Thursday

[lfig]

Apr 18, 2019 10:34:56 GMT -6 peachsmama said:

Apr 18, 2019 10:33:18 GMT -6 cagoldi said:

Infusion day for me. Good thing, because I feel myself going downhill and have for the last week. Previously, I could only tell if somehow our date got pushed back a bit, but now I start to notice a pretty significant decline several days beforehand. All the more indication they’re working, though.

We got X’s report from the neurodevelopmental pedi last night and I’m feeling reassured. He instructed the school district to provide him with a 1:1 aide and said that they need to implement a mandatory “bully watch” where he will never be out of sight of educators so he is not subjected to any harassment at any time in any educational setting.

The thought of anyone being mean to that sweet boy makes me so sad.. I'm glad those measures are being taken.

Yes!  So glad that are taking those steps!  

I have found the kids at Sierra's school to be sooo kind and helpful.  They all want to help her and show her things and help her learn.  We will be out at the store in town and the kids (that I don't even know) from all age levels are running up to say hi to her.  Which I find so sweet.  Of course, I know things may change when they get older...but I am holding my breath that being in a small town will benefit her in this aspect because everyone knows her and they will have all grown up together so there is less room for the nastiness to happen.  

We did experience our first unkind encounter last week.  We went to the park in my hometown with my sister's kids.  S took off running for the swings but there were 4 teenage girls in them.  She is unsteady in her movements so her running doesn't look normal.  The girls started laughing hysterically at her and none of them offered to move so she could swing.  I just picked her up and said "Come on, those swings are being used, lets go find something else to do".  It took everything I had in me to not ream those girls out for not being more empathetic.  But I realized they are in a big town, where they are not as exposed to those with different abilities.  Although it should be known to be kind to others regardless, I decided that we were there to have fun and was not about to let those girls change that.

[cagoldi]

Aw, lfig. Poor sweet girl. I hope those kids develop some empathy soon. 😡

[lfig]

Also, I am an idiot. I have been super frustrated this week because I have called a few different doctors at the hospital with various questions/issues both last week and this week. But NONE of them had gotten back to me. I was getting pissed. This is very unusual. Then today MH forwarded me a message from one of the nurses. When I called her back I let her know to call me back, not MH as I am the one who handles all that stuff. She said she had left me messages a few times and never heard back. So I got to checking....I had somehow BLOCKED the hospital # 🤦🏼‍♀️

I had 5 voicemails from them since Monday. They are unblocked now. 😬

[jewels]

Apr 18, 2019 9:33:23 GMT -6 Sunny41 said:

Apr 18, 2019 9:28:19 GMT -6 jewels said:

Oh and MH told me last night that instead of coming home Saturday night for 5 days, he is only home till Monday morning. And that trip went from 3 days to 8 days.

So my kids will spend a total of 2 days with their dad from February 10 - April 29. I am deep in a pitty party for myself right now.

UGH!! That is a big change for all of you. Will he be home for good then after April 29?

no, he is home till I think 5/9?  but April - June is usually his busy season so he will be gone a bunch over the next 2 months, fortunately all shorter (I think nothing more than 10 days) trips.

[jewels]

lfig you are a bigger person then I am. I'm not sure I wouldn't have said something obnoxious to those girls. Teenagers should know better

[mwhip]

cagoldi I'm glad you have a plan in place starting now. It's sad that he has to have someone with him for bullies...what has our society become that kids just can't be themselves and learn at their speed without some other kid being an asshole about it. Hopefully this allows the other kids his age, as well as him, to not stand out because it will be his norm.

[mwhip]

Apr 18, 2019 11:33:12 GMT -6 jewels said:

lfig you are a bigger person then I am. I'm not sure I wouldn't have said something obnoxious to those girls. Teenagers should know better

I agree...I would have not been nice to them.  

[lfig]

Apr 18, 2019 11:44:02 GMT -6 mwhip said:

Apr 18, 2019 11:33:12 GMT -6 jewels said:

lfig you are a bigger person then I am. I'm not sure I wouldn't have said something obnoxious to those girls. Teenagers should know better

I agree...I would have not been nice to them.  

Their only saving grace is that S doesn’t understand they were laughing at her. If she would have understood what was happening I might not have walked away so gracefully. Lol.

