My Child Has NF1: The Parental Paranoia

Information, help & support
for those who need it.

Editors note: The following is a blog submitted by a member of the Irish NF community, who asked to remain anonymous. The subject of this blog is parental paranoia associated with being a parent of a child with NF

 

What’s so different about being an NF1 parent? Or NF1 and parental paranoia – let’s take it to the max!

All parents worry about their children. It doesn’t matter how robust or ‘well rounded’ your child/children are as a parent you will find something to worry about.

 

Are they getting on well in school?

Are they making friends?

Do they need glasses? 

 

When your child has NF1 you have normal parental worry, as above, and then you get the diagnosis worry.

The diagnosis worry for NF1 is in part due to it being such a wide-ranging condition. Just about anything can develop during your child’s life.  So, you worry about how your child is coping with the known issues (the diagnosis).  So, let’s add

 

Will my child be picked on because they have visible cafe au lait spots or noticeable speech delays?

Are they being excluded because they physically cannot participate in some activities? (Hyper-mobility is a bummer)

How much physio is too much?
Speech therapy on top of homework, if we can only do one which will it be?

Are we doing all we can?

Have we missed something?

Are we focusing on the right things?

Are they keeping up with the school curriculum?

Is their current behaviour normal or a developmental issue?”

 

This list is endless……..

As NF1 is the condition that keeps on giving, we can add uncertainty to the mix.

 

What will my child have to deal with as a teenager, young adult?

What other challenges will this condition bring to bear?

 

As with all parents we wish to ensure that our children thrive.  How do we nurture self-reliance and resilience as they face a life time of uncertainty?  Still working on this one so any ideas gratefully received!!