Recently we headed down to a SNUG  (Special Needs Unlimited Group) Family Retreat at Lake Macquarie, NSW.  It was to celebrate Danger’s surgery and it was our first family getaway since what has seemed like forever!  We were accepted into the retreat program earlier in the year, after filliing out a bit of paperwork etc etc!

SNUG runs several times throughout the year and is supported by the Steve Waugh Foundation for Rare Disease, in conjunction with the Newcastle University.

We decided to break up our drive by stopping in Coffs Harbour for the night.  It was our first long drive with all the kids, and particularly as we hadn’t done this before, we didn’t want to jinx ourselves!  We even managed to stop in a lovely country pub where we all SAT AT A TABLE and ATE DINNER!  It was pretty surreal as previously, we could only go to places which were common to Danger, otherwise anything out of his comfort zone, we would have had a very different experience.

I think it’s hard to understand what it’s like for a family like ours, when you aren’t living a similar life.  And that is fine.  I don’t think it’s possible to understand, nor explain, what it’s like to know that to go out and grab a meal somewhere different is a really hard thing to do when you have children who do not understand social ques, behaviours, have sensory issues, have multiple challenges, including brain injuries, can’t physically sit on a chair for long periods due to muscle control, or lack of muscle control, just to name a few!

But the thing is, for the first time EVER, we were able to do this and had a great hour before it was time to go!

We arrived late in the afternoon at the retreat and met a beautiful family who were from Melbourne.  Later that night, we were joined by another family, also from Melbourne!

We had a great couple of days being able to do things with our new friends. as well as our families, that we just wouldn’t have had the opportunity to do otherwise.  We went ice skating – where we were able to take the kids on the ice rink in a wheelchair.  Danger also had a go of skating himself, after he saw his big sister do it!

We had a great music therapy session where the 5 of us had our own music therapist. Katrina and Bryce have never been to music therapy before and were a little bit too cool for school at the start.  I said to them ‘just wait, this is what the twins have done for a number of years, and it is so great.. you have to experience it first before you judge it!’  Afterwards, they were beaming.  They had a ball!

We were able to do a ropes course, archery and go on walks by the lake.  The rains came in so we weren’t able to do any water based activities, but next time there is the option of swimming, sailing and canoeing!

The organisers and volunteers at the SNUG retreat were fantastic and so accommodating.  We were home away from home and we all just made the most of our time there.

It is hard to meet other families in settings like these, as a lot of the time, you meet through hospitals, school networks or early intervention networks.  It was nice to be able to chat in a beautiful setting about life in general.  People assume you are just there talking about your kids all the time!  It’s not the case at all!  You strike up conversations about all sorts of stuff but most of all, it’s the support we get from one another.

Even though our backgrounds are all different – one thing ties us all together.  All our kids lead challenging and complicated lives due to their conditions.  It’s not typical development, it’s not a typical life.  It’s a different life for sure but it’s very much a rewarding life.  We often see things that others don’t always see when rushing through the days.

We are, in a way, forced to slow down, because despite the therapies and the appointments – our kids are still kids.  They want to experience all the things in life, that many others do.  Typical kids, like my eldest, generally do things very quickly and move onto the next milestone and so and so on.  Before you’ve even realised, the training wheels are off on their bike and they are flying down the driveway, leaving you far behind, and that’s ok!

What’s also ok, is their sibling, who is still learning to ride a bike, whilst having the challenges of hemiplegia and CP, and needs a bit of extra help from mum or dad to help steer and keep them moving forward.  Even though they are all developing at different rates, and hitting different milestones at different times, it’s all about progressing and learning.

You want to know what else ties special needs families together?  They have a wicked sense of humour.  But what happens at camp, stays at camp, so I can’t disclose too much about that!

We hope to meet at the next camp again next year for our reunion and even get a few other families along for the ride too!

 

 

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