taximomfor4 said:
Hijacking this thread for a little while. MY 2nd dd (going into 2nd grade) had special ed services for preschool, but no longer qualifies in elementary. They gave us an "intervention plan" but no 504. Definitely no IEP. Our biggest problem, I guess, is that we are getting stuk at the diagnosis phase. She doesn't have one. What we have listed so far are:
*Vision Field Defect (eye abnormality left eye)
*Kidney Abnormality (hasn't caused problems yet, but exists)
*Gross Motor Delay (but she walks, runs...sort of lopes really, jumps, hops)
*Motor Planning problem (balance issues, especially)
*Fine Motor Delay (they have hyperactive kids finish her cutting tasks for her once her hands get too tired)
*Short Stature (follows around the 1st percentile)
Geneticist is confident that she has some syndrome, but cannot pinpoint one. She has some facial dysmorphisms that point to syndromes. Anyway, without a diagnosis we are left out of most camps, special programs, etc. VERY frustrating.
I have often wondered if her meltdowns (many many times per day, even in school, she bursts into tears over EVERYTHING). She is a just-turning-seven kid. One would think she would be able to NOT Cry once in a while. She cries after school, she cries after trips to stores, she cries if anyone talks to her in less than a quiet, sweet voice. She CRIES. Anyone have experience/advice with THAT?
BEth
Re: 504 or IEP. Do any of her conditions affect learning? This is what you need to prove to get the 504 or IEP. From a quick read, I would wonder about vision. A 504 can provide for sitting at the front of the class. Most teachers are pretty accomodating as far as this goes even w/o 504. (Beware sometimes schools will say, we will accomodate her without the paperwork of a 504, insist on the paperwork, though.) Has she had an OT evaluation either through the school or private? Direct OT services at school are often difficult to get. Besides the motor skill issues, I would request a full sensory evaluation from OT. My older son has issues with writing and cutting and sensory. We can't get the school to budge on direct OT services, but he does have indirect. The OT meets with his teacher and gives a plan and tells her how to help. There are also provision in his IEP. One example of how they helped him with cutting: students were to cut out slips of paper and paste on the fronts and backs of index cards for flash cards. It took him 2 hours to make 40 cards. (crying and frustrated the whole time) So, they then just put the information in two columns and he folded it in half over a piece of card stock, punched holes and put it in his binder. He just flipped the large card back and forth to study. These simple things make life so much easier.
My son's primary disability is listed as OHI, other health impaired. This is the catch all and may be where your daughter fits. My son has a secondary disability of ED (emotional). You need to be careful with this label because some school distrcts will toss these kids into classrooms that can be, let's say, difficult. This label used to be called BD, behaviorally disturbed and there were a lot of kids with a lot of problems in there. It also would be the place the schools would end up putting the kids that just wouldn't follow the rules.
My son has dx of ADHD (which got him the OHI label, but I think it is really NVLD or something on the autism spectrum, but don't care as long as he is getting the help he needs.) He also has dx of SID (sensory), generalized anxiety disorder, OCD, bipolar (all could really be autism spectrum related). He cries A LOT. He is 10 years old. He is very sensitive and frustrates easily. Takes any kind of criticism very hard. I would say 1/3 of the days he comes home from school and cries about something that happened. We have plans in place when he can't hold it together at school, too.
A neurologist may help you with a SID label. (As so often recommended, The Out of Sync Child is an excellent book and if you suspect this is a problem, give it a read and see what you think).
I would consult a psychologist (preferrably a neuropsychologist that works with children) he/she could address SID also. But, the crying may be a focus here. Our neuropsychologist is our best advocate for the school for both my children. We hire her to attend IEP meeting and to do independent observations, testing and reports. She also helps us with home advice. A letter from someone of this nature should help in another referral for eligibilty of services. (BTW, a psychologist can make an autism or autism spectrum dx).
Not sure if any of that helped. I wish we didn't have to label our kids, but as you wrote without that label, services are difficult to come by.
However, my other son, who very obviously has classic autism did NOT have a speech delay. Some have suggested that if he comes along in other areas this could lead to his dx being changed to Aspergers. Schools do seem to use HFA and Aspergers as the same. I have even had a neurologist tell me that Aspergers is really just very high functioning autism. I think the whole spectrum is changing constantly. Better to just deal with the needs of the kids and forget about the label. 
Also, in our district, we had an ASD expert who was brought in to advocate in the classroom and mentor teachers in this area if they were struggling. For whatever reason, we had a large incidence of ASD where I lived, so the district actually had a person full time who was experienced in it and able to help other teachers with it. I've only had one bad experience since DS started school in our new district (he's in 4th grade now). When I ran into a problem I went to my SPED folks, and they stepped in and helped me out. Haven't had any problems since, knock on wood 
