Right on Track

We've reached the end of the first week of middle school, and we're right on track. 

Quite literally, actually. 

We spent several months this summer working with our local school district regarding Teddy's use of a GPS tracker at school. We had to navigate privacy and security concerns (for other students) as well as district policies. We worked with his tracking device company's school liaison educators to ensure our district understands the capabilities of his tracker and why it's best for Teddy. 

It took until an IEP a week before school started, but we reached consensus on how to best support Teddy. We're really happy with the solution as we feel it's best for Teddy to ensure his safety. It's also, hopefully, an opportunity to work toward changing district policy to allow other families to use similar devices.

At any rate, it allows us to know exactly where Teddy is, ensure he makes it to school, to his after-school program and track him should he elope from school ... not that he's ever done that before ... oh wait ... that's a good story.

Gosh, I love these two goofs!

While he does have his older brother at school to advocate and look out for him, AJ has yet to see Teddy at school because their paths don't cross. But several of AJ's friends have said hi to Teddy in the halls, and he has gym with one of the neighbor girls, which he thinks is the coolest thing. (He doesn't care that she's a mature 8th grader, and he's only a 6th grader ... he'll still hang with her.)

IEP - Quarantine Version

We had Teddy's IEP this week. Wisconsin is still safer at home (and will be through most of today as was announced today), contrary to how some people choose to act. So his IEP was done via Zoom, which is how I spend a good portion of my days in meetings with my co-workers. Dave said the IEP was a success from the start because he didn't need to fit into a child-sized chair in a room full of people he barely knows. I felt better prepared than last year since I remembered (last week) to ask for a copy of his IEP at least a day in advance, so we could read it and take notes.

His IEP went much smoother than last year. The person facilitating his IEP knows Teddy rather well, so we avoided some of the struggles from his last IEP when there was a substitute facilitator who knew her stuff but not Teddy.

It is absolutely clear that his team enjoys Teddy for who he is and have all seen solid progress in this shortened school year. They all had positive things to say about him, ranging from his tenacity to his social skills to his sense of humor. It was fun to hear the first grade teacher say how she sees Teddy joking with his classmates, and she also complimented his ability to clean up his garbage from breakfast with only verbal prompting.

I appreciate so much his OT because her care for Teddy is obvious. She enjoys working with him, knows which battles to pick (between socialization with his friends or proper use of utensils at lunch, depending on the day) and recognizes so much of his strengths.

His teacher has done really well with him this year, and we've seen him able to identify some shapes, follow directions much better and increase with so many different little skills. In fact, he's really close to mastering another sign. We've been working at home with him for the sign for candy to use to ask for a treat, and tonight he did it perfectly with us modeling for him!

The best part of his IEP was when his gym teacher shared a picture from what was his last day at school for the year. They tried roller skating, and he said Teddy was persistent, willing to try and made it the length of a mat. I'm not sure where they found that many pads, but oh my goodness!

Anybody else feel like they need this many pads to attempt to roller skate?

And, it was a milestone IEP for me, since I made it through without crying once. I came close when the facilitator reminded us that Teddy is in this particular program, which doesn't mean he's at a particular school if the district moves his program. I made the point that although we understand that, it would be a shame for him to move away from all his traditional classmates where those friendships are established. For now, we'll just worry about whether the kids go to school in the fall, much less which particular school Teddy is at.

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.

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.

The Crying Mom

There are people who are cry publicly and people who don't. For most of my adult life, I've been in the group of people who don't cry. Working in Human Resources, I've had many tough conversations with people and pulled out the Kleenex box plenty of times for all those criers. There may have been a few times I barricaded myself in my office or had tears streaming down my face in my car as I drove out of the parking lot, but I was never the one to cry at work.

Quite simply, I took great pride in my ability to mask my emotions. Then along came Teddy. And that little bugger has ripped of that mask covering my emotions more times than I can count, including at his IEP this week. (An IEP is an annual meeting to review progress and determine goals and supports needed for the upcoming school year.)

We knew his IEP would determine where Teddy is placed for 4K next year. The options within our school district include traditional 4K classrooms, an integrated 4K classroom or an intentional 4K classroom. We also knew that a traditional 4K classroom is downright laughable for Teddy. The integrated class is co-taught by AJ and Teddy's teachers, with Teddy's teacher there to help modify the curriculum for those students who needed that support. The intentional 4K is the class for students who need such a high level of support, although they may integrate into a traditional class for brief periods as their abilities (and IEP goals) allow.

We knew Teddy's teacher would be able to make the best recommendation for Teddy to be successful because she's familiar with Teddy and how he does in a small setting as well as how the integrated classroom functions. We also knew that realistically the recommendation would be for the intentional 4K. I braced myself for this, having sobbed after hearing the options on the phone one day because I knew in my heart where Teddy would be placed. I psyched myself up on my run the morning of Teddy's IEP and felt comfortable with what his placement would be.

