Guest Blog Post by AJ

 AJ wanted to do a guest blog post, sharing how Teddy hurt his ear from AJ's perspective:

We were setting up the Yi camera, and I checked on Teddy. He was clanking on a piece of wood, and 5 minutes later *CRASH* I was worried on what he did now, and the squatty potty was tipped over. The wood was on the window cell, and it was in his ear. He fighted his way out, and he cut his ear. It was bleeding, and we cleaned him up and saw cartilage, which gave me the creeps and got me nervous.

That sent us to the hospital, and he played on the family tablet on the way there. We got there. They set up my room, and he got a spring light toy, then got numbing medicine (which did not help much). Then they gave him the drowsy medicine, and he needed a headlock, and he hated when the curved needle went in. I built a Minecraft jail and palace and a get away home. He had to get 4 stitches, and then on the way back to the land, we cleaned up and went home and then finished the rest of the day. Then dad slept with him for bed.

First Day of School

 After countless phone calls and e-mails (and discovering that the director of special education for our district knows Teddy by name and personality) and an IEP meeting two days before school started, we had our plan in place for Teddy's education this year. We're still working on approvals for outpatient therapy (particularly getting OT extended and speech approved for the school year), but thankfully PT is set for the rest of the calendar year. Teddy has settled back into his music therapy sessions without missing a beat. (Pun intended.) Our childcare provider is working with him on academic activities daily at home, which he's excited to do because it's new materials to explore. It's super fun to watch him concentrate on an activity because his tongue either juts out of his mouth or into his bottom lip, so it's easy to tell when he's truly focused. 

This week was the first week Teddy went to school for his academic time. If you recall, we had advocated for homebound education for Teddy due to all the risk factors, but that was oddly enough deemed too risky by the school district. So, we're doing homebound at school, which means that twice a week Teddy goes for 1:1 instruction in a designated room. We had coordinated with his team where that room is located, how it would be sanitized and that PPE would be worn by his teacher. 

We felt comfortable with all the pre-work done as his school designated a room immediately inside the building, so Teddy doesn't have access to take off to explore the rest of his school. His team even took the time to explain, without us asking, the two different levels of cleaning products they will use to sanitize the room prior to Teddy's time learning there. Still, I was a bit surprised when his teacher commented on the first day of school about his PPE and pleasantly surprised when he sent a photo at the end of the day.

Guys, Teddy's teacher wore full personal protective equipment (PPE) to teach Teddy. He wore the same level of PPE that is used for interacting with known COVID positive cases in medical settings (aside from a cloth vs. surgical mask). He wore a mask, face shield, gown and gloves. While this might seem like overkill (and candidly was more than we were expecting), this all but ensures that even if Teddy's teacher has COVID that Teddy would not be exposed to it. And you might not be able to tell from the picture, but I can tell you that his teacher did this with a smile to support Teddy with his learning. 

Teddy was a bit intrigued by the PPE but still had a great session.

Right now it feels like our world is returning to normal with little regard for those who are most vulnerable to COVID. We often feel like we're in the minority in doing the right things like wearing a mask, physically distancing and keeping a small social footprint, but we don't feel like we have a choice to keep Teddy safe. That gets disheartening, but the effort made by his school and team to safely educate Teddy truly gives me hope and warms my heart. He matters to them. His education. His safety. They're working with us to make it safe for Teddy to be in this world, and we are so grateful for their support. 

Often I hear of how people are tired of the PPE they have to wear to do their jobs. I'm sure that no teacher expected to wear a mask to school, much less full PPE like this. Life is different right now. It won't always be different, but we'll always be different because of it. We'll forever remember the helpers and those who eased the stress of these challenging times. (And we'll probably at least know how to properly wash our hands.) 

Back to Sch ... Home

School looks different for every child this year. That's a given, whether your child has significant disabilities or an IEP. Schools have put considerable effort into planning how to safely return to educating students, whether in person, virtually or some combination. That's quite the challenge in and of itself, without taking into consideration the individual needs of students like Teddy.

We've been in discussions with the school district for 1.5 months with more questions than answers on what school might look like for Teddy this year. We all mutually agree that:

1. Teddy will not physically distance. It will require hands-on physical redirection, frequently, to make any effort at distancing.
2. Teddy will not wear a facemask. We are practicing with him to get him to tolerate one for short periods of time, with the goal of being able to wear one appropriately into and out of appointments. The mask still ends up in his mouth, which negates the entire purpose. 
3. Teddy will not be able to integrate with his 2nd grade peers this school year, which is a critical part of his education.
4. Teddy's seizure disorder means that COVID presents a high risk to Teddy. We've taken ambulance rides because of strep throat and spent time in the ICU with Teddy on a ventilator for a perfect storm of other ordinary illnesses. We don't want to see what COVID does to Teddy.
5. Teddy is not a candidate for virtual learning due to his attention span, desire to manipulate technology and overall comprehension.

