Teenager Jordan Fairham is approaching adulthood. Here his mum, Tracy, outlines her hopes and fears as he approaches leaving college…
“When we were told just after he was born that our son had Down’s syndrome, I can honestly say the bottom dropped out of our world. Why? Because it wasn’t what we expected and it wasn’t what we wanted. Or so we thought!
We were given so much information to process regarding what he would or wouldn’t achieve, but nothing that really prepares you for the actuality of living with and bringing up a child with Down’s syndrome. Children with Down’s syndrome are all very individual, but I can honestly say that the older he gets the easier it gets.
Jordan is 17 years old. He is currently at Greenacres College in Barnsley studying catering. He is a really happy, contented, funny, caring, mischievous, thoroughly annoying teenage boy. He loves his Xbox, computer, mobile phone, watching movies, playing football, going out with his friends, socialising in general and most importantly eating!
He has quite poor speech and uses both words and signs to communicate. We are currently working with his speech therapist and piloting some software on an iPhone to use to aid his communication. He will tell anyone that listens he is an 18 year old man not boy. He wants a girlfriend like Selena Gomez and wants to go to the Hollywood Arts High School like the cast of Victorious. But the next big thing he wants to do is learn to drive. This is so difficult to explain to him as he doesn’t understand why it isn’t allowed.
The worry associated with having a child with Down’s syndrome dissipates and changes as they get older. The focus on general health issues, eating etc fade and you begin to worry about adulthood and the future. The appointments with paediatricians and other consultants (hearing, eyes, orthopaedic, orthodontic, etc) are still an everyday part of life and we still have to fight to receive certain services, especially speech therapy.
But the most terrifying and uncertain thing for us at present, is what happens to them when they become an adult. It feels like no other child has ever reached this milestone and I am at present struggling to keep my head above water; trying to find information regarding the options open to him.
We are struggling with where to turn? Who can give me the answers? What is on offer? What is suitable? These questions and more are very difficult to get answered. We are also encountering negative comments regarding health care for him – for example “you really don’t want to be going into adult services”, or “we must sort this before he moves to adult services”. These do not fill me with great confidence and the concern is he will be lost within the mix.
The question this raises is why care appears only really a priority for them whilst they are 0–18 and then suddenly they become one of the general mass. By now most 17 year olds are self-sufficient (well you know what I mean), they arrange to meet friends (they may need the odd taxi service), they have a part time job (they may need the odd top up), they go to college, they belong to football teams, they socialise, they learn to drive, they live life and literally just eat and sleep at home. But for Jordan to achieve these things means we have to be there at every step, planning, arranging and organising.
Most events require you to take them, stay with them and then fetch them home. Don’t get me wrong we don’t mind (my social life is sorted due to Jordan) but it can have an impact on your other children who either end up coming along or end up losing out on your time due to your commitments to the child with Down’s syndrome.
We are lucky in that Jordan’s brothers are younger than him (15 & 11) and are happy to participate in most things he does. Jordan still needs assistance with self-care skills, he can brush his teeth but needs help to do this correctly, things like zips & laces can be tricky, and whilst he loves food he is unable to break it down sufficiently so it has to be cut up small to ensure he does not choke. His brothers are amazing at helping him but I think we do expect a lot from them, without realising just how much we ask them to do.
Jordan has always been a ‘neat freak’ or I probably should say has always had some OCD tendencies but boy does this now help me. His bedroom is immaculate, DVD’s lined up in his cupboards, everything has a place, nothing is on any surfaces, he is always tidying up, my car is hovered to perfection every week and he is the recycling king of the family. If he hears the hoover he rushes to take it off me and take over (I am so not complaining, his brothers do not know what one is).
Overall we are incredibly lucky, he has no serious health issues, is laid back and happy with the occasional teenage strop and bit of backchat thrown in. He is no different in most ways to his brothers. He enjoys life to the full and whatever obstacle or bump in the road we cross we will overcome because he is the light of our lives and makes our family stronger and better. Finally, the best part of having a teenager with Down’s syndrome? Everything. As for what we wanted – well, sometimes these things are disguised and only appreciated with time.”