Halloween - the Best Therapy

I think it's safe to say that Halloween is Teddy's favorite holiday. Now that he's past the phase of being freaked out by costumed characters, he loves most everything about Halloween. (There was one scary beast character that got the side eye from Teddy.) And I loved watching him experience everything!

I say most everything because he'd really love everything about Halloween if he was allowed to enter everybody's home, traipse into their backyards and explore their garages. Those were the only disappointments for the evening when I redirected him from those activities. 

I was so proud of Teddy this Halloween. That might sound odd because all he had to do was wear a really cute costume and get candy, right? When you think about all the effort and skills that go into trick-or-treating, it's like every therapy rolled into one activity that lasts a couple hours. And Teddy rocked it. 

Wendy with her beloved Peter Pan and his Shadow.

From walking so much (with only a few breaks in his chair to rest) to stepping up to every front porch because everyone has a step I swear, he did so much physical therapy. He only fell once, caught his balance several times and trucked through ditches like nobody's business. 

He knows the sign for candy or treat, so he signed that at many houses, along with thank you. Near the end, folks got more of a wave than signs, but they still knew what he meant. (And Dave looked up how to sign trick or treat, so we now have a year to practice the full sign!) 

Grasping candy in a bowl and taking only a piece or two, much less letting it drop into your own bucket, is monumental from a fine motor standpoint. His therapist would be proud of his release skills as he practiced all night, not to mention when he decided to carry his own bucket.

That was my favorite moment. Even though Teddy was putting candy into his bucket all night, I was carrying it because he was holding my hand part of the time and holding his beloved sword that he was so proud to have. All of the sudden, though, leaving one house, he looked at the bucket 2/3 full of candy and realized he should be carrying it. He threw down his sword and used two hands to pry the bucket from me. From that point forward, I was not permitted to carry the bucket and was relegated to sword duty. He was also extremely concerned when he climbed in the car that his candy bucket wasn't in his arms.

This was the few moments Teddy was actually with the kids. I'm not creeping behind him. Oh wait ...

Teddy is such a social butterfly that going from house to house to see all the people is completely his jam. He honestly thought we were supposed to go inside each house because why else would they open their doors. He did amazing at listening overall, going to each front door, ringing or trying to ring the doorbell and then moving on to the next house. Seriously, taking him trick-or-treating was absolutely amazing this year!

I think we should consider trick-or-treating once a month as therapy. I think Teddy would be on board, but now I need to convince my community. 

Back to School Part 2

Today was Teddy's first day back to school, although school started September 1. The reason is he's doing a modified program again this year due to COVID. Essentially he's doing homebound education due to the fact that he cannot wear a mask for an entire day, he puts everything into his mouth to chomp on it and licks random things and has a propensity for seizures when he's ill (and licking things, putting other people's stuff into your mouth and improper mask wearing are all great ways to get ill particularly with COVID making a resurgence). 

Teddy's already a third grader!

So his school program looks similar to last year where he will have 30-minute blocks of time 1:1 with his teacher twice a week for academics. Do we wish it was more time? Absolutely! Is an hour of 1:1 instruction a week a really good starting point for Teddy? Yes. His childcare provider supplements that education with activities at home, either ones provided by school or ones we create. Truly any sort of play with Teddy can incorporate the concepts he'd work on in the school setting, and she has the time to do that when she's alone with him for the day.

Although this is another weird academic year for Teddy, honestly every year is weird for him. He changes grades without changing teachers or rooms, aside from the classroom where he integrates. (And right now, that's non-existent with his hybrid education last year and this.) It's always weird, but in some ways it's easier because we have the same teacher and similar structure. But it never quite feels like he's advancing a grade the way it does for AJ.

Additionally, rather than try to coordinate with all his school therapists, we are continuing with outpatient services for occupational, speech and physical therapy. We trust their protocols and know he's getting quality therapy and more of it than he would in the school setting, so it works for right now. He's also doing music therapy, which he enjoys (most days) and builds on all his goals. 

New this year is adapted physical education. At Teddy's IEP last month, we met his new adapted PE teacher. They discussed the activities sent home last year, which we never did because they weren't quite adapted to Teddy and frankly were overwhelmed with everything else for at-home learning. During that discussion, we brainstormed the idea of Teddy attending his adapted PE classes as a way to begin reintegrating. It's one of his favorite things, so we knew he'd love it. It's also a setting where the kids are in a big room, and there's plenty of adults to assist Teddy in keeping his distance for things like stretching and wearing a mask properly. It's a short enough time (less than 30 minutes) that Teddy can, for the most part, successfully stay masked. 

Today was his first day for his 1:1 instruction with his teacher, as well as his adapted PE class. Trust me, the PE class is as much for reintegrating Teddy to prepare him for returning completely once he's vaccinated as it is for us as parents. We both have some anxiety because we know the vaccine won't provide Teddy the same measure of protection as it provides others. Given his diagnosis, the vaccine will still be effective to some degree, but it's hard to say how much protection it will provide. That certainly makes us uneasy, yet we realize at some point we need to find the balance if COVID never goes away completely. 

