“Holidays are not vacations. Try not to confuse the two.”
This advice was passed along to us at some point way too late in our parenting adventures. We are still trying to absorb this wisdom.
We have been there. The over-scheduled holidays. The overstimulating holidays. The attempting to act like all is ‘normal’ holidays. The ‘we-really-need-this-so-we-are-going-to-try-this-even-if-it-kills-us’ holidays. The ‘ready-to-go-home-after-two-days’ holidays.
Every kid loves to go to a theme park, right? Every kid loves to play at the beach, right? Every kid loves the excitement of a road trip, right? I did when I was a kid. They were some of the best memories of my life. I want our children to have those memories too. And so goes the record in my head.
Until there you are, too many miles down a highway with a child in full meltdown in a car. Kicking, screaming, throwing things. You stop at the first stop you see – a place advertising a garden café…and then you see this garden doesn’t have grass but little stones. Your 12-year old fully dysregulated child picks up hands full of them and you really don’t know what to do as they are sailing through the air while other customers stare at your horrible parenting. Or there’s the time you stop because driving is no longer safe and your little one is walking with purpose along the side of a highway, refusing to get back into the car, for miles with your husband slowly creeping the car forward behind you both. Or the time when he threw a big rock so hard outside a 400-year old cottage your extended family members had kindly rented, hitting your husband in the face and you had to run off after your child to make sure he didn’t get lost in this new place while your husband was still bleeding. Or the time he went missing at a cliffside theatre and you found him, just moments before they called the helicopter search team. He was in your car blasting music and rocking – he had found a quite space and was using calming techniques you had taught. People wondered why he was not punished that day that scores of people were looking for him. You were just glad he was alive and you let him see you were proud of him for finding a calm space.
These are just a few snapshots. For those raising children with Foetal Alcohol Spectrum Disorders, most of us have these stories. FASD makes it hard for our little ones to adapt to new places, to process all the alien input and to understand the new expectations. They become overloaded by sensory input and anxieties to a point where they simply can’t do it anymore. And then wham. We have liftoff. Or for some, it’s shutdown.
I keep remembering a work trip I took to Japan. I was traveling by train, but something was wrong with my ticket. I got stopped at a gate and there was no one there who could answer my question – none of the signs were understandable to me. No one in authority spoke English. It was all completely confusing and overwhelming. The only thing that kept me from panicking was one person I knew who just waited for me on the other side of the gate. He said he wasn’t going anywhere until he knew I was okay. He didn’t care if he missed his train. He reassured me it would be okay. I remember that day and I try to be like that for my son when I know he’s having trouble. To let him know I am there and waiting for him, to reassure him this moment will pass, we’ll find a way forward.
Children with FASD need structure. They need to know what to expect. One year, long before our son’s FASD diagnosis, there was a blackboard in one of the cottages we rented. Our little one started writing a timetable each day in chalk, just as if we were in school. He was showing us what he needed, just as he always has done. We didn’t get it. We didn’t listen to his needs. We had a truly dangerous car trip one day during that holiday, where he kicked so hard he almost made contact with his dad’s head as he was driving. Now we print out pictures of where we are going. We show him on maps. We go back to the same place. We will never repeat the disaster of the trip where we stayed in five different places so we could do touristy things that we thought would be fun. How wrong we were. Of course, cash-strapped, we were only too aware that we were paying hundreds of pounds for the disaster that was unfolding. That fuelled our stress, his stress, the negative cycle. We needed to learn to slow down. To keep it simple. To take cues from our son with FASD.
We have finally learned just how anxious our son gets in a car. Now that he has the words to tell us, it’s humbling. No wonder he was melting down in the cars. I would be too if every unexpected swerve, every beep, every light, every car heightened my danger alert, if even the direction of the windscreen wipers mattered to me. This year, we are trying something new. Every other family member has already driven to our destination at the tip of Cornwall. Tomorrow, my son and I will take the train.
It will either be the best idea ever or it will be a disaster.
Ever hopeful, I am counting on a win.
We also for the first have one of his younger friends staying with us, so hopefully it will help to have someone to play with. Her mum is staying with us too, someone who ‘gets’ our son and his needs.
I also did something a bit bonkers. I have chopped my hair and it’s dyed bright pink and blue. I was too hot on too many London commutes. I thought this might be good for a bit of fun for the holidays. But walking through town today I realised there is a side benefit. People are staring at me and my iridescent hair and ignoring my son’s long hair and skirt for once. Interesting indeed.
This morning, while the first pictures started appearing on social media of dad, brother and friends at the beaches in Cornwall, we were sitting in a familiar local café in our hometown. I was trying to ignore the side glances that my son didn’t notice. I was thankful that at least he was eating, even if it was a burger at 10.00 am with cheese on it, which he’s not supposed to have due to a milk protein allergy (I weighed the slight tummy upset versus the protein boost and took a chance). And as we chatted, the anxieties started pouring out. He doesn’t want to go. He wants to stay here. He’s been to this one town in Cornwall too many times. There are no shops there. It’s boring. He needs to stay in another place. The last place he stayed in Cornwall with his school had ants in it. He’s never staying there again. We need a schedule. How are we getting there? Did Dad bring his stuff too? Am I sure? How are we getting to the train station? That’s too long on a train. Let’s just stay here. What about the dog? What if she’s lonely. And on. And on. And on.
Honestly, what I really need is a vacation. With umbrellas in icy cool drinks. The sound of nothing but lapping water at the pool’s edge. Sleeping late. Going nowhere. Just silence. Peace. I really need a break. I admit that.
But I am still glad for a holiday. I know there will be moments of exhilaration by the sea. I know that forbidden Cornish ice cream will bring a huge smile to our son’s face and that might just make up for the sensory discomfort of sand between toes and gooey sun cream (and tummy upsets from too much milk). I pray (even as I am not the praying type) that this time we will have fun. And maybe, just maybe as a family we will relax. I am hoping I come back replenished.
What I will never do is blame our son if this goes wrong. Because it will not be his fault.
He has already expressed his worries and his concerns. There is no doubt, this holiday is about me, about us, our needs and our desires. It is simply not fair to blame him if he is unable to cope. I will give him every tool I know how to help him, but this…this is on me if it goes pear-shaped.
And if it works as we hope it will, it will be because he has excelled himself with immense effort and increasing skill at self-regulation. If we do indeed have a good holiday it will be due to the understanding of all around us, to the structure we have put in place to give him the best chance to succeed. It’s not just going to ‘happen’. This new approach has been in the planning phases for two years, since our last holiday and all the work we have done over many slow days trying to build up to a place where he is able to state his needs and suggest strategies to cope. It’s a work in progress.
And if you see someone on a train or a plane or in a cafe or convenience station who is struggling. Just keep walking. And give them all a little smile of encouragement.
But if the mum has bright blue and pink hair, please stop and say hi.
Check out this Oregon Behavior Consultation video for tips on preparing for holidays for those with FASD. They also have a holiday planning worksheet. It’s focused on winter holidays, but the advice is golden for any time of the year.