We are talking all about advocating for your special needs child. When we have a child with special needs, pretty quickly we realize that they require a lot more services than we can provide. One of the biggest things that we have struggled with and learned to overcome is being an advocate for Remy. I am so excited because I have my amazing, wonderful husband Zach joining me today on the podcast. Together we have been able to build an incredible team around Remy to give her all of the resources that she needs and we want to share how you can do that too!
How We Do It
It is going amazing right now with Remy. In the last 18 months to 2 years, Remy has made such huge strides. Zach and I can pump ourselves up and say we are great parents, but we really haven’t done it alone and I don’t think we ever could have. For me, I didn’t think Remy was capable of a lot of the things she’s doing now and that’s because we’ve had help. We aren’t experts or even close to that, so we need to have these outside supports. We have learned to do research, to find out who the experts are, how to get the right people, to screen them, and determine who or what will be the best fit for Remy.
How It Started
Everything started with Remy having epilepsy. She was having seizures, constantly in the hospital, and there were so many people coming at us with information or suggestions. After we were in and out of the hospital with Remy for several months, with absolutely no idea what to do, we started asking questions and questioning what they said. Zach talks about the societal acceptance and trust that we place in medical professionals and how we can respect and trust them, but still check up on what they are doing and validate what they are saying. They are still human and have one opinion about how their professional expertise is applied to something.
If you are just a “bench warmer” and sit there and nod your head, you are doing a disservice to your child because there may be a better choice or road to go down. So ask questions. What are the options? The side effects? Many of you may be intimidated by medical professionals because they have years of experience and education. But it’s okay to question. Advocating for your child will get them the best service because the doctors may be able to present an option that they might not have thought of before. “It is about advocating and stepping up. It might be a little scary, but sometimes you have to step into the scary to get into what is good.”
How We Have Advocated For Remy
Remy has epilepsy, and when she has a seizure she stops breathing. We were scared to be home alone with her in case she stopped breathing during the night and we didn’t know. We approached going through insurance, but they wouldn’t cover it, so we advocated through multiple government resources and different people to figure out how we could do that. We were able to get a pulse oximeter for our house so we could sleep peacefully at night, but also be there for her if she needed it.
Remy is getting bigger and we were having problems with her in the car and getting her to sit in a car seat, so we went out and got a special needs car seat that’s much more functional for her. We figured out that they were really expensive, so Zach and I found out how we could go through different agencies and figure out solutions from a supplier and how the insurance would cover it or the state.
We will often go somewhere if Remy is in a seizure cluster because we don’t like to keep her in bed all day, so we wanted a stroller that could hold her when we took her out. We did the same process of sourcing and funding and used it to get a special needs stroller that could also hold her oxygen.
Before Remy was able to communicate more, we were pushing to get a speech device. It was really expensive, so we found a way to get resources to fund that. We ended up getting a very specialized program that offered not only the tools to get the device but help to figure out what type she would be best suited for and also to have training for the family and ABA company on how to use the speech device. They came to our house and did training in our home on how to use the speech devices.
Zach and I are talking on this podcast together right now because we have an amazing person that is watching our kids. She plays with them, she knows how to take care of Remy’s seizures, and she knows the medical plan. It is something we had to work on and it wasn’t overnight. But we are here recording an episode and we aren’t worried at all.
How Can You Do It?
We are going to teach you some of the ways you can get the things you want in the next couple of episodes. We were once at the place where we didn’t have any resources and were pulling out hair out because of all of the things that Remy required. One by one, we got through those things and right now we are in a really good place. I love speaking to you and doing this podcast because I know the pain and struggle of not knowing what to do. But I also know how worth it is to go through the steps to get what you want!
I know so many of you are single moms and you have a lot to deal with on your own. What I have learned is that you don’t have to solve everything at once. Do one thing at a time, a little bit each day or week, and it isn’t overwhelming when you start to get into it. You have to be patient and follow up. You really don’t want to do it all at once because a lot of the tools you need are a process of learning. Before you know it, a couple of years down the road your child will have all kinds of services that they need, and you can be living the life that you really want.
- If there is something that doesn’t make sense to you for your child, and it is going against your instinct, ask about it and push back positively. Sometimes doctors and medical professionals come up with reasonable solutions and if they don’t, push back more. It’s part of the process to advocate for your child and get the best you can for them.
- It is important to question and not be a “benchwarmer” because doctors and care providers are definitely going to respect you more and give it more thought. They are in autopilot in a lot of ways, and sometimes you want to step out of the box and advocate in that way to break away from the typical answers they give.
- It’s okay to take it one day at a time and one step at a time. You don’t have to get your child everything at once. Often, it takes a lot of time and energy devoted to one project, so it’s important that you don’t overwhelm yourself by putting too much on your plate.
- It is okay to challenge the doctors and medical teams that are working with your child. It may be intimidating but it is so crucial to your child’s welfare that you make sure to challenge and validate what these doctors are saying. It is your job to make sure your child is getting the best care possible, and advocating at every step of the way is important in achieving this.
- Sometimes you have to do something scary to get something good. It can be scary to confront someone or challenge what they say, especially a professional in the field, but oftentimes you have to do something hard or scary and it is absolutely worth it. You can do this respectfully without getting upset or confrontational and you will see much better results by remaining calm but firm.