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Advice and guidance

NAS93802

Hi, I'm new and I didn't know where to turn. I'm really hoping that you can help. I'm a grandmother to a 5 year old boy with ASD (let's call him Cady). His parents share split custody on a weekly basis. He was diagnosed two years ago, he doesn't like change and has abandonment issues. 

A bit of background, Cady doesn't eat anything at all, his only form of sustenance is milk, which has to be vanilla flavored, which he still drinks from a bottle. He started seeing an OT right after the diagnosis to help with non-eating and two later, we have made no headway. He is still wearing diapers as well. We have had no help with issues that has arisen from the OT. I would like a different OT and school but not my decision. 

The shared custody works well for us, as we get to see Cady every second week instead of every second weekend. The problem we are facing is that when he's with us, he doesn't want to go to school. When he's with his mother, he has no problem attending and goes everyday. He starts crying uncontrollably when we dress him and we have a difficult time to calm him down. When this first started, we notified the school and the OT and the advice that was given, let him cry and force him into the car. According to them, he is manipulating us. We did that and he cried all the way to school and refused to get out of the car. I don't believe that he's manipulating us. It is also a battle for him to with his mother when she collects him, he refuses to go with her.

I know I'm all over the place, please forgive me

Parents

  • Is it the OT or the school that thinks he’s manipulating you? This is a very harmful narrative (he’s almost certainly not manipulating you, even if he was it should be seen as a desperate attempt to avoid school and not any inherent ‘badness’). Have you discussed your concerns with both of his parents? If you offer solutions instead of just ‘this is wrong’ they may be more open to listening/looking around.

    Having a specific therapist who is experienced in restrictive eating/ARFID may help from that perspective. It sounds like he is dealing with a lot of change, and as a result he won’t have the ‘coping reserves’ to deal with school on top of that. Do you use any visual aids- like a ‘daily timetable’ that can help him anticipate what will happen at school/who’s coming to pick him up? I’m a fully grown, independent adult and that amount of change on such a regular basis would seriously upset me, so I’m not surprised he’s struggling to cope. 

    Planning regulating activities into his routine can also help with the transitions, eg if his mother picked him up to take him to an activity he enjoys- I recommend it a lot, but hippotherapy/RDA is really incredible. Depending on what he enjoys though, this could be anything from going to a trampoline park (great vestibular stimulation) to a library or museum. Is he attending school full time? 

Reply

  • Is it the OT or the school that thinks he’s manipulating you? This is a very harmful narrative (he’s almost certainly not manipulating you, even if he was it should be seen as a desperate attempt to avoid school and not any inherent ‘badness’). Have you discussed your concerns with both of his parents? If you offer solutions instead of just ‘this is wrong’ they may be more open to listening/looking around.

    Having a specific therapist who is experienced in restrictive eating/ARFID may help from that perspective. It sounds like he is dealing with a lot of change, and as a result he won’t have the ‘coping reserves’ to deal with school on top of that. Do you use any visual aids- like a ‘daily timetable’ that can help him anticipate what will happen at school/who’s coming to pick him up? I’m a fully grown, independent adult and that amount of change on such a regular basis would seriously upset me, so I’m not surprised he’s struggling to cope. 

    Planning regulating activities into his routine can also help with the transitions, eg if his mother picked him up to take him to an activity he enjoys- I recommend it a lot, but hippotherapy/RDA is really incredible. Depending on what he enjoys though, this could be anything from going to a trampoline park (great vestibular stimulation) to a library or museum. Is he attending school full time? 

Children
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