Let's just say today was a success for adapted PE. He was super excited to attend today and may have tried to drag his teacher back to the gym when it was over. I'm still waiting to hear if he tried to drag his teacher to the gym when he returned later in the day for his 1:1 instruction.

Non-Verbal Communication Misinterpreted

Today I took Teddy to music therapy for the first time since the pandemic. Pre-pandemic, I accompanied Teddy to music therapy each week, so I'm extremely familiar with it. We put services on hold through summer and resumed this fall to round out his therapy for his education this school year. His therapy sessions are smack in the middle of the work day, so our sitters have taken him each week. 

But our sitter was off today, so I took the day off to be mom because Teddy had physical therapy this morning, music therapy this afternoon and a meeting with his caseworker. As we drove to music therapy, I asked Teddy which building it was at because the program has expanded that therapy is now located in two buildings, one on either side of the road. He didn't point at the first building and was very excited when we parked at the second building. I was happy to see how excited he was to attend music therapy.

We waited until exactly 5 minutes before his appointment to minimize waiting room time and headed inside. I kid you not, Teddy was so excited he ran to the front door. We went into the waiting room, and he sat down nicely. I asked for his jacket and asked where I should hang it, and he pointed to the coat rack. He bounced around a few of the chairs, super excited to be at therapy. Then he was pointing to a therapy room, so I said, "Oh, that's where you do therapy?" He tried to go into his therapy room, but I told him we needed to wait for his therapist.

After several minutes, right when I expected his therapist, the lady sitting at the desk came to us and informed us that Teddy's therapy was across the street. (I'm guessing it took her a few minutes of texting Teddy's therapist to make sure she hadn't moved the location ... either that, or she was so entertained by Teddy's exuberance that she wanted to soak it up.) 

As we headed across the street, I asked Teddy why he didn't tell me. The little stinker was so excited because he thought we were going back to somewhere he hadn't been in a year, not the same ol' place he goes every week with Ms. Bri. 

Guess there's probably some merit in this new communication device that's supposed to arrive Monday ...

Tracing Triangles

When I daydreamed about having children before we were blessed with our boys, I never could have fathomed what our reality would be. It's messy. It's chaotic. It's stressful. It's fun. It's unexpected. It's incredibly blessed. 

I never imagined Teddy and all that he brings to our lives. (It's pretty tough to picture something you never knew existed, at least when you're a concrete thinker like me.) Last week I was working on some school activities with Teddy, writing with dry erase markers on tracing patterns. I did hand-over-hand, guiding his hand along the lines and making fun sounds to keep him engaged. Then I asked him to trace the triangle on his own. I pointed to a corner and said, "Start here." I then pointed to the next corner and said, "Draw to here." We repeated that for the three sides and ended up with this.

The triangle was traced in purple, amid all the pink scribbles that are the norm.

Now, that might not look like anything remarkable to you. In fact, you might struggle to consider that a legitimate tracing of a triangle. In my eyes, though, that was an incredible accomplishment. It was the best tracing I've seen Teddy do with only verbal cues. He focused on the entire task and made something recognizable to me as a triangle. 

As I praised him, I cleaned the sheet to try again. The next time he did even better.

Look at that pretty pink triangle!

I could not believe his triangle. Teddy got hugs and high fives for a fantastic tracing job. I quickly snapped a picture before it was scribbled over or erased. First I text it to Dave. Then I shared it on Facebook. Then I e-mailed his OT and his teacher. Do you get the picture of how proud of him I was? 

The love and support for Teddy came through on Facebook and in replies from the messages I sent. We're so blessed to have so many in our lives rooting for Teddy and celebrating his accomplishments when they occur, regardless of when others achieve those same milestones. I know that tracing a triangle, when you're 7 years old, is not typically worth a second thought. But life without Teddy isn't typical. It's unexpected. It's a journey to discover what he knows, what he can do and, sometimes this is the kicker, what he's willing to do. That little boy can do so much more than we give him credit for because more often than not we can't coax it out of him. 

It's oh so frustrating to be Teddy's mom at times (and that's a feeling I get most days, at least for a few moments). But there's unlimited joy inside him, and that radiates out to others. There's also moments like this that we can see for the gifts they are: a reminder of how far we've come, an accomplishment to celebrate in the moment and hope for what will come. 

Sensory Squish

Teddy needs a lot of sensory input, which is common for kids with PIGN. Whether it's their lower tone, their need for proprioception or something else in their wiring, these kids need to feel things in big ways. Think weighted blankets, big hugs, tight squeezes, as well as laying on the floor with feet up, rolling up in a yoga mat or other ways to ground the body. 

We learned about grounding techniques through music therapy and have put them into practice. When Teddy is particularly aggressive, sitting on AJ or pushing him, we try to redirect to these techniques to get him to settle down. We've seen some success with it, but we're in a rough stretch lately where Teddy just wants to boss AJ around, sit right on AJ, and be generally a little jerk to him. AJ ends up storming off in tears, and Teddy doesn't quite get why AJ doesn't want to "play" with him. I think honestly the two of them have had too much time together since they spend so much more time together without the normal structure of school or after-school care due to COVID. 

