does your state have a parent advocacy group? i used to be involved in our state's Parent Information Network, and a great part of what we did was parent advocacy in special ed evals/IEPs (indiv education plans)/meetings. Often just simply support, someone else who'd gone through it before to be there by your side, to strategize before meetings and interpret what really happens, as it's a whole new world of processes, vocabulary and legality.
My kid got in through early intervention (right after birth, more or less), but then transitioned to the district. We had her in a special school due to the severity of her medical issues, but the process was the same as if we had her in a typical classroom, as the school district paid for the special school (your child's right is to a Free and Public Education appropriate to his needs, assuming you can convince the district to pay for it).
Aside from getting yourself in with whatever resources your state offers (and i'm sure there must be a group there, pm me if you can't find it, i'll get in touch with my old colleagues to find out what their national network suggestion is), i have a few suggestions:
-as a special needs parent, the following were super helpful to me:
*keep a notebook especially for Blasto's stuff. Record all doctor's visits, evaluations, etc. Any questions that come up. Any relevant data. When you go to the neuropsych, for example, you'll be all stressed out and you may forget to ask the questions you really want to ask. Keeping everything recorded also shows the doctors and district that you are serious, you are not going to let things slip. Even record every phone call, letter, etc with the state, just in case.
*see if you can get a trusted friend to come to the school district meetings with you (whether you get an advocate or not.). It is really intimidating to come into the meeting and see a whole table full, especially if you and the district do not have the same vision of what your child needs. Bring your backup.
*be extra nice to the secretaries and assistants and receptionists- whether it's for psych evals or school district stuff, these (usually) ladies hold the keys to the kingdom and often can really save your asparagus or- conversely- make your life really difficult.
*be as professional as possible in every dealing with the district and the doctors. I found we got very different treatment if I wore a suit to a meeting with them than if i went in my normal slummin' togs [rude, patronizing and presumptive, but in my experience true], for example. Same with communications. Consider it a role you might have to play to get what your kid needs. In their defense, lots of these professionals deal with parents who are quite rude, and so i suppose they expect the worst.
*learn the terminology, look at
http://nichcy.org/schoolage/keyterms*just to emphasize- DOCUMENT EVERYTHING
as a teacher, who advocated for my advisees with special needs:
*don't let the special needs or IEP process make you feel bad about your kid. I had several kids with LDs who could have totally benefited from extra test taking time, or using a laptop, or easy interventions. The parents were afraid of the stigma of LD going on their "permanent record" and avoided interventions, and at least two kids dropped out of high school, which was a damn shame.
*don't assume everyone you meet in the IEP/special ed process is out to screw you. Some might be, but most are on your (kid's) team.
Don't be pushed into anything you're not comfortable with. And you can't catch crazy!!
Go to the library and get Molly Ringwald's Parenting in Captivity, or listen to her thing on the Moth, you might feel better. Let me know if I can get you any resources.
you might want to check out
http://www.seriweb.com/ as well.... i have lots of resources and don't want to overwhelm you, but really believe that the better prepared you are, the better you and Blasto will do.
Big hugs and take it easy, wookie mama.
