Luis is growing everyday, maybe not at the the same rate of other children in his own age physically and mentally but he is still growing. For us this means that we have to think more and more about what he is doing all the time.
As he moves around the house he is now taller and can reach more grab at more and moving things out of his way is becoming more challenging. He has recently worked out he can open the fridge and is looking at what he can take.
His daily support has not changed as we are looking after his care needs the same as before. He is no longer a baby or a toddler that can be put in one spot whilst we change his clothes, or give him a shower, it is not as simple as it was in the past.
Growing stronger
Luis wants to move around more or pulls away more regularly, it feels like he is always trying to escape, is it a game or does he have more important things to do and we are just holding him back? I am not sure on the answer but one thing is certain, he is growing stronger so you can imagine the challenge is changing.
We can feel that he has an increasing need for independence but is not able to fulfil them as he likes. It can be frustrating both for him and us at home, as we would love to let him do what he likes but as I once said, he needs someone to help him do the things he thinks he wants to do. In other words supporting him to do what is both safe and reasonable given his circumstances.
Challenging
I am trying not to duplicate anything that I mentioned in past posts, but I am trying emphasise how the challenge is increasing all the time. I mentioned some of these above, but also trying to understand what he wants and calm his frustration. If he is hurt or in pain it is a process of elimination as he cannot directly tell us what happened, and he can continue to cry even when being consoled.
He is now refusing simple things he didn't previously like brushing his teeth, or getting ready. His reaction is sometimes playful like pulling away and laughing at other times he hits out as though he is annoyed. These simple things that took a couple minutes now take much longer.
Currently he likes the tablet, and we need to
get creative to remove it from his line of sight and mind, as he can be addicted to it. He shows more frustration if we turn it off and we immediately need to involve him in something else to keep him occupied. This can be involving everyone in hide and seek or chasing after him and playfully throwing him and Antonio onto the sofa, but their energy outlasts ours.
Others feeling the same
We have a job keeping up with Luis, he is definitely always doing something or on the move between the living room and kitchen. I feel like once he is up we are constantly working or moving from one thing to the next, and can only rest once he is asleep. We recently attended some functions with other parents who also have children with additional needs and I know this may sound terrible but I was slightly relived to see others in a similar position to us.
Running after their children and following them around everywhere they went, with no time for resting, keeping an eye on everything they are doing. Finally, I met others who not only understand exactly what I am talking about but I saw it for myself. Nothing like the power of right here right now.
In Conclusion
We are not sure what the future holds for Luis as the cases recorded for Nascimento x-linked intellectual disability are very few. I am working to try and uncover more information about it and get in contact with others who may have some insight for us, which I will also share on another post.
I know and appreciate that no two diagnosis are the same but it would be good to have a possible glimpse of what the future has in store. That aside we are optimistic, we know that Luis despite how some of his behaviour can seem, whether signs of frustration or hitting out, he is just a growing boy who is happy and wants to be understood.
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