Thread by @CancerSurvSM

Thrilled to be here to talk about something so important today! Concerns after #childhoodcancer tend to live on, and so often in the form of its impact in academics. #CSSMChat

A brief intro about our experiences. My son was dx at 2 yr old. And regressed in speech. So we began support while still in treatment with speech therapy. #CSSMChat

Hearing loss was determined as moderate to severe after my son's first dose of cisplatin. He was fitted with aids right away & we began to work with him immediately. #CSSMChat

After treatment, we worked with a hearing therapist. She taught me so much about how to support Josh academically. One of the best resources I have found! #CSSMChat

In public preschool, we prepared an IEP. Josh was smart and engaged, and LOVED school. He didn't meet the criteria for special education for long. #CSSMChat

The IEP was converted to a 504 Plan, which grants "equal access to education." It can build in just as strong of supports as an IEP, and ours was! #CSSMChat

The main difference between an IEP & 504: IEPs are special education, 504 identify areas that challenge access to education and grant appropriate accommodation. #CSSMChat

The 504 changed each year, as side effects got worse & Josh needed more support. We met with our new team of teachers each year BEFORE school started to talk about the hearing. So helpful! #CSSMChat

I never let up. I learned all I could about the process & talked to other strong parent advocates with kids w/504s & IEPs. I partnered with teachers as much as I could, met with them regularly and gave them feedback on what was happening at home. #CSSMChat

Beginning in middle school, things got to be a bit more challenging. We saw more impact from the hearing loss, and the expectation to learn faster was hard. Josh just couldn't keep up.

I started to have to teach the teachers about the impact of hearing on academics. They thought he should be doing great. In fact they wanted to take the 504 away. Instead, he needed it more than ever. #CSSMChat

It was then I began to explain to teachers what the toll at school looked liked. I would compare it to Josh having two broken legs and hobbling around on crutches all day. He could do it, but it'd leave him exhausted. That's what it was like for Josh at school all day. #CSSMChat

In high school, w/ cluster migraine merciless, hearing loss now profound & chemo-induced ADHD & cognitive decline so challenging, Josh began home/hospital care #CSSMChat

We didn't know if Josh could or would graduate, but his home/hospital support was amazing! She came to the house and provided one-on-one care. He graduated because of her. She will always be in my heart. LOVE that woman! #CSSMChat

Very important to know, IEPs end at graduation. 504 Plans are lifelong. If you have an IEP you will want to schedule a meeting in the spring of your child's senior year to have it converted to a 504 Plan. #CSSMChat

So now we can open this up a bit to look at academic impact of childhood cancer treatment. With such a wide variety of cancers, so too are treatments, with different risks. I'll list some risk factors as identified by St. Jude #CSSMChat

Risk Factors include:
DX at a very young age
numerous or prolonged school absences
learning problems prior to diagnosis
long term side effects re: energy, hearing/vision, physical disabilities
treatments affecting the central nervous system #CSSMChat

It would be good to explore with your team what types of academic challenges often impact children with your child's diagnosis & treatment. #CSSMChat

In addition to this list, I personally would add your child's level of anxiety/depression/changes in side effects. Is your child bullied (common sadly)? And be aware that puberty is a more vulnerable period. Even the level of stress in the household can play a part. #CSSMChat

And to this last point, please include our precious siblings of our childhood cancer survivors at risk. Without support, they too can experience academic impact. #CSSMChat

I was at a conference once where a presenter said "You can't paint the barn when the hurricane is approaching." The point was you can't learn while experiencing high levels of stress. So many of our survivors, and siblings, experience a high level of stress. #CSSMChat

The Coalition Against Childhood Cancer (CAC2) began an antibullying campaign because of how strong of an impact this has on our kids. cac2.org/interest-group… #CSSMChat

I wrote a blog about our own experiences on bullying. It is such a heartbreaking experience, after cancer. But with love and grace, you can help your child through it. Hugs to anyone struggling with bullying in school #CSSMChat cac2.org/childhood-canc…

And because it is worth saying twice - hearing loss has a significant impact on development & learning. People need to respect hearing loss more, and its impact on the developing brain. With our children, there is no such thing as "minimal loss." #CSSMChat

