Life Lessons and Next Year's IEP

I mentioned last week some frustrations with Teddy's recent IEP but didn't go into much detail. The past week has involved several e-mails and calls to follow-up on those concerns, some of which I initiated and some that I didn't.

Here's my takeaways, which are written as much for your interest as to help me remember a year from now what I need to do:

1. We talk a lot at work about assuming positive intentions. Odds are really good that no one is setting out to ruin your day or make your life harder. Obviously if someone is on Teddy's team, they care about children who require additional assistance. Granted, it's a lot harder to put this belief into practice in the moment when your focus is what's best for your child.
2. I need to be better prepared for Teddy's IEP next year. I need to request a draft copy in advance to the meeting, so we can review and make notes. There's so much to fit into a 1-hour meeting when you have a special education teacher, adapted physical education teacher, speech therapist, occupational therapist, physical therapist and nurse who all have sections to cover, much less parental concerns or observations. I know it's more work for the team to get that to us in advance, but it really helps us have a better meeting. Also, honestly, it helps me be better prepared emotionally, which leads me to the next point.
3. IEPs are hard on me emotionally. They are essentially a meeting that is focused not on your child's successes, of which there are many. The purpose is to really address those areas where your child needs additional supports to be successful. We all know there are many wonderful things about Teddy and what he does in school. Although we get snippets of these, that's not the point of the IEP. And if everything was wonderful, we wouldn't have an IEP in the first place.
4. I already put a sticky note on the calendar for September to get the names of everyone on Teddy's team. Each of the past three years, his team has been completely different each year with the exception of one consistent person from the school district between early childhood and 4K. It seems like the therapist teams aren't sorted out until the beginning of the school year, so I need to give them a couple weeks to get their ducks in a row. But then I need to insert myself in a positive way into their row of ducklings and open the lines of communication. Teddy might be brand new to them, but I've got years of experience with him.
5. When situations at school frustrate me, I need to reach out through the appropriate channels for resolution. I made one or two comments on my blog last week, but I also did reach out via Teddy's teacher to each of his therapists to thank them for their time and/or address concerns. That's the right approach. My plans to do an in-depth therapeutic (for me) breakdown blog post of the IEP wouldn't solve anything. I realized I wouldn't be writing that post as soon as Teddy's principal called me this week.
6. Teddy's principal cares about Teddy and wants to hear our feedback. Apparently this wasn't the first blog post that provided feedback to the school. I hadn't realized the reach of my words, not just who is reading this blog, but also the effect of certain posts.
7. It may not be pleasant to have those difficult conversations with people with whom you disagree, whether approach, word choice or perceptions. But the conversation I had with Teddy's speech therapist left me feeling much better, and reaffirmed my first lesson to assume positive intent. We never know what someone else has going on in their lives, so despite my belief that you set everything else aside and focus on the issue at present, people need a little grace. Of course, I can say this because I now am confident that Teddy's best interests are at heart. If I feel like someone isn't doing his or her job at the detriment of Teddy, well, that's another story. That's the mom in me, coupled with an HR background. 
8. I put a lot of pressure on myself for the outcomes of Teddy's IEPs. I feel additional pressure, in part, because Teddy cannot speak for himself. More preparation in advance will at least make me feel like I'm doing all that I can.

This post from Speech and Language Kids should be required reading for me before each IEP.

So in addition to the positive follow up, I have a chance at redemption for preparation and feeling like I'm doing my best for Teddy. As it turns out, he has his first reevaluation yet this school year. Although we've never been through one yet, I already started e-mailing information and questions last night to his team to prepare.

King of the Party

Teddy crashed a Mardi Gras party at my work today. OK, he was invited because my co-worker wanted me to come take pictures. She offered to help wrangle Teddy (my word choice, not hers) to make it easier for me to say yes. This party was intended for the clients who we support, so Teddy was the only young child there. That didn't stop him from making friends and having a fantastic time. He alternated between wearing the awesome hat my co-worker got for him that was "Teddy proof" and trying to make other people wear it. (The hat was remarkably Teddy proof. He only lost one bell the entire afternoon.)

Such a cool hat!

