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!

School Stress

Back-to-school season tends to cause me a bit of anxiety as I worry about all the things that aren't fully in my control, like whether Teddy will be to/from school safely, how he'll adjust to his teacher, if he'll get to integrate as much as we'd like, the calls from nurses when things go wrong, etc. This year should have been a breeze compared to past years as he has the exact same teacher who was amazing last year, and he's consistently had the same fantastic bus driver. By all means, it should have been our easiest school transition yet as it would be the first time he's in the same school with the same teacher.

But, there's still a global pandemic. Our school district released it's final plan today, although we were required to enroll our children in the virtual academy before this month started if that was our choice. The timing of that didn't make much sense to me, so I've spent several hours on the phone with various people within the school district the last two weeks. I've talked to the director of pupil services or something similar, the director of special education and Teddy's teacher. All were extremely good at listening to my concerns and questions, as we all recognize there are more questions than answers right now.

At this point, the district's plan is for either 100% in-person learning or 100% virtual learning for elementary students. If you pick the virtual option, you're committed for the entire school year. If you pick the in-person option, you may have periods of virtual learning depending on the phase the school goes through, or the classroom, as the year unfolds with COVID. 

Unfortunately, to protect Teddy, we feel we have no choice but to enroll AJ in virtual learning for the year. Although the school has a decent plan for in-person learning on paper, we are too skeptical (or realistic) to expect that everyone will do their part to keep schools safe. And, we realize that with how COVID spreads, there's still risk of contracting it even if everyone does their best. 

It's not so simple for Teddy. He cannot do virtual learning. He doesn't have the focus, the ability not to steal the technology and swipe to his heart's content nor the aptitude to do the virtual academy, which is a true 2nd grade curriculum. That definitely won't work. 

Although the school is willing to accommodate Teddy's inability to wear a mask, physically distance from others and follow basic hygiene principles like not licking things and washing his hands well, they also will need to make similar accommodations for others in his classroom. That means Teddy will be in an environment where he's fully absorbing the risk of others, which we cannot have with his health condition and likelihood of serious seizures. We need him in a controlled environment where he's interacting with as few people as possible who are doing all they can to minimize their risk, since he'll still get some risk from exposure to them. 

It appears, through multiple calls, that the person responsible for leading the charge to safely educate Teddy is his teacher. I don't envy that position, but he's the one who's apparently responsible to find the accommodations needed to safely educate and support Teddy, with the help of Teddy's IEP team. That same IEP team can't meet until the week before school starts because they're not technically working until then. His teacher knows Teddy well enough to recognize that he cannot be safely supported at school and that virtual learning isn't an option. So where does that leave us?

The best idea I've heard yet is homebound education, where an educator comes to our home a limited period of time, such as 2 hours twice a week. The challenge is that this appears to be the safest option for Teddy because it's a single person who'd be wearing PPE, yet it's an option the district's insurance policy and the public health department are saying is too risky at this point because that educator has been in other school settings and the element of unknown risk in going into multiple homes. So, it's not safe for us to have a single person with PPE come to Teddy, but it's safe for us to send him to a school with hundreds of other kids when Teddy won't wear a mask and invades personal space like it's nobody's business? Not to mention that he wouldn't be able to integrate at all because that's not allowed, so he won't reap the benefits of watching his age group peers to learn appropriately with them. 

At this point, we're still going to push for some type of homebound education in person for Teddy. We feel like we can piece together just about everything aside from the actual educational component. Our plan is to use outpatient therapy for OT, PT and speech. We've been doing those services through Children's Hospital through the summer months, and we're comfortable with their safety practices and the controlled, sanitary environment. That covers all those areas without the school needing to find a safe solution, which would be virtual therapy, which is not realistic for Teddy. We're also working to add back in music therapy, which again is a controlled environment 1:1 with someone who will be taking all the safety precautions. This therapy is something Teddy enjoys, will cover the music piece he's missing and encompasses really all his therapy goals at once. So all we need to figure out is a plan for the educational piece.

