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!

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.

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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Healthy living

I’m 3 weeks into this healthy eating thing and I feel fantastic… no really I swear, I do. I’m sleeping like I haven’t slept in 8 years. Instead of getting up three or four times and night and tossing and turning, I get up once a night to use the bathroom (thank you kids for giving me “the mom bladder”) and then go right back to sleep. It’s incredible. I’m feeling better in my own body and I’m owning up to the mistakes I made with eating and exercise in the past.

What mistakes did I make exactly? I would workout like a boss then come home and eat a sleeve of girl scout cookies (hello, I live with a dealer!) What point was the workout when eating like that? Well the point was that it gave me about an hour and a half of kid free, me time. Was it worth it? Hell to the yes!  It was for my sanity but it also wasn’t helping my waistline or the way I felt overall. I was still sluggish and tired and sleeping like crap.

What am I doing differently at the gym? Well I’m still working out like a boss. I’m paying attention to how my body feels and listening more to those cues. You know when you work with a trainer to push you to lift heavier or they give you the motivation for just one more? I’m able to push myself a little harder and a little further now. I still work with a trainer about once every month or so to be sure I’m mixing up what I’m doing and that I’m targeting all of my muscle groups. She gives me a plan and then I follow that plan until we meet again to mix things up. When my knees start aching on the stairclimber, I switch up my cardio. If my feet are killing from my plantar fasciitis, I try the bike. Yes, when you pay attention, your body guides you in what’s best that day. I still push myself, I still get a good workout but I’m really listening to what my body needs in that moment.

How’s the eating thing? No I’m not eating sticks and twigs. I’m actually full almost all of the time. I’m eating on a schedule and set amounts with the help of a coach. She’s helping me kill my nutrition goals. I haven’t weighed or measured since I started three weeks ago so today’s the day. I allowed her to tell me when to weigh and measure, so instead of just following the scale, I can feel the difference in my body. I’m excited to see if the measurements or scale show a change… I feel like they both will! I’m figuring out how to prepare things in a healthy manner so that they taste good and make me feel satisfied. The unreal thing? I don’t really have a craving for the sweets that I so loved before.

My self-control has been really good too. Why? I think because I was truly ready for a change. I was sick and tired of feeling sick and tired. There were donuts in the conference room at work the other day and though I cursed under my breath (who doesn’t love donuts?!), I didn’t eat one. There were cookies at the meeting yesterday and I chose carrots. Why? Because again, the craving for that sweet stuff isn’t really there.

How has having a coach helped? Honestly, I needed that accountability. I knew I had to send her pictures of my food or a food journal. I didn’t want to disappoint her and I knew she was working hard to keep me on track. For me, having someone coach me with the nutrition piece has been essential. Even sending a quick text of “can I eat this?” has helped me understand reading labels better (though most of my food doesn’t have labels now!). She’s also helped me understand why my body needs certain foods and how they affect how I feel.

What keeps you motivated? Any specific foods that you love? Has someone been your motivation or inspiration? I’m curious what others are doing and what keeps you focused! Share away, remember we are all in this together, having support is key!