On Friday I received a call that there was a space available at our school district’s special needs preschool for Tate to attend as a peer model. When I’d put him on the waiting list, I also scheduled to have him evaluated to see if he qualified as special needs, just in case he wasn’t able to attend as a peer. I asked them to do the evaluation with Tate wearing his prosthesis, as I knew he wouldn’t qualify without it - he’s just too able.
Even though we knew he had a spot in the school, we went ahead with the evaluation, since qualifying as special needs would mean he could attend the school for free.
The strange thing was, I was battling a lot of anxiety about sending him to this school, but couldn’t figure out why. His two best friends go there, carpooling will be much easier, it’s half the cost of a regular preschool, and there are OT people on staff who could easily help him overcome any challenges that might pop up in this last year before kindergarten. Seemed like a no-brainer, but why was I feeling so anxious?
I talked through this with a couple of friends, and they helped me come to the realization that I was battling some emotions with regard to thinking about Tate as special needs, because although in a very real sense it is a fact, but it is not how I see him day to day.
This was proven true this afternoon when the school called to let me know that despite including a more difficult test AND using his prosthesis, Tate still scored well within the normal range and did not qualify as special needs.
A few hours later I realized that the anxiety I’d had about sending him there had disappeared.
I guess I really didn’t like the idea of sending him to school as a special needs student when he’d attended a regular preschool last year and had absolutely zero struggles or challenges. And even though HE and most others would never have known the difference, I would have.
So now I’m excited that Tate will be attending a school for kids with special needs as a peer model. I mean, that’s just cool. :)
Today was Tate’s second session of OT. Our time with Tate’s therapist is interesting, because we’re taking a very laid back approach, which seems to be working well so far. Tate hasn’t really been choosing to use his robot hand at home, so during therapy we’re trying to come up with activities that will help him see the kinds of ways he can use his new arm to help him.
He’s far more compliant at therapy that he would be at home, and since I don’t want to cause a negative association with his arm, I’m letting him take the lead on deciding when he wants to wear it. Hopefully, as he begins to see that it can be a useful tool, we can introduce incentives for wearing it for short periods of time at home.
When I say we’re being laid back, we really are flying by the seat of our pants. Today we went into a toy closet in the therapy offices and just started pulling things off the shelves. When we went into the therapy room, I spied a toy that we have that he’s always wanted to play with but couldn’t work well with his little arm. So he and Jim started playing with it and he was really thrilled to be able to play with this toy that had always eluded his ability.
This was a mini version of a Zoom Ball. I need to try and track one down, because it’s smaller than the one we have and was just perfect for Tate!
Another thing therapist Jim helped him discover was holding the back cover of a book with this helper hand and turning the pages with his regular hand. Of course, he can turn pages with this little arm, but if he does end up wearing his arm at school this will be a really practical way he can make use of it.
Overall, he seems to enjoy his therapy sessions, and it’s fun to discover new ways he can use his helper hand.
Next week we will be having Tate evaluated for State disability services, so that he can attend our district’s preschool with state funding. Last year he was evaluated and did not qualify for services (which was actually great news). This year, though, with the introduction of the prosthesis, I think it could be helpful. They have agreed to do his test while wearing his prosthesis and to be sure to include lots of bilateral activities.
Getting him in this preschool would put him in an environment where they have OT people on staff who can help him if he has any issues at all. It would also mean school would be free (bonus!), and that he’d be at the same school with his 2 best friends (who attend as peer models).
I’m so torn on this. I know that this is probably the best thing I can do to advocate for Tate’s needs and to be sure that we are covering all of our bases. At the same time, I’m struggling emotionally a little bit with the idea of considering him “disabled” in any way because I’m so proud of how incredibly capable he is. It’s a weird situation, to be sure.
Last Wednesday, I came across a Facebook Event page for the Midwest Helping Hands Picnic. I have heard of the Helping Hands Foundation, but never registered membership with them, so hadn’t realized there was a new group nearby! It hasn’t really been until the last year or so that I’ve found reason to get involved with these kind of groups, but now that Tate is becoming more aware of himself and his difference, I want to be sure and expose him to other kids who have similar differences.
Thankfully, I came across the event just in time, as it was happening this past Saturday in Cincinnati. Scott had a long, rough week at work, so he wasn’t feeling up for the trip, so I piled myself and the boys in the car and made the 2 hour drive to the picnic.
It was the first time Tate had ever seen other children with limb differences. There were about 20 families in attendance, each with a child who had a “lucky fin”. Most of the children had part of their hand and/or finger nubbins, but there were a few like Tate who were missing hands or part of their arm, all the way up to above the elbow.
Tate is a bit shy in new situations, so I didn’t push introducing him to any of the other kids, I just let him and Fisher run off to play some of the organized games while the adults gathered at the shelter to talk and share stories. He didn’t have a whole lot to say about it, but he did say he was happy that we went and that he would like to come back next year.
Fisher and Tate (on the right) playing the Egg Race! Thanks to Kim for the photo!)
