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Really confused can anyone please help?(6 Posts)
My ds (10) has been referred to the community paeds team. We did an assq questionnaire, as did school and we are due to see the paed this mth. I have two issues really but I don't want to come across as one of those parents who insists the professionals are wrong and I'm right.
My first issue is that last mth my ds had a speech and language assessment. The salt said she had no concerns, that she felt all his issues were sensory related and I should push the paed to refer ds for an OT assessment. Initially I was relieved as she gave the impression he definitely isn't on the spectrum but I'm starting to question how accurate the assessment really was of him and how professional she was/is. The written report I received states he is known to dietics but he's not and never has been so I've no idea where this has come from! I'm not sure she is qualified too, or should be telling me all his issues are sensory related either? I was also a little wary of the assessment as the answers my ds gave to some questions (like how would you feel if you had to go shopping) were totally different to how he actually reacts. For example, for this question he said he wouldn't feel anything but he HATES shopping and one of us often has to take him outside if it's too noisy/busy. He also tends to deny there are any issues, making excuses. (Although he dug himself a hole when he said his picky eating, which I assumed was due to taste sensitivity, was because he didn't like the smelllll of the food ). She also asked things like 'what does x mean when she tells y to pull your socks up' I can't help but feel that at 10 many kids with aspergers would have worked out what many simple well known sayings mean anyway? She also commented on how he reads fiction as well as non fiction. Is it really that black and white?
Issue two, I was speaking to a family member last night who has a lot of experience in this area and many friends who also have lots of experience, who she has discussed my ds with. She is utterly convinced my ds has aspergers. I told them (family members) about the salt assessment and they are telling me not to be fobbed off as once ds goes to high school things may implode and suddenly get much worse for him. I agree which is why we've asked for a referral now to find out for certain one way or the other if ds is on the spectrum. She told me to get the school to help ds but I don't know how. He does well academically and causes no issues at school so I don't know what I could even ask for help with. She told me to look up the local offer but it says a child needs significant sen and I think school would say ds has none because he copes fine and doesn't give them any bother. I feel really confused as salt gave the distinct impression ds is not on the spectrum but my family member feels he very much is.
I don't think it helps we haven't seen the paed team yet so I don't know what will happen next. Whether they will assess him for aspergers further or say he doesn't need any further assessment for that due to salt report? If I tell the paeds team I'm not convinced the salt assessment gives an accurate picture of him am I just going to be labelled one of 'those' parents?
I feel really pressured as obviously I want whats best for my ds, I don't want to be fobbed off if there is something going on for him but equally you hear so many horror stories about this process and I don't want to be making a fuss if actually he's just not on the spectrum. He definitely has sensory issues, it's just if it's that alone or is there more too it.
Any advice would be gratefully received. I don't really have anyone to talk too apart from my family members memtioned above. My dh is also awaiting assessment which is another reason I've asked for my sons referral as they are so similar and I'm feeling a bit and arghhh!
I was also wondering what's deemed appropriate eye contact? Salt said my son made appropriate eye contact. Yet us, school and family members who all wrote down the things they'd noticed as evidence for his referral (so 7 people counting all of us) commented on his lack of eye contact. Is it worth mentioning to the paed that the salt assessment was done in the summer holidays? My ds is much chirper during this time presumably because there's no everyday dealing with school pressure.
If he is coping fine at school then you could ask if they are making any accommodations. If not then you don't need them to as he's fine. If yes then ask why and how they feel it helps and relay to peadiatrician.
Ignore SALT on anything not SALT related (unless she has further training?).
Ask for OT assessment, there might be things that could help.
Ignore helpful relative (politely). Nothing has to go horribly wrong at secondary in fact many of our kids thrive in secondary in a way they didn't at primary.
It sounds really stressful . You are probably doing a brilliant job.
Thanks for the response. Ds was referred to OT when younger but they refused to accept the referral as they only dealt with sensory issues in children on the spectrum. Fingers crossed their policies have changed since!
I think to ignore all the does he have Aspergers or not and look at the specific needs he does have for now. You can ask salt for clarification of her narrative and it's meaning. Ask pead to assess DS because he struggles with X y and z. If he's out on ASD dx pathway it's because his difficulties point to that.
It's a surprisingly long process and you have to be patient but most people get the answers they need (or suspect!) in the end.
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