Concentration Issues at School

Hi Julie, it's been frustrating seeing your message and not being able to reply.   I had open heart surgery to replace my pulmonary valve on the 18th of this month, so i'm still in recovery but feeling much better and able to type now   

I'm not a true TOF but had pulmonary stenosis (repaired with a transannular patch when I was a baby), and have just had a valve replacement for the first time (I am now 41).  From my experience when I was younger I would agree that the concentration problems could easily be due to  your child's condition, I particularly struggled with maths from some reason, which I have read about since could be due to my health issues.  In America they seem to acknowledge that having a congenital heart defect can cause issues in education, however how widely this is accepted and how much help is out there I am not sure. I would definitely keep pushing the education authorities if I were you (easier said than done I know). 

I can only imagine from what I have heard/learned over the years that you are being treated as an overbearing or over-anxious parent.  It's time people stopped and listened, nobody knows your child better than you, I don't understand what the issue is with the education authorities, you think they would be glad a parent is taking such an interest in getting their child the help they feel they need.  As someone with a Congenital Heart Defect I am only too aware of how overlooked we can be sometimes and treated as if either we seem to be doing ok and whats the problem or we just need to pull ourselves together. 

I did ok at school but feel I had a lot more to give if the support had been there, I say if a bit of extra support is what you feel your child needs then you are most likely right. 

It's way too early for me to tell how much my valve replacement has improved my condition, have another couple of months of recovery ahead of me yet, but my head already feels clearer, although I am still on medication so how much is the surgery and how much is the medication is anyone's guess at this point. 

I guess if they are stretching out your child's appointments to 2 years now that means they are happy with the stability of the physical condition and that the corrective surgery previously done is holding well.  I know they prefer to put off further surgery as long as possible (i.e. valve replacement) so long as your physical condition is stable, as once you go down that route you will always need further replacements as the replacement valves only  last so long, so the later you can put this off the better really so the less surgeries you have over a lifetime, but if I have understood your post correctly and all you are asking for your child is to have a bit of extra help with education I really don't understand what their problem is.

I am not sure what help my comments will be, but felt really strongly about this when I saw your message.  I hope you are listened to finally.

Best wishes

Kirsty   

I had my first corrective surgery at the age of 9 month, and then again at 24.  I am not sure if it is a ToF thing,  but concentration has always been an issue for me.  When I was a kid I had reports from teachers saying that  I was bright, but that I just didn’t apply myself, and that I always seemed to be in a world all of my own.   Even to this day I have a lot of trouble concentrating or staying focused on things.  I find it difficult to become focused and motivated and to follow through.

The good news is that I learned coping strategies that worked for me throughout my schooling.  I did learn to adapt, and to develop ways of working around these things.  I have three degrees, a masters and two diplomas so I feel like I am moderately successful.  

I guess I can’t say that his concentration/motivation is due to his condition, but regardless, just because he doesn’t demonstrate the ability to become focused and concentrate doesn’t mean that success won’t come later on.