We also got to meet Molly Stapleman of the Lucky Fin Project, and buy some great bracelets and stickers. I can’t wait to put this one on my car! :)
All in all it was a great day, and I’m so glad to have gotten connected to some other families nearby. Can’t wait until next year!
Tate has had his “robot hand” for about 2 weeks now, and for the most part it now sits unused unless we are seeing someone new that he wants to show off for. He wore it non-stop for a few days, but then the novelty wore off and I saw him getting frustrated because it actually made things harder overall (as expected).
I’m not pushing it at this point, because there’s no reason he HAS to wear it. I don’t want it to become something we argue over, because as far as I’m concerned it’s his choice whether or not he wants to use it.
At the same time, he’s not going to get any better or more proficient with it unless he wears it regularly.
We got started with OT this week through Children’s Hospital, and I was discussing all of this with his therapist, and what approach we were going to take. At the very least, he will be wearing it for an hour a week and using it very heavily during that time.
(Quick aside - it’s been very interesting throughout this process to really grasp how rare an upper extremity limb difference is, as the prosthetist told us how nice it was to work with a young patient, and our OT therapist said he was the only one on staff with any prosthetic training at all - and we’re his first prosthetic client!)
The other issue is preschool. Tate says he plans to wear it to school, which I suspected, because it’s clear that it’s preferable to him to have a robot hand to show off than a missing hand to explain. It occurred to me earlier this week that it might make sense to have him attend our school district’s preschool for kids with delays, as they have OT people on staff. (He was evaluated to attend last year and didn’t qualify for services. I could have had him attend as a peer model, but we ended up going with a closer preschool he could attend in the afternoon.)
So, I called today and asked if he should be re-evaluated while wearing his prosthetic, since that’s how he plans to attend school, and they weren’t sure. We’re waiting to hear back about that, but in the meantime I put him on the wait list for him to attend as a peer model. That way, even if he didn’t qualify as delayed, he would still be in an environment where they have staff equipped to help with any of his struggles.
Then again, he might wear it to school for a few days and then ditch it.
This is such an unusual issue to deal with, because he’s entirely functional and really needs no extra help or special attention when he doesn’t wear his arm, but if he wants to wear it he certainly has the right to get help with using it. In a way, though, it feels like we’re creating a disability where there isn’t one.
Also, I should point out that his two best friends attend this preschool as peer models. It is also an excellent school, and half the price of regular preschool (or free if he qualifies), so we there are other factors that make it an appealing choice.
So, yeah. If anyone out there has any insight into any of these issues I’d love to hear from you!
Well, after weeks of casting and fitting, today we took delivery of Tate’s new “robot hand”!
A huge thanks to David Kozersky of Capital Prosthetics and Orthotics Center for his meticulous attention to detail. We felt welcome and comfortable in their offices, and Dave helped make the experience fun each time we visited.
Here’s Tate trying on his new arm for the first time:
This arm is called a “body powered” prosthetic. Tate wears a lightweight harness that has a cable attached at the back. When he stretches his arm out, it opens the device on the end, and when he pulls back it closes. Very simple, yet highly functional. Despite the advancement of prosthetic devices, many people still use this kind of non-motorized device. He figured out how it worked immediately!
Shaking David’s hand to say Thanks!
Taking a sucker home to his brother…
This afternoon he went to play at his friend L’s house. She was jealous of Tate’s new robot hand, so her mom made one for her, too! AmFam says he did take it off in the 3 or so hours he was at her house. I’m thrilled that he’s taken to it so well!
Climbed up a tree after walking down the street to show it to our neighbors.
We’ll start OT next week so he can get a little help figuring out how to use it, though I imagine he won’t have much trouble figuring things out for himself!
He has another “hand” that looks a bit more like a hand, but that has less functionality. We haven’t tried that out yet, but we’ll show you soon! He’s just been giddy today, and it’s been really fun to see.
I haven’t posted recently, because there hasn’t been much to report. Tate was casted for his prosthetic, and we’ve had 2 socket fittings. The first one was too big, so they had to make another one. The terminal devices (it looks like we’ll be getting two - a hand that opens and closes, and a hook-type) have been ordered and we are now waiting for the call that Tate’s long-awaited robot hand is ready!
I am contemplating combining this blog with my regular blog, but I wonder how many readers might only be interested in the posts about Tate. Perhaps cross-posting would make more sense? It seems as though while technology seeks to improve efficiency, I am determined to complicate things regardless.
I hope my next post is about Tate’s new hand!
Last Thursday, Tate took a pretty hard fall at a local playground. I didn’t see it happen, but another mom did, and although he was being his usual tough-guy self, I could tell that he was hurting. I thought at first that maybe his shoulder was dislocated, so I was panicking a little.
Thankfully, our pediatrician just happens to live next door and just happened to be home. He gave Tate a pretty thorough exam in the driveway, and said he was pretty sure it was just muscular.
So he rested, and although he was moving around fine over the course of the next few days, he would sporadically hurt it again and indicate quite a bit of pain. I assumed he was just re-injuring the muscle/tendon and encouraged him to try and be careful with it.
