My lovely friend Toni first introduced me to this idea of us all needing a tribe - people who help you feel like you belong, can teach you and encourage you and are the friends and colleagues you rely on for support and fun. Just like all of us, Jamie wants and needs friends and like-minded people to interact with. Unlike us though, they are sometimes hard to come by.
As I talk about in my book A Positive Result, we were fortunate to have found our ‘two angels’ who became firm members of Jamie's tribe when he was small. A fantastic speech therapist called Geraldine and the then newly qualified SN teacher, Helena. You can read about how they formed part of Jamie’s first tribe in the book. I’m delighted to say that Helena is still very much part of our lives and even when we moved across the world to Singapore she made time to come visit us. All three of my children were a part of her and her husband Kevin’s wedding and her family has become like family to us. We joined tribes I guess you could say! I lost touch with Geraldine but I do plan to reach out to her as I believe she’s still practising and I’d like to tell her how her commitment and positivity meant so much to me and Jamie in those early days. Maybe we could even work with her again.
It’s easy to assume that once your child starts school and then as they move in to teenage years that this kind of help is no longer needed. But it’s vital to keep your child’s tribe going, you just need to adapt and figure out what and who it is your child needs in their tribe. Whether it’s a mentor at a local youth group, a therapist that is helping with behaviour issues or a buddy who they want to spend time with. Our young adults benefit from having this input as much - if not more so - as they grow older.
When we moved to Singapore we said goodbye to many people and our whole support network and having to reestablish connections for Jamie has been really hard. But we’ve done it and now, as we prepare to up sticks and move back ‘home’ to England I am reflecting on his tribe here. It took us a while to find them and we’ve had to push quite a lot. The key to it is the same as ever - finding people who WANT to work with us and support Jamie. I believe anyone you consider has got to see your child or young adult as having potential and want to help them achieve it. But also, as Jamie has got older and become his own person, we've had to consider his own needs, wants and opinions too. And believe me, they're very strong!
Some of the early members of his tribe were actually friends of my eldest Son, Sam. Oscar, Tom, Ben, Charlie and the rest of the gang would show up to our house full of chat and Jamie would love it when they were all round and would firmly ensconce himself in to the Xbox playing, joke telling, noisy banter that would emanate from wherever they were. Once he was done (which was always way before they were) he would declare he’d had enough of them and was off to listen to One Direction - to much ribbing from the guys. This kind of interaction gave Jamie such a buzz and like all of us, fed his need to be liked. When Sam left for university, many of his friends did too and that left a huge Sam shaped hole in Jamie’s life. Oscar, who stayed on to do national service, stepped up and would message me every now and then when he was free and ask if he could take Jamie - and Jamie’s best mate Harry - out for a burger. This would give Jamie such a big kick. It’s amazing how something this simple can make such a difference.
There were also two young men who answered a plea for help on Facebook. When Harry’s mum Sue and I began to look at how to fill the boys day now that they were being homeschooled we asked the local community if anyone knew of a buddy system here in Singapore, or had any older teens that would be willing to buddy up with Jamie and Harry. An amazing woman called Tammy responded that her twin teens would love to help and in walked Toby and Nicholas. We met up with them at home first and got to know them, Tammy and all of their 10 siblings! After that, once a month or so Toby and Nic would meet up with the boys and just hang out - this could be playing football in the local gardens, going bowling or the cinema; the stuff that the kids their age should be doing. But without the support of buddy’s like Toby, Nic and Oscar, Jamie and Harry couldn’t do this.
Friends like this, from their peer group, have been vital and are definitely part of the tribe.
When we decided to home school Jamie here in Singapore it was a HUGE step. I honestly would rather have eaten my own head but we’d reached a stage where it was really our only option. So Sue and I got together and found an amazing tutor to work with Jamie and Harry. Mrs B tuned in to their style of learning very early on. She quickly saw how to motivate them, how to encourage them, how to push them without scaring them. Mrs B joined our tribe too.
