Planting the “special needs” seeds

Because Hannah’s disease progression is slower than was originally expected (thank goodness!), we have been able to slowly plant the seeds of Hannah’s illness to Ethan (8) and Abigail (5). 

We made a very strong point never to say she is “sick” but that she has a “disease.”  We don’t want them to connect being “sick” with always having a serious outcome.

Because Ethan is older, we have able to get more in depth with the situation.  For example, there is a boy in his school with physical special needs (including a wheelchair and constant assistant).  We were talking about him the other day, and I made the comment that “you know, Hannah will be a “special needs” child too.”  That led to a discussion about her developmental delays and orthotics.  He had never put two and two together before, but this was a good discussion into it.  He made the comment, however, that “Hannah doesn’t look like she has special needs.”  After explaining to him that special needs is more than just a physical thing, I think he has a better idea of the situation.  Fortunately with him, we had the discussion, he asked questions, and we have moved on.  At least that door is open now.

With Abigail, we talk about her disease causing problems with her eyes and making it harder for her to learn to walk, eat, and crawl.  Abby knows that Hannah has lots of doctors appointments, but we just say they are trying to help her.   That seems to work for her.

One step at a time.  The discussions are now out there in the open, and as time goes on, we will keep sharing more information as it becomes necessary.