We also incorporate sensory into Teddy's other therapies, primarily as a reward. For example, at PT all he wanted to do with the mats was crawl underneath them, so now he has to "earn" squishes by doing sit ups. His PT will have him do a set of sit ups, and then we'll squish him a few times in between the mats. Then we repeat until he moves onto the next thing that catches his attention.

Knowing his love of all things sensory and squishing, we purchased a sensory body sock for him for Christmas. I actually had it before his birthday last year but figured it would be way too warm and didn't want him to cram me into it in July. Well, I was smart enough to wait until Christmas to give it to him, but I wasn't smart enough to buy a big enough sock to fit in there comfortably with him ...

See, we clearly both fit. It's not so bad ...

It took him a few weeks to warm up to it, but now he will routinely climb into his body sock. Or he'll make you climb into it. (So far, he's gotten his grandma, brother, both babysitters and mom in the sock ... not all at once.) And then he'll climb in, too. Let's just say I should have gotten a larger size. Both he and AJ fit in there with my mom, although I'm not sure how. My favorite was when I was in the body sock with him, and then he looked out at Dave and pointed to exactly where he wanted Dave to be inside the sock with his vocal demand, "Eh!" Dave politely declined, for some odd reason.

If you ever happen to visit and are socked by Teddy, the best advice I can give you is willingly climb inside first. Stay standing, and then help him climb in. That allows him to drop to the bottom by your feet, so the rest of your body isn't pummeled by his gracefulness quite as much. 

I suppose the best advice I could give you is to run away if you see Teddy coming toward you with something blue in his hand ...

... or is it? Definitely should have bought a bigger size.

Ughhhh...

 It's hard enough being a parent. It's extra hard to be a parent of a child with special needs. Do you know how much I hate calling to schedule therapy appointments through the scheduling system? I hate calling insurance more, no doubt about that, but my 25-minute call to schedule therapy had me just about in tears.

Mind you, we waited probably close to 6 weeks for the insurance companies to once again deem that Teddy needs therapy. I guarantee you that 6 minutes of observation would demonstrate that need, but let's wait 6 weeks without him getting necessary services. Then, both his OT and speech approvals came through within a week of each other, so I could schedule all his appointments with a single call.

I started with PT to add whatever appointments I could since you can schedule 2 to 3 months out and things fill up fast, and then the same person could help me with OT. Except, she really couldn't help much. She offered me an appointment next week, which was great, but the next available appointment after that was December.

Yes, December. The authorization we just waited 6 weeks to get approves Teddy for 18 visits prior to December 31. Yet, the next available appointment except for one lucky cancellation is the month his authorization expires. So, I asked about other therapists, even though Teddy has seen Ms. Kathleen for 6 years. The response was, well who else can he see? I said I'd assume he could see any available OT, and she corrected me and told me that wasn't possible as they had different specialties. Guess what? It's a moot point since both of them are booked until December as well. So, I took what I could get, sent a message to his therapist to see if she could find any available times in October or November that aren't on her schedule and then got to hold to transfer to the person who schedules for speech.

Fortunately, scheduling for speech was simpler, with much more availability. That still doesn't change the fact that I hate calling central scheduling. 

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. 

The End of an Era

I realize it's been two weeks since I've posted, but that's not for a lack of writing topics. The last couple weeks have been particularly eventful at work, Dave has started back to school already and we've been gone the past couple weekends on adventures. When you add that with all the little things to do before school starts (like open houses, meet-n-greets, arranging childcare, pestering the bus company, figuring out how the religious education system works, etc.), it's been a bit challenging to pull myself away from The Great British Baking Show to update this blog in the evenings.

Anyways, last week was the end of an era for Teddy. It marked a stop in all outpatient therapy services, as well as horse therapy, as Teddy transitions to full days at school. . Teddy's had breaks in different therapies before, sometimes even a month or two, while we waited for the approval process to go through each time. But this is different. More permanent.

It's not that Teddy is magically ineligible for outpatient therapy. We could continue services, most likely only through our primary insurance since Medicaid believes that school and outpatient are duplicity of services despite distinctly different objectives. It's a matter of time and available effort, both for Teddy and myself. No matter how I tried, I couldn't figure out how it would work for Teddy to spend all day working hard at school and then ride a half hour to work for another 45 minutes when he's already exhausted. (Horse therapy was even harder to try to figure out because that's an hour drive.) Then add in the factor of trying to schedule those appointments after school hours and on days that I'm not working. It just didn't make sense.

It's not that Teddy wouldn't benefit from therapy because he does. The more therapy he receives, the better his chances of progress. But only if he's willing to work through the therapy sessions. Given how much he fights the activities when he's tired or simply not pleased with the tasks, I envision trying at the end of a long school day to be a miserable experience for all involved. Or at least an unproductive one.

So last week was bittersweet. Teddy's been doing horse therapy for more than a year and really enjoys that. That's the one therapy that I'm planning to try to fit into our schedule for spring semester because it's distinctly different than the other services he gets at school.