As I talk about in my previous post Races, medals and new friends, Jamie joined the Special Olympics swim training team shortly after we moved to Singapore. He has been a part of other elements of Special Olympics Singapore like bowling and basketball too and having shown a real aptitude for sports we realised this was a great outlet for him. It was during this time that I was introduced to a fantastic guy called Fergal who was working here as a sports physio. I met up with Fergal and asked if he'd be interested in working with Jamie to help him build up his strength and stamina through sports physio work.
Fergal is one of those people you find in life that not only says yes to something, they say yes and then some. He has become much more than Jamie’s physio. He is his mentor, coach and friend. He pushes him hard physically at the gym and in training sessions, but he also pushes him in other ways too. He encourages him to be independent - insisting he turns up to gym in the appropriate kit (anyone that knows Jamie knows he wants to wear ‘smart shirts’ every day and trying to get him in to anything else is a battle), makes him order his own drink at the sports bar afterwards (reminding him that a protein smoothie is way better choice than a fizzy drink) and talks to him like the young adult he is.
Fergal also sets Jamie challenges - like The Spartan Race - which you can read more about in a later blog. Fergal has become a firm member of Jamie’s tribe. He gets it!
I've also found that once you start making connections like this, other things slot in place.
Fergal introduced us to DJ and all the great guys at The Ring Boxing Community, a boxing club in Singapore that has opened it’s arms to Jamie and Harry and made them part of their tribe. DJ, one of the trainers has included them as part of the Big Brother programme which has been set up to introduce boxing to those who may not have a chance to get involved. Every week the boys go along for their training session and work their butts off. They are being taught proper skills by qualified trainers and made them feel like they're fully part of the community. They challenge them every week and don’t let them get away with not giving their best. As they say at The Ring, “we motivate you and make sure you leave The Ring feeling like a champion.” The boys always do. They also always invite them to events they hold, making them feel super important taking photographs of them and generally just including them in everything. Again, helping them feel they belong.
It was Jamie’s love - and aptitude - for music that brought David in to our lives. Jamie previously learnt to play drums with a fantastic drumming teacher in the UK and has a very natural rhythm. Here, before David, we'd had some awful experiences with various supposed music teachers - including one particularly ignorant idiot who actually couldn’t sit next to Jamie (I think he thought it was catching!) and asked me “if he (nodding at Jamie like he was an alien) was going to be alright for him to play drums?” So when someone mentioned her daughter had a great guitar teacher I asked her if I could have his number as Jamie had been messing around on his sisters guitar pretending to be Niall Horan for a while.
In walked David who from the get-go could see Jamie’s love of music was part of his being and that he was naturally musical. He has patiently sat with him listening to him sing and play One Direction songs over and over and encouraged his musicality through this. He realised that there was more to teaching Jamie than chords and reading music. In fact, he gave up on that pretty quickly when he could see Jamie was struggling with getting his fingers in the right position and together they ‘feel’ their way through each lesson. Between them they sound great and it doesn’t matter if Jamie isn’t following note perfect as he is more often than not spot on with tempo, words and rhythm. A very talented musician himself, as David says "the rest will come." I love to hear them jamming together and Jamie’s ego and happiness levels go through the roof after every lesson.
Lastly, but most importantly for Jamie, he has finally found a good friend who basically became his fellow tribe leader. He has had friends in the past of course, but with Harry it has been different. Previously he would hang out with friends and then after a while either one of them would get fed up and want to go do their own thing. Or I'd have forced a play date, trip to bowling etc and Jamie and the 'friend' just weren't up for it. With Jamie and Harry they like the same things (One Direction, girls, dancing, singing and Xbox not necessarily in that order), they enjoy each others company and want to hang out all the time. Their friendship has developed in to a true and meaningful relationship for them both.
This is something that I know other parents of children with additional needs wonder will ever happen. It has for Jamie through luck as much as anything else and this is an area I'd like to look more in to when we move back to the UK. How do we help our young adults access safe social situations and make friends they can relate to? Watch this space...
