What's actually in the 504?

I shared the meeting process in a previous post but I didn't share what's in her actual 504. Today, I'll share what adaptations we make for school and what we have written in her 504. I'm doing this in hopes that it will help someone who is the parent of a child with a limb difference. I'm also sharing this so others know the things that help Bella be more successful in the school system.

Super simple change #1- put paper towels in a drawer near the sink in the classroom. While this may seem like a small thing, her teacher last year did it for the first time. Bella found it super kind that her teacher did that AND it was helpful because the paper towels didn't shred every time she tried to pull one from the dispenser. You know those dispensers that show a picture of both hands, try using one hand next time. They tear into small pieces or shred all together. Small changes= big difference!

A big focus is physical education and safety. We have it written in our plan to "consult between parent, PE teacher, and district PT quarterly to review unit activities and adapt if necessary". Bella's PE teacher and I have really great communication and this has helped. We actually met last week which was really helpful for talking about what units are coming up and our plan. We had a solid plan in place prior to the 504 meeting which is one reason we breezed through the official 504 meeting.

Bella and her PE teacher for pre-teaching outside of the classroom. This occurred last year and according to her PE teacher a really great boost in her self-confidence. Once the skill came up during the class, Bella and her PE teacher already had their plan in place for adaptations if necessary. This allowed her to walk into PE and start the skill right away. This allows her to feel comfortable and also helps that it doesn't take time away from the actual activity during PE.

Safety during PE is essential, especially when it comes to weight bearing on her upper extremities (arms). When a person is missing fingers, their balance and stability is compromised. Her prosthetic has really leveled the playing field. It allows her balance and stability and allows her to safely weight bear on her arms and hands. That alone is worth the cost in my eyes! When Bella does strength or balancing activities in PE, I've asked for her to be closer to the teacher so she can be more closely observed. This is written in her 504.

Another "little thing" that we do is photo copy longer math work or class notes to reduce writing fatigue. In fourth grade in our district, kids are assigned an I-pad through school. This is really helpful because now Bella can take a photo (suggested by the principal- which I think is a great idea!) so that she can have the information for later. You can also edit the photos so she could "write" on the screen. Anything we can do to help decrease the workload of that right hand, we will!

She also has the option to use technology resources for assignments, such as Voice to text, read write, word prediction and see saw. That's written exactly in her 504 plan. I wanted her to be able to voice to text for longer assignments, again to reduce workload on her right hand. Sometimes, I will transcribe her answers or write things when we are home in order to decrease the workload. If she has a paragraph to write, she will tell me what to write and I write her words exactly.

The last thing is allowing her extra time for self help and daily living activities. Buttons, zippers, shoe tying are usually a non-issue at this point, however sometimes it does take her a little longer. I'm not talking 10 minutes longer, just a minute or two. The transition from lunch to recess when you have to change to winter gear can be problematic. We are still working on a glove that will work to keep her left hand warm and allow her to still be independent.

This year, we'll face recorders in music. Lord help me... kidding, kind of! Anyhow, we'll have to figure out what works for that!

504 meeting

Part of our 504 plan is to meet with Physical Education teacher quarterly. We recently met for fourth grade first quarter. This part of our 504 is really important since there are modifications that need to be made or changes that need to occur to keep Bella safe and to ensure she is able to participate.

Her PE teacher is awesome. She's constantly brainstorming ways to help Bella. She came up with some time outside of PE to trial a new skill that might present challenges. Bella never really mentioned it to me outside of our initially 504 meeting last year. Her teacher would say that it was working out well and that it was useful.

When we met, I figured out just how useful that time was for both of them. They could talk then make changes or brainstorm together. Hearing straight from the teacher how it worked for them was great. It made me realize just how hard she is working on Bella's behalf. I could tell that she had already thought about some ways to help her for this coming year.

We talked about her current prosthetic and the fit. This could present some challenges for weight bearing on her hands at the start of this year. She suggested manipulating the scheduling of testing off for Bella so that she could be successful in the skills. This may mean that we have to wait for her new prosthetic for her test off. One example is push-ups. She can't really weight bear safely on her left "hand" for push ups. The prosthetic ensures that the wrist on her left hand is safe, it also ensures that she has a stable surface. The "mushroom" attachment provides the stable surface. For you or I, we have two hands with fingers to keep us stable.

