Oh man this is heavy. I am thankful Thomas can say some words but I grieve a lot for all the experiences I envisioned sharing with Thomas that I know will not happen for us. It is exactly as said, you are grieving a child you never lost. Just because I grieve does not affect the love I have for my son…ever.
As I sat on the bench in a public park the tears came easily. Watching little toddlers peddling trikes and mothers chatting to babies. Seeing pre-school children laughing and chatting as they wheeled around the water on their brightly coloured scooters.
It has been building for a while.
The night before last it was anger and hurt as a friend shared how her 14 month old was defiantly talking back when they were trying to get her to bed. I wanted to scream and say ‘but she understands! But she talks!’ Instead I mourned silently.
The world goes on while I grieve for a child I haven’t lost.
It is a very different pain to others. I know the pain of not having children. I know the pain of losing a yet-to-be-born baby. I know the pain of losing someone very close. I know that feeling of despair and anger…
It’s been pretty busy in our household lately. There are so many different focuses at the moment for Thomas.
Everyday is fairly routine but within that day there are lots of different things we need to work on. So many in fact that not everything gets seen to and I feel the pressure often due to this. I know that I cannot achieve everything I set out to achieve everyday but I like to feel that I’d like to try. If you catch me after a bad night with Thomas, those are especially harder days.
You see, most children develop and achieve certain milestones and move onto something else. With Thomas, I’ve learnt pretty abruptly to leave all those expectations behind. I stopped the plunket visits early on and reading typical child development books because none of that could apply to our situation anymore. I was living with no expectations except to just see how things develop. For the most part of a year, it was extremely tough watching Thomas having seizures, develop dystonia, struggle with feeding, reflux, eczema, and the crying. I’m seen a lot of that so much so that I’m de sensitised to it. I don’t freak out about seizures, unusual spasms or aggressive crying because it has become a norm for us. Don’t get me wrong, seeing all of that does upset me and make me feel powerless to help. But I have learnt that freaking out does not help the situation at the time. It is best to focus on comforting Thomas.
I get by most days by prioritising what needs to be done and what can wait another day. Like washing, that can definitely wait!
What I try to focus on with Thomas has often been the same for many months because Thomas needs more time to work on certain things. I’ll list those below with how each is going.
We have been working on using his new cause and effect switches from the Speech Language Therapist. He seems to have clicked onto this idea pretty quickly. He will press it and either listen for it or respond.
His sensory room that gives him independent playtime. He enjoys this but does not spend much time in it like he used to. He seems to be getting bored being on his back.
He has his standing frame to practice bearing weight on his legs and hips. Thomas is still a little weary and unsure during this. There is a lot of crying and fussing as he gets used to new things. He does seem to want to push on his legs and lift his head more which is pleasing.
A big focus is on feeding and keeping a track of how many mls water, formula, and solids and ensuring they are given timely. Thoma has been eating chunkier solids for about a week now which is an amazing development for him. He used to gag on chunkier foods but is now starting to chew a little first before swallowing. His cough reflex is strong so if food gets stuck, he seems to be able to clear it independently.
Working on cup feeding to encourage more taken from the cup instead of through the tube. He seems to tolerate more when he is thirsty and more alert. Usually he can tolerate anywhere from 20 – 60mls. He prefers water and nothing else. We have tried a few different liquids but he always enjoys the water. So refreshing!
I try to get Thomas on his tummy often during the day. He is enjoying being off his back and able to get his mouth to his hands easier this way.
Assisted rolling, side lying, sitting with bearing weight on arms and hands, and bringing hands midline continue to be a therapy focus. Depending on how Thomas is feeling, we can get varying results however in general I believe that Thomas is developing an awareness of what he should be doing and is trying to attempt certain physical maneuvers independently like trying to roll and swing his hips over. His head control is improving. He wants to lift his head and hold it up for longer periods and at times look around the room. He seems to be opening his hands more. His right side in general is tighter, therefore weaker than the left side.
Vision therapy such as assisted play with me. We use certain IPad apps, playing with light up toys or bright coloured toys. I have noticed him using his peripherals a lot to try and look out of the left side at people, or things. He is starting to show that he can hold his focus for maybe 2 seconds or follow an item but this fluctuates depending on how alert he is.
I have posted photos of Thomas on his Facebook page where he is often getting stuck in uncomfortable positions in his cot. To address this we have been using the Safe T Sleep to strap him safely in the middle of the cot. He transitioned straight away with no issues. The only problem now is that we only have 1 because they are not cheap and he’s been out of it for a day or so while it dries from a wash. Bit of a hassle but not the end of the world!
Thomas is still attending regular twice weekly Conductive Education sessions. These are going really well. He is still receiving individual sessions as these best address his needs.
No news on the Gastromy surgery. We are still waiting! Patiently…
Another focus that I am trying to be consistent with but sometimes let it slip is working on communication with Thomas. Things such as Objects of Reference that are small physical items or words I use repeatedly for certain situations so to help him learn associations and be prepared for certain things. At the moment it is letting him touch a nappy before a nappy change, touching a spoon before eating, or applying gentle pressure to his thighs when he is on his back to let him know he will be picked up or putting my hands under his arms and saying “up, up, up.” This way he knows he’ll be picked up. It seems to me that he is learning to remember these prompts because he will still and wait or when getting up out of a chair he will try to push himself out a little. He is also very cued in to his auditory environment. It’s not that he has super hearing. He’s just very tuned in and knows what certain sounds mean.
Orally, Thomas continues to chat and babble away. He sometimes says words clear as and other times it is a bit harder to decipher. Words that he will say include hello, more, no more, mum, muma, love you, hello mum, no, and bang. He does not always say words functionally but he sure likes to practice them. Words he uses functionally are love you, mum, hello and more.
As I sat on the bench in a public park the tears came easily. Watching little toddlers peddling trikes and mothers chatting to babies. Seeing pre-school children laughing and chatting as they wheeled around the water on their brightly coloured scooters.
Minding Thomas 