Any parent of a child with Hydrocephalus knows that the condition renders certain challenges and difficulties (Saying that feels like an understatement). It’s a journey of discovery with many unknowns and scary pathways. No one person with Hydrocephalus is the same as the next, despite having the same condition. We are different but we can relate to each other and I for one, use the experiences of others as a benchmark.
With this said, I realise that there are challenges I might face that are just not the same as the next person. However, there are also things I will go through that I share (hopefully) to the benefit of the next Hydro warrior.
A hydro mom reached out to me earlier this week, she too lives in New Zealand. She asked questions alluding to the fact that she’s concerned about her son’s memory and cognitive skills. She feels he might get left behind at school and is seemingly dealing with teachers and people who do not understand the condition or its challenges.
Convincing people when it comes to an invisible illness is one of the tougher challenges in life, I’ve found. I’m no expert, but in my opinion, Hydrocephalus (as common as it is), is not that well understood or even known about…New Zealand is no different. There isn’t much support and follow up care seems non-existent here, at least from my adult point of view.
I wasn’t born with Hydrocephalus and therefore can’t say how the challenges with memory would be over the baby to teenage years. I feel I can compare though because I literally have a before and after picture of how I personally used to be, to how I am now, having been diagnosed at age 29.
The type of questions I get most of the time is “How is your memory affected when you are born with Hydrocephalus? Does it ever improve?”
These are questions to which I have no answers, except what I have experienced as an adult diagnosed later on in life. I have memory challenges as I’ve previously written about and I can’t honestly say that it’s gotten better. However, I believe that the systems I’ve put in place, have helped me to get to a stage where I can say I’m “managing“.
My advice to this mom was to ensure that her son has a routine. The more you do things the same way, (I believe) you create new memories…eventually they stick. Repetition breeds familiarity and soon enough, there’s no need to think about what you’re doing, it just comes naturally. With this though, I’ve found that doing anything outside of that routine has left me feeling a bit confused and stressed every time. However, because I’m the kind of person who likes to challenge myself, I do it from time to time just to add that extra layer of “I got this“. It’s my challenge and it helps me, though when it starts stressing me out, I return to what I know despite it being monotonous. (I wouldn’t necessarily advise this until you or your child feels comfortable enough).
Writing things down is sometimes one of the things that save me the most. I type notes on my phone of things that I need to remember, the only thing I need to remember after that, is to look at the notes on my phone. (As an example, my husband and youngest son have the same socks but they are different colours. Despite him telling me over and over again which colour is his, it just won’t stick. I typed the name and colour on my phone so next time I do the laundry, I just need to look on my phone). If I should forget and at some point remember something (this has happened), I know where to go first for a jog of my memory. It doesn’t make life easier in terms of others acceptance of my memory challenges…it’s just extremely frustrating!
I had to work on myself first, come to grips with the fact that things have changed from before diagnosis to after. To accept that I’m no longer that same person. There are many times when my own family (husband and kids included) will remark that my memory is better than theirs. What they don’t know is that I’m being like a duck every day of my life 24×7. It’s exhausting…
I had to condition my thinking and learn how to accept when I mess up or make mistakes, to not be so hard on myself and try harder next time around. But, the most important thing was to learn how to work within the limits of my life and Hydrocephalus. This in itself is something to be aware of as a parent and it might just be a new way for you to approach the crossroad when your young one is in front of it.
If others have a hard time understanding or accepting all of this…well, that’s their problem. Children won’t necessarily stand up for themselves in these situations because I don’t think they are mature or strong enough to understand/process all of it. Also, they probably see themselves through everyone’s eyes around them, they look normal…so they must be.
This is where you as their parent comes in. From the time you were told of their condition, your life changed in more ways than one. Your title changed and became a tad more important “Parent-Advocate“.
You are going to need to be the one who helps them not to be hard on themselves. You are going to be the one needing to have those talks with others, especially at school. You need to help create an environment for them where they can still be a part of the functioning world they are living in despite their challenges. Things such as memory and cognitive issues are to be expected so prepare yourself for this. I’ve been told that memory loss is short-lived post op and that most people return to normal. I guess I’m not most people so, I’m not holding my breath…
Find out what’s in place (in your state, region, country) to assist you and your child so they can thrive to the best of their ability.
If you are in New Zealand, this is the advice I received and will gladly pass it on:
I dealt with someone at the Ministry of Education for my own daughter who has selective mutism (more on this in another blog).
My question to her was:
“I’m looking for some advice or guidance. I have a friend whose child has Hydrocephalus. He is having some memory and cognitive issues at school and falling a bit behind. His teachers don’t understand his condition or the effects on his learning ability.
Do you know if there is any support for children with this condition from the Ministry?
Any advice would be appreciated.”
The response I got:
“It’s difficult to say as criteria for support from our School Focus team is based on a child’s individual needs rather than a ‘diagnosis’ as such. However, if his learning is being affected then the school can make a referral to receive support from the RTLB service. The RTLB service is a group of specialised teachers, Resource Teachers of Learning & Behaviour, and can support a child’s individual learning plan by working with the teacher to suggest strategies/learning support for a child.
So, as the first port of call, I would suggest your friend talk to the teacher about what they are able to do to support her son’s learning. If the teacher is unsure and feels that they need some support, your friend could talk about the possibility of a referral to RTLB.”
At the time of passing on the above advice, this mom thanked me and said that she wasn’t even aware of it.
Hopefully, this can help you to make enquiries in your own state/region/country. Feel free to share in the comments below if you know what’s available (It would be great if you could say where in the world the service is available), it might just help another Hydro parent.