We talked a lot about how Bella had changed last year. Her teacher felt her prosthetic made a big difference in her mindset. She worked hard to figure out a way to make things work. She was quick to put on her prosthetic at appropriate times, sometimes she would have a friend help. She talked about the skills that she utilized the prosthetic for. From hockey, to jump rope, the tumbling... the list is extensive. It allowed her to have the same opportunities as her peers! It's all about leveling the playing field and making things EQUAL.

She will never have two typical functioning hands. For us and for her, she shouldn't be excluded due to her limb difference. She should be able to do all of the things the other kids are doing, limb difference or not! She ties her shoes, fixes her own ponytails and does so many things in a way that's different from me but it works for HER. My job as her mama is to advocate for her to ensure that she is getting those equal opportunities. I'm happy to report that her PE teacher is also ensuring that she has equal opportunities as well.

My eyes welled up with tears when she talked about the difference she has seen in Bella since she got her prosthetic. Does she use it every day for every task? No... it's really task specific. You can't use the mushroom attachment for holding pencils. It's specific to upper extremity weight bearing exercises. You can't use the other attachment for much that we've found. We've used it for bikes but it pinches her inner elbow. We've used cord keepers and that attachment for hockey, jump rope and a few other things.

(She has the one on the far left of the photo)

If you don't have a 504 for your limb difference child, I would recommend looking into one. It just puts some things into place that might help you keep your child safe and functioning at their full ability. We have her FULL 504 meeting in a little over a week. I'll update as we have the full plan in place in hopes that it can help another family. 

Our first meeting post 504

The PE teacher reached out to me for a meeting related to Bella's 504 plan. I met with two of the PE teachers to discuss fitness testing that would be coming up and football. Okay, head injury central! Hopefully she doesn't like football :) That's the nurse mom in me talking. Back to the story, so we set up a before school meeting to talk about their ideas.

When we met, they were prepared with the items that would be used for fitness testing and what they thought Bella would need. They didn't forsee any concerns or issues with her doing well, but they wanted to be sure that they were doing what was best for her. I'm glad that they were really putting some thought into her limb difference and what that meant in PE for her.

Needless to say, we both agreed that she should wear her prosthetic for any weight bearing activities on her upper limbs. Push ups was one of the things on the fitness testing. The prosthetic allows her to keep her wrist joint safe. I fear that while she could do the pushup without it, it could cause injury to her wrist joint. She does have movement in her left wrist and we need to continue to protect that. The other item was curl ups (like sit ups but coming up farther). They showed me what Bella would need to do in order to be successful. We agreed that wearing the prosthetic would put some weight on her left side to keep her spine straight during the curl up.

It was a short, sweet meeting. In and out in about 30 minutes. Those are my perfect meetings, a good agenda that is stuck to and people who are focused!

I must say, while I was excited about the meeting, it bummed me out a little that we had to have a 504 in place for more action to be taken. This is precisely why I advocated for Bella to have a 504. Having it in writing somehow makes it happen, at least for us. Does everyone with a limb difference need a 504? No... I mean it's taken us until 3rd grade to "need" one... though in the back of my mind, I can't help but wonder if having one last year would have protected her from her neck/head injury.

504 complete!

Just like that our 504 is complete! It was way more painless than it was initially made out to be. I think because I reminded the school that I have the ability to be at school for 3 days a week until the 504 took effect. That might have helped... maybe not... but it sure seemed like it was quick.

