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realisticdreams
member
Yet another determination meeting tomorrow.
realisticdreams
member
P has another determination meeting tomorrow. They did some testing on her, I think it was the Batelle Developmental Inventory & Observation. I had to fill out a portion of it and the majority of the questions I had to answer no too, they were mostly social/emotionally appropriate response type questions.
Honestly, i'm just so sick of this process and the fighting fighting fighting. It's just irritating that she doesn't qualify for this but she isn't allowed to do that, it's not fair that she doesn't' fit in, nor is she welcome, anywhere.
She has some major bladder testing going on the 17th of this month, and I'm not even sure what to tell her. I always tell her about appointments before they happen, but I know she is going to freak out and so I don't know if it's worth the tears she will shed/fighting in the days prior the appt and on the way there, as it would be to tell her when we get there.
Depending on the results of this test, we will forgo ever trying to cath her via her urethra because they think she may have detrusor sphincter dysenrgia in which case urethral cathing is truly painful (she has had one test say she has this & one test say she does not).
I will try to update tomorrow but I'm almost positive i'm going to get the whole, "you should be happy she doesn't qualify" speech that we've received in the past. Which no, I'm not happy, actually.
Honestly, i'm just so sick of this process and the fighting fighting fighting. It's just irritating that she doesn't qualify for this but she isn't allowed to do that, it's not fair that she doesn't' fit in, nor is she welcome, anywhere.
She has some major bladder testing going on the 17th of this month, and I'm not even sure what to tell her. I always tell her about appointments before they happen, but I know she is going to freak out and so I don't know if it's worth the tears she will shed/fighting in the days prior the appt and on the way there, as it would be to tell her when we get there.
Depending on the results of this test, we will forgo ever trying to cath her via her urethra because they think she may have detrusor sphincter dysenrgia in which case urethral cathing is truly painful (she has had one test say she has this & one test say she does not).
I will try to update tomorrow but I'm almost positive i'm going to get the whole, "you should be happy she doesn't qualify" speech that we've received in the past. Which no, I'm not happy, actually.
DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned
DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3
http://justthetipblogg.blogspot.com, The Neglected Blog.
This discussion has been closed.
Re: Yet another determination meeting tomorrow.
DS 09/2008
Like others, sorry you and your DD have to go through all this stuff and of course good luck and major good vibes to you!
I had many health appointments growing up and the anxiety of tests was always a factor. I did not like that I would not know and my mom would wake me the day of the appointment with "so are you feeling brave today?" That is how I was told today is the day.
Maybe the day before or 2 days depending on how much and how your DD deals with the anxiety; tell and prepare her for what exactly will happen even down to as much as a schedule as you know. For me, if I had a testing, they would always do that first before the other parts of the appointment so I was not sitting there worried/waiting for needles, machines, etc the whole time/day.
I do have to provide transportation, and she will be at the top of the list for 3 year old peer model next year.
Auntie-do you know much about the batelle developmental inventory? Her scores were mostly normal 85-115 was normal, her cognitive skills were 122, and they said they had never tested a child that high and that generally 5 year old's don't test over 115. She said this is probably why I feel like she is emotionally/socially behind because i'm comparing her cognitive skills to those skills, and wondering what the issue is. She said 122 would be well into the 5 year old skill level, and she just turned 3 in Nov. I think her adaptive/social skills were 84.
She scored 84 in the adaptive even with her bladder issues, personal-social domain was 90, motor domain was 107, and cognitive domain was 122. I'm not sure how accurate the test is or anything like that, but i'm glad we are finally done with the fighting, and should be set up to be a NT peer as a 3 year old and 4 year (will have to drive her farther) if no other schools pan out, until she is ready for kindy in 3 years.
Thank you for all of the support and listening to all of the ranting!!!