Cheerleading and advocacy

Being the biggest cheerleader

Some of the most affirming moments of my life have been when others have encouraged me. A range of people – teachers, friends of my parents, uncles and aunts, friends of my own and people at church have praised my character, hard work or achievement – and it's made me realise the strength of a kind word of encouragement. My biggest cheerleader is, thankfully, my husband. He notices the small things and encourages me through the challenges of life.

While we also want our kids to have lots of cheerleaders in their lives, the loudest should always be us. Children thrive when they know they’re loved unconditionally and have someone always on their side encouraging them. Praising their character and hard work as much as things they’ve achieved.

It’s important that before we think about all the areas of development that we can help our children with, and how to best support them, most of all they just need to know we think they’re amazing. The world often only values achievements and excellence so for our children with differing abilities, being their cheerleader will give them the confidence to try new things and let them know that effort and character are things we value, not their ability.

Having said that, there is a balance to be had with how you cheerlead each of your children and how that works between siblings. So for us, we try and encourage all the children with their effort and character but sometimes Daniel’s achievements naturally result in a big cheer because of the amount of effort and time that has gone into it. This does mean that we will on occasion cheer things for him we probably won’t or certainly won’t with the same enthusiasm, for his brothers. For us we’ve balanced this by being honest with Rory, Daniel’s closest brother, about Down Syndrome and explaining how it’s harder for Daniel to say things or do things and how exciting it is when he can do these things. Hopefully this helps explain to him why sometimes we cheer “small things” with Daniel.

Being your child’s advocate

As well as encouragement there have been times when I've needed someone to help me by being my advocate – a voice standing up for me, a voice to ensure I'm being respected and listened to. The most obvious time in recent years has been when I've been in labour with our children. When my body was overcome with regular pain that stopped me from thinking or even talking (yes, it happened!) I needed Colin to step in and make sure my needs were being met and staff were aware of my wishes.

So if a grown adult needs cheerleaders and advocates in their life, how much more do children and particularly children with learning disabilities need people to praise them and ensure their needs are being met?

This was one of the first things I learnt as a mother when, at just a few hours old, a midwife who'd just come inside from a smoke, stuck her stinking finger in Daniel's mouth, declared he was lazy (because he wouldn't suck a smoky finger?!) and proceeded to tell me he wouldn't breastfeed. That woman is lucky she's never met me again – that was my first time to act as an advocate for Daniel and I failed. Everything in my body wanted to tell her she wasn't allowed to put her finger in his mouth, to leave him alone and not be rude. But I let her. After that I vowed to stand up for my child and be his voice when he couldn't.

We have to stand up for all our children until they can stand up for themselves. When you have a child with a learning disability, the parent’s advocacy role becomes much more important though. Your child will need you longer, maybe always, and they will have more needs and issues that need you to be informed about – be it health issues, access to education, development and therapy approaches.

There’s also the advocacy when interacting with the public – well meaning or not – although here I’m talking about advocating for them with their health, development and schooling.

Ways to be an effective advocate for your child:

1.       Key to effective advocacy is ensuring you follow the golden rule of special needs parenting (I made this up myself, it’s not ACTUALLY a rule!) – when interacting with people who can or should help, be assertive but not aggressive. Sometimes there’s a game to be played and being persistent and pleasant is key!

2.       Know what you’re going into and prepare accordingly. Before appointments, research a little so you’re better able to ask questions and understand. Preparation also means knowing what angle to take with certain professionals. One of Daniel’s doctors is particularly unpleasant to me, but is civil verging on pleasant with my husband so we try and get him to attend those appointments.

3.       Respect your child by telling them what's going on at appointments and ask staff to explain any tests they're doing, even if they're just babies. Don’t let people just do things TO them, remind them that your child is a person and staff need to get on board by working WITH them. Therapists tend to be really good at this, but sometimes doctors aren’t and need reminded!

4.       Communicate to staff anything particular you know about your child eg if they've a good vein for blood or there have been problems doing a test in the past, let the staff know to make things as easy for your child as possible.

5.       Keep asking questions to make sure you understand what’s going on and what the doctors, teachers or therapists are trying to achieve and in what timeframe. Ask what you should be doing to support them at home.

6.       Ensure your child has the relevant support around them to meet their developmental and educational needs. Be their voice if a speech therapy appointment hasn't come through or their education plan doesn't provide them with adequate assistant support. Chase appointments, read up on their condition, attend courses and do research. Having said that, you can’t do everything so this isn’t meant to be a guilt thing (don’t get me started on how long I left it to chase an overdue hearing test for Daniel knowing there was a deterioration and then when he finally got the appointment – he needed hearing aids!)

7.       Know your flaws and work to negate them. I research so much I know exactly what I’m looking for in some appointments but to jump straight in and tell the doctor what the NICE guidelines are doesn’t always get you off to a good start. I’m learning to trust that the doctor knows the condition best, and sometimes my specialist knowledge and research into its impact with DS means I can ask sensible questions first before suggesting the course of action I know will probably work best if the doctor doesn't get there themselves. Maybe you're overly agressive and assume the worst in everyone you interact with? 

 

Do you have any top tips on advocating for your child? Or any stories to share (good or bad)?