More Than Words

What is speech language therapy and how does it help children with Down syndrome? We chatted to speech language therapist Shannon Hennig about the importance of communication, the lack of funding for those who need it and the relief provided by our partner charity, UpsideDowns.

Well, firstly, the role shouldn’t really be called a speech language therapist; it should be called a communication therapist. Our job is to make sure children with Down syndrome have the means to communicate their wants and needs, thoughts and questions with the people in their lives. Communicating effectively is the foundation upon which language, speech and literacy are based. 

Verbal communication doesn’t come easy to many kids with Down syndrome. Their jaws can be a bit smaller than other people’s so it’s harder for them to pronounce things clearly. Their speech can be difficult to understand and that can change the feedback from their language partners; people may pretend to understand when they don’t or ask them too many questions. All of this means that they don’t get as many opportunities to practise and learn as other kids. 

Kids with Down syndrome also struggle with grammar and linguistics. When formulating a sentence, they may start with the content and work backwards. For example, they might say, “Assembly! Morning! Principal! Call my name!” instead of saying, “The principal called my name in assembly this morning.” Often words are out of order or key details are left out.

If a kid with Down syndrome doesn’t have access to speech language therapy, the impact can be huge. Without it, their family may not be able to tell if their child is upset, sick, or if they were bullied. It also puts pressure on the child’s school. If teachers don’t have effective ways to communicate with a child with Down syndrome, it can disrupt the learning process and falsely lower expectations. 

Denying a child with Down syndrome access to speech language therapy can also lead to behavioural challenges. I have some young men who are really angry and frustrated. Some people think that this just goes with the territory, which simply isn’t true. When they develop more effective ways to express themselves and connect with people, they are calmer and happier. A lot of it comes down to communication challenges. Even more importantly, with proper support, children can reach their linguistic potential. Many more young people can learn to read, write, and express themselves with access to speech language therapy and assistive technology. 

Unfortunately, we don’t have as good a public support system in New Zealand as people might think. We have wonderful professionals but there aren’t enough of them and they are spread way too thinly. While around 7-15% of kids in New Zealand have learning support needs, we get funding for maybe 1-2%. It’s a hidden unmet need. You often have to prove that your child is struggling more than other children to get funding. 

Over the past decade, there have been lots of funding cuts and situations where specialist support hasn’t been able to keep up with demand. Some speech therapists have left the field because the workload is so high but we are a committed bunch of people who love seeing our clients make progress. We put up with a lot because we know the value. We are ever hopeful that things can improve. 

There really aren’t enough stories out there about just how big a difference speech language therapy can make. Overworked families may not have the time or energy to tell them. Kids with Down Syndrome often need support to learn to tell their stories. Those on the frontlines may not be allowed to share their stories for privacy reasons or workplace limitations. So, how does the public find out these great stories? These are wonderful, smart kids who are doing great things. 

What UpsideDowns does is really incredible. Given the severe lack of funding in New Zealand, every little bit helps. Speech language therapy really is a key support for these families; it keeps the children engaged, it empowers them, and makes sure they are a part of the world around them. Again, all you have to do is talk to the parents, or their teachers to see how much of a difference it makes at all ages. Those stories are out there. Let’s hope we hear some more of them soon!

Story by Telford Mills. Image provided by UpsideDowns. Learn more about Shannon’s work here.

If you’re just learning about the brilliant work UpsideDowns do to empower kids with Down syndrome, check them out here and back them with 1% of your income on the regular now by hitting that huge blue button, thank you!