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Here some suggested organisations that offer expert advice on SN.

Should be interesting

(8 Posts)
BeeMom Thu 02-May-13 00:12:15

Tomorrow morning, dh and I meet with the neuropsychologist who will be starting Bee's assessment next week. Surprisingly enough, even with all her challenges, she has had remarkably little assessment.

She did do the ADOS at 2y5, where it was felt she scored within the parameters for a diagnosis of ASD. While we don't doubt that she has some autistic traits, we have never been sold on ASD as an accurate dx for her.

She started school with a 1:1 aide and a full time nurse, was transferred to a developmental unit for her second year without additional assessment. When we moved here, she was placed in the hospital school without any more assessment here, either. We did schedule assessment for her when she was 4, but she ended up hospitalised and it was cancelled, as the goal is to have her "at her best".

We are now working toward transition to MS school over the next 2 years, and the time has come to get these assessments behind us. There seems to be a general assumption that Bee has a lot less going on in her head than we feel she does. To be honest, if the NP agrees, we'll still know she is bright, just working from a different operating system. However, we think he will see what we are seeing, and help us to develop a program for her that will bring out the best in her.

On a MASSIVELY bright side, I found out yesterday that there is a good chance that Bee will qualify for a computer at home that duplicates the one she uses at school, including the same software and interfaces. I figured we were going to have to save and fundraise to buy it, so I asked the Ed Consultant if she could give me a detailed description of the computer she uses, so we knew what we were in for with regard to cost... she told me that the assistive device program should cover it under the AAC guidelines. I was floored!

Now, that means that we have to go through the application and approval process, but this is a huge first step...

zzzzz Thu 02-May-13 00:22:09

Ooh that is a bright side!

People often think ds has a lot less going on than he does. I just keep on pointing out the obvious.

BeeMom Thu 02-May-13 02:10:23

After my supposedly "cognitively challenged" DS was assessed through his school (when an astute teacher saw the boy we always knew was there) and declared "highly superior" when he scored in the 99.5th %ile on some portions, I learned just how flawed the informal observations of so called professionals can be. With that said, one of Bee's biggest challenges is understanding and following instructions - so I'll be curious to see what the assessments uncover (if anything).

My guess (and it'll be interesting to look back and see how far off I am) is that her expressive language skills will be advanced, but receptive will be below age level. She will show severe attention deficits and signs of anxiety, numeracy and maths-related skills will be significantly low - they will identify non-verbal communication issues and impairment in executive function. Not sure what other testing will be done.

I don't know how long I'll have to wait to find out the results, but since the NP has an assistant and there is a lot of pressure from both her current and receiving schools to get this done ASAP, I hope it won't take ages...

StarlightMcKenzie Thu 02-May-13 08:09:27

Often when people imply a child is not capable, what they really mean is that THEY are not capable. Don't ever give up. Developmental difficulties does not mean developmental halt.

coff33pot Thu 02-May-13 16:10:07

Star is spot on. They either dont know how to help, cant work the child out, dont want to put the effort in because it could cost money or they dont see beyond disabilty or just dont know what they are doing.

Good luck I hope it all goes well smile

BeeMom Thu 02-May-13 18:09:40

Well, it certainly wasn't a quick meeting - we spoke for over 90 minutes, and then he had me complete a couple of behavioural inventories, as well. We talked about what role I see myself in when she starts to transition (that was a tough question) and about how he feels she needs familiarisation visits to the new school well in advance (sure hope that happens).

He says he has already observed Bee in the classroom and lunch room both actively and passively on 15 separate occasions for a few (15-20) minutes each, and will now begin the formal assessments... I have high hopes that this will be a useful report indeed. The one thing he shared with us is that, while he does not feel that "global developmental delay" is an accurate assessment of Bee, he has no doubt that she is cognitively impaired.

To me, that seems like a difference in semantics, but to him it was obviously significant. Certainly something to think about.

zzzzz Thu 02-May-13 20:08:08

I would read that as she has a deficit in some areas but not all.

Or

She is not delayed but "stopped" or limited in some areas.

Write and ask him to explain further, then mull over where and who you feel she is.

BeeMom Thu 02-May-13 20:18:29

We'll have more opportunity to talk prior to the end of assessments (he'll be working with her for another fortnight) as he said he'd like to check in with me while he is assessing her. He has many years' experience, and while the assessments will tell him some things, I am inclined to feel his experience and inferences while he is testing her will tell him more. His specialty is assessing multiply exceptional children, and essentially getting past the disabilities to determine what their cognitive capacity really is. I feel Bee is in good hands.

At the end of the day, Bee is the same child - so if these assessments give us a better picture of how to help her learn, where she excels and where she struggles most, then it is beneficial.

Frankly, we can say she is cognitively impaired, or say she is a genius, but really, well supported and nurtured, she will accomplish exactly what she is meant to accomplish.

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