Blogging

Our last CDC appointment

It has taken me some time to sum up my thoughts about my son’s last child development clinic appointment, which occurred about a week ago. The last time we saw the consultant was back in March where he was doing a wait and see approach, wanted to give him time to settle into his new school and environment, but the consultant gave us some ASD and profiling questionnaires for both us and his teachers. I think as usual we are at the same conclusion as last year with the NHS, we have radically different answers and results than the school. We see less of the problems, not saying there isn’t any issues, he is not a perfect child, but we do not have the level of meltdowns in our care and he definitely is having issues at school and other care settings. However, I still need to be utterly convinced ASD is the right label for my son. I don’t think the ASD conversation last week was handled sensitively by the paediatrician in front of my son and nearly caused a meltdown in the surgery itself. To be honest my son was managing to control his behaviour as long as possible with the amount of waiting around we had to do, as our CDC for our area is in the most inconvenient place and no where near us. We waited for two buses, instead of getting an expensive taxi this time, which are difficult to get hold of where I live. I know you are thinking why, but there just isn’t enough local taxi firms where we now live. One of the bus journeys was nearly an hour long, and we ended up having to arrive early for our appointment due to public transport connections, and his appointment ended up running slightly late anyway and he did his best to entertain himself in the waiting room with the toys they had. He also had a lunch time appointment, which isn’t the best time of the day as he was getting hungry and had eaten all his snacks that I packed for him on the way, but we had no other choice to accept or otherwise wait another month or so for another appointment. I have complained, a) suspected ASD diagnosis not handled sensitively in particular in regards to my son’s suspected diagnosis b) I think we have waited long enough to get an assessment in school, and this should be triggered before the half term arrives, I know I probably have unrealistic expectations in particular with regards to how the NHS operates, but NICE guidelines recommends assessments should be done within 3 months when there are any suspicions of autism c) We have a right to see the answers to the school’s questionnaires.

I am now waiting for answers to my questions.

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Blogging

The Assessment

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News hot off the press from the initial assessment by the paediatrician, my son does not have ASD and it is very unlikely he has it!

Again, you think we would be celebrating by now, but no, we have not been discharged as yet as his behaviour he is apparently presenting at school is still very challenging.

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If only?
However, there is a huge difference with his behaviour displayed at school and at home or social settings we take him to. Of course we have some issues with his behaviour, but very different to the ones he has at school, our issues is bed-sharing to go to sleep, occasionally running off (although a recent marked improvement) and the occasional fussy eating. The aggression is not as bad with us, but yes, sometimes he can be a grumpy uncooperative bugger, but nothing I cannot deal with.

The paediatrician also said maybe I am too much of an expert on my son and preempt his tantrums a bit too much, and should let him get on with it and try to problem solve these incidents for himself, and then yes, get yelled at by some some chav family that my son has got crossed at their child ha!

So that’s where we are, in limbo and no man’s land. His school have made it clear they don’t find his behaviour easy to manage, but have no idea where we go from here.

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Been suffering with multiple chest infections and colds as a family, and stress of this probably doesn’t help me.

Looking forward to resuming our son’s gymnastics class tomorrow after a week break because of illness and hoping he is still making good progress here!