Thursday, 23 May 2013

Assessment results

Brotherly love
I don't think I've ever seen a kid more excited to get his hair cut! Previously, Felix has always sat well, providing he didn't have a cape on. Today he couldn't get enough of the cape. He loved it and had lots of laughs and smiles as he watched his hands move underneath it, and lifted it up and down like a parachute. His hairdresser was wonderful with him (having some gorgeous little Grandbabies of her own). She talked to him and played with his ipad. She even got underneath his cape with him, at the end, and had him cracking up laughing. Felix made sure he shared the love with the other hairdressers and made sure they all got a smile and a wave. One even signed 'thank you' as he walked out the door. What a beautiful experience both for him, and for me. Oh...and he looks very handsome and grown up with his new haircut!
Drinking water from the can, like his big

A while back, Felix had an assessment done by the Occupational Therapist. The idea was to see where he was at in terms of his development so we knew what we would need to focus on the most. I have been excitedly waiting for the report, and finally received it today. I have read a lot of stories from other Mum's of kids with Down syndrome (particularly in the US), who have to have these assessments done every year, and get quite upset when they are due to take their children for them. I didn't really understand why they would get upset about it. I mean, isn't it designed to help us with our children's development? How wrong was I! The report was depressing. All it focused on, was what Felix couldn't do. I felt really deflated. I guess I was expecting it to be balanced in some way, stating also, the things he could do well.

I am under no illusions about Felix's abilities. I know he has delays; he always will! I think the frustrating thing is that I wish these assessments could be done by placing cameras in our home for a week, to observe our kids in their home environment, to give a more accurate representation of their abilities. Felix was in a bit of a 'mood' on the day of the assessment. He didn't appreciate having an activity put in front of him, only to have it taken away 2 minutes later and another one put in it's place. He started to get frustrated and started throwing the blocks and toys off the table and onto the floor. He was bored, and wasn't into it at all, so he barely finished any of the 'tests' (I'd like to see any 'typical' two year old be totally cooperative for an hour under those circumstances). The OT has spent a lot of time with Felix and she knows what he is capable of but, unfortunately, the testing required her only to note down the way he performed on the day!
One of the boys!

The results of the testing showed that Felix needs to do lots of activities to strengthen his hands, which we already knew previously. The rest of the results really stated the obvious. He has delays in both his fine and gross motor skills and lacks strength in his upper body. All of these are things we had been working on anyway and, are a given when you have a child with Down syndrome. Will we do the testing again? I don't think so; at least not for a while. It may be a good thing to do before Felix starts school, so that his teachers have a grasp of what he will need help with but, to be honest, I think a letter from his Kindy teacher, giving a balance of what he can do, and what he needs help with, would probably be a lot more useful. I feel like all this assessment says is, "Felix has Down syndrome, so he has delays". I'm pretty sure that we didn't need an 'official' assessment to tell us that. I must note, that Felix's Occupational Therapist is lovely and has been really good with Felix. My view on the testing is in no way a reflection on her, she was only doing the assessment in the way it was designed. I know that if she had to write down her own personal observations, over her time with Felix, it would be a lot more balanced.
New haircut (and some lunch around
his mouth!)

Well...that's my gripe for today. It's one of the frustrations of having a child with a disability. It seems that a lot of time is spent addressing what they can't do. This is a necessity, in one way, because it means we can give them extra help so that one day they are able to do things they once had difficulty with, and when that happens, it is so exciting. On the other hand, sometimes it's nice to have a break and spend time celebrating all the things they can do, and forget about the hours and hours of therapies and appointments. They deserve it; they work so much harder than the rest of us. Imagine if, every day, we had to get up and work on all the things we're not good at over and over again. Imagine having to practice walking, or doing repetitive activities day in and day out, without a break. That is life for a person with a disability. No wonder they are often some of the most resilient, patient, and hard working people we will ever meet. They don't always have the luxury of just 'taking it easy'. Everything they do takes much more concentration and effort. Felix really is my hero. He takes on life with so much love and a huge smile, even though it's often challenging for him. He is incredible!


  1. Could not agree more with you Kylie. This is an absolute truth.! Well done for beginning the dialogue....x

  2. Great post Kylie. You're so right - how would ANY 2yo child perform when put in an artificial testing environment for an hour?? We don't need an official test to know just how amazing Felix is x

  3. Thank you both :) He really is an amazing little boy and I know he is doing great things. A one hour test was never going to show all the abilities he has! My blog probably sounded a bit angry; sorry about that. Hahahaha....this Mumma gets a bit defensive of her baby bear :)