Our 504 is very basic at this point. My goals were to keep her safe and to keep her RIGHT hand protected. It is the hand that she will use for 100% of things throughout life, so minimizing discomfort or distress on her right hand is essential. So here are some of the keys of our "accommodations" so far:

• Consultation between the PE teacher, the district PT and myself quarterly (this allows us all to think of body mechanics, safety and ideas to help her)
• Allow an opportunity of pre-teaching of PE if she were to need something different (meaning she could try the adaptations without the stress of her peers observing for the first time)
• Close proximity to PE teacher during activities that require strength and balance of upper extremities (this helps keep her safe and helps the teacher be more aware of her)
• Option of technology (there are tons of options for voice to text, word prediction, see saw, etc that will help her when it comes to writing for lengths of time)
• Copies of board work (so when a teacher writes a math problem on the board, instead of Bella having to write it then do the problem, she will be given a photo copy of the board work, so less writing for her)
• Allow more time for activities of daily living (buttoning, zippering, changing to outdoor gear in the winter) 

Understand that a 504 is protected through FERPA so her school can't go talking to anyone about this. Why am I sharing it here? Because when I was trying to find out info as a mom of a child with a limb difference, my search came up pretty empty. It was frustrating. I want other parents to not have the frustrations that I felt.

Don't these seem basic? To me, yes, but to others, not so much. All of these things come back to safety and limiting fatigue on her right hand. After talking to our friends at Camp No Limits this passed summer, we realized that we could do more to help Bella be successful in school and not have struggles. I'm thankful for a certain mama for encouraging me and almost pushing me to help my child! It takes an army to raise kids and I'm happy to have so many friends helping!

I actually have a meeting with her PE teachers tomorrow morning to discuss football. Her PE teacher requested that I meet with them so we could do some brainstorming together. Love this collaboration! I think it helps us all be on board for getting Bella what she needs to be successful and not have struggles due to her limb difference.

Is this all inclusive? No. As the years progress, her needs will change. We'll meet yearly to discuss her previous 504 and make changes. I can also request to meet to make changes sooner if needed. Likewise, her school/teachers could ask to meet with me for changes. This helps to be sure we are all on the same page for Bella. We will all learn as we go!

Successful 504 meeting

Last week, we had the official 504 meeting. It happened at 7:30 am on a school day. This made it easier for all the parties involved to be there at the meeting. I sent over my schedule openings and then they worked with that. Thankfully my schedule was pretty flexible last week.

Here's who was involved:
Occupational Therapist from the school district (OT)
The school principal
Bella's classroom teacher
Me
The district nurse (there's ONE nurse for the entire district)
The school psychologist (apparently she's in charge of the 504's for our school)
Physical therapist from the school district (PT)
One of the physical education teacher's from her school (there's two)

Who knew so many people were involved? Not me. That said, it was a productive meeting and all parties were highly valuable for our situation. I'll give you the run down of the roles every one played so that if someone else is ever in our situation, hopefully they can understand it better.

The OT had called me earlier in the week to discuss my concerns. She also had observed Bella in the classroom prior to calling. I didn't know she was observing. Turns out Bella also didn't realize she was observing. She was pretty discrete about the whole thing it sounds like from Bella's standpoint and hers.

The school principal weighed in occasionally about what needed to be actually written in the plan and gave her thoughts on the plan as we went along.

Bella's classroom teacher explained what she had already seen and done as well as her plans for the year. You know those stubborn paper towel holders that need "two hands" to get the towel to come out. She put a stack of paper towels in a drawer below the sink for Bella. I love that she thought of that! She said other kids are welcome to use them too but it's there so she doesn't have to mess with it. What a thoughtful thing! She talked about technology moving forward. She discussed how the kids usually write the math problem that she writes then solve it. For Bella, she's going to photocopy the page (no copy right laws are effected) and then Bella can write the answer. For long writing, they can have her do talk to text... there were tons of plans she had! I was impressed with her forward thinking. Loved it!

The district nurse explained verbiage for the 504 to be effective. She helped to think of when to call me and how to notify me of problems as well.

The school psychologist read the words from the 504 legal page as well as noted our plans. She has to be sure Bella "qualifies"... to me that was a joke but whatever I get it. It's a process that must be followed to a T for it to be effective and be a proper legal document. She also helped keep us on track.

The physical therapist mostly just listened. He'll weigh in more when PE comes into play if we meet challenges. I'm happy he's involved so that he's aware of Bella and the fact that she may have some needs.

