Sometimes travelling close to home can still be an adventure. BJ had his first overnight stay in respite this weekend and although only 40 minutes from home, it was a test for all of us. Taking the first step was difficult for me.
You may be wondering why we haven’t used respite before. Part of the reason is the name “respite.” To me, and this is just my feelings on the matter, it conjures up a necessity to alleviate myself of something difficult and rightly or wrongly, I saw that as a negative. Although our life is full-on with BJ, I just don’t like the term.
When BJ was younger I kept putting off sending him to respite thinking, “when we get his sleep sorted” that will be when we will give respite a go. Many years later the sleep is not sorted and it has really given us more reason to seek out some help to get a good night ourselves.
BJ does weekend and school holiday outings with a Cerebral Palsy Alliance respite service and we love the carers who all know him so well, but an overnight stay was the final frontier. One I was loathe to cross.
But we have done it and I am relieved for all concerned we have. I think it became a bigger obstacle because we left it so late to give it a go. I wish we had done it earlier but everything is so much clearer in hindsight.
So, on Saturday morning we packed BJ’s bags and delivered him with everything we felt may help smooth the way for him. I had felt anxious in the week leading up to it. A two hour meeting with the Cerebral Palsy Alliance was completed where we shared BJ’s medical history, routine and we found out how medication had to be supplied. We have never had to webster pack medicine before.
Driving to the respite house I kept thinking of things I should have packed or information I should have shared in the meeting. Hubby kept saying, “Relax”. Never have words been more irritating, no matter how well meaning.
We dropped BJ off and Hubby, AJ and I headed out for a day at the beach. I decided we should do something we wouldn’t normally do with BJ so we took the ferry from Palm Beach to Patonga (unfortunately the ferry isn’t wheelchair accessible.) It was a glorious sunny day and the views of the untouched bushland, other boats on the water and a smiling AJ finally had me relaxed.
We lingered over a long lunch at the Patonga Hotel (BJ hates lengthy lunches) played hang man and the dot box game on our serviettes and generally enjoyed the different pace. (If you are driving to the Central Coast the Patonga Hotel is wheelchair accessible, has water views and delicious pub-style meals. I can highly recommend it for lunch)
Wandering along the beach hand in hand with Hubby was lovely and AJ was full of chatter. It was a fabulous day and I was confident BJ was having a good time with friends and staff.
Driving home I got a little anxious again and made a call to the house. All was going well but I was keen to know when BJ was settled and asleep. A message was promised. The staff were very reassuring which was very much appreciated.
It was strange arriving home without BJ. I had nothing I absolutely had to do. AJ ate her own dinner and of course needs no assistance, so I felt lost for a while. I have to admit it didn’t take me long to sink into the couch and not move. I received a text message to say BJ was asleep and seemed at ease with someone else getting him off to bed so I could rest easy for the night.
Being in the habit of never knowing what time I will have to get up to BJ, I went to bed early. I had a blissful night’s sleep and didn’t wake until it was actually light. I woke at one stage in the night wondering if BJ was sleeping or up watching tv but there was little I could do.
I was elated to receive a message this morning saying BJ had slept ‘till 5am.
It took me a long time to come to terms with sending BJ to respite but I think it is an important skill for BJ too. He needs to get used to others taking care of some of his needs for the future. From all reports he found going to respite easier than I found sending him. A great sign of independence and confidence.
We had a lovely relaxed weekend. BJ’s need to be on the go has its positives as you see from our usual weekends and travels, BUT it was definitely nice to have a slower pace for one weekend.
If you haven’t taken the step towards seeking respite, I suggest you take small steps. Day visits and holiday care is a great way to gain confidence and for staff to get to know your child. Overnight stays can follow when everyone is comfortable with it. It certainly took me a long time but I think it is important for all the family.
In the meantime, maybe someone can come up with a different name for respite.
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Maria Refalo says
This was so beautifully written, and I am surprised you haven’t used “respite’ before this( over night anyway).
We call our respite” castle hill house”… I don’t feel the ned to say respite either.Annies been going to respite since she was about 8, and has always surprised us. She could have the worst unsettled week at home, and then at “castle hill house” she sleeps well, eats well, doesent fuss… the list goes on. I really think just like any other one of our children , they actually need their own space and own time, away from the family… just as much as we need ours, and yes I still feel lost sometimes when shes there but its a good “lost” I rest and I can sit on the lounge and not have to get up, I can sleep in if I am able to- not very often… but at least lay in bed a lot longer peacefully.We also occasionally do something that isn’t always possible or difficult with Annie. They always have a great time, talk about where they’d like to go on their outing, often its the beach, to an accessible walking track there and just sit and enjoy the view after their walk.Or the movies, bowling or shopping, or darling harbour… circus, the list goes on.One of my friends said this to me.”Look at it like its a sleep over for them, just like our other kids are able to do- their time, with friends they have just made or friends from a while ago” Just a part of growing up, and learning they CAN GET ALONG WITHOUT US… even though when we see each other its a very happy moment, but also that we have all had some”me time” … that we all desperately need.
Love your page Julie… iTS Fantastic and such a help to so many, Thankyou, big hello to BJ.
Thanks Maria. It was a hard step for me to take but it has happened. I am glad that you have had Annie in respite for a long while. I think it is easier on everyone that way. It is good for everyone if it is a good place. Take care and thanks Julie
Thanks so much for this wonderful piece. We checked out respite options for our son, LB, a few years ago, and were thoroughly put off. I don’t think the person we were talking to wanted us to participate, either. He kept saying they were ‘chock a block’ etc. And I also hate the word. I also have an idea that there aren’t good options in the Byron Bay region, but this piece inspires me to think about looking into it again. I agree it’s incredibly important for our children to learn that they can ‘get along without us’ – although just for a night is good for now! LB sounds similar to BJ in that he needs to be ‘on the go’ all the time, and also hates long lunches! If anyone hears of good respite for Autism around the Byron/Tweed/Gold Coast region I would love to be informed. Best wishes, Laura
I hope you got my comment – please let me know if you didn’t.
Hi Laura, It is so awful when you take that difficult first step and then get put off. I hope someone can share a good respite house in your area as it sounds like it would benefit your whole family. Surely Queensland has something near the NSW border. Keep looking, asking and generally persisting. I know it is tiring but the benefit will hopefully outweigh the initial effort. Take care. Julie
Thank you for this wonderful story. I found myself nodding my head to many of your emotions and feelings. We have just begun sending Gabriella to a “respite” house and I am panicking about leaving her (she is only 10minutes away). At the moment it’s just 2-3 hour visits with the hope to build up to overnight stays.
I too greatly dislike the word “respite” it is so negative and makes me feel like my daughter must be so difficult I don’t want her around and I feel like less of a mum – in that my daughter must be so difficult I need respite. But it’s not that at all. Yes our daughter has disabilities which do make life challenging, but she is in many ways an easy child to be with, a real pleasure to spend time with and so easy to love. But as you said, it’s about our children also learning to accept life is going to be full of carers, not just mum and dad. I think Gabriella now being 13 years old is at a stage where she can learn this and accept it without feeling home sick. I’ve also noticed at school she wants to spend time with peers and this will give her some socializing time like a typical 13 year old.
Congratulations for taking the step with BJ and also for such a great story and website. I’m getting lot’s of ideas from here – thank you!! We are heading off to Putt Planet tomorrow.
Hi Coby, Thanks for the feedback and for sharing your story. I am so glad that you are trialling respite with your daughter. It is good for everyone if it is a good place that provides stimulation and fun. I hope you had a good time at Putt Planet? Take care and thanks for sharing. Julie