This is Noah’s new bed. You might look at it and think its a cool bed cos lets face it, all 5 year olds want a bed with steps! Maybe you’ve looked at them before or your son or daughter would like one. Maybe it’s not for you. I know I always wanted to sleep up high, I was so jealous of friends and cousins who had bunk beds. It always seemed like such an adventure!
But for us, this is so much more then just a new bed. Its an achievement, another reason to celebrate. We do a lot of partying in our house!!
One of the characteristics of Down Syndrome is low muscle tone which means the muscles in Noah’s middle are not as strong as they should be. He had to work very hard to train these core muscles so that he could learn to crawl, sit, stand, walk, run and jump.
To train these muscles, Noah was attending Physiotherapy from 7 months old. Sit ups, stretches, reaching games, obstacle courses, structured swimming sessions, all just in a days work! We had fun but a lot of Noah’s playtime was “structured” play which essentially means everything had a goal, every game set up to achieve some physical milestone. For a while, he wore straps on his short toddler legs to help him to walk upright, maintain posture and take pressure off his ankles. I sometimes felt guilty, I was so focused on these milestones that I sometimes forgot he is a baby, a small boy who deserves to just enjoy plodding around and exploring his surroundings for the heck of it, no goals, no tests, just fun.
As part of this process, it took time for Noah to walk independently up a step. He wanted to be carried, hold a hand or crawl up. He still tends to come down staircases on his bum because it is easier for him. He doesn’t like surfaces with gaps or empty spaces, it throws him off and he feels uncomfortable.
But his sister has a high bed and he has been gazing longingly up at it for some time now. Her ladder is straight up to the bed so he finds it too hard to climb it, its like the holy grail, the only place in the house he desperately wants to explore but he can’t quite get there! Of course she’s thrilled her little brother has not made it up there yet, a place where her treasures are safe from his grasp!
So for many people this is just a bed, albeit a pretty cool one! But for my little boy, this is a symbol of achievement and pride. He is only 5 and the extent of how far he has come is all wrapped up in this new adventure playroom! I cannot describe the look on his face when he came home to find his new room. The excitement, pride and pure thrill of it. He raced up those steps like an expert and even more impressive coming down is a doddle!
Noah is on a journey that in some ways are unique to him but it does not mean that he cant achieve or enjoy all the wonders his sister does. He might take the longer way around and we often take a few adventure side paths along the way but he attacks his journey with determination, strength and humour. I love these moments that seem so small but are actually so huge when we look back at how we got here. I will never underestimate him, this little dude is capable of reaching serious heights!
I love being his mum.