I didn't expect the school to have all the answers, so we began piecing together the best plan we could for the school year. Although the school district is willing to accommodate Teddy's inability to wear a mask and distance, that means they will also accommodate those needs for the other students in Teddy's classroom. That means he'd be entirely unprotected, which is problematic given #4. We are still working on piecing that plan together, even though school begins tomorrow. 

One of the easiest starting points is to address therapy, as Teddy gets OT, PT and speech through the school district as part of his IEP. Rather than wait for the school district to propose how those services could be done, knowing that virtual was likely the option we'd hear, we are pursuing outpatient therapy services. Teddy has attended through Children's Hospital all summer safely, and we're comfortable with the precautions and measures taken there. The challenge is in obtaining approvals through both his primary and state insurance as typically insurance won't cover outpatient therapy during the school year due to duplicity in services. Right now, OT is authorized through late September, PT is authorized until the end of the calendar year, and speech is pending. The unfortunate part is that authorizations only go for so many sessions and/or through a certain date and then need to be reapproved. That means there's often gaps in services, which doesn't happen in the school setting.

Anticipating that Teddy wouldn't be in the school building, we also reached out to his music therapy location. We had put services on hold through the pandemic thus far, but we went through their safety protocols and Teddy's needs. We feel comfortable with the measures in place and the risk there, so we are resuming music therapy this week as part of Teddy's curriculum. He adores music (and has the best dance moves) and really benefits from the sessions as they address fine motor, gross motor and speech all using music. 

With all the outpatient therapy sessions, the only remaining pieces were actual academics and the minor detail of childcare. For academics, we advocated for homebound school, which I never had contemplated prior to this year. Essentially, homebound education is for children who are too medically fragile to be in the classroom where a teacher comes a couple times a week to the home to provide instruction. This required obtaining a letter of medical necessity from Teddy's doctor. 

The response from the school district is that homebound education is deemed too high risk during the pandemic, so it's not an option. They could do his homebound instruction virtually, which again isn't an option due to #5 above. I know it's out of the control of everyone whom I spoke to, and I understand the reasons it's deemed too risky for the school staff. But it's completely asinine in my opiion that it's too risky for 1 person to come to our home wearing PPE but it's OK for me to send a non-masked, non-distancing Teddy to school with 400 of his closest friends. 

So after an IEP meeting last week Friday, the plan is for Teddy to begin his academic instruction next week. He will attend school for 30 minutes twice a week for 1:1 instruction with a special education teacher. His team did a fantastic job in finding a space that is right inside the entrance of the school, so Teddy will literally walk into the building and right into the room, which will be sanitized prior to his visits. His teacher will wear PPE to protect himself and Teddy. His teacher will also provide us with worksheets, activities, art projects and the like to work on at home when he's not in therapy. 

We're going to focus again on a visual schedule for Teddy, which we attempted earlier this summer until he dismantled it as a toy rather than tool. We will attempt each day to focus at least on one activity for reading, writing his name, matching activities, turn-taking games, colors, numbers and a handful of other things within our play. We've put together a school cart for Teddy that can conveniently be rolled into the bathroom and locked there when he attempts to dismantle and do everything at once. (Our bathroom is the only sacred place on our first floor where we can lock the door to keep Teddy out. We need a larger bathroom.) I'm hopeful that with time and repetition that we'll be able to settle into some routines to work on these skills throughout the days. The fact that we are rotating two childcare providers with us filling in a few gaps will make it tougher from a consistency standpoint but will help with our patience hopefully. (And when our one childcare provider finds full-time employment elsewhere, I will cry. I'll be happy for her, but I'll cry.)

It looks so nice ... until Teddy touches it.

Do I wish Teddy got more than 1 hour of actual instruction a week from the school district? Absolutely, I feel like he deserves more. But I also recognize that if we felt it was safe for him to attend school that he'd likely be attending 5 days a week, possibly even when the rest of the school moves to virtual due to risk. The district understands that children with as significant of needs as Teddy has desperately need that structure and support of daily routines and reinforced learning to not regress, much less learn.

I feel that puts tremendous pressure on us and our amazing, phenomenal childcare providers more than ever to do our best to be occupational therapists, physical therapists, speech therapists, music teachers, art teachers, adaptive gym teachers, special education teachers, chauffeurs and playmates ... while ensuring AJ gets the academic and emotional support he needs. We will make it work, and we'll strive to have grace with each other and ourselves. At least this year should make any future back-to-school season a piece of cake.  

If You Give Teddy A Mask ...

