Been some early starts here for the last few days. Thomas has decided that he is a big boy now and he gets up early to go to work, I mean play. So this morning has been his earliest by far, having been up and ready for the world by 5am! To add to this, Thomas, the big boy he now is, has dropped one nap, now averaging one nap a day. This is more difficult a transition for us parents I believe.
It all started with day light savings, surprise surprise, NOT! He used to sleep in till between 9 – 10am and it started with 8, 7, and here we are at 5am starts. As I sit here writing listening to some raging music, I mean nursery rhymes. I’m a cool mummy. Gotta get into Thomas’s hip music ya know, anyway, he is playing away in his sensory room talking away and bashing his items in the sensory room. I am aware that kiddos at Thomas’s age often do start getting up at appropriate, I mean ridiculously early times in the morning to officially start the day. This seems to be the norm. The difficulty lies in with a child with Thomas’s physical needs, being that he has cerebral palsy and low vision means filling the days are really tricky and all consuming. This means that Thomas is fully dependent on me to get him around. He cannot just decide he’s done playing and get up and move onto something else. It usually eventuates with him putting on a frustrated cry until he is picked up.
The other difficulty is of course, he is a big boy, a bigger boy as each day passes. I am so thankful he is gaining weight and growing, however, my back does not agree. It’s now at the point where he is not only heavier, but longer. This becomes all about finding smart ways to manoeuvre him around safely. I am finding it difficult scooping him up out of the cot and getting him in and out of the bath. Don’t get me started on getting him in the car seat! There are times, not often of course, when a foot or arm will get caught. This is because he cannot see where he is going and does not preempt moving it out of the way but also that when the offending arm or leg is caught, he does not have the strength to move it either. Tricky tricky!
For anybody new to this journey of raising a child with similar needs, it’s handy to know these things. I get a lot out of speaking with other parents who are years ahead to learn how they operate or work with difficult scenarios. Often I hear that as the child grows, the challenges remain but change over time. Thomas has some upcoming new challenges, one such challenge is getting a GTube. His surgical consultation is coming up in May so I wonder if he will be having the surgery within months! I have been told this will make life a little easier than having the NGtube. I see it as a new challenge. Something new to learn. Something that will become a normal part of everyday life with our Thomas. Not something that I ever planned for, but I’ve learnt that you can be as prepared as you can possibly be and that life will happen in any which way it pleases. There is only so much you can control in life. Well, that’s enough philosophy from me for the morning I think!
Post coming soon on Thomas’s exciting developmental changes!
Minding Thomas 