As for the rest, I'm hoping that last week was merely us saying, "See you in a few months when school gets out," rather than a goodbye. Teddy has worked with the same three therapists since he turned one: Ms. Pam for physical therapy, Ms. Kathleen for occupational therapy and Ms. Caitlin for speech therapy. We have spent countless hours between their therapy rooms and the waiting room. (My rough estimations would be at least 500 hours driving to/from and attending therapy appointments.) We've brought cookies and gifts for the holidays, shared milestones and memories and got so much support and encouragement from them. There were hugs goodbye for the boys, one last parting gift of homemade checkerboards from me to them and books and gifts for the boys.

Teddy likes his giant foam puzzle that was his parting gift. Particularly ripping it apart all around the house.

As they said, it's wonderful that Teddy is off to school full time to make friends, learn new things and build his skills, but it's bittersweet to say goodbye to therapists who became a part of our family.

Brave is not the Same as Fearless

Yesterday at hippotherapy, Teddy's therapist commented on how brave Teddy was. My response was, "There's a difference between bravery and having no fear." She meant that Teddy was willing to try whatever position they maneuvered him into on the horse with complete confidence that they'd keep him from falling. They had Teddy ride side saddle to engage different muscles with the side-to-side motion. They had him lay on his belly across the horse to work on his neck and core muscles. They waited for Teddy to notice he was sliding off the horse and encouraged him to readjust himself, which he actually did several times.

His fearlessness showed  through at the parks we visited yesterday as well. There was the time he was going to just go off a 4-foot drop that was at the top of the rock climbing wall. He didn't try to walk off it. No, he safely sat down on his butt and was going to scooch off it. Safely, of course. (I caught him.) Then there was the time he thought it would be a good idea to walk across the uneven steps that were suspended 3 feet off the ground, with each step about 1 foot apart. After catching him multiple times, I lowered him to the ground.

As much as he does need to develop a healthy appreciation for his own safety, his fearlessness gives him the freedom to try new things and continue to push to do more to keep up with AJ and the other kids. He walked, safely and successfully, up and down many gradual ramps at the park all by himself without holding onto anything. He walked up a steeper ramp with rock climbing holds while holding onto the rails, all by himself. He continued to pop up to his feet whenever he fell (or dropped to his butt to safely navigate an obstacle that he knew he couldn't manage on his feet).

That fearlessness gives him freedom ... and lots of scrapes, bumps and bruises. (Most of which he doesn't even notice, so I suppose that further enables his fearlessness.)

Horse Show and Family Fun

This past weekend was everything good about summer all wrapped up into two days. Saturday was the annual horse show at Exceptional Equestrians, where Teddy attends hippotherapy. Since it was our first time participating, we had no idea what to expect and were pleasantly surprised by what a nice event it was.

Teddy thinks it's super fun to be in the back of a SWAT vehicle.

Teddy was fascinated by the SWAT vehicle that was there (because of the local police department's partnership with the barn for its officers who patrol on horseback). I'm pretty sure he's the first person who's ever licked that SWAT vehicle. And one officer now has Teddy drool on his helmet strap, but Teddy thought he was cool wearing the big helmet.

This was how happy Teddy was to show off his skills. (Or just ride his horse.)

My mother, aunts, cousin and her child came over for the day, so AJ had a friend to play all the little games. They both walked away with armfuls of loot, plus balloon animals. Dave's folks came as well, and they thoroughly explored the SWAT vehicle as Teddy kept leading them there while the older children played games.

Teddy's trademark smile.

Teddy rode for about 15 minutes with 3 other riders. He loves watching other people and smiles when he sees them, so he had a huge grin on his face most of the time. He did an awesome job telling his horse to start walking by patting her. At the end, each of the riders was presented with a trophy, which Teddy thought was pretty darn awesome. (And Teddy has a cool shirt from the event that he needs to grow a bit to fit.)

Hey look! They gave me this shiny thing!

We stayed for AJ to ride during the break, and he thought it was pretty neat to ride a horse. Then we ate lunch there, supporting the barn while enjoying burgers and brats.

AJ enjoyed riding his horse. It was neat for him to get a chance to ride.

After the horse show, we went to Bay Beach with my family. Bay Beach is a small amusement park in Green Bay with rides ranging from a quarter to a whopping dollar (for the roller coaster). For $20 of tickets, we had a couple hours of fun with every adult enjoying at least one ride. Trust me, the kids enjoyed all the rides. Teddy still loves the carousel, but he thought he was pretty darn cool riding in a little car ride by himself. (There were a few rides we felt comfortable having Teddy ride alone because they had seatbelts to contain him and were pretty low key. Let's just say that when Dave put Teddy on the swing ride, I headed the opposite direction for the bigger swings to avoid witnessing that. It turned out fine, though.) I thought it was pretty darn cool that Teddy could walk up some of the 3 flights of stairs for the giant slides ... last year I had to carry him the entire way up!

It was an absolutely perfect day spent with family making memories!