The PE teacher discussed the curriculum for the year. She talked about things that she's been thinking about, like hockey, pickle ball, gymnastics. She asked questions about her "sports arm" prosthetic and when and how to use it. I walked her through the process but Bella does most of it on her own. We talked about how once we meet some of those more challenging skills in PE that we as adults will come to a decision on having her utilize her prosthetic. Though I want her to be involved, there are some times adults just have to make the decision to keep her safe, physically, mentally and emotionally. We'll work with her too when it comes to that. Her PE teacher and the physical therapist talked about having her have the option to try some of those skills without her skills, like practicing holding a hockey stick before she's charged to do it in front of her class. I thought that was a great idea.

The meeting stayed on track and lasted 55 minutes. In my opinion, it was very effective. We are currently waiting to see the "finalized" 504 plan. I have no doubts that it will not be a problem.

Navigating the 504

Apparently creating a 504 is easy for some and more difficult for others.

We were initially told by our principal that a health plan would be a better option for Bella. I trusted her and agreed. Then, after doing my own research, and a lot of it, I disagreed. A 504 would legally protect her and give something in firm writing that would help us to help her.

We were told that "if she qualifies"... I'm not sure how she wouldn't "qualify". If you read the legal language, she "qualifies"... Here is what I sent over to her school: According to the Dept. of Education website, the exact wording is "cosmetic disfigurement, or anatomical loss affecting one or more of the following body systems: neurological; musculoskeletal..."

She was born with a congenital limb difference, which is an anatomical loss affecting her musculoskeletal system. This is documented on my prenatal record, her health care record, as well as easily visible to all.

I'm thankful for the Lucky Fin Project, Born Just Right, and Camp No Limits. Those places are primary places of support for our family in times like this. The people that are part of those sites bend over backwards to help, give advice, give guidance and support. It's essential when navigating things like this. As an "experienced" mom of a child with a limb difference, I'm still learning.

Why am I sharing this with you? Because this is already a trying process. It's taken a lot of effort and energy on my part. I'm working hard to make this happen for Bella. We need to have some things in place to help her continue to be successful in school, without injury and without overusing her right hand. Remember, that if your child has ONE hand, that hand does 100% of the work, 100% of the time.

I'm not saying your child needs a 504 just because they have a limb difference. I'm saying that my child does. She had a neck injury last year at school that could have been prevented. She also has complained over some soreness in her right hand, palm and fingers. I want to be sure I'm doing what's best for you. She's almost in third grade and so far, we've made no adaptations in school for her. This year, there will be some changes. This year, we have thought about some adaptations that will keep her safer and also keep her right hand in good order so that she doesn't cause injury at a young age. Any pressure we can take off of her right hand, we will. Talk to text is something our school utilizes currently so I'm hoping that she will be using it more so save her hand. That's something that can be "built" into our 504.

I want to do anything I can to help our community as well. Our official referral was sent over and now we are waiting once again. I'll keep you posted on the process as I find things out. If you have any questions, comments or advice, feel free to share! I've had a hard time finding 504 information for kids with limb differences. Most of the information that I search is popping up with kids that have ADHD.

Shriner's update

Last Friday, was our Shriner's appointment. Our drive down is a little under 2 hours and we forgot Bella's kindle. Let me tell you she was thrilled about that (insert eye roll here!). However, it was a really good opportunity for her and I to chat about some things that are going on in her little 7 year old life. A good chance for mama and Bella bonding.

We made it to Shriner's and then checked out inside the hospital a bit. We did some reading, played with a little 16 month old guy who was also waiting, fishtailed braided Bella's hair and did some more chatting. We got called back and met with Dr Ackerman, Michael (from scheck & siress prosthetics) and a resident. Dr Ackerman agreed with me that a sports arm with a terminal device would be a good fit for Bella at this point in time. Did I lose you yet? The terminal device is the part of the prosthetic that goes on her left arm and then the "hand" portion is interchangeable... Why go this route? Because this will allow her a mushroom tip (which is used for gymnastics, handstands and cartwheels) and a bike piece (that can clip onto her bike but releases easy, this could then be adapted for tennis, baseball bat, hockey, kayaking)... It gives her some options.

