Sunday, April 29, 2018

A New Name, Updates, and a DITL

First off, with Tessie going to therapy, and things sort of settling into a normal schedule again, I am hoping to start writing out one long (not super long but like, normal long, as in not super short) written blog post a week again. I'm planning on picking a day of the week and making it a regular post at a regular time that I can do the night before and schedule.

I want to start this week, and it will be filled with much of what's in the vlogs, for people who like the written format better, but I'm not sure if it will be completely regularly weekly until the end of May, because of what I'm talking about in the first video down below (the one with the red background).

The reason is that between the two of us, Tessie and I, are heading to the hospital six times in May. I'm going under general anesthesia twice, and she's going under at least once.  And she's making at least two big trips to the children's hospital this month.

I will put those updates in my end of the week reports (for those who want to know sooner, they'll be in the vlogs first).

And that's the latest!

Oh and it finally appears to be spring here in Michigan!

I hope!

Friday, April 27, 2018

Tessie's Scariest Night

When I made this I had convinced myself that it had been four months since Tessie had had a bad night (for some reason I kept thinking it had been in January) but after I finished this I went back and checked, an upside of blogging and vlogging I guess, and saw that it was almost two months to the days since her last scary episode, which makes these almost like clockwork.

Our little Tess is totally and completely fine now, and had a great day at therapy yesterday and today. She's napping at my feet as I type this.

I just wish that we could get this figured out.  Okay, I really wish that everyone who said she would outgrow it was actually right... because that would have been awesome.

Here's the latest:

Thursday, April 26, 2018

Does My Child Have Autism? Do They Have a Delay? And What Should I Do Now?

As April comes to an end (one post after this) I wanted to put together a post with links to sites that can help parents who have questions like "is this normal?" along with answers to questions like "what do I do now?" if something isn't "normal."  This post aims at answering those questions, in one place.

Wednesday, April 25, 2018

She Did Say "Hi!"

Tessie may steal the show by first saying "yeah" and then saying "hi" in this one, but I also take you guys to Paul's office (which I'd only seen once before today) on our way to a doctor's appointment, on a shopping trip, to a going out of business sale at a dance wear store, and everywhere else our day took us!

Monday, April 23, 2018

Meet Maggie!

I'd made one of  these for the other four kids but making Maggie's took a little bit longer.

I had this picture in my head of what I wanted her post to look like and it didn't come together until this week, when it did.

Sunday, April 22, 2018

Gymnastics and Horses

This Saturday is our last Saturday with regularly scheduled gymnastics (although we have so many absences built up over the last year with all the illnesses that I think we have nearly an entire term of makeups, so this probably won't be our last Saturday class, just yet!) so I had to make a video about it.  But the best part was that it was finally dry and warm enough for the girls to be outside on the horses!

Saturday, April 21, 2018

Spring Cleaning (Starts)

We've now had three scattered days that sort of felt like spring and I'm getting into the season by doing some major spring cleaning.  I'm not nearly done, but this is the start!

Thursday, April 19, 2018

The Invisible Years.

It's Thursday and I didn't get around to posting yesterday so I have two posts today!

The second one is really just silliness with the kids.

The first is... a little more vulnerable.

But I have to say that I did have fun editing the photo.

Edited to add:   I realized after making this that I did probably speak to generally and that obviously this won't apply to everyone with a disability and their experience.  I do think it's a widespread problem though and that's what I was trying to express here, however imperfectly.

Monday, April 16, 2018

Autism and Being a Different Sort of Mom

It's Monday and it's still April (we've reached the halfway point) and that means I'm still talking about autism today.  In this video I talk about the mom that I imagined I would be and how that she doesn't have a lot in common with the mom I actually am.

Although I think this one isn't limited to moms with kids on the spectrum, although my own experience is definitely different from the norm as a result of my kids with different needs.

And I finished this late last night so I didn't get a chance to post it, but for anyone interested in the technical side of making videos I made this little video, and had lots of fun doing it!

Saturday, April 14, 2018

He Called Me a Hippo?!?!?

James, oh James.

He is such a hilarious little guy and his very loving nickname for me inspired the title for this Day in the Life post that we had so much making.

The part where Tessie eats and grilled cheese sandwich and ice cream and where she sees the play room after I moved a bunch of stuff around and changed toys around, were definitely the two highlights of my week!

Friday, April 13, 2018

An Unexpected Call from Her Neurologist

This has been kind of a rough week.

And yesterday was a rough day in a rough week.