Denied

December was the last time Teddy had outpatient physical therapy approved by Medicaid, which is his secondary insurance coverage. January is when the denial for PT arrived, after a few weeks of processing. The first week in March is when the hearing happened, via telephone of course to prevent me from dramatically marching Teddy into the hearing to show everyone why it's obvious he needs both outpatient PT and PT in the school setting.

I do realize, of course, that my dramatic entrance entrance would have been followed by me spending the entire hearing wrestling Teddy, which wouldn't have been overly effective. Not that it matters because last week in mid-April is when the hearing decision upholding the denial arrived in our mailbox.

It took 4 months to go through the process to get told there's no way Medicaid will cover PT for Teddy through outpatient clinic while he's receiving it in the school setting ... but we could file a request for services now to see if Medicaid will cover PT during the summer since Teddy doesn't qualify for summer services through the school. (That's a whole other bucket o' slimy worms that I'm not going to dig into right now.)

Let me do the math. Mid-April plus 4 months equals mid-August. That's right when Teddy's about to go back to school where he'll be getting PT services again. And that means, they wouldn't cover services because it would be duplicate services.

What are the odds that Medicaid grants the request right away for summer? How much will my PT hate me if I make her go through all the paperwork and process all over again? Why do we have to wait so long to get an answer on therapy ... and why do we have to request services every 3 months or so? How on earth does OT get approved right away for Teddy (not that I'm complaining!)?

So for now, we say to heck with Medicaid. We're trying to work with our clinic to run his therapy services for PT through only our primary insurance, which theoretically will work to get Teddy the therapy that benefits him.

And we're hoping it works for speech, too, because we just received that denial. I'm not sure I have the wherewithal to go through that appeal process, only to have it denied with the exact same language as the PT hearing decision I have in my hands.

I Love My Lips!

There's a Veggie Tales song that Larry the Cucumber sings called, "I Love My Lips!" Rather than a detailed explanation on Veggie Tales and singing cucumbers, let's just go with it's a Christian-based series for children that included movies, books and more. (And I was into Veggie Tales when I was in a high school ... guess I never discovered it as a child and just liked it when I did.)

Anyways, that's a pretty accurate description of Teddy's last two days. At OT yesterday, he was poking his index finger into peanut butter and then sucking it off. The idea was to focus on isolating and strengthening his index finger while keeping him motivated with food. (He's my child. He loves peanut butter.) Well, he got a glob of peanut butter on his upper lip, and he actually noticed it. He tried to figure out what was there using his tongue, and once his OT showed him a mirror, he was able to lick off the peanut butter.

Now, I get it's not remarkable for most people to lick food off their lips. But this was the first time I could recall Teddy noticing the feeling of having food on his lips and then maneuvering his tongue to get it off. For him, that's quite the accomplishment of cognition, motor planning and muscle coordination.

Don't get me wrong, the kid licks and sucks everything. Handle on the shopping cart. Yep. Doorknob. Yep. Heating duct in our basement? He even convinced his older brother to try that one. But to stick out his tongue to retrieve food from his lips was a first.

Then tonight during his bath, AJ was blowing bubbles in the water, and Teddy joined right in. His swim teachers have said he's blown bubbles a few times, but to be honest, I thought they were exaggerating what was really his attempts to see how much of the pool he could drink. But tonight was parent-verified bubble blowing.

It still feels weird to be excited about licking peanut butter off his lips or blowing bubbles in the bathtub, but I'm OK with weird.

Hippotherapy

Teddy had his first hippotherapy session yesterday. To me, it looked more like a horse than a hippo. (I know, I'm such a comedian.) Hippotherapy is therapy done using trained horses, along with volunteers, and a licensed therapist.

For more than a year, different people who support Teddy have suggested that he could benefit from hippotherapy. Simply riding a horse causes a person to engage an awful lot of muscles, which is great for Teddy to strengthen his core. There are plenty of opportunities for fine and gross motor skill improvements as well as chances to work on his receptive and expressive communication. Basically, it is a therapy that has the potential to help Teddy's overall development.

The reasons it took us so long to commit to hippotherapy, when it sounds like such a wonderfully beneficial thing, is partly due to cost since it's not a covered service by our insurance or Teddy's county program. Also, there's not an abundance of hippotherapy programs in the area. There appear to be some therapeutic riding programs closer to our house, but the only licensed program is 45 minutes away in De Pere. Last but not least, it was one more thing to do.

Still, we thought it was worth the hassle and cost to at least try it for Teddy and see how he responded. I was quite surprised (not pleasantly) that Teddy seemed terrified of the horse when we went for his screening. (I almost typed screaming ... that's what he was doing.) They managed to get him on the horse for a quick lap after AJ rode to show him it wasn't scary. He warmed up a bit, but he was still uncertain about that giant horse.

When we arrived yesterday, we were about 10 minutes early. That gave Teddy the chance to watch through the windows as someone else finished her session. As soon as the therapist smiled and waved to Teddy, he was so excited. He watched the horse non-stop until it was time for his session, and he went right up the ramp to his horse, Dakota. (That's a whole other story ... AJ's favorite cousin's name is Dakota, so now he would like to ride a horse named Dakota.)

