by Sue McKechnie, CKN Editor
September not only marks Childhood Cancer Awareness Month but the beginning of a new school year. For many parents this is a joyful time as kids get back to a regular routine and embark on a new year of learning, friendships and personal growth.
When that school age child has cancer a new school year can bring frustration, apprehension and tears for both the child and parent alike.
Kristine understands the apprehension a new school year brings all too well. Her daughter Evie, diagnosed with a brain tumour at the age of 6 months, is now entering grade 1. Evie is a kind, chatty little girl but due to the various cancer treatments she has endured for most of her life, she has impaired vision, trouble with coordination and is wise beyond her years, making friendships difficult. She is behind on her studies due to class time missed and the learning challenges that kids often acquire from extensive treatment. Recently Kristine reached out to a Facebook group specifically for Moms who have children in cancer treatment, for advice and support.
Kristine wrote, “We have already set up an Individualized Education Program (IEP) through Evie’s school and I have continued to work with her over the summer on letter sounds, numbers, basic math, reading etc. We all know that our kids have varying levels of learning disabilities from extensive treatment but I’m concerned that the change in routine will be very difficult. I can’t help but think that this is one more thing she has to work harder at.” Kristine adds, “Evie has experienced some ‘mean spirited’ kids and does not pick up on it. The thought of kids at this young age being mean because she is different makes me so sad.”
Kristine quickly found out that she is not alone in her concerns.
Kim, mom of Jack, who at 6 months old was diagnosed with the same type of brain tumour as Evie and also suffers vision impairment, replied. “This is so similar to what we are going through with Jack as he enters grade 6. The trauma over the years has caused so much anxiety. Jack sometimes feels like an outsider but just wants to be ‘normal’. He is seeing a psychotherapist who believes that he has post-traumatic stress disorder. He is in a small class placement for the first term this year to help him with self-regulation. He is wise beyond his years as many of these kids are. He tends to see adults as equals rather than authority and can be non-compliant.”
Other cancer moms soon added to the conversation stating that their children are also experiencing trepidation at starting a new school year. Many used words like depression, anxiety and defiance when describing the various emotions felt by their children. Add to these emotions the fact that many children who have undergone cancer treatment have difficulty with concentration and memorization as well as various physical challenges. “Jake has asked numerous times to be home schooled as he is not like the other kids. He uses a walker and cannot participate in sports. Most of the other kids ignore him,” states mom, Patricia, whose son Jake is 10 but is 3 years behind academically due to cancer treatments.
School can be overwhelming for these children who have already had to face so much adversity in their young lives and extremely frustrating for parents who want their children to receive an education and have childhood friendships without it causing yet more anxiety.
Along with validating Kristine’s concerns about Evie starting school, the overwhelming response to her Facebook post also brought a bevy of advice on how to better the overall school experience.
Michelle, whose daughter Lauren was diagnosed with Ewing’s sarcoma at the end of senior kindergarten, felt it was best to educate and discuss than let misinformation and anxiety rule. “We reached out to POGO (Pediatric Oncology Group of Ontario) and they provided an interlink nurse who attended Lauren’s school to educate the teachers, principal as well as Lauren’s classmates. The interlink nurse also came to our home and hosted a session with our neighbourhood, providing the kids with age appropriate information. They were also absolutely fantastic in helping us wade through the education system in order to understand what programs were available for Lauren.” For more information on the services provided by POGO, visit their website www.pogo.ca. POGO also provides an insightful booklet for educators: http://www.pogo.ca/wp-content/uploads/2014/11/Interlink-Book-for-Educators_Fall-2013-V1.pdf
When Lauren noticed she was behind her peers, she was disheartened. Michelle opted to pay for a private neuro-psychology assessment rather than wait 12-18 months for an evaluation through the hospital. Comments from the assessment were added to an IEP already in place and were instrumental in helping Lauren feel better about herself. Michelle adds the importance of being grateful. “It’s hard not to get frustrated but it’s important to show your appreciation to those educators who are on your side. They go above and beyond and will advocate for your child when they feel that their hard work is acknowledged.”
