Blind and Panhypopituatrism 

“When I was nearly four, my head was very poorly. Mummy gave me medicine but it didn’t go away. I didn’t like it when my head hurt a lot, and once I was very sad because I couldn’t talk properly. I got angry and cried because Mummy didn’t always know what I wanted to say, but I got better from that and now I talk to everybody all the time! My friends help me if I find anything difficult and I have a special teacher at school who also helps me. I still take lots of pills, and my eyes are not very good, so I have to visit lots of doctors, who make sure I don’t get sick again. Sometimes I get to have hospital sleepovers! I play with their toys a lot, and I can have yummy hot breakfasts! I think I have done well at school this year.”

So my daughter, Emily (5) summarises her last two years, during which she has been diagnosed with, and treated for, a large craniophyrangioma and complicating cyst. When I look back, I sometimes wonder how we have survived the whirlwind of that year?

However, two years on and she’s doing well…

Emily is a fiercely determined and ambitious little girl who has not once let her disabilities define or limit her; I see my role now as ensuring that there are supports in place to ensure they never will. She is just as keen to explore and embrace the opportunities around her as ever before, and, like all parents, we want to be realistically ambitious for her. However, whilst the doctors have reiterated that it is important for her to live as ‘normal’ a life as possible, we have had to understand and then accept that this is now a new ‘norm’ since diagnosis. Emily is not the little girl she was, but she is most definitely still Emily, her cheeky good humour, intelligence, and innate curiosity unchanged, but now backed by a robust strength and fortitude. As parents, accepting this change has not always been easy, but we firmly believe that Emily should be offered the same opportunities as her peers, with additional support provided by the relevant authorities to enable her to develop her own adaptations to succeed. 

As an educationalist myself, and Deputy Head of my current school I am obviously passionate about ensuring children get the education they deserve. This is often hard to access and it can be a lonely experience trying to access what you know your child needs.

What has ultimately proven key to the progress Emily has made is her EHP provided by the local borough which supports Emily in a mainstream classroom; this has proved to be invaluable and we are tremendously grateful that her needs have been recognised and that the appropriate support has been granted.

“I enjoy coming to School and I feel safe with my one-to-one who helps me to do my work. I have learned how to take turns and not to get cross if people bump into me. This is something I find quite scary as I don’t see them. I love Sport but need lots of help to keep me safe as I can’t see across the playground. It is hard to know where other children are when they are running around. I also love Music: I sing all the time and love it because I don’t need to see and I can remember the words easily. I would like to learn to play an instrument like my Daddy.”

With the aid of her one-to-one support worker and ongoing guidance from her medical teams, it is genuinely inspiring to see how quickly and easily Emily has accepted – and where possible, overcome – the challenges posed by her tumour and treatment side-effects. It is undeniable that she faces more challenges than most children her age, but she has also developed an incredible strength and resilience. 

“I do sometimes get cross if it is hard work to do something because of my eyes, but my one-to-one is helping me to try even if it is difficult at first. I get very tired when my pills run out and I often feel quite poorly. I like learning new things and I have fun at my school! My class are kind to me about the things I find hard, and I have made some really good friends. Next year I will be in Year One and I can help the new children to settle in at school and find their way around.”

Reintegration of Emily back into education, post treatment was certainly one of the biggest and most overwhelming challenges I faced.

I have tried to identify some key thoughts and strategies I employed which I hope might support and inspire other parents working to get their child back into school post treatment and diagnosis.

  1. Fight for your child – they get one chance at education and ensuring they get what they are entitled to is worth it.
  2. Work with the school to ensure they understand the condition – I spent a long time talking to Senior Leadership about Emily’s needs. I was advised to reintegrate Emily on a part time basis initially – this was great advise and ensured she coped with the demands of being back at school.
  3. Ask to be involved and present in the classroom if you feel this is appropriate – I sat in with Emily for several weeks initially to support her and the staff to ensure she was properly catered for.
  4. Request an educational psychology assessment and if appropriate request an application for an Education Care Plan to be put in place. Whilst this is a lengthy process, it is very much worth the time invested and will provide children with the provision they need to function in school.
  5. Involve the community care team – community services are good and although I have had to work hard to build relationships the support available is vast when the right services are approached and accessed.
  6. School community nurses should set up care plans which ensure the children are kept safe in their school environment – ask your consultant to do a referral and create these links.

Fundamentally, my role is no different from that of any parent: to prepare my child in the best way that I can, to enable her to move forward confidently into the world. Her route forward may well be slightly different, and thus I have had to learn to call on and accept additional support and services, to enable me most successfully to help her. At times this process has seemed frustratingly difficult, as so often children as complex as Emily may fall within the remit of many possible services, but too often fall between the gaps and are not properly picked up by any. However, when the endless appointments, assessments, and referrals have seemed too much, I have only to look up at my laughing daughter, as she fearlessly circles the bumpy paths of the park at great speed on her scooter. My role is just to smooth the way ahead, hers is to travel it.