The Night Before The Big Day

Well, this is it. Tomorrow is the big day. Kindergarten. The day we have been working toward and preparing for for so long is finally here. 

I know in my last blog post I said that I was OK. That even though I was thinking about his first day, my anxiety wasn't consuming me. Well, as of a few days ago, it started to consume me. Insomnia (my old friend). Mini crying spells in the middle of the day. More crying at night. Constant stress and anxiety throughout the day with all the "what-ifs" going through my head. It's just so hard sometimes--the struggle between knowing that I have to give him a chance to do everything that any other kid would do, but at the same time wanting to protect him and keep him safe. 

When you have a child with special needs, sometimes you forget how "different" they are until you see them around a large group of "typical" children. Curtis hasn't been in school for a few months so I really kind of forgot how he stacked up to other kindergarten-aged kids. On Friday, his school had a pre-arranged kindergarten play date. They do this every year on the Friday before school starts, which is the day the kids get their teacher assignments. It's a chance for the kids and parents to hang out and say hello before the first day of school. Curtis was excited to go see a few friends of his, and the park where the play date is always held is right around the corner from our house. Within the first 2 minutes of being there, I was reminded of how different Curtis is from other 5 and 6 year olds. These kids were running around. Jumping. Racing up the play structure and speeding down the slide--lightning fast! Up on a grass hill they were playing "duck, duck, goose" and Curtis sat down to join while I stood back and watched. He sat there in amazement (as did I) while these boys and girls ran so fast around that little circle. And I felt so sad. Curtis will never run like that. Or jump like those other kids, or go up and down the play structure so fast. In fact, he was so overwhelmed by it all that after the first few minutes he just wanted to go home. And I didn't blame him. Because I did, too, a little. All those kids moving so fast worried me. I kept thinking that if one of them bumped into Curtis he was going to fall down and cry. And then I thought, "What if that happens when he's at school and I'm not there to comfort him after he falls?" Ugh. Anxiety. 

I just have to take a deep breath and keep my fingers crossed that he'll be OK. Hopefully he finds some other kids in his class that are a little more low-key and they can all play in the sandbox together!

So how does Curtis feel about school? He could not be more excited. When we went in last week for his little assessment at the school, he was disappointed to find out he wasn't staying there for the day. 

Tonight, we got his new backpack--a Christmas present from last year (thanks Aunt Laura and Uncle Loyd)--and stuck it on the hook next to his big brother and big sister's backpacks. Yes, he has a crazy spiky backpack--and he loves it!! 

Then he asked if we could get the lunchboxes out, so we did that, too. He's been wanting to get his lunchbox out and use it ever since it came in the mail about 3 weeks ago.

We also have his outfit all picked out and waiting. His big sister helped with that. I don't think Curtis really cares about that all too much--ha!

Also, to update on the post from last week for those of you who don't get the Facebook posts--Curtis' MRI came back the same as it was when he was a baby. Nothing new, which is good and what we all expected. His next neurology visit is in 4 months unless something happens before then (no thank you!) The neurologist wrote up Curtis' seizure action plan for school while we were there, too. Of course, while I believe the school staff is great, I really, really, really hope that plan never needs to go into effect. 

This sweet boy of mine...

He is snoozin' up a storm tonight and ready to take on kindergarten tomorrow. Even with all my fears, I am so, so excited for him. He's been looking forward to being a big kid and going to his brother and sister's school for so long. Now the day is here. 

Good luck, lover! We are cheering for you!!

xoxo

Summer, School, and other Stuff

It's August and summer is coming to a close. I know I say it every year, but it really seemed to go by so fast. In 11 days, Curtis starts kindergarten! My mind is blown! On Tuesday he goes in for his little kindergarten "assessment". My biggest concern? The fact that we have to be there at 8:00am! (We've been sleeping in until 7:30 or sometimes even 8:00am, which is late in this household). 