 ... there's a chance he'll wear it. There's even a chance he'll wear it properly. That chance is slim to none.

There's also a chance he'll lick it. There's even a chance he'll chew on it. That chance is the one you'd bet on if you were in Vegas.

We are practicing mask wearing with Teddy because it would be extremely helpful if he could wear a mask, even for short time periods, like waiting for his therapy appointments or potentially school visits for brief academic sessions. (School is still an unknown for us, which is why I have yet to post. I don't have much nice to say about the fact that school starts in less than week, and sometimes I try to remember my mom's advice to not say anything if I don't have something nice to say.)

Teddy understands the concept and shows some willingness and even interest. But the time periods he'll wear a mask are extremely short and require redirection to keep it in place even for those short periods. The latest practice attempt at home lasted 2 to 3 minutes, and he really enjoyed watching himself wear it in the mirror. He thought he looked pretty cool.

Thanks to the Rare Diseases organization that sent us this cool mask!

And then he attempted to eat it. Practice session over. I washed the mask because it was remarkably slimy from all his drool despite being completely soaked from chewing on it. Rinse, dry, repeat again tomorrow.

Rinse & dry the mask, not Teddy.

Early Mornings that are Worth It

I used to like mornings. I would define myself as a morning person and enjoyed that quiet space when I could be productive, get a head start on baking projects, go for a run with friends or watch the news. But with my children, Teddy in particular, there is no sanctity in mornings anymore. Both my boys are early risers, but AJ is independent and knows better than to intentionally wake me unless he needs something (although sometimes he's noisier than he intends). Teddy, on the other hand, is contained to his room until we let him out. Sometimes our efforts to entertain him with toys that we set in there after he falls asleep works. Other times he empties his clothes drawers, despite the child safety locks, and dresses himself. Or takes the picture off his wall that he shouldn't be able to reach. Or kicks at the wall or the door until we come to do his bidding. There's nothing peaceful about mornings with Teddy, and there's definitely no sleeping in with him, unless Dave and I rotate turns on the weekends.

But, Teddy usually wakes up happy and rewards you with smiles and giggles, along with his demands. The challenge is that he wakes up incredibly early at our land. What's incredibly early? 4 a.m. is the earliest ranging as late as perhaps 5 a.m. I think his sleep cycle is really light then and that at home he can often doze back off, or at least roll around half asleep for a while. At the land, he rolls around and discovers there are others in his bed, so it must be time to play. 

Dave deserves sainthood because he's the one who usually takes Teddy in those wee morning hours. They often head to town to fill up the vehicle with gas, drive around our property looking for deer and generally just kill time until it becomes a more acceptable hour. I've offered to help, or at the very least tag team, so that Dave can get some additional rest. He finally took me up on that offer this weekend, so he took Teddy from 4:30 to 6:30, and I took Teddy from 6:30 to 8:30. 

Such pretty mornings. They'd still be pretty at 6 a.m. instead of 4 a.m.

Teddy and I first took a drive around the land in the Tahoe, mostly because that's where Teddy was when Dave handed him off to me. Then I loaded him into his running chair to go for a walk. We checked on the fire and walked down to the river. After about an hour, we headed back to the garage. We played LEGOs inside our hanging tent chair, which is large enough to fit me, him and the LEGO bin, but not with much room to spare. We had breakfast and finally woke up Dave for some family cuddles.

Early morning smiles. I think he's happy to have a stick to whack me.

For someone who wakes up at 4 a.m., Teddy handles it much better than most people would. He is in remarkably good spirits for the day and loves being at the land. More than one day gets pretty tiring, but it's amazing to see how well he holds up. If only we had his energy ...

We Won the Lottery 4 Times!

It's the time of the year where my stress levels naturally rise, wondering about the school year and what will happen. This year defies all odds, as we're looking for full-time in-home childcare who will take COVID seriously and follow precautions outside of work to keep our family safe. And that childcare provider is also filling in as the virtual learning supporter of a 3rd grader on top of whatever Teddy's education looks like. Right now, Teddy's schedule includes traveling to Appleton or Neenah for therapy 4 times a week. So this childcare provider needs to be an educator, therapist, chauffeur, entertainer and childcare provider for a non-verbal child who never stops and rarely listens. Sounds simple enough, right?

Actually, it sounds like an incredibly impossible order ... but I have faith. As I look back at the last 5 years, we have been blessed with absolutely incredible childcare providers. 

The first of our in-home childcare providers was a nursing student, Miss Katelyn. Miss Katelyn was fun, great with both boys, reliable, dependable and made our lives so much easier. We discovered that nursing students were a great match for Teddy's diagnosis, as the fear of seizures that got him kicked out of one in-home daycare, was not a concern for them. (And, thankfully, we've never needed that skill set when he's been in their care.)