Leanne’s daughter, Jamielee, is entering into a part time Home School Program within the walls of the public school she currently attends. In the morning Jamielee will participate in a specialized program with a group of 7 kids with similar challenges both socially and academically. They will work on math, reading and writing at a pace set by each student. In the afternoon she will go back to her regular classroom. “Jamielee actually missed 101 days of school last year. She is going into grade 5 but is working at a grade 3 level. She is looking forward to this new class structure and we hope it will lessen her overall anxiety when it comes to school.” Leanne admits that getting the IEP in place for Jamielee was a struggle as the school seemed hesitant to help. They enlisted the help of a principal friend to help them advocate. Even once the IEP was in place, they found it wasn’t enough so the school suggested the Home School Program as well. To find out if your local school has a Home School Program refer to your own Board of Education website or speak to the principal.
Tara’s son was diagnosed with retinoblastoma and wears a prosthetic eye. “The biggest boost for Blake’s self-esteem was to meet kids who were also survivors. There are no kids like him at school so having a connection with kids who have gone through the same thing helped him feel better about himself when he was down.”
“We’ve worked with the school to brainstorm various activities specific for Hunter like quiet, still recess breaks,” states Sitara, mom of Hunter, who is now cancer free but suffers from various side effects such as chronic pain and fatigue. “We’ve also tried to build one or two very strong friendships at school….kids who will advocate for Hunter and are more aware of how he is feeling and his abilities. One friend will always let Hunter be goalie when they play soccer because he knows he can’t run around.”
Karen had always considered home schooling but when her son, Tobin was diagnosed with cancer when he was 2 ½ years old, home schooling became the right thing to do for their family. “When Tobin’s tumour returned in the summer after Kindergarten and he was on chemo, I simply carried on with home schooling for Grade 1. Tobin didn’t miss any school work and we were able to enjoy significantly more free time as a family. Tobin’s tumour recurred yet again at the end of grade 4 and even though he was going through re-radiation treatment in Grade 5 and endured many months of somnolence, he finished his schoolwork for the year by the end of May.” Karen admits that it wasn’t easy and required a lot of her dedication. “I found a source for home schooling textbooks and designed our own unique program.” Tobin started public school in grade 7 and Karen is happy to say that he remains cancer free and is now entering grade 12 as an honours student. “Home schooling worked very well for our family and is a viable option for families whose child is going through treatment.” Read the Ontario Government’s policies related to home schooling http://www.edu.gov.on.ca/extra/eng/ppm/131.html or investigate home schooling through the education ministry of your local government. Your local school may also have information available in regards to home schooling.
No matter the particulars, all moms agreed that working with your child’s school is key to ensuring that their special educational and social needs are met. Many talked about how difficult it can be to educate the school principal on the specific needs of children who are going through treatment or have side effects from previous treatment. Your child’s healthcare team can help in providing educational resources and often can advocate to help you wade through the policies and procedures.
One thing is clear: parents are their child’s voice and often need to champion their needs in order to get optimum results.
Every child has a legal right to an education, no matter their ability or need.
Sue McKechnie learned her young son, Shawn had a brain tumour in May of 2006. When he passed away 18 months later after the rollercoaster of diagnosis, treatment, hope and terminal illness, she realized that even though he was gone from this world, he continued to send her courage from another. The message was clear – get out there and help other families sharing this journey. Since then Sue has written the book “A Sippy Cup of Chemo; A Family’s Journey Through Childhood Cancer” hoping to spread the message to other bereaved families that they are not alone. “It’s wonderful to talk to other parents who truly understand – the grief, the guilt and all the myriad of emotions you face. We didn’t choose to be part of this group, nor would we wish it upon anyone else but here we are and we need to support each other.” All the proceeds from her book are donated to Megan’s Walk (http://www.meaganswalk.com/); benefitting brain tumour research at SickKids Hospital, a charitable organization whose committee Sue is a member of. Sue continues to advocate for funding and awareness of childhood cancer through blogging, speaking engagements and her work through Meagan’s Walk.