Oh boy...here we go again...more testing

[swellmomma]

Background: ds13 has a multitude of issues, last Nov (as in 2010) he spent a month in the children's mental health ward of the hospital for assessment. The dr lied through his teeth about ds's test results and "lost" his testing for 7 months. The ped finally tracked down a copy from the tester (3rd party not part of the hospital program officially). Testing proved dr at hospital lied about all results. After the hospital teh therapist we were seeing sent us to a shrink to determine the next steps. Since the testing was missing she took the word of the shrink he had in the hospital and declared ds "normal" with a bad mother. Ds punched me in the face before we even got out of the parking lot because his shoes did not feel right.

 

A few years ago he was twice Dx with PDD-NOS and twice had it recinded. I have had the scout master, his old swim coach, his old piano teacher etc ask if he is on the spectrum, he acts like it. DD's best friend has autism(fairly high functioning), and the friend's little brother has low functioning, and their parents have asked if he is on the spectrum etc.

 

Skip ahead to today, I got a call from the central intake office, they are the ones that set us up with the OT and SLP. It is a special program for the central part of the province that connects families to all of these services without relying on the school system like the capital region does. Anyway, I guess the OT and SLP were feeling ds8 needed further assessment they feel he is on the spectrum in some way, or at the very least has developmental delays deeper than what they can Dx on their own. It is true he has a myriad of things showing up in his assessments so far and we have not even done the psychoeducational testing. So he is being referred the neurodevelopmental clinic through the central office and will have all the testing done through them to determine if he has enough developmental delays to say he is on the spectrum.

 

Apparently the OT and SLP in giving the central intake our background info mentioned ds13. Because he is not being treated by the SLP and OT they could not put forth the referral for him but felt it would be beneficial to get further assessments done that the hospital did not do (they focused on mental health not developmental delays). SO the central intake asked permission to send a form to the ped today to be filled out as a referral for ds13 to also begin all this screening.

 

Not sure when we will actually get in, but it looks like ds13 and ds8 will both finally be seen in a neurodevelopmental clinic. SOmething I have been trying to make happen for years but was hitting barriers to in the city.

 

Until testing is done we won't kknow for sure, but I have mixed feelings about the possibility of both of them being ASD.

 

THis last 6 months has been such a series of tests, and assessments, and therapies etc school is a fraction of what I pictured it would be this year but all of this testing is so important. Especially for ds13 as he nears high school.

 

Do any of you ever feel like it is a never ending cycle of testing/assessments and therapies with little time for much else?

[Night Elf]

I'm always amazed when I read about the testing done for some of the kids on this board. I didn't experience any of that. My ds15 was diagnosed, at age 9, with Aspergers by a child psychiatrist after I filled in a questionnaire and answered some questions during a one hour appointment. All I ever got was pats on the head when I voiced any concerns. They always interpreted my questions about testing as me asking for a cure. They just wouldn't listen to me and I didn't know what to else to say or where else to turn. My son has never received any kind of professional evaluation or testing.

 

:grouphug: I hope it all works out this time!

[LostSurprise]

Yes.

 

My son is 7 and while he's endured endless medical testing for medication levels, liver function, kidneys, etc. he's just started his initial developmental testing.

 

We were at the neuropsych last week. This week is the OT evaluation (missed yesterday because he had a seizure 10 min away from the appointment and rescheduled for today). Next week is the SLP evaluation.

 

Hopefully all of this will go somewhere. I had to push a little to get this.

 

I hope they reach an understanding about your son.

[swellmomma]

I'm always amazed when I read about the testing done for some of the kids on this board. I didn't experience any of that. My ds15 was diagnosed, at age 9, with Aspergers by a child psychiatrist after I filled in a questionnaire and answered some questions during a one hour appointment. All I ever got was pats on the head when I voiced any concerns. They always interpreted my questions about testing as me asking for a cure. They just wouldn't listen to me and I didn't know what to else to say or where else to turn. My son has never received any kind of professional evaluation or testing.

 

:grouphug: I hope it all works out this time!

 

YOu are very very lucky. I have been able to get ds8 tested more easily than ds13. DS13 is a tricky case because his behaviour cycle and come and go, so with the long waiting lists to get in, by the time we got in (or go back for followup appts) that behaviour has passed (not for good, just for then) so it gets discounted. Those testing do not look at the over all pattern, they just see it gone and claim that proves he does not have X disorder. He seems to ride the line between normal and special needs, he is not quite normal but he is not quite bad enough to completely fit into a particular label. His Dx changes based on who we are seeing that day.

 

Yes.

 

My son is 7 and while he's endured endless medical testing for medication levels, liver function, kidneys, etc. he's just started his initial developmental testing.

 

We were at the neuropsych last week. This week is the OT evaluation (missed yesterday because he had a seizure 10 min away from the appointment and rescheduled for today). Next week is the SLP evaluation.

 

Hopefully all of this will go somewhere. I had to push a little to get this.

 

I hope they reach an understanding about your son.

 

Me too. I think with ds8 the assessments will go well, he has been fully fitting into the categories for his labels. It is ds13 that is so tricky. It's not that I *want* him to have ASD but it would open the doors to so many other services that could help him so that he is not struggling so much anymore kwim.