Two Steps Forward, One Step Back

This face always makes me smile

Today has been a frustrating day, on so many levels. It was Special Needs Playgroup day and I was looking forward to getting Felix out of the house to be with some other children his age. He has had some really positive times recently, in groups of children, and it seemed that we were getting somewhere with his confidence around other little ones. That being said, I feel like we took a giant step backwards this morning. OK, in hindsight, maybe not a giant step backwards, but it was a big step backwards. As soon as I got Felix out of his car seat, his arms clung tightly around my neck. When we walked into playgroup, he buried his face into me and hugged me tight. I knew it was going to be a long morning.

Felix only weighs 9.1kg (20.06lbs), which isn't very much at all for a 29 month old. When you are wearing that 9kgs around your neck, it becomes quite heavy and, when that 9kgs is also hanging onto your hair for dear life, your head feels like it might dislodge and fall off. I sometimes feel tempted to shave my head just so Felix doesn't have anything to hang on to. Is Felix clingy like this, because he has Down Syndrome? No, I don't think so. I think it just proves that he is like a lot of other children, showing a particularly shy or fearful side of his personality. However, his sensitivity to squeals and screams is most likely due to his narrower than usual ear canals, making certain sounds appear higher in pitch to him; therefore unpleasant. He has got a bit better with squealing etc, but still finds the noise of a baby screaming, or really shrill noises, hard to bear.

Hungry boy

As the morning progressed, Felix hung onto me a little less tightly. He interacted beautifully with the adults who were there; smiling and waving and being very charming, but refused to leave the safety of my lap to sit next to another child, or even play close to them. He was at his most relaxed during song time, and was happy to get down off my lap to put his photo on the board during the welcome song. As soon as he had put his photo on the board and clapped at how clever he was, he quickly climbed back up onto my lap and assumed the baby koala position on my chest. I do enjoy his cuddles, but I consider it a really successful morning if he has at least some interaction with another child, which didn't happen today.

There were other frustrations today regarding Felix's therapy. Being a country town, our facilities are quite limited at times and staffing can be minimal, or even non-existent. We really want the best for Felix, especially during his formative years when he has such a huge capacity for learning. I sometimes feel like we're beating our heads against a brick wall to try and get appointments to check on his progress. Usually, I don't let it get the better of me but today I felt very frustrated and overwhelmed by it all.

Do you mind? I'm eating!

If there's anything that can make me feel better when I'm feeling a bit flat, it's some time with Felix. When we got home from playgroup, Felix relaxed immediately. He told me he wanted to eat, so I got him a snack and we sat and just hung out together. We read some stories and sang some songs. Felix picked up one of my dresses and put it over his head and then laughed and laughed when I pulled it off and said, "Boo". He just made my heart melt today. He spoke a couple of new words, "Ball" and "Baby" which was super exciting. To see the way he concentrates so hard on putting his mouth in exactly the right position before he tries to say the word, is really amazing. It's obvious to me that he has so many words on the tip of his tongue, just waiting to come tumbling out. He has already learnt to speak four new words this week and we're thoroughly enjoying hearing that precious little voice starting to vocalise. Exciting times!