Our journey to a family-centred early intervention experience

28 October 2021

I still remember the day we got the diagnosis of Williams syndrome like it was yesterday. My son Alex was three months’ old and recovering from open heart surgery.

At an appointment with the paediatrician I flagged that I thought something wasn’t quite right. My paediatrician was wonderful – she listened, observed and assessed. After spending two hours with us she agreed and sent us off for tests. This was a really scary time for our family. We were completely overwhelmed – we had NO idea what to do.

Being the person that I am, I became obsessed. I was in seeker mode. I was speaking to everyone I could and reading online into all hours of the night. I thought if I booked in for as many therapy sessions as possible, then everything would be ok. I don’t even remember if we had a specific goal in mind other than attending therapy.

Armed with a list of recommendations for therapists, I called around to get the first available appointment. My priority was to start ASAP. Everyone stressed that early intervention was critical, and I felt that sense of urgency. I thought early intervention was all about therapy and therapists. I thought that the more therapy sessions I could book in, the better.

At that time, we were following the therapist’s lead and the priorities that they identified. I wouldn’t question anything. I didn’t provide any direction. I didn’t think that was my role. I thought my role was to bring Alex to as many sessions as possible.

Two years after Alex was born we welcomed our third child, Anneliese, to the family. We now had three children under the age of three! All three used to attend the therapy sessions, not to participate but more out of necessity. It wasn’t a lot of fun for them. They were bored. I was overwhelmed. It was around this time that I realised, there must be a better way.

It came to a head during a particularly stressful experience with a speech therapist who asked me not to bring my other children to the sessions. She thought they were distracting. And the only homework we were given was for me to sit at a table for 20 minute blocks with an active three-year-old doing activities that would teach him to speak.

Can you imagine a small terrace home with one living space, and trying to get a three-year-old to sit quietly at a table for 20 minutes doing activities, whilst trying to make sure his one and four-year-old siblings didn’t distract him?

It was so stressful. And it wasn’t realistic either, not for our family anyway. I felt like a failure because Alex wasn’t able to sit at a table for 20 minutes, let alone complete the activities. I questioned my own abilities and my confidence plummeted. I knew this wasn’t sustainable for our family. Something had to change.

Through a local Facebook group for mums I heard about a local early intervention provider near me that offered not just therapy but parent education workshops, free playgroups and events for parents to connect.

I got in touch and was connected to a Key Worker. She worked with Alex and our family to support our goals. She was an occupational therapist but also able to work on Alex’s language goals and would consult with her colleagues when specific expertise was required. She valued our family and our situation. She was happy for Sammy and Anneliese to attend the sessions AND encouraged them to participate. The home activities always included all three children.

It was a lightbulb moment! This was the beginning of our family-centred early intervention experience.

Through our early intervention provider, I participated in the ‘by families for families’ Now and Next program, along with a group of other parents. I learned a lot both from the program and also from other families.

I recognised my role as an expert on my child and family. It gave me the confidence to step up and partner with professionals. By being more proactive and involved we achieved outcomes. I learned that by focusing on Alex’s strengths and interests we could fast track progress. I learned about not trying to do too much. I learned to slow down.

I came to understand that our children learn throughout their lives, and while early intervention was important, Alex wasn’t going to suffer if I stopped trying to achieve everything immediately. I learned that by focusing on our family as a whole, and everyone having their needs met, Alex would actually be better off as a result.

I recognised the skills and resources that we already have as a family and how we can achieve so much more, and be happier as a whole, if we tap into those resources. I learned that it wasn’t about doing more but being smart about how we include activities within our daily routines.

It opened my eyes to see therapy for what it was – about setting goals and using the expertise of our therapist to work towards them. I realised that I was trying to do so much without a clear picture of what we wanted to achieve. Now and Next gave me the tools to set a vision and achieve goals, to learn how to work with therapists, and how to voice my priorities.

Along the way, I have also learned that therapy sessions aren’t the be-all and end-all. We can be creative and do activities as a family that have a therapeutic benefit – like going to the playground and climbing the monkey bars or the rock-climbing wall – and that this is just as beneficial as sitting at a table playing with theraputty for hand strengthening. And a lot more fun, too!

These days, I often attend sessions with our therapists by myself to speak freely, discuss challenges and learn strategies that I can take home and implement without needing to take Alex to every session. This is working really well now that all three are at school. I now share what I have learned with other families as a peer worker.

We talk to our kids about Williams syndrome, what it means for Alex and for us as a family. We talk about Alex’s strengths, like how he knows everyone’s name at school or why he loves music, dancing and making people laugh. These are some of the positives of Williams syndrome. We also talk about how Alex finds it hard to manage his emotions when he gets angry or frustrated when he can’t do something with his hands. That is also Williams syndrome.

I realised that instead of excluding our other children, we can include them and that they can actually help us work towards our goals. The other day, Anneliese signed a card for a friend at school. She then added dots for Alex so he could sign the card, too. My other kids are learning great skills like cooperation and leadership. Anneliese was always amazing but she is a better person because of her involvement with Alex.

The benefit of all kids doing things together means the whole family are involved and support each other. It just comes naturally that everyone is involved. We know that parents know their children best, but I have learned to recognise that my other kids also know Alex well and that they have their own ideas and strategies on what can work.

There are some non-negotiables for our family now. When choosing new therapists they must be family-centred and think about what works for us as a whole. And they must want to work in partnership and listen to our family’s priorities.

I choose therapists who I can learn from, and who can teach me skills and strategies to implement at home and in the community. We specify the language that we use to make sure our whole team are on the same page.

Our family are our core team. Therapists are a valuable part of our team but not at the expense of our family. I have the confidence to recognise when a therapist isn’t the right fit for our family and make changes.

These are the things I want every family to know:

• Work with your therapy team to build your skills and knowledge
• Tell your child’s therapists what you need
• Be proactive to get the best value from therapy sessions
• Ask therapists why they are doing things so that it makes sense to you
• Think about what is going to make your life easier and how it can benefit your whole family
• Have clear goals to work towards and don’t try to do everything at once
• Look after yourself

And finally, believe in yourself. You are the one who can make the biggest difference in your child’s life – you’ve got this!

Stacey Touma

This story is from a speech Stacey made at the 2019 International Society of Early Intervention Conference hosted by Plumtree Children’s Services in NSW where Stacey worked as a peer worker.

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