Miss Katelyn was so amazing that when she could no longer work all the hours, we were concerned that she left too big of shoes to fill. But she referred her friend, who quickly became Miss Melanie to our family. Like Miss Katelyn, she was reliable, dependable, fun and a great fit for our family. She ran a slightly tighter ship, leaving our house as clean as it started every time, which is no easy feat with Teddy. She also diagnosed our boys successfully with impetigo, when we thought they just had a rash that would go away. Whoops! Unfortunately for us, both Miss Katelyn and Miss Melanie graduated and moved along to become real nurses. I'll remain forever grateful that after our ICU stay Miss Melanie was willing to come work with Teddy again for a day when we needed her. 

We had someone for just a couple weeks, who didn't work out well at all, before we landed on another friend referral from Miss Melanie. Her friend was pursuing a degree in human services but had her CNA license. That was the start of our time with Miss Bri, which thankfully hasn't ended and has just had a few breaks. Miss Bri took the bar and raised it even higher. She took the kids on so many adventures, heading to her family's lake house, inviting us to her graduation dinner, journeying to Bay Beach and taking the boys to the water park as she'd recruit friends to help her watch AJ. She spoiled our kids, not by giving them things, but by giving them great experiences and so much fun. We convinced her to stay on after she graduated for the summer and then miraculously convinced her to come back for another summer after that. Although she's looking for full-time work in human services now, she still does respite for us and is going to help us out temporarily as we start the school year.

If you have human service job leads, I know someone pretty awesome.

We transitioned to an agency for childcare during the school year, which worked out well for the first year but became a struggle with staffing last school year. They actually gave us notice right before Christmas, which meant we were looking for another agency this past spring. We found one, used them for 2 weeks, and then COVID happened. That meant we needed in-home care and needed it quickly. Fortunately one of Teddy's paraprofessionals had mentioned her school schedule didn't work for her to continue in his classroom but that she'd love to still see him. I offered her the chance to do respite, which with COVID evolved into childcare multiple days a week, which then became full-time summer employment. Miss Sigrid helped us through that rough transition to at-home learning and had as much success with Teddy as anyone would, especially with her background from working with him at school. 

Miss Sigrid has truly become a part of our family, especially with COVID. She took the virus as seriously as us, so we had no concerns that she would put us at risk. (Seriously, I think once she made it 5 weeks without grocery shopping!) We couldn't go out to eat, so we'd invite her to stay occasionally for dinner, which made it more fun for us and saved her on that grocery bill. She's been limited in the fun things she can do with the boys, but that doesn't stop her from making every day as fun as it can be. She's willing to pull Teddy along for bike rides, take the boys on walks to explore and has kept the peace during the times they drive each other crazy. When your circle of human interaction without a mask is as limited as ours, it's amazing how quickly she becomes a part of our family. 

So why do I know things will work out for the fall? It helps that we have Miss Sigrid helping as much as her school schedule will allow, which covers at least 16 hours a week. It also helps that Miss Bri will help out at least temporarily another 16 hours a week. That only leaves us with two mornings to juggle, which we'll figure out. But I also know things will work out because there's no way we're so darn lucky to win the lottery with our childcare four times in a row. God entrusted Teddy (and AJ) in our care, and he's been faithful thus far. He will provide for our childcare needs ... we just need to put forth the effort. 

Frankenstein

 Apparently Teddy didn't have enough nicknames that he needed to add options like Frankenstein, Stitch (with AJ called Lilo) and Crash Bandicoot. 

He's still happy after 4 stitches!

Ironically, this lovely mess happened when Dave was installing a camera in our sleeping room at the land to ensure Teddy is safe if we want to go down for a bonfire after he's asleep. When we're trying to keep him safe, he manages to injure himself.

Teddy was attempting to climb on a mini-stool made out of 2 x 4 lumber. It seems he was using it to be tall enough to bang on the window with other pieces of 2 x 4. It's not meant for balancing on top of, so he obviously toppled over and managed to spear his ear with the end of a 2 x 4.

He gouged it open to where the cartilage was visible, so Dave packed up the boys to head to the Viroqua emergency room. (I was home for work meetings, which is why Dave took the boys to the land in the first place.) Teddy was done crying by the time they were on the driveway, but he started whimpering as soon as they headed into the ER. Let's just say Teddy knows those type of doctor visits are never fun.

It took a headlock, some tears and some quick sewing by the ER doctor, and they walked out 4 stitches later. Teddy has no lasting impact from him, climbing on everything he can still. So he learned no lesson, got a wicked scar and proved that stitches are doable for Teddy without knocking him out. I guess he didn't learn anything, but we learned that at least!