Maybe he needs cowboy boots.

Teddy did awesome with his first session. He did well supporting himself without slumping for about 25 minutes and then needed much more prompting to sit up properly. He interacted with the therapist and the different toys and activities. He even twice managed to get Dakota walking by patting her when the therapist said "walk on." I'm excited for him to have the opportunity to communicate by learning the signal to make Dakota walk, so it was neat to see him do it twice at his first session. I'm certain it will take more time for it to become a constant skill he does, but I already see the potential.

He really seemed to enjoy it, getting a big smile each time his horse started walking and each time he walked by where AJ and I were watching him. AJ took quite a few videos, and I even managed to use my phone long enough to do one:

And, if we're being real, he didn't scream, he didn't fight to get off the horse and he didn't fall off the horse because he collapsed his weight. Those were all things I thought could happen, so I would have deemed it a success if they didn't occur.

So Many "New Skills"

When Teddy masters something, it's referred to as a new skill in our house. Lately it feels like he's made so much progress. In reality, it's probably all the little improvements are now coming together into noticeable progress.

At his occupational therapy appointment last week, his OT called Teddy her star pupil because of how well he attended to tasks and did at completing those tasks. The fact that he twisted off a jar lid was particularly impressive to her, earning him that high praise.

One night this week, Teddy pushed his chair by the light switch, climbed on his chair and began turning the dimmer switch causing the lights to go off and then back on and then back off and then back on. He giggled at what he could control, AJ narrated the situation, and Dave and I both snagged videos of it after watching in amazement at first. He rotated his wrist to turn the dimmer switch like it was no big deal.

In addition to his twisting and wrist rotation skills, he's also becoming much more interested and capable in helping to dress himself. Recently, he's managed to get his shoes on (without his braces, but still). He's also managed to pull on a pair of AJ's socks. He's gotten AJ's pants on correctly and pulled nearly up to his waist. He's had an interest in putting everything on his feet, but now he's starting to understand and be able to coordinate how his clothes go on his body. He actively assists when getting ready for swim class by stepping into his swim diaper and then his swimsuit. (Now it would help if he looked, so he had some idea where he was stepping in relation to the diaper or swimsuit.)

Today, instead of napping, he decided to raid his closest instead. After the poison control fiasco, he's pretty well limited to diapers and wipes that he can reach. (Oh, and that screwdriver that apparently fell this week. Nothing like walking into your child's bedroom to get him ready for school to be greeted by him holding a screwdriver like he's about to shank you.) Usually he pulls out all the diapers and arranges them as artwork around his room. Today he decided he would much rather go swimming that sleep, so he pulled on a swim diaper. He might have been able to get it all the way up had he not put two legs through the same hole.

Sleep? No, I'm ready to swim instead.

It's just amazing to us how much progress we've seen in the past few weeks. As his teacher was praising his wrist rotation skills, my comment was, "Nothing's sacred now, is it Teddy?"

Nothing is folks, nothing is.

And that's a good thing.

PT Appeal

I've talked in the past about not accepting an insurance denial, but today was a new experience in the world of insurance appeals for me. Teddy's physical therapist submitted a request for 5 visits, one a month, back in November 2016. In January 2017, his state coverage (which is his secondary insurance) finally decided to deny the request.

I filed a letter to appeal that decision within a day of receiving the denial. A couple weeks later, I learned the next step in the process would be a hearing with an Administrative Law Judge (ALJ). That threw me for a loop because I had expected some sort of record review along the lines of previous appeals.

Fortunately, my requests for assistance through the Congenital Disorders of Glycosylation (CDG) Facebook group and PIGN Facebook group were met with an immediate positive response. A few people provided reference papers and other documentation to support the medical necessity of physical therapy for similar diagnoses. A mom whose two sons have a similar diagnosis to Teddy promptly connected me with her friend, who has extensive background within insurance companies. This friend of a friend, neither of whom I've ever met, spent a half hour on the phone with me walking through what I needed to do to prepare. Another mom whose daughter has the same diagnosis as Teddy wrote a thorough patient/parent testimonial regarding the medical necessity and benefits of physical therapy for her child.

Of course, this appeal process also required me spending nearly 1.5 hours on the phone on hold with various doctor's offices and Medicaid itself to try to request different documentation ... which I never really received. In fact, I spent nearly an hour on the phone requesting something from Medicaid only to receive a useless 1-page sheet that wasn't anything along the lines of what I requested.

Then last week I received Medicaid's position statement, detailing why PT was denied. Apparently the denial wasn't based on the fact that PT wasn't medically necessary as much as the fact that it's a duplicative service because he receives physical therapy in the school setting. In my mind, that weakened the really strong argument I had prepared about strictly the medical necessity of the service. I spent the remainder of last week on my runs (which I should be doing a run right now instead of rambling here) plotting my arguments, compiling my potential exhibits and worrying about the outcome.

And then I had two sick children this week, with Teddy home from school every day. That pulled my attention from the appeal somewhat but also eliminated other time I had planned to review and prepare.