Hearing aids are an important tool, but they are not THE ONLY important tool. There is so much else we need to be aware of, and do to support our children impacted by hearing loss. #CSSMChat

Hearing loss disturbs the hearing-speaking-reading-writing loop of learning. The loss makes every step of that cycle harder. And it gets worse every year in school, as our children get older: the pace in class goes faster, and they are needing to read more. #CSSMChat

One of the greatest impacts my son experienced was the transition to middle school, when less pictures appeared in his text books. And he was expected to read chapter books. He was lost without the pictures, which gave him far more information than I was aware off. #CSSMChat

One of the most amazing teachers we had gave Josh extra pictures in 6th grade to coordinate with what he was reading. These are the amazing human beings we come across who help us in our journey. Josh got thru his first chapter book w/out pictures because of her #CSSMChat

There are a lot of supports that can be put in place in classrooms today to help with hearing loss. But it comes down to whether or not teachers are able to consistently respect them. For example preferential seating is great, unless the teacher walks @ the classroom. #CSSMChat

I met with every teacher again, a few weeks into the new school year to see how everything was going. And with each teacher we'd create a plan for that classroom. Very hard to do in high school with so many teachers, but without hearing instruction how could Josh learn? #CSSMChat

My heart goes out to every child struggling with hearing loss right now. Our children are lost in a sea of masks, w/many schools requiring them. Request an emergency meeting if your child is already struggling. Your child deserves to be supported. #CSSMChat

When requesting a meeting with the school, do it via email to record the date. They are required by law to set up a meeting within a set number of days to discuss your concerns. So many kids will be struggling this year, so this is a time to make haste - do so now. #CSSMChat

So now let’s talk about testing. There are tests to evaluate brain function. It is helpful to get a baseline after treatment & monitor changes as your child matures. #CSSMChat

Many cancer follow up plans include psychological testing. For us, neuropsychological testing was done every 3 yrs. If yours does not, you can request a psychological-educational eval. Best to have it done with an evaluator familiar with the impact of chem/radiation #CSSMChat

If it is not required, and your insurance won't cover it, then the testing the school provides may be enough to give you a good sense of areas of concern. Any testing is better than none as it all provides important information about brain function, strengths & weakness #CSSMChat

These evaluations help to identify what is going on in the brain, what is working, and where help is needed. It it includes recommendations on how to support your child - for you and the school #CSSMChat

These tests were critical to keep track of how Josh's ability to learn was changing & how his side effects were increasing. I needed the new diagnoses the testing provided & the recommendations. The mtg with the evaluator after the testing was so valuable to me! #CSSMChat

It can be challenging as parents. We are so concerned about kids, and their side effects. And about their success in schoo. But.... you are not alone! I worked w/ incredibly caring teachers, administrators & our audiologists. And fellow parents. We help each other! #CSSMChat

I never stopped exploring strategies that worked for Josh. We used multi-sensory approaches. We read a great deal out loud together and talked about it all. #CSSMChat

One of the most important things I learned was to respond to what Josh could do AT THE TIME. If he was tired/sick/stressed, he rested first. Then we considered whether he could do schoolwork. #CSSMChat

If one method didn't work, I tried something else. I didn't keep doing what didn't work, I changed our approach to what would work. And what gave Josh confidence. A confident child is a capable child. And as he got older, he needed more support. #CSSMChat

I could talk all day about this, but I'll end this by saying my son did graduate. It was very hard but he did it. And I made sure his 504 Plan remained active. #CSSMChat

Despite everything - all the challenges, all the fears, all the times I didn't know what might happen, my son is living his dream. We have an incredible music studio in our basement. Despite his side effects & hearing loss, he is living his dream. #CSSMChat

Wishing you all the best. And you can write me anytime with questions: [e-mail] Thank you again for joining me for today's chat! It was a pleasure to share my experiences with you.💛🎗️ #CSSMChat

You also can connect with me on Twitter @marb1111. Further @PREP4Gold is an organization actively addressing academic issues for our survivors - and siblings - and will provide ongoing information for families.