[nam2013]

lfig stupid kids!!! You’d expect more from teenagers.

jewels oh god that is a lot, your more than allowed to throw yourself a pitty party, I wish I could help you out!

cagoldi glad they have a plan for X, and no one better bully that amazing little boy! Don’t they know there’s an army of N13 moms on his side?!

klong11 if ds is anything like his mom, loosing a tooth might be a few years away, but I’m stealing your idea of a felt pouch, it sounds cute & practical.

[klong11]

nam2013, super cute and it looks like a little tooth. It also seems to help with any anxiety towards losing it. When it gets super wiggly the pouch appears and so she's like, oh the tooth fairy says it's coming out soon, so then she's more inclined to just pull it out rather than letting it drag on and on for weeks.

[inthekitty]

Early confession: On the way back from WDW I started watching Instant Family on the plane. I was enjoying it and had about 35 minutes left of the movie when we landed. Since then I have looked for places to watch it free/rent it cheap. The cheapest I found was $4 and that was too steep for me. So I'm torn because I want to know if Marky Mark keeps his new Funky Bunch or returns them back to the store as damaged goods. I hope it's available on the flight to Denver so the mystery can finally be answered.

[tallb]

We had conferences this morning and both kids are doing great. N is much shyer than j ever was, so that's a big difference between them. I've been trying to work with them here and my dad came over for 3 hours and powerwashed the deck, brick, the free super old teak table, and slate patio. It's looking 👌.

I have classwork to do tonight but also need to get a Costco and target run in, but that may have to be tomorrow with the masses.

[peachsmama]

Apr 18, 2019 11:01:50 GMT -6 lfig said:

Apr 18, 2019 10:34:56 GMT -6 peachsmama said:

The thought of anyone being mean to that sweet boy makes me so sad.. I'm glad those measures are being taken.

Yes!  So glad that are taking those steps!  

I have found the kids at Sierra's school to be sooo kind and helpful.  They all want to help her and show her things and help her learn.  We will be out at the store in town and the kids (that I don't even know) from all age levels are running up to say hi to her.  Which I find so sweet.  Of course, I know things may change when they get older...but I am holding my breath that being in a small town will benefit her in this aspect because everyone knows her and they will have all grown up together so there is less room for the nastiness to happen.  

We did experience our first unkind encounter last week.  We went to the park in my hometown with my sister's kids.  S took off running for the swings but there were 4 teenage girls in them.  She is unsteady in her movements so her running doesn't look normal.  The girls started laughing hysterically at her and none of them offered to move so she could swing.  I just picked her up and said "Come on, those swings are being used, lets go find something else to do".  It took everything I had in me to not ream those girls out for not being more empathetic.  But I realized they are in a big town, where they are not as exposed to those with different abilities.  Although it should be known to be kind to others regardless, I decided that we were there to have fun and was not about to let those girls change that.

I want to smack their parents. I know it's not always the parents fault but I just can't stand mean kids and I can't smack them.

We were at soccer the other day and there was a baby boy with a helmet. Matthew said "look mommy that baby has a helmet" And I'm bracing for the awkward comment and he follows with "can we get my baby sister one?" The mom immediately smiled.

[tallb]

Glad they are being proactive cagoldi but I probably would have been surprised too by the aid.

Ohh lfig you have better self control that me.

I read this article last month and this convo reminded me of it. I thought it was incredibly well written about how to navigate kids and special needs. As usual it's from the same blog I always share, cup of jo: cupofjo.com/2019/03/special-needs-encounter/

[lahdeedah]

Apr 18, 2019 9:28:19 GMT -6 jewels said:

Oh and MH told me last night that instead of coming home Saturday night for 5 days, he is only home till Monday morning. And that trip went from 3 days to 8 days.

So my kids will spend a total of 2 days with their dad from February 10 - April 29. I am deep in a pitty party for myself right now.

I’m sorry. This sucks so much for everyone. Does he make his own schedule? Is there an “off season” for him at all?

[joelies]

It's been kind of shocking and sad to me that there are a few kids in Col's kindergarten class that are consistent troublemakers. Really it's one main kid and 2 who follow his lead. They're already showing bullying tendencies which I don't really get - they don't have older siblings or anything, so where did they learn this?

[klong11]

joelies, do they have younger siblings?

[guster]

cagoldi, I’m really glad they’re being proactive, but I hope that it’s a situation that X never has to endure. These might be too future – based questions, but will the one on one aide stay with him as long as he/ she is employed within the district or is it someone who will switch grade levels with him? Do you get to weigh in on the aide?