Yesterday, though, I was at the zoo with Amber, and it happened again. He bumped into something and wailed and said his shoulder hurt. Amber thought he should probably have an x-ray, so I gave Dr. Brad a ring and he said that it was probably still just healing but that at x-ray was not a bad idea.
So I took him to Children’s Close to Home, where they forgot about us twice and I had to wait forever and the boys were being good but still annoying, and I was feeling impatient because I have a vacation to prepare for! But then they called us over to the phone to talk to Brad who informed us that, in fact, he has a fractured clavicle!
We now have to go BACK to urgent care this afternoon so that they can get him a sling, which should be really awesome because - did i mention we’re leaving on sunday for 5 days at the beach? ugh.
The good news this week is that Tate was casted for his prosthesis!
The day after we return from vacation, we’ll go back to get his test socket, which is made from clear plastic and will allow them to test out the fit and make adjustments as necessary. We will select a terminal device (the functional part, on the end) and then wait for the final product! Fisher was happy to be able to help with the casting.
We’ll tell you all about that when we get back!
Last night we went over to our next door neighbors’ house for a little party they were having to celebrate the start of summer break. I was sitting out on the driveway chatting, and there was a woman there who I’d never met, and whose son is the friend of our neighbors’ 5th grader.
After chatting for about 10 minutes with some other friends and neighbors, I started to introduce myself to this woman I’d not yet met, when I looked down and discovered that she was missing a hand - just like Tate! For a few seconds I was stunned and thought maybe I was hallucinating…as you probably know, it is pretty unusual to see someone with a limb difference - much less one nearly identical to Tate’s!
Tate was standing with me and I looked at her and said, “Oh my goodness! Tate, look! She has a little arm just like you!”. She looked over and smiled sweetly and said, “Yep, I was born this way!”.
Well, I was just nearly stunned for a moment. I could tell that Tate thought it was really neat, but he was being shy and pretending he wasn’t interested. But she and I talked for 15 or 20 minutes. She lives in the neighborhood and our kids are at the same school! I’m really surprised I haven’t seen her before - this is a fairly small community and you tend to run into the same people over and over again.
She was very open to talking about being one-handed, her experience with prosthetics (she doesn’t use one, but did when she was young). At the end of our conversation she offered to give me her phone number so that we could keep in touch and I could call her if I had any questions or wanted to run anything by her.
I can’t begin to tell you how grateful I am to have met her, and how fun it was to see an adult with the same limb difference as Tate! She has the potential to be a wonderful local resource. Now I just need to grill my neighbors about why they never mentioned her to me before!!
Last night as I was talking with a couple of friends about possible design features of a device that would help Tate do the monkey bars, I was struck with inspiration…
He’s actually still a little young to go from bar to bar, and what he’d really like to be able to do NOW is get a good swing going on a single bar like his friend L. So, I went to Lowe’s and found some playground rings, attached one to the bar for him to loop his little arm around, and he was able to get his swing on!
It took him a bit of time to figure out how to get up on the bar without help, but he did it!
he was one very happy boy. :)
As a bonus, I have to share the creative way Tate found to eat his push-up today. Sometimes it’s pretty cool to be one-handed! :)
We made the first step toward getting Tate’s “robot hand” with a visit to the Children’s Hospital Orthopedic Clinic last Thursday. He was visited first by a resident (who happened to live on our street!) and then by the Doctor, who was extremely helpful and really helped clarify the process for us.
First of all, the bad news. As I suspected, Tate won’t be able to use his new arm to climb the monkey bars. I suspected this, but it was the MAIN reason Tate had been asking for a robot hand, and I didn’t want to discourage him. But the doctor explained that it would pull it right off! Since the visit, we’ve been talking about all the fun things he WILL be able to do with it, so he seems perfectly ok with this news.
Now, on to the good stuff. The doc says he is an ideal candidate for a body powered prosthetic, because he has so much length and therefore, leverage, in his forearm. Also, this doctor happens to be on the board of the local Shriner’s organization. He laid out the process for us as follows:
1.) We fill out an application for Tate to be accepted as a patient of the local Shriner’s organization. Dr. Kean will present his case for approval at the next meeting.
2.) We take his prescription to a local prosthetist, who will figure out what our insurance will (and more importantly, will not) cover.
3.) This information will again be presented to the Shriners, and based on their budget they will either a.) Pay part or all of what the insurance company won’t or b.) will pay for transportation and lodging for us to visit Shriner’s Hospital in Lexington where we can get a prosthetic at no cost to us.
4.) If the local Shriners do not cover the cost completely, we can then decide if we want to personally cover what the insurance company won’t in order to get the prosthetic locally, let Shriner’s take us to Lexington, or take ourselves to Lexington.
Obviously, it would be more convenient to get it locally, since he will need new devices and adjustments as he grows. But if it’s going to cost us more than $1k out of pocket, we’ll happily get ourselves down to Kentucky and take advantage of the Shriners’ generous work. It’s only about 3 hours, so not terrible.
Our appointment with the local prosthetist is in 2 weeks. We’ll keep you posted!