Teddy though the table of beads was intended for his personal shopping. He walked away with several necklaces, most of which ended up around my neck by the time we left.

He loved that there was music and a designated dance floor. He didn't know whether to dance or just stare in awe, though, when people were blowing the party horns. It's so incredible to see him with his version of dance moves. Trust me, mine aren't much more sophisticated. It's not just the happiness and joy that music and movement bring him, but it's the coordination and all those years of therapy that enable him to do something like this that he likes with other people. He can actively participate instead of hopping around the floor wishing he could do what others are doing.

All in all, it was a fantastic afternoon. I got my bucket filled from seeing the incredible effort our staff put into this party and the enjoyment of all those who attended. Teddy was welcomed with open arms and was such a good listener (although he preferred my co-worker to me because she let him explore more than I would have).

Teddy modeling in the photo booth.

Teddy finished the afternoon by pushing the button to open the doors for people who were leaving. That was a compromise to him pushing the button and running outside away from me, so that's a win-win.

I did make Teddy promise not to tell AJ how much fun the party was since I downplayed it because I only wanted one child maximum to allow me to be somewhat useful. I'm confident Teddy won't say a word, and he brought home tons of beads for AJ.

Rare Disease Day 2019

Well, if it was leap year this year, I'd be on time with my Rare Disease Day post because it's always the last day in February. But, it's not leap year, so I'm a day late.

Some years, I'm on top of things for Rare Disease Day or World CDG Awareness Day (May 16). Some years, I'm not. I did awesome last year for World CDG Awareness Day, so perhaps I'll aim for awesome again this year.

This year, aside from sharing a Facebook post from a past year, I did nothing to celebrate my rare and wonderful Teddy.

I did, however, get him dressed and ready for school. I helped him get on his bus and buckled him safely in and gave him a kiss before he headed to school. I left work early to go to his IEP for which I feel I prepared horribly. I managed to hold it together through the IEP with only a stray tear because I just couldn't stand how irritated and inconvenienced his speech therapist looked to be there, how she dismissed his third goal she's been supposed to be working on all year as not appropriate, so she didn't bother working on it or how she doesn't even know how to use his talker. I made nachos for the family for supper. I played magnets with Teddy after supper. We read stories as a family, and I told Teddy I was so proud of all he's learning.

There's always World CDG Day to be awesome again. Until then, we'll keep trucking along with rare, ordinary days.

Report Card

Last month, Teddy got his report card. Now, if you know Teddy, you know that although Teddy has many strengths, most of those are not items captured in the academic setting. (Heck, if you've read my blog before, you should know that.)

Report cards are different than when I was a child, at least for elementary school. The grading scale is:
4 - Advanced
3 - Proficient
2 - Basic
1 - Below Basic

I've learned from my experiences with AJ's teachers the past two years that 4's are simply not given at this age, so let's pretend the scale goes from 1-3 for purposes of this post.

First, let me say that I know from talking to Teddy's teacher that she strongly dislikes assigning grades because she recognizes that they don't capture the effort, skills and progress of the children she teaches. I completely agree.

Still, Teddy's report card made me laugh aloud. Most of his grades were understandable 1's because of the categories on which he's graded. He did get a 2 in science, though, for Earth and Space Science. How? Why? He also got a 2 in Health, which also befuddles me.

Now, something like gym, I feel his grades are more accurate. He got 2's across the board there, which is still really generous but balances his interest and efforts with his actual skill level.

Music was where I had to chuckle. He got a 3 for Engages Appropriately With Music, which I think is realistic. However, the poor kid didn't stand a chance for Singing. He got a 1. Seriously ... why would you grade a non-verbal child on a skill that requires verbalization?!?!

An accurate assessment of Teddy.

The one area that I felt fairly captured Teddy and scored things that make sense for Teddy was the life and career skills. He got mostly 2's, which is fair. He did get a 3 for Initiative and Self-Direction, and I don't think this is an exaggeration. Teddy has a lot of ideas, and he's persistent in following through on those ideas. Now, that 1 in Leadership and Responsibility goes hand-in-hand with that 3. A lot of Teddy's ideas are not responsible, but that doesn't stop him from pursuing them.

