Perhaps one of the most befuddling experiences as the parent of an extra-special kid is how to make sure your child gets a proper education. From the outside, this may seem like a simple situation. School down the street; send child to school. There are lots and lots of parents of extra-special kids who do just that. For them, that works. For many of the people I know, however, it isn't that simple. These kids need all sorts of different accommodations and teaching methods in order to receive an education.
Schools have it tough. They must provide a free and appropriate education to every child, even as the numbers of children needing special services is on the rise and budget money is on the decline. The Individuals with Disabilities Education Act (IDEA) allows Congress to contribute up to 40% of the per pupil cost for special education services, yet the actual amount that is paid is 18%, at best, and often less than that. Schools have to provide the services, no matter what they are, if the services are deemed appropriate for the child. Budget doesn't matter; in fact, it is illegal for a school to even imply to a parent that a child is not getting a service because the school can't afford it.
Parents want the best for their children. When I look at K, I can see all that she is capable of and I don't want her to ever feel like her options are limited because of her challenges. She will be able to do anything she chooses, as long as she gets the proper education now. It is frustrating to know that, legally, the school is only required to give her enough to pass. Meeting her full potential is not even a topic of discussion. It's a crappy position for both sides of the table. I can only imagine that it must be extremely frustrating for some educators to know what should be done and be limited by what can be done. Knowing this, though, you will have a better understanding of what the school can do and what they don't have to do. They don't have to make sure your child functions well at home; they do have make sure your child can function well at school.
I am often asked to share what I know about navigating the school system for an IEP. I've learned through trial and error. I'm happy to share what I have learned. Others have shared with me and we can all pay it forward. I am not expert by any means, but this is what I have figured out that works for me:
1. When the school is offering services for your child, whether that be in the form of accommodations in the classroom (i.e. seating in the front of the room, extra time on tests) or direct service (speech therapy, resource specialist), you can safely assume that they are not putting their best offer on the table. They are operating under a "less is more" philosophy. Consider this merely a starting point for negotiation.
2. Never, ever, ever, sign the IEP at the meeting. Even if the document is everything you could have ever wanted for your child served up on a 24kt gold platter and surrounded by See's Candies wrapped in a college scholarship, don't sign it. We are all human; sitting in a long meeting can take a lot out of you, especially when the discussion is about your child. Take it home and read it when you aren't so overwhelmed. Once, our very well-meaning, very pregnant speech therapist wrote a goal that stated, "K has trouble with vowels." It should have been, "K has trouble with verbs." Small typo? Maybe, but the next speech therapist to work with K might have been going down the entirely wrong road had I not caught the mistake when I reread the IEP at home.
3. Make sure you are prepared and your input is documented. Create an agenda for yourself. You should know exactly what you want to have discussed. List ALL of your concerns. If you say it at the IEP meeting, it should be documented. This is another reason not to sign the IEP at the meeting. Sometimes the notes need to be reviewed and revised if they don't reflect your input.
4. To the best of your ability, be ready to advocate for your child. This is really hard. I'd prefer to just be straight, lay it all out on the table, have everyone agree with me and move on. ;-) I tell myself that while I may not be an expert in Special Education or Special Education Law, I have a Ph.D. in my daughter. Do your research; know as much as you can about your child's diagnosis and from there find out what kinds of methods might work best for her. Be ready to make suggestions even if they are "out of the box." Even if you aren't a master negotiator, you build credibility by being prepared.
5. Don't be afraid to question what you are told and don't be afraid to go the distance. When K was in preschool, her teacher said to me, "We think K has a sensory integration issue. She's standing on her head in buckets of blocks." I had K assessed and whoa! The teacher was right! Fast forward to the meeting and the teacher remained silent while the occupational therapist said, "No, she doesn't have any trouble. Any sensory issues she has don't impact her access to her education." What? Standing on your head in buckets of blocks isn't a problem? We kept questioning and pushing until we got something helpful in place for K. Twice in that process, we had to threaten legal action. If your gut tells you this is important, then you need to trust that instinct.
6. Assume that your team wants to do what they can for your child. This may or may not be true, but assume the best and prepare for the worst. Most of the people in the meeting really don't have decision making power, but they do know that budgets are stretched and their student caseloads are increasing. Sometimes putting your foot down often enough results in having an actual decision maker at the table. That's a good thing. I'd rather know what/who I'm up against.
7. Know your rights. You have the right to call an IEP meeting at any time, for any reason. You are entitled to regular progress reports. You have the right to have things explained to you in language you can understand (those assessments can be akin to reading Greek when you only speak English). You have the right to ask as many questions as it takes for you to feel confident about the school situation. I finally figured out that asking if K is making progress isn't enough. I have to ask, "Is she making the kind of progress you would have expected her to be making at this point in time with the materials/curriculum you are using?" If the answer is no, I have the right to question what they are going to do about it and in what time frame and what the expected length of time would be to see results to determine if the change has been the right one. This is supposed to be a team and you, the parents, are on the team, not just spectators in the stands.
8. Take the Suck-Up Cookies. Everyone is happier with a tummy full of yummy goodies.
Then, when you are in this process, take a look at your "typical" child and note with extra appreciation how easy things are with her in comparison to all of the above.