Life As Alice Blog

Down Syndrome

7 honest and easy ways to parent an older child with Down Syndrome

'Wooooahhhh there, stop growing up' I keep saying to Kyd as he does more and more independently but really, this is what the last 12 years of hard graft have been building up to. This is what he needs to be doing to build up to real life and this whole growing up thing has been 12 years in the making.

He is 13 in September, puberty has well and truly set in and this independence lark is in full flow. It is a very scary thing for parents to have to deal with and consider but it is probably the most important thing you need to do for them as a parent. Preparation is the key to gliding into teenage years and adulthood like a catwalk model down a runway and so I have a few pointers that I've picked up along the way. My main advice though, the sooner you start, the easier it is.

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1 - Throw away the Cotton Wool

This is a tough one for most parents as it is so easy to keep your baby wrapped up in cotton wool and safe from the outside world for longer than is necessary. Without you they're in danger and if they're in danger you aren't doing your job as a parent properly... right? Wrong! Please start to unwrap them from your warm and comfy cotton wool touch asap, it's not healthy for any of you. Slowly does it. You don't have to kick them out and cut all ties but allowing them to do their own hair, pick their own clothes or even make their own lunch is a huge start. The sooner you start the easier it is, Kyd has been making his own decisions for years and with guidance and trial and error he's becoming better at this life stuff than me... scarily. Obviously the dangerous things like cooking, crossing roads etc will need more time to develop but they'll get there eventually. If you have confidence in them, they'll have confidence in themselves.

3 - Celebrate their individuality

Yes, they HAVE Down Syndrome but they are NOT Down Syndrome. People with Down Syndrome may have similar traits as you may know but they aren't clones of each other and are as individual as you and me. If you as parents pigeon hole them into a category then so will society. Celebrate their individuality by encouraging hobbies etc and getting them to be an individual and celebrate their individuality themselves. It is a key factor in making them world ready and can really help them make friends in the future. Kyd has more friends than I do and mostly gained at the Madejski Stadium, home of Reading FC, in which he has had a season ticket for since the age of 4. He has a very particular taste in music and goes to festivals and gigs too, this has proven to be a hit with others who said they have learnt so much more about Down Syndrome from seeing him at these things than ever before and his confidence is boosted yet again... job done. 

6 - Sense of humour is a must

Scientists have proven in the past that those with a good sense of humour live longer and happier lives. Also they've proven to have better work and love lives too. So start teaching them jokes and watching comedies now, call it a parenting bonus if you will.

2 - Let them make their own mistakes

I know it's hard to watch them do something wrong but it is the only way we as humans learn. People who have Down Syndrome will often do the same thing wrong several times and take a little longer to learn. BUT. With a bit of guidance they often become the master of the task in hand and the satisfaction of doing it themselves makes it so much more of an achievement. So sit on those hands and let them get on with it. Obviously close guidance will be needed for things that may lead to danger but with your expert help and teaching, they'll be  taking part in master chef before you know it. Kyd being able to make me a simple breakfast in bed is my biggest achievement in life so far, for completely selfish reasons of course but who doesn't love breakfast in bed?!

4- Integration is the key to the 'real' world

It is a really good thing that you've got them into a local support group, they need to know that there are people similar to them and their needs. On a similar note though, if you stick to special needs groups they will feel uncomfortable outside that group. It's a bit like cooking, you need the right amount of the right ingredients to make a good cake. Integration into the community, whether it be via playgroups, hobbies or even just taking them to the local park, gets them understanding different views, opinions and ways of living. It is what makes a community and what builds their confidence and independence. It also helps others in the community learn more about Down Syndrome too, so it's win:win. As adults they need to be able to communicate with people in the 'real' world and to do that successfully and independently they need to have the skills to do so... that is your job to teach them.

5 - Don't be a PC warrior 

They won't thank you for it. You need to prepare them for snarky comments and funny looks. We aren't going to eliminate ignorance completely even if we shout really loud. Life is too short, correct ignorance with a smile, everybody is ignorant until they're taught otherwise. You can call them all you like in your head but starting WW3 is pointless and will make your child feel worse than they did to start with. Kyd shrugs it off and finds something about them to laugh about. It's not the right way to deal with idiots but it works.

7 - Encourage them to dress the part

Kids and teenagers are all about how they look and with all the social media around now it is even more important to help them fit in. My biggest pet hate about parents who have children with special needs, well parents in general, is when they look like they've just given up all hope of integration and dress them like they've rubbed them in honey and let them run through a charity shop. Our children have enough to deal with in society without handing the mean kids of this world insults on a plate. Our kids are the glimmer of light for the next generation, they will lead the way with this generation's thinking and if you hand the ignorant folk of the world something on a plate to bully them about, you're not helping. With places like Primark catering for everyone's budget now, there is no need to resort to the undesirable and unfashionable options. Not saying charity shops are a no go, I love a charity shop find, but style it out and make them feel and look a million dollars and you will see their confidence grow. With confidence grows opportunities, with opportunities grows greater independence. It might sound superficial but that is life, kids are mean if you don't fit in.