Why not a full prosthetic that she can wear all of the time? I want her to have a purpose, right now she does most things just fine. After her neck injury in PE is when I decided that she should probably have something to help prevent further injuries, to her neck, her wrist, her elbow or other injuries that could occur due to her limb difference and the length difference in her arms. IF later she decides that something would be beneficial ALL of the time, then we'll go that route. However, for now, this is a start.

Why Scheck and Siress? Shriner's in Chicago sends out their prosthetic needs to this company... Why? I'm not sure. What I am sure of is that they have great communication with Dr Ackerman which will help to get our insurance on board. This is one of the main problems we have in Milwaukee. Our pediatrician isn't well versed in prosthetic or limb differences and our needs, which means she would have to communicate better with Hanger. Hanger can't call and talk to her because then insurance would deny our claim because "they are trying to sell her something"... their words, not mine. That's one of the main reasons we went to Chicago, to get a hold of experts. Dr Ackerman is just that, an expert in amputations, limb differences and the needs related to such.

What about the cost? Before I get into this, I'm going to get on my soap box. Here goes. Why is it that someone with TWO hands gets to sit behind a desk and decide what MY daughter NEEDS and if it is appropriate or not? Why is it that this person gets to decide if it's a NEED or a WANT? Why should Bella have a harder time doing handstands or cartwheels because she was born different? We risk injury to her good limb from all of the extra stress that she places on that hand and those joints. The person behind the desk surely is considering all of those things right? Wrong...

Okay back to the cost. I stood at Shriner's and called to be sure Scheck and Siress was "in-network". It took me about 30 minutes to verify that is was and then we headed from Shriner's to their office. We have decent insurance. We've almost met our deductible. Once that is meant, we pay 10% and the insurance company pays 90%. This isn't too bad. The problem comes into place when the policy says the prosthetic can be replaced every 3 years, so then that means we'd  have to fight with insurance because she's a child and she's growing constantly so she will likely need something before the 3 years is up.

Why did I share the cost? I feel like it's important for other parents of kids with limb differences to realize there is a a cost, a significant one. We'll likely have to travel to Chicago 2-3 more times for appointments, that's time off of work and school as well as gas and wear and tear on my vehicle. The cost of the prosthetic as well and the things that go along with it are not cheap. The sleeve alone for the inside of the prosthetic (this helps decrease rubbing and ensure a good fit) is $500. Again, these are things that I as a parent of a child with a limb difference did not know or realize. As we move forward, these are things that we will keep in mind. Just some insight for those that are in our shoes.

I hope that this helps someone! I hope that you as a parent of a child with a limb difference can think about your child's needs as they arise and have some sort of understanding because of this blog. I hope those in the community can understand prosthetics a little better.

Denials

Our insurance hasn't been the best when it comes to getting Bella the things she needs. It feels like we are constantly jumping through hoops when we are trying to get things that we think she needs or benefits her. Currently we are STILL working with Hanger and her pediatrician about a prosthetic. 

Her pediatrician isn't well versed in limb differences which can make it slightly difficult to get the resources that we need. This means that I end up educating her pediatrician on the resources we need and then showing her why they would be beneficial. As everyone knows, those pediatrician appointments aren't that long and don't leave much time for discussion. Which isn't a big deal for most but when I need to do some education about resources and needs, this can create an issue. 

 Shriners is an amazing resource that we connected with years ago. At that time, we found out that there weren't really any immediate needs. Bella didn't want anything or find anything that she felt would be useful. Shriners was one of the most amazing hospitals I've ever encountered and that's saying a lot because I'm a nurse that traveled for some time! I opted to reach out to them again due to the issues we are currently having in PE class. We have an upcoming appointment at the end of this month. I was shocked that we could see a specialist so soon! Who's in the Chicago area? Message me if you are, maybe we could do a limb different meet up while we are there! 

