hard time right now trying to catch his brain up to his growing body so a spring break at home is our best option.

But this post purpose is to show what a good day we’ve had despite having to take it easy for this break.

We live in Minnesota so it not very warm but the weather, even though not perfect, was nice enough to get outside and play.

Aaron is a homebody and prefers to stay inside, but my daughter asked to walk to the park across the street from us, and Aaron was very happy to join us.

We didn’t stay long but I set my iPhone timer for one hour. That gives me a reminder to push for him to be out a little bit longer than he prefers, and gives his sister more time to play.

Aaron didn’t ask to go home until the timer only had about 5 more minutes to go!! This is a big win for us since we’ve been in a harder season and I only had to tell him, “Just 5 more minutes!”

So then we walked home and grabbed some Dunkin’ on the way!

I don’t know how the rest of this break will go but I just wanted to show off this win 💜💜

02/09/2023

I wish people knew more about how hard it is to find something for our children with different abilities to do outside of therapy, school or our homes.

Today I’m hyper-focused on the limited or non
existent amount of organized activities that are available for my son with autism.

When there is an adaptive activity that’s available you have got to jump on it quickly because it’s going to fill up fast but sometimes I can’t afford it financially to sign up immediately.

Or I can afford it but it’s to far away.

Or sadly it becomes unavailable because special needs parents are sometimes too scared to sign up because it’s easier to keep our children home and not be a burden to other people.

Because we are reminded everyday how our children are difficult.

I get frustrated hearing friends of mine with typical children saying they are overwhelmed because of the amount of activities available for their children and then they don’t know what to pick.

I’m not frustrated with those people individually. I’m frustrated that I’ve got all the options in the world for my daughter to explore anything she wants, but barely any for my son.

So I definitely see both sides to this because my children are in two different worlds.

The typical world and…the not-so-typical world.

02/02/2023

My Aaron sleeps on his own now but those first few years that boy needed to constantly be with me.

He was constantly either following me, on my hip, or sleeping next to me.

01/25/2023

Haven’t blogged in a while.

I’m nervous about what people will think. I worried about being judged. I’m worried I’ll offend people I love and admire if I share our truth.

I had a situation today that helped that mindset change.

A few days ago I read a chapter of a book that really bothered me. Its a parenting book that I’m reading for one of the book clubs I’m part of.

The book is about fostering your child’s confidence, and the four chapters we read before were awesome!
Wonderful methods that work well for both my children even with different abilities.

The chapter that bothered me was about making friends. It’s already triggering being the fact that Aaron doesn’t have very many friends. He also hasn’t had a school friend give him a birthday invite since before kindergarten. Being the fact that he is already in 5th grade, that hits harder.

So my attitude going into this chapter on friendship was tentative at best. But I assumed best intentions and started reading. And I wasn’t impressed. The author called the behaviors that my son expresses “off putting” and that those type of behaviors will cause him to mostly be rejected by peers at school.

That hurt.

The chapter went on to give strategic ways to help cope with those behaviors and help your child rise in likability or… not be rejected.

I thought eventually this chapter has to bring up that there are some kids that might not be able to fully learn those skills like kids with, learning disabilities, mental health disorders, cognitive or intellectual delays, or neurological disorders like ASD.

Kids like Aaron.

But I didn’t.

So today we had our book club meeting and I was nervous.

I was nervous because I wasn’t sure how I was going to react discussing our reading.

I was surprised that almost everyone had a positive response to this chapter about friendship. But I shouldn’t be shocked since these parents have typical children. So thier lens is different.

So I did exactly what I do when I’m experiencing anxiety.

I stayed quiet. And acted like I was fine. Happy even.

But then I finally spoke out and told our group how I really felt about this chapter.

They listened.

They gave me space as a special needs mom to express this grievance I had.

Nothing bad happened.

No one judged me.

We connected on a level we didn’t expect to.

I was thinking hours later that if I didn’t speak up, and tell my truth, I’d be miserable with resentment for people that were nice enough to provide support for me today❤️

Love y’all!

Have a happy Tuesday evening!

12/25/2022

We’d love to wish everyone a very Merry Christmas!

12/05/2022

A successful and fun outing at our local Christmas Tree lighting!

Aaron use to hate these events so to go to this with minimal stress is a miracle to me 😃

12/04/2022

I love this explanation of the different type of helper dogs. Thank you Kayla from the page Adventures of Charlie & Sunny for sharing her wisdom 💙

Did you know?

Did you know there are different types of helper dogs? Three to be exact and they all serve a different purpose. Emotional Support Animal (ESA), Therapy Dog and Service Animal. Let me help you understand them, because it's important to know how to use the right terms.

Did you know that an Emotional Support Animal or ESA for short does not have public access rights? Yep, it's true. Although some people will argue about this, the fact is simple, they don't have the right to be in public and actually the laws back this up. Emotional support animals can be a variety of different animals that don't necessarily have any training and they help their people at home to be comforted and calm. An ESA is not protected under Americans with Disability Act (ADA) laws.

Did you know a Therapy Dog is a a dog trained to help many different people in multiple settings? This is where people get confused or confuse other people if they don't use the right terms when talking about helper dogs, because a therapy dog is not a service dog. They are different. A therapy dog typically is trained to provide comfort, bring happiness and calm to those they are around. Therapy dogs are the dogs you see visiting people in hospitals, schools or nursing homes. They usually live with their owner/handler and go out to visit others throughout the week.

Did you know a service animal is specifically trained to do certain tasks for one person to help that person with their disability? That's right, they are trained to do a specific task to help their person, tasks such as detecting low/high blood sugars, alerting to a seizure, deep pressure therapy, or even opening doors. Service animals have public access rights as long as they are trained, are not a nuisance, and don't pose a risk to those around them. There are only two types of animals that are recognized as service animals; dogs and miniature horses. There is also no certification for service animals. So, if someone tells you their dog is a certified service animal, they are very wrong and misinformed. Service animals are also protected under ADA laws

A service animal is not a therapy dog and a therapy dog is not a service dog. Likewise, an emotional support animal is not a service animal. This is where people get confused or confuse others. Please try to use the right terminology so we can stop spreading misinformation.

People who try to pass off their pet as a service animal make it harder and unsafe for those who actually have a service animal to live their life in the community.

My plea is simple:
Please do not pass your pet off as a service animal, it's dangerous and against the law. If you do have a service animal, please make sure they are properly trained before bringing them into public.

I am only one person trying to educate others. You can help me by sharing this with people you know. When we know better, we can do better.