One of the characteristics of Down’s Syndrome is hypotonia. This is a medical term for “low muscle tone”. Which still doesn’t tell you a lot. If you google “what is low muscle tone?”, the results returned say things like “your baby will feel floppy”. For me, having not had Aidan yet, this seemed confusing – Aren’t all babies floppy? Isn’t that why you need to hold their heads? What does it actually mean?
Well, when Aidan was born, he lay all splayed out. I’m telling you, this boy looked seriously relaxed. I was quite envious, actually, of how chilled he seemed to be. He also didn’t move very much, save for some nose wriggles and blinks when the NICU machines around him would make an unexpected beeping noise. When I picked him up for cuddles, his whole tiny weight would press onto me, like a little limpet.
When my eldest was born, he came into the world holding his head up. He lay on me like a tiny ball of energy. In his buggy, his arms and legs would be furiously peddling. I wondered how he got so much energy to move, from the tiny amounts of milk he drank. As he grew, like any other parent, I got excited whenever a big milestone was hit. At six weeks he smiled. By twelve weeks he was laughing. He rolled over at four months old. He crawled at six. He walked at thirteen. He hit all of his motor milestones, as if he was a baby straight out of a text book. I had an app, called “the wonder weeks”. I used to look at it from time to time, to see what new thing he might start doing this week. He started doing it, pretty much bang on when the app said he might. As I said, a text book baby.
Aidan is a different story. For weeks, he looked like he wanted to smile but couldn’t quite get his face to comply. We had lovely intense eye smiles for weeks. I didn’t really think about it very much, I knew there might be a delay. From time to time, I’d get a bit sad and frustrated that I had this baby who took a long time to feed and needed a bit of extra attention, but I didn’t feel I was getting much back from. At times, I worried that maybe he wasn’t very happy or maybe he didn’t like me very much. Ridiculous, I know. Then at 12 weeks, one morning I looked into his moses basket and he grinned back at me. And when I say grinned back, I’m talking proper ear to ear, smile with your whole face, type of a grin. He hasn’t stopped smiling since.
I am a bit of a project person. My family always take the piss out of my need to be in control. My love of an excel spreadsheet. My to-do lists. What can I say, I’m a control freak and a chartered accountant. Excel is my safe place. Mock me if you like, it works! When Aidan was in hospital, I had an awful lot of time to sit and read about Down’s Syndrome. I learned that early intervention is key to helping children with Down’s Syndrome hit their mile stones, and that babies can benefit from early physiotherapy. So thus started my project to “help Aidan achieve”. I did wonder though, he’s a newborn – What exercise can you possibly do with a newborn?
Instead of waiting for NHS referrals, because I am quite impatient, I found a private physiotherapist who would come to the house and teach me some exercises I could do to help Aidan with his head control. I was surprised to learn there is quite a lot you can do with a newborn! But more on that later.
Every day, I would sit and do the exercises with Aidan. I thought that once we got started, because I’d been so proactive, I’d start to see results immediately! Of course, I didn’t. I would go to baby classes, and although I loved them and thought it was so important to treat Aidan like any other child, I would look at the other kids and feel a bit sad. They were starting to hold their head up. They were starting to push off with their feet. They were starting to kick and roll. Aidan just sort of lay there, staring at the lights and bubbles. Sure, he was taking it all in, but it stung that he was behind. I just saw what he couldn’t do.
I started to doubt myself a little. Was I doing enough physiotherapy with him? Was I just letting him lie on his back too much? How hard should I push him, just to see him do with his peers were doing weeks ago?
Then one day, when we were doing what felt like the gazillionth tummy time of the day, something amazing happened. Aidan lifted his head up to look at me. The elation I felt, was indescribable. I took pictures of him and sent them to my husband, my mum, my sister, my friends whatsapp chat. I sent them to anyone I thought might care, and said “look at Aidan! Look, he’s doing it!”. The day after that, he held his head up on his own for a few wobbly seconds at a time. Now he hardly needs any head support at all, and we’ve moved on to practicing sitting.
It was around then, that my mindset started to change. I tried my hardest to stop comparing him to the babies around me, or to his older brother. Don’t get me wrong, I still do it sometimes and it does still make me sad. But the feeling is fading into the background. I don’t feel like I’m failing him as much. I don’t worry about him falling behind as much. I just get on with it.
When my mindset started to change, I started to really look at Aidan. To look at what he was doing right now. Then I started to notice what I had been missing the whole time. It wasn’t about me, and what I was or wasn’t doing. It was about him, and how hard he works. His quiet, steely determination. I notice new things that he does, every single day. Things I never noticed with his brother, as all of these new things came so quickly. I have learned to shout about his successes and celebrate each tiny milestone. I’ve learned to enjoy the fact we get longer in each little phase, which passes so quickly with a “typical” baby. That is why Aidan is my baby in slow motion. It may take him longer, but he will get there in his own time. And as for me, well I get to enjoy the view for longer.
Me and The Little Fire 