Saturday, 9 April 2016

Communicating Pain

Although Felix's speech has come along really well, he still has a long way to go before he can communicate enough to express his thoughts and his feelings. I often see him frustrated with me because he's trying to tell me something, but I'm not understanding him. One of the hardest things, as a parent, is that he can't tell me when he's feeling sick or if he's hurt himself. If I see that his toe is bleeding or he has a graze on his leg, there is no way for me to know what he has done.

I know a lot of parents of kids with Down syndrome will agree with me when I say that our kids have an incredibly high pain threshold. Some people say it's because of their low muscle tone, and others say it's a sensory thing. Who really knows? The problem with a high pain threshold is that people with Down syndrome can hurt themselves, or have a significant medical issue but, because they don't appear to be in pain and may not communicate it, serious injuries and illnesses can go unnoticed for longer than they should.

After five minutes
Both the speech issues and the high pain tolerance were an issue here yesterday. Felix was grizzly most of the morning; not crying, just generally upset and sooky. He has had his usual stomach issues, so they can make him behave that way. Anyway, he had been making sad little whimpering noises for about ten minutes when I thought I better stop doing the housework and just sit and cuddle him for a while. I went into the room and he said, "Mum" and held up his arms. That's when I noticed his hand was completely purple, and I'm talking eggplant purple, and freezing cold. He had wrapped some ribbon, from one of his toys, so tightly around his wrist that it had cut off circulation. Thankfully I was able to untwist it quickly, but his hand took quite a bit of time to regain colour. It was one of those, do I need to take him to the hospital, moments. After 5 minutes, a few of his fingers were still purple at the knuckles, and his wrist was still marked, but he was able to wriggle his fingers and seemed to have sensation in all of them. My heart still hasn't completely recovered, but I'm getting there!
There were also positives, as far as speech goes, yesterday. I'm choosing to celebrate the positives and not dwell on the negatives too much....

When I tucked Felix into bed for his afternoon rest he said to me, "blue blanket please!" He has a knitted blanket he likes to weave his fingers through. Anything with threads has always been a strong sensory thing for him. The completely unraveled car seat covers in my car are testimony to that fact. It was so awesome that he was able to communicate that to me, enunciating it perfectly. He had the biggest smile when I spread the blanket out on top of him. He looked so proud of himself for speaking so well.

His hand was working well enough to ride today.
Earlier yesterday, Felix was playing with some little animal counters. They are all different colours and used for practicing maths, colour recognition and sorting. This is the conversation we had:
Felix: "Good morning everyone!"
He looked at me and said, "Mum...sing!"
I obviously looked puzzled so he said in a sing-song voice, "Good morning Felix!"
"Oh sorry," I said, realising he was doing show and tell. "Good morning Felix!"
He smiled at me and picked up two of his counters, "red cow, yellow chicken." Followed by some Felix jibberish.
I said, "Oh wow, a red cow and a yellow chicken!"
He smiled, and this continued for about 15 minutes with different animals. We had to swap roles every now and again because it was "Mum's turn." He must have been missing being at school because, as well as our show and tell, he was talking about his teacher and his friends all day. So cute!

His "accent" sometimes makes words hard to understand. Yesterday, he sat next to me signing "cake" and singing something over and over. I couldn't make it out until I heard him say "hip-ray" and blow on his hand. He had been singing "Happy birthday!" He was very pleased when I finally worked it out. I'm sure he thinks I have problems with my hearing sometimes. He almost rolls his eyes at me when I finally get's about time Mum!! Once I had worked out the song, it was now time to take it in turns to sing happy birthday to each other. I had to sign "cake" while I sang happy birthday to him, and then he blew the pretend candles out, and then we'd swap. I don't think I've ever sung happy birthday that many times in a row!

It's funny that that I had been so focused on speech yesterday. After lunch I got an unexpected phone call from Felix's new Speech Pathologist. She had gone to the school to have her first session with him but, as he was home sick, she asked if she could come to the house for a visit, which she did. It was encouraging to hear her praise Felix for the way his speech is developing and to see her excited about how much he could read. I needed that affirmation, so it ended the day on a really positive note.

There were definitely some "wins" yesterday as far as speech goes. I really relish those moments because with each new word or sentence it's a step towards independence for him. I have no doubt in my mind that Felix will speak well when he is older. It's just going to take a little bit longer to get there. As I have said many times before, Felix has taught me that it doesn't matter how long it takes, it's all about enjoying the view along the way.

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