Today was the hearing, which gave me a sense of deja vu. In my life before kids, I attended many unemployment hearings in my role as HR Director. The format of this hearing was identical to those hearings. Who knew all those hearings would serve as practice for this?

We'll know within the next month whether the denial is reversed. So, if it is reversed, does that mean he gets 5 PT visits in 1.5 months since it's taking 3.5 months to go through this process?

Tell Me What You Want, What You Really Really Want

Now that I've inserted the Spice Girls into your mental soundtrack with my subject line, I can talk about Teddy and speech therapy.

Teddy's been receiving speech therapy for three years, with intermittent breaks while we wait 2 months for insurance approval. (This is after we had to appeal to even receive speech therapy because our insurance initially denied the service for Teddy.) We see a wonderful person named Ms. Caitlyn, whom AJ, Teddy and I all adore.

At Teddy's appointment last week, she had a bucket of testing toys out to assess Teddy at his appointment last week because it's that time again to submit to the insurance gods for approval. (They aren't gods. They just think they are.) I'm not a big fan of the testing toys because it's so hard to convince Teddy to do what he's supposed to do on command, even if he understands the request. Teddy's not a fan either because every other toy in Ms. Caitlyn's room is far more exciting than the testing toys, especially the ones AJ is noisily playing with at any given moment.

Still, we all survived the testing, and I was surprised that Teddy received credit for demonstrating knowledge of a specific item 4 times (essentially picking the picture out of the group of pictures). He even touched the correct item the first time and then used eye contact. Now, how much of that is luck and how much is actual recognition might be a bit debatable ... but his actions seemed intentional and, by golly, he got the credit for the testing score.

Teddy scored at 1 year 9 months for his receptive communication, which is how much he comprehends of what is communicated to him. He scored at 1 year 3 months for his expressive communication, which is how much he can communicate. Now, I get that Teddy has a whopping 3.5 years of life experience under his belt, but I was pleasantly surprised with his scores. When Teddy was first assessed for speech therapy, he scored at less than 1 month. That means he's made tremendous progress in the past three years, and I'm confident he'll continue to learn more and different ways to understand his world and communicate his wants and needs.

These test results certainly don't define who Teddy is, but they do make me wonder, along with his recent request to play outside, how much Teddy tells me that I just don't catch because I'm not paying enough attention to his subtle requests.

Thanks in part to Teddy's awesome progress, and in part to Teddy's awesome speech therapist who always has something encouraging to say to Teddy (and me), I'm optimistic for all the times when Teddy will tell me what he wants, what he really really wants.

Struggles of Speech

Teddy's the strong silent type. As in, he's rarely vocal. (And he's extremely strong for such a child with hypotonia. That kid has grip strength.) Teddy first babbled right around Easter with bababa and mamama. Since then, he's been hit or miss with his babbling. We struggle to understand his communication, and it's been a slow process.

We've been approved for speech therapy since Teddy was about 18 months. Speech has always been the last therapy to get approved. It was the first to be denied. It was the first denial to be appealed. And it was the first appeal to be won.

When Teddy got BadgerCare, Wisconsin's Medicaid program, approval for therapy got more complicated. Now both our primary insurance and secondary Medicaid must approve the therapy. Teddy gets the lesser amount of therapy approved. If primary approves 5 visits and Medicaid approves 3, Teddy gets 3 visits.

Apparently, Teddy starting school makes things even more complicated. He gets OT, PT and speech therapy in school, but I was told he could continue to receive outpatient therapy as long as he is working toward different goals in both settings. That seemed simple enough considering there's plenty of opportunity for Teddy to learn and develop, right? Apparently not because that gives insurance yet another reason to question and possibly deny his therapy.

Teddy's last speech visit was September 16 when his authorization expired. His therapist had everything set to go and submitted right away. Now, nearly two months later, he's approved for speech therapy. He gets a whopping 3 visits between now and mid-February.

Yes, after 2 months of waiting, he gets to see his speech therapist three times in three months. Then we'll go through this whole process all over again.

I'm not sure the point of this post other than to express my frustration with the medical system. Taking Teddy to multiple therapy sessions is not one of my hobbies, believe it or not. However, I recognize his therapists are educated professionals who are experts in their respective areas, and I am not. They have different ideas, techniques and approaches. Their assistance has helped Teddy make tremendous progress.

Good thing both OT and PT authorizations expire this month. I mean, who really wants to be approved for therapy during the holiday months?

We Have a Herd of Reindeer

Last month, I somehow managed to order two sets of rain boots from Amazon instead of one. Woops. Then, we magically had an Amazon order show up that I couldn't really remember ordering. (Dave said he was going to take advantage of that magic order by putting a new camera in the cart that magically orders itself.)

So imagine my panic when 10 inflatable bouncy reindeer arrive at my door, instead of a lone reindeer. I had ordered one reindeer for Teddy as a Christmas present ... not an entire herd! At least that's what I thought. As quickly as my children would allow, I was digging through my past orders on Amazon to make sure I hadn't somehow managed to order 10 instead of 1 ... sneaky extra 0.

