The importance of Respite

Let me just say that I know currently many families would LOVE respite but just can't access it as there is neither the places nor the funding. With the NDIS coming in that should change. If you are a new Special Needs mum I want you to think about this blog but remember, there is no right or wrong way, just what works for you and your child (or in this case family).  

When Owen was a baby, he had seizures, bouts of extreme irritability, endless appointments (DRs and therapy) as well as other things.   We realised it would be a long and bumpy road and that in order to make it we would need help (from then on-wards).  We needed regular breaks for us and to be there for his elder brother.  The second point is so important, I can not stress enough how important it is to make time for the special needs child's sibling/s. So many of their plans change due to some unexpected need of their special needs brother/sister.  They need one on one time as they are just as important.

So, Set up respite supports early.    When they are still babies/toddlers even if you feel you are OK at the moment.  There are many reasons I feel this:

• There is often a waiting list, so the sooner you are on the list the more likely it is the support you need will be available when you need it.
• If you reach that point where you feel you really, really need respite, you are already starting to burn out and as we all know there is still a long way for you to travel and the more rested you are the longer you can travel.  
• If you start respite early your child will grow up with respite being the norm for them. We have the same lady who started with Owen at 2, that still looks after him today (he is now 8). He knows her, she knows him, he loves her, she loves him, he knows her home as he has grown up going there and she is like an extra Grandmother to him.  She is an extension of our family.  Not everyone is as lucky as us to have that.    
• Your other children will get some one on one time with you.  It is important for their self esteem to know they are important. Our eldest is used to us having that time with him.
• Ensure there is time in there for you to foster your relationship with you partner.  It is a sad fact that many relationships fail, even more in the case of special needs families. Have time out for just the two of you to reconnect.  You don't have to do anything expensive.  A walk, a picnic to the beach, anything where there is just the two of you.

What type of Respite?  
It can be a few hours in home to feed, bath  your child etc or an outing for your child.  If funding will allow, some sort of overnight respite.  Even if it is one night once a month.  Again it is getting them used it early so you don't get to the breakdown stage and it is thrust upon them.  With the NDIS coming in I would be asking for a combination of both.

It was hard for me to trust others with Owen but I have had to learn to.  I'm not talking open slather, you do need to vet potential candidates and be comfortable with them. You need to consider the medical needs and implications.  It was also hard for me to ask for help but I learnt I needed to.

I'm sorry I don't usually soapbox but I am going to.  So if you don't want to read a soapbox comment please don't read on.

If you are someone reading this that does not understand the importance of respite  (or the NDIS for that matter) or are the bean counter who calculates how much respite funding a family gets let me ask a question.  Have you ever watched the movie "Groundhog Day?" with Bill Murray.  He lives the same day over and over.  That is how life feels for many families, like Groundhog Day.  Spend a day with them, see what their days consists of.  

For us it is all the things that happen for a 9-12 month old baby, nappy changes, bathing, dressing, brushing teeth, feeding, not always knowing what he wants/needs/is crying about, teething (yes at 8 we are still getting molars through), witching hour, limited timeframe to be out and about before he gets bored or tired.  Add to that medical issues, medication, therapy, appointments and paperwork.  Please don't forget that this is all with a strong, tall,  8 year old boy who can protest about eating, getting dressed or a nappy change and you have my day.  I am not complaining, I love my son, I just want you to understand.

Now I have painted a picture, imagine you have been doing that every day for 8 years and then imagine you don't know when you will stop doing it?    How are you feeling?  Thinking about going to some corner to rock? Imagine you want to be there for your child's needs for the longest time as you love them so much. Respite helps parents like me have a break, to keep going, to take a breath or two.

Imagine you want your child not to need you because you know you will not always be able to be there for them. Like Bill Murray in Groundhog day, special needs parents organise therapy (Ok Bill did the piano) and other development for their kids.  This helps them learn to do the things the rest of us take for granted, so that one day they can do "things" for themselves and wake up from Groundhog day into a new day, just like Bill Murray does. Bean counters ............funding helps this.

I could also go into the mental health implications of all this but I won't at this stage.

If you are starting to worry about me, please don't.  I am one of the lucky ones, I get respite, I have a good network of family and friends,  so most days I am fine.  At this stage I am not rocking in the corner.  Owen also has the most beautiful smile that lights up my world.  If I did not get respite and the support I do, our story would be different.  Owen has therapy so he is slowly learning things.  Other mums  and dads are not so lucky and they are the ones we need to help.  They are the ones you should worry about.  I sincerely hope there is enough funding with the NDIS to go around.