[guster]

Such sucky teenagers, lfig! I’m sorry!
jewels, that’s a very long time. I’m sorry the visit can’t be longer.

[joelies]

Apr 18, 2019 14:35:12 GMT -6 klong11 said:

joelies , do they have younger siblings?

The main kid is an only child. One of the followers has a little sister but no idea on the other boy. Maybe we were just lucky not have run into any of that at daycare? Who knows.

[joelies]

Apr 18, 2019 10:46:48 GMT -6 cagoldi said:

Oh, also, ONE WEEK UNTIL DENVER!!!

Also this!!! Woohoo!!

[klong11]

Apr 18, 2019 14:37:46 GMT -6 joelies said:

Apr 18, 2019 14:35:12 GMT -6 klong11 said:

joelies , do they have younger siblings?

The main kid is an only child. One of the followers has a little sister but no idea on the other boy. Maybe we were just lucky not have run into any of that at daycare? Who knows.

I was just asking because one of Cadence's best friends used to be so quiet and then she had a little sister, and more recently a new baby brother and she has become quite the bossy little miss. Even Cadence tries to follow her "orders". It isn't bullying behavior, that I've noticed, but it's def. a stark difference than she used to be when it was just her.

[lahdeedah]

Hi! I’ve been drowning at work and at home. MH is on his way here now, so it should get better on the home front.

Hope everyone had a good day.

[lfig]

Apr 18, 2019 14:38:33 GMT -6 joelies said:

Apr 18, 2019 10:46:48 GMT -6 cagoldi said:

Oh, also, ONE WEEK UNTIL DENVER!!!

Also this!!! Woohoo!!

Can you all assign someone to live blog the weekend please. That way we ALL feel like we are there. Lol.

[lfig]

Apr 18, 2019 14:36:29 GMT -6 guster said:

cagoldi, I’m really glad they’re being proactive, but I hope that it’s a situation that X never has to endure. These might be too future – based questions, but will the one on one aide stay with him as long as he/ she is employed within the district or is it someone who will switch grade levels with him? Do you get to weigh in on the aide?

Not cagoldi... but I didn’t get any input on Sierra’s aide. And I just asked her aide the other day if she will go to Kdg with her and she said she didn’t know yet. They haven’t told her their plans for her for next year yet. But from my experience (I used to be an aide for 2 kiddos with autism) typically the aide will move along with the kid.

[lfig]

Got word back from the dr after S’s long seizures the other day. We are increasing one of her daily meds. Then they are adding a new emergency med for seizures lasting longer than 5 minutes. It has to be administered rectally though so that ought to be fun for the school. But it’s a lot more effective in stopping them in the moment. Today she had a cluster of seizures and they had to give the emergency med for that (which is a pill). They thought the IVIG infusions might help with the seizures but it clearly hasn’t. But at least it is helping her hands.

[mwhip]

lfig I hope the change in meds helps S. Glad to hear her hands are getting better.

Our HR manager sent an email telling us to leave by 4, no problem from me. So I'm home already, laying on the sofa.

[guster]

Apr 18, 2019 14:58:58 GMT -6 lfig said:

Apr 18, 2019 14:38:33 GMT -6 joelies said:

Also this!!! Woohoo!!

Can you all assign someone to live blog the weekend please. That way we ALL feel like we are there. Lol.

Oh, yes! I cannot wait to hear all about it!

[guster]

Apr 18, 2019 15:03:33 GMT -6 lfig said:

Apr 18, 2019 14:36:29 GMT -6 guster said:

cagoldi, I’m really glad they’re being proactive, but I hope that it’s a situation that X never has to endure. These might be too future – based questions, but will the one on one aide stay with him as long as he/ she is employed within the district or is it someone who will switch grade levels with him? Do you get to weigh in on the aide?

Not cagoldi... but I didn’t get any input on Sierra’s aide. And I just asked her aide the other day if she will go to Kdg with her and she said she didn’t know yet. They haven’t told her their plans for her for next year yet. But from my experience (I used to be an aide for 2 kiddos with autism) typically the aide will move along with the kid.

That’s what I experienced with the one-to-one aides in my high school English classrooms but I didn’t know if things were different on the younger end if things.

[guster]

I hope the new meds help, lfig!