Tania: Today we'd like to introduce you to a new columnist, although followers of SEND blogs will already be familiar with her Premeditations blog. MrBoosMum, as she is known, has already written for us before and we are delighted that she is joining our SNJ team as a regular columnist.
She's kicking off with some handy tips for if you're planning to visit one of the many big disability-related exhibitions...
5 Tips On Attending Disability Exhibitions
I never really had a misspent youth. When my friends were bunking off school to go to music festivals I declined. It’s not that I don’t like music or having fun, but I quickly became that person who is relied on to look after everyone else when they enjoyed themselves a bit too much. That was not always that much fun. I spent a few years in my late teens and twenties trying to make up for those lost years, but now I don’t have the time or money to misspend anything because I have a little boy with cerebral palsy. So instead of festivals, I get excited by disability exhibitions. I am not even partly joking. They’re great!
But they are also overwhelming. The scale and sheer volume of equipment and information available at events like the free Kidz Exhibitions for children and young adults with disabilities and special needs, their carers and professionals that take place at various points in the country across the year is just incredible. If you have a young relative with additional needs, you need to go to one of these shows.
They include free seminars on crucial and difficult issues like sleeping (a MAJOR preoccupation of mine), moving and handling (my second big preoccupation), continence, SEND law and education. They are attended by therapy centres, schools, and manufacturers of so many of the bits of kit upon which our children rely. Charities that can help fund equipment, short breaks and therapies are also there in droves.
To get the most out of such events though, takes a bit of forethought. The first time I went to one, I spent most of my time wandering aimlessly round and round in circles and picking up a rainforest of leaflets. I suffered from total information overload and when I got back I realised that some of the most pressing things I wanted to find out, I'd completely forgotten about.
So here are my top five tips going to a disability exhibition. Some, I’m sure you’ll have thought of already if you're a regular at these types of events, but I honestly hadn't thought of most of them before I attended my first one. I'm pretty sure that I'll also have forgotten things, so please do comment and share your own advice and experience below. We parents and carers of disabled young people are good at preparation and crowdsourcing, after all.
- Should you take your child? This may seem an obvious question, but how you answer it will have a real impact on your experience of the event. You may not have a choice, of course, but if you do, what to do? Well, if you want to attend any workshops or seminars, then thinking about if your child would be happy and comfortable in a crowded and sometimes hot room for an hour at time is a must. (Mine wouldn’t.) On the other hand, if you want to try out equipment rather than just look at it (I usually do), you really need your child there.
- Make a list of priorities and questions. With or without your child, it is unlikely you will be able to look round everything on show or if you do, it’s unlikely that you will take it all in. Scouring the event website beforehand to see who will be there is a must and making a list of, say, 3-5 companies or charities you want to see or sessions you want to attend really helps make it all more manageable. And I always find it useful to jot down any questions I want to ask in advance because I can never remember them when I am there.
- Set up stand visits. The people on stands at events like this usually work flat out all day and making appointments in advance is not usually possible. But if you know there is someone you want to talk to or a particular piece of equipment you want to try, talking to them in advance and providing measurements or weight information, if relevant, can be very helpful and mean that you will get more out of your chat with them if they are expecting you.
- Ask if your therapists are going. These events have become like high school reunions for us. Half of the cast of thousands who look after Boo seems to go to our local one. Knowing which of your child’s or relative’s team might be going in advance of the event can be really useful. If there’s a particular issue you are trying to problem solve, then going together to a particular stand can be incredibly helpful. In our case, Boo’s therapists have sometimes got reps to send quotes on the basis of trying out equipment at such an event. This has saved weeks or months on rep visits and ordering times.
- Expect the unexpected. Plans are great, but as we all know only too well, sometimes you just have to throw the plan out of the window. I know lots of people who have had to leave early because their children found the events too much. I know plenty of parents who have felt the same, too. And don’t plan to the extent that you might miss things you don’t know exist. Some of the most important bits of kit in Boo’s life were unexpected discoveries at an event like this. I thought there was nothing my tireless researches couldn’t have uncovered. But I was dead wrong.
This is one of the reasons why these events are so useful. Even sat in front of your computer or staring at your phone into the wee small hours, you will not be able to access so much information so easily. You can see mythical items of equipment you dream of for your child and work out if they will fit into your living room. You can compare beds, or toileting aids with their competitors on the next stand. You can talk to people and ask all those daft questions that we all have but otherwise might not ask.
Best of all, you will be in a room where difference is the norm, where no one stares and everyone gets it. It feels like bunking off to me.
- Have a care for the carers working 100-hour weeks - December 8, 2017
- The failings that made our son’s special education EHCP transfer a nightmare - July 8, 2016
- How a grandma got a clothing giant to “adapt” and help families with disabled children - February 12, 2016