Wherever you are in the world, whatever stage your child is at, think about your and your child's tribe and how the people in it fulfil certain roles in your life. If there are gaps, find ways to fill them. You’ll be surprised how quickly your tribe grows.
Please get in touch and tell me about your tribe and why they count in your child’s s life.
The day I launched my website for A Positive Result - which was also World Down syndrome day - I asked friends and family to ask their friends and family to ask their friends and family etc, etc. to wear odd socks.
Today as the book is published I wanted to share all the pictures with you.
Wearing odd socks or 'Lots of Socks' on World Down Syndrome Day is a way to raise awareness. The idea being that people will notice your socks don't match or are whacky and ask why. You tell them it's because you are raising awareness for Down syndrome.
I was absolutely overwhelmed with the response I got to my request. From Scotland to Spain, England to Oz, and even my friends in Bhutan joined in - that's in the Himalayas people! Let's spread the word further. I'd love to add to these pics on the 21st of every month so please do share your pictures with me.
The pets in odd socks were particularly cute. As were the babies, the school kids, the train drivers, the students at uni, the Nan's and Grandad's the sports players, the family groups, the couples, the singles. Thank you to each and every one of you.
Please email me your pics at firstname.lastname@example.org if you have more to share. And spread the word, let's see if we can get pics from all across the globe!
#apositiveresult #downsyndromeawareness #rockyoursocks #extra21 #booksaboutdownsyndrome #lotsofsocks
"…having sat in another waiting area we were shown into the apparently highly regarded consultant’s room. A strong set man in a white coat who held himself with great authority and the bedside manner of a block of ice. He looked at our notes and explained to us in a really patronising manner that is was unlikely our baby would be able to live independently. He told us he would be unlikely to speak properly, would not go to mainstream school, may never be toilet trained and would need a lot of care and attention. That we were to expect to look after him for the rest of our lives.
We left the office in shock…"
Extract from A Positive Result, Joanne Pasquale
Tell me your story...
One of the reasons I decided to finally publish A Positive Result was to show the world that having Down syndrome isn’t like that hideous consultant described to us almost 18 years ago. On this part of the website, the APR blog, I want to celebrate all the triumphs, cheer on all the efforts and show off all that is wonderful about having Down syndrome. Please, get involved by sending me your stories and I’ll include all those I can. Whether it’s your daughter's first step, your son’s first word or your grandchild winning first place, let’s show the world what our kids can do... I’ll start.
Races, medals and new friends
Thanks to the support of The British Club and with the help of our good friend Steve we have also been very fortunate to find a fantastic coach who has been training Jamie, along with his best friend Harry. Alain Chan who runs Total Swimming is a former Paralympics coach and with his help the boys were able to enter their very first big meet. In Melbourne!
Having been in touch with the Down Syndrome Swimming Association I noticed there was a championship coming and thought I would email just to ask for more info. After all, we were closer to Australia than we’d ever be! The organiser, a lady called Libby could not have been more welcoming. Before we knew it, the boys had places as ‘international guests’ and Harry’s mum Sue and I were booking flights to Melbourne. It really was a bit of a whirlwind decision.
The competition, which took place over a weekend in September 2017, featured swimmers ranging in age from 12 to 25 and included other international guests from Portugal and New Zealand. Some of those who competed had won medals including at the Special Olympics, National and International Championships – so the boys faced some stiff competition. Having said that, there were young people of varying abilities and each race was run as if they were all competing for gold.
The spirit of the competition really helped them and they – as well as Sue and I – had a great time. That weekend we saw just what our young people can achieve, and the difference positivity, encouragement, strong coaching and commitment can make.
I only wish I could have taken along that so-called ‘highly-regarded consultant’ I’d seen all those years ago, not to mention those involved in trying to screen out Down syndrome.
Thank you to the fantastic people we met at Down Syndrome Swimming Australia, to Libby and her team of organisers and of course the athletes and new friends who all made us feel so welcome. Here’s to the next time!