Here's our experience and our learnings from this process after our first year.
- Be Yourself. I found that if I was comfortable, respectful and in control of myself, it made everyone else feel comfortable too and the conversation went well! I love humor, and was able to weave that into the discussion making everyone comfortable seeing that I was approachable and human just like everyone else in the room. Going in with a positive attitude expecting the best was the best choice for us, and it delivered in so many ways just having the right attitude.
- Bumps in the Road will happen. These are children not robots who act according to plan, that's why the plan has to be flexible and adapted. Alex did some things that weren't exactly to "plan". Hunter Syndrome carries with it some aggressive behaviors. Sometimes these behaviors happen in peaks and valleys and when you can't communicate well that just compounds the issue. We talked things out, always. We supported the school and the teachers but also communicated what we thought was best for Alex. In the end, we're happy with the plans we had and the plans we had to adjust on the fly.
- It is emotional. I found myself getting a little choked up on the way to the IEP meeting. There's a lot of discussion about if your child is making their goals, if not what's the next step, and what you want for their future. We didn't want him to have to deal with such an awful disease, and have to fight for his life; every medical or development discussion brings this right front and center again. It's painful but we try to focus on the fact that this discussion is to help him gain, help him live, give him a chance to get into a clinical trial and save his life. It's not a plan or about the short term, it's a mission. It's a mission to save Alex.
- It's not your only chance. Yes the IEP process is formal and there's a lot of documentation. We found our team though to be flexible, willing to work with us, willing to adjust whenever we needed an adjustment within reason. So each review, each change to the plan isn't your last chance, it's one chance of many to adjust and form, and adjust and form the plan to what your child needs as he progresses along or faces setbacks.
- Gain Advocates, make everyone want to be on your team and inspired by your motivation. We built a strong relationship and now have 8+ advocates for our child. The teachers, therapists and staff help us when we need a different perspective on our child or need them to write a letter outlining their view of our child. This team is always there when we need them. They've helped us find the right techniques to ensure Alex can participate in the clinical trial, and they've been a sounding board when we're struggling. They know our mission is to save him, and they're on board, doing all they can. Feeding back to us what we need to know every point along the way. This by far is the biggest benefit to us as parents, we feel so supported by this wealth of experience and resources. I am never afraid to say to them, is this weird or what do your think about this or what do you see in the classroom? I too think it reminds them why they are so motivated to be teachers, therapists and aids.
- Future Goals don't have to be profound. When you are looking back at a year, and trying to forge what the future is going to look like I found myself focusing on goals that say, "I want to live, I need a better treatment or cure, and then I want him to be what he wants to be...an astronaut, a fireman, whatever that is...instead of those hard, lofty goals we settled on the basics continue to build, and build and build on his progress, continue the good work and the focus on him and his achievements. He's smart and we know he can do it, we know he can improve and settling with "non-profound" as I put it but very sound basic goals really helped us.