Skiing, Steam Punk and a view to the future

Happy New Year and I hope you all had a great Christmas without too much stress!

Ours was relatively quiet, with both Son1 and Youngest away skiing with their special school in the run up to the big day. We were more than half-expecting to have to fly out to Italy to collect Youngest after a few days and, indeed, he did Skype me gloomily after the first day, reporting that he didn't like skiing and couldn't stand up, his joints hurt and he felt faint. Sure enough, that evening, the phone rang. It was one of the party leaders assuring us that he was fine, and they would be trying their best to persuade him back onto the nursery slope the next day.

We held our breath until we heard back from Youngest the next evening. And what a change! Thanks to the experience and knowledge they have of him and their patience with reluctant participants, he had got the hang of it and was, he said, "Almost ready for the slopes". By the end of the trip he was, "Better than Mr Faasen", the school's 12 foot rugby-playing PE teacher, whose care of Youngest last year made a huge difference to him.

Son1, by contrast, set off to a flying start, as expected, but after a mishap at dinner in which he ate a dessert that "may" have had nuts in (despite the party leaders telling the restaurant of a nut allergy sufferer), he ended up in the Casualty department on a drip with what appeared to be an allergic rash. He missed the next two days of skiing because he also came down with man flu and Skyped me to say he was "dying". In fairness, it must have been pretty bad for him to miss a physical activity or any sort.

Youngest , meanwhile was improving by the minute. His proudest moment, possibly of his entire life, was that he was better than his big brother at a sport. When I said to him that there were lots of things he was better than his brother at he replied, tellingly, "Yes, but nothing he cares about."

Just because they have autism, of course, does not mean they are unaffected by sibling rivalry and it's always been especially hard for Youngest , who is just 18 month younger but a smaller build and with more physical difficulties than Son1.

We had already pre-warned them that due to the cost of the ski trip and its accompanying kit costs, not to expect too many expensive Christmas presents. I was delighted however, that their favourite gifts were far from expensive. Son1 was thrilled with his Ukelele (he aims to be a musician) and Youngest , well, check out the photo and you can see what he liked best - the Steam Punk goggles.

As our boys grow older, the results of the hard work that we have put in to help them with their ASD difficulties and the fact that they have now been at their specialist school for five years, with the therapy, social skills and counselling that that has brought, are becoming increasingly evident. That's not to say that their difficulties have passed - in fact Youngest has emerging medical problems and Son1's issues are still underlying, but moderated by maturity and learning. As with many Aspergic adolescents, it is sometimes difficult to tell what is ASD and what is just being a teenager.

But gone are the days of abject fear about what will become of them because, barring the unexpected that you can never prepare for, they are on the right trajectory. But I am aware that now, more than ever, they need us both to remain strong and reliable so that they can develop as they need to in a secure environment. Stability and consistency are vitally important, whatever age they are and they need to know that whatever happens, they have a solid base to retreat to.

It is here that the difference will continue to be evident, I believe. Where most 'normal' young people will fly the nest and be off their parents' hands in the main, for ours, this transition will need to be carefully managed and our job will not be over when they reach adulthood. Our roles will change, as they did when the boys made the transition to adolescence, but we will never be able to 'look away'. We have found that that is when disaster strikes.

I don't plan to be ever-physically present as they move into manhood- we will have to give them space to find out about life for themselves. However, I have heard too many cases of young men with ASD running into extreme difficulty and worse as they try to find their place in the adult world. We will just need to be alert and sensitive to what they need, for as long as they need us and to make sure that we know, as much as possible, how they are coping. The problem is - as yet -  I have no idea how to accomplish this.

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Tania Tirraoro

Founder, Co-Director at Special Needs Jungle

Founder of Special Needs Jungle. (She/Her) Parent of two young adults with autism. New grandma. Tania, who is autistic, is a leading SEND advisor, working with the Special Education Consortium, Ofsted, and Whole School SEND. She is also an Advisory Board member of the Royal Holloway, University of London Centre of Gene and Cell Therapy and an Editorial Board member of Springer Nature Gene Therapy journal.
Tania is an experienced broadcast and print journalist & author. She also runs a PR, web & social media consultancy, SocialOro Media.
Tania is a rare disease & chronic pain patient advocate with Ehlers Danlos syndrome.

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