Oh yeah, don't forget childcare. We need someone to be in our home with the boys while we work (a combination of working from home and at our offices) full time. That person needs to be someone we trust to be safe both here and outside of work to protect Teddy. That person needs to take Teddy to all those appointments I just mentioned each week and likely facilitate a few aspects of learning for Teddy. That person also needs to support AJ as needed through the day, troubleshoot any virtual learning pieces for him and help him stay on track with his learning because the 2-3 hours in the evening before bedtime aren't going to be enough for us to work through an entire day's worth of learning.

On the bright side, after this year, any return to school in the fall should be a breeze, right? There's no easy decisions this year, and my thoughts and prayers are with all navigating these uncertain times. 

Neither of My Children Are Typical

We've suspected since Teddy was 5 months old, that there was something different about him. His genetic diagnosis with CDG-PIGN in 2015 confirmed what we already knew ... that Teddy wasn't a typical child. 

As the years have progressed, though, it's become crystal clear that neither of our children are typical. Although they both share many of the traits of other children, such as a desire to play, laugh and have fun, there's defining qualities that set each apart from their peers. For Teddy, his genetic diagnosis is the defining difference. For AJ, I'm honestly not sure if it's who he is or who he became because Teddy is his brother. I think AJ is inherently a sweet, considerate and sensitive child. But I know that living with Teddy has also shaped him already into an even more compassionate, thoughtful person. 

All siblings get on each others' nerves and fight in their own ways, and our boys are no different. Teddy wakes up some mornings determined to live up to his birthday shirt of shenanigator (one who instigates shenanigans) with AJ as his primary target. There may be headbutts and tears on those days. Yet, when AJ and I spent some time reflecting about what we're most grateful for during the pandemic, the thing he was most grateful for was having Teddy as a playmate and brother.

AJ recently decided he was going to read this entire blog, which has prompted some questions because I certainly didn't write this blog with children as the intended readers, much less AJ, at least not at this age. But he loves reading the stories of our life, so I've encouraged him to pose the tough questions to me instead of the childcare provider at least. One of those questions centered around diagnosis day, when I shared the tremendous guilt we felt that AJ would never have a typical brother. He couldn't understand why that was a bad thing, so I asked if there weren't times that he maybe wished his brother didn't have CDG? He answered immediately, no, that Teddy is the best brother in the world and that he loves Teddy. 

See, that's one of the amazing thing about AJ. Although there's things about Teddy he wishes were different, such as Teddy giving him some personal space, not being aggressive toward him or the ability for Teddy to talk, he loves Teddy as he is. 

Then there's mornings like this morning that make up for so many of the fights. I was trying to get through a few work e-mails since both boys remarkably slept past 6:30 a.m. I heard Teddy stirring in his room, but I continued working since he wasn't unhappy. I heard AJ wake up, but he never came in to say good morning, so I continued working while keeping an ear on Teddy's room. When I wrapped up a few of the e-mails, I headed to Teddy's room and had already started to open the door when I saw this note:

Handwriting is still a work in progress. 

As I cracked open the door, I saw a poopy diaper already bagged up on the bed, ready for the garbage can. AJ had assisted Teddy in putting on his shorts (although they still ended up with both legs through a single hole). He had plans to get Teddy ready for the day, read him stories and let me "sleep in" until 7:45. Seriously, what other kid does that? What other kid is willing to change his 7-year-old brother's poopy diaper? Without being asked? 

So, my realization today was that neither of my boys are typical. And I'm all the more blessed because of that. 

Sidenote: When Teddy was diagnosed with CDG-PIGN, I quickly realized the word normal could be hurtful. If I compared Teddy to other children and used the word normal to describe other children, that implied that Teddy abnormal and sounded like he was inferior to the others. So I settled on the word typical to describe other children who didn't have a genetic disorder like Teddy.