Living with developmental delay

I thought it was probably time for a Rohan update, but I wanted to talk a little bit about how our lives are, surrounding his developmental delay.

I've spoken before about how we know that this is part of his syndrome, but most of the time I try not and focus on it and compare to where he "should" be, but in fact try and focus on what he can do and how he is developing in his own way and in his own time. Which is fine, like most aspects of his care and about him, at home when we're in our bubble, but stepping outside of that comfort zone is hard.

I don't even have to actually step outside of my home to feel the pangs of jealously and comparison, all I have to do is have a quick scroll through my social media to see babies born around a similar time to Rohan, walking around, saying their first words and generally becoming full blown toddlers. There are even babies born way after Rohan who are now further ahead in development than he is. I know I shouldn't let it, but it hurts me. I'm not saying that the parents of these children shouldn't share their milestones and everyday goings on, they have every right, but it still doesn't stop the feeling of unfairness. That old emotion coming back to get me.

I know that all children develop in different ways, and that hopefully he will walk and talk (but the fact that we even have to say hopefully, when normally you don't even think about the fact they might not be able to) eventually, and some may even look at Rohan's development and compare that to their own children, it's natural I think, but it's not really talked about. It's hard to admit that he's behind, or that there's something causing these delays. All leading back to the fact he's different, things are harder and not straightforward.

So here we are, he's now 16 months but still around the age of 7-8 months developmentally. He has low muscle tone which means his body has to work so much harder to support itself. I actually forget how old he is often because when people ask his age I just give a vague answer of "just over a year" when I don't feel like going into it, or there's not really time. I'm not sure how long I can keep this up for to be honest, but I've still not perfected our story or how much to say and when. I don't really mind telling people, it's just I feel awkward. He does still look babyish to me, but his face is starting to show different, more grown up features so it's going to become obvious soon that he's not really only one.

For complete openess here is what he can do. He can roll back to front, and sometimes front to back (unless he gets his arm stuck). He can stay sitting for long periods of time, but we have to put him in sitting position, his legs are usually straight and pretty rigid, and he spends a lot of this time counter balancing himself. He can use both his arms to play in this position though, and will use a good pincer grip and transfer items between his hands. He's started to learn that he can drop and throw objects, and will look for them after he's dropped them. He uses his arms to communicate a lot of the time what he wants, by reaching, gesturing and lunging. He can pick objects up and move them aside to get to what he wants. He's starting to weight bear more whereas before if you tried to stand him up his legs would just go up. When he's on his front he can prop himself up on his elbows and use his hands to play, he likes to open flaps and turn pages in books. He can feed himself with his bottle and now his sippy cup, he also likes to use other objects such as his stacking cups to 'drink' out of. He likes to make our hands clap together, but hasn't worked out how to clap his own, even though recently I've seen movements that look like the start of it and waving.

We've been having weekly play and physio sessions where we are working on the transition between sitting and lying, and back again. He's doing pretty well at turning himself from sitting with his legs straight, to side sitting, with his legs bent to the side which then can lead to him kneeling, and supporting himself with his arms. He's struggling a little bit with the other way, which is to get up from side lying and push himself up with his arms. The thing is, is I can't remember the "normal" way of doing this. I can't remember how Theo got himself into sitting, then to lying and then to crawling. It's like it all happened too fast, but Rohan is in slow motion. He gets so tired too, his little body having to work twice as hard, and he's stubborn. He doesn't like to be put in positions he doesn't want to be in. It's hard to see him like this, and I think we all want to see him on the move.

I just don't think I even anticipated the impact of him being developmentally delayed. I mean day to day it doesn't cause us many problems, it's just hard work. It's hard because we have to practice with him everyday, hard because he gets frustrated and stuck and I feel like we have to move him room to room with us and just plonk him down when we need to get stuff done (with toys!)
It's hard emotionally too, to constantly compare, or think how nice it would be for Theo to be able to play with him a little more, to see them sitting and playing or Rohan toddling after Theo in the garden. It's hard to have to try and cover it up, or try and explain, or answer questions. I also think it's just a constant daily reminder that he has this syndrome, and that he's different. And whilst I love so many things about Rohan that make him him, I just wish he wasn't so delayed. I hate to say that because I can't change it and it's not his fault, but it's the way I feel a lot of the time.

I do celebrate and get so excited when he learns something new, and I know each milestone for us will be such a big occasion. But for now I guess I just have to embrace the extended baby phase for a little longer. I know we'll get there in our own way and time, and for now Rohan can continue distracting everyone from his lack of movement by his lovely smile.


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