Here are some suggested organisations that offer expert advice on special needs.
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Inattentive ADHD?(4 Posts)
DD is 7 and has Spina Bifida. She really struggles academically at school (mainstream) and for a while, I have had a feeling that there is most definitely a reason behind it. She can’t concentrate at school, struggles to contain her anger/frustration if she doesn’t understand something, has very poor information retention, poor organisation, daydreams, seems to ‘switch off’ and change the subject if somebody is talking to her, and now one of the TA’s has told me that she has an ongoing concern about her inability to read social situations.
Does anybody else have a child with similar issues? I’ve been trying to get an ed psych assessment done but the school haven’t referred her yet (despite asking 7 months ago). She does have an appointment with her paediatrician in 4 weeks time, so I will definitely bring it up with her too. I don’t know if I’m just reading too much into things
Ask the TA for her observations and take them to the Paed.
Ask for a referral to a paediatric sensory OT. It could be that your dd needs a better sitting posture/knobbly cushions/saddle chair to provide proprioceptive input. If so, once that's sorted, she may be able to focus. (Be prepared to learn shedloads of stuff like this, it's an education in its own right)
Ask for her processing speeds to be assessed, she can't keep up in class or interact appropriately with staff or other pupils if she's overloaded with info all the time.
Ideally a team assessing her is the best way, OT, Ed Psych, SLT and Paed. Ask the Paed what services are available in your area and stress you want assessments with reports that contain recommendations for interventions to help her both at school and at home.
From reading these boards, it's apparent it's just a case of what's available in your area.
Lastly, learn to be That Parent and keep pushing for what your dd needs, don't be fobbed off. some of the professionals have over a year's waiting lists already, so the sooner you can set up appointments, the better it will be. Don't be at the stage where you have a year plus wait between seeing each professional.
BlankTimes that really is helpful, thank you very much. I will definitely ask the TA to note some things I can take with me. And good advice regarding not leaving large gaps between each professional. It’s extremely frustrating that we’re near the end of the school year now.
Can I just ask what SLT is??
Sorry, SLT = Speech and Language Therapist which isn't only for language, it's for things like chewing, swallowing and a fair few other things.
Diagnosis is a strange system, in my area a Paed can diagnose Dyspraxia but an OT can only diagnose Sensory Integration which for the balance/co-ordination stuff from a Mum point of view, there's only a whisker between them, but Sensory Integration is not recognised as a disability.
A SLT can diagnose pragmatic language difficulties, processing speed, communication difficulties and other stuff, (not a disability if they do though, it's a Significant Language Impairment) but an Ed Psych can diagnose ASD which is a disability, again for the communication bits from a Mum point of view is particularly similar.
Also one professional will not contradict another. This is why the Team approach works so well, all of the professionals share the test results, observations and conclusions and come to a joint decision on diagnosis or main diagnosis (dx) with co-morbids.
However, it depends whether the team approach is available or whether you have to keep pushing for one professional's opinion, then another, then another. Or go private, but then some Local Authorities won't "believe" any diagnosis or implement any interventions unless the practitioner is an NHS one.
Sometimes, you can find a practitioner who works one day a week for the NHS and the other four as a private doctor, which means the Local Authority have to "believe" what they say, whether you pay for their services or use the NHS route.
The Dr. who dxd my relative as an adult with ASC worked like that, but I was never told about it or given the option to see them privately. I would have done as it was over an 18 month waiting list for an NHS dx from that Dr.
My relative is now in their mid-twenties, so some of my information may be out of date, but that's how the diagnostic pathway has been for us.
Schools should put interventions into place based on a child's needs, very often this doesn't happen without dx because schools have to apply for funding and it seems that SENCO and some professionals like to adopt a wait and see approach. again, a lot of it is postcode lottery.
Getting a child's extra needs identified and getting help for a child who has extra needs really shouldn't be this difficult, but mostly it is.
You'll get there, but be prepared for a bumpy journey, these boards are a mine of information, no matter what you're trying to battle through, someone can point you in the right direction.
Never give up