Having scored two weeks off work over Easter this year, my husband and I decided to take our two boys 3 and 5 on a ten day holiday to Kings Beach, Caloundra. A lovely friend had put us on to a fantastic apartment block right on the water…we could walk to the beach, the park, restaurants, shops….awesome location.
Both the boys were very excited about going to our Holiday House. Our older son with SPD has a fantastic memory, and as we have taken him on similar holidays he talked non stop the whole couple of hours drive there…remember this, remember that….
We were blessed with perfect weather the whole time. After a not so hot and quite wet summer, we were being treated with heavenly Autumn weather! Unfortunately holidays also spell changes to routine, new sensations, strange places.
Our first trip to the beach – all of a minutes walk away – started off well enough. As soon as we hit the sand off came his thongs, he didn’t like the sensation of the sand rubbing between his feet and the rubber. No problem though, walking on the sand in bare feet suited him fine. Both he and his little brother love the water, and “wave jumping” became our new sport. All went well until A’s long board shorts started to irritate his legs, “my legs are itching!” he was yelling out in distress. Trying to placate him I said “it’s ok, its just the sand and the water, your legs are okay”. He got more and more upset, to the point where I asked him if he wanted to get out….”NOOOOO….I’m still wave jumping!”
He stuck it out, got passed it and lasted at least another 20 minutes. My husband commented to me that if he had have been trying to do something else, something he wasn’t so keen on doing, he may not have been so determined to get through it! As soon as he’d had enough and headed out of the water, he became aware of the sand clinging to his damp legs. He started scratching again. Then just said, “my legs have no power left…I can’t walk”.
I had just started reading a popular book about SPD and had taken notice of the part I’d read about fatigue and lethargy, and that it can onset very quickly and is quite genuine. The trouble is, he is over 20kg’s. It’s not that easy to carry him these days! His dad carried him back to the unit, where he had to get straight in the bath to get all the sand off him…..through his tears and obvious discomfort as he tore at his legs he said “can we do that again tomorrow?”
We went to the beach everyday, to satisfy the boys need for “wave jumping”. The sand became less of an issue, and we managed to get him to walk back to the unit by making it a race against him and me against his brother and dad. One day the water was full of little bits of sea weed…. I noticed this as soon as we entered the water, and looked up at his dad….how were we going to handle this one? The sea weed brushed his legs for the first time and he started to get upset….I grabbed some of it in my hand to show him, “see? its just a little plant, like leaves or grass. It can’t hurt you.” My husband then threw some at me, making light of it. Again I gave him an out and asked him if he wanted to stay in or get out. No, he was staying. It was clearly stressing him, and to be frank, I didn’t care much for it either, slimy fingers touching my legs, sticking to my arms, and tiny pieces of it getting down my swimmers!
I actually started thinking that this was all going pretty well. He had managed to overcome his sensory difficulties to persist at something he was enjoying. Armed with these victories and feeling pretty confident we decided to go to Australia Zoo – big open plan zoo, lots of walking, but they had recently introduced an African exhibit, and both our boys are bits of Madagascar and Lion King fans.
We took both our strollers, slathered everyone in sunscreen and set off. It all started off well. A was pushing his empty stroller, something we had noticed helps him when we go out for walks. If he’s not pushing the empty stroller its harder to get him to walk, then when he does get tired or “out of power” he can hop in for a rest – he even had his photo taken with a baby crocodile.
On my further reading I discovered that this pulling or pushing heavy loads is quite theraputic for SPD kids. I’m not sure how much longer this will work for though, the stroller is only rated to 18kg, and already he looks far too big for it. We have also had looks from strangers who I’m sure are thinking, “why on earth is that boy in a stroller? he must be at least 5 or 6!” Well, it’s a darn side easier than carrying him!
A little way along, he wanted to get in the stroller, and all of a sudden said he felt sick, clutching his tummy. His little brother had been battling a tummy bug for a couple of weeks and it seemed as though it had finally caught up with A. Groaning inwardly I thought, why today? Why now? He didn’t want to pat the koala, feed the elephants or kangaroos, or have his photo taken with the cockatoo. At least little brother was having a good time! By now he was whining, we offered him drinks, ice cream, anything to make him happy. Nothing, he didn’t want anything. Finally he fell asleep in the pram while E was enjoying his pony ride, much to our relief, and woke up in time for the Crocodile Show, just as his brother nodded off. He maintains he had a good day, but feeling sick combined with battling sensory issues definately impaired his experience.
After a couple of quiet days spent wave jumping at the beach, pushing strollers to the park and exploring the rocks, we took a drive to the hinterland to visit a dairy farm. While we waited for the tour to start, everything was starting to bother A. His brother was annoying him, he wouldn’t come look at the calves, or the cute cow toys on display. Finally in desperation I motioned for daddy to take E for a walk so I could try to get him to calm down. At this point I was thinking, “Oh well, we’ve just done $36! this is not happening today….” I tried joint compressions, something I hadn’t done for ages, and it seemed to help, then bear hugs, then more compressions. By this stage we had several other families staring at us. Sometimes I wish I had a sign I could hang above A. Something to say “My son has a complex neurological condition. This means he has trouble interpreting and coping with sensory input. He is currently experiencing a sensory overload; a meltdown, and I am doing my best to help him. He is not being naughty.”
Finally he started to relax, just as the tour was about to start. He wouldn’t get his photo taken with the person dressed up in the cow suit like all the other kids did, or pat the cows, we had to carry him most of the time but we got through to the end of the tour, and his long awaited milk tasting!
Overall we all had a great holiday, we learnt together that pushing empty strollers helps him go for walks without asking to be carried or losing the power in his legs. We learnt that making something a race or competition helps to get it done. And we learnt that the desire to keep doing something really fun, helps you overcome the sensory distress it is causing. He teaches us something every day.
Having a child with SPD or any other special need makes everyday things a little bit more stressful, more time consuming. A’s issues are nothing compared with what some other kids and their families face. He doesn’t have cancer. It does mean that we are forever looking out for potential hazards, trying to stay one step ahead to anticipate the problems and refer to some days as “egg shell days” where we all feel like we are walking on egg shells trying not to set him off! The trouble with SPD is that something that wasn’t an issue yesterday, is today, but might not be tomorrow…..and that’s half the fun.