No, we’re not talking about moving house, although we did do this when Hope was 6 or 7 months old. We’re talking about physiotherapy.

Physiotherapy was actually the very first therapy we received, even before we had any NDIS funds. I never realized just how early all these therapies needed to begin. I guess in my mind I thought you don’t expect a newborn to get up and walk within their first few months of life so why do they need physiotherapy? I was never against it, but I guess I just really wasn’t sure what they would be working on or even what they would be able to get Hope to do.

The problem is that I wasn’t seeing the full picture. I was focusing on the right now. I didn’t understand initially that without working on the muscles that allow Hope to sit, crawl, stand or walk, even before she was able to do it,  meant it was going to take longer for her to learn. So initially we had just a few sessions perhaps once a month until we had the NDIS funds, but as soon as we were able to, Hope has been going to physio sessions weekly.

It hasn’t just been about working Hope’s muscles to hold her in a way that will allow her to be more mobile, it’s also been about teaching Hope the “right” way to use her muscles. When Hope first learnt to army crawl she would go from her sitting position, put her stomach on the floor then take her legs around each side, through the splits and towards the back. It was quite impressive to watch, and her flexibility astounded anyone who saw it. I even have a friend who thought it would be funny to try to do it themselves… it made a hilarious video because our hips just aren’t naturally that flexible especially when we get older. (Don’t worry Georgia, that video is safe with me.) For Hope, this was the easiest way to get herself where she wanted to be and while it wasn’t necessarily bad at the time, it meant she wasn’t using her muscles in the way she should and was not working towards being able to get herself to a position that would allow her to stand.

One of the first things that was done during our first weekly physiotherapy session was an assessment. The assessment allows the therapist to see exactly what a child is capable of and also helps to determine whether they are on track. I just have to say, it’s much easier to determine when a typical child is on track compared to a child with Down Syndrome. The reason being, that the age range for certain milestones varies so much. The below table shows some comparisons.

Developmental chart from National Down Syndrome Society (ndss.org)

Taking a look at that chart, a simple task to most of us, like sitting alone has a 4-month range typically, but with Down syndrome has a range of 24 months. Walking has a range of 3 years, compared with the typical range of 9 months. So by looking at that, I ask myself, “how on earth do we know how ‘on track’ we actually are? How does anyone?”. Well, that’s when we look to the physiotherapists, they are trained, they have worked with many different kids at many different stages. They know what they are talking about.

I guess it’s worth mentioning why it can take so long for our children with Down Syndrome to learn to do some of these things. It all comes down to muscle tone. Children with Down syndrome often have low muscle tone which can cause problems with their coordination and gait. Down Syndrome Australia defines low muscle tone as “where the length of a resting muscle is slightly longer than typical. This means that there are fewer points where the muscle fibres can attach and generate pull on the muscle. As a result, the muscle needs to go through a greater range of motion, requiring more energy to be used for movement, which in turn means a child will fatigue more quickly.” I’m no scientist or body expert, so I have just copied that straight from their resources. I would hate to share incorrect information. While I do not completely understand this, knowing it makes me realise just how important these physiotherapy sessions are.

For myself, I have been to a physiotherapist only a few times. When I have been, it’s been due to my muscles being either under or overworked and the physiotherapist has given me exercises to strengthen it. It’s the same with Hope. She goes to physiotherapy, they will work with her, and do exercises with her to help strengthen her muscles. I also know from my physiotherapy sessions that I always walk out feeling like I’ve had a bit of a workout. I’ve had to work hard, and I know Hope feels this too. She will often sleep very well after a therapy session. The difference between Hope’s physiotherapy and my own is that Hope gets to play with toys. They make it fun so she WANTS to work hard. They also get to know Hope, not just in what she can do, but her personality. They start to understand her in many ways so when she’s having a bad day and she’s not feeling as cooperative, they won’t push so hard, and on a day when she is happy, they will push that little bit more. When she looks like she’s getting tired, they’ll let her rest. Trying to push too hard at the wrong time, may just cause more issues in the future.

The physiotherapy sessions are very hands-on. Ben takes Hope to most of her sessions, and if you follow us on Facebook you would have seen recently some of his updates. We feel that it is super important for us as parents to be there and be doing as much as we can with Hope, not just sitting back and watching. Getting down and working with Hope then gives us the confidence to do things with her at home, knowing we are doing it right. For myself, during those first few months, I know I was scared to do things at home with her in case I did something wrong. After going to the sessions in place of Ben once or twice, I became more confident and now let Hope crawl all over me at home, and encourage her to work that little bit more without fear that I’m getting her to do something incorrectly. I’ll also crawl around with her, encouraging her every step of the way. Encouragement is so important.  I may need to buy myself some knee pads though, my knees aren’t really a fan of crawling around on the floor.

Now, I’ve let my fingers type away again, and I’ve gone way off track from what I had planned. So back up a bit and let’s go back to those assessments I mentioned. This was one of the first things done in the therapy sessions, and they are then done as required. We’re not sure if it’s a yearly thing, or if they do them when they have a birthday, or if it’s done when progress has been made to measure just how far a child has come. We had an assessment earlier this year, and before the assessment, we knew Hope was perhaps taking a little longer than we would have liked, but we thought she was doing well. When we received the results, from the assessment, it hit us hard. While Hope had been making steady progress, she was a little behind. But then again, was she behind? Because with those age ranges above, she was still well within the range. The thing is as parents, we always want our children to be keeping up with others, we want to know we are doing everything we can to help them achieve that. We know that’s going to be hard with Hope. But when we saw that she wasn’t as far ahead as we would have liked, we had to ask ourselves, was it our fault? Were we not doing enough at home? With both Ben and I working 5 days a week, the kids in daycare 3 days a week, and then having 2 sons to look after as well, putting in the time was difficult some days. We did what we could, and we knew we did. But if we weren’t doing enough, how were we going to be able to change it? In all honesty, Hope probably wasn’t behind as much as we had thought, and even our physio had explained that while she wasn’t doing things that perhaps we expected she would be doing, she had been showing steady progress, and that was worth celebrating. Fast forward a few months, and she has exceeded our expectations. We didn’t change anything in our processes at home, it was just like things started working for her and now I look back and I can laugh at how worried I was that we weren’t doing enough. Hope’s muscles obviously just needed that little bit of time.

So… that is our journey with physiotherapy and how it’s played out for us. Everyone has a different journey and I hope to be able to share some others one day. I do just have to mention before I finish, that the work done in a physiotherapy session is not enough, it’s something that we need to continue to work on at home. It’s like learning to play the piano. Sure you might learn by going to a lesson once a week but you’re going to learn much faster if you go home and practice. For Hope, going to physio once a week is great, but her muscles will strengthen much faster if she works them through the week. We actually speak with Hope’s daycare teachers and share from time to time what we are working on, so they can do it with Hope while she is there. Since the day we began working on standing with Hope, they have been doing it at daycare which has helped Hope gain more strength. If you ever have a child with Down syndrome, finding the right people that will work with you and your child is so important, and we have been lucky to find that in many ways.