Monday, 27 June 2011

Behind Closed Doors

You know the saying - you don't know what goes on behind closed doors. I really like that saying because it is so true. You can make assumptions, presumptions, and guess but you really never know.

I live such a different life to my friends with neurotypical children and consequently when I talk about my life it is sometimes hard for them to understand what I am talking about. They sympathize, empathize, celebrate and support but they can't possibly understand because it is not their life. Even the friends and family who are the closest do not understand what it is truly like to live in our family.

For fifteen years we have lived our lives, stayed strong and tried to stay positive. We have made sure that we haven't hidden ourselves away or separated ourselves from our family and friends who get to live in the mainstream world. At the same time I have made sure that I have made friends in the special needs world because it is so important to spend time with people who understand and don't need long explanations to understand.

In the mainstream world every child is different and comes with their own challenges. All parents share a common bond and it only takes a simple comment such as - Two year old temper tantrums or Teenagers - and immediately you can bond with a total stranger over your child's developmental stage.

Likewise in the special needs world. All our children have completely different diagnosis, labels, stories but we share a common bond and you can usually bond with a total stranger over - therapy, waiting for hospital appointments, toileting, sleeping, feeding, medicating , etc, etc, etc.

When you raise a child with special needs it is physically more draining. You get less sleep. Your sleep is less restful. You have to physically do more for your child and for longer in their life. For a lot of us we can't look forward to our child maturing and no longer being a physical burden, in fact for some the burden increases as their child becomes heavier.

Then there is the extreme exhaustion that comes from the non physical side of raising a child with special needs. The stress of worrying day and night about your child, where they are and what they are doing? Are they well, are they breathing, are they in contact with someone who is ill? Will they achieve their next milestone? What will become of them? What is their future? How can you do the best for them? The list goes on and on.

Quite often behind closed doors the stress of staying strong becomes too much. The emotion wells up and spills over. The exhaustion overwhelms. Sometimes it becomes too hard to cope and you want to hide. Sometimes the simplest things become impossible to deal with anymore. But this all occurs behind closed doors because you don't want to appear weak, you struggle to explain your behaviour and feelings and you need to stay positive in some way.

So it's important to remember that you can never judge a book by it's cover and even if it looks like someone is coping that doesn't mean that they are because like I said ........ you don't know what goes on behind closed doors.


  1. I hope you believe me when I say that I do understand what your life must be like, Jane. And unlike most parents, we're not 'free' once our children reach adulthood. We're parents to small children until the day we're taken from this earth. Exhausting doesn't even begin to describe it. Hugs xxx

  2. I know you do Sharon. It is so nice to have linked up with you, it's just such a shame that we are on opposite sides of the globe. I agree with what you said on one of our other discussions, I think Paul and Cam would really enjoy each other's company.

    I actually find it exhausting to think about the future because I know it isn't going to stop so I'm going through a bit of a head in the sand stage at the moment because if I don't look up then maybe it won't happen. Trouble is - time goes past so fast.