Now, if they scored him on adorable smile, he'd get a 3. Heck, maybe they'd even give him a 4 for those dimples.

Architecture and Parks

Oshkosh is rebuilding a park and has asked for public feedback, specifically asking school children to submit their ideas. AJ immediately embraced this, going so far as to reason that most kids probably won't submit anything, so his design will probably get picked.

The city is planning a park that all children can enjoy, and I love the inclusive nature of more parks nowadays. AJ and I talked about some of the things that would help families like ours, and ones with other challenges, enjoy the park.

I have no idea what kind of stairway that second item is ...

His suggestion of vending machines comes from his logic that it's a lot of work to get a child who cannot dress independently ready. By the time you get everything and everyone ready, you might forget to pack snacks. So he wanted food options available. (I swear my children have never been starved.)

I love how this kid thinks. When you combine his engineer brain with his considerate heart, it's quite the combination.

Being a Single Mom is Snow Fun

Dave is gone for a work trip this week (to Switzerland, the lucky bum). So while he's drinking Swiss Miss and eating Swiss cake rolls, I'm holding together the fort. And by holding together I mean recruiting 3/4 of the grandparents to navigate swim lessons last night for AJ with my aunt on backup to visit one evening later this week and pee all over the floor tonight and nearly every one in tears at some point in the past 3 days. 

It's not that bad, really, because the kids are in school and after-school care, which makes life so much easier than when you're with them 24/7. Still, it's hard to juggle things when you're one person, which means I have all the respect in the world for those who are truly single parents. 

The only day that I had the kids all to myself to occupy was Sunday when Dave left at 7 a.m. So I did the only logical thing, which was to pack them up with all their winter gear to spend 4.5 hours in the vehicle for the day. All that driving got us to and back home from my parents' farm where we spent several hours playing in the woods with rides in the Gator and behind the Gator in the Beast. The Beast is my dad's invention that has allowed Teddy to go tubing independently since he was 3.

Some of my fondest winter memories are tubing behind snowmobiles, 4-wheelers or anything that could pull a tube across snow. That's a bit tricky for a child like Teddy who doesn't have the strength, motor skills and comprehension to hold onto a tube or rope and keep his body safely where it needs to be. But the Beast is a masterpiece of a giant tire tube with a smaller tube inserted into it, both securely fastened on top of a piece of plastic that slides across the snow. This combination allows Teddy to be plopped in the middle and safely ride there without an adult on the tube with him. (OK, it's as safe for him as tubing is for any kid.)

 AJ and Teddy riding in the Beast.

So three years ago, when my dad created the Beast, we created our tradition of a winter cookout in the woods, complete with tubing rides. Both kids had so much fun they didn't miss Dave, which is a good thing. Teddy captured my mom repeatedly to make her sit in the Gator with him because he loves any sort of vehicle, and she was his chosen companion (much to my delight). AJ loved tubing the best. 

Teddy kept making my mom sit in the Gator with him.

Me, I love that my parents welcome us with open arms and put forth the effort to make these special memories for the boys. 

Little Moments

This week Teddy brought home the get to know you poster we created for his kindergarten class. I pointed to my picture and said, "Look, there's Mama!" Then I asked where Papa was, and Teddy pointed right at this picture:

The minute of hiking Teddy did this past vacation, captured forever.

I was so happy because we're still working on understanding and getting Teddy to show us he knows who different people are. 

From that little victory, he went to have snack at the table and then carried his  plate to the sink! It's incredible to see him carry a plate, often with food objects on it, and not have it be dumped immediately. It's also just this week that he's consistently putting his dishes in the sink when he's done, which is huge progress.

Granted, 10 minutes later he collapsed into a complete sobbing mess because he thought I took his popsicle away from him when all I did was set it on the table because that's where we eat popsicles. He melted into tears on the floor and wouldn't look up to the table or sit at his chair to see the treat. Instead, I had to set him in the chair, and then he was eye level sobbing at the popsicle and finally started licking it. It took some singing and silliness before he perked back up.

It just shows how there's so much progress and yet such simple things create massive breakdowns in either communication or comprehension. He wasn't mad that he had to sit at the table. He clearly thought his popsicle was gone. If we're being honest, I'd cry if that was the case, too.