Back to PE class, the teacher wants her to be independent and we do as well. Remember how I mentioned that we talked to our friend, Keegan. She had some amazing suggestions about how to help her be independent and be self sufficient without hurting herself. Again, people find those resources, use them! Keegan is an invaluable resource to us, both Bella and me as her mama. 

Stay tuned, until the end of the month!

Communication

A little over a week ago, Bella was doing some gymnastics during her PE time and hurt herself. She was doing a handstand and fell over as a result of her left hand slipping out from under her. We were not notified by school and Bella was in a fair amount of pain when I picked her up after school. She told me that her left hand slipped out from under her and she feel, injuring her neck. She said she told the gym teacher and was sent to the office for an ice pack. This mama bear was a little (ok a lot) heated that I didn't receive a phone call. I did a neuro assessment and checked did a solid head to toe assessment (thank goodness for 15 years of pediatric nursing experience)! I talked with her doctor and we agreed that bringing her in to the office in the morning was also a good idea.

On the way to the office that morning, I called her school. No one could tell me what happened just that she got an ice pack. Her PE teacher was in classes all day so that didn't help either. It's not that I didn't believe Bella, but I wanted to hear from someone that was with her what happened... specifically an adult. When the NP at the office asked what happened, Bella told them. When she asked me what I knew, I said just what Bella had told me because I hadn't heard from anyone at the school yet. Her eyes said it all... then her mouth "A neck injury and NO ONE called you? They should be glad she's not my kid"... in that moment, I bet the school was wishing she wasn't my kid either!

I emailed her gym teacher and waited for a response. We finally met yesterday. It did not go as planned. Initially the mama bear still had a fire under her butt (aka me!) and I was pretty sure that the gym teacher was going to go home and tell her husband about me using some choice words. Believe it or not, I kept my cool. Surprising, right?

We sat down in the lounge to talk. Turns out, Bella hadn't told the PE teacher what happened. The teacher had approached Bella because she seemed sad. Bella told her she fell but couldn't explain anything else. She sent her to the office to get an ice pack. We had a great chat about her concerns moving forward. She's never had a limb different student. The thing is, after talking to her, I know her wheels have been turning and she's been really thinking of ways to have Bella included and do everything she can while keeping her safe.

Am I saying I didn't or don't believe my child? No, not at all. I'm simply saying that there are two sides to every story. Yes I got fired up. Yes, I still think there should have been a phone call when she asked for an ice pack for her neck. It's a learning experience for EVERYONE involved. However, I went into the meeting hoping to be able to collaborate in order to benefit my child. Attacking anyone would not have been the answer and would not have allowed anyone to feel like they could come to me with an issue.

Bella made the decision to try the handstand and she didn't feel like stopping her. They have a list of activities they can try, including the crab walk, the bear crawl, the egg roll, the log roll... etc. Bella made the decision to try the handstand. Do I blame the gym teacher for not stopping her? No... why you wonder? I want Bella to do everything the other kids in her class do, I don't want to stop her or hold her back. If she wants to try, she should have that option. It's my job as her mother to keep her safe and lift her up, not break her down and discourage her.

The gym teacher had some excellent questions. Again, those wheels were turning! She wants to know how she can help Bella with jumping rope. She wants to have her be as independent as possible, which is always the goal for us too! She wants to know how much pressure is okay and how much pressure is too much on her left hand. I had suggestions for some things, which I'll share soon (so stay tuned) and other things I didn't. I commend her for really working to think of ways to help Bella. We both talked about how we don't know how to do things or how to help until the situation comes up. I'm not always forward thinking.

What did I do? I cam home and researched. I sent a text to our camp friend Keegan about joint pressure and asked her a boatload of questions. Can I tell you how mature Keegan is and what an incredible mentor she is for kids and parents alike? With Keegan's help, I have some ideas. I had some on my own as well. However reaching out to someone who lives with the difference is priceless, she has first hand knowledge about how I can help Bella.

Today, I'm planning to call Shriner's to reach out again. Our insurance is a pain and is not on the same page as I am with things. Shriner's is warm and welcoming and I'm sure they can help. They can also help us be an advocate to our insurance to find what fits Bella's needs best.
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