Last week we shared about the experience of receiving the sometimes heart breaking results after an assessment. There’s a couple of things we need to keep in mind when we see these results. Firstly, it’s important to remember that these assessments are set out to see what Hope can and cannot do and compares her abilities to those of a typical child that does not have Down syndrome. These are essential in ensuring we continue to receive the supports and therapies for Hope as it helps to show that we still require them. Secondly, we need to realise that when the assessment is done, the report is then based on what is seen that day. There may be things that we know Hope can do, but if she did not show those skills on that particular day of the assessment, it is noted down that she is unable to do it. For example, there were parts of the assessment that said she was unable to take steps on her own, and we know she can do this. It also mentioned that she is unable to go from standing to sitting with control, we know she can do this, she just didn’t demonstrate it on this particular day. So, while it is a little disheartening to read that developmentally she is only about 18 months old, we need to remember, this was just one day. If she took the assessment a couple of days later, was perhaps less tired and more cooperative (because we all have those uncooperative days right!) we may have had a completely different outcome. Developmentally, we know there are delays, but really understanding how much of a delay there is can be difficult.

If we looked at Hope’s development as a child with Down syndrome, she is excelling in many areas, particularly in her receptive language and currently her gross motor skills and we need to remember this while we read these reports so when the results do come through, they are not quite as hard to read and we know that she is actually doing well.

I don’t want to spend another blog talking about that assessment though. Within the same week, we also received another report. This was a completely different report taken without a need to compare to others or to place Hope on a scale. This one came from daycare. It was a mid-years summary and reading it was such a different experience. It wasn’t heart breaking, it didn’t get me down, it made me smile and made me realise just how well Hope is doing despite her developmental delays. I just wanted to share a couple of the comments from Hope’s educators.

“Hope engages positively and cooperatively with her peers while still practicing skills in communication and listening to others. Hope engages in turn taking tasks with up to 2 peers and is accepting of the rules and change.”

“Hope displays empathy towards her peers through hand pats and physically placing herself alongside her peers.”

This was such a beautiful thing to read. I sometimes wonder what is going through Hope’s head, and whether she understands things that are going on around her. The fact that she is displaying empathy and doing what she can to support her friends in her own way is again such a big thing for someone her age. We see it at home sometimes, if one of her brothers is upset, she will often have a concerned look or come over to see what’s happened (or she will join in when someone is crying because sometimes, that’s just what kids do)

 “Hope follows transitions between tasks including her favourite of washing her hands which she does so without prompts or added direction.”

 This was actually one of my favourite parts to read. It went into further detail about the step by step actions Hope would take in washing her hands. Again, I have often wondered how much Hope understood about routine but this goes to show that she can understand and follow routine.

“Hope openly participates in both formal and informal setting attending and remaining on task for up to 10 minutes.”

 I had to include this part because I had a little giggle when I read it. I struggle sometimes to remain on task for 10 minutes so I give big gold stars to Hope if she manages to do it.

 “Hope communicates through her own use of a variety of signs. Hope also responds to those signs when used by others. Hope also uses her facial expressions in response to her emotions.”

Once again, this one is to do with her communication. I worry from time to time because I know Hope cannot communicate the same way as others but knowing she is trying and she uses what she can makes me smile. We also hear stories about the other kids learning some of the signs which brings an even bigger smile to my face.

“Hope practiced her motor skills in balance and coordination as she manipulates large shovels of sand, kicks a ball, rolled a ball and traverses both the indoor and the outdoor space with and without her walker.”

This is inclusion. This is what we want for Hope. We want her to be able to do what she can and be praised for it, not put down or told she needs to be separated because she can’t keep up. We want her to be able to join in with other kids her own age and just fit in and be accepted. We know this is probably easier at a younger age, but we are going to do everything we can to try and make sure this continues.