With Jackson, my priorities have been fairly simple:
1. Keep him alive.
2. Everything else.
We’re extremely thankful to have a child five years out from Neuroblastoma treatment, alive without relapse. We’ve finally achieved number one. (Except on those days when he’s being super sassy, and then I have to keep reminding myself of that point.) It’s everything else that throws me for a loop now: anger, anxiety, recurring stomachaches and hearing loss.
In March, Jackson stomach pains were so bad we actually had a full workup — CT scan, labs, urine — to check for relapse. I didn’t share that on here because it was one of those things I was afraid to write lest it came true. Everything came back fine.
As you guys know, I’ve been working hard this year on Jackson’s school stuff. He has moderate to severe high frequency hearing loss from chemotherapy and wears hearing aids. One of the reasons we decided to go with public school was the fact we could have access to extra accomodations. Before school began, I initiated conversation to get things ready for him.
I learned quickly that nothing works quickly.
After child study and an audiological exam, Jackson was turned down for an IEP. He’s doing “too well” for special education services. They explained that his problem is medical, not educational, so 504 was a better option. By January, we finally had a 504 in place and started accommodations in his classroom. Now he receives small group testing, preferential seating, extra reading help and closed captions on movies. It’s been a big help already — he just had his best report card!
The biggest thing I’ve wanted for him, an FM system, has continued to be a no. This photo explains how it works for those who don’t know:
Basically his teacher, or whomever is the speaker, wears the microphone and it helps Jackson hear better, without straining over the background noise of a classroom.
As this momma tends to do, I scheduled additional opinions. He had a hearing test at his long-time audiologist and also a yearly speech evaluation. Armed with those reports that supported the need for an FM system, I resubmitted them to the school and, fingers crossed, we just added an FM system to his accommodations under his 504 plan this week! There are a few hoops left to jump through, but I think we’re on our way!
The process is EXHAUSTING. And that’s for just this year; school goes on for quite some time, you know. So when I heard EVMS was putting on an IEP workshop: Skills for Effective Advocacy in the IEP Process, I was excited to attend.
For me, the most beneficial part of the whole workshop was a large list of resources they gave us for children with hearing impairment. It would have taken me a really long time to put all that together, and it was already done for me! Awesome.
Here are my eight BIG takeaways from that seminar:
- Keep your high expectations. Your child can be a straight-A student, go to college and become a Rhodes Scholar. Just because there are some difficulties in how your kid may learn or process information, doesn’t mean they can’t be more. Keep your fire, parents!
- Think about the future and long-term goals. This is a weakness for me, because I always think in terms of right now. What can we fix today? I’ve been very focused on wanting help now for reading and spelling. I’ve been lucky that the educators at Jackson’s school keep thinking in terms of benchmark testing and third grade quizzes and big-kid stuff I haven’t yet experienced with Jack.
- If you’re not being heard, tell them: “I’m not being heard.” Use the term! When you sit down for an IEP eligibility meeting, it is very intimidating. Even if everyone is smiling, there are at least seven of them, and one of you. If they all agree and you disagree, it’s very hard to stick to your guns. If fact, I gave in at my IEP meeting when they turned down the FM system. I felt like it was a compromise situation — they’re going to give him accommodations in class, so I should be happy with that. And then I cried on the way home because it wasn’t what I wanted. I tried my best, gave it my prepared answers, but I should have stopped and said “I’m not being heard.”
- Don’t sign anything if you’re not happy. I signed because I felt I had to. Momma bear gets intimated when she’s wildly outnumbered. I wished I hadn’t signed it because it took me five more months to “hopefully” get an FM system. This paperwork is actual legal documentation. It can be changed, eventually, but like I said before, nothing moves quickly. If you’re not sure, just tell them you don’t want to sign because you want to review it with your spouse. (That’s a good excuse if you feel pressured.) If you’re happy with the plan, by all means, sign away!
- Keep copies of everything. I get flooded with papers at our house. I don’t know what to do with them half the time. A week of papers from school will take up my entire kitchen table! I get pretty throw-away happy on the weekends. This point is actually something I need to work on. If you save progress reports, tests, homework assignments, etc., you can present your points with documentation at an IEP meeting. Remember: it’s very hard to ignore requests when they’re solid and supported.
- Come prepared with problems and solutions. Do your research. Talk to your teacher friends and see if they have suggestions for solutions. Come to the IEP meeting with exact problems you see in your child’s schoolwork and then pose solutions based on your observations.
- Ask for explanations of terms you don’t know. Dude, I seriously have no idea about half of the terms educators throw around. These department of education people sure love a good acronym! It’s okay to ask. You need to know what you’re agreeing to. CFI is Center for Family Involvement, not Cupcakes for Fun Individuals. Know the difference.
- Bring a photo of your child to your meeting. At first this sounded silly and kind of manipulative to me, but some of the people sitting in an IEP meeting will not have met your child. I didn’t think to do this, but I bet if I had, they would have given me the moon. How could you not give everything to Jackson’s cute face? If your child is old enough to participate, by all means, ask if they can. Jackson explaining his hearing problems goes a lot further than me. He’s just cuter.
Above all, know this is a process. Ask your school to explain how it works before you get started. It can get confusing and disheartening, but don’t give up. You are your child’s VERY BEST ADVOCATE!