Help - flapping

Hi, I’m new to this forum and not sure if this is the right place to post this query but we are having a very frustrating time with the paediatrician and occupational therapist regarding getting help for my 6 year old son.

My son has been “flapping” ever since he was able to sit up on his own. It always seemed to happen when he was excited and we just thought it was cute – he would bounce and flap his hands.

As time went on and he’s gotten older the “flapping” has become more exaggerated with my son literally jumping as high as he can whilst flapping his hands. There are also other variations on the flapping, he now also twiddles his fingers whilst stretching his face and paces diagonally across the living room floor sometimes twiddling and stretching his face at the same time.

He has other challenges too such as constantly repeating himself both verbally and actions (wants to play the same games over and over again), fine motor skills (handwriting, drawing, eating with his fingers), concentration, easily distracted, he finds change difficult, he can’t climb on climbing frames, trees etc, he gets forwards, backwards, yesterday & tomorrow mixed up, he takes a lot longer than his peers to learn new things such as swimming, karate, football etc, he puts things in his mouth such as stones, rubber of the football pitch, bits off the floor, toys, he’s constantly tired / lethargic, lacks confidence and worries a lot.

We’ve been trying to get him help for over 2 years now and feel like we aren’t getting anywhere. We’ve had 2 appointments with the paediatrician who seemed to think that he had sensory processing needs but when we finally got our appointment with the occupational therapist they have said they do not need to see him again and the pacing, flapping and finger flicking does not come under their remit. After an assessment of over 3 hours they provided us with a report that states manual dexterity standard score is 8 (25thpercentile), aiming & catching std score of 10 (50thpercentile), balance std score of 9 (37thpercentile). The report also provides information on how to help him with 13 appendix documents, which, to be honest, are overwhelming. What they don’t do though is guide us on how to help him with the pacing, flapping and finger twiddling which are our main concerns.

 The reason that we are so concerned about the flapping, pacing and finger twiddling is to try and avoid the potential for bullying. His friends have already started to ask why he does it. He obviously need to do it for release so we are not looking for help in stopping his doing it, just to try and find a way of directing it in a less obvious way. Also, we think he does it when he’s excited or anxious.

Does anyone have any experience of children with these challenges and if so can you provide us with any advice or how to get support please?