I had to start a whole new system for school paperwork for Curtis now that he's starting kindergarten. If you recall, I showed you my system for all of Curtis' "stuff", including his school IEP papers, in this post. That filing case is filled to the brim and about ready to burst. And even though there is a method to the madness, it really is a mess. In kindergarten, Curtis will still have an IEP (he already has on in place, actually). I also met and spoke with the school nurse over the summer to discuss his medical needs. We had spoken on the phone prior to the seizure, but after the seizure I found out that getting him to school would require a lot more paperwork. I filled out what I could and the rest went on to his neurologist and pediatrician. 

In any case, here are a few photos, because they always seem to shock people (including me) when I show them all spread out. 

Here they are in their folder 

And all spread out...

Yes, that is just the preschool years paperwork. 2 years. Crazy, right?

Here is what we have going for kindergarten so far... 

And this is the new set-up for kindergarten paperwork. It's more portable (so I can take it with me to IEP meetings, meetings with the school nurse, even to his doctor appts if I have forms that need to be filled out).

crappy iphone photo, apologies

I won't even bother with getting into my fears and anxieties over the start of kindergarten (maybe I'll save that for another post on another night). They are there, as they would be even if everything about him was "normal" health-wise. It's just how it is. I'm accepting these feelings and trying to not let them overcome me. Believe it or not, I'm actually sleeping well at night. Will that change as the first day draws nearer? Probably. But I think Curtis can succeed in school, as long as his health remains stable. And so far we seem OK with that...

After the seizure I kept a very close eye on Curtis (still do, obviously). He did have some strange activity, especially while sleeping. Lots of movement, strange things with his eyes and lots of head movements, leg movements. I was told to take videos and so I did. Tirelessly. 

This is a photo of my computer while I'm watching a video of Curtis sleeping. I'd set up a camera and record him napping, because that is when he'd jerk and move around the most. Then I'd watch the video.

I must have spent hours taking and looking at videos. Some will be shown to the neurologist and discussed with her. Maybe this was side effects from his meds? Or seizure activity? Most of it has settled down now (he's still sleeping in our bed)--all I really see from him now is leg jerks, like restless leg syndrome. During the day he has seemed fine and I haven't seen anything that resembles a seizure. I did see what appeared to be one or two absence seizures right after he came home from the hospital. But nothing since. 

Curtis had an MRI last week. This is something that was scheduled after he left the hospital in May and they ordered it just make sure that nothing new was present in his brain. I don't know the results yet, but I will be getting them tomorrow at his neurology appointment. We haven't seen his neurologist since his hospital stay after the seizure. I'm assuming that no news is good news, but I will give an update on that on the Facebook page tomorrow or over the weekend. Going in for that MRI was stressful, no doubt, but Curtis was a champ. 

Post-MRI popsicle

Those sleepy anesthesia eyes...

My boy is such a trouper. He was so scared to get on the bed to even start the process. He cried and cried (as did I). But when it was done, he was completely fine. No tears, no problems at all. God, I love him! 

Moving on to several totally different subjects and a lot of photos all at once :)

In case you don't follow on Facebook or Instagram...or even if you do...

This has been our summer...

Curtis graduated from preschool

And he turned SIX!

We renewed our Legoland passes and his love affair with Benny and the Spaceship! continues :)

We just got back from our annual summer family vacation in Montana, which is always amazing. Curtis once again let loose and did some things he doesn't usually do. You can read about our trip last year here. He loved the canoe and the paddleboard and did both on his own a bit. He swam in the lake in our "secret spot" all on his own, which he's never done before. He's really showing some independence (just another sign that he's ready for kindergarten)! 

Standing on a paddle board in some shallow water--great for testing balance

Lake McDonald, Glacier Park...playing with rocks and sticks

We have been having some issues with loud noises and at first Curtis didn't like riding in the boat because he thought it was too loud...

But he warmed up to it pretty fast...

And soon was going crazy with me and loved to go fast :)

Venturing out of the boat and into the lake to swim! So brave!!

Swimming with big bro and sis in the lake! They were so excited!

We have been going to the beach and swimming and doing some school shopping--soaking in the last few days of summer.