If you’ve been following me for a while, you’ll definitely be familiar with the Sparkles charity – a charity that offers early intervention for children with Down Syndrome in order to give them the best shot at life. We’re currently fund raising for Sparkles, if you’d like to support the cause, you can purchase raffle tickets here.
For us, Sparkles has given us much more than just extra physiotherapy and speech and language therapy for Saajan, they have uplifted us when we’ve felt deflated or when progress seemed slow – Debbie is always so quick to champion Saajan’s victories and redirect our attention to what he HAS achieved. It feels like we’re all part of a very loving family and we are so eternally grateful to Debbie for always celebrating Saajan so hard. She’s full of love, passion, patience and wisdom – her love for what she does shines through at every single session. Debbie often reminds us that although Saajan’s physical development may seem slow, he’s doing so well with non verbal communication.
Equally Saajan always has a great time at speech and language with Mel and Louise – it may seem odd that he attends speech and language therapy at such a young age (from when he was 10 months) when he’s unable to talk but early intervention is key as children with Down syndrome will usually experience challenges with communication. The speech and language therapy focuses on helping the child to talk, but also covers the essential skills needed to communicate effectively through music, songs, turn taking, phonics and tongue control exercise.
The best bit? Both Debbie and Mel always welcome Arjun to our sessions who loves to get involved and tells me how proud he is of his brother afterwards!
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Debbie has kindly taken the time to share her wisdom with you all – I hope it helps new parents who may have recently given birth to a child with Down Syndrome or delayed development.
Hello, my name is Debbie Beneke and I am a children’s physiotherapist who has a special interest in working with children with Downs syndrome. In fact, I currently have over 150 contact sessions per year with babies and children with Downs syndrome. Harps has very kindly asked me to contribute to her site. At first, I felt a bit overwhelmed about where I would start, and what I would say. I have decided to start at the very beginning.
As I am a physiotherapist I guess I am going to be talking about movement, particularly gross motor movement. This is the movement of the larger muscles of your body, which enable you to physically move around your environment.
BUT
Child development is not broken down into areas. It is not linear, it does not happen in isolation in a straight line of progression!
Actually, it looks more like this.
At the same time that your baby is learning to move, your baby is also learning to manage their communication systems, their auditory systems and their sensory systems. This is important to remember because if, for example, your child is faced with a loss of opportunity to be experiencing movement because they have had cardiac surgery, or they have been unwell, this does not mean that their development grinds to a complete halt. It is often the case that children who have had missed opportunities for gross motor development will have really flourished on their fine motor skills or their non-verbal communication skills.
The very first control that your baby will need to learn is head control. The head is the largest and heaviest part of the body and it rules and defines all movement. Your baby will not be able to move themselves up into a sitting position if they cannot control their head. Once your baby has head control, they can then look to gain control of their trunk, shoulder girdle and pelvis. Slowly we will see your child lifting their head, lifting their legs and then starting to roll over. These are all really, really important skills that start to strengthen up the trunk and pelvic muscles, which are all key for sitting. Rolling over onto their tummy, and pushing up onto outstretched arms are key for strengthening the shoulder girdle and head and trunk control in readiness for crawling. It is always worthwhile spending time on mastering floor skills. There is no rush. Once your child can sit with good head control, they can start to engage independently with the world around them. Play is how your child will learn about their immediate environment. A child will find it difficult to engage with their surroundings if they are propped in a standing position. Whereas functional sitting, where they can reach out from their firm base of support for toys and make choices and explore, is far more beneficial for exploring and learning.
If you build a good foundation of floor skills, your child’s ability to move from the floor all the way up to standing on their two tiny feet, will be much easier for them to achieve.
If you understand that learning to move is a process of building blocks then the very next and single most important thing to do is to throw out the milestone chart. This serves no purpose whatsoever to you as a parent. It might be helpful to researchers and health care professionals but it is of limited value to you. The most important action as a parent is to get access to good advice, find out what your child’s very next building block is, and how you can offer opportunities to practice that. It is not a race to get up into walking. If your child is not walking by a year, it is not a reflection on your parenting skills. In fact, children who are placed in standing, before they are ready to stand, often take longer to achieve walking. Children who spend time on the floor building up their shoulder girdle control, their trunk control, their hip stability and go on to crawl and to engage in their environment, spend far less time mastering their walking skills.
In the first year, the overarching goal is to consolidate the floor skills which will allow your child to access their exciting, noisy and colourful surroundings. Ideally, the very first big goal on the horizon is crawling, not standing up and walking.
Drawing on my years of experience I am confident your beautiful baby will bring laughter, joy, connection and significant contribution. As the parent of your baby you are the expert. Enjoy learning alongside your baby and most importantly, celebrate with them. Celebrate their successes. Remember, it is not a race. When a milestone is achieved, do not look immediately to the next one.
Pause.
Celebrate.
Give time to consolidate and master.
Enjoy the journey, I know that I do.
Debbie Beneke BSc.MSc.MCSP
Specialist Children’s Physiotherapist
We’re currently fund raising for Sparkles, if you’d like to support the cause, you can purchase raffle tickets here.
How far you have all come! You are doing such brilliant work, and good luck with the fundraising.