Last night as I lay in bed I realized that I'd really been so relieved when we went to that neuro appointment and there had been nothing big... not more appointments, nothing added on.

I am really, really grateful that her doctor is thorough.  I am really grateful that he went over her chart  and called that children's hospital.  And I'm really grateful that he called me back and talked me through this.

But I'd be lying if I didn't admit that I'm also really down about it too.  Because the rebound from "no appointments for a year" to "sedation and having to intubated...." is kind of tough.

I knew going in that this was a possibility and that this was coming up.  And it will be good to know that her little brain is good and is okay and nothing has gotten worse.

It's just getting there that's hard because sedating her is always extra scary.

In other news I also threw in how I didn't get my biopsy earlier this week, but now have a D&C (no miscarriage and biopsy coming up either this week on next week under general anesthesia).  So.  Lots going on.  And lots of updates.

Although my favorite part at the end is totally where Sadie tells us about the "football player" pushing her UPSIDE DOWN on the swing.

Thursday, April 12, 2018

Autism and the Importance of Finding a Knowledgeable Primary Care Doctor

This one goes a little more into our personal experience (of course) as I talk about how important finding the right doctors' were for our two girls who are on the spectrum.

Wednesday, April 11, 2018

Monday, April 9, 2018

Autism, Activism, Advocacy, and Parenting a Neurodiverse Kid

It's Monday, it's April, and that means that I'm talking.  A lot.

This video has the story about what it took to get Maggie into school.  It wasn't easy.  It didn't just take one year.  And at first I was kind of angry

But now I'm past that.

I'm not sure the title for this one is totally accurate, but I was struggling with what on earth to call it and so I finally settled on this.

Sunday, April 8, 2018

A Fun Trip to Impression 5 Science Center

Maggie and Tessie ended up going to school on Friday together (and Maggie was so incredibly cute and concerned about everything Tessie was doing when they walked in together) and so I took the other kids over to the Science Center to keep them busy until the girls were ready to go home.

This is what happened next:

Saturday, April 7, 2018

Tessie Tries the No Rinse Shampoo Cap

I made this video because this (like the sensory clippers I talked about last week) is one of those things that I wish I had known about years earlier.  It has made possible what years of therapy and OT couldn't quite do.  Tessie demonstrated how they work (even though I don't use them with her normally) because I knew Maggie wouldn't love demonstrating them and she needed her hair washed anyways and she's about as big a fan of that as her big sister is, although for now that is still manageable without caps!

Friday, April 6, 2018

A Trip to the Zoo

It was below freezing, but we bundled up and headed to the zoo for a quick visit while Tessie was at therapy.  Maggie loved the Tamarin and I loved getting to hear her say "Tamarin!"

Thursday, April 5, 2018

Wednesday, April 4, 2018

Two Days

We started off this set off days not just a tiny bit late, but really, really, really late, but then things got better.  We went to Toys R' Us (the sales definitely weren't worth going yet... ours was still solidly at 10% off), got locks at Home Depot to attempt to thwart our lock conquerer, and had a birthday lunch.

And lots of other stuff happened too!

Tuesday, April 3, 2018

Dollar Tree Sunglasses

In the midst of more serious posts I wanted to do something a little bit more light hearted.

Also I apparently have been paying way too much the grocery store for sun glasses that were basically identical to the ones I found at Dollar Tree.

Who knew?

Not me, until, in desperation in the midst of the pink eye debacle, I ran in to get a pair (or five) and was pleasantly surprised (enough to do this post!).

So click play for some fun silliness.  But really I was surprised by how much I liked the glasses that I found there.  5 pairs for $5.

Monday, April 2, 2018

April, Autism, and Our Family

I usually schedule my videos to post at 2 pm eastern time, but today is April 2nd, and so in honor of Autism Acceptance I'm posting early.

This month I'm going to be talking about autism a bit more (twice a week) because it's a topic that's important to me and I have a lot to say.

Today I thought I'd start at the beginning.

Sunday, April 1, 2018

Easter 2018+ Cammie's 36th Birthday

Today was a busy day since it was both Easter and my birthday and I wanted to capture some of the memories in today's video.  We were very, very early to Mass, and because the cry room is very important for how we're able to make it through Mass right now I captured a quick look at what it looks like about a half hour before Mass started (I wanted to make it super clear my camera is away during Mass and way before it started too.  But often cry rooms get a bad rep, and this is one cry room that I am incredibly thankful for... and that's why I wanted to share it with you.).