Thankfully, I had ordered and paid for one. After contacting the company that we received one box of ungulates instead of one, we were told the herd was ours. (OK, they actually said to donate them to a charity of our choice, which is where most of them will go.)

I think Teddy will enjoy his reindeer, and it's a perfect way for him to work his core muscles, which still need a lot of work. Sitting on this forces him to balance, much like many of the exercises he doesn't enjoy in PT. In fact, I'm thinking one of our herd will be donated to the place where he goes for therapy, so other children can have more fun than doing sit-ups.

Aside from horns to hold onto, this also attracts the AJ brother to play with him. These are not intended for multiple riders, but I do know from personal experience with a green cow version that my two children will cram on one critter. It's sort of like bull riding rodeo-style. Ain't nobody going to last 8 seconds.

Birth to Three

Before Teddy turned one, we were referred to our county's Birth to Three program, which is the early intervention program in Wisconsin. I distinctly recall the first assessment where Teddy was his happy Teddy self to be assessed by three pretty ladies but supported himself similar to Jello without a mold. We were happy to have some supports in place for Teddy and to receive direction on how to best help him, but we were also nervous because this was our first foray into any type of supports beyond medical visits.

For me, it served as a reality check that my child qualified for supports. (Let's just say he didn't barely squeak through the screening requirements ... there was no doubt he qualified.) It was hard to read the first reports that showed how significant his delays were in each and every area, barely registering at all on at least one of the scales. As heartbreaking as those reports were, we were also excited to see what Birth to Three would do for Teddy.

As it turns out, Birth to Three became perhaps one of my favorite therapy visits, if for no other reason than these appointments were the easiest. Teddy's team came to our house. At first, I worried about having a clean house and eventually settled on a house with the toys mostly picked up in the room where we'd play ... most of the time ... then some of the time. These appointments carried the least amount of stress because the team always asked if there was anything else we needed and often pointed us to resources we didn't know existed.

My absolute favorite part, though, was how excited they were for each and every one of Teddy's accomplishments. It felt like his outpatient therapists were pleased when he hit a goal but immediately set a new one. I understand that's what funding requires, but I just wanted to enjoy the moment. Birth to Three was where it was pure celebration for that day instead of "Here's his next goal."

When I look back at his first Individual Family Support Plan, I read his first goals we set for him: to support himself while hiking in a backback carrier, highchair or sled with AJ's assistance. Teddy got himself into a sitting position independently the first time on his first birthday, and how far he's come since then. I remember him slumping to the side in his highchair and re-positioning him multiple times each meal to an upright position. Now, this same little boy is walking nearly across a room by himself.

When Teddy's Birth to Three team asked if we had any questions on his last meeting before his birthday, my reply was, "Can't we pretend he's not turning three?" They laughed, but we all felt the same way. They've been some of Teddy's biggest supporters, but in a month he's off to school to see what other amazing things he can do.

Clifford and Curious George

On any given week, we head about 25 minutes away for three different therapy session: OT, PT and speech. Sometimes it's three separate days and trips. Other times we pull a doubleheader. Sometimes those go fine, and sometimes Teddy is ready to be done before we're halfway through.

Given how I never know how therapy will go, I appreciate any little thing that makes the appointments smoother. Last week Clifford was at the clinic, as part of a sponsorship with the local minor league baseball team and PBS. AJ was beyond excited to see Clifford, and I was pleasantly surprised by how tolerant Teddy was of the big red dog. Given his distaste for Santa and the Easter Bunny, I didn't think he'd have much to do with him. After his initial skepticism, Teddy was cool with Clifford and even managed a photo next to him. AJ thought it was so cool that we rode the elevator up with Clifford and got to be the last kiddos to say goodbye to him and get all sorts of stickers, books and special attention.

AJ, Teddy & Miss Pam with Clifford!

This past week, Curious George made an appearance at the clinic. Teddy immediately was intrigued (and not terrified). He smiled and engaged with Curious George enough to give him a Teddy version of a high five, which then led to Teddy grabbing his fuzzy paw. We didn't have much time to hang out with him before we headed back to therapy. Teddy managed to do some activities really well, such as practicing eating with a spoon, but then he hit the point where he was just done ... even though we weren't done.

That's when there was a knock on the door, and someone asked if Curious George could come in for a visit. Teddy went from crabby to smiling in an instant. He again gave Curious George a high five, grabbed his monkey paw and even did OK with a small monkey hug. Teddy broke down when I made the mistake of trying to set him on Curious George's lap for a picture, but he calmed back down when he was not being handed to a monkey. (Sheesh, why would that freak anyone out?) The mischievous monkey left my boys a wooden puzzle as a parting gift and went on his merry way. We managed to finish a few more activities after that welcome distraction.

"I like his fuzzy hand ... Can I eat it?"

I'm so thankful for these type of opportunities. They become the highlight of the day for AJ, break up the routine for Teddy and make my days just a bit easier ... and more fun.

Just monkeying around with the boys!