Yet, when the recommendation was made, I couldn't stop myself from crying. I thought I had almost managed to cover it up, wiping away a single tear nonchalantly, but then those tears kept coming. One of the therapists pulled my old move by quietly handing the box of Kleenex to me without judgement. I tried to joke saying, "I wasn't going to be that mom, but I guess I was anyways."

I could pretend that I was really disappointed because I wanted Teddy to remain at the same school with the same teacher (and AJ's teacher as well, who is great with him!) and most likely the same therapy team.

The reality is that, for me at least, it's really hard to hear that your child is so affected by his disability that he needs the most specialized instruction available. It's the same as when Teddy's teacher said it's so amazing to see Teddy walk and try to run across the gym chasing his peers. She said it's so cute that they wait for him to touch the wall before they run back across the gym, sharing it as a cute example of Teddy interacting with his peers. What I heard was that our son is so disabled that even all the other kids with disabilities accommodate our son.

And the fact is that none of this changes a damn thing about Teddy. He's the same adorable child who can disarm just about anyone with his megawatt smile and deep dimples. He's the one who amazes me when I realize the "mamama" that sounds like AJ said it came from Teddy's mouth. He's the one who still makes me do doubletakes when I see him walking with such relative ease and speed. He's an incredibly determined little boy who works so much harder than anyone else I personally know to do what he does with a remarkably cheerful attitude (unless we're short on sleep and refusing naps, which I'm not even going to touch today).

Seriously. That smile. Those dimples.

Nothing his teacher or support team said change any of this. And nothing they said was bad, mean or untrue about Teddy. It's just that hearing someone else point out reality, even in the kindest words, sometimes hits you hard ... because you live that reality and it's so familiar to you.

There is absolutely nothing bad about Teddy being in the intentional 4K. I know it's the best setting for him where he'll be able to make the most progress.

I guess I just need to find some superglue to keep him from ripping off my mask for my emotions time and time again.

A Letter to His Teachers

I firmly believe God's been doing his best to prepare me for the honor and challenges of being Teddy's mom well before Teddy was born. In the early months after I had AJ, I stumbled across a blog called Noah's Dad, which details a family's unexpected journey with Down Syndrome. I found so many of the posts insightful and thought how beneficial this information would be to another family in a similar situation. Although Teddy does not share the same diagnosis, there's enough parallels to give me hope, inspiration and a few ideas.

One thing Noah's parents did before Noah entered a traditional classroom was to send a letter to his teachers to help them better understand him. I thought this was an excellent idea. It's something more personal (and concise) than the lengthy IEP. So with school starting in a couple weeks, here's the letter Teddy's teachers will receive:



We wanted to introduce you to our son Teddy. We know you have his ISP, but there’s more to him than what’s documented there.

Teddy has a rare genetic disorder called Multiple Congenital Anomalies-Hypotonia Seizures Syndrome 1. We finally learned his diagnosis in November 2015 after nearly 2 years of searching for answer after his first seizures. At the time, we were told Teddy was the 15^th child known in the entire world with this disorder, which was only discovered by the medical field in 2011. Our joke became that Teddy wasn’t one in a million. He’s more like one in a half billion.

Essentially, Teddy’s genetic mutations affect his body’s ability to send messages and connect information because the pathways and processes don’t function typically. Part of his diagnosis includes hypotonia. This doesn’t mean he is weak, but it means his muscles are more relaxed and he has to work harder than you or I to support his own body. You will notice he is a bit floppy, for lack of a better word, and tends to choose positions that help him support himself. 

Teddy is curious about the world around him and likes to explore, although his methods are not always appropriate. Teddy enjoys the feel of items in his mouth, so we try to redirect him to something appropriate like chewelry if he has that need. Teddy likes to climb, so you may want to watch your bookcases, tables and anything else you may not realize he will believe is a mountain for him to scale. He’s at the point where he believes the word “no” means that he should laugh and continue whatever action prompted the word. 

One of the things that makes Teddy unique is he has an extremely high pain threshold. He may cry when his feelings are hurt or when he’s tired, but he rarely cries when he’s hurt (or he will cry for only a brief time where most other children would cry for much longer). This sometimes means we find bruises or scrapes without knowing exactly when they occurred because Teddy never cried to let us know something hurt. 

The most important thing about our son is that he is a child first just like any other child. He wants to play and learn. If you have any questions about Teddy or his genetic disorder, we hope you feel comfortable enough to ask us. We have created a blog about Teddy’s journey, which you can find at www.teddystriumphs.blogspot.com if you’re interested. 

We are very proud of our son and love him more than we could ever express. Thanks for the role you are playing in his life, and thank you for all you do to invest in our children. We appreciate you, and we’re so excited for the possibilities for Teddy as you work with him this year.