What If Something Happens and I\’m Not There

Primary school, secondary school and college can be stressful for all involved with or without haemophilia.  What if something happens and I’m not there?  Do people know what to do if something happens? Are they doing ok in class? Are they making friends? Bullying? When haemophilia is involved in the process, other problems arise for kids and adults. One of the big ones for the kids, is why do I have to be different. So how do you reduce the worry, even just a little bit?

Let’s clear up one of these questions straight away.  Something WILL happen. Murphy’s Law or whatever you want to call it but no matter how well you plan it something will happen.  Quick example, I used to play soccer at the break time with the other kids. One time I was asked to stand at the post.  No problem I had done it before so it was no big deal. The ball gets crossed in hits me in the face, pushes my head back against the metal post and I got concussion.  So I stopped playing for a while and I felt isolated.  About a month later I was sitting watching a game of volleyball from the sidelines just leaning back against the wall.   Suddenly somehow my head developed a personal gravity field and pulled the volleyball directly to my face knocking me back against the wall and again I got concussion. So what was better, not playing and feeling isolated or playing and having the same thing happen?  From working with kids over the years, and as parents you know these sort of incidents are common, and it’s rarely the things you plan for that are the problem.

So what can you do to prevent it? Nothing! You can only really put the best possible plan in place.  Thankfully with prophylaxis, spontaneous bleeds are reduced and factor levels are in the best range they can be.  The quality of the kids lives today are greatly improved so they can take part in a lot of activities and reduce the feeling of isolation.  So what else can you do to reduce stress to you, teachers and the child when something does happen?  Explain to the teachers the facts and what they need to know about haemophilia such as what to do if the child is limping or complains of being sore, (i.e. ice, rest, and call parents) contact details for the parents, how immediate contact is important especially for head or back injuries.  If your kids are going to school for the first time and you are not sure about all the details you should give or have any queries, contact us the Society.  We will be happy to help.

This is a hint which you may choose to ignore, but my personal opinion is not to let the child know you talked to their teachers for two reasons.  Firstly, it can create the feeling with the child that they are being watched, which isn’t a nice feeling and secondly (speaking from experience) if the child knows what the teacher has been told they might use there haemophilia to get out of certain things.

One common worry with children is the want to fit in or feel “normal” (forgive me for the term but I think you know what I mean).  With prophylaxis this is easily achieved when it comes to school activities, sports and generally being more involved on a physical basis. However, and this is just a thought, sometimes with kids trying so hard to be part of the group they end up hiding their haemophilia, and are afraid of the others finding out and wanting it to just go away by ignoring it.  I am not suggesting the child should tell everyone they meet but encourage them to be proud of who they are including their haemophilia and are comfortable with all that surrounds it.  The earlier this starts the more interest they will have in self–infusion and taking responsibility for themselves which has a knock on effect if something does happen at school or when the parents aren’t around. Continue this throughout primary and secondary school and it will continue into college and for the rest of their lives.

So what are the worries for college if you are sending your kids off for the first time in September?  I will only look at haemophilia related problems and not ones like how to make a slice of bread and a tin of sweetcorn last for 3 days. Firstly, I just want to mention that most college’s have a very good disability service who have a number of services that you can access. The major areas that parents seem to worry about are: what if they get knocked unconscious, don’t get a vein, or don’t take factor.  Ok being knocked unconscious, apart from being prepared with medic alert badges and the medic alert cards from St. James’s, there isn’t much you can do about it no matter where you are.  I realise you are parents and this it is your right to worry but it should be the same amount as with your other kids and not more so because they have haemophilia.

If you do not get a vein then you can try another and if that doesn’t work then there is always the option to go to the local hospital ad they can administer it as long as you bring the medicines and the boxes they come in.  I’m glancing over this because it does happen all the time.  I started self-infusing at 9 and almost always got a vein. I went through a period in my leaving certificate year where I couldn’t get a vein for about 6 months.  Once you lose that confidence it can be hard to get it back but it happens us all and it always comes back so don’t worry about you will get it in the end.

And finally the issue of not taking factor or as I like to call it haemophilia related optimism.  Lets be honest none of us want to take a shot ever and that never changes. We have all used the phrase “maybe it will go away” or “maybe it’s just tired”.  When your kids are away they will eventually realise that it doesn’t and it’s not just tired.  This is one of those lessons they have to learn themselves and you can’t really help with unfortunately.  They will figure it out themselves some night they want to do something and they ignore it and then end up coming home early or going to the hospital but at the end of the day by college its there choice.  They will figure it out.

In case you are wondering about sports for kids in school or college this is a discussion for another day but staying fit is a huge benefit.  An active lifestyle encourages healthy muscle and keeps a good range of movement and I personally say a reduction in bleeds as well as the obvious social benefits.

In summary, parents this is a hard time for you in general sending kids to school for the first time or changing schools or college but with current treatment and educating the kids on haemophilia, you shouldn’t have any extra worries than normal. Kids, don’t worry about school or college and haemophilia.  Just be